ALL DONE! Heading home first thing in the morning. We finished all of our tests. Thankfully, today went off without a hitch. However, Clayton has been clearly traumatized by the day before. When he had his Hickman, he was very possessive over his chest and would fuss whenever we took his shirt off, even if we were only changing his shirt. We finally seemed to have gotten him past that and then yesterday happened. Maybe the anxiety will pass quickly this time. One of the best parts of today was a family we met. We were in the playroom at the clinic and met a mother and her 13 year old daughter who has been fighting neuroblastoma for seven years! Her story is incredible. She was diagnosed at age six and is still a warrior which is unbelievably rare; typically the older the child is at diagnosis the worse the prognosis. She has relapsed twice and is on her third remission. Her success is a blessing given that her cancer was amplified with unfavorable histology. For those that don't know, neuroblastoma is either n-myc amplified or not amplified and has either a favorable histology or an unfavorable histology; amplified and unfavorable histology can be bad signs. Clayton is not amplified, but has an unfavorable histology; so good and bad. Anyway, this little girl was amazing...and very interested in Clayton. She asked me questions about him and I asked her questions about treatment. It was so nice to really get to talk to an older kid about stuff because Clayton doesn't talk at all and younger kids are only partially reliable (you don't meet a lot of older kids fighting neuroblastoma). So things I wonder about like, "how sore do you get from bone marrows and for how long?", things Clayton can't tell me, she was able to help me understand and that helps me help Clayton. It was just so nice to meet her because most kids who have been doing this as long as she has are in tough places right now or they have passed. So her story gives me more of a happy and hopeful rather than a scared, but hopeful. Oh, and they are from the New Orleans area. Such a pleasure to meet them. Not that we need it, but they also reaffirmed that we are in the right place. They started at New Orleans Children's then went to CHOP (#1 in the country for many peds cancers and rank at top for neuroblastoma along side MSKCC) and then came to MSKCC. MSKCC is their favorite and like us it is like coming home to them as far as treatment goes. It was interesting because the mom raved about CHOP, but still said she preferred MSKCC. We met another family from Sarasota, FL and that mom said something in a way I had not heard it put before. She was talking about how unhappy she was with her COG (Children's Oncology Group) hospital back home and how much she loved MSKCC. I've always said that private hospitals have more freedom with treatments, but she found a more effective way of putting it. She said that the COG hospitals have a protocols and they lump children into categories and treat by protocols where as MSKCC treats according to the child. So true. COG takes a one size fits all approach and MSKCC tailors and customizes and isn't scared to veer off course of their protocols. Their focus is on doing whatever is necessary to save a child's life ( and preserve the quality of life) and if protocols don't work then they try to find what does. Matthew is a perfect example. They are saving his life by doing what's necessary and not what some stupid handbook tells them they should. Thank God for people who realize that things are not always black and white and that there are times to throw the "rules"/protocols to the wind and forge their own path...a better path, one that makes a difference. I thank God for innovative technologies and innovative doctors. Getting off my soapbox...
We got multiple pieces of news today. First, he is HAMA positive. This means we will not be doing treatment for at least another five weeks and the nurse practitioner sounded as though she suspects it could be a few months before his HAMA levels are ready for treatment. Is this good or bad? Depends. You want your child to be able to do 3f8 because of its proven effectiveness, but you also want your child to eventually become HAMA positive (that is part of its purpose after it "trains" the white cells). Typically HAMA positive would be more welcomed after say six rounds or so. We have at least had two high dose treatments and have a year and a half left to fit in as many standard doses as his body will allow. The doctors do say that being HAMA positive can sometimes be a good sign of an active immune system. So we'll see. We retest again in four weeks. If he stays positive we won't go back to NYC until our nine month scans three months from now.
Second, I got a call from one of the doctors tonight and she said that his CT looked good (kidney, bladder and all) and that the official MIBG results were negative. So thus far, two out of three tests show no evidence of disease; just waiting on those bone marrows! Bone Marrows will probably take a week.
Home tomorrow!
No comments:
Post a Comment