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August 20, 2006
By Margot | August 20, 2006
So now we take a deep breath and jump back into treatment. Dr. Maris thinks that the Fenretinide trial is still the best way to go. To qualify for the Fenretinide trial we need to do several scans – a CT chest/abdomen/pelvis,. an MRI or CT of brain, an Echocardiogram and ECG Bone marrow, with sample from bilateral aspirate sent to Dr.Seeger’s lab for immunocytology, a Urine HVA/VMA; vision testing, and a Chest x-ray. We are racing to set these up as soon as possible and if we can get them done quickly in San Diego, we’ll do them here so it’s easier on Sam. We have an appointment with Dr. Villablanca at Children’s LA (she is the head of the study) to get things started on Thursday of this week. We don’t want to delay at all. I wish we could just start giving it to him now.
The boys are doing fine. Sam and Andy are still loving Charlie and passing him back and forth like a hot potato. The place where Grandpa and Stephanie stayed had dogs and Andy told Grandpa yesterday before he left, “You have dogs but we have a baby. Babies are more powerful.” Charlie’s becoming a little more alert and stays awake for longer periods of time. We’re still not getting much sleep but to be honest I don’t think I’d be sleeping anyway and Charlie is more fun than the endless mystery novels I read to keep my mind off things in the middle of the night. We went to the park on Friday with Grandpa and played with the big bubble set and water frisbee that Aunt Ann and Uncle Don sent – thank you thank you. It was a beautiful day and it was nice to get out in the fresh air. Sam went to the Padres game yesterday with his Dad and Mimi and her Dad. They had a great time and came home and jumped in the pool. Andy stayed with me and Charlie all day and went swimming. He was in the pool almost all day. His little friend Rianna (our neighbor) is back from New York and Andy couldn’t wait to go show her his new Batman gloves that make sounds.
Neil and I are doing as well as can be. Sad and angry and terrified and optimistic. It’s hard to realize that we first saw this in April and we haven’t done anything about it yet. We just kept wanting to believe and none of the doctors seemed sure until now. It helps to keep busy and I know with all the scans and appointments coming up, that won’t be a problem. As my brother Paul, who lives in Australia now, put it, we just need to gear ourselves up “to take another whack at it.” I have to take everything I know about relapse and all the ugly statistics and lock them up in some back corner of my brain and not visit them and just move forward. We have a lot of things on our side. There is so much new research going on in Neuroblastoma that there will be a lot of new trials in the coming year or two and Neil has a line on every one of them. I am so thankful for him. There are also many kids who have done very well on Fenretinide and this trial is a new formulation with a higher dose.
Sammy is still feeling great and having a normal kid summer. His first day of school is on September 5th so we also need to get ready for that. Andy’s preschool starts again the following week.
Thanks to everyone for all the kind emails and for all your love and support.
Margot
Topics: Progress Reports | Comments Off on August 20, 2006
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