It’s another hot day in New York, I am so not a summer person. As soon as Dylan woke up this morning, the first thing he said was “I wish you me , daddy and Cain could all go for a picnic together today” I said “I know, but we can’t at the moment because Daddy and Cain are so far away” Dylan replied “I know, why did I have to get cancer?” What could I say? I just told Dylan that we don’t know why you have cancer, but sometimes these things just happen, we just have to be thankful that we made it to New York to get you the best treatment available for your cancer, and we have the best doctors in the world making you better. Dylan’s blood counts are great apart from his platelets at 35 but no transfusion is necessary. The 10th round of Irinotecan chemo is scheduled for Monday for 5 days. The team meets today and they will discuss whether they should attentively book Dylan in for MIBG treatment at CHOP in Philadelphia just in case the MIBG treatment scheduled for mid July at MSKCC falls through. If we get on CHOP’s waiting list now, it can always be cancelled if MSKCC gets the all clear from the FDA. I really don’t want to have to travel by train to Philadelphia, stay at the Ronald McDonald House there, arrange financial wire transfers from Australia etc, but if we have to we will. It would hopefully only be for a few days during the treatment and then we will return straight back to the care at MSKCC and our room at Ronald in New York. I found out today Dylan’s LDH is 195. The normal range for Dylan is 60-200. I don’t exactly understand what it is but I know it is used to measure a variety of things, one of which is tumor activity in Neuroblastoma children. If Dylan’s LDH jumped from 195 to say 1200 it would indicate rapid cancer growth. So at 195, we are happy and want to keep it that way or lower. My brother and my 10 year old nephew are coming to stay with us on Tuesday 14th June for 11 days. We are so excited. They had been saving and planning a trip to Egypt for the past year but now that we have ended up in New York, they decided to change their plans and see us instead. After they leave New York they will go to Disneyland for a few days then head back to Australia. Unfortunately even if Dylan and I could afford Disneyland we cannot go. The last hospital scare is a pure example. Dylan was as well as he has even been but still ended up in ICU very unexpectedly. If we were in another state we could not get back to hospital in a safe enough time nor would we have the funds to be seen at another hospital. But Lynn and Greg will most likely take us to a place within driving distance close which is supposed to be a great fun park.
I got a bit down in the dumps last night, it always happens when I start to read other web pages. I was reading about Jamie (Beebo) who is close to gaining his angel wings. His mother wrote, “how do I tell a 5 year old he is going to die and I can’t stop it”. I have wondered that myself, if the time ever came, I have always been honest with Dylan about his condition but I don’t think I could ever tell him when his time is close. I know I should never think about these things but as a parent you can’t help it. I have spoken to other parents and they tell me they too have thoughts about their child’s funeral and what they will do. I have figured that this is a natural thought process that every parent experiences at some point through this journey, and even though we all know we should remain positive and believe they will make it through, we just can’t help those thoughts sneaking in sometimes. For me it’s hard when I know children with Neuroblastoma who are not doing so well. At the moment little Ryan has come to the point of little options, Ryan has been fighting since he was 5 weeks old! On a brighter note I found Destiny who had Neuroblastoma at the age of 3, was in remission for 5 years, relapsed and told by doctors she had no chance of beating it a second time, but here she is 9 years in remission post relapse, 18 years old and still in remission! Neuroblastoma is such a complex cancer, it is so random in it’s individual responses to treatments. Not even the doctors themselves know who will beat the beast. Ryan had great odds being 5 weeks old, he had all the favorable histology and now he is almost 3 years old and almost out of options, and then Destiny was told she had no chance after relapse, and she has beaten all the odds, then there is Erik who had Neuroblastoma at the age of 6 and has been in remission for 13 years but now has relapsed. I bet if you ask Erik if the 13 years in remission was worth it ,he would say “yes” because he has gone to college and is now preparing his wedding to marry the women he loves. I want all that for Dylan too, I want him to go to school, fall in love and enjoy life but without the relapse part of course. This is the reason we all continue to fight, because none of us know who will make it and who will not, and I believe every child with Neuroblastoma deserves a chance at the best and latest treatments and trials available. As for Dylan, who knows? He might make it, he may not, but what I do know is we have to keep trying, keep believing and keep fighting with all our might, because Dylan is worth it.
