Dylan started his first phase 1 clinical trial today, Protocol 05-074. Our day started at 7:30am in clinic and finished at 5pm. They accessed his medi port for the first time, and even though it was done successfully, Dylan screamed for a good 20 minutes. Next was the IV in his arm and again Dylan was miserable about it. He was given benadryl as a precautionary measure prior to the new drug, and he fell fast asleep. Dylan complained of a sore throat intermittently throughout the morning. The antibody Cetuximab was delivered first over a 1 hour IV, we then waited another hour, then he was given the chemo agent, Irinotecan. Blood tests were carried out throughout the treatment and Dylan has his very own special trial nurse. Dylan even got a visit from our Aussie friend Dean for part of the afternoon and they enjoyed a board game and good conversation. Then Dylan started his first official tutor session. His teacher will work with him every Monday, Wednesday and Friday from 3:30pm-5pm, either at hospital or at the Ronald McDonald House. By the evening Dylan was fine, eating well, playing with Joseph and Robert. Tomorrow, and for the rest of the week, Dylan will have Irinotecan over 1 hour each day. The report is not yet in from Saturday’s MIBG scan but from I could tell, it looked better than the last scan, with a few spots smaller and a few cleared spots from his skull. I really feel like we are moving forward, getting slowly closer to beating this cancer.
I was on a real high this morning knowing we had started an exciting new trial and feeling Dylan is improving, until I met with the financial department at MSKCC. He handed me the invoices for the past few months and I asked what our balance in Dylan’s fund was. I was told we have nothing left, we have exhausted all of our funds. Just in September for a 20 day admission it cost us $82,000. Ironically this clinical trial is no charge. We don’t pay for the new antibody Cetuximab or any of the blood tests, but we do have to pay for the registered chemo agent Irinotecan, the bed, nursing, pre medication drugs, transfusions and any other registered drug required to counteract the side effects such as Lomotil and Vistaril. I was told that we will need to make another deposit in November, but as far as I know there is only about $30,000 AUD left in the fund in Australia. I know MSKCC won’t cease treatment due to finances but when it comes time to renewing our visa’s in January we will need to prove once again that we can cover the costs of anticipated treatment at MSKCC or we will be deported. I am terrified, I have a sick feeling in the pit of my stomach. We can’t get this far, this close, just to loose it all. I can’t and won’t let it happen. We have start a new bigger and better media campaign to keep Dylan in New York. I don’t know how much we need to raise but at a guess at least over $200,000 U.S.
Then there is the upcoming issue of our house in Australia where Tim, Cain and my mother live. We have to apply to the bank again to allow us to pay half the mortgage repayments for the next 12 months as the agreement expires in December. If the bank do not allow us to continue to pay half our repayments then we will be forced to sell. As we stand currently, we will be lucky to break even, meaning we will be lucky to sell it for enough to pay back the loan. Also Tim and Cain’s flights have been booked by make-a-wish for 18th December for a month with us at Christmas time, and if we need to sell the house, Tim will not be there to organize to move everything, estate agents and find somewhere else for us to rent. Sorry this journal update has become about our financial issues, I hate writing about them, but today I am sick with worry, I am literally nauseas.
Thank you to everyone who sent a little note to Kelly via her guest book and the mail, today she received 6 letters and he mom said she lit up like a Christmas when she read them. Thank you to everyone for putting a smile on Kelly’s face today.