Sunday

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

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

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

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

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

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)

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.