Patrick had a good day today. He had relatively minimal pain and his blood pressure only remained elevated for a short while. Alev met us at the hospital and walked us to the Ronald in time for Patrick to participate in his favorite activity – Science with Christine. He loves Christine and had so much fun making and erupting a volcano with her today. Afterwards, a group was making shrinky dinks in the dining room, so he enjoyed that as well. He had some QT with Rich before we went to the pub for dinner. Alev taught Patrick how to make origami animals while we enjoyed our first real meal of the week (not hospital food or pizza). It was a nice evening, and we were sad to say goodbye to Alev. You are truly one of the best people I have ever known, Alev! We can’t wait to come visit you for fun with no 3F8 involved.
As nice as the evening was, it had a significant black cloud hanging over it. Our little buddy, Jack, for whom I asked your prayers last night, did not receive good news today. The doctors had a difficult time entubating Jack because of the size of the tumor and its location next to the airway. Once that was accomplished and he was opened up (which was VERY involved, to say the least), they were unable to operate on the tumor. We don’t have a lot of details, but this was not the news that we were hoping to receive. Jack is currently being stabilized and moved to the PICU. The family doesn’t know what, if anything, they can do from this point. They are hoping to be able to bring Jack home (I write this with tears streaming down my face, oh how I hope they can at least bring him home to be surrounded by family and his sister). Please keep them close to your heart as they navigate this heartbreak.
Well, tomorrow is a day that we have looked forward to for a long time. Patrick’s last 3F8 treatment. Two years of sharing pain, fear, joy, tears, exhaustion, heartbreak, and just about every other emotion you can name with some of the most caring, intelligent, loving, and patient people I have ever known. I wish there was a way that I could adequately express my gratitude to the doctors and nurses on the 9th floor of Memorial Sloan Kettering Cancer Center… the only way I know how is to periodically stop by with a cancer survivor to say thanks and spread hope. 3F8 saved Patrick’s life, and I look forward to the day when all children with cancer have an answer that includes the word “cured.”
Tomorrow’s agenda: 3F8 and 30306
Erin
we will not know that for sure without further testing. We are deeply saddened, but gearing up for another full attack on the beast neuroblastoma. We have not told the children and don’t plan to do so until we cannot keep it from them any longer. Patrick will have another MIBG scan tomorrow, and we will meet with Dr. Katzenstein afterwards. We are trying to schedule CT and MRI scans and likely bone marrows and a lumbar puncture so that we can determine exactly the extent of his disease. I will keep everyone posted as we receive the news.