Yesterday I met with Dr Modak. The good news is that Dr Modak said he is confident that Dylan’s disease in the bone marrow is minimal and he said that 3F8 antibodies will have 80- 85 percent chance of clearing his marrow. The bad news is that we cannot use 3F8 yet. Dr Modak informed me that Dylan’s MIBG Scan has shown that there is advanced Neuroblastoma in the bones, including the right knee, left shoulder, lower spine, skull and multiple areas in the left hip. This is a separate issue to the bone marrow disease. The disease in the bones needs to be addressed before we use 3F8 antibodies. Dr Modak has advised that Dylan have surgery on Wednesday 9th as the first step of treatment, then 10 days later, after he has recovered, Dylan will need to have more chemotherapy in an attempt to reduce the disease in the bones. The chemo is Topo/Cyclo, one that Dylan has not had before. This chemo will need to be for 2 or 3 rounds with stem cell harvesting in between. After the 2nd or 3rd round, more tests will need to be done. If this has greatly reduced the bone disease, then we can have radiation and or MIBG treatment to clear up any remaining bones effected. Then we can start 3F8 treatment. Dr Modak did assure me that there are many things to continue to try.
This all means that the time spent in the U.S may extend to years…chemo for three rounds is at least 4 or 5 months, then radiation is another month at least, then 3F8 can take between 5 months to 2 years! This is so scary. Firstly there is the money aspect. Chemo was not anticipated, And with chemo comes lengthy hospital admissions for blood transfusions, platelet transfusions, antibiotics etc. This will mean an enormous cost. The other issue is the time spent away from Tim and Cain. I asked Dylan if he wanted to go through more chemo in America, that we would be here a long time and he will get very sick again. Dylan replied that he wanted to be with Dad and Cain, but he wants to get better too, so he will stay in America for more chemo. A possibility for us is to firstly have the surgery, then fly back to Australia after each chemo, for hospitalization. Then fly back to America for every chemo and test and most importantly the stem cell harvesting as Australia has told me in the past that they will not do it while Dylan has marrow disease. I think that MSKCC is not concerned about that because they have 3F8 to combat that issue down the track and also Dr Modak said that they can usually get disease free stem cells anyway. This will possibly work out cheaper to fly back and fourth and mean some time with Tim and Cain. This is a hard call for me to decide. So I have made up my mind to take each day as it comes because I do not know how Dylan’s condition will change from one day to the next. So surgery will be on Wednesday 9th, then 10 days later I will get MSKCC to give him his first dose of chemo, then I will re-access the situation again. At least I know that Dylan wants to continue still and he knows what he is in for, yet he is happy to do it. He really is so very brave.
We are staying with our friends at Port Washington at the moment. The house is great and they are amazing people. It started snowing before, at 11:30pm, and here we all were outside, playing and dancing in the snow. We even put Dylan and his new little friend in the toboggan! Snow is so magical, only Aussies would be dancing in the snow at 11:30pm in New York!