Another bump in the road for Dylan. Today at clinic I was informed that MIBG treatment at MSKCC is temporarily suspended until further notice! Apparently it has nothing to do with the treatment itself, it’s a political issue, someone didn’t cross their T’s and dot their I’s. We won’t know when it will be available until MSKCC meets with the FDA (U.S. Food and Drug Administration ) on Monday and the doctors meet on Wednesday. It could be resolved in a week or it could take months. So what does this mean for Dylan? Well they have scheduled him in for another round of Irinotecan and Temozolomide on Monday for 5 days. Even though this chemo is not decreasing his disease, it is holding it stable, and preventing new areas being affected. I asked whether it was worth going to CHOP in Philadelphia for MIBG treatment but they explained the waiting list there is 2-3 months and the protocol is slightly different to MSKCC. Whether the protocol is better at MSKCC is unknown as it is a newish trial but as far as I know CHOP does not use MIBG in conjunction with Arsenic treatment ( I couldn't find anything on the CHOP website) and I was confident with the arsenic treatment in MSKCC’s trial because arsenic is derived from apricot kernels which is known for it’s cancer fighting properties. Dylan having this next round of chemo means it will disqualify him from the MIBG trial for a minimum of 4 weeks and he will also have to have his scans redone before he can commence the trial as part of the protocol. Fingers crossed that this issue is resolved within 4 weeks so that he can start MIBG by the end of June or early July. I am very disappointed and of course any delay in treatment means more time away from home and more time for the Neuroblastoma to live in Dylan’s body. At least we know that Irinotecan can keep it at bay…for now. Luckily Dylan’s TPN continues and can continue throughout this next round so that when the diarrhea problem rears it’s ugly head again, he will not loose weight as a result. Dylan’s blood counts today were fine, his platelets are 41, hemoglobin 88, ANC 2.8 & WBC 3.7. Dylan started a new drug to replace Bactrim today. Bactrim is given to prevent a specific type of pneumonia common with kids receiving chemo, and Dylan has been having it since July 2004. It is given twice a day for 3 days every week, but Bactrim also can lower blood counts. As Dylan has taken longer for his blood counts to rise than expected, Dr Kushner decided to switch from Bactrim to Pentamidine 67mg which is given I.V for 1 hour once every 2 weeks. Initially we need to have it 4 times the first week. The only bummer is it can affect blood sugar levels so Dylan had to have a finger stick done pre and post the I.V infusion. So that’s 3 finger sticks (including the one for his CBC-Complete Blood Count)in one day! Poor little guy, but he was so brave and chatted to the nurse the whole time with his now chubby cheeks and toothless smile! Dylan continues on Folic acid and Lomotil once a day and 12 hours of TPN at night.
On a happier note, This photo is of Dylan’s new buddy at Ronald McDonald House, you can see why he took to Taylor straight away! The resemblance is remarkable. Taylor is 9 years old and is Madison’s big brother. Maddy has Neuroblastoma also. They are from Louisiana which is down South! We spent the evening letting the kids play while Tanya, Aaron and I chatted, it was a great evening. Madison was scheduled to have surgery but due to her platelet levels it has been postponed and the family will have to remain at Ronald McDonald House for some time, Dylan's thrilled about that! He calls Taylor his pretend big brother while he is away from Cain. It is so great to see Dylan finally socialize. This is the first child he has interacted at Ronald McDonald House since being away from Cain. Dylan is looking and feeling 100even better than he was when Cain was here. The TPN (IV feeding) has done wonders for him. Dylan does not want to be apart from Taylor now, we had to pry them apart at midnight last night!
Dylan’s histories have become huge, so as with the guestbook, they have been split in half. If you would like to view any older journal entries, just scroll down to the last one and click on “view old journal entries”.