In honor of Maryn's 7th birthday, I did what I promised I would do to honor her. I have transformed this blog of her life into an ebook. You can now find it on Amazon.com
http://www.amazon.com/Maryns-Hope-Memoir-Beautiful-ebook/dp/B009VL6L5M/ref=sr_1_2?ie=UTF8&qid=1351120110&sr=8-2&keywords=maryn%27s+hope
Wednesday, October 24, 2012
Thursday, November 18, 2010
MRI November 17, 2010
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
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
Wednesday, August 11, 2010
Fundraiser
Today marks the launch of Maryn's online fundraising campaign. Please visit http://www.giveforward.org/MarynCella to donate towards her cause. Please also forward her fundraising information to everyone you know. Please help spread the word. Thank you for your support!
Friday, July 23, 2010
News from Texas
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.
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.
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