Tuesday, June 28, 2005
Dylan started his 10th round of chemo yesterday of Irinotecan & Temozolomide. He did really well with just one vomiting session. The only thing that has me concerned is that his neutrophils were only 0.5 which it borderline neutropenic (meaning no immune system). This increases his chances of another fever and another hospitalization. But I must remain as positive as I can and fingers crossed we are not in hospital on the 4th of July weekend or we will miss the big fireworks display. I met some Neuroblastoma parents that I have been chatting to online for quite sometime before we left Australia. It is amazing to put a face to the name and meet these very brave and inspiration children. We met up with Christi Thomas, Carolyn Coveney and Erin Whepley. All have great stories. Carolyn is now NED (remission), Christi has been living with NB for a long time and has just started ABT-751 which is proving very promising after she has exhausted many other treatments and Erin, well, Erin is the most inspiration for me. When we were told that Dylan was classed as refractory and that there was little more that could be done for him, it was Erin’s mom who filled me with hope and determination and to this day I still carry that email with me. Erin had the almost identical case as Dylan and after hearing what MSKCC did for her and what they had to offer, is when I made the decision to not sit at home and watch Dylan die, but to get him to New York despite all barriers. If you have time, please visit Erin’s website as it is only very new and has little guest book entries.Today’s chemo went well apart from more vomiting, as we were walking back to the Ronald McDonald House, Dylan seemed a bit down in the dumps. When we arrived in the Lobby, I checked the mail and saw that there was a package for Dylan. Once up stairs Dylan became very enthusiastic about opening the box and as you can see by the photo, Dylan was most excited about his special gifts. Thank you very much to an exceptional man back home in Australia who not only has donated generously to Dylan’s fund but also sent Dylan all these Playstation games! I also need to thank another very special lady who gave my brother some money to bring over specifically for Dylan to spend on something he really wanted, which was a Playstation console. So now Dylan is completely set up, he has wanted a Playstation ever since we arrived in New York in January, and now thanks, once again, to the generosity of some amazing people, he is over the moon and bursting at the seams with excitement! It also means I get to catch up on some “me” time, while Dylan is entertained by the Playstation. I just cannot get over what everyone has done and is doing for us. I get so frustrated in a way, because I just can’t express my gratitude enough. I want everyone to know that our whole family would be a mess without each and everyone of you wonderful people out there, you really have overwhelmed us and we are eternally grateful. I never realized how many good people there are in the world until now. Another family in America who has been through the whole cancer thing with their beautiful boy is also doing fantastic things for us, and sending us essential items for everyday living as well as giving us emotional support. I just burst into tears because I couldn’t get over how wonderful everyone is and she said to me that people did a lot for them when they went through this and now they want to do the same, and one day I too can return the kindness to another family. I found comfort in that, and I will definitely make sure that I will assist another family faced with this nightmare, when we get through all of this. Childhood cancer will be apart of my life now forever, regardless of Dylan’s outcome. I have become so close to so many families and their children and I can’t imagine life without them now.