Dylan’s platelets were 25 today, but we are still holding off on transfusing. His red blood cells were fine 98 and his ANC (Absolute neutrophil count) was high enough to not need another shot of GCSF. TPN bloods were drawn and we will return to clinic on Wednesday. I saw Dr Kramer today and without going into too much detail, she told me that Dylan’s MIBG scan results show that he is stable. That means there are no new areas affected and that the existing areas remain unchanged. So now preparations will begin for Phase II clinical trial of MIBG & Arsenic trioxide treatment Dylan will need an anesthetic for bone marrow aspirations and he will need medication to protect his thyroid from the treatment. I have no dates yet but Dr Kramer said he will most likely start treatment in the first week of June. She said they go in on a Wednesday for the injection of MIBG (IV radiation) and are then isolated until Saturday if all goes to plan. Dylan will need a urinary catheter in place as the MIBG cannot sit in the bladder and needs to drain out immediately to prevent any damage. Anything that goes into the room with Dylan, like pajamas & toys, will need to be destroyed as they will be contaminated. I myself will only be allowed in with Dylan for 10 minutes every hour. Dr Modak told me that Dylan will have a 40hance of being successful because Dylan’s Neuroblastoma takes up MIBG well during scans which means he has a better chance of the higher doses of MIBG destroying the cells. After the MIBG treatment is done, Dylan will have arsenic trioxide which will be administered IV everyday for 2 weeks excluding the weekend. They will need to monitor his potassium, magnesium and blood pressure. Arsenic trioxide is believed to work by releasing cancer cells from a prolonged state of immaturity, allowing them to partially mature and then die. This drug is less toxic then standard chemotherapies. At some point after this whole treatment, Dylan will need a stem cell rescue and have the stem cells that were harvested before surgery, given back to him. The worse part of this treatment is that Dylan will not have another scan until 6 weeks after the first day of MIBG treatment, so we have to wait until then to see if it worked. I am having mixed feelings, one minute I truly believe this is going to work and then we can move onto the 3F8 treatment, then I get sick feeling in my stomach that what if it doesn’t work, what then? I have been too afraid to ask, and I guess I will cross that bridge if we come to it. One day at a time, I must remember that. I just have to read the Mother’s day card I received from Cain, it said…
Happy Mother’s day. You’re a great mum, you’ve done everything you can do. And I do understand why I had to go. DO NOT GIVE UP ON DYLAN!
Lots of love from everybody xoxo
It was written just as I have written with the “do not give up on Dylan” in capital letters. Cain, I never will sweetheart, I am going to do my very best to bring your little brother home to you cancer free one day, so that you can be as you once were. The bracelet you sent me with “I love you mum” written on it will stay on my wrist forever and I look at it each and everyday and think of you. I wish I could have hugged and kissed you to thank you for your beautiful words and special gift.
I sat with Dylan and explained about what will happen in a few weeks and told him about the isolation and catheter. He just looked at me with a blank expression and said “Yeah that’s o.k I can deal with it!” He is so incredible! What a champion! I’m like, “so you’re not worried about having a straw in your doodle?” and Dylan says “Nah, then I don’t have to buzz the nurse when I need to pee!” The TPN is working wonders with his energy levels, he’s walking everywhere now, bathing and dressing himself too. He sits up at the computer and listens to his music with the head phones on, singing away and having me in fits of laughter. He hasn’t done that in ages.