Saturday, July 22, 2006

Back at RMDH after MIBG therapy

Dylan is back at the Ronald McDonald house and all is fine. The MIBG therapy went really well, no reactions or side effects at all. Two very heavy and tall lead screens were placed beside and in front of Dylan’s bed and I had a monitor to detect how much radiation I was exposed to. The actual MIBG infusion only lasted 1 hour and 15 minutes. Each day, radiation safety came in and did a reading on Dylan’s radiation levels with a hand held machine (can’t remember the name of it). The only issue that upset Dylan was the foley (urinary catheter) that was required so that the MIBG would not sit in his bladder for any length of time and risk any damage, as you can imagine it is not a nice thing to have. Dylan was happily distracted by the television and playstation during the admission. We were also able to catch up with several nurses who we had not seen for many months, whom we had made good friends with during the many admissions last year. I am collecting blood from Dylan at a certain time each day over the weekend ready for testing on Monday. It is anticipated that Dylan’s counts will drop in the coming week and it is likely he will require multiple blood and platelet transfusions. The next phase of this therapy is the Arsenic treatment which will commence on Monday and continue daily (Mon-Fri) for 2 weeks, starting with an EKG (heart test) electrolytes blood test and then the arsenic infusion. Dylan will be on a heart monitor for the duration of every infusion. Dr Modak told me that out of the 15 children who have already had the arsenic treatment, none of them had any heart problems and it is only a precautionary measure, however some children did display problems with their potassium and magnesium levels. Dylan already has issues with these levels, so infusions of potassium and magnesium are likely. As scary as the word "Arsenic" sounds, this drug is actually less toxic than standard chemotherapies. Arsenic Trioxide is believed to work by releasing cancer cells from a prolonged state of immaturity, allowing them to partially mature and then die. Monday will also involve a scan for research purposes as part of the trial. When Dylan is on a clinical trial we are not charged for research scans, blood tests or the actual trial drug, but we are charged for complimentary drugs needed, doctors visits, transfusions, hospital beds, nursing staff etc. Dylan will have an MIBG scan to assess the outcome of this treatment in approx 4 weeks time, after that, the plan is to start chemotherapy followed by a stem cell rescue a few weeks later. Then if all goes to plan he will then start the “hot 3F8” trial.

We had a bit of a drama before Dylan was admitted to hospital on Tuesday, we discovered that our fish (Aussie) had gone to fish heaven. We had “Aussie” the Siamese fighting fish (Beta) for almost a year. So this afternoon, I went to the pet shop and bought Dylan a new pet fish, Dylan named him “Vinnie”. Dylan has been talking to him intermittently all night, telling him things like “your number 1 fish Vinnie!”

Thank you again to everyone for your guest book entries, I do read them all and I read them to Dylan after I tuck him in bed for the night. I have also received a lot of emails, and I am slowly working my way through the replies, sorry for the delay everyone.

I just found out that there was a problem with the link for “Operation Oz Kids” on Dylan’s fund raising page, this has now been fixed.