Maryn's Hope - Searching for a Miracle

A Year Of Mourning

2012-01-25T19:22:00.003-07:00

365 days without your hand in mine. 365 days without a kiss from your lips, without an "I love you, mommy." 365 days without the joy of you in my life. 365 days ago you were lifted from my arms into the arms of the Christ; from earthly happiness to eternal joy. 365 days ago I felt the immense loss of you next to me; from earthly worry and fear at the thought of losing you, to deep depression, then anger and today, conviction and strength that even though you are gone, you have more happiness and peace then I could ever bring into your life here on Earth. I love you enough to let you go and to make the best of my life here, until we meet again. My life is not the same without you, I will never be the same without you. I am still trying to find my new life, a new kind of normal after having loved and lost. Most days I get up and get moving because I know that's what you would want, and some days, when I can, I just sit home and cry. The ocean of tears seems to help my heart heal somehow. I have shed so many heartfelt tears for you; tears on my pillow, tears on your pictures, tears on your blankets, your stuffed animals, your jammies, even stray socks that I find in the laundry. I miss the smell of you, your laughter, your bossiness, your jokes. I miss all manner of things about you; how you liked to use big words such as "definitely" and "actually", how you once asked me if I was leaving the house wearing a certain pair of shoes. I said yes and you said, with your arms folded and stance firm, "then I'm not going with you!" You hated those shoes. :) I haven't worn them since but I still have them because they remind me of you. I miss that you would tell me jokes every night before bed. I miss our "5 Little Monkeys Jumping on the Bed" and all 5 times you were the monkey who would fall down and then get back up and do it again. I miss you singing, all the time you were singing. Your aunt and I like to talk about you in heaven and how you're probably keeping everyone in stitches with your jokes and spreading sunshine all over the place with your beautiful voice, singing with all the emotion in your heart.

I went to visit you twice today, once by myself (with your aunt) and once with your sisters. Each time we placed flowers on your grave. I haven't been up to visit much this past year. Each time I go, I come home feeling as if I've died and sank to the bottom of the fish bowl. I just want to lie there and never get up. Most days I have to just move through the day without much reflection, or life gets too depressing. I always have you on my heart and in my mind and sometimes I can feel your presence. It warms me, usually around my ankles I get a sensation that something is sitting on me and sometimes I feel it at night too. I feel a peacefulness about you. This has helped me to heal. I don't know if I'm going crazy or if it's real but it's help me get through life. There are nights where I've had dreams about you and I wake up not knowing if you visited me or if it's just in my head, but always the dreams are peaceful and you are happy. Maryn, I miss you more than words can say. You are not just on my heart, not just in my heart, but you are my heart; somehow you live in me and it brings me peace.

Happy 6th Birthday Maryn!

2011-10-20T14:48:00.004-06:00

Today is your 6th birthday. I think about you always, every minute of every single day. I still wonder, every time I come across a natural ingredient or medicine of some sort, if this could have/would have saved you. I believe I will always carry this "terminal restlessness" with me, a part of life that lives in my heart from which I will never be free. I hope you are enjoying your birthday in heaven. We decorated your earthly home (Larkin Cemetery) with balloons and cards today. We will be visiting again tonight with flowers, glitter and all kinds of sparkly stuff. I hope that you are at peace and that you are loving every moment in heaven. I saw a golden butterfly today for the first time ever in my life, while visiting you. I know you sent it to me today. This thing I want to do to honor you feels right and it feels as though I have your blessing and encouragement. I love you Maryn, more than you will ever know. I am saving up all the hugs and kisses I have for you, for the day when we see each other again. Love, Mommy.

I have really been struggling with Maryn's death this past month. It occurred to me that it has been almost 9 months; it seems so long and yet so short. This week I am grateful that she passed on the 25th of the month and not the 24th. I used to tell her all the time that she was my birthday present and she was. Throughout all of her life she truly believed it. I wonder what it feels like to know that you are a gift to someone. I hope it made her feel so important and needed, because her life mattered and I did need her. I will blog more later tonight, I realized it's been 4 months since I have written anything. Before I go, I wanted to post an amazing article I read recently. The author has such a gift of writing, that speaks to the truth and the heart of parents who suffer unspeakable grief.

Notes From a Dragon Mom
Alexandra Huddleston for The New York Times
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
By EMILY RAPP
Published: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Thoughts

2011-08-04T20:42:00.002-06:00

Today has been a difficult one. While I know this isn't true, I can't help but feel guilty that something I did or said, someplace we lived or something I exposed her to, caused Maryn's brain tumor. I have apologized to her for this, just in case, only she knows. I also can't seem to let go of the hurt I am feeling at the loss of her. I am trying to move forward with my life, but am finding it very difficult to do so. I'm finding that I don't know "how" to let go of the hurt. I also feel so much guilt for the life I have created for my other two daughters. They don't deserve the unstable life they have had. They've lived through divorce, childhood cancer and death. This is not how I imagined their lives would be. They are so strong, much stronger than I am. I feel very blessed to be their mother.

I am returning to school in 2 weeks, so I am looking forward to having something to occupy my mind. It's been a long summer of grieving. I am bracing myself for a difficult year, my ex-husband just lost his job, so I'm in for another storm. I only have a little more than a year left of school, I'm praying for some peace and calmness in my life. My children definitely deserve that much.

Can't Sleep

2011-07-15T00:52:00.015-06:00

I can't sleep right now because Olivia is at a Harry Potter movie marathon. I always like to think I can sleep while she is out of the house but I can't. So I've been laying here thinking of Maryn and washing my pillow with tears. I decided to get up and do something useful - write. It's been very hard for me to write these past months. It was very painful to think my reason for writing was gone. I wasn't sure if I would ever write again, but I was surprised to see that people are still reading my blog and leaving comments, so I might as well fill in the pieces of Maryn's life that have been left out for one reason or another.

Tonight, I will start with pictures. Pictures of Maryn before her funeral, the night I went to the funeral home to dress her and do her hair. My mom, aunt and sisters were there with me. As I walked into the room, there she was, laying on a table in her pink footie pajamas. She appeared to be sleeping, she was still that beautiful. My family let me have time alone with her at first, and I guess my mind was playing tricks on me because I swear I could see her chest rising and falling as if she was taking breath after breath. I stood there in disbelief, blinked my eyes, then rubbed them, and still I saw the same thing. I walked over to where she lay, placed my hand on her chest and then my ear...nothing. She was still. I saw this several times over the course of the night. It's weird how the mind plays tricks when an unspeakable loss has occurred. I guess when we want something so much the mind will try to believe it to be true, even though it isn't.

I asked the funeral director if I could hold Maryn before we got her ready. She said, of course. I picked up her stiff, lifeless body off the table, walked over to the couch and sat down with her head in my arms. I turned her in towards my chest and again, after a few minutes, I swear I could feel her skin becoming soft and warm. I asked my mother to feel her, trying to be careful with my feelings, she said she could feel her softening up "a little". Immediately, my mind went crazy, was she coming back to me? Even though the logical side of me knew this could never be true, my mind couldn't help the little breaks from reality. I believe it was my way of surviving the situation. I wanted her back so badly. I held her for what felt like 5 minutes, but turned out to be 2 hours. I had kept my family waiting, it was no 10 o'clock and we still had alot of work to do. I didn't care though, I needed to hold her one last time.

I laid her back down on the table and kissed her forehead, cheeks and lips and told her how much I loved her. We then took her jammies off and began to remove various colors of nail polish on her fingers and toes. If there was anything Maryn loved to do, it was paint her own nails. :) We then painted her nails and beautiful pink since that was her favorite color. We then curled her hair and put butterflies in it. Then we put on her tights and the dress she picked out a month before that her aunt bought her. It was supposed to be for pictures and a dress that she could be buried in, unfortunately the funeral came before we had the chance to get pictures. I purposely did not put shoes on her feet as they really began to itch and bug her toward the end of her life. She hated them anyway to begin with, so we left her barefoot.

By the time we finished with her, she was even more beautiful than one could have imagined. She looked like she was sleeping. She looked so peaceful.

Even now when I look at her I am amazed at the power of God's creation. He created her with so much beauty, it remains with her even after her death. I know that she has filled heaven with her light and love, and that she is happy. I do wish that God would part the sky and open a little window into heaven just so I could have a peek.

Missing you so much tonight. You'll always be my baby girl. Love, mom

Almost 6 months

2011-07-13T22:10:00.002-06:00

I can't believe it's been almost six months since my sweet Maryn passed away. I was hoping that this would get easier with time but it seems lately the grief has gotten worse. Lately, every time I do something, whether it's cooking dinner, doing laundry and other mundane stuff, her presence is glaringly absent. I miss her face sitting across the counter from me (or on it) while I make dinner. I miss burying her with the warm laundry, I miss making her breakfast and getting her dressed in the morning. Mostly, I miss her at bedtime, all of her silliness and tricks to avoid going to sleep; telling me stories and jokes and then asking me to tell her stories and jokes. Every night we'd read Angelina Ballerina, her favorite book. I came across it the other day and all the memories came flooding back. I miss her singing along with Selena Gomez songs, she was quite good and had a natural talent for being a star (my little star). My life will never be the same without her and I will never be the same.

I haven't been very social over these last 6 months and I am so grateful for my friends who don't take my absence personally, who still show up at my door with a smile and a helping hand. I came across a poem the other day that struck close to home for me:

Please don't tell me you know how I feel,
Unless you have lost your child too,
Please don't tell me my broken heart will heal,
Because that is just not true,
Please don't tell me my daughter is in a better place,
Though it is true, I want her here with me,
Don't tell me someday I'll hear her voice, see her face,
Beyond today I cannot see,
Don't tell me it is time to move on,
Because I cannot,
Don't tell me to face the fact she is gone,
Because denial is something I can't stop,
Don't tell me to be thankful for the time I had,
Because I wanted more,
Don't tell me when I am my old self you will be glad,
I'll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don't hesitate to say her name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday.

Obituary

2011-03-08T16:40:00.002-07:00

Maryn Nicole Cella 2005 ~ 2011 Maryn Nicole Cella, Age 5 - From the heartbroken, loving arms of her mother into the loving arms of her Lord and Savior, our sweet, beautiful and beloved daughter, sister, granddaughter, niece, cousin, student and friend, Maryn Nicole Cella passed away January 25, 2011 peacefully surrounded by her family and friends, following a courageous 19 month battle with a rare and terminal form of brain cancer (DIPG). Born on October 20, 2005 in Sandy, Utah. She was a pillar of light and love, and touched the lives of many people all over the world. She was a beacon of inspiration and happiness, though her days were numbered. Maryn came into the world like a lamb, quiet, peaceful and happy. She grew into a playful, happy child who loved to play with her friends and sisters, dance ballet, read books, play piano and play outside. She loved to paint and draw and most of all loved her dollies and her stuffed animals. She brought happiness to so many people and fulfillment and meaning to her mother's life. She and her mother were inseparable from the day she was born. They loved each other deeply and together bravely fought the disease that eventually took her life. Maryn also loved her daddy very much. They spent many days making special memories together. She will be deeply missed. Maryn is survived by her mother, Annette Cella; father, Travis Cella (Wannisa); sisters, Olivia (14) Moriah (10), half-brother, Alex and step-sister Sara; grandparents, Gerald and Margaret Bowen, Ron and Judy Cella, as well as many aunts, uncles and extended family. A funeral mass will be celebrated Monday, January 31, 2011 at 11:00 a.m. All services will be held at St. John the Baptist Catholic Church, 11800 South 300 East, Draper. Friends may visit Sunday night, January 30, 2011 from 4:30-7:00 p.m. Holy Rosary will be recited at 5:30 p.m. Interment Larkin Sunset Gardens, 10600 South 1700 East, Sandy. Arrangements entrusted to Starks Funeral Parlor. Online condolences may be offered to the family at www.starksfuneral.com. In lieu of flowers donations may be made to Mountain America Credit Union under the name Maryn N. Cella. Maryn's story may be read at www.marynshope.blogspot.com My sweet baby girl, I love you to the moon, the sun, around the planets and back again, forever and ever. Save a place for me. I'll be there soon. May Jesus hold you in his loving arms until we are reunited. I miss you saying "mommy, holdie me." Love, Mommy.

Published in Salt Lake Tribune from January 29 to January 30, 2011

Missing You

2011-03-05T17:06:00.001-07:00

Missing you so much today. I can barely breathe.

Happy Valentines

2011-02-14T21:27:00.004-07:00

Happy Valentines Maryn! In my heart you and your sisters were my valentines today, as you have always been. I went to your grave twice today to give you a Valentine's present but it was so windy, the balloons Aunt Kitty left for you kept blowing away. I had to pick them up each time I came to see you and put them back on your site. I finally found a metal stick and pounded it into the ground to hold them there. Someone also left a silk wreath for you, so I secured that down too. Your area was a mess all the flowers and greenery that were left there for the funeral 3 weeks ago were still on your grave, dead and brown. I got everything cleaned up and looking pretty again, rearranged the wreath, the teddy and the balloons. The sky was blue but the weather was cold and very windy, so I didn't stay long. I cried for you and to you. I miss my tiny Valentine. I miss the days when I would make cards and write poems for you and give you a stuffed animal on Valentine's day. Do you remember the froggy socks I gave you last year with the hearts on them? You loved them, and it made me happy. I loved being your mommy, and being a mommy to your sisters. It's the greatest gift I have had in this life.

I try to keep busy during the day now that you're gone because I know that's what you would have wanted. You liked to do things and go places, but life feels so empty without you. My heart and my soul, my very being will never be the same without you. I missed you terribly today, it was almost more than my heart could bear. I went to Moriah's Valentine's party at school, it was fun, you would have loved it. You were always my little party buddy. I wish you could have been there. I also helped Olivia's drama club paint the set for their upcoming play. I was glad to help, it gave me something to do, but like I said, life is just not the same without you. I no longer have to worry about tripping over you because you're standing right behind me while I'm doing something. I no longer have to worry about you getting into things you shouldn't. I no longer get to hear you say, "mommy mommy mommy mommy mommmy" and then I say "what Maryn"? and you tell me "nothing, I just like saying your name." God, I miss you so much. I just want to hold you in my arms, to feel your arms around my neck, your lips or your eyelashes on my cheek, giving me a regular kiss or a "butterfly" kiss. I hope because you are in heaven now that you can see inside my heart and know how very much I loved you, how very much I wanted you, how I could feel your presence and knew you would be mine, long before you came into being. I hope you know that I would have joyfully given my own life in exchange for yours, that I did everything humanly possible to save you. I hope you can see that there was nothing in my heart for you except love, pure unconditional love. I love you with all my heart and soul and I always will.

I thought you would like to know that you are sisters are doing pretty well. They are keeping busy with school, friends and activities. The time they miss you the most, when we all miss you the most is at nighttime. We miss holding you, reading to you, watching cartoons with you, playing with you and I miss holding you in my arms while you sleep. The girls have decided that they are already going to name their future daughters after you. Every girl will have the middle name Maryn. It's just like me giving all you girls the same middle name, I was determined that you would all share something because I know sisters don't always like each other so much, so that was something you'd have to share. I feel proud that they want to honor you in this way. I want you to know that I am taking good care of your sisters, I'm doing my best even though I miss you more than words can say.

Also, I received a mysterious delivery of flowers today with a card that said:

Mom, no matter where I go or what I do....your love is always with me. Happy Valentines Day!

There was a handwritten note inside the card that said:

Dear Mommy,

Please be my Valentine now and forever. I love you to the moon and stars and back!

I am so happy here in heaven - Jesus has made me Queen of the Butterflies! He loves me so much, and you. I can't wait to see you again, give my sisters lots of llove and hugs, anlways and forever.

I love you mommy!

From, Maryn

Well, I cried my eyes out, as usual. I never did find out who sent the card and flowers, none of my friends will tell me who sent them. Maybe there is a flower shop in heaven with delivery service that I don't know about. ;) Maryn, you were loved by so many people and you continue to leave your mark on people's lives. I love you and am so proud to be your mother. I am working on the promise I made to you, the day you died. I don't know how, but someway I will make it happen.

I will write again soon. Love you forever, mom.

I Want My Baby Back

2011-02-12T20:53:00.011-07:00

I'm here in Arizona having a good time but every time I do, something strange happens. I begin to miss Maryn more than usual. I will never forget the first time I felt this emotion. My daughter's 11th birthday party was February 4th, a Friday. We had laid Maryn to rest just 4 days before. I am so grateful to all of my friends who provided for and planned a party for Moriah. It took all the strength I had just to get myself there. We had the party at Boondocks where they eat food, birthday cake and open presents first then play. Moriah had was so excited to go play, she was flying through all of the other activities as fast as she could. Just as they were getting their wristbands that would allow them a full day of fun, I asked if someone wanted to go play lasertag with me. To my surprise, almost all of the kids and some of the parents did. We had a great 20 minute game. I love lasertag. As soon as we were finished and I sat down at the table, this overwhelming feeling of guilt came over me. I realize that for the first time since Maryn passed away, I had forgotten about her while I was having fun. I felt sick, sad, hopeless and full of pain. I couldn't stop crying. How could I have forgotten about her? How could I have had a moment's fun without her? How could I do anything without her? What kind of mother was I, that I could just bury my child and then move on with life as if nothing had happened? The hole that she left behind in my heart is so huge, one could drive an airplane through it.

I had a friend come sit and talk with me, one of several conversations that were to happen between me and my friends during the weeks to come. She told me that Maryn wouldn't want me to be sad. She would want me to be happy. She reminded me that Maryn is happy where she is. I cried as I told her that I would be heartbroken if I knew that Maryn missed me or cried for me, or wanted me to hold her, or was in any way sad without me. She reminded that Maryn is in the most beautiful that one can imagine and that she is very happy and that she doesn't miss me. She then told me that what I was feeling now is part of the grieving process and it's normal. Although the conversation didn't fix all the grief in my heart, it did stop the pile of Kleenex that was building rapidly my side of the table.

I was glad that my daughter had a very happy birthday party and that she was out playing while I was bawling my eyes out. She had a wonderful time with all her friends and their wonderful mothers, who are always there for her, to build her up and cheer up. My kids might be raised by a single parent but I think they feel more love than they ever would have if I had stayed married. I am so proud of the way they are growing up and of the positive people in their lives, my friends and their husbands who give my girls such positive examples of what a healthy, happy, real and authentic marriage looks like.

I have a woman in my neighborhood who is a children's pastor at her church. She came by to visit one afternoon and told me that she had a dream shortly after Maryn passed, I think it was the same night. She said she was sitting on her porch and Maryn ran past her in a dress, giggling. She asked Maryn where her shoes were, that she should get some one before she catches cold. Maryn continued running down the street and came back a few minutes later and told her "they have balloons here"! My friend said the balloons were pink and white. Two things I found strange about this story, one, Maryn did love balloons very much, so much so that she made me deflate and pack the balloons she got in Disneyland and bring them back home and two, that when I buried Maryn she was in a dress and tights, but no shoes. I deliberately buried her without shoes because they bothered her feet so much toward the end. The only people who knew Maryn didn't have shoes on were those of my family who were at the funeral home.

Last night Moriah said Maryn visited her in a dream and said "come fly with me Moriah." It was the most beautiful story I had heard. I asked Moriah to write it down. I will post it when I receive it. Sometimes I think I feel her, but I have not been fortunate enough to have any conversations with her. I have dreamt of her a few times, but she doesn't talk to me in dreams. I think children are closer to God than adults so they are more open when a loved one calls. I miss Maryn so much that some days I can hardly stand it. It's been nearly 3 weeks, I can't believe it and I can't believe I'm still alive. I thought for sure I would die of a broken heart. I felt unusually happy on Thursday for no reason at all. I think my baby girl is holding my heart together. We promised we would never leave each other, ever. I think she is still with me, as my heart will always be with her. I told my sister that when I get to heaven, Maryn better hope she has huge wings and can fly fast because I'm going to be kissing her every chance I get (which annoys her after awhile).

I recently read the book Heaven is for Real, a story about a 4 year old boy who visited heaven. It made me feel somewhat better about Maryn being gone, it didn't change the fact that I miss her more than my heart can bear, but it did let me know that she is happy in heaven and that she doesn't miss me, which is what I want. I will deal with all of the pain life can throw at me, as long as I know that she is safe, tumor free, happy and loved.

I miss you so much. Remember when you said, "mommy, am I always gonna be your baby." I said, "yes," and I promise you will be forever my baby, Maryn. I miss the days when you would say, "promise me, you won't leave the bed while I take a nap." "I promise", I said, and you would roll over, grab my thumb hold it tightly in your hand, put your thumb in your mouth and fall asleep. With my arms around you, I would watch you sleep and listen to the sound of your breath. You were so beautiful and wonderful and amazing. I miss you so much and I want you back. I have a laminated picture of you that I carry with me along with your Minnie Mouse. It's not the same as having you in my arms. I love you so much baby girl. I know I will see you again someday but it will not be soon enough.

Here is a song, I dedicate to you today.http://www.youtube.com/watch?v=hEC-FhJZPOA

Blessing

2011-02-03T23:10:00.001-07:00

I received a huge blessing tonight. I cannot say what it is yet, but thank you Lord for watching over me and my girls, and Maryn if you're sending down prayers for us, thank you so much "pumpykin". We love you.

Headstone

2011-02-03T18:01:00.004-07:00

My sweet Maryn,

I visited you again today, only this time I brought a blanket so I could lay down on the grass next to you without getting soaking wet. It was a sunny today. The flowers and balloons are still on your grave. You have a temporary marker with your name and date of death on it. I cried and told you over and over how much I miss you and I wished you were still here with me. The emptiness inside of me feels like of huge vacuum of nothingness. My room is still a shrine to you, pictures, stuffed animals and blankets everywhere. It makes me feel close to you. I love you more than life itself and I miss you more than you'll ever know.

I walked over to the building to order your headstone. The lady began going through prices, colors and what I could put on the headstone. I started to feel sick to my stomach, tears started coming, so I told her I wasn't ready and that I would come back another day. This is so hard for me. Your sisters are missing you terribly too.

I lit a candle at church for you today and prayed that Jesus and his mom Mary would hold you in their arms and that you would feel more love than your heart can hold. I miss you so much. I can't believe it's already been 9 days without you. :(

For Maryn

2011-02-02T21:08:00.002-07:00

Hi sweetheart,

I'm missing you terribly today. It seemed like alot of work to get out of bed today, but I did manage to shower. My heart is broken into a million pieces from missing you. I do have the comfort and peace that you're in a better place, that you're happy, not sick and not missing me, so that helps me to feel better. I'm hoping tomorrow will be a better day for me. I wish I could hold you in my arms tonight and sing you to sleep. Good night Angel.

Letter to Maryn

2011-02-01T15:56:00.004-07:00

My Sweet Maryn,

You passed away one week ago today. It was at this time 4pm that the hospice told me you had minutes, maybe a few hours left on this earth. I was in shock, she was coming over to put your medication on a pump so that you would be able to relax and rest. I was not prepared for you to stop breathing as soon as she got you calmed down. You passed away at 8:05pm that night. My heart is utterly and completely broken. I miss you terribly and I feel so lost. I can't stop crying over you. I miss the smell of your hair after giving you a bath, when I say "oh Maryn, you smell freaking delicious!" and you say "thanks, I just took a bath." Like I didn't know you had a bath, even though I'm the one that gave it to you. I miss your "good morning" kisses to wake me up. I miss your legs draped over me at me, sometimes on my back and sometimes on my head when we would sleep at night. I miss you telling me you love me "to the moon, the sun, around the planets and back again." I miss everything about you.

I spent last night taping pictures of you all over the wall by my bed, then I spent the next hour and half laying there staring at them, holding the froggie blanket we made together and hugging your Minnie Mouse. Would you believe it? We found her. She was in the stroller at Kiersie's house. I'm so glad I got her back. I listened to the music I selected for your viewing and every single song was so perfect just for you. I want you to know that I finally found out the secret you had with Becky Boo that you wouldn't tell me. She brought the blanket over yesterday that you two were making for me. It is covered with pictures of you and squares of Disney princesses. It's perfect, I love it so much. Thank you. You are such a thoughtful, sweet and caring child. Always trying to do nice things for others. Sleeping with the blanket, surrounded by pictures of you and holding Minnie Mouse and "our" blanket helped me feel close to you. God, I miss you so much my baby girl. I hope this huge, gaping hole in my heart mends with time. There are teardrops on my heart and in my eyes several times each day for you. I want you back.

I visited your grave today. It was freezing cold outside, way more cold than yesterday. I laid down in the snow and put my face in the grass where yours was also. I cried and told you several times how much I love you and miss you. Surprisingly, I felt warm because the sun was shining on my black jacket and I didn't feel cold, even though when I got up my pants were covered in snow. There was a strange guy walking around your grave today when I got there. I watched him for awhile before I got out of the car. I didn't recognize him, but I figured it was probably someone whose heart you had touched. You were such an amazing little girl. Do you remember when you were small, maybe 1 or 2 and your sisters and I gave you the nickname "angel of light"? Whenever your sisters were scared to go anywhere because the lights were off, you would say "don't worry, I will come with you. I am the angel of light." I thought today how appropriate that nickname was for you and how you are filling the heavens with your love and light.

I miss you so much Maryn. It already seems like forever that I've been without you. Please stay close to me sunshine and let me know you're around, I need to know you're here. I miss you. With all of the love in my heart, mommy.

Disneyland The First Day (1-12-11)

2011-02-01T15:53:00.058-07:00

We left for Disneyland on January 12, 2011. Maryn was so excited and I was happy that we were getting the opportunity to do this now. I made sure I had all of her medicine in a separate suitcase so, hopefully we could get through security fairly easily.

The Hospice nurse had given me Lorazepam for restlessness/agitation, Hyrdromorphone, Hydrocodone and Oxycodone for pain and Ondanestron for nausea. Some were liquids to swallow and some were syringes. She gave me so many, I remember thinking there was no way we would use all of this medication in such a short amount of time. The expiration dates were about a week from the time of delivery to our house. Over the past few weeks, I've only had to give her these medications occasionally, maybe one a day. I remember the first day the Hospice nurse dropped off what seemed like an overwhelming amount of medications with a list of what they for. I hadn't needed them in the beginning, until one night Maryn seemed "out of sorts" and was complaining that her head hurt. I remember going to fridge where I kept her medicated syringes/liquids, and staring at all of my options. I had so many questions, what did "restlessness/agitation" look like in a child, how did I know if she was in enough pain to give her this kind of medication and which of the 3 pain meds was I supposed to choose? Could they all be given to her at the same time? I chose to start with the liquid hydrodone. It was the one I was most familiar with. I had given her this medication only 3 times since May and it seemed to be the one with the least amount of potency (I was opposed to giving her medication if she really didn't need it). She hated the taste and I couldn't tell if it was helping her headaches. It took me a few days to realize that the Hydrocodone was probably the cause of her recent bouts of nausea. Rather than give her Hydrocodone and the nausea medicatoin, I decided to switch to hydromorphone and see if that helped. The first night I gave it to her was amazing, within minutes she was back up, just like her normal happy self, playing with her sister and running around. So that was the medication we used the most. The week before we left for Disneyland, I was probably giving her one dose per night.

The airplane ride was easy for her, she enjoyed it because she got to chew bubblegum the whole time, she got Sprite from the flight attendants and she watched the movie Despicable Me on her dvd player. When we landed she was so excited. She grabbed her little bag and walked off the airplane like she was all grown up.

As soon as we got checked into the hotel she had presents to open from a friend of my aunt's. She got some Minnie Mouse pajamas, a Minnie Mouse watch and ears. We got to California later than scheduled so we walked around downtown Disney and ate dinner outdoors at a Mexican restaurant. There were birds around, so Maryn fed them tortilla chips. The more she dropped on the ground, the more birds came to eat by her chair. She loved it. She ran around with her cousins all evening, throwing coins into the fountain and making wishes.

That night Maryn couldn't sleep. She was up all night and I was frustrated and tired. She hadn't slept all day and she usually takes naps like clockwork everyday. I thought maybe she was overtired but that she would calm down eventually. I wondered if this was the restlessness/agitation the hospice nurse had talked about. I texted her and she said to give Maryn some Lorazepam to help her sleep. She said she couldn't sleep at all that night and by the time morning came. I was beyond tired. Maryn went out to enjoy Disneyland the next morning, while I got some much needed sleep. She had an enjoyable time and she got to eat and drink whatever she wanted, which she loved. The whole first day she drank nothing but Sprite and ate cheese quesadillas and chicken nuggets. By 5:30pm she was so sleepy she could hardly stay awake, but I didn't want to have a repeat of the night before, so we tried to keep her awake, but she fell asleep in her stroller anyway. She had a great time her first day at Disneyland. We enjoyed a wonderful 5 days at Disneyland; hopefully, I can go into more detail later about Maryn's experiences.

Hospice and Medication

2011-02-01T15:53:00.054-07:00

The Hospice nurse delivered what seemed like an overwhelming amount of medications for Maryn on Monday, January 3rd. She took the time to explain and write down each medication, its dose and its purpose for me to post on my fridge as a reference for when I might need to give them. She had given me Lorazepam for restlessness/agitation/seizures, and Hydromorphone, Hydrocodone and Oxycodone for pain. Haloperidol for something. I think she mentioned it was medication used on schizophrenic patients. Some were liquids to swallow and some were syringes. She gave me so many, I remember thinking there was no way we would use all of this medication in such a short amount of time. The expiration dates were about a week from the time of delivery to our house. All of the medications required refrigeration, so I stuffed all the bags of medication in the fridge, there were so many I had to dedicate the entire top shelf to all of this.

A few nights later Maryn complained of a headache and had seemed "out of sorts", she was more grumpy and clingier than normal. We were watching cartoons like we did most nights before bed (her favorite thing to do). She told me her head hurt, I asked her where and she pointed to her forehead like she always does when she has a headache, only on this night she also pointed to a spot on the back of her head and started to cry. She has never cried over a headache, ever. I remember opening the fridge where I kept her medicated syringes and liquids. I stood there for about 5 minutes, staring at all of my options with so many questions running through my mind. How did I know which one to give her? Three types of medication for pain, I assumed they weren't all the same, some were probably stronger than others. Which one was I supposed to give to her? Was I just supposed to pick one, any one? What did "restlessness/agitation" look like in a child anyway? Could the "out of sorts" behavior be just from the headache, so was I supposed to just give her that? Could the 3 different types of medication be given to her at the same time? Because I didn't know the answers to all of these questions and hadn't written the nurse's cell number (because I thought I wouldn't need it yet), I chose to start with the liquid hydrodone. It was the one I was most familiar with. I had given her this medication only 3 times since May for headaches and it seemed to be the one with the least amount of potency (I was opposed to giving her medication if she really didn't need it). She hated the taste and I couldn't tell if it was helping her headaches. It took me a few days to realize that the Hydrocodone was probably the cause of her recent bouts of nausea. Rather than give her Hydrocodone and the nausea medication, I decided to switch to hydromorphone and see if that helped. The first night I gave it to her was amazing, within minutes she was back up, just like her normal happy self, playing with her sister and running around. So that was the medication we used the most.

By January 7th, she began to feel slightly feverish, with pain occurring in various parts of her body, her leg, her foot, her knee, her head, random pains everywhere with no outward indication of anything at all. I would check her over and her skin looked completely fine, no redness, scratches or bruising. The nurse instructed me to give Maryn Ibuprofen for the fever and pain medication for her pains. By January 9th, Maryn was complaining of nausea but not vomiting. Her nausea usually occurred in the morning; she would wake up with a headache and a hurting tummy. The nurse instructed me to give Maryn Lorazepam for the nausea and said that she would order some nausea medication to be delivered the same day. We received Zofran aka Ondanestron. She also suggested that I could use the Haloperidol, because I wasn't familiar with it, I chose not to use it. I discovered a couple of days later that the Lorazepam appeared to also nauseate Maryn, so we stuck with using mostly Hydromorphone and occasionally the Zofran.

A couple of days before we left for Disneyland, I had this sick feeling that we would be going just in the nick of time. My intuition was telling me that we didn't have much time left. There was even a moment of panic one night where I thought we might not make the trip at all. I knew I was overly sensitive to everything that was going on with her so I was probably freaking out about nothing.

By the time we left for Disneyland, I was giving her 1-2 doses a day of Hydromorphone. They were small 1 ml syringes, so it wasn't much medication at all. I would usually give one to her every night before bed and sometimes 1 in the morning.

Donations and Flowers

2011-01-27T23:14:00.003-07:00

Annette will be back on her blog soon to share.

For those that are local the Memorial Service will be held on Sunday, Jan. 30th at St. John the Baptist Church, 11800 South 300 East in Draper Utah from 4:30 until 6:30pm. The funeral will be at the same location, St. John the Baptist, at 11:00am on Monday, January 31. Annette is requesting donations in leiu of flowers to assist with funeral costs. Donations can be made at any Mountain America Credit Union in Maryn N. Cellas name or via the "donate now" button on this site.

Annette would like to thank all of you for your words of comfort, tears of grief and prayers of hope that you have offered and shared with her. Thank you.

Precious Maryn went to be with Jesus

2011-01-26T00:21:00.002-07:00

Tonight...beautiful, precious, angel Maryn went to be with Jesus. She was surrounded by family and friends and Annette was cradling her in her arms as she left us. Annette is unable to update her blog right now, but asked us to thank everyone that has prayed for healing and hope, thanks to everyone that have helped in so many ways.

Please continue to pray for Annette and her girls for healing and peace through this difficult time.

How is Maryn doing?

2011-01-12T19:08:00.001-07:00

Everyone keeps asking me this question. She is annoyed that I've been on the computer and not with her, so I will write about her status after she goes to bed tonight.

Disneyland

2011-01-12T18:24:00.002-07:00

We are getting ready to leave for Disneyland soon. Maryn is so unbelievably excited. She has been counting on her fingers the number of days until we leave. I should have taken video but I was too caught up in watching her. She is adorable. The total amount that has been raised as of today is $4,798.28. I am overwhelmed with gratitude at the amount of donations we received. Thank you to everyone who donated! Included in this amount is $1,000 we received from an anonymous donor. Thank you whoever you are. Thank you to Darin & Carrie, Kip & Danell, Steve & Cindie, Neil and Kathleen, Heather and everyone who also donated via Paypal. We also received money from the Firemen & Friends for Kids Foundation, and a $1,000 donation from the Hailey Mayz Foundation. Thank you so much! You can read the story of this "amayzing" little girl who was born too small and for who "things weren't connected right." Thank you to my friend Lisa in California for submitting our story.

I really hate to talk about this but I wanted to let everyone know that whatever money is left over from the trip will be put toward the dreaded but seemingly unavoidable event to come in the future. Thank you all for your love and support! I am trying to figure out how to post photo albums on my blog, so everyone can have some pictures to look at from Disneyland and other events in Maryn's life. Hopefully, this will happen soon!

Back from Dad's

2011-01-02T19:02:00.004-07:00

Maryn finally came back from her dad's today! I was so happy to see my girls. I sure did miss them. She made me a Christmas card and I loved it. She loves to write notes and cards to people, I was thankful to finally be the recipient of one. :)

I have this eye test that I learned from watching her oncologist over the past 18 months. He uses his finger and has Maryn track it from left to right, up and down. I like to do it with her frequently to see how her eyes are doing. When she came home we played the "watch my finger" game. Her eyes moved perfectly up and down and to the left, but when I moved my finger toward the right, she could only track it for a bit and then had to move her head to see it. My heart sunk. I remember when we had the eye appointment with the opthmalogist, her lack of eye movement was pretty severe. He called it a "right hemi neglect". It is not as severe as it was at the time of diagnosis but I can see that it is returning. :( As soon as I finished the "game", she said "I know I'm dying", then she crawled into my lap, started to cry and said, "I don't want to die, I will miss you mommy." I wanted to cry with her, but instead with the happiest voice I could find, I said, "you know what, this isn't our real home. We have another home. We are just staying in this one for a little while, it's just temporary." She looked at me and said, "we do, where is it?" I said, "in heaven, we have a home in heaven and we're all going to live there together someday." Then she said, "you promise?" I said, "yes, I promise." She said, "oh yay!" and jumped off my lap to go play with Moriah. I couldn't believe my answer made her feel better. I was still reeling from what she said. My answer didn't make me feel any better and I know it should have because it's true. However, it did make me feel better to make her happy just as it always does.

Today, she also seems somewhat wobbly on her feet. She hasn't actually fallen over or tripped but I can see that she is not as steady as she used to be. She told me at dinner that she needed me to feed her because "my hand is tired", and she asked to be carried alot today, which she never does. There is also the complaint of headaches which she had before she left to her dad's house.

To everyone else, she would still seem like a normal kid with nothing wrong, but because I'm her mom I notice her symptoms coming on. It breaks my heart completely and I sat here for 45 minutes trying to find the strength to write in my blog. I don't feel like writing anymore, but at the same time I want everyone to know her story and I have tried to be as open and authentic as possible throughout this entire journey, so I will continue to write even though it's really difficult for me.

I had a moment, one of many, over the holidays where I was wallowing self pity and it came to my mind that just as I am grieving over knowing that I will lose my child, so did Mary, knowing that she would lose her son, Jesus Christ, who was totally innocent, and didn't deserve the death he was getting. Even though she knew it was God's will and that he would be in a better place, it didn't take away the pain, the grieving or the sorrow. I don't know why, but for some reason thinking that thought made me feel somewhat better. God designed us to love our children and I'm sure he understands that the emotions of grief, anger, pain, sorrow and every other imaginable emotion are part of the package, because he placed those emotions within us. It is all a part of loving and attachment to another sacred human life. I am grateful I got the chance to know and love my daughter, she brings me so much joy and yet I will always carry the sorrow and grief in my heart for the loss of her, but I do believe that someday we will all be together again. I hope the minutes go by quickly for her in heaven, because I know my hours, days and years here on Earth will seem far too long for me.

I gave her a break from supplements while she was at her dad's but we talked and she wants to start taking them again tomorrow. We will do this for as long as she wants. I don't know that it will help but I'm still praying for a miracle. Maybe it will keep her symptoms at bay, or at least provide her with the least amount of pain possible.

I heard a song on the radio the other day, it reminded of my sweet Maryn and made me cry, of course. Click here if you'd like to listen.

The song is called "Held" by Natalie Grant. Here are the lyrics.

Two months is too little
They let him go
They had no sudden healing.
To think that Providence would
Take a child from his mother
While she prays
Is appalling.
Who told us we'd be rescued?
What has changed and
Why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.
This is what it is to be held
How it feels
When the sacred is torn from your life
and you survive.
This is what it means to be loved
And to know that the promise was
When everything fell we'd be held.
This hand is bitterness
We want to taste it
let the hatred numb our sorrow.
The wise hand opens slowly
to lilies of the valley
and tomorrow.
If hope is born of suffering
If this is only the beginning
Can we not wait for one hour
watching for our Savior?

This song reaches the very depths of my heart and my feelings for my daughter, my sweet beautiful Maryn.

Hospice

2010-12-31T23:40:00.003-07:00

Maryn is still doing well, only having minor headaches from what I understand. She is still at her dad's for Christmas vacation. Now that she is off Burzynski treatment, we no longer receive medical supplies to care for her Broviac line. With a sick feeling in my stomach and not wanting to deal with these kinds of details, I made arrangements for hospice care. I have heard from other parents that it is best to get that relationship established early.

The first call I received was from a male nurse who wanted to set up a time to meet. I told him to please not be offended but there is no way my 5 year old daughter is going to cooperate or feel comfortable with a male nurse. The second nurse hospice sent was similar to our home health nurse, whom we and Maryn love so much. She has become a very close friend over the past 18 months, and we consider her family. I met with the hospice nurse this week and discussed the concerns that I had heard other parents discuss regarding brain tumor patients. She answered all of my questions and was very knowledgeable. She then asked me about what I would like to do regarding all sorts of issues, resuscitate or not, feeding tube or not, there were so many items that I lost track, as I could no longer see the form we were filling out through the tears in my eyes.

She then asked about funeral arrangements and I got sick. God, I do not want to be dealing with this stuff, it is so unfair. I wish I could make it all go away. I am glad that I had the chance to deal with this while Maryn is gone, so she doesn't have to see me cry. In fact, it's been good she has been gone this whole week because that's all I've done is cry. I was putting away Christmas and organizing the house when I came across her baptism dress which I haven't seen in years. It still had spit up on it. My first thought was to have it drycleaned, my second thought was to leave it exactly as it is and I hugged it, cried and put it in my special "Maryn" box that my friend made me for Christmas.

I turned our family room into a playroom. I gathered up every coloring book, puzzle, craft item, paints, etc. that I could find and put it out in the open. I don't care about "paper over this", "paper under that", "only the table", "only outside" anymore. We're going to do it inside, make all kinds of messes and have a whole lot of fun. Because she is no longer on her medicine I won't have to tell her "one minute", "hold on", "not right now", "mommy can't" anymore, which is good because I was growing resentful of those who didn't give a second thought to her medical treatment or diet and were just having fun with her while I was doing all the work. My only hope is that when we are reunited someday, she will know how much I truly loved her. She is my baby, my last child, and there will never be another for me.

Oh, by the way, it's midnight,HAPPY NEW YEAR!!!

Christmastime 2010

2010-12-31T22:39:00.007-07:00

Sorry for the delay in posting updates on Maryn. It's been a tough week for me and I couldn't bear the thought of putting into words what was happening in our lives. My health the past several months has not been good. I'm constantly getting sick and feel fatigued and achy all the time. On Christmas Eve (exactly one week ago today), I made the difficult and very painful decision to take Maryn off the Burzynski treatment. After 13 months of giving her this treatment on my own, I just couldn't do it anymore. I'm burnt out mentally, physically and emotionally. I've not been a good mother or an effective parent to Olivia and Moriah and my stress has taken it's toll on them. I would give my life if I could save Maryn, but since God hasn't seen fit to let things turn out that way, we are all suffering. I've had to choose living since I'm not dying. I can no longer be in this place where I'm just existing. I wish I had more strength in me, more long-suffering, more energy, more determination, more of anything, but I don't.

The day before Christmas Eve, we had an appointment with Maryn's oncologist. I don't know if I wasn't listening or if they chose not to tell me that her tumor had grown 40% at the November MRI, but it hit home today in the doctor's office. I had been thinking of stopping her treatment since September when I knew I couldn't last any longer, but this conversation with the doctor helped me to make my decision.

It's been a rough week, the first few days were great, we enjoyed Christmas and just being together. I'll never forget the smile on her face being surrounded in a sea of wrapping paper, opening all her presents and squealing when she got a stuffed animal. She LOVES stuffed animals more than anything.

I spent the rest of Christmas Day feeling sick and was glad their dad came to get them Sunday for his holiday week. I got progressively worse until it was apparent that I had bronchitis and could barely breathe or walk. It's been 7 days and I'm feeling physically better, but still dealing with the sad reality that I simply cannot save my child.

I want to clarify a few things about the Burzynski treatment for those that may have questions. I do believe that the treatment works, it has merit. When I had Maryn on treatment at the right dose, the most aggressive portion of her tumor disappeared and her case was reported to the FDA as having a "complete response." When I began to suffer from exhaustion in September and was inconsistent with her treatment and dosages that is when her tumor began to come back. I understand the treatment doesn't work on every child, but it was working on my child until I stopped giving it consistently. I believe the problem lies with the way the medication has to be given and it's side effects. The treatment is VERY time intensive. Every single day, I would need to prepare new bags of medicine, and reprogram her pump, which takes about 45 minutes. I had to draw her blood and drive it to the hospital 3 times a week, which takes another hour or so. Plus I was up with her every single night getting her water and taking her to the bathroom several times because the side effects are thirst and urination. It is difficult to keep up this 24 hour a day 7 day week schedule, especially for a single parent raising 2 other children on her own and trying to let them lead as normal a life as possible. So while I believe the Burzynski treatment works, I don't believe it is humanly possible for anyone, especially a child, to stay on the treatment for any length of time.

I have always loved Christmastime and would get excited for the holidays every year, but not this year. It was too depressing to know this would be my last Christmas with Maryn. We still did the things we love to do, and Maryn was happy but there was no joy in it for me. I would have mentally forced myself to have some joy, but my emotions just wouldn't cooperate. Of course, I felt joy watching Maryn and the girls happily baking cookies or enjoying the ride on the North Pole Express or seeing the Nutcracker, but it all felt so hollow to me. It's an absolutely horrible feeling to have such separateness of emotion. It's the "knowing" of what's to come that can kill a soul. I've decided that if I ever get cancer, I don't want to know. I would never want to put my family through the hell of knowing of what's to come. I know that the extra time we have gotten to spend with Maryn is a gift from God, but it sure did come in crappy wrapping paper.

P.S. I want to thank everyone who made this such an amazing Christmas for my girls. Santa paid us a visit personally bringing lots of love and gifts. I want to thank all my wonderful girlfriends too, for being there for me and making Christmas as happy as they could for me also. You are all amazing friends and I love you so much. My friendships are truly my blessing on this earth. I also want to thank Point of Hope and Deron Williams for sharing Christmas dinner with many single moms and kids, including us and for giving every child more presents than they could carry out of the restaurant. So much has happened over the holidays, I should have been blogging everyday but we were too busy having fun!

Update

2010-12-06T16:59:00.002-07:00

Maryn has a Christmas preschool program tonight. So far, she is not showing any symptoms and still continuing with all of her normal activities.

Thank you to everyone who has donated for Maryn's trip to Disneyland. So far we have raised $467.32. I will update with video when I return tonight. She thinks she is Mrs. Santa Clause because she has a red and white dress and a Santa hat. So cute!

MRI November 17, 2010

2010-11-18T13:50:00.005-07:00

Maryn had another MRI yesterday. I'm heartbroken to say that it has grown, although in my heart I knew this. She began twitching, talking and crying in her sleep about 2 weeks ago. These were the first symptoms she had in 2009. Here is a summary of her tumor size, starting with the day she was diagnosed with Diffuse Instrinsic Pontine Glioma.

June 17, 2009 4.0 cm x 3.1 cm x 2.9 cm

September 5, 2009 2.32 cm x 1.71 cm x 1.51 cm

November 17, 2010 3.7 cm x 3.5 cm x 3.5 cm

There is a mild compression of the 4th ventricle in the brain but it is stable. Currently, her fluids are able to move about inside her brain with no difficulty. As of today, Maryn shows no symptoms at all while awake. The doctor said that we should begin to see symptoms return within the next month, and that she has approximately less than 4 months left. Within two months, it is expected that the tumor will be bigger than its original size. We discussed what other options are available to Maryn, keeping in mind that I want to give her the best quality of life possible. I told the doctor that I would rather have Maryn go out on "butterflies and rainbows" rather than a miserable existence with hospital stays and daily sickness. I will not extend her life if she is miserable for my own selfish reasons. I love her deeply and wish I could keep her with me always, but not if she is suffering. Above all, I want there to be no suffering. He agreed (she has the best doctor in the world, by the way). :) We talked about the toxicity of chemotherapies and how, in the end, they just don't work. We then discussed the possibility of re-radiating the tumor, which could extend Maryn's life by 3 - 6 months. There could be possible risks with doing this, but it would be the least harmful of all our options. Her doctor said he would meet with the board and get back with me with an answer, whether or not it's a possibility.

I sat there in the exam room chair as I have a million times before, calm today, not crying, but with a lump in my throat, feeling like I was going to be sick. Four months? This is unreal. So now I have more decisions to make.

Throughout this whole journey I have realized many things. One, you NEVER know what life is going to hand you.

Two, sometimes God DOES give you more than you can handle; burdens that are too heavy to bear. People who say that "God never gives you more than you can handle", have never experienced a truly heartbreaking, life shattering experience. In the end, it all comes down to choice, that is the gift that God gives us. We can face our trial head on and deal with it, or we can choose to quit and run (which I've considered many times). My burden nearly unstitched me from the inside out, I was brought to the brink and nearly undone. I can understand how people fall into the trap of drugs and alcohol. Several times over the past 18 months, I just wanted the pain to go away. I could have chosen to go down that road easily. In the end, the choice was mine, I had to learn to let go of what I was clinging so desperately to (fear of losing a child) and grab onto what was true; that she would be in a better place and that I would be with her again someday. It was my own selfishness that made my burden too much to bear.

Maryn asked me yesterday, "mommy, am I gonna die?" I didn't answer her the first 5 times that she asked me. Thinking, "God what do I say to her?" She trusts me so much and I didn't want her to lose that, so I told her "probably honey." She looked at me through the rearview mirror, strapped into her carseat and said, "oh, sad, I don't wanna die." I said, "I don't want you to either sweetheart. It is so sad." Then she started singing to the Christmas music playing on the radio, because she is very ready for Christmas. I watched her today in the exam room at the doctor's office, playing with her Aunt Kitty, drawing funny things on the dry erase board and giggling, so happy and looking so healthy. She is such a courageous soul, an unsung hero and such an example of love and light and everything good in this world. I have learned so much from her. It is still so unbelievable.

I would have given my life for her, and indeed I did. I gave all I had with every fiber of my being, every day for the past 17 months. I would still give my life, either in living or in dying if I thought it would save her. I am so happy that God gave her the gift of a symptom free existence for so long. She wanted to live life as a normal kid and she has. She goes to preschool, attends dance/tumbling and piano classes, plays with friends, has sleepovers and every other normal thing she can possibly dream of.

I am planning some fun things over the next two months. We went to Disney on Ice last Saturday, we are going to the Nutcracker in December and on the Polar Express and hopefully, I can get a trip to Disneyland in before the end of January.

Right now, she is still on Burzynski treatment and I am looking for a mother's helper during the week so I can resume some of her other dietary and alternative treatments, in the hopes of achieving the impossible. If the end of December shows continued growth, we will likely stop all treatments and begin the planning stages for the inevitable, while still playing and enjoying life as much as we can. Such a strange scenario.

I need to thank all of the people who have been so wonderful throughout all of this, who helped make Maryn's gift of extended life possible and who provided so much love and support throughout all of this. I have learned who my true friends are, another life lesson, (you know who you are). We are like family now and words can never express how thankful I am and how blessed I am to have you in my life.

Preschool Halloween Program

2010-10-29T17:45:00.065-06:00

Maryn had her preschool Halloween program today. She was Princess Belle. She had a great time and gave a wonderful performance. Hooray for me I'm learning to attach videos and photos! So here you go! Enjoy (it's long, however). :)

Maryn's Birthday

2010-10-29T17:40:00.002-06:00

Maryn's Birthday was October 20th. She turned 5 and it's a miracle! I couldn't post that week as we were busy with friends, family, parties and playing. She was very happy and said she got everything she wanted for her birthday. She got to ride a pony, pet a donkey and some 'cute" baby goats. She wanted to eat at the Mayan Restaurant and watch the divers, which we did and she got some great toys. She was 3 years old when she diagnosed, we were told she wouldn't live past 4 and here she is at 5 and symptom free! Yay! Go Maryn~!

SUNDAY FUNDRAISER

2010-10-08T00:34:00.003-06:00

We are having a Kickball Fundraiser for Maryn this Sunday at Draper Park. There is a minimum $5 donation. Bring your family, get active and have some fun. We look forward to seeing you there. Thank you so much to everyone who has supported, prayed for and helped Maryn and our family over the past 16 months. She is a fighter and still going strong. This month is also her birthday and she will be 5! It is a miracle because we were told she wouldn't live to see this day. She is growing up so fast. She told me the other day while driving in the car, "mom, sometimes you just don't understand me." I love every minute of every day with her. Thank you for everything you have done for Maryn and our family.

MRI Update

2010-09-21T20:20:00.008-06:00

Maryn had her MRI on September 8th, 2010. Her scan showed that the tumor had some growth and a slight "impingement on the 4th ventricle." I knew that something was different and possibly not good this time. Her scan usually takes about 45 minutes but this time the nurse said the radiologist wanted some extra images, she then asked questions, "when did she last have radiation?" "What treatment is she currently on?", etc. I felt a knot in the pit of my stomach. It's been 10 months since she has been on her treatment from the Burzynski Clinic. Ten months of sleepless nights and pure exhaustion. I knew I was burnt out mentally, emotionally and physically and that I wouldn't be able to do this anymore. I have struggled with making this decision for the past two months. I knew that everything I have done is working, I knew what needed to be done, I just didn't have the energy to do it anymore, so I took a slight break from all of her treatments. I was hoping and praying that there would be no growth, so I could at least cut someof her treatments out of our daily routine, but the scan showed otherwise and I knew I needed to continue in order to save her. The struggle was that I knew I just couldn't do it anymore.

I cried in the doctor's office. I explained that I haven't had any support from anyone since we returned from Texas, 10 months ago and that I couldn't do it anymore. I felt confident that he would tell me it's ok that I don't need to continue her treatments because it won't make a difference anyway. I needed someone to tell me it was ok not to fight anymore. I told him I couldn't handle the stress of having the people around Maryn, not only be unsupportive but deliberate in interfering with her treatment and diet that has been working for her. The constant stress of having people tell me to just let her eat what she wants with no regard for health has gotten to be too much for me. I was astounded and angry that they wouldn't want Maryn to have a good quality of life where she can run and play like the others kids, she has been so blessed to have this gift. The only downside in all of this is she doesn't get to eat junk food constantly, but neither do my other kids, so why would I treat Maryn any differently? I truly believe that food can either heal or kill a person and if the tumor was going to take her life that was one thing, but I wasn't going to help it by feeding her garbage that I knew would make things worse for her.

I waited for the doctor to give me words of comfort, tell me it was ok to stop everything when much to my surprise, he said that I should keep doing everything I've been doing because it is a miracle that she has come this far with not one symptom. I went home and cried and slept most of the afternoon. I couldn't bear to write in my blog or FB or take phone calls or anything. I knew I had to meet my sister at my niece's grave at 3 o'clock because today was her birthday. Maryn had gone with her dad for the afternoon. It was sunny, hot and very windy at her gravesite. I stood next to her grave with my sunglasses on, contacts blurry from tears all day, and sang Happy Birthday to her with my family. It was ironic for me that here I was standing over someone we loved, whom we wouldn't see again in this lifetime. I was heartbroken because I knew I couldn't fight anymore and that someday this could be me with my child and I thought I would die of a broken heart right there in the cemetery. We released her balloons which the wind carried up and away until they were nothing but dots in the sky, and I wondered if that's how God sees me, just a dot. I've been waiting for him to step into my life, to save me and my children from all this pain and suffering, but it seems that day after day he doesn't hear my prayers.

Later that afternoon I finally called two people I knew I could trust, who would still love me at my worst, blubbering, teary-eyed and not making any sense. They both said they had no idea I didn't have any help and they would do what they could to get things rolling again. It's been almost 2 weeks, I've had several people call and visit to help get things organized and I realized that part of me not having any support over the past 10 months is because I didn't let people know I still needed help. I realized that I have a hard time asking for help, so when a lady called to ask how long I would need help, I felt guilty to say it would ongoing, maybe a year. She happily said that was no problem. I've had women come over and clean my house, do my laundry and we have meals coming starting tomorrow. I've been so amazed because the women who cleaned my house today did far more than I asked them to and they were more than happy to do it! I'm finally starting to feel God's love in my life again and realized that if I need something I need to open my mouth and say something. Lucky for me, this time I have two really great, close friends who will take charge and get things rolling for me.

Throughout all of this I am still having to deal with issues stemming from my divorce. It's been over 4 years and on top of the stress of having a child with cancer and being a single parent to 3 kids, I still have to deal with the antics from the other side. Four years ago a judge decided that I would have sole, legal and physical custody of my children. Their dad was out of the country for the first 2 years after the divorce. Upon his return he decided he wanted custody, because our divorce had been bifurcated so that he could remarry, all custody and financial issues had not been finalized. He did all sorts of nasty things to try and get custody, such as calling DCFS to say I was mistreating my children and doing all sorts of illegal things. The DCFS agent then pulled only one of my children out of school for an interview. I didn't find out until later that afternoon when they called to request an in-home visit. I was furious they had not notified me and my daughter was clearly shaken by the experience, so she stayed home from school the next day. The state representative did his interview and determined that I was a more than fit parent and apologized for the inconvenience.

For 4 years, I've put up with nasty text messages, threats and all out attempts to disparage me in my children's eyes so they wouldn't want to live with me. I would send my children away to their dad's for the weekend, happy and well adjusted and they would return home to me angry and hostile towards me. After a few times of this, I finally got my children to open up to me. They told me about all the horrible things that were being said about me by their other side of the family. I told them not to worry about it, that just because someone says it, doesn't make it true. I told them it's not their job to worry about what goes on or has gone between their dad and I and they need to let it go in one ear and out the other. Inside I was fuming because he was hurting the children and he didn't care. I knew from past experience that I could not approach him about this because he would just make life hard for the children the next time they went up there.

So many things have happened over the past 4 years, too many to explain, so I will jump to this past weekend. My daughter came home from her dad's, she seemed fine, but within 30 minutes was saying that she wanted to move up there with him. I was so exhausted from hearing this after every visitation that in a moment of weakness I told her she could go. It took about 30 minutes for me to get my wits about me when I finally told her, you're not going, you belong here with me. The judge decided that I was the parent best suited to take care of you and so you will stay with me. She cried in my arms and said she was sorry, that she was so confused because her dad promised her he would buy her a pony (which she wants desperately) if she moved up there, and that he would let her decorate her room. All she had to do was move in with him.

She told me that she then remembered what he had said about disciplining her, that if he and his wife wanted to kick her or hit her, they could do whatever they want to her whenever they want, and that she didn't want to live up there because they are mean. This was not the first time I had heard my kids say this about being up at their dad's house. In the past I had done everything I was legally supposed to do, but no one, not the state or judge's or any agency for that matter, will do anything about it. I told her that she knows she belongs with me, that I have always kept her and her sisters safe and I will continue to do so.

We had an incident a few weeks before where her dad had promised to take her to a football game the following weekend, so the next weekend she called and asked what time he would pick her up that Saturday. Without so much as an apology, he told her that he gave the tickets away to a friend. She was so hurt and angry, she tried to talk to him the best that an angry 10-year old can and he hung up on her. She called back 3 times, each time he would answer the phone, listen but not say anything then hang up on her. By the 4th time she was so mad that she sent him some text messages from my phone, saying that she wasn't coming up there ever again and something like "pumpkin eater pumpkin eater, you're a lady cheater." He didn't call or talk to her or the girls that whole following week. When they went up there this past weekend, he had saved the text messages that she sent him. He printed them out and made her read them in front of his entire family. She said he told her to come into the room where everyone was, and made her stand there and read the texts to everyone. She cried and said she didn't want to. He completely humiliated and hurt her. I get so angry that my children have to endure the emotional and mental abuse that goes on when they are up there. I am absolutely helpless as to what to do. They love their dad and want to be him, all they want is for him to love them. I learned after being married to him for 13 years, that he simply doesn't know how to love another person. He thinks that the way he disciplines his kids i.e., berating, belittling, calling names, kicking, pushing, locking in dark rooms, etc., is good parenting. I don't know what to do, I just know that it's never going to stop and the only ones that are getting hurt in this process are 3 innocent girls who didn't ask for any of what's gone in their short lives.

I tried to talk to him about this tonight. I merely asked if he would refrain from making promises so that the girls would want to live with him because it confuses them and he said, "I am not having this conversation with you!" So, unfortunately, things are still status quo. We've never been able to communicate and work together for the sake of the kids and we never will.

The one question I ask myself is, why can't he stop? Why can't he stop just for one moment and think about the kids and what they're going through. We're over here trying to save a life and he is still trying to tear our family apart. One thing I know is that he will never be FOR us but always a FORCE against us. Sad as it is, this is our reality. I need to go make Maryn's medicine now. I have decided that I am going to blog everything that goes on in my life from now on, no more secrets, so you should be seeing daily blogs from now on. Good night!

Childhood Cancer Awareness Month

2010-09-19T08:27:00.004-06:00

September is Childhood Cancer Awareness Month. Did you know that cancer is the most common cause of disease-related mortality for children 1-19 years of age? Did you know that only 5% of cancers are genetic and the other 95% are environmental?

I believe with all my heart that Maryn's cancer is due to environmental causes. I feel compelled to raise awareness for the connection between the environment and childhood cancer. Children's bodies are small, their immune systems are immature, so what may not affect us as adults can be disastrous for a child. The skin is the largest organ on the human body, please remember to read the ingredients before you spray or lotion your child or your grandchild; even products that are supposed to be baby friendly contain cancer-causing chemicals.

Toxins in the environment can get inside your child 3 ways; through their mouth (what they eat and drink), through their skin (what they bathe in and play in) and through the nose (what they breathe). I could talk for hours about this, maybe someday I will, but for now please do what you can to help your child live in a toxic-free environment.

I have added a new page on Facebook and Twitter, you can also follow me there under the name breathegreen2.

Remember, September is Childhood Cancer Awareness Month. Please be aware, and care.

Toxic Chemicals Safety Act

2010-07-23T22:28:00.004-06:00

Ever since Maryn was diagnosed last year, I have learned so much about toxins in our food and our environment. I am a huge supporter of the Environmental Working Group. They work tirelessly to bring about change so that we can have healthier lives.

As of today, H.R. 5820, the Toxic Chemicals Safety Act has been introduced into the House of Representatives. Toxic reform is now moving through both houses of Congress. We need companies to PROVE their chemicals are safe BEFORE they hit the supermarket shelves and end up in our homes and on our children's bodies.

100,000 signatures are needed to put power behind this bill. Please take a moment to sign this bill if you know someone with cancer. Don't let companies whose only bottom line is money, steal the life of your loved ones by putting toxic chemicals in our products. If we don't care about ourselves, no one is going to do it for us. Please sign and remember children like Maryn who fight daily for their lives. Also remember only 5% of cancers are genetic, the other 95% are environmental. Think about that while you sleep on your fire retardant sprayed mattress, which contains formaldehyde, benzene and, in some cases, PBDE. Let's make a difference.

Please sign this petition. http://www.ewg.org/kid-safe-chemicals-act-blog/sign-petition-b/

This was taken from my Facebook post. Please send this to everyone you know. Let's make a better future for us and for our children and grandchildren.

News from Texas

2010-07-23T22:28:00.001-06:00

I spoke with the Burzynski Clinic today. They received Maryn's MRI scan as they do every two months. According to the doctors, Maryn has had a "complete response" to the medication. They stated there is no sign of the aggressive portion of the tumor at all, indicating there is no tumor activity and it is quite possible that the outer portion of the tumor is dead. I started to cry when they told me this. It made the last 12 months of hell that my family has been through, totally and completely worth it.

They did say that Maryn would need to continue on treatment for awhile longer, because MRI machines can only pick up tumors that have more than 10 billion cells, so there is a chance some remaining cancer cells are left. We are not out of the woods yet but I see a light in the distance and hope gets brighter everyday. I love my little more than life itself and even if this treatment didn't work, it was all worth it because I have been blessed with an extra year and hopefully more with her. I do believe in miracles. Praise and thank you God

MRI Results

2010-07-15T22:31:00.003-06:00

Maryn's MRI results show her tumor is stable, no change, which is fantastic news to me! She is doing great, still not having any symptoms. Occasionally, her medication makes her tummy nauseous but, for the most part, she is having a completely normal life, which is what I wanted for her. We have finally been able to move past her illness and get back to life as we know it. It was very difficult for me to discipline her in the beginning and she was showing signs of turning into a little monster. :) I have finally come to the place where I am ok with treating her like a normal kid. She had a tantrum the other day; she was screaming at the top of her lungs and threw a magazine at me. I swatted her on the bum and put her in timeout. When she was done, she came to tell me she was sorry. I picked her up and she wrapped her arms around my neck and her legs around my waist like a little monkey, burying her face in the side of my neck. At the moment, I felt the completeness of my life. I told her how happy I am to be her mommy. All of the struggles we have experienced over the past year have been totally worth it, because she is still here, able to enjoy her childhood and I still get to enjoy the experience of being her mother and raising her. I think she is the most adorable little person I have ever known. She is an amazing soul, wise beyond her years and funnier than most people I know. She LOVES to tell me stories, so I get an earful everyday which I love. She has such a creative imagination.

We are going to a funeral on Saturday. Sadly, my niece passed away this week. Maryn talked about her cousin being in heaven with God and how she is happy up there. She is so smart and insightful. My heart is completely broken for my sister and I can't stop crying over this. Crystal will be terribly missed. I still believe a mother should never have to bury her child, but there is some, even if it's a little, comfort in knowing the child is in a better place. I learned sometime after Maryn was diagnosed with cancer; that the grieving is not for those who pass, for we know the next life is much better than this one. The grieving is for those who are left behind. We are the ones with unfinished business.

I used to think that I would have rather had Maryn go quickly because the daily pain of knowing what the future holds for us, was almost too much bear. There were days I thought I would surely die of a broken heart, just from knowing. However, I quickly realized how grateful I am that God has given me this gift of an extra year with Maryn. I am no longer angry with Him, but instead so thankful for every moment we have together, whether its a year, 5 years or 10 or forever. My struggle was in finding a way to get back to a normal life. It's not completely normal, but it's normal for us. Olivia and Moriah have adjusted very well. They are such amazing girls and I am blessed to be their mother.

I have received advice from different people who have said I should take Maryn lots of different places, on many vacations, etc., but I have found and believe, Maryn is the happiest living life as a regular kid, wasting away her summer days playing with the hose, splashing in the pool, playing with her sister, going to the park, jumping on the trampoline, playing dress up, cooking with her older sister (she loves to make stuff) and riding her bike and her scooter.

She will start preschool in the fall. She loves to make arts and crafts and loves to dance. I think I have found a fine arts preschool for her. I have also been blessed to have met and become friends with Michael. He runs a non profit organization called Seven Still Waters, which helps children of single mothers and families who have children with life threatening illnesses. They have offered to pay for Maryn's preschool, as well as an afterschool activity for each of my daughters. I am so grateful because I wasn't sure how I was going to make this happen for my girls. They are all excited and looking forward to the their chosen activity this school year. I am mentally preparing myself for all the driving. :)

Every time Maryn has an MRI, I change up her routine and try something new. Tomorrow we start a new plan and I have two months before her next MRI. I hope that eventually I will find something that works in conjunction with her treatment that will finally kill the beast inside her head. I've pretty much tried everything, some things I will continue to do and some things I will change. My goal throughout all of this is to try to listen to and honor her body and what it tells me by the way she looks, her overall health and any physical symptoms or complaints she might have. I feel like I'm blindfolded and she is leading me because honestly, I don't know what I'm doing and whether or not any of it will work, so all I have is her to lead me and guide me.

I am planning a fundraiser for Maryn with a target date of the first weekend in October. I am looking for volunteers. I have a few so far but am looking for more. There is another child that lives in Draper who might go to Burzynski, if the family chooses to do this, then I would like to have the fundraiser for him also. If anyone is interested in volunteering please let me know.

Thank you for reading my blog, sorry I don't post much these days. I have alot going on over here, the days fly by before I can catch a breath, but I'm loving our life, we are all still here together and making it work. Good night.

MRI Tomorrow

2010-07-13T11:33:00.004-06:00

Maryn has another MRI tomorrow. I am continuing to pray and hope for miraculous results, more shrinkage. Please keep her in your prayers. She is still doing extremely well, she is completely symptom free and running around like a normal kid. It has been over a year for us; we have adjusted to life and found happiness again.

Maryn's Miracle Barn Dance Benefit Concert - The Miracle Continues!!

2010-05-25T12:28:00.027-06:00

Come kick up your heels and do a
little boot scoot boogy with us at
A Benefit Barn
Dance and Concert
featuring the
Andy Browning Band -
this Thursday night from 7pm to 10pm at the Wheeler Farm Barn.

All proceeds will go to help sweet Maryn Cella, a 4 year old diagnosed with an inoperable brain tumor last June. She is receiving FDA Clinical Trial Medication along with a special raw foods and supplements diet costing over $10,000 per month.... They are saving her life! Her tumor is shrinking and she is out living, in fact, she is thriving past the 9 to 12 months the doctors gave her to live.
She is an amazing fighter with a super single mom!

Come be part of one of the most beautiful miracles on earth -
the gift of life!

Great Music, Friends, a Community coming together!
Suggested donation is $15 per person at the door.

Preorder your tickets for only $12 at www.marynsmiraclebarndancebenefitconcert.eventbrite.com/

Fantastic sloppy joes, hot dogs, chips, soda, potatoe salad and cookies available for only $5.
All dinner proceeds will go to Maryn.

Sponsored by:

www.andybrowningband.com

www.MyDivaDeals.com

ww w.wheelerfarm.com

Coconut Peanut Butter Granola

2010-05-07T20:10:00.002-06:00

1/3 cup raw honey

1/2 cup crunchy peanut (organic)

1 tsp. coconut cream

1/4 cup coconut oil

1 3/4 cups quick oats

1/4 cup regular rolled oats

3/4 cup coconut flakes (no sulphur)

Preheat oven to 275 degrees.

Put all ingredients except oatmeal and coconut in saucepan on low heat and mix until smooth. Add oatmeal and coconut flakes. Stir until thoroughly mixed.

Spread on cookie sheet and put in preheated oven for 10 minutes, stir and move around and then put back in oven for 10 more minutes. Let cool.

Eat as granola or put in bowl and eat with milk.

Coconut Baked Salmon

2010-05-07T20:02:00.002-06:00

4 fillets Wild (not farmed) Alaskan Salmon

1/3 cup Coconut Oil (look for Organic)

Onion Powder

Garlic Powder

Sea Salt

Lemon Pepper

Rice

Preheat oven to 350 degrees. Remove pin bones, if any and place fillet skin down in glass baking dish.

Soften (but don't melt) coconut oil and spread over salmon*

Sprinkle fillets with seasonings to taste.

Bake uncovered 40-60 minutes or until done.

Serve over rice. I also take frozen blueberries, thawed, puree them and pour over salmon. My kids love it!

If you must use a microwave (which I don't recommend) to soft the coconut oil, please make sure you use a glass dish or bowl. Never use plastics in the microwave. Plastics are a cancer causing substance and when heated the chemicals leech into the food.

Recipes

2010-05-07T19:59:00.001-06:00

I've been asked several times for some of the recipes I use for Maryn and our family, so I have decided to post them here. Some are recipes I've found and modified and some I've created on my own. I hope you enjoy them. If you do try them, I would love feedback. I have changed my settings and am accepting comments on my blog again. Thank you for reading.

Earth Day (April 22, 2010)

2010-05-06T14:41:00.008-06:00

Today is Earth Day, the holiday which has been designated to honor and take action for the environmental issues that plague our planet. I am in support of Earth Day, but since I have been thrown into a completely different place in life over the past year, I have some concerns. When do we begin to take action against the pollution that is put into our bodies? When do we begin to honor ourselves as human beings? Are our bodies not as important as the Earth, are we not more fragile, do our lives not suffer immediate and sometimes, extremely painful, consequences of body pollution? When do we begin to demand that we, as human beings, are protected from toxic substances entering our bodies.

The Toxic Substances Control Act of 1976 is a law designed to regulate potentially dangerous chemicals in the environment. It requires that the Environmental Protection Agency (EPA) prove that a chemical is toxic to humans before it can regulate that chemical. It also requires "that any person who manufactures (including imports), processes, or distributes in commerce, a chemical substance or mixture and who obtains information which reasonably supports the conclusion that such substance or mixture presents a substantial risk of injury to health or the environment to inform the EPA.......for the past decade the EPA has focused efforts on protecting citizens from existing chemicals by making basic screening level toxicity on them publicly available." Substances excluded from this act include food, drugs, cosmetics and pesticides.

This is a law that provides no real protection to the consumer. I believe that, instead of having to prove a chemical is toxic before removing it from the market, manufacturers should be required to prove the product is safe for humans BEFORE it enters the market. This law is backwards and provides no protection for people, especially children, who have no voice and are unable to protect themselves.

I have believed from the beginning, and still do, that Maryn's tumor is a result of something in her environment. I, initially, suspected every piece of food, she has ever put in her mouth. Was it hormones and other chemicals found in meat and dairy products, particularly cheese, because that's what she loved and ate the most? Was it pesticides that didn't get completely washed off her fruits and vegetables? Could it be something in the air in our home, or coming from our tap water? Was it the lawn fertilizer, fluoride in her toothpaste, etc.? I've spent the past 11 months, researching everything imaginable. I know that finding the cause won't cure Maryn, but I am hoping that it can save other children from going through this nightmare.

I was talking with my sister a few weeks ago about what other possibilities in our environment could be responsible for making Maryn sick. We decided that I should research her memory foam mattress, because she bought it last year and said she has been getting alot of headaches ever since. Maryn used to sleep in that bed whenever my sister would babysit.

Once I began my research, I was astonished to find out that memory foam mattresses are combustible and so manufacturers are required to spray these mattresses with fire retardant chemicals. There was one chemical, PBDE that was so toxic it was finally banned in July 2005. These chemicals are released into the air of our homes and into our noses and mouths while we sleep for 8 to 12 hours every single day of our lives. Tests have shown that these chemicals may be especially toxic to kids, whose bodies are small, and so the chemicals build up and reach toxic levels quicker and easier than in adults.

Some of the side effects of sleeping on mattresses sprayed with fire retardants are headache, nausea, insomnia, irritability, smell that permeates the room and sleeping hot. It was at this moment that my memory flashed back to 4 years ago when my ex-husband and I purchased our new mattress, right around the time Maryn was born. I remember waking up and night and jumping out of bed because it was too hot to sleep in. I then realized that I too must have a memory foam bed. It was around midnight and Maryn was sleeping in it, as she has every night for the past 4 years. I wanted to rip the sheets off it to find the label and see what it was made of, but I didn't want to wake her so I would have to wait until morning. I felt sick. What if this was the cause? This was the one and only piece of furniture that I have kept since my divorce. I thought about how strange life is, to rearrange everything from the food we eat, the water we drink, buying organic fruits and vegetables, removing all plastics and cleaning chemicals from our home, thinking that I am doing everything possible to keep our home environment clean and chemical free, only to realize that the mattress we sleep on was sprayed with several toxic chemicals and we were not notified of this fact at the time we bought the mattress set.

I was angry that manufacturers were allowed to spray items that enter into our homes and not notify the consumer. Over the next few weeks, I searched for as much information as I could find regarding fire retardants and mattresses. I learned that as of 2007, ALL mattresses were required to contain enough fire retardant to withstand a 2 foot wide blowtorch open flame for 70 seconds.

I also discovered that there are several more hazardous chemicals contained in these fire retardants:

Boric Acid is a reproductive and developmental toxin that is used as a pesticide.

Antimony causes heart and lung damage and is a possible carcinogen (cancer causing).

Decabromodiphenyl Oxide causes hair and memory loss and is also a possible carcinogen.

These are just some of the chemicals found in fire retardants sprayed on mattresses, there are many others, including formaldehyde which is known to cause cancer. One source said that "people exposed to certain chemicals, such as petrochemicals, pesticides and formaldehyde appear to be at higher risk for developing a malignant brain tumor than those who are not exposed." Fire retardant chemicals seep through mattress covers into the air we breathe and are absorbed through the skin while sleeping. Maryn has spent at least 8 to 12 hours per day sleeping on my mattress since the day she was born.

I believe that I, as a consumer, should have the right to decide whether or not I want to purchase a mattress containing toxic chemicals versus one that is chemical free. I should be given the right to decide whether or not I want to accept the risk that comes with the possibility of my mattress catching on fire, or accepting the risk of increasing my family's probability of getting cancer by purchasing a toxic mattress.

My hope is that one day we will have a holiday to recognize our value and importance as human beings, to value our health as being the top priority. I believe adults are capable of making their own choices by allowing chemicals to enter their bodies i.e., smoking, etc., but children are the real victims here. They're too young to have a voice of their own, to protect themselves from harmful toxins going into their small bodies. I hope, pray and dream of a safer tomorrow for our future babies, kids and grandkids.

By the way, Maryn is doing extremely well. She had a little problem with her medicine a couple of weeks ago, but I got it straightened and she is doing really great. She is still completely symptom free, happy and playful.

Update

2010-04-13T22:36:00.004-06:00

We've had quite an interesting time since Easter Sunday. Moriah was playing on the trampoline on Easter and somehow hurt her knee. We took her to the doctor the next day (Monday) who said she needed x-rays. We were headed up to Primary Children's Hospital for Maryn's scheduled appointment, so we had her xrays done while we were there. By the time we arrived back home the doctor had called to say an appointment had been scheduled for Tuesday to see a knee specialist. About an hour after we were home, the girls noticed that our kitty was missing. We looked all over the house for her, inside and outside. There was no sign of her anywhere. They were very upset. I told them that she was fine and that someone probably picked her up, and she is safe and warm in someone's house.

I woke up the next morning and drove around the neighborhood looking for kitty. I went to the Draper shelter, then Sandy, then Midvale. I went home and picked Moriah up for her doctor appointment. She had chipped the bone off the bottom of her kneecap and will be in a leg brace for the next month. Her dance teacher was very unhappy upon hearing this news, as Moriah had a dance competition scheduled for the following Saturday. After her appointment, we visited the Humane Society but our kitty (whose name is "Pooh Bear", which is Maryn's nickname; named by Maryn), wasn't there. We drove around the neighborhood again, asked the neighbors, then came home....no kitty. By this time, Maryn was a little beside herself. Earlier that morning she kept saying that the kitty was fine and probably just at the doctor's. By evening, she was worried her kitty would never come home again. Maryn had the beginnings of a cough on Monday; her oncologist said she sounded fine, no pneumonia, but said she could be getting a virus. By Wednesday her cough had really gotten worse and she was more tired than normal. I was increasing her medication, as instructed by the people in Texas, but doing it very slowly because it has a tendency to make her feel nauseated.

By Wednesday I had learned that Blue Cross Blue Shield of Alabama which carries Maryn's insurance will no longer be covering costs for her Broviac line care which included home nursing visits and supplies. They will also no longer pay for lab tests because she is undergoing "experimental" or "investigational" treatment. I was very upset that they would cut her off just like that, no discussion, nothing. I found out through the home health agency. BCBSAL did not call me until about 3 days later. I had a long discussion with their representative about the necessity of care for Maryn's line and labs. I find it very confusing that, in their effort to save a dollar, they would cut off Maryn's care, but if I had placed her on traditional chemotherapy, they would cover the chemotherapy treatments, and all of the line care, supplies, labs, etc. at 100%. I explained that I had never asked the insurance company to pay for Maryn's "investigational" treatment and that if they looked at it from the "bottom line" perspective, I was actually saving them money. I told the representative that the treatments were working, Maryn is fully functional with no symptoms at all. She is able to run and play and be active. I then asked for the name of the person/people responsible for making this decision, the representative then told me this was a "benefit issue" and that I needed to call Customer Service.

I spoke with the clinic in Texas the same day, they told me if she cannot get her labs done every Monday, Wednesday and Friday she will have to come off treatment. How do I, as a parent, decide to let go of what is working for my child? The logic of this insurance company is maddening, and I am angry that they just tossed her aside in the middle of treatment as if she were a piece of trash.

Maryn went her to dad's over the weekend. He has been extremely cooperative and good about keeping her on her treatment the entire time she is there. She had a good time while she was up there. I was thinking this was going to be the start of a good week because bad luck comes in 3's, but this morning we woke up to find our refrigerator had gone out and all of the food in our freezer was completely thawed out, like the warm sun that comes after a snowstorm with water dripping through the slits on each and every shelf. The bottom of the freezer was covered with juice from the frozen blueberries, cherries, and strawberries that I use for the girls' smoothies in the morning. The food in the fridge was completely warm with the lids on the containers of certain items swollen from the warm air inside the fridge. I was completely devastated as I had just gone grocery shopping on Friday. It took me awhile to throw everything away; I spent $600 on groceries and organic food for Maryn. Shopping and Whole Foods Market is not a cheap endeavor. I still get sick to my stomach when I think about everything I had to throw away. On the upside, Maryn was excited to have nothing but macaroni and cheese for lunch and pizza for dinner.

Later in the evening, my favorite neighbor came over and discussed with me the importance of letting him know when I need something, no matter what time day or night. :) He then wheeled a spare fridge he had in his garage into mine. We had some friends come to visit tonight, so the fridge now holds two containers of strawberries and some Almond Milk.

As crazy as my life has been over the past year and for as much stress as I have had to deal with, I am still happy on the inside and really grateful for my life. I love my kids and the life that we have created together; I love that when I look in my backyard, I see Maryn's playhouse and next to it, Moriah's winter scarf and a jump rope, matted in the dirt. I love the wooden wagon the girls' dismantled which is scattered around the yard. I love the garden that I don't have time to care for and grows nothing but weeds, because at the very corner of the garden is a statue of a small angel (a gift from a friend) which always reminds me of Maryn and makes me smile. I love the trees that shows signs of serious attention by my girls (tree climbing) with branches which should be looking skyward instead bend down toward the Earth, and the one huge branch which lays where the trampoline used to be until they moved it. I love the memories we've made in this house; I love my friends, my daughter's friends and all of the people, whom I believe are really angels in disguise, who have walked in and out of our lives at different times when we have needed help with one thing or another, and I am grateful for my friends who stick by my side, no matter what, whether it's my situation, my girls or me that needs care and support.

I have gotten used to drifting through this period in my life. I feel like I am stuck in a boat with no oars, no motor and no waves, with no way to get to shore; a "no man's land", if you will. It used to drive me crazy, wanting Maryn to get better, to get back to our old life, to finish school, so I could graduate this May, to be moving forward. Sometimes I still grieve the loss of the way our life used to be and I know that it will never be the same; none of us will ever be the same again. We are all changed from this experience. I don't know if this has brought us closer together, or if we would have been this close anyway, but I do know that my older girls, Olivia and Moriah, have been absolutely amazing throughout all of this. I think they have learned at a very young age, the true meaning of family; what it really means to stick it out through thick and thin, to really know that love is unconditional ("agape" love) and a selfless giving and serving of one another. I am so grateful to have such amazing kids. We went last week to have our hands molded together in a sculpture. It would have been cheaper to do just me and Maryn but Olivia and Moriah have been such an amazing part of this journey, and I felt that all of our hands belonged in that goopy soup of plaster, together. Because that's been our life over the past few years, one giant mess of sticky soup and we've all been in this together.

March MRI Results

2010-03-20T13:29:00.004-06:00

Maryn had her repeat MRI today. The outer tumor has remained the same, no increase, no shrinkage but the interior has shrunk by half. Praise God! I believe the Burzynski treatment is working. I also believe changes in her diet and supplements are working. I will continue with all of it. She is already a miracle. I am praying for complete healing.

Sick

2010-03-15T20:47:00.004-06:00

Maryn caught a cold last week, then started to get better. She has been complaining of pain on the left side of her foread (which is weird because that's not where her tumor is). Last night she threw up 4 times and she slept for most of the day today, spending maybe 3 hours of her time awake. I am hoping that she still just has a virus and that is has nothing to do with her tumor. I wonder if maybe it could be steroids, she threw them up a couple of times over the past week. I was also told it would be ok to decrease her dose by half, but that hasn't been going so well. I spoke with the Burzynski Clinic this morning; for now, she is off her medicine. We are waiting for her lab results; however, when the nurse came today she couldn't draw any blood from Maryn's line. She ordered something called CathFlo from the agency and then came back later tonight after it was delivered. She was able to draw her blood finally. She changed Maryn's bandage and left our house around 9pm. She is a wonderful nurse; Maryn absolutely loves her and is very cooperative for her.

I laid next to Maryn while slept for most of the day. It's weird to feel helpless with your own child, not knowing what's wrong, and knowing there are things that can't be fixed. I wish I could see inside of her and just fix what isn't working right. It's odd but the helplessness that I always feel doesn't bother me like it used to. It's a feeling that's been with me for 9 months now. My daily life has been a roller coaster of emotions; I've been angry, in denial, fed up, helpless, fighting, surrendered, numb and every other feeling imaginable. I've tried every treatment I can think of that provides the least amount of side effects, the only one I haven't explored fully is light therapy. I believe there is something to it, but I am not familiar with the uses of light. I know they can be healing or harmful. I know sunlight causes our bodies to create vitamin D but can also cause cancer. Over the past 9 months, everything I have researched leads me to believe light treatment is a possibility. I am currently looking for someone experienced in light therapy, not easy to find. In the meantime, I will continue my own research.

Out of necessity, I had to restrict comments on my blog. I believe someone is trying to infect my blog with a virus. Please continue to pray for Maryn and to pray for me. Pray that I may find a treatment that works. I know that I am just a mother, but I believe it allows to think outside of the box regarding medical treatments for this disease. I am willing to try almost anything to save Maryn, and wouldn't it be awesome if it could save other kids too?

I read a story tonight about a doctor treating dogs with brain tumors and he is having success. I believe someday an alternative treatment will be the answer, I don't believe chemotherapy is the cure for DIPG. I could write a book on everything I have learned and I could continue writing, but I lost an hour thanks to DST so I need to wrap things up for tonight.

MRI Results

2010-03-08T21:18:00.002-07:00

Maryn had her MRI today. They gave her Precedex (sp?) which didn't work. She woke up twice during the MRI. She was given her maximum dose, so they couldn't give her anymore. When I returned to medical imaging to see if she was done, she was sitting up on the table crying for me. I could see she was halfway between being asleep and awake. The nurses have never allowed me in the room where the MRI machine is located before, because the magnet is too strong and parents have passed out in there. Because we had the same problem in January, they let me go in and get her today. I removed my belt and my shoes before I went in, and was really grateful I didn't pass out. I could feel the pull of the magnet, it can make a person dizzy if they're not used to it. I hugged Maryn while she was on the table, when it was clear she wasn't going back to sleep and wouldn't lay down willingly, they let me take her out. As soon as I sat down in the chair with her in my arms, she fell asleep. She slept for about an hour before we had to start waking her up. We had to use a cold washcloth, because she was so out of it. She hated it but it woke her up. She ate a popsicle and then we were able to leave.

We went to see the oncologist, who said we needed to have another scan because there wasn't enough information to make a good evaluation. However, he did say that, based on the few scans they did receive, it appeared Maryn's outer tumor did not decrease in size but also did not appear to have significant increase (the radiologist told us earlier that it was maybe 3%), so he said it was "stable". I was thrilled. We return on March 19th to get another scan, only this time she will be under general anesthesia, not a sedative. This will give her oncologist more information as to what the smaller tumor looks like and whether or not its progressing in size. He said the smaller tumor won't become a problem until it becomes as big or bigger than the outer tumor.

Something is working. We are at the 9 month mark for her prognosis. Her doctor said she is doing "extremely well." I don't know if it's the Burzynski treatment, the supplements, water, her diet, laser therapy or chiropractic treatments. I don't really care which is working, but my instinct tells me that it is a synergistic combination of all these treatments that has enabled her to be symptom free. She is truly a miracle in my eyes. I don't know if any of this will save her, but it has certainly given her a much better quality of life than she otherwise would have had, and that is enough for me to continue with everything that we are doing.

I asked her doctor about a new treatment called the Reovirus. He researched it for me and said there is no way to get it approved for compassionate use. This really bothers me. Would it really be that inconvenient for a pharmaceutical company to allow use of a medication, currently in a clinical trial, to those children who are terminal? What have we got to lose, we're already playing against the odds.

For the first time in months, my heart has felt truly happy and I feel a real sense of hope. However, I will continue searching for a miracle. Thank you to everyone who prays for her. I believe God hears your prays and I am hoping He will allow her to stay here with me for a lifetime.

A Great Week

2010-03-07T21:07:00.006-07:00

Starting last Wednesday Maryn has been more active, friendly and happy than I have ever seen her. For the first time since starting preschool, she was actually talking to the other kids, was playful with them and showed a real interest in being around other kids. She also stayed for the first time without me for about 20 minutes, so I could pick up Moriah who was sick, from school.

Thursday we went to the zoo. She rarely sat in the stroller and spent most of the morning running from one place to the next and playing with Kyler, the little boy who went with us. They were so cute together. She ran while he chased her, and they walked together. She was like a miracle walking; magical, in all her splendor. My friend, Alyssa, started to cry watching her. Seeing the miracle that Maryn is already and finding it hard to believe that she is sick. She is such a beautiful little girl, such a beautiful soul. It's a weird feeling, watching your child, who looks so perfect and yet knowing what the future will hold. I can't think of a word to accurately describe it; beauty and sorrow, I guess. I never understood what people meant when they would use the phrase "dying of a broken heart", but now I know this feeling all too well. To be living, yet dying, I feel my heart shatter into a million pieces over her several times everyday; it sometimes feels as if the pain would be too much for one heart to bear and the soul would just give up and surrender. Yet, at the same time, feeling such joy and happiness to have her in my life, to feel her love, her hugs and kisses. To hear her say, "are you going to miss me when I go to my dad's? Then why don't you just kiss me." To hear the words, "mom, I love you", come from out of nowhere, while we're eating lunch or she is taking her mountain of pills; extreme joy and devastating heartbreak, all in the same moment.

While at the zoo, she took my camera and began taking photographs of the animals; she took some really great pictures, one of which was the new baby giraffe. She is much better at taking pictures than I am. Friday it snowed, so we went outside an made a snowman, he was seriously leaning to one side; I knew he wouldn't last long, but we got him upright. When we finished, he already had leaves stuck in the spot where the eyes would go, so we gave him a twig for a mouth, carrot for a nose, took a red ribbon from the porch (yes, I still have my Christmas decorations up ;) ) and placed it around his neck. We then gave him my Tweeyt Bird ski hat; he looked pretty awesome. Maryn was very proud. He was a very leafy, handsome, spring snowman.

Maryn went to her dad's this weekend. I am sure she had a great time. Tomorrow morning we have to be to the hospital by 6:30 am. She has another MRI. Please pray that things will go smoothly and that we will have amazing results, lots of shrinkage and a miracle in the making. Our Lord is the Great Physician and I pray that He will heal her and grant me the gift of a beautiful life with her. A mother should never have a child leave this life before her.

Another Line Break

2010-03-01T22:09:00.002-07:00

As I was disconnecting Maryn from her medicine today and flushing her line, I heard a large popping sound. I lifted up her shirt and there was saline solution all over her stomach. I couldn't see from where it was leaking, so I pushed some more fluid through the line. It spurted out near the clamp, like a hole in a garden hose. There was no blood, so I was grateful. I left the room to get Maryn a new shirt and when I returned there was blood all over her stomach and the bed. I started to panic. My first instinct was to call 911, but then I remembered Texas and how that didn't go so well. I tried to gather some logic and think about what I needed to do. I loosened her clamp and moved it up the line then clamped it again, the bleeding stopped. I called her doctor and within minutes we were headed up to the hospital.

To my amazement, they were expecting us. We were taken back to a room, they had a replacement line and the nurses came in and made the repair. We were in and out within about 2 hours. The only downside was that Maryn had to have an i.v. placed in her hand so they could draw blood for testing. I am completely grateful to be home in familiar surroundings with a wonderful doctor who cares for my daughter.

Around 8 o'clock, Maryn and Moriah were playing before bed. Maryn laid down on her back, giggling, pretending to an animal of some sort, and immediately started throwing up. I cleaned her up, threw all our bedding in the wash and all the feelings of anxiousness and worry washed over me. I have been noticing minor symptoms here and there lately. She had her checkup on the 22nd of February and the doctor said she looks great, but as her mom, I see things. Tonight as I laid down to put her to sleep, she said to hold her, that she didn't feel "right". This was the second time I've heard this in the past week.

I've read stories of kids who go to bed normal and wake up the very next day, totally changed. My heart breaks because I don't want to think about these things. We've been so blessed to have the time we have had with her; to have moments where we have forgotten she was sick, nights where we've just been silly and laughed until we cried, nights when she and the girls taped glow-in-the-dark sticks to the fan in my bedroom and we watched it spin for several nights after, as if there were stars in the sky in my room.

Right now, more than anything, I am begging the Lord that if it is His will to take care her, that he let her not suffer, not for one minute, or one second. We've been holding on to hope and dreams for summer to come so we can pitch the tent in our backyard and pretend we are camping, visit the beach again, and go swimming at Cowabunga Bay. We've been in this fight for so long, that I don't know any other life anymore. I've lost myself completely in this battle. Where would I go from here? I look in the mirror and I don't know who I am anymore, except an exhausted caregiver. My days spin so quickly from one to the next, getting up every hour during the night, preparing her medication everyday, thirsty for water and needing to go potty 20 times a day at least, supplements and more supplements, preschool, dance. I wake up some mornings so tired from the night before that I don't even realize what clothes I've thrown on or what I look like until I'm out somewhere. The reflection in the mirror shocks me sometimes and that's when I wonder who I really am, or where I've gone....surviving, that's all I do right now, get from one day to the next.

Maryn and I have talked alot about Jesus because Easter is coming; some of us have given up things we love for forty days, to remind us of the gift we were given through Christ, to help us become masters over our desires and to give to others in need from that which we have given up. She asked me to tell her who Jesus really was, is he really going to be here for Easter? I told her no, he would be in spirit but that he is still in heaven. She wanted to know what happened to him. I explained that Jesus was a really nice guy who had alot of people be really mean to him, and his body couldn't take it so he went to heaven. She thought about that for a minute, then said, "I feel like I am going to hug Jesus when I see him." I almost started to cry. I hate realizing that my daughter is too perfect for this life, there is no guile or deceit in her heart. She is pure. If I was Him, I would want her back to. Still I wish she was less perfect and had more lessons to learn, so she could stay and we could do life together.

Despite all of the symptoms I see, I am still holding out for a miracle. What do they call it in football, a "Hail Mary", I think. That's what I'm hoping for, even if it comes down to the last few seconds of the game. Give me a miracle Lord, I will be listening and waiting.

.

Our Song

2010-01-23T17:36:00.010-07:00

It's been a long time since I've written anything. I have alot to catch up on, but I've been so exhausted lately that even writing seemed like too much effort. Anyway, I felt like writing today. I drove up to give Maryn her new bags of medicine at her dad's today. I have not been feeling well and an hour's drive seemed too far, but because I love her and want her to be happy, I make the drive so she can be with her dad.

Listening to the radio on the way home, I heard a song that I've listened to a thousand times before, only today I actually heard the words that struck my heart. By time I pulled onto my street I was bawling. With each passing day I am trying to find peace in knowing that she may go, and that she will be in a better place. I know that God has numbered all of our days and that no matter what I do, if it's His will, she will go and if it isn't she will be here with me for as long as it is He allows. Still some days are more difficult for me than others. These are the words to the song, appropriately titled

"Heaven is the Face of My Little Girl."

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”

God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...

Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams

And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.

But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.

Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.

Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.

Maryn's Miracle - vote for us to win $10,000 to help pay for Maryn's treatments - Enter Every Day!

2010-01-04T19:49:00.014-07:00

We need everyones
SUPPORT
We have an amazing chance to win $10,000
to go towards the cost of treatments for Maryn.
Treatment medication costs around $7,600 monthly
in addition there are supplement and raw foods to purchase.

Annette, her friends and family have gone to
'extraordinary measures'
to save Maryn's life.

The contest is for the new movie debuting in theaters
January 22, 2010
'Extraordinary Measures'
please go to this site and vote daily
www.extraordinarymeasuresthemovie.com/#/quilt
Look for the butterflies with the name 'Maryn's Miracle'
read about the movie below.....

A BIG ~ "Thank you!"
for the sincere help of Seven Still Waters www.SevenStillWaters.org stepping up to the plate to help with issues of funneling donations raised so that Maryn receives 100%! Her friends and family love you!

Seven Still Waters
believes that the most valuable asset in this world is the life of a child. Accordingly we have a hallowed responsibility to protect, nurture, and cultivate a safe haven for every child, regardless of color creed or culture. We will overcome hostile environments when each child finds a refuge from the affects of violence, natural disasters and other life threatening struggles.

Extraordinary Measures - in theaters January 22, 2010
“Extraordinary Measures” is inspired by the true story of John Crowley, a man who defied conventional wisdom and great odds, and risked his family’s future to pursue a cure for his children’s life threatening disease. From his working class roots, John Crowley has finally begun to taste success in corporate America. Supported by his beautiful wife Aileen (Keri Russell) and their three children, John is on the fast track. But just as his career is taking off, Crowley walks away from it all when his two youngest children, Megan and Patrick, are diagnosed with a fatal disease. With Aileen by his side, harnessing all of his skill and determination, Crowley teams up with a brilliant, but unappreciated and unconventional scientist, Dr. Robert Stonehill. Together they form a bio-tech company focused on developing a life-saving drug. One driven to prove himself and his theories, the other by a chance to save his children, this unlikely alliance eventually develops into mutual respect as they battle the medical and business establishments in a fight against the system – and time."

Extraordinary Measures

2009-12-23T19:27:00.005-07:00

There is a new movie coming out in January about a parent who desperately tries to find a cure for their child. I can relate to this.

www.extraordinarymeasuresthemovie.com

Christmas

2009-12-22T08:52:00.002-07:00

I found a place to stay up north. Thanks to Brittney, a friend of a friend. It's a beautiful story as to how this came about, but it will have to wait for another day. Because the kids are going to their dads for Christmas, we are celebrating Christmas here tomorrow morning. Santa is coming and his elf has alot to do.......now where are those tights? :) Gotta run. Merry Christmas everyone!

Doing Well

2009-12-20T21:24:00.005-07:00

I'm sorry I haven't been posting updates lately. My computer died while in Texas. I am borrowing my daughter's computer for the time being, whenever it's free.

Maryn is doing really well. We've had a few bumps in the road but nothing major, i.e., a lab test that indicated her platelets were at life threatening low levels turned out to be in error. I am increasing her medication dosages very slowly, as I do not want another repeat of what happened in Texas. As long as I take it slow, she seems to do great. She is not having any symptoms at all and if you saw her, you wouldn't believe she is sick. She looks totally normal and healthy.

We have somewhat migrated off the raw foods diet. When she ended up in the hospital, there was nothing more I could do. I was sickened to see what kind of junk hospitals, that are supposed to be places of healing, feed their patients. Anyway, we are back home now, so she is eating better. We are still a dairy free, sugar free, organic household, only now we are also doing some grass fed meat, organic free range chicken, wild salmon and organic, high omega 3 eggs, a couple of times per week. I think the raw food diet has alot of great benefits, but over the past 6 months, Maryn has not gained 1 inch or 1 pound. I'm concerned that maybe a lack of protein is the reason why she is not growing. She is still drinking spinach, carrots, blueberries and raspberries, etc., in the form of either a smoothie or just juice. I noticed that her wellness and behavior is negatively affected on the days that we have missed giving her these fruits and vegetables. I sometimes wonder if it's all in my head, but I am convinced that better nutrition has a large influence on how well she is doing. She is still taking her supplements, probably 15 pills per day. I am so grateful that she learned how to swallow pills a few months ago. This is a miracle on its own, I don't know any 4 year olds who can swallow pills. In fact, I know some adults who can't. She is a truly amazing little girl. This has definitely made life easier. She is still on steroids but in very small amounts, I decreased her medication by 1 dose per day. Her oncologist thought this would be okay. She receives 1 pill divided in half twice per day. We are at the sixth month mark as of December 17th. The doctor said we had 9 to 12 months total. I still feel like I am in race against time, but have found some peace in knowing that I am doing all I can to save her. I have done some research on the Burzynski treatment and have concluded that I need to resume treatments with the chiropractor, detox footbaths and laser therapy. I believe that this combination of treatment is going to be what saves her. I know of a parent who actually purchased the machines to provide these treatments at home; her daughter is a 4 year (and counting) DIPG survivor, who is doing extremely well. This would provide consistency and ensure that treatments are not interrupted due to holidays or any other reason that the office might be closed and would permit treatments to continue throughout weekends. It would definitely be more convenient, and it is something I would like to do but I need to come up with another fundraiser first.

So this week is Christmas and the kids are scheduled to be with their dad the first half of Christmas vacation. I am hesitant to send Maryn with her dad because she requires ALOT of maintenance and could very easily end up sick or back in the hospital. I have spent alot of time thinking about a possible solution over the past week. I really want Maryn to be able to spend Christmas with her sisters and her dad. I want her to experience the excitement of Christmas morning with the kids. It wouldn't be the same if she was home with just me. I have decided that if her dad is willing to commit to provide the care she needs, which include, making her available every day so I can administer her medication, every other day for nursing services to draw her blood and change her bandage when necessary, making sure she gets her medication and supplements daily, sleeping in the same bed, so she can be monitored and getting up several times throughout the night, as well as providing her with only healthy food to eat (no mac n cheese, chicken nuggets, pizza, soda pop, etc.), then I would be willing to let her go. I would also need to be allowed to come and go from his house as necessary for any unforeseen events, and so that I can check her physical condition. I am trying to find a place to stay up in the Kaysville area, so that I am close. I will need to prepare and provide the new medication daily and I would like to be close in case something happens and I need to get to her quickly.

It is very difficult to balance everything right now. I want her to be happy and to have happy memories and experiences, yet I need to do everything possible to save her. I will do anything to achieve both of these ends for her; hopefully, I will find a place to stay that is close to her.

It is so good to be home with Olivia and Moriah. It has been a busy week. It seems as though we got off the plane and within a couple of days we were busy with Christmas concerts. Olivia had a voice concert at the Salt Lake City Library, it was so nice that her dad could come. Moriah had a Christmas concert at school and a piano recital that same week, unfortunately her dad could not come. After all of this was over, I began to feel like I was getting sick. I'm sure it was just from running myself ragged for 3 weeks and then jumping right back into being a full time single parent as soon as we got home. I haven't been the most pleasant person to be around lately, with Christmas around the corner, not having any shopping done and feeling stress to meet some deadlines. It would be nice if I had another pair of hands around the house, but Olivia and Moriah are a great help to me. I hate to ask so much of them sometimes because they are just kids, but they are really great about helping me when I need it.

All in all, I must say that I am definitely grateful for the life I have, that I get to live it with my children on a daily basis and most of all, I am grateful that Maryn and I are "still in the game" so to speak, we are still fighting this monster of a tumor and she is physically, mentally and emotionally doing very well. I am grateful to God who watches over me and my family by covering us with many beautiful friends and relationships. People who genuinely have a heart and care for us and our well being. It feels as if we are being held up from all side and I am so thankful because I know I could not do this alone.

Lucky me, I get to sleep in the middle tonight between Maryn and Moriah. Let the games begin! Good night. :)

Tuesday Homecoming

2009-12-04T20:13:00.003-07:00

Unfortunately, we will not be coming home tomorrow. We have made arrangements to come home on Tuesday. The hospital said that Maryn needs to remain here for the next 7 to 10 days, and it snowed here in Houston, so airline flights are being delayed and canceled.

I told the doctors that Maryn needs to be home with her family. I explained that we can finish the antibiotic treatments at home. She has a line and a pump to administer medicine, and her oncologist is willing to take over her care. I told them he is willing to sign whatever paper is necessary to get her back to Utah.

Maryn needs to be with her sisters and we need to have our family back together for the holidays. My girls are struggling with me being gone, and I am missing them very much.

Maryn is still not showing any symptoms of having a blood infection. We walked all over the hospital today. She got her hair cut and styled at the free salon upstairs, tomorrow she is going to spend time in the library and the craft room. This hospital does have some cool amenities to pass the time.

Hoping all goes well so we can come home on Tuesday as planned.

Coming Home

2009-12-04T07:48:00.002-07:00

We are supposed to fly home tomorrow, Saturday but we are still in the hospital. I pray that they will release us today and that the clinic can work with me from home. I am so ready to come home. I miss my daughters, my friends, my bed and even the naughty kitten I bought Maryn for her birthday.

Thursday (Dec. 3, 2009)

2009-12-03T21:08:00.009-07:00

I went to bed exhausted at 8:30pm Wednesday night, by midnight James was knocking on my bedroom door. He said the hospital was trying to reach me. I called the hospital, Maryn's blood cultures showed she had an infection and she needed treatment right away. I got Maryn dressed and by 1 am, we were in the emergency room again. I was informed she would admitted overnight but she needed a round of antibiotics to be administered in the emergency room first. We were moved to an inpatient room around 4:30 am. I was never so happy as I was at that moment to see a couch with a fold out bed. James went back to the hotel to sleep and gather some our belongings and would return later in the morning. Maryn was scared because of the new environment and wanted to go "home". I held her in my arms and we slept in the twin size hospital bed. I was so tired I could have slept anywhere at that point.

I spent the morning talking with the doctor at the clinic, discussing when and how to proceed with ntraining and the possibility of making our scheduled flight home on Saturday. While I was trying to work out the details of what was going to happen over the next few days, I received a call from my ex-husband.

He inquired whether Maryn had been treated recently at a hospital in Houston and whether she was taken by ambulance. I notified him of this last night when I called to tell him we were on the way to the hospital, so I knew he already knew this, but I said yes. He told me that he is receiving phone calls from Midland Billing or someplace about collecting payment on an emergency room visit. My first thought was that the hospital who neglected to treat Maryn must know that they are in the wrong; otherwise, why try to collect payment within 48 hours? I said to tell them that a complaint is being filed with the insurance company and to cease and desist all calls to him. They did not provide treatment so they will not be receiving payment. I said that the ambulance company is the only one deserving of payment because they did provide a service and attempted to take Maryn's blood pressure and temperature.

He then said that he has received and paid alot of bills for her treatment and that we need to sit down by the end of the year and discuss how much I would need to pay him back. I couldn't believe I was having to deal with this now. I stated that it was interesting because over the past 3 years, I had paid all of the medical bills and co-pays for the kids, only asking for 1/2 payment once when I couldn't afford it. So if we need to "discuss payments" then we need to go back over the past 3 years and discuss everything, up to and including every aspect of Maryn's care from nutrition therapy to supplements to laser therapy, and treatment at the Burzynski Clinic.

He then said he doesn't mind paying a couple hundred dollars worth of bills, but if it's a couple of thousand dollars he can't pay it. I then asked him what happened to the $80,000 he received from his automobile accident and that the court allowed him to keep after our divorce. He said, "it's my money, not yours, and I will never tell you what I did with it."

He then said, "I see where your mind's at with this." I want you to know that I'm not going to file with the ORS even though I've had the kids for 3 weeks because I know you can't afford it." The Office of Recovery Services is a state funded collection agency in Utah that handles receipt and disbursement of child support payments. The law is that the child support follows the child, so if he files that he has had the children for the past 3 weeks, I will end up owing him approximately $1,800, because I took Maryn to Texas to receive cancer treatment.

I reminded him that he approached me and said he wanted to watch Olivia and Moriah while we were gone, and that he wouldn't file with the ORS. Now it seems he believes he is doing me a favor by not filing. I told him that if I had known he intended to create additional problems for me by filing with the ORS, I would have the girls stay with friends or family. He said that I couldn't do that because he has the "right of first refusal on childcare". I reminded him that he, in fact, does not have right of first refusal.

I then explained that how completely unbelievable it is, that we are having this conversation right now with Maryn in the hospital. I am up to my eyeballs in caring for her full time and I can't believe we are even having this conversation.

I then told him my phone is ringing, I will have to talk to him later. Fifteen minutes later I received a collection call from a hospital in Utah, saying that I am the guarantor on a bill and I need to pay. I told them I simply cannot afford to pay and they need to call my ex-husband. They said "it's against policy and they cannot do that." I said, "well if policy is more important than getting your money, then send me to collections, I will be filing bankruptcy when this is through." I told her, "I have no assets, I don't own a home, so there is no way you will be able to get your money from me." She said she is giving me 10 days to pay or I'm going to collections.

I just do not have time to deal with this kind of stuff right now. I wondered what is must be like to make somewhere in the neighborhood of $250,000 per year, be able to live a comfortable, completely normal life and sit back and enjoy it, while other people trying desperately to save the life of a beautiful and priceless little girl. I know I'm sinking financially but I cannot deal with the additional stress of bill collectors and reconciling who owes what right now. It hurts me to think that Maryn is just a dollar sign and a number to so many people throughout all of this. Though some may disagree with me, I believe I have my priorities straight. When I die I can't take anything I have on this earth with me, including money. All I get to have in heaven are my memories and my relationships with others. I want my daughter to know that I valued her life above all monetary and selfish desires. I have truly given all of my heart, soul, time and money for her because I love her. I believe there is nothing greater than love.

Maryn is laying in her bed complaining that her stomach hurts and I'm having to deal with the additional stress of being preoccupied with stuff that shouldn't matter while I'm taking care of her. I have decided that all future calls will go straight to voicemail because I simply cannot deal with any of this right now.

In speaking with the clinic, the doctor asked if someone could watch Maryn while I come in and finish up training today so we can leave as scheduled on Saturday. James stayed with Maryn and I left. While walking to my car, I had a feeling I should stay. I got in the car and drove to the clinic, as I pulled into a parking spot, James called and said Maryn's nose was bleeding and she was crying for me. I told him I was coming right back. I put the car in reverse and returned to the hospital, determined that I would not leave her again for any reason. The clinic training will have to wait, my daughter needs me first and she goes where I go or vice versa.

Maryn complained of stomach aches throughout the afternoon. She had been constipated from being sick over the weekend. I asked the doctor if they could give her something to get things moving. They did and it worked. She took a nap and later woke up complaining of a stomach ache again. She threw up. James got the doctor who was right outside in the hallway. She came in, assessed Maryn, asked me several questions then ordered some medication for vomiting. I was worried, was this from the infection, tumor swelling or some other thing? I wondered if I had stuck my hand into a hornet's nest (tumor) by bringing her to the Burzynski Clinic. I again, questioned myself, wondering if she will continue to have problems from here on out. What have I done? Should I have waited to start treatment? These questions nag me everyday.

By evening she was feeling somewhat better. "Smiley Face" from "Lollipop Land" (hospital volunteer) came into the room and brought Maryn some paper fish, glue, glitter and a popsicle stick. She told us about the 16th floor and all its offerings, radio station, lounge, library, hair salon, etc. After she finished decorating her fish, she said she needed more, so we took the elevator up to the 16th floor. We gathered up some more paper fish, lots of different colors of glitter and some glue. We walked around and checked out the hours of operation for the hair salon. It's free and walk ins are accepted. We will be there early in the morning to get a haircut and style, she is excited.

She didn't eat lunch or dinner and she is sleeping now. I am hoping tomorrow will be a good news day. I am hoping we will have good results from the bacteria cultures

Wednesday (Dec. 2, 2009)

2009-12-03T20:56:00.005-07:00

I woke up at 3:30 am in a panic about the car situation. I called the front desk to get the name of a rental car company nearest the hotel as well as a reputable taxi company. I reserved a rental call through Avis for pickup later in the day. I scheduled a taxi pickup for 6:30am so I could pick up Lindsey's car from the pizza restaurant. She was very understanding and kind about letting us keep her car an extra day.
At the hospital, the nurse, who was extremely knowledgeable and skilled with Broviac catheters, initially got a small amount of blood but then the line clogged. I watched in amazement. She was competent and efficient and I was grateful to have her working on my daughter. She explained we would be there most of the day while she administered a medication and let it sit in the line to dissolve whatever might be clogging it. By the end of the day, the line was returning blood and being flushed. She drew blood cultures from both Maryn's arm and her catheter. By 5pm we were free to go.
We picked up the rental, returned Lindsey's car to her and got home around 7:30pm, so excited to get some sleep. I was dragging from only sleeping 3 hours the night before. We went to bed at 8:30pm

Hospital Hell (Tuesday Dec. 1, 2009)

2009-12-01T06:34:00.010-07:00

I logged in Maryn's clinic binder that she went to the potty 7 times last night. That doesn't include the times that she woke up and said she couldn't sleep, needed a drink of water or when the on-call doctor called me. I'm so tired and feel like I haven't slept a wink. I have a kink on the left side of my neck that's been threatening to come for days, it's now here, hurts like crazy and makes it difficult to hold my head on straight.

Maryn began treatment yesterday at a lower dose, 80/8. She is doing better. The medication makes her thirsty so she drinks ALOT of water, which is good, but because of this, there is a risk of her electrolytes becoming imbalanced.

My phone rang at 5 am. It was the on call doctor, telling me Maryn's potassium test came back low. She said she would call in a prescription and that I needed to give it to her as soon as I pick it up. We arrived to the clinic at 9 am, met with Dr. W., who said Maryn needed a potassium infusion. They prepared her bag, hooked her up to the pump and told us to return in 3 hours for retesting.

In my effort, to help Maryn gain back the 3 lbs she lost over the weekend, I told her she could have anything she wanted for lunch. Of course, she chose pizza. We hadn't been at the restaurant for even 5 minutes, when I heard her say "mommy". I turned around from the buffet and saw her sitting at the table with blood gushing out of her catheter all over the booth seat. I panicked. My heart was racing, I felt sick, I couldn't think. I ran over grabbed a napkin and covered the end of the line. I called the doctor, who told me to call 911 and have her taken to the hospital. We arrived at the hospital within minutes. Her line was clamped to prevent bleeding. She was brought into the emergency room by an EMT, who checked her blood pressure and temperature. He couldn't get a read of either of her vital signs because the equipment used was made for adults, not children.

They wheeled her into an examination room where we proceeded to wait. We arrived at 12 noon and walked out at 4:30pm without Maryn being evaluated or treated. The full story is below, which I wrote in detail mostly for my records, so I can write a letter of complaint to the insurance company.

While we waited in the room, one nurse came in to get patient information and look at the line. I explained that Maryn was a cancer patient with a Broviac line connected to her aorta. I expressed my concern about the risk of infection and asked that the end of her line be covered. He did not seem concerned and did not make any effort to cover the catheter. He seemed unconcerned, left the room and never returned.

A short time later, a guy from registration showed up requesting insurance information. I expressed my same concern to him and asked if he could get someone to cover Maryn's line. He said he would let someone know and left the room. Then we waited. Maryn was hungry because she never got to eat, so I went out and asked the nurse if I could give her something to eat. She said no because she might need to be put to sleep for surgery and they don't want her to aspirate food into her lungs. At this point, no one had even checked her vital signs, so I was concerned that she would be having surgery. "Is that the only way to fix this?" I wondered.

I returned to the room and called Maryn's oncologist in Utah. I explained what happened and asked what I should do. He told me that if she were in Utah, he would first draw a blood culture, give her a dose of antibiotics and repair the line. I said, "the line can be repaired?" He told me yes repair kits are made for these types of situations. I took notes so that I could ask the doctor when one comes in. I laid on the bed with Maryn who kept saying she was hungry. I got up, turned off the light and got her to take a nap. She slept for about an hour and a half.
We waited for almost 2 hours before the doctor came in and asked me what was going on. I began to explain the situation and requested that they repair the line instead of surgery, he looked at the line to see if they carried that brand of repair kit, when he was paged, said he would be right back and left the room. We waited for another half an hour, he still hadn't returned, so I went out and asked if he was coming back. The nurse said he was busy calling around for a replacement kit. I could see him sitting behind the desk, discussing another patient with a different nurse. I told the nurse we waited our 2 hours and deserve to be seen next, her line is exposed and we need to get it covered. She said he would be right in. I returned to the room and waited. Maryn was still crying that she was hungry, so I decided to let her eat. She then said she was thirsty, so I went and asked for water. The nurse said she couldn't have anything to eat or drink because she was going into surgery. I told her I already let her eat because we had been waiting so long and no one had come in to tell me what was going on. This nurse was very unhappy and rude and said I couldn't give her anything else. Another nurse, said well she has already eaten so she might as well have a drink and went to fill Maryn's water bottle.

When the doctor returned he informed me that my daughter was not the only patient in the E.R. He told me they do not have a repair kit for her catheter and then said it would be another 30 minutes before the interventional radiologist could come down and talk to us. They may be able to fix her line. He did not offer to cover the line to prevent from infection. I notified him that she has a history of a heart murmur and was at risk for endocarditis. The hospital in Utah gave her antibiotics to prevent infection from this. Still he seemed unconcerned and left the room. We were moved to another room, seen by an interventional radiology PA, who requested to see the broken piece that came off the catheter, after some investigation, she returned and said they do not have the right size to fit the line.

In the meantime, another nurse told me the doctor was still calling the other hospitals in the area to see if they had a kit, but it didn't look promising. That Maryn might have to have surgery to replace the line. By the this time (3:30), I had called my friend Ruth, whose husband sells medical devices, and asked if she could find out if any hospitals in Houston have this type of repair kit. I also called Carin and expressed my unhappiness with the lack of care Maryn was receiving. We discussed the idea of moving Maryn to MD Anderson Cancer Center where she might be more of a priority and they may have experience fixing Broviac lines. She told me to get the end of the line covered now because every minute the end is exposed greatly increases chance of infection. I went out and asked a nurse for a piece of tape and some gauze, returned to the room and covered the line.
The guy from registration came back and I told him I am considering moving Maryn to another hospital. With a slightly rude tone in his voice, he explained that everything Maryn needs to have done can be done at this hospital and insurance won't approve payment at another hospital. He then explained that the doctor may submit an "against medical advice form" to the insurance company. He then told me to sign the electronic consent forms in front of me. I said no I wont sign until I know she can receive proper treatment. After his further coercions I still declined. He then went and notified the doctor who promptly returned with some tape and gauze to cover Maryn's line, which I had already done. He put on an air of caring and taped Maryn's line down to her chest over the end that I had already covered with tape and gauze.

He said he needed to know what I was going to do before he prepares a whole team to to replace Maryn's line. I told him that I wanted to know exactly what they could do for her first and asked whether or not he had found a replacement kit. He told me there were no replacement kits available in the Houston area at any hospital.
After some discussion, he told me that they were not planning on me coming in today (what the hell does that mean, it's an emergency room?!). I told him that's why it's called an emergency. He said to me, "ma'am, this is not an emergency." I said, "oh, it's not? then I will just take her home." He then said well it's urgent and it's something that can be done on an outpatient basis and we can do that here. I told him I was undecided as to what I was going to do. He left the room, I called and spoke with Carin and Ruth. They advised me to take Maryn to another hospital, did I really want them cutting my daughter open after the treatment (or lack of it) she has received. That was my initial concern for calling them, I agreed. Now I just needed a ride back to my car. I remembered I had met a woman the day before who gave me her number and offered her help. I called Kelly. She came to the hospital and waited until we were ready to leave.

At 4:30, I scooped up Maryn, walked past the nurses station and said we were leaving. She didn't acknowledge my comment, so I assumed it didn't matter. As we reached the exit, the crabby nurse from earlier came running out with a thermometer in her hand yelling, "ma'am before you go, can we at least reassess your daughter?" I said, "what reassess? you never assessed her? She said, "are you refusing medical treatment?" I said, "no, we never received medical treatment, we have been here for 4 1/2 hours and no one even took her vital signs." She said she willing to do that now, I refused. She then said she would be filing an "against medical advice" form to the insurance company. I told her to do what she needed to do, that the emergency room was neglectful in its care for my daughter and they would have a lawsuit on their hands. The entire waiting room heard the entire confrontation. I then decided to tell them that my daughter is a cancer patient who never received treatment from the hospital. As I headed toward the exit a security guard was behind me. For a split second, I was afraid that they might try to take my daughter from me. I was grateful Kelly showed up to take us to our car. It was pouring rain and cold.

We waited at our car for Carin's friend Karen to arrive and take us to Texas Children's Hospital. By this time my friend James had arrived in from the airport as we had scheduled the week before. Erica arranged a rental car for him and directions to where he needed to go, since I was supposed to pick him up but couldn't. He met us at the hospital.

Within minutes of arriving, Maryn was taken to a room, her vital signs were taken. We were moved to a treatment room where 2 nurses showed up, assessed her situation, grabbed a kit and began repairing her line. I told them that I'm surprised they have a kit because the emergency room at the other hospital said they called all the hospitals in Houston and no one had this type of repair kit. They laughed and said no one called us. The type of line your daughter has is the only one we work with. Right then I was again grateful for friends who are more like family. They helped me through a situation and saved my daughter from a needless surgery.
When the repair was finished the nurse was able to flush the line but could not get a blood return. We were instructed to return in the morning when someone from the vascular access team could troubleshoot her line.

On the way home from the hospital, our rental car blew a tire. We hobbled into the residence inn parking lot and called Enterprise. They said it would cost $61 to have the tire repaired and that we shouldn't drive on the spare for more than 3,000 miles or more than 65 mph. We explained the unfairness of having to pay for a repair for a vehicle we only had for 3 hours, but finally agreed since we needed the car.

We arrived home after midnight and had to wait an hour for AAA to come service the tire. When they arrived, James opened the back of the vehicle to find that no spare tire was provided. The car was now useless, Enterprise was closed and we needed to be on the road by 7 am the next morning. Too tired to care, we went decided to sleep and deal with it tomorrow.

The lesson in this experience is that no two hospitals are alike, don't believe everything the hospital staff tells you, be in charge of your medical decisions and remember, for some hospitals it's only about the money, not the patient. I'm appalled that they would put a 4 year old child through a needless surgery for money. This is certainly not in her best interest.

Sunday

2009-11-29T22:12:00.004-07:00

Maryn slept in this morning, it was nice to not have to leave for the clinic until 8:45 am instead of 7:30 am. She had been complaining that she was hungry since 2 o'clock this morning. I know that hunger is a side effect of Decadron, so I figured it had finally built up in her system. I was glad she was hungry but wanted to make sure she could keep something down first. She ate a couple of crackers and some applesauce over the course of an hour and nothing returned. She had lost two pounds since Friday. She is such a tiny thing that I worry about her weight. I told her she can have anything she wants today. She said she wanted pancakes for breakfast. We got to the doctors and had to wait. Its usually a long time over the weekends. I found the nurse and asked her if I could take Maryn to eat and come back, she said no because Maryn is a priority today and they are seeing her next.

A lady whose daughter is receiving treatment at the clinic, offered to give Maryn an organic bar. Maryn said no, I said thank you. As soon as she handed me the bar, Maryn tried to grab it and throw it. I told her that she didn't need to throw it, saying no was good enough. She raised her voice and said "no! I want to throw it!" She tried to grab it out of my hands, so I hid it behind my back. She became wiggly trying to reach behind me to grab it. Then they called us back. They performed the normal routine of blood pressure, heart rate, etc., and drew her blood to check for potassium and sodium levels. Today I was told that both her potassium and sodium levels are getting low and that supplements would be prescribed. I explained that she hasn't eaten much over the past 3 days and that she is hungry so I am hoping she can keep food down today. The doctor said they would like to resume treatment at a lower dose and asked if Maryn has been drinking lots of fluids. I told her no and asked if we could wait another day so I could try to get food and water into her first. I was worried that if we started treatment now she would end up sick again. I wanted to feed her first.

While in the room Maryn asked me "mommy what are these red dots on me?" I looked at her hand and all the way up her arm she had these tiny microscopic red dots. I showed the doctor, she asked how long they had been there. I told her I didn't know we just discovered them. She explained that it is likely a side effect from the Decadron and they would check them again tomorrow.

We found an IHOP to get Maryn's pancakes. She only ate two of the tiny sized ones and we brought the rest back to our room. She fell asleep and woke up later in the day to remind me she needed pizza.

The nurse showed up to change Maryn's bandage. She told me she understood that I was being trained to do this. I told her I had been shown once. She said that I could do it this time. I said, "oh, that's ok, you can do it. I'll just watch." I ended up doing it. Maryn was crying while I tried as gently as I could to peel the sticky tape back. I don't know why they give instructions to be careful not to get the bandage wet, because it doesn't come off. I tried using Detachol which always worked great on the bandages the nurse took off in Utah. I played with the edges, hoping it would peel back. It didn't. I filled a tiny syringe and tried squirting it between the tape and the skin near the tubing, as the nurse at the clinic had shown me. It worked a little bit. Maryn was crying the whole time, saying that it hurt and that she wanted me to hold her. I told the nurse I'd like to hold her while she changed the bandage. No deal. I took a deep breath, wet a piece of gauze and used it to hold down a piece of her skin while I lifted the tape up around each section. She still cried but there was nothing else I could do.

The nurse then instructed to crack open the little stick with the sponge on the end to let fluid out. I then needed to rub this around the incision where the catheter was placed. Her skin was irritated and red from the bandage. I did it as gently as I could. The nurse said, "you need to really get in there and scrub it." I couldn't do it. Maryn was wiggling and crying, holding her arms out for me and staying "mommy stop!" The nurse said she would hold Maryn while I did it. I again said that I would like to hold Maryn and could she take over. She told me I was doing fine but to really get in there and scrub. I scrubbed as gently as I could. After a minute or two, she realized I couldn't do more than that, she said it was ok to put the bandage on. I laid the Biopatch over the incision site and covered it with that awful sticky tape. I mentioned to her that in Utah they use a bandage that has some kind of material around the edges, it comes off really easy and doesn't irritate her skin. I've asked a few people out here and no one knows what it is. She said she thought it was called Coverderm and she would try to get some for next time.

I laid with Maryn for a few minutes after. I really don't know want to be her nurse, I want to be her mom. I feel as though our relationship is changing slowly over time. She is going to associate with the pain she endures instead of the one who provides her comfort. I hate this.

Her speech is stilled slurred today but she got up and walked around some after eating her pizza. She hasn't thrown up since last night so I'm grateful that is behind us. She still slept most of the day but less today than yesterday and she is more alert. Something is still weird with her eyes. I can't tell if it's from swelling or from the medication or vomiting or a combination of things. I am hoping for further improvements tomorrow.

Saturday

2009-11-29T18:01:00.008-07:00

Today has been the worst of all days. Maryn threw up all night and appears to be getting worse. She is constantly complaining that her stomach hurts and that she is tired but she can't sleep. We got up early and went to WalMart to buy apple juice and saltine crackers. I hoped that this would help settle her stomach. It didn't take longer than a minute for her throw up after taking one bite of cracker or one sip of juice. I gave her the cup to hold in case she needed it for the long drive to the clinic. She threw the cup down and said she didn't want it. She could barely form words to speak and it was difficult for me to understand what she was saying. I laid my sweatshirt across the front of her and told her to leave it there, in case she got sick, she could just throw up on that. She thought that was funny, giggled and said ok. She threw up twice on the way to the clinic.

At the appointment, I explained the situation to Dr. A. She decided to lower the dose on Maryn's treatment but said if she continues to vomit to call her. She said I did the right thing by turning off the medicine last night but next time to call the doctors anytime day or night, no matter how many times, because that's what they're there for. Over the course of her appointment, Maryn threw up 3 times. Dr. A. said Maryn needed another dose of Decadron. Thankfully, they didn't make me do it this time. I was clearly a worn-out mess from being up all night with Maryn. I was exhausted and teary-eyed. She wrote a prescription for oral Decadron. told me to give it to her as soon as I picked it up and gave us directions to the pharmacy. As we left our appointment, she threw up again. I had to turn around and go back inside to get paper towels and empty the cup.

I picked up her prescription and gave her first dose of oral Decadron and got on the highway. As soon as I pulled onto the on ramp, she threw up. I pulled off at the next exit and called the doctor. She asked if Maryn had thrown up the pill, I said I assumed so, because it was not even a minute from the time the pill went in and everything came back out. She told me to turn off the pump and give her another dose as soon as we arrived home. Treatment would be delayed until tomorrow. Maryn threw up a total of 5 times on the way home. I had to pull off to highway several times but it was always too late to really do anything. Her clothes were soaked and she was crying. There was nothing I could but get back in and keep driving.

It took what seemed like forever to get home. I decided that while staying in Humble is nice and feels like home, we need to be closer to the clinic. Maryn cannot endure these drives anymore now that she is so sick. I spoke with the host family and Lindsey arranged for a friend to help me find a place and move everything. I also spoke with Dr. A. and told her Maryn is still vomiting. She called in a prescription for suppostories.

Once we got home I changed Maryn's clothes. I didn't bring enough warm clothes and she had thrown up on the last warm outfit she had. I bundled her up in a blanket, laid her down on the couch and went downstairs to do her laundry. A few minutes later Shelley showed up, which was good because I needed to run and pick up Maryn's prescription. She was asleep upstairs and wouldn't notice I was gone. When I returned Shelley left to run to Walmart to grab Maryn more blankets and warm clothes.

Shelley and Natalie helped me find a place to stay. Shelley helped me pack up everything and came with me to help unload. I couldn't have done it without her help because during all of this packing Maryn was still throwing up. She didn't even have time to tell me she was going to throw up anymore, it came on so fast, she just kept throwing up all over herself and the blankets. Each time I cleaned her up, took blankets down to wash and put her in her new clothes.

Throughout all of this, I was accompanied by the unwanted emotions of pain and guilt. Pain at watching my daughter suffer and guilt from knowing that I am the reason she is sick. It was me that chose to begin treatment. What if I was wrong? What if this treatment doesn't help but only hurts her? The guilt was unimaginable. I looked at her sleeping face; she is so beautiful. She was as weak as a kitten and I was helpless to do anything. I kept second guessing myself. Did I make the right choice to start treatment now? Should I have waited until after the holidays? What if it would have been too late by then? I would then be questioning myself about what if I had started treatment earlier. What if she is never the same after this? Did I just ruin her quality of life from here on out? What have I done? She asked me earlier, "mommy, why do I keep frowing up?" She also told me that her tummy hurts but pointed to her side. I remember what that feels like and explained her tummy is sore from throwing up. I knew she was throwing up from the tumor becoming inflamed. I made the mistake of not starting her on Decadron as the doctors recommended. I thought I was doing what was best for her, but now she is suffering. But I was not alone, my constant companion, guilt, was right here with me, keeping me company.

By evening, we were checking at the Marriott Residence Inn, while it certainly wasn't as comfortable as the home where we were staying, it was close to the clinic and I reminded myself of this importance. Maryn didn't want to be here, said she wanted to go back and I felt horrible for having to move her. She was tired and had fallen asleep on the bed within minutes. She had already gotten one suppository and it was time for another. I so hated doing this to her. The doctor called later in the evening to check on her. Maryn threw up at 7pm. By this time she had received one oral dose of Decadron and 2 suppositories. I was instructed to go ahead and give her another oral dose of Decadron. The vomiting had already decreased and the doctor said she should be feeling better by the next morning.

She was restless and mumbled throughout the night. I was constantly awake, placing my hand on the top of her chest to feel her breaths, turning on the light to examine her closely, pulling her closer to me. Trying to listen when she called my name and mumbled a sentence. She hadn't thrown up for hours now. I tried to sleep.

I woke up in a panic and realized that I had forgotten to pay my bills over the past 2 weeks and am now late on several of them (hooray for late fees and the resultant hiked up interest
rates :( ). I remembered that my student loans had come due, I left the letter at home and I will probably be late on my first payment by the time I return to Utah. I was hoping to at least call and see if they would work with me, since every dime I have goes towards a greater priority right now. I'm sinking financially but I came to grips with this weeks ago and have accepted that bankruptcy is probably in my foreseeable future.

Who would have guessed that I would be in the worst of the worst situations? I went to school, trying to make a better life for myself and my girls. Instead, I now have outstanding student loans and nothing to show for it, no degree, nothing. I was so close, scheduled to graduate this coming May. Oh well, I have learned a great lesson. That no matter how I try to plan my life and no matter how hard I work, it will only be if God wills it, and it wasn't his will that I pursue my education. I should have listened to my inner voice back in January. I got the very strong impression that I needed to drop my classes for the semester. A sense of dread is the best way I can describe it. It nearly dropped me in my tracks as I was walking across campus one day. I thought maybe it was due to my upcoming divorce trial, but I am not a quitter, so onward I went. Maryn was already showing signs of trouble, but I attributed each symptom to another cause, never once imagining it would be the worst of the worst, a brain tumor, inoperable at that.

Day After Thanksgiving

2009-11-28T19:54:00.005-07:00

I woke up in the middle of the night to get Maryn more water, as soon as I sat up I felt the room begin to spin. I laid back down for a second and then sat up again. It was still spinning. I grabbed her cup and went to get some water. I felt really sick. I went downstairs looking to take something to stop the progress. I began to panic, what if I did get sick? Who would take care of Maryn? What would she do if I was too sick to get out of bed? What if she needed something or was in trouble? Who would call the doctor? Who would drive her to the clinic for her daily checkup and medicine change? The feeling of being alone suddenly overwhelmed me with fear and lots of irrational thoughts.

She was in and out of sleep all night, mumbling and restless. I watched the clock on the nightstand for most of the night, waiting for time to pass so I could get her to her appointment, which wouldn't come soon enough. I was still in shock at how quickly her condition had changed from good to bad. I didn't want to believe it had something to do with her tumor, I was hoping that maybe she just had a virus, after all I felt sick. I was hoping for the best, but my heart felt it was something worse.

We had our daily appointment with Dr. R, the on call doctor. She fell asleep in the car on the way to the clinic, but throughout the appointment she appeared alert and normal. Dr. R. ordered to increase the dosage of her medication to 80/12. The nurse prepared the medication and the pump and we left for our temporary home.

She slept for most of the morning, which was very concerning to me. I called the doctor around 2pm and told him she had been asleep since leaving her 9 am appointment. He instructed me to give her .50 cc of Decadron. I was nervous to give this to her. I knew if I gave it too fast it could make her vomit. Over the course of the next 30 minutes, I gave it very slow along with a slow flushing of her line after. Then I waited.

A few hours later, she woke up and said she had to go to the bathroom but before I could get her there, she began vomiting, it appeared to be projecting out of her mouth which I had never seen before. We made it to the bathroom, I got her cleaned up and brought her back into lay on the couch. She went back to sleep. I cleaned up the mess and called the doctor, who told me to give her more Decadron, this time .25 cc

She slept for the next 3 hours, until about 8:30pm. With each passing hour, I got more and more worried. She had not slept this long ever throughout this treatment, or at any time, for that matter. When she woke up, she took one look at me, giggled and said that I had cheese on my face. I was sitting on the couch with her typing, clearly not eating cheese. Though it was a funny comment, it was very concerning to me because, Dr. R. had asked if she had any mental confusion, saying "things that don't make sense." I told him no. She told me that her stomach hurt, I asked if she was going to throw up and she said yes. I ran and grabbed a large cup I had in the bathroom and she threw up in that. When I emptied it out, I noticed her vomit was brown, which was weird because she hadn't eaten anything since 7am that morning and it was oatmeal. I called Dr. R. again and he told me to give .25 cc of Decadron, so I did.

I got her to eat a banana before she fell back to sleep. At her appointment earlier, I was instructed that she needed to eat something with potassium in it because her level was getting on the low side, but still within normal limits. She only ate about half of it before she complained that she was tired and wanted to go sleep. This is all she has eaten all day besides her oatmeal.

It is now 10:00pm and she has thrown up again with the same brown-colored consistency. Her medication is scheduled to begin another dose at 10:30pm. I have already called the doctor several times today. I can tell that she is not getting better with all of the Decadron that I am giving her. I have decided to turn off her medicine and talk to the doctor in the morning; hoping that she will get an uninterrupted night's sleep.

Worried

2009-11-26T15:45:00.003-07:00

I am just sitting here watching Maryn sleep. We were supposed to meet some new friends for Thanksgiving dinner, but Maryn has been sleepy most of the day. When we arrived at the clinic this morning, Maryn fell asleep in my arms waiting for the doctor. Upon entering the room, the doctor found this concerning, asked me some questions and said Maryn needed to be give Decadron. My stomach felt sick. Shortly after the nurse came in, the doctor discussed this her. The nurse told me that I had to give Maryn the Decadron because I needed the practice. For the first time, since being here, I wished I wasn't alone. I felt a sense of panic, worry and regret. Questioning myself constantly about starting treatment; this was my fault. We went into the infusion room, the nurse told me to prepare the medication as I had been instructed earlier in the week. I took out the Decadron emergency kit from Maryn's backpack and stared it, I couldn't think. The nurse kept talking to me while preparing medication for another patient, telling me to remember to give the medication very slowly or Maryn will throw up everywhere, remember to flush the line before and after, remember to fill the needle with air then put it in the bottle and pull back to fill the syringe.

I prepared everything, sat in the chair in front of Maryn, cleaned the tip of her catheter, flushed her line and began to give the medication. I was so nervous my finger slipped and some of it went in too fast. I panicked and pulled back on the syringe. I told the nurse what I had done, she came over to look at the amount Maryn had been given. She said it was ok, just to take it slow. I started to cry, thinking to myself that I'm just not cut out for this. All the stories, I've read about kids on Decadron have not been good. A few minutes later the doctor came in, Maryn was alert and talking. The doctor said, "see this is what Decadron does, it helps them to feel better." I told her I hadn't given Maryn very much, the nurse came over to look and told the doctor Maryn had been given half the dose. The doctor said that was fine and I could stop. I breathed a sigh of relief. We hooked up her regular medication and came home.

But now it is almost 5 o'clock and Maryn has fallen asleep twice today. I woke her up once to put her in the car to meet the new family for dinner. Maryn's head kept flopping around, she tried to wake up but couldn't. I decided we shouldn't go. I brought her back in the house. She woke up for about an hour to eat then fell back asleep. I don't know if she is sleeping because I cut her nap short or because the tumor is swelling. I need to call the doctor but am worried to give her Decadron while here alone. I really wish someone was here with me now.

Thanksgiving

2009-11-26T11:18:00.003-07:00

Today I am grateful for one more day with my youngest daughter, Maryn. I am thankful for the opportunity to have been given the gift of being her mother, of loving her, knowing her and growing with her. She has taught me so much over these past 4 years. Daily I think of, remember and believe the words spoken by Alfred Lord Tennyson.

I hold it true, whate'er befall
I feel it, when I sorrow most
'Tis better to have loved and lost
Than never to have loved at all

In spite of a sadness that overcomes me and a heaviness that I almost cannot bear, I try to start each new day with a grateful heart.

This day, and everyday, I am also thankful for the health of my other 2 beautiful daughters, Olivia and Moriah. Seeing their strength throughout what they have had to endure in their young lives has been an amazing example to me. I am grateful to God everyday for blessing my life with 3 beautiful girls. If I had a chance to do everything over in this life, I would do it all again, just to have them in my life. They make everything worth it.

Over the past 3 years, as I began a new chapter in my life as a single mom, I am thankful to all of friends I have made. Friends who feel more like family, who constantly give their love, time and companionship to me and my daughters, all the while expecting nothing in return. My life is full of an abundance of beautiful relationships, which I would not trade for anything. These are the things that are priceless to me, friends and family.

I only wish I had remembered to ask somebody to water my plants while away. :(

Finally, A Routine

2009-11-24T20:59:00.005-07:00

So things are finally settling down and it appears we now have a routine. We arrive at the clinic around 9 and finish by noon, get some lunch and go home for a nap. I keep hoping she will want to go do something after, but she hasn't expressed the slightest interest in any of my plans. We stayed home and watched cartoons this afternoon, then Maryn said she was tired so I put her to bed.

I spoke with another parent whose child was treated by Dr. Burzynski for a different type of tumor; she is in complete remission. He said that the medication in bag 2, (I think he called it AST2 or something) is known to make patients more tired than usual.

We have had several invitations for Thanksgiving dinner from different people. I feel blessed that so many people care about us and are concerned for where we will spend Thanksgiving. I would like to spend the day with a family that has young children, so Maryn will have an enjoyable time. I will get this figured out tomorrow.

I'm finally all caught up on blogging, sorry for the delay. I've been very tired and worn out at the end of each day last week. Now that things have settled down hopefully I can get my updates in every night.

Thanks for following our story. We love you all. Good night.

A New Week (Monday, November 23, 2009)

2009-11-24T18:31:00.003-07:00

Today was a good day at the clinic. After dealing with some unnecessary drama over the weekend, I was finally able to get my "head in the game" so to speak. As soon as we got to the clinic, I got busy with all of the things I was supposed to do. The nurse trained me on some new things as well. We got alot done today. Maryn gets bored while I'm being trained, so she either watches movies or draws all over the paper I'm using to take notes. She is extremely patient for a 4 year old.

Tonight is Olivia's (my oldest daughter) Christmas concert choir tonight and I won't be there. I have never missed any of my kids' recitals, concerts, plays, etc. It is so hard to be away from Olivia and Moriah, both for me and for Maryn. We miss them very much and just want our family back together.

Sunday (November 22, 2009)

2009-11-24T18:30:00.002-07:00

Maryn has been complaining that her stomach hurts and she feels sick. I asked her to show me where she feels sick and she pointed to her cheek and then her nose and said, "here and here." This made me think she probably feels nauseated, I asked her if she was going to throw up and she said no, but that was tired and wanted to go sleep. It was 6:30pm, but I put her to bed. She has been sleeping more than normal the past couple of days. I don't know if it's the medication or the fact that she wakes up 3 times a night, needing to go to potty.

For 4 months I have been very diligent about watching what Maryn eats. We did a strictly raw food diet for a few months but I felt that wasn't completely the right diet for her because she is growing. I added in a few cooked items but have been diligent about staying away from canned/boxed food, hydrogenated and other bad oils, as well as dairy and meat. I was doing more research today and realized that an oil I had been using (I thought I had read it was good for her) is actually one I am supposed to eliminate from her diet because it promotes inflammation. I am trying to keep inflammation down so she won't need steroids. I felt completely sick to my stomach. I have so much information coming at me all the time that it is hard to keep things straight. I dumped the oil down the drain and threw away the salad dressing I had just made.

I laid next to Maryn in the dark while she slept, wondering if tonight would be the night I would have to use the Decadron. Would I remember what I had been taught? Would I have the presence of mind to think about all that I needed to do and in what order? I laid there in the quiet darkness listening to the hum and click of the pump as it dispensed her nightly dose of medicine. I prayed that this would be the answer to healing her. I am trying very desperately not to live my life in fear anymore, fear of losing her, fear of many things. I know that if the worse comes to be, she will be in a better place. I am trying to let go and be at peace with this. Someone recently told me that fear does not come from God, I am trying to remember this, second by second, hour by hour as I desperately try to save her life.

Airport (Saturday, November 21, 2009)

2009-11-24T18:28:00.005-07:00

Spent the day between the clinic and the airport. I dropped off my mom this morning and the family we are staying with this afternoon. It's just me and Maryn this week. It's a good thing we like each other. :)

Treatment Begins

2009-11-24T18:27:00.005-07:00

We officially started treatment last evening. I was given a quick orientation with the infusion pump that would administer Maryn's medication. The nurse hooked up her catheter to the medication and handed her the little black bag that contained her medicine, the pump and an emergency kit. I was taught how to give Maryn Decadron, a steroid used to reduce inflammation of the tumor, should she have symptoms while away from the clinic. I practiced on a little doll that had several catheters taped to her.

We were listening to the radio in the car on the drive back from the clinic. I turned down the radio after realizing that the beeping sound I had been listening to, but hadn't recognized, for the past 20 minutes was her pump. Thankfully we were almost there, as soon as I parked the car, I got out and climbed into the backseat. The pump said "occlusion". I had no idea what that meant in pump terms but I tried to straighten out all kinks that may have been in her line. It still kept beeping. I brought her into the house and called the clinic. The doctor that returned my call said he would need to speak with the nurse.

After an hour, I still hadn't heard anything, so I called the clinic again. The doctor told me to unhook her from the pump and we would try again tomorrow. He said something about air in the line, which caused me to panic slightly. I immediately turned off the machine and unhooked her catheter from the medicine. She was so excited to be unattached, she squealed and asked if she could go play. I decided that the next day I needed to find her a small backpack in which to carry the pump, medicine bags and emergency kit, so she could be completely mobile and free to run and play.

Today I received more training and was told that I will basically be Maryn's nurse while she is on this treatment. I must know how to change her bandage with sterile methods, draw her blood and take it to a lab, and how to spike and change bags, among other things. My brain feels like it did when I started taking math classes after 20 years, disoriented, lopsided and confused.

Maryn complained of a tummy ache tonight, but nothing ever came of it, so I'm not sure if it's the medicine or from being tired. I will keep a close eye on her.

MRI

2009-11-19T07:54:00.005-07:00

Maryn has her MRI this morning and treatment begins this afternoon. I am glad she will finally begin treatment but nervous, for many reasons. I couldn't sleep last night for worrying. Have to go now. More updates this afternoon.

We arrived today at the medical imaging center for Maryn's MRI. She was starving from not having eaten since the night before. The nurse came out to discuss medication options Valium or Versed. I told her that Maryn was given Versed at the last MRI 2 weeks ago and she was given Precedex for sedation. After some discussion with the nurse, I got the impression that Maryn would be undergoing the MRI fully awake. I told her this was going to a problem as Maryn has always been asleep for the procedure. She said they do this with lots of kids and never have a problem. I felt my heart sink, I knew it was going to be another difficult day. The nurse gave Maryn Valium and said she would be back in 15 minutes to take her back for the procedure. The first 15 minutes were filled with lots of laughter from Maryn, silly stories and "what ifs", what if wagons were really tubbies, etc. I knew the medication was working and eagerly waited for the nurse to arrive.

The second 15 minutes went by and Maryn was restless and crying. I laid down on the couch with her in my arms and stroked her hair, trying to calm and comfort her. I felt the protectiveness and subsequent anger rising up in me.

Memories from her MRI just 2 weeks earlier came into view; the doctors had given her Versed to help with "separation anxiety", and said they would be back in 15 minutes to take her back for treatment but didn't return until 2 hours later when the medication had almost completely worn off. I watched the doctor carry my baby down the hall, away from me, crying and screaming, holding her arms out for me and there was nothing I could do. That feeling of helplessness, the inability to control the process of how things are done and in what time frame, and the hurt it causes Maryn made me so angry. For the first time in my life, I actually saw stars and wanted to punch the nearest wall. All I could see were the operating room doors closing and instead of pounding the wall or the door, I turned around and walked back down the hall to the waiting room. I could feel the sting of the tears on my face, which couldn't compare to the sting I felt in my heart.

Sitting where I was today and remembering the events from 2 weeks ago, left me with a feeling of deja vu. I was not going to let her go alone and crying this time. Right then I determined that I needed to say something to change the outcome of events. I scooped her up in my arms and went to the front desk and demanded to speak with whoever was in charge. Someone finally came, I told them the she needed to be put to sleep, she would not go into the room and cooperate while being fully awake. The nurse in charge said that she would give Maryn Versed this time and that it would work. I told her no, that it would not work. I explained that I have been through 4 others MRIs with Maryn and I know what will and will not work. I told her that she was torturing my daughter and asked her why she needed to put her through all of this needless pain and aggravation. She explained their center's "procedure" to me, and then said she would speak with the doctor and return immediately.

She returned a few minutes later with the doctor. He explained that by state law their facility is not allowed to put patients under general anesthesia. He said they simply are not licensed to do so. I explained that it would have been nice to have someone tell me that the day before when I called for "instructions" on the time frame for the last meal and liquid. He apologized for the miscommuncation. I told him I would not send my daughter in there alone. To my surprise, both the doctor and the tech performing the test told me I could be in the room with Maryn. This was never allowed at the hospital in Utah. The doctor explained the need to give Maryn Versed, the second medication. Knowing that I would be in the room with her, I agreed. Once we got into the room I laid her on the table, she began to cry. I picked her up to try and calm her. The tech and the nurse told me that if I wanted to I could lay with her inside the machine. Again, I was completely (but thankfully) surprised. I laid her down to check for coins, keys, and other metal objects on me, removed my shoes and put in the earplugs given to me. I could tell by the look on her face she was still crying. I helped the tech put the plugs in her ears and get her positioned in the machine. I then laid down somewhat to the side yet on top of her. The tech adjusted her head with foam pads and then placed what looked like a helmet above and around Maryn's head. We were then moved into the machine. She was still crying, so I told her to suck her thumb and reminded her that I was there and I would not leave her.

As the machine began to make a huge whirring noise, Maryn started to cry again. She was wiggling her head and trying to reach her ears. I heard her scream the noise was hurting her ears. I moved her hand, put her thumb back in her mouth and tried to cover her ear with my hand as best I could. Shortly after, the nurse tapped my leg and handed me a syringe. She said I needed to give Maryn more medication through her catheter. I told her my hands weren't clean, she said it was fine just to give it to her. I twisted the syringe onto the end of catheter and inserted the medication. The nurse gave me two more syringes. With the last medication, I was told to remove the protective blue tip from the catheter (because the syringe wouldn't fit) and insert the medicine. I did this, feeling heartsick because the blue cap was the only protective barrier between the outside environment and the direct line to Maryn's heart. A million questions were racing through my mind, most of which were concerns about germs getting into the unprotected tube leading straight into her aorta. Once again the thought came that I shouldn't go through with this or any treatment because it was hurting her and that was the last thing I ever wanted to do. As I endure this nightmarish hell that is my life, a little voice reminds me, "if you choose not to get treatment, you know how this will end, so what other choice do you have?" The sad truth is, I have no other choice, this is our only hope.

So with the test done, I carry her out of the room. They show me her scans on the computer screen, which look totally blurry. The doctor says he can still make a good report and, by this time, I really don't care. We got our MRI in compliance with FDA regulations, at what expense to my child, the insurance company and to me is really of no concern to anyone, as long as the little black box gets checked.

Feeling Helpless

2009-11-18T06:46:00.002-07:00

I called Texas Children's Hospital this morning at 7am to schedule Maryn's appointment. The earliest they can get her in is January 29, 2010. I told them that was not going to work and explained Maryn's situation. The lady said that is what her computer shows her and that is all she can do. She said that the doctor can call and try to get and earlier appointment. I told her the doctor instructed me to call and make the appointment. She also told me that Texas Children's Hospital does not do PET scans, so Maryn would have to go to St. Luke's Hospital to have that done. How is that the Burzynski Clinic does not know this? I am feeling very angry, frustrated and helpless right now.

I called the clinic and left messages with Drs. Burzynski and Acelar. I couldn't get Dr. Szymkowski's number or I would have left a message with her also. I am very upset, because I did exactly what I was instructed to do before we left Utah. I had her Broviac line put in, we had her MRI completed and arrived within two weeks from the date of her last MRI. I was told that if I did all of those things that Maryn could start treatment on Monday, November 16th. This is not what happened. If I had known that the clinic would not do what they promised, I would have done things differently for sure.

So, now I wait........

Testing Delays Treatment

2009-11-17T21:35:00.005-07:00

So I found out today at 4:30pm that I need to call Texas Children's Hospital and push for testing this Thursday. It was my understanding that Burzynski Clinic would call and arrange the testing, but now they are telling me to do it. Of course, I called the Medical Imaging Department at the hospital and no one answers because it's almost 5pm.

I'm beyond angry and frustrated. I feel helpless and at the mercy of every doctor, hospital and medical establishment I come in contact with. By Friday, we will have been here one week with no treatment begun. I have two other daughters at home, whom I dearly miss and want to get to back to. Not only that, with each passing day, Maryn loses ground and the tumor grows.

Does anyone have any clout, push or connections with Texas Children's Hospital who can get our appointment scheduled by Thursday? I am going to plead my case tomorrow and hope for the best, but everyone knows it will get done for sure with a connection of some sort.

Update: I am so thankful for good friends. One does have connections and hopefully can get this sorted out for us tomorrow. Thank you.

First Day at Burzynski Clinic

2009-11-16T18:34:00.010-07:00

We arrived at Burzynski Clinic today. The office wasn't at all like I thought it would be. People say its a scam and that he rips people off, so I was expecting a pretentious, elaborate office. His money certainly does not go into the appearance of the clinic. It was clean and comfortable but not at all extravagant.

Once we got signed up, an assistant came and took Maryn to be weighed and measured. She was ok with this, she's an old pro.

After the formalities we waited in the conference room for the doctor.

It's very important to smile big when getting your picture taken.

We finally met with one of the doctors at the clinic. She explained to us that there are two treatments the clinic provides. The first one is the "antineoplaston" therapy that is currently part of a clinical trial. They have received the go ahead to begin Phase 3 but Maryn would be part of the Phase 2 portion of the trial. The only difference is that Phase 3 participants are required to undergo radiation concurrent with ANP therapy, and since Maryn has already completed radiation she would need to be in the Phase 2 portion of the trial.

She explained that the medication would be delivered through a pump that would be connected to Maryn's tube in her Broviac line. The dosage would be adjusted based on side effects. There would be two bags of antineoplastons, whose names I cannot remember. They would need to be connected every 4 hours. She would have a period of time during the day, up to two hours where she would not need to be connected to the pump. The doctor said this type of therapy is more effective in brain tumor patients.

She explained the side effects, one of which is swelling of the tumor from treatment. She explained that the clinic prefers to put their patients on Decadron as a precautionary measure. I asked her how quickly Decadron takes effect if swelling occurs, she said immediately. I explained that I do not want Maryn on steroid simply as a precautionary measure and that if she should begin having problems from swelling then that's when she should receive the medication. I am fully aware of the side effects of steroids and do not want to needlessly put Maryn through this. There was also a risk of swelling with radiation, but she came through just fine and did not need any steroid medication. I am hoping with her diet and supplements we can keep swelling to a minimum.

The other side effect would be electrolyte imbalance, particularly high sodium levels whose symptoms would show up as confusion and lethargy. The doctor did say that because Maryn's tumor is the more aggressive kind, she has greater opportunity for a better outcome, because the medication works better on high grade tumors.

The second therapy is called "targeted gene therapy". This is where the doctors test for the presence of 4 major genetic markers: VEGF, EGFR, HER-2 and C-Kit. Based on the presence of any one or all of these markers, the appropriate medication is given either orally or through infusion. There are also minor genes tumor markers that cannot be tested and for this they have had success using sodium pheylbutyrate.

I asked if it was possible to give both therapies at the same time. She said not in the United States, it is not allowed. I asked her what countries allow both therapies to given together. She said Canada, Germany and they are working with Japan on getting something set up. I asked if there were Burzynski offices in these countries, she said no. The procedure is that once the patient comes to the clinic, the 1st doses are given here. Then when the patient goes home medications for each therapy can be shipped and the patient can administer them in their home country. For a split second, I thought about moving to Canada. I believe, for reasons that are too long to explain in this blog entry, that Maryn has a better chance if both are given at the same time.

Finally, Dr. Burzynski himself, showed up and reiterated what the previous doctor had said. However, he added that Maryn needed to have an MRI and PET scan before we could begin treatment. That is not what I told over the phone, so I was unhappy, to say the least. I was told they would set it up at the children's hospital here and she should have the tests done by Wednesday.

I then finalized the financial side of the treatment; they drew Maryn's blood for the lab tests and we finished around 4:30pm, just in time for rush hour traffic.

Texas

2009-11-15T21:17:00.007-07:00

There are two things I have learned about Texas. What I hate: the traffic. It's agonizingly slow, no matter what time of day you travel. The highways are like driving in bowl of noodles, spiraling round and round in every direction. I am disoriented because there are no mountains, so I have no sense of direction whatsoever. What I love: the people. I have made friends with the most amazing people, complete strangers, that have offered to help me out with food, juice, going to the grocery store, a place to stay, whatever I am in need of. Even Texan drivers are nice, for the most part. I only got honked at once when I ended up going the wrong way down a one way street. :)

I guess there are 3 things I have learned about Texas. The third thing is, everything is bigger in Texas. My hair is naturally curly, so as the day goes on it gets curlier and bigger than the hour before. It's ridiculous; I have just have to tie it down to keep control of it. Also, the bugs in Texas are bigger. I found a giant red mosquito in my bathroom towel.....after I tried to use it. Ouch! I also found a LARGE insect in the kitchen. I have learned to handle insects over the years but not when they're so large you can't pick them up and squish them with a paper towel. ugh! I had to call the Texan lady of the house for that one. She is used to big bugs, I'm sure.

By the way, I absolutely love our host family. Being here has felt like home from the beginning, nothing weird or creepy going on, thank goodness. :)

Dressing Change

2009-11-14T21:45:00.015-07:00

Today the nurse came to change Maryn's dressing and flush her line. I was amazed at how much I have changed. When she had her Picc line placed in June and I was instructed to care for it, I couldn't do it. I couldn't even watch it being done. This time I watched the entire process and feel as though I can handle doing it myself.

Before we left Utah, I was instructed by the home health nurse to flush her line with saline and Heparin every day. Today I was told no Heparin. What to do? When the line was placed Burzynski asked for a double line because sometimes the lines get plugged, they said. However, Maryn's oncologist said that leads to a greater risk of infection, so we went with one line. I have decided to continue using the Heparin, since that's how it was done with her Picc line and that's what the nurse in Utah instructed me to do. I realize that Maryn is just a number, a patient, to the doctors, so I am responsible for being her advocate. I am very thankful the nursing agency in Utah sent me here with adequate supplies, or I would not be able to take care of her adequately.

I think some part of me has gone numb in order to survive this ordeal. I look at her line in her chest and it doesn't make me want to pass out anymore. Some people say "God will never give you more than you can handle." I disagree. I think he sometimes does give us more than we can handle, but I also believe that he gives us time to grow into what he needs us to be, so with a few months behind me and huge mental and emotional changes, I guess I'm ready for what lies before me. I am definitely not the same person I was 4 months ago.

She was very nervous to get her line changed. I was holding her in my arms.

No Anonymous Comments

2009-11-14T21:45:00.008-07:00

Wow, I had no idea that so many people read my blog. Due to the overwhelming amount of emails and comments I have received, I have decided to leave my blog open and just blog comments from "anonymous" people. I hope this solves the "troll" problem. Thank you to everyone who sent me emails and comments of love, encouragement and hope. I love you all.

DIPG Host Family

2009-11-13T20:53:00.012-07:00

We arrived at the airport at 6:30 am this morning. We were 30 minutes late because Maryn was in alot of pain from the surgery yesterday. I tried to lift her out of bed and she cried that it too much. I tried cradling her in my arms but it still hurt. I told her she could stay in her pajamas for the trip but that we had to get going.

Jane and Robin Morris with Continental Airlines were waiting for us. We whizzed right through getting our bags checked, going through security and getting on the plane with the help of another Continental representative and a TSA representative.

Our host family met us at the airport in Houston and took us to get a rental car. Maryn took a quick liking to the kids in the family. As we as we arrived at the house, they were off to play. The family has 3 kids, a boy age 7, and two girls ages 3 and 5. Maryn thinks its funny that she is 4, so together they make 3, 4 and 5.

They spent some time this afternoon digging in the dirt and picking up some worms. She found a white one, we decided to name it grubbie.

Restricted Access

2009-11-11T20:50:00.004-07:00

I created this blog so that I could have a place to share my journey, which include struggles and heartwrenching choices, being in a very dark place as a DIPG parent. People who have not experienced having a terminally child cannot possibly relate to the helplessness and hopelessness that a parent feels. I initially thought my blog would be a place where friends in my life would be able to receive updates on Maryn and provide feedback in a loving, encouraging, supportive way.

Unfortunately, people have taken to disparaging myself and my ex-husband and my choices. It's no secret that our relationship has been strained to say the least during our divorce; regardless, I have a 13 year old daughter who regularly reads my blog, and I find it highly inappropriate that people are bashing both of her parents.

My intent is to surround myself and my children with a community of friends who support me in my decisions, whatever they may be, whether they agree with them or not. This is not an easy road to travel by any means.

Because of the negative comments I am receiving on my blog, I have decided to grant access to only those people whom I know and trust. I apologize that not everyone will be able to read future updates on Maryn's progress and how our journey is going, but this is difficult enough without all the negativity arising from some of the content I am posting. This is life, this is real and I'm not going to fake it for anyone. When I am angry, that's what I am, when I am sad, that's what I am, when I am happy, that's what I am.

I don't need to hear negative comments that I have no "tact or reason", etc., etc., etc., Like I said, until you have walked in my shoes, please don't judge. Even if you think Burzynski is a "scam", why would you share such negativity with me? I am walking through the darkest hour of my life and I need hope.

Please feel free to email me and if I know you and trust you, I will give you access to my blog.

annette.cella67@gmail.com

Oh, by the way, I never sent (and don't plan to) the letter but it did feel good to write it and post it here.

Letter to News Media

2009-11-11T17:58:00.004-07:00

I have decided that after everything that has happened, it would be in the best interest of the public and children who may follow in Maryn's footsteps if I send this letter.

Dear _________,

A few months ago you did a report on my daughter, Maryn Cella. She was diagnosed with an inoperable brain tumor in June of this year. We were given the prognosis that she has 9 to 12 months to live. We were, and still are, raising money to get her to the Burzynski Clinic in Houston, Texas. At the time her oncologist was in full support of us seeking "alternative" treatments because conventional medicine provided no other options for us. He stated that he was in full cooperation and that he would do "whatever needed to be done" to assist in this process.

We are scheduled to leave for the clinic this Friday. Part of her treatment in Houston requires that a Broviac line be placed in her chest so that she may receive the alternative chemotherapy treatment. The Burzynski Clinic says that it is standard practice for the patients to have the line inserted at the hospital in their hometown before going to Houston for treatment. They also stated that it is a rare occurrence when a patient has a difficult time getting this done at their local hospital.

The clinic also informed me that if I do have to have to procedure done in Texas, their local hospital requires payment in full before proceeding with surgery. The doctor was not sure of the exact cost but said it would be in the range of approximately $3,000. She also said that if Maryn has to have the surgery done in Texas, she will have to have another MRI because FDA restrictions require an MRI to be taken within 2 weeks prior to beginning the clinical trial. All of this would further delay her treatment.

I have been getting the run around from the hospital for 3 weeks now. As of yesterday, the hospital still refused to put the line in for my daughter. Around 4:30pm, in an act of final desperation, I notified her doctor that I would be contacting the media to make the public aware of the events that have occurred over the past few weeks. Ten minutes later I had the ok that the procedure would be done Thursday morning.

I spoke with the hospital today and was informed that Maryn's surgery would start at 12:45 pm tomorrow. I received a call this evening that said Maryn is to check in at 12:45 with her surgery at 2:15pm tomorrow. Because of the late surgery time, I am now in the difficult position of deciding whether or not to have my daughter fly out Friday morning. This would put her on a plane little more than 12 hours after surgery, which is worrisome for me. If the hospital had honored the request I placed 3 weeks ago, we would not be having an issue this late in the game. I feel as though the hospital and her doctor have not had my daughter's best interests in mind.

I am frustrated that my daughter has to endure more than she should have to because of red tape and bureaucracy. I am sure that my daughter is not the only patient who has had this experience; I believe she is the face of many children who are terminally ill, told by the doctors there is no hope. When parents do find hope, the doctors and the hospital drag their feet in being cooperative with providing the care necessary to allow pursuit of "alternative" treatments found. These children are terminally ill, for some, this is their last chance for hope. For my daughter, her tumor is progressing and we don't have much time to find a miracle. Children and their parents should not have to endure this type of treatment from the medical establishment. Dealing with the illness is difficult enough.

Hoping you can help in some way.

Annette Cella

Another Change

2009-11-11T17:39:00.003-07:00

I just got a call from the hospital. Maryn's check in is at 12:45 not her surgery. She is scheduled for surgery at 2:15pm. There is no way that I can feel good about putting her on a plane little more than 12 hours after surgery. I don't know if Continental can reschedule our flight for possibly Saturday night or Sunday morning, but I need to call and ask. Wish me luck!

I won't go on another rant about how this all could have been prevented if it were not for people who are supposed to have her best interests at heart interfering with the process.

Frustrated

2009-11-11T15:43:00.002-07:00

I am frustrated, angry and stressed beyond belief with this whole process of getting Maryn's line inserted. She is scheduled tomorrow at 12:45pm, which gives her less than 24 hour recovery before she gets on a plane to go to Texas Friday morning. If I could sue someone right now I would, I'm so angry. I requested that this procedure be done weeks ago. I called the surgery scheduling line and, of course, they cannot change her surgery time for any earlier and said if I want it done tomorrow that's the time I have to take. Aargh!

I have already been struggling today with the thought that I am responsible for putting my daughter through this traumatic process. I know in my heart that either way, she is going to suffer from the effects of this tumor. I feel this intense need to try and save her. I am only 42 years old, if I live until the age of 80, that means I get to spend the next 40 years of my life with the daily reminder that I loved and lost one of the greatest loves of my life, my child. I have to know in my heart that I did everything I could possibly do to save her. Even though I know this has to be done, it is still a heartbreaking, gut wrenching reminder of the reality of Maryn's life.

This entire medical process has been time consuming and extremely frustrating. Somewhere in all of this, I am supposed to find time to spend and be happy with her. I feel I am being robbed of that by fighting with the medical establishment to get things done; it is hard enough as it is.

My question is, how does one find the time to experience joy and love a child while inner emotions are competing with the desire to save a life (and what that involves), yet wanting to bring nothing but happiness to the one they love and also dealing with the overwhelming sadness of what the next step is in this process and what the ultimate outcome may be.

Time is definitely too short for all that I need to get done. All my efforts may be in vain, at that point I will have to believe in the fact that I will get to do nothing but play with and love her when we meet again someday.

My Life

2009-11-11T10:59:00.001-07:00

I'm feeling stressed out and frustrated today over many things of which, most importantly, is my daughter's health. God, I just don't want this be my life.

Broviac Line Back On

2009-11-10T16:03:00.003-07:00

I spoke with Maryn's oncologist again, after an intense discussion and a few other phone calls. It has been determined that the Broviac line will be placed before we leave.

Broviac Line Surgery Canceled

2009-11-10T15:23:00.005-07:00

I just spoke with the pediatric surgeon regarding Maryn's treatment. She said she just spoke with hospital Quality Management and they told her the oncologist said that the patient's parents had decided not to go through with the surgery. I have called Maryn's oncologist several times and he does not return my calls. People in his office are less than helpful when I call. I am very frustrated.

I spoke with the doctor at Burzynski Clinic. We will have to go to a hospital in Houston to have it done. They will require payment for the procedure up front. She is not exactly sure how much it will cost, but estimates about $3,000. In addition, because Maryn's oncologist refuses to place the order to have the procedure done, Maryn will have to undergo ANOTHER MRI while she is there. This is going to be more stressful for her, more expensive for us and the insurance company. I see now how it is that children who are terminally do not survive; access to appropriate care is delayed even if the child has adequate medical insurance. Bureaucracy and red tape get in the way of saving lives.

My question here is: who works for who? I thought the doctors worked for the patients, apparently not. Does anybody want to the local media for me and see what they can get done ASAP? The surgeon is willing to do it, it's the oncologist standing in the way.

Updates

2009-11-10T13:34:00.003-07:00

Good news! I slept through the night. :) It's weird when it happens but I'm always grateful. Here are the updates for everything that is happening:

I want to give a huge hug and heartfelt thanks to my dear friend Ruth and her connection with Dr. Harris, because of them we are able to get Maryn's Broviac line put in this Thursday. Words cannot express the extent of my gratitude. I try not to think about the details of the procedure that will be performed on my child, because it has to be done. I would much rather have it done here in a familiar environment with family and friends around than in Houston.

I also want to give a huge hug and heartfelt thanks to my new dear friend Jane. She was able to arrange flights plans for us. Continental Airlines will be flying us to Houston Friday morning. From talking with her, it is my understanding that we will be able to bypass the long security line and that Maryn's supplements will not have to be x-rayed, which is good because it ruins their potency. In addition, every extra piece of luggage I have will be transported free of charge, which is also good because I still may need to take all of her raw food kitchen equipment.

I am starting to receive emails from people who may be able to help prepare Maryn's raw, vegetarian meals and juice while in Houston. This would be a huge blessing if it can happen. I would love to be able to focus all of my time and attention on Maryn and not on food preparation.

I now understand how God is able to move mountains here on Earth. It is through people who care about others enough to do what they can to make things happen. As a friend of mine once said, "angels don't always show their wings." I thank God everyday for all of the angels that have come into our lives to move mountains to save my sweet daughter.

Too Tired

2009-11-09T21:21:00.000-07:00

I had a very busy day today and need to blog updates, but i'm too tired, so I'm going to bed. I will blog when I wake up at 2am, as usual. :)

Broviac Line

2009-11-09T08:07:00.002-07:00

Well we've hit a snag in the process. Primary Children's Hospital initially said they could put in Maryn's line when we got ready to go to Houston for treatment, now says that they cannot put in her line. I was prepared for this. In talking to other parents who have chosen to use Burzynski Clinic, they said that they have had difficulty getting lines put in for their children once the doctors found out they were going to Burzynski. I preferred that she have this procedure done here locally because it is a familiar place with family here. It looks like we may have to have it done in Houston. I guess this is probably how some children with life threatening illnesses don't survive, red tape and bureaucracy. What to do now.....? I guess I will call some other local hospitals first.

New Friends in Houston

2009-11-08T20:15:00.002-07:00

I am blessed enough to have made contact with 2 people in Houston. One woman has offered to show us around and to make sure that Maryn has access to toys, crafts and books. This is one less thing I have to pack and take with me. She has been kind enough to offer to show us around, which will be great because I have never been to Houston. The other woman has offered to organize a group of people to help me with preparation of Maryn's raw food while we are there. It will be a relief not to have to pack up my kitchen equipment and less stressful because I won't have to spend my time preparing and making the food and juice. It will allow me to focus my time and attention solely on Maryn, who deserves every moment to be filled with hugs, kisses and laughter.

We are still waiting on flight details, a place to stay and car availability, among other things. I am hoping tomorrow we will have all the details.

Over the past few days, Maryn has said some really cute things that I have to share. On the first day, she told me that when she "grows all the way up", she wants to be a mermaid. On the second day, she told me that when she "grows all the way up", she wants to be a doctor and give shots to kids with tumors. On a different day she asked me if when she is a mommy and "doosn't" (doesn't) know how to make raw food, if I will come to her house and help her. She told me that wants to have one baby and "that's all". lol She is so beautiful. It made me cry because I realized that I have done one thing that I set out to do, and that is to give her hope. Hope that she can beat this and hope that she will have a future. She never talks to me about dying except for an occasional conversation she hears from other people when she is away from me, but I always reassure her that we are going to "get this tumor gone." She truly believes the doctor in Houston will "get that ball out of my head," and so do I. I believe hope is the best thing that we can have right now. I know that alot of people are praying for her and I hope that people will begin to pray for the doctor, that he will know the right therapy to give her. This has to work. I just can't imagine one day without her.

Moving Forward

2009-11-07T09:14:00.002-07:00

I finally got to sleep last night. I laid next to Maryn, so close I could smell her hair and hear her sucking her thumb while she slept. I cried and cried until I finally fell asleep, asking God why her, why us, why now? My heart and soul hurt so much for my sweet baby girl.

My kids have been through so much over the past few years, I can't imagine why we would have to endure another painful, traumatic situation in our lives. It is so difficult to go through this alone, and to know the right thing to do at every turn. I'm doing the best I can to make decisions, without knowing the outcome, by trying to listen to my gut instinct and hopefully make the best choices for Maryn.

I am so grateful to my friends who are walking through this with me. I don't know where I would be without them. I just want to say thank you to everyone who has been so supportive of me, who helps me to think through decisions I need to make and who willingly walk this road with me on good days, but especially when I am having bad days. You know who you are. You have seen the best and the worst of me, and I thank you for loving me and my girls enough to walk this journey with us.

Angel Flight

2009-11-07T01:59:00.004-07:00

I've been worried all night about our upcoming trip and how difficult it will be for Maryn to be in the car for 23 hours. I wish I could fly her to Houston and then drive my car full of kitchen stuff down separately, but she will have a fit if she is not with me, so that won't work. I've been talking this through with a friend and she mentioned an organization called Angel Flight. They might be able to get us to and from Houston and possibly take my kitchen supplies. I am hoping this works out, because I don't want the trip to be any more difficult for her than it has to be.

She has a friend who works with Angel Flight and will contact him to get details. I just found their website and sent them an email also. Let's hope this works out. I should have stuck with my plan, and made all the arrangements, from the beginning which was to fly her to Houston if there was tumor growth. Denial (wanting to believe the tumor isn't there because she has no symptoms) can be detrimental in many ways. It led me to make some poor decisions which I am now paying for; I am grateful for friends who can help me keep my head on straight during this difficult time. It is difficult to make good, logical decisions when your head and heart are swallowed up by a sea of emotions.

Taking a Trip

2009-11-06T11:50:00.003-07:00

I have made the decision to take Maryn to the Burzynski Clinic sooner rather later. We leave next week. It's been a heart wrenching decision because, whichever choice I make, Maryn's life will change. I realized that every moment I am not actively doing something her tumor is growing. I had a conversation with a friend last night, telling her that once the tumor starts growing back, it grows like wildefire, faster than before. I got a sick feeling in my stomach and it dawned on me that the honeymoon period the doctor told us about is over. The tumor will not continue to grow at the same rate it did over the past two months. It will grow faster with each passing day.

We will be driving to Houston. It would have been nice to fly, but I will need a car once I get to Houston and can't afford a rental. Plus I need to take my kitchen equipment to make her juice and food once we get there. It is a 23 hour drive, which is not going to be fun.

I am waiting to hear back about a time next week to have her Broviac line inserted into her chest. I didn't want her to have to go through this again. It was partly the reason I wanted to delay her treatment, but delays only give the tumor a fighting chance.

We will be in Houston for 3 weeks, so we will be back by the first week in December, definitely in time for Christmas. I spoke with my friend Phil, who took his son to Burzynski. He said 3 weeks is how long it will take. He offered to fly my girls down to be with us for a few days, as well as find us a place to go for Thanksgiving.

My girls don't know yet, they will not be happy. I need to figure out arrangements for them over the next 3 weeks.

I need a good mechanic who can look at my car to make sure it's road ready, and not charge me a fortune. Any recommendations? It is an older vehicle and I'm hoping I won't have any problems with it on the way down.

I also need to figure out where we will be staying while we are down there. I have alot of things to do over the next 6 days, wish me luck!

I just wanted to say thank to everyone who donated money to our cause. Because of each and every one of you, Maryn has the opportunity to receive the best possible treatment and the best chance for survival.

Article on Protein Intake and Brain Tumors

2009-11-06T08:40:00.008-07:00

Someone brought this article to my attention, which confirms my gut instinct that brain tumors are related to nutrition, specifically protein intake. I just wish I had a knowledgeable person who could verify that I am interpreting this research correctly. The article also talks about cholesterol and fats relating to brain tumors. If I remember correctly from my Stats class, with an inverse relation if something goes up (sodium and cholesterol intake), it has a direct opposite effect on something else (brain tumor), which goes down. Can anyone help me out? If only I could put this all together. To read the full, complete article, click here.

research-article

Nutritional Factors in the Etiology of Brain Tumors Potential Role of Nitrosamines, Fat, and Cholesterol

Sara Kaplan¹, llya Novikov¹ and Baruch Modan¹^,2^,3

¹Department of Clinical Epidemiology, Chaim Sheba Medical Center Tel Hashomer, Israel
²The Stanley Steyer Institute for Cancer Epidemiology Research Tel Aviv, Israel
³Department of Epidemiology, Sackler School of Medicine, Tel Aviv University Tel Hashomer, Israel

Several possible risk factors for brain tumors have been suggestedin the past, including N-nitroso compounds, but with the exceptionof ionizing radiation, none has been consistently confirmed.The present study was aimed at assessing the influence of nutritionalfactors, including N-nitroso compounds, in the etiology of braintumors, specifically gliomas and meningiomas. One hundred andthirty-nine cases with confirmed brain tumors diagnosed between1987 and 1991 in central Israel and 278 controls matched accordingto age, sex, and ethnic origin were interviewed. Nutritionaldata were obtained using a semiquantitative food frequency approach.A significant positive association for both types of brain tumorswas found with high protein intake (odds ratio (OR) = 1.94,95% confidence interval (CO 1.03–3.63), while intake ofsodium was inversely related to both types of brain tumors (OR= 0.52, 95% Cl 0.31–0.87). Increased consumption of totalfat and cholesterol was inversely related to gliomas (high intakeof fat: OR = 0.45, 95% Cl 0.20–1.07; high intake of cholesterol:OR = 0.38, 95% Cl 0.14–1.01). However, neither fat intakenor cholesterol intake was significantly related to the riskof meningiomas. Although N-nitroso compounds were not foundto be directly associated with brain tumors, the data suggestedthe presence of an interaction between the effects of N-nitrosocompounds and protein intake and between N-nitroso compoundsand cholesterol intake. The data suggest that dietary factorsmay play an important, though yet undefined, role in the developmentof brain tumors.

brain neoplasms; cholesterol; fats; nitroso compounds; nutrition; proteins

Alkaline Water Machine

2009-11-06T07:24:00.003-07:00

I am interested in purchasing an alkaline water machine with ORP. I don't know much about these machines. I looked into the Kangen machine but apparently you have to add some sort of mysterious drops into the water to make it alkaline or something, which makes me think the machine doesn't work.

I would appreciate anyone willing to research these machines for me and provide me with the best machine available. From what I have read the machines have a high oxygen reduction potential and hydrogen (or something like that). The alkaline water is supposed to fill the tissues in the body with lots of oxygen, creating an alkaline environment. Tumors can't live in alkaline environments. Thanks for your help!

The Day After

2009-11-03T16:24:00.004-07:00

As usual, I didn't sleep much last night and I'm very tired today. I tried to make peace with things in the middle of the night, I tried to find comfort somehow in all of this. I decided that now was as good a time to read as any, so I found my Bible. The first page I opened to was in the book of James, chapter 5, verse 14. It says, is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. It dawned on me that its been awhile since I have had people praying over Maryn, and that I need to have that done more frequently. My goal is to arrange weekly visits for prayer and anointings for Maryn.

I emailed Kayla's mom to ask specifically, what a typical day looks like in Kayla's diet and what supplements she has used for Kayla. She was very quick at responding to my 3 am email. By breakfast I was reading her treatment plan in detail. I noticed a few things that she did differently, and since her daughter's tumor continued to shrink and mine isn't, her plan appears to be the better option. I have decided to switch gears with some aspects of Maryn's treatment plan. The China Study proposes a vegetarian only diet and my friend had her on a raw, vegetarian only diet. This has been extremely difficult to implement (the hardest thing I have ever done) but I believed it worked very well for Maryn in the beginning.

In June the radiation therapist said that Maryn's eyes would never fully recover and that if we were lucky, she would regain 30% of movement after radiation. She regained 100% of her eye movement and shows no symptoms at all. I believe this is due to the raw food, vegetarian diet and tons and tons of carrot juice. I also had my suspicions about sugar and its relation to her tumor. In June, her sugar tested extremely high at 142, it is now down to 61. Again, I believe this is due to the raw food diet, including all of the carrot juice that people have advised me against giving her, because of its high sugar content.

I will be starting Maryn on the cottage cheese/flax oil treatment known as the Budwig diet. I read stories today of people with brain tumors using this method and having their tumors disappear completely. Dr. Budwig stated that through her research, the blood of cancer patients was deficient in essential substances called phosphatides and lipoproteins. The blood of healthy people always contains sufficient quantities of these ingredients. She discovered that by eating the combination of cottage cheese and flax oil over a period of 3 months, tumors began to gradually recede. These must be eaten together since one triggers the properties of the other to be released. She has written books on cancer with a focus on fats, which fits with what I have been reading and thinking about lately.

Somewhere I read that cholesterol is linked to brain tumors. I also believe that cholesterol and fats are related (I am by no means a doctor or nutritionist, so please bear with me; just a mom trying to save her child). I wondered if the doctor had ever tested Maryn's cholesterol. I checked all her lab reports and it was never tested. I guess it is because she is a child and it is not considered standard protocol or whatever. So yesterday I requested that when they draw her blood they test her cholesterol levels. I was told the insurance company will probably not cover the test. I told them I would pay for it if it's not covered. I got her lab report this afternoon. I have no medical experience and am learning as I go to read lab reports. The doctor's office said everything was "within normal limits." The internet is a very valuable resource for me in learning about codes, numbers and what they mean. Here are her numbers:

Cholesterol Trig HDL VLDL LDL Chol/HDL
168 64 38 13 119 4.7H

The notes at the bottom of the sheet say that with no known Coronary Artery Disease or Peripheral Artery Disease LDL of less than 100 is ideal. It also states that HDL cholesterol less than 40 may be a risk factor (in addition to the several others listed).

According to http://www.keepkidshealthy.com/ borderline cholesterol levels are 170-199. Maryn's is 168, which is very close to borderline. Average LDL cholesterol is borderline between 110-129, Maryn's is 119. It says that if the LDL is borderline steps should be taken to reduce risk factors for coronary heart disease (smoking, being overweight, inactivity, high blood pressure) and the child should be placed on the American Heart Association Step One diet.

Because Maryn is not and has not been overweight, she doesn't smoke or have high blood pressure and is relatively active, I am amazed that her cholesterol levels would lie within the borderline to high range. I wish that I had known to ask for the cholesterol tests at the very beginning. My guess is that her levels would have tested even higher. It is of concern to me that she has been on a raw, vegetarian diet for nearly 4 months and yet she is still borderline to high. She has had very little fats and none of her calories have been from junk food. This leads me to a bunch of other questions. I know that people's bodies manufacture their own cholesterol and since plants do not have any cholesterol, could this be genetic? LDL is the bad cholesterol and that is the highest number on her test. Because her HDL (good cholesterol) is below 40, it is considered a "risk" factor. How do you lower a child's cholesterol? Could this be the reason for her tumor? Have other DIPG kids been tested for cholesterol levels? I so want to get my hands on that information. Maybe we can get Maryn's foundation to fund these types of tests for DIPG kids.

Anyway, this research leads me back to the Budwig diet and the types of fats in the cottage cheese and flaxseed oil. They contain the good fats, I believe. I don't know what I'm going to do yet with all of this information, but my maternal instincts tell me I'm on the right track. Now I just need to remember where I read about cholesterol and brain tumors.

MRI Results

2009-11-02T18:25:00.009-07:00

We went for the MRI today. It just doesn't get any easier, Maryn freaked out when the time came to insert the needle into her arm. Her dad had to hold her to get it in; she is very strong and I can't hold her still to do that. Plus I hate doing it.

While she was still in recovery, the radiologist called us back to give the results. It was like deja vu all over again. I had a sick feeling as we were walking back to look at the films. I have studied her tumor growth and size over and over again for months, I took one look at the screen and the sizes listed and knew it had grown. The radiologist said the growth was small, about 10%. I asked if it was true that even though it is a small growth it represents billions of cells, right? She said yes and that's why it is concerning, because it shows the tumor is still active.

We then went upstairs to visit with the oncologist. He said that Maryn's tumor growth doesn't fit the clinical definition of progression, which is 25%, but said that the growth is still concerning. Because the tumor grew, even a small amount, so quickly after radiation, indicates that it is probably a Grade 4 tumor. There are only 4 grades, 4 being the most aggressive.

After a long discussion about alternative vs. conventional treatments, he concluded with the statement that there is nothing that can be done, there is nothing I can, or anyone can do, the end result will still be the same. I asked him if he had ever heard of the book The China Study, that I just happened to have in my purse. The author is a nutrition biochemist professor at Cornell University. He said he had heard of it, but not read it. I asked him about another book I had called Beating Cancer with Nutrition. He said that no amount of nutrition anything would change the outcome. I went back to the China Study and discussed how this professor was able to turn on and turn off cancer in lab mice based on what they were fed. The doctor then said that while it is true that what we eat can cause cancer, there is no evidence that what we eat can stop cancer.

We also talked about glucose, which is what tumors love to eat. He said that it doesn't matter what we eat, that everything is turned to glucose and that's what our bodies use for energy. He said that if we limit the amount of glucose we can kill the tumor but we will also kill the patient. I asked then what difference does it make if we eat a candy bar or a carrot, are our bodies not able to tell the difference. He said that our bodies cannot tell the difference, it is all turned to glucose.

We talked about the Burzynski Clinic and possible side effects. He said he has seen patients come back with extremely high levels of sodium. I asked him if that was treatable and he said yes. He and my ex discussed at length chemotherapy options and steroids. I voiced my opinion several times that I am against using either of those treatments on Maryn. I stated that I want her to have the best quality of life possible, and not be bent over a toilet and laying in bed for the rest of her days. I want her to enjoy life as much as possible.

I left the doctor's in complete tears without one shred of hope left in my entire being. I am so confused, I don't know what to do. I have people telling me to take her off the diet, not to worry about Burzynski Clinic and just to take the money and fulfill her wishes. I have others telling me to keep her on the diet because it is doing her good and her condition could possibly be much worse. Before we came in for the MRI, I had decided that if the tumor grown at all then we would leave for Houston (Burzynski Clinic) within the week. However, after talking with the oncologist, he said that "whatever treatment you choose from here on out will change her quality of life. I was sitting in the rocking chair, she was sleeping in my arms. The thought of having her undergo procedures to get a port line put in her chest and spending the holidays in a motel room away from family was too much for me. What if this is her last holiday season? I want her to have happy memories of being with her family, learning to snow ski, sledding with me down the hill (we had alot of fun sledding last winter). I want her to be able to spend time at her daddy's and with all of her family on his side. I decided that we would postpone the treatment until after her next MRI in January. If the tumor continues to grow at the same rate, that means in two months it will have grown another 10%, which is not good but it will still not be the size it was when she was diagnosed in June.

I'm tired and so emotionally spent, but feel like I need to continue my search for what I should do. I know in my heart, I can't just let her go. I will have to sleep (ha ha) on this and figure it out tomorrow.

MRI Tomorrow

2009-11-01T17:23:00.004-07:00

Well it's been another long day in the kitchen making raw food for Maryn. On average, I spend approximately 6 hours a day making dishes, because everything is raw, things don't keep for very long. I've decided there must be an easier way, so I'm making items and then storing them in the freezer. I looked online but there wasn't alot of information on freezing raw food. I did read that low temperatures do not destroy the enzymes in the food like high temperatures do, so I'm hoping this is the answer for me. Today, I'm freezing carrot juice. It's an experiment; I will try it in a few days to see how it tastes and whether or not it changed to goop. I bought a Foodsaver from Costco and put all of the smoothie ingredients, including the spinach, in one bag. My hope is that it freezes and thaws well together without changing consistency.

Maryn had been waiting all day for me to spend time with her. It's frustrating for me because I spend so much time making food and juice that I never have time to just be with her. By 3pm I realized that I wouldn't be finished anytime soon, so we left and went to the park. My kitchen looks like a tornado hit it but I've decided I will never have things the way I want them, so I just have to take the time and make the time for things. We had fun at the park. I watched her running and climbing all over the place and still can't believe how good she is doing. She looked just like every other kid, except for the bald spots around her pigtails. There are no outward signs that anything is wrong with her.

She has another MRI tomorrow morning. I am hoping and praying for more shrinkage. I know that I am doing everything I possibly can. I'm completely exhausted; there are days I go without showering in my effort to get everything done and still spend time with her (today is one of those days). I rarely do my hair or wear makeup anymore, simply because I am trying to keep up with my life and all that needs to be done. I am torn right now because I am eager to find out the results of her MRI tomorrow but I'm also fearful of what the results might be. If the tumor has grown then we will be packing up and driving to Houston on the 15th of November. If there is continued shrinkage, then I will know that something I am doing is working and we will hold off on going to Houston until after her January MRI. I hate to have my family separated through the holidays. Olivia and Moriah are not happy about being away from us for so long, they both want to come to Houston. I tried to work out school arrangements so they could come, but it just isn't a workable option, unfortunately. So for many reasons, I am hoping for favorable results tomorrow.

You know, I do find it ironic that I spend so much time in the kitchen. Cooking was never my favorite thing to do, yet here I am, knee deep in recipes, menus, juicing, dehydrating, mixing, chopping, grating, freezing, and washing, washing everything that can't through the dishwasher. If it saves my child, though, it will certainly be well worth it. Please say your prayers tonight and tomorrow morning. Prayers that she will be comforted while they are poking her with needles, peace for me and most of all, for good results.

I am feeling frustrated right now because Moriah did not get her homework done while at her dad's this weekend, so when she comes home tonight I am going to have to deal with helping her get that done, and I still have three more things I need to make and a kitchen to clean before I go to bed tonight. Right now, though, I'm going to read some books to Maryn (she loves books).

Need Fundraising Help for Hope

2009-10-28T17:57:00.003-06:00

After reading the article I recently posted, I have decided that it is ok for me to ask for help. I have been paying for all of Maryn's alternative treatments i.e., chiropractic care, detox footbaths, laser therapy, supplements, aromatherapy (massage oils), exercise equipment, organic food, distilled water, and many more, on my own.

I have been struggling financially to pay for everything and decided that if I had to go bankrupt trying to save Maryn's life that's what I would do. It was a difficult decision, because I know that is not in the best interests for my children or me, but how can I put a price on my child's life and say, "oh, that's too much, I can't afford that, I will just have to let her go." I love her more than life itself, so I have to do whatever I can to save her.

I believe it was divine intervention that brought this article to my attention today. It helped me to realize that it is ok to ask for help with all of the alternative therapies we are using, in the hopes of saving her. It also made me realize how very thankful I am that her doctor has not pushed the use of steroids or chemotherapy on Maryn. In my heart I knew that would not be the best thing for her. She is still running, playing and living a normal life.

I would like to put together another fundraiser. I need people to help me do this. If anyone is interested in helping, please email me at annette.cella67@gmail.com. Does anyone have some good ideas on fundraising ideas? Raising money for these alternative therapies will help relieve a huge amount of stress in my life, and make it so that I won't need to look for a job working in the middle of the night to climb out of the hole I am digging to save Maryn's life.

Article on Alternative Medicine

2009-10-28T17:55:00.001-06:00

Alternative medicine, but to insurers, no alternative

By SHAWN DOHERTY | sdoherty@madison.com | Posted: Wednesday, October 28, 2009 2:30 pm | (12) Comments

MICHELLE STOCKER -- The Capital Times Part of Cari Hadac's nutritional regimen includes a daily dose of what she calls "green juice," a powder of vitamins and extracts from fruits and vegetables that is mixed with purified water.

Cari Hadac, 9, loves jokes, dancing and her pet fish, "except for the bully who eats the others," she says.

On Aug. 10, the Mount Horeb fourth-grader was diagnosed with a rare form of inoperable brain cancer, diffuse intrinsic pontine glioma. DIPG affects between 150 to 300 children a year in the United States. It is terminal, usually within 18 months. Cari's parents, Jim and Shannon, spent the weeks after that devastating diagnosis searching for help and hope. Doctors at UW Health told them radiation and steroids might buy Cari some time. But the treatments left the little girl bloated, nauseated and exhausted.

"It was horrible. She just lay in bed and turned her face to the wall," recalls her dad. "She was losing her spirit."

So the Hadacs made the gut-wrenching decision to stop radiation and try alternative therapies, including chiropractic adjustments, massage, acupressure, essential oils, herbal supplements and an organic diet. Within days, Cari was riding her bike to school again and playing with her two younger sisters, Ellie and Maddie. "It wasn't until we switched to the alternatives that she got her health and her spirit back," her mom says. Nobody knows how long the reprieve will last.

Now the Hadacs face another hurdle: how to pay for her care.

In one of the many paradoxes of our troubled health care system, the family's health insurance covered Cari's radiation treatments - around $2,200 a day - though the treatments made her sick and offered no real cure. Yet like most health insurance policies in this country, Blue Cross and Blue Shield of Minnesota will not cover the less expensive holistic treatments that are now helping her live more comfortably. The Hadacs have organized spaghetti dinner fundraisers to pay their bills. Advocates for alternative therapies, who include growing numbers of mainstream doctors, say this is absurd.

"All this family is asking for is what their daughter, who may not have long on this planet, needs to be at peace and reduce her suffering," says Dr. David Rakel, medical director of UW Health's Integrative Medicine clinic, which combines conventional and holistic approaches to patient care. "If we have evidence of a treatment that can do some good with very little harm, it should be covered. We can improve quality of life and health even if someone cannot be cured."

Rakel is not Cari's doctor, but he says her case is a tragic example of what he calls the "perverse incentives" and imbalances of a medical system in which health care providers are too often paid for treating disease but not for promoting wellness. "We see ironies like this every day," he says, citing as another example patients with high blood pressure and cholesterol prescribed costly statin drugs with potentially dangerous side effects instead of simple lifestyle changes.

"It's a backward system," agrees Dr. Brenda Trudell, co-owner of New Beginnings Chiropractic in Mount Horeb. She treats back pain in patients who she believes might have been spared years of surgeries, steroid injections and narcotics if they had been sent earlier for adjustments, massages and acupuncture. "It would be a lot cheaper if we were funneling them to conservative treatments first," she says. "People should at least be given the choice."

By the time Trudell treats some of these patients, she says, their anatomy has been so disfigured by the removal or fusion of bones and the accumulation of scar tissue that sometimes there's not much she can do. Advocates of alternative medicine contend that in our mad rush to high-tech surgeries and drugs - which, not coincidentally, are giant moneymakers in this country's for-profit health care system - our country has overlooked ancient holistic therapies that could relieve suffering and help curb the country's $2.3 trillion annual health care tab.

"It's just crazy that insurance companies will pay to amputate a diabetic's foot, but they won't pay for treatments that might have prevented that disease in the first place," says Bonnie Horrigan, a spokeswoman for the Bravewell Collaborative, a national research organization for integrative medicine. "This is a system set up to support itself rather than the patient."

Insurance officials admit that in cases like Cari's, their industry can seem cruel. The business gives them little choice, they say. "Look, it's heartbreaking," says J.P. Wieske, state affairs director for the Council for Affordable Health Insurance. "But the simple reality is that insurance companies need to rely on studies to see what on a population basis will be effective. Right now, radiation is the only treatment that has been shown to be effective for cancer. When you have a third-party payment system, you have to make decisions on effective treatments. You cannot make them on a case-by-case basis. I understand that it doesn't feel like a good decision, and yet when you look at the system, this is what you get."

Until very recently, much of the medical establishment dismissed alternative medicine as wacky and downright dangerous: In 1963, the American Medical Association even formed a "Committee on Quackery" aimed at shutting down chiropractors. But times have changed. Alternative therapies are gaining converts, even among the doctors who once shunned them, as evidenced by new names that reflect this new partnership: complementary and alternative medicine (CAM), and integrative medicine. The Midwest lags behind the coasts, but Madison's Yellow Pages lists close to 20 acupuncture providers - up from a handful just a decade ago - and more than 50 massage providers.

The once-scorned chiropractors are abundant, too, with more than 150 in the Madison area. Cari's hometown, Mount Horeb, is much better known around the world for chiropractic care than trolls, thanks to the Gonstead Clinic, founded in 1939 by chiropractic pioneer Dr. Clarence Gonstead. The area's biggest clinics, including UW Health, Meriter, and Dean, now proudly tout their various alternative services.

In 2006, nearly four out of 10 Americans used CAM treatments, spending $33.9 billion on them, according to a survey conducted by the National Center for Complementary and Alternative Medicine, an arm of the National Institutes of Health. Some seek relief from such life-threatening illnesses as cancer and HIV. Others use the treatments as preventive medicine. But many rely on holistic treatments to manage chronic conditions - including diabetes, obesity, infertility, back pain and headaches - that their regular doctors and Western medicine can't fix.

"I was driven to try acupuncture out of desperation. I went to 16 doctors and specialists, and none of them knew how to help me," says Holly Fentress, 62, a Madison social worker who suffered from fibromyalgia. Fentriss says this soft tissue pain condition kept her from sitting down, walking in the mall or lifting her arms to change a light bulb. She scraped together $65 once or twice a week for acupuncture sessions. Today, she says, she is cured. "I would have gotten better a lot sooner if my insurance had just paid for it instead of wasting money on me floundering around," she says. "I don't know why they don't pay for it - it's one of the oldest medicines in the world."

Senator Tom Harkin, D-Iowa, a longtime supporter of nontraditional medicine, co-sponsored a proposal during the health care debate this summer that would have required health care plans across the country to cover licensed alternative medical providers, but the amendment died in the sound and fury of the health care debate. Washington is the only state to pioneer a parity bill on its own. Around a dozen states, mostly on the coasts, also mandate coverage of acupuncture, and a handful mandate benefits for massage treatments, according to research published in the Nutrition Business Journal.

But patients in Wisconsin are out of luck. Chiropractors, who have a stronger lobby than the other providers, are guaranteed insurance coverage under state law. Otherwise, carriers can decide if they want to cover complementary and alternative therapies. In the Madison area, only Group Health Cooperative has decided to cover alternative medicine as a regular benefit. Other health plans in the area offer discounts on the treatments as part of their wellness packages, along with coupons to restaurants and gyms, but they are little more than "marketing tools," complains David Bock, board president of the Wisconsin Society of Certified Acupuncturists.

Access to insurance coverage affects much more than a patient's pocketbook. Frequently, experts say, doctors won't even tell patients about available treatments if they're not covered by insurance. As a result, many patients are stuck discovering, investigating and paying for alternative medicine on their own.

And that can be a lonely, expensive and controversial place to be.

The Hadacs spent sleepless nights scouring the Internet for information and support. They found out about some of the holistic approaches they use with Cari from parents of other children with brainstem tumors. (Their treatment team at UW recommended against holistic care, say the Hadacs.) When they decided to stop Cari's radiation treatments last month after only 13 of the 30 prescribed sessions, Jim says, the radiologist told them Cari would probably die within two months. Cari's oncologist declined to comment on this story, saying she did not want to make the family's life any more "difficult" than it already is. But other physicians say that the world of alternative medicine is still largely unregulated, and that the Internet, in particular, is rife with so-called cures and hoaxes that can mislead and exploit desperate parents.

Jim and Shannon say Cari receives only safe holistic therapies from providers they either know personally, or have carefully screened through friends. "You can't hurt a 9-year-old girl by giving her green tea," says Ray Yingling, the owner of the vitamin store on Monroe Street that provides the family herbal supplements and vitamins.

The Hadacs believe that prayer can help Cari, too, yet while they pray for a miracle, they also talk about how to make their daughter's last days as happy and comfortable as possible. They say the natural treatments are safer and healthier for her than radiation and steroids, which were "poisoning" her body and which the doctors said offered no real hope for a cure. And they say a brain scan two weeks ago showing Cari's tumor had shrunk by 10 percent is proof they are doing the right thing, though doctors might argue it is proof the radiation had been working. "They handed us a death sentence," Jim says. "We chose a path of health and hope."

As for Cari, she complains she is sick and tired of "all the cancer stuff." She feared the radiation treatments at first, especially the part where she had to put on a mask and be bolted into a machine. But she's not crazy about her new dietary regimen, either. She misses potato chips and doughnuts, and demands a straw so she doesn't gag on her daily dose of what she calls "green juice," a powder of vitamins and extracts from fruits and vegetables that her parents mix with purified water. She doesn't mind her weekly appointments with a Mount Horeb chiropractor. She likes the peppermint oil Susan Ludington, who owns Blue Mounds Essential Oils and calls herself a "healer," rubs on her feet to help her relax. And, though she can be a bit ticklish, she loves her massage therapy sessions with Shelley Ferguson, owner of Madison's Bodyworks Massage and Nutrition.

Turning off the beaten path prescribed by doctors and insurance coverage means the Hadacs will need to come up with close to $500 a month to pay for all of Cari's treatments. They also have switched to an expensive organic diet, staying away from processed foods and sugars they fear "feed" the cancer. The Mount Horeb spaghetti fundraiser raised close to $28,000, they say, and what money they don't use they plan to donate to other families like their own struggling to pay for alternative treatments not covered by insurance. "Good for them," says Tami Wahl, legislative director for the Alliance for Natural Health, a coalition that advocates for "health freedom" - access to both natural and mainstream medicine. "A lot of people just stick to what their insurance pays for."

A lot of people are trapped. Karla Meyer, 39, has suffered from debilitating migraine headaches for years. They wreak havoc on her personal life and force her to call in sick to her job with the state one week a month. Her neurologist thinks acupuncture and craniosacral therapy - a gentle form of bodywork - would help, but her insurance won't pay. Yet it will pay thousands of dollars for 12 different prescription drugs that don't do her any good, she says. How would she make her case to the insurance company if she could? "I'd say, 'Look at my medical records. Look at all the work I'm missing,' " she says. " 'If you are truly there to help me get better, in the long run it would help me the most and be cheaper to pay for these treatments. But maybe you'd rather have me drugged out for the rest of my life.' "

Her neurologist is frustrated, too. Dr. Douglas Dulli, a neurologist with UW Health's Pain and Headache Clinic, says that many of his chronic patients would fare much better with acupuncture or massage than with what he can do for them. "As a doctor, I have a limited repertoire," he says. "I can just give pills, and frankly, a lot of the medicine I give is hazardous. But the problem with these much more innocent and helpful therapies is that patients have no access to them because insurance won't pay for them."

Duli is a believer in the power of alternative medicine: He once tried massage for a running injury. It worked so well, he said, he now goes regularly. "I can afford to pay out of pocket," he says. "What about all the people who can't?"

Insurance representatives say it is as unreasonable to expect a health policy to cover these kinds of treatments as it would be to expect an auto policy to pay for regular car washes. "Wellness is not something insurance typically pays for," says Wieske. "It's sort of like a car insurer doesn't cover routine maintenance. If an insurance policy covered every brake job and made sure the car was conspicuously clean so you don't have a smeared-up windshield, you could limit the number of accidents. But it would be prohibitively expensive."

Some agents consider these treatments a luxury and say footing the bill for them would lead to what the industry calls overutilization, or abuse, of services. Costs would spiral out of control for everybody, they say, just as they did when prescription drugs began to be routinely covered. "It's human nature that when you pay for something yourself, you're going to be sure you need it," says Dan Schwartzer, a lobbyist with the Wisconsin Association of Health Underwriters. "But when a third party starts paying for it, you'll do it even if you don't really need it. Who doesn't like to have a massage?"

Even if there is anecdotal evidence that these therapies truly help some people, insurance officials say they need proof. One problem with holistic medicine and the whole concept of wellness, says Wieske, is that it is very difficult to talk about objectively and to measure its results. Underwriters like to be able to plug costs and benefits into actuarial tables, and executives need to protect their companies from liability and malpractice claims. "I totally understand that there is a strong relationship between the mind and the body," says Dr. Ron Parton, vice president and chief medical officer of Physicians Plus Insurance Corp. "But what is covered by insurance still needs to be driven by safety and scientific evidence."

More research is needed. But who will fund it? "There's a reason drug companies and medical device companies pay for research," Peyton says, alluding to the tremendous profits they make as a result. "Who's going to make enough money selling massages?"

Advocates see the barrier, too. "There's not a great profit potential in health and healing. Many of these therapies can't be patented," UW's Rakel says. "Once you attach a for-profit motive to human health, we're lost."

Advocates say efforts to enact insurance parity also will be blocked by the drug industry and other powerful players who profit from the sick and view natural cures as competition.

But practitioners of alternative medicine are too fragmented and too stubbornly independent, at least right now, to organize and fight back. Many are ambivalent about becoming part of mainstream medicine anyway.

Dr. Susan Padberg quit her family practice at a local HMO and went to school to become a licensed acupuncturist because she "burned out" working within the system, she says. She had a caseload of several thousand patients and felt constrained by the 15-minute limit on patient visits imposed by insurance reimbursements. Today, she sees a few hundred patients a year and spends at least an hour with each one. While she earns much less than she used to, she is happier, she says.

CAM providers say that while they hope insurance coverage one day becomes standard for their clients' sakes, many say they want nothing to do with it. Most earn between $55 and $125 an hour before taxes - too little, they say, to compensate them for wasting time battling insurance companies. Many require the few patients who have coverage to pay up front and take care of the paperwork themselves. "On the rare occasions when patients do file for coverage, it's an absolute nightmare," acupuncturist Bock says. "I have to refile it three times, and it ends up taking two or three of my hours to get reimbursed."

Massage therapist Shelley Ferguson balks at being controlled by insurance policies, too. She can spend time with her clients that mainstream providers on a tight schedule regulated by insurance reimbursements rarely have. The personal side of healing is more important than anything else, she says.

There are scientific reasons for how and why the massages she gives Cari help her relax. The gentle strokes not only release the tension in Cari's neck and head, but restore circulation, blood, and oxygen to the area of the brain invaded by the tumor, she says. But it is the art of what she does that matters much more, Ferguson says - the time she takes to help heal, though not cure, a little girl with a scary diagnosis.

"I don't see Cari when she's angry, wondering, 'Why me?' Or scared, wondering what's going to happen next," Ferguson says. "I don't bombard her with questions or advice or procedures. I don't invade her body. We just enjoy our sessions together. She can relax and talk about the little funny things she's doing, like the Halloween party and what she's dressing up as. For one hour, she can be just a 9-year-old girl."

Sleepless Nights

2009-10-23T04:43:00.004-06:00

I'm having alot of sleepless nights lately. I'm frustrated because I have so much to do and not enough time to do it. Maryn is in her "honeymoon" period right and I just want to enjoy her, play with her, make memories with her, but I'm burdened with tending to the necessities of life. Everyday, I feel constant regret because I know I will probably not see this time next year with her and I have to keep telling her "just a minute", "not right now".

For the past 2 1/2 months, I haven't been able to cry or feel anything. I thought I was broken. I couldn't do much except exist and survive all that I have to do on a daily basis. Lately, though I can't seem to stop crying. Keeping her on the raw food diet has been extremely difficult and time consuming, there have been a few times lately where I let her eat "regular" food because I didn't have time to make dinner, for one reason or another. The guilt is unbearable, especially knowing what I do now about diet and its effects on cancer. I now believe that if this is the way to save a child, most parents probably couldn't do it, simply for lack of time and help. I understand why people look for a "cure" because taking one pill is far easier than changing one's diet completely.

Somehow, throughout all of this, I need to find a job. I'm drowning financially right now. Buying organic food and supplements is a very expensive endeavor. Hopefully, I can find something I can do from home at night. I can't work during the day and lose more precious time with Maryn. Somehow I have to make all of this work, it's very difficult being a single mom.

I also need to find time and remember that I have two other children who need me as well. My sweet daughter, Moriah, is not doing well at all in school. She is extremely angry and I am on the receiving end of it more often than not. It is difficult to know how to discipline a hurting child, do I let the behavior slide or tackle it head on? Lately, I have done both, which breeds inconsistency. I believe that is worse than choosing one or the other. I have decided that if her words and behavior turn to disrespect, she gets an hour of "hard" labor. I have plenty of work to be done around the house. She moved boxes from one side of the basement to the other about a month ago. I have a weed patch that used to be a garden where she can work off her hours as well. All I can do is tell her I love her and that I will always be here for her and hope that she will work through and past this.

I believe the stress of everything is finally catching up with me. My body is showing signs of being sick in different areas. I should go to the doctor, but can't, because I don't have health insurance (my reward for being a stay at home mom for 13 years), and I can't afford the doctor visits and prescriptions. Oh well, my life is what it is, I will continue on as long as I am able.

Looking for Volunteers

2009-10-20T05:35:00.002-06:00

After months of research for alternative treatments, transitioning to a raw food diet and in general raising 3 kids, I am ready to put everything I have learned into devoted practice. However, being a single mom, I am completely overwhelmed and constantly without enough time to do everything, which is why I haven't been blogging. I am looking for people who would be willing to help out Maryn's cause by volunteering in my home 1 hour per week. I need help with everything from raw food preparation, laundry, to helping with after school work. Would anyone be interested?

It's a Girl!

2009-10-19T19:20:00.002-06:00

Hi All, sorry for the almost month long delay in blogging. I have been out of my mind busy with life. I will catch everyone up soon (I could write a book, seriously). Anyway, tomorrow is Maryn's 4th birthday! She is totally symptom free right now, which I attribute to everyone praying for her and her mostly raw food diet and supplements. For months, one of her wishes has been to get a kitty, actually 2 kitties to play with. I decided to get her a kitten for her birthday. I got the kitty from the Humane Society, she is 2 months old. I didn't have a place to hide a kitten until tomorrow, so I gave the kitty to her tonight. She was so excited, she giggled and squealed and said, "I can't believe I have a kitty!" Maryn named her Pooh Bear, which is Maryn's nickname. lol

It was a long day and a good thing the girls were off from school today, because I needed babysitters. Before giving her the kitty, I went to the craft store and bought a wide pink ribbon that said Princess on it, wrapped it around her neck, took her home and gave it to Maryn.

I think all 4 of us have fallen in love with our new baby girl. :)

Raw Food Ideas

2009-09-20T20:55:00.003-06:00

I have been struggling with boredom, giving Maryn the same thing over and over again everyday, fruit for breakfast and oatmeal, salads and smoothies for lunch, with one soup she likes for dinner, and the veggie chips and guacamole that she loves. I stumbled upon fruit leathers during my research. They are extremely easy to make in the dehydrator and hopefully I can get her to eat the fruits she decided she doesn't like anymore, like raspberries. Raspberries have ellagic acid in them which makes them great for working against brain tumors; it is possible, through a transformation of sorts that I can get her to eat this delicious fruit. The fruit will retain all of its important enzymes because I will be slowly warming it in the dehydrator, not killing it with high amounts of heat. I am making some tonight. Will you keep posted when the "food critic" gives them the taste test.

Protocel

2009-09-14T13:19:00.003-06:00

I started Maryn on Protocel last night. This is an alternative cancer therapy that many people claim is effective at getting rid of cancer. It has no side effects, so after some more research, I decided it can't hurt. As always, I take everything that she does, so I tried it first. Nowhere on the internet or in books does it talk about the totally disgusting taste of this dark brown liquid. It left my tongue slightly numb, so I held off giving it to her for two days, thinking of how, exactly, I would get it down her.

I spoke with Braiden's dad (a survivor who is 4 years old). Phil has been giving Braiden Protocel for quite some time. He told me to give Maryn just 1/8 tsp. He said Braiden takes it straight and then chases it with a glass full of water. Immediately, I thought of the difficulty I have getting Maryn to drink carrot juice. I knew this was going to be tough. We discussed how cooperative Braiden is when taking it and strategies I could use. I gave it to her for the first time last night.

To my surprise, she took it without any tears, tantrums or fights. I think the carrot juice tastes much better than Protocel and am somewhat mystified by her taste preferences. I am also relieved and happy that this is not going to be a battle, because she has to take it 5 times a day. She has already taken it 3 times today with total cooperation. :)

I have decided that for the benefit of other DIPG parents, I will also post my lengthy research at the end of my blogs, when possible. I know most readers will find it boring, but it is very useful information for parents whose children have this kind of tumor.

RESEARCH:

MRI #2 Results

2009-09-10T21:03:00.008-06:00

Sorry for the delay in writing, I have been spending every spare minute researching everything there is to know about cancer and treatments, conventional and alternative.

Maryn had her second MRI on Saturday, September 5th. We met with the oncologist on Tuesday and he said her tumor had shrunk 75%, which is phenomenal. He said when a patient has 50% shrinkage it is wonderful and Maryn had alot more than that. He said to keep doing whatever we are doing because it is working. I believe the extra shrinkage is due to nutrition, so we are back on the raw diet.

MRI #1 taken June 17th, 2009

tumor size 31.3 mm 31.7 mm

MRI #2 taken September 5th, 2009
Tumor size 18.1 mm x 15.5 mm

The doctor said that even the portion of the tumor that was considered "high grade" has shrunk considerably. He did say to continue with the fundraising for the Burzynski Clinic, so that we are ready when it is time to go. The question of chemotherapy was brought up (not by me), and he said we could do it as a last resort if we chose to. As a last resort, however, I still believe in taking her to the Burzynski Clinic. My intuition as a mother tells me to continue with the alternative therapies. Chemotherapy will not add anything to her life and will definitely interfere with the quality of her life.

Being on the raw food diet is very difficult for us, but she is outside running, playing, keeping up with her sisters, getting dirty and just being a regular kid. She received a package in the mail today full of styrofoam popcorn, as I went to put it in the trash a gust of wind came and blew tons of popcorn down the driveway and all over the neighborhood. She had a great time with her sisters and their friends chasing down popcorn. I stood in amazement at how beautiful she is, running, laughing, picking up pieces of popcorn, being chased by Lucky, the neighborhood dog who loves her, giggling all the while. She is totally symptom free and a miracle.

We played in her playhouse this evening too, she made me "cake." My house was a mess and I had a million things to do (emails and voicemails to answer, blogging, etc.) but I just don't care, I am enjoying just being with her.

The doctor said to come back in 2 - 3 months for a follow-up MRI, so again, I feel like I am in a race against time to find alternative treatments that work. I could write a book on what I have learned. I feel as though I have stepped into another universe with what I have discovered. Right now I am waiting for some items to be delivered to my house, which I will discuss later. Please pray that I will be led in the direction of treatments that are best for her. I want her to live, of course, but I also want her quality of life to be as good as it can be, for as long as possible. I don't want her last days to be spent frail and sick, if at possible (no chemo!). Thank you to everyone who has given us love and tremendous support. :) I love you all.

Money Raised at Benefit Concert

2009-08-26T04:38:00.001-06:00

We raised $12,219.55 at the benefit concert on Saturday! Thank you to everyone who was involved either by attending, volunteering or donating. :)