Saturday, February 19, 2005

Health department in Australia rejects Dylan's application for funding

A huge thank you, from the bottom of our hearts, to the LaManna family for their very generous donation. They sold a block of land in Rosebud yesterday for $139,000 and all of this will be donated to Dylan’s fund. Without this donation, Dylan’s treatment in the U.S would stop in the coming months due to a lack of funds. The funds so far have paid for Dylan’s tests, surgery, ICU care, hospitalization, medication and chemotherapy. Dylan still has another round of chemotherapy to go before we can re-evaluate his condition. Hopefully the chemotherapy he is having now, will work as anticipated, and then Dylan can start on 3F8 treatment. I have been told by some parents here, that 3F8 monoclonal antibody treatment can take anywhere from 5 months to 2 years! So continued fundraising is vital to continue Dylan’s fight for life. One good thing about the 3F8 is that the children have a good quality of life during this treatment, compared to the agonizing effects of chemotherapy.

I really shouldn’t write this next entry, as it will just make me really angry and I could go on about it for ages. I will try and keep it brief, without the numerous comparisons of ridiculous amounts of tax payers money, the government spends on things. Tim received an official reply from the government a few days ago in regards to our request for funding. Their reply was that they would not be able to provide any financial assistance for Dylan’s treatment in the U.S. Their reason was that Dylan only met two of the four criteria’s that are required for them to approve the application. One was that the chance of a successful out come must be high, and Dylan’s chances are low…what do they expect? Dylan has cancer, there is no cure for cancer! The second reason is because 3F8 monoclonal antibody treatment is experimental…the point is that treatment for Neuroblastoma is unsatisfactory and clinical trials are considered a standard form of practice for this disease. 3F8 has been used since the 1980’s (see MSKCC website). At MSKCC there are 7 clinical trials currently running for Neuroblastoma. When Dylan was in Australia, there were no Neuroblastoma clinical trials available, to be offered to us. MSKCC has become world renown for their Neuroblastoma research due to their high success rates for their patients. Every person I meet here, tells me a story of a child who was told by other hospitals that there was no hope and they were going to die, then they get treatment at MSKCC and they are not only still alive, but they are in remission. Obviously MSKCC still loose patients and not every child with Neuroblastoma treated at MSKCC survive, but they have a better chance than anywhere else in the world, and Dylan deserves that chance. In the letter from the government, they neglected to mention the surgery that Dylan could not have in Australia, that he has now had in America and that it was a complete success, with the removal of his ENTIRE abdominal tumor from around his renal arteries and the saving of his left kidney. For someone with a low chance of success, he is doing pretty damn good so far! All I can do is thank god for the generosity and kindness of the people that have donated and supported Dylan’s fund, at least I can rely on them to give Dylan a much deserved chance to live.

Dylan is improving each day now. His G-tube (feeding tube) is not leaking as much and I am dressing it daily. Dr LaQuaglia said to not use it for a week and let it heal, so they will start Dylan in TPN, which is intravenous feeding. His diarrhea is getting better and he is now having Imodium to control it. His temperature has been up and down, and has been down for most of the day but came back at 10pm to 38.4. The pain factor is now being controlled with Codine and he only complains about stomach pain which I think is associated with the G-tube. Every now and then he complains about the surgical site but it’s not very often. I don’t notice any symptoms of the pneumonia so I assume it’s getting better. Unfortunately Dylan developed a severe rash this evening. It is all over his back, chest, neck and legs. It is extremely itchy and hot and angry. The doctor said it is likely due to one of the many new drugs Dylan is on and they have given Dylan IV Benadryl. Poor little guy. The doctor said that the chances of Dylan getting discharged anytime soon are slim. Dylan needs to have no fever and his G-tube needs to have stopped weeping, and of course no more diarrhea. Of course by the end of this week, Dylan’s counts will drop due to the chemo and he will be neutropenic. The chances of him getting another fever during neutropenic are high and that will mean more hospitalization and antibiotics. All this hospitalization costs a fortune and it concerns me, but what can I do? On the up side, the good thing is that at MSKCC they send a lot of their patient’s home on IV treatment, providing they are stable. So for example, if Dylan has no temperature, no diarrhea, no rash, no leaking G-tube and his vital signs are good, he can have the remainder of his IV antibiotics, fluids and TPN (IV feeds) at home, or in our case at McDonald house. A nurse visits the home each day as required and this is a less expensive form of treatment than being hospitalized the whole time.

Dylan did very well for the stem cell harvesting prior to surgery. He needed to have million stem cells and Dr Modak was doubtful that this could be achieved as the best time for collection is when the counts come up after a round of chemo. Dr Modak said we will most likely have to have several attempts to get the amount required. But Dylan did it! Over the two days prior to surgery he had 7 million stem cells which have now been stored ready for the future treatment that will involve a stem cell rescue at some stage. This is fantastic as not only has Dylan saved additional costs of attempts, but it means that he will not need a donor which in itself has risks such as potential rejection. In Australia, stem cell harvest was not offered to us due to his condition, but Dr Modak had no hesitations and requested it be done straight away.

Many people have asked me, what happens to other children in Australia that have Neuroblastoma, that are not having the treatment that Dylan is having in New York. The children that I have met in Australia with Neuroblastoma, have all made it to surgery at some stage and had stem cell rescues. Some of these children are still living with Neuroblastoma and continuing chemo and radiation, others made it to remission, and others are now angels. But in Dylan’s situation, he never made it to surgery nor did he ever make it to a stem cell harvest, and I was told that continuing would be pointless. I was told that they would not do it due to his bone marrow status and that if I wanted surgery and stem cells done, I would need to go overseas. I think the view of Dylan’s doctor in Australia was that it would be a waste of time as they have nothing more to offer to try and get the Neuroblastoma out of his bones, where as at MSKCC they have several treatments to choose from, that are exclusive to MSKCC. MSKCC have now done both the surgery and the stem cell harvest and we are now tackling the disease in the bone.