Sunday, May 29, 2005


Good news! Dylan made it out of the PICU today and was transferred back to the POU (Pediatric Observation Unit) affectionately known as “The poo” at MSKCC. Dylan has had no temperature at all since Saturday and his level of dopamine was reduced overnight to a minimal rate. Once at the POU his dopamine was turned off after a few hours and so far so good. The real test will be tonight when he is sleeping, so hopefully his blood pressure will remain fine. He is back to his old chatty self and happily playing computer games and watching television. This evening Dylan’s temporary central line was removed from his groin. Dylan found it most unpleasant and unfortunately the stitches were very tight, which caused problems for the nurses trying to remove them. In the end they removed the line leaving part of the stitches in his groin. Tomorrow the doctor will access the best way of removing them because tonight Dylan was too distressed about it all. If all goes well overnight with his blood pressure, he will be moved to the pediatric ward and the A-Line (Arterial Line) will be removed…more stitches to take out! The doctor said we will remain in hospital for approx 7-10 days to finish the course of antibiotics. Dylan was given nick names by the PICU nurses "Peanut" and "Koala". The nurses in the PICU are wonderful and real experts in their field, I can't thank them enough for seeing us through this scary time.

The money side of things is really worrying me. I know I shouldn’t stress out about it, I know I have so much else to worry about already. Since Thursday I estimate about $45,000 has been clocked up already. The ambulance each way was $5,500 so that’s $11,000, PICU was $8,000 per day so that’s 24,000, the POU is $4,000 per day, god only knows what it cost for the middle of the night trip to Urgent Care Centre on Thursday, plus medication, blood transfusion, doctors fees, x-ray & pathology costs. Then there’s another 7 – 10 days in the pediatric unit at $2,200 per day plus medication, pathology etc. We had $75,000 left in the MSKCC account, so now that will be almost gone at the end of this hospital stay. We will be lucky to have $10,000 left. On his trip back to MSKCC from the PICU, I explained to the doctor about our financial position and that if at all possible could Dylan be transferred via the tunnel instead of by ambulance. After he thought about it for a while, he told me it would be in Dylan’s best interest to go via ambulance because he was still attached to the dopamine and required constant monitoring. It’s so awful and embarrassing to have to negotiate Dylan’s care because of money. The worse thing is, our visa renewal is approaching soon and again I will have to provide proof of sufficient funds or we will be deported mid treatment. We have come so far since we arrived in New York, the surgery, stem cell harvests and chemo have all dramatically added time to Dylan’s life in order to battle his bone disease that is still present. We are only a month away from starting MIBG/Arsenic treatment which is unavailable in Australia and offers Dylan a 40hance of significantly reducing his disease in preparation for 3F8 monoclonal antibodies again which is unavailable in Australia. Without these options for Dylan, he will die, as there is nothing else back home that he can try. I can only hope we can get some celebrities to back up the campaign to generate more publicity particularly in New York, so that the fundraising continues.

I have just finished reading the guestbook. I am overwhelmed at the support from everyone over the past few days, it is truly amazing. I had no idea so many people from around the world were keeping a watchful eye on Dylan, it's like his own flock of guardian angels!