Dylan was discharged from hospital today, YEAH! We need to go to Frankston hospital tomorrow and Monday for his antibiotics to be administered via his hickman line. Tuesday he is scheduled for his bone marrow aspirate and we get to bombard his doctor with our wealth of information and questions that we have gathered since we got the news that the NB remains in his bone marrow. Anthony Rocca from Collingwood football team came in today to see the 6 East kids, but Dylan forgot to get his autograph, what a shame…not. Carn the Tigers! Tim went to the “Challenge” father’s day out today, to play golf and go ten pin bowling. He came back saying what a fantastic time he had and how rewarding it was to have met two wonderful fathers of Neuroblastoma children. Dave and Derek both had boys the same age as Dylan but unfortunately they both became angels earlier this year, one after an 18 month battle and the other after 6 months. We were both heartbroken to hear of their loss. Derek and Dave both told Tim, not to ever give up and that even though they had lost their boys, some do survive and Dylan may be one of them. They both gave Tim their numbers and offered their support and friendship. Ironically they both live 10-15mins away from us in different suburbs. Tim was so happy to have met them and glad they shared their experiences with him. We were going to the “Make a wish” Xmas party tomorrow, but we are all so tired and Dylan decided that after the hospital trip for his antibiotics, we will come home and put up the Xmas tree and the Xmas lights on the house. I also heard that Dylan’s teacher may pay him a visit, and I know Dylan would much prefer to see her, than see yet another man dressed up in a Santa suit!
I write with great sadness that a Neuroblastoma child that we had met, got his wings. His name was James and he was aged 20 months. His mother did not speak English so I did not get to know her well, but I knew it was NB as we had a bed next to her son for a few weeks and I had overheard the interpreters. The cot was always filled with toys and the father spent every night with him, while the mother spent every day by his side. We were not on 6 East when he went, I was told the news today that he was put into isolation, 3 weeks ago, and passed. That leaves 5 of us being treated for NB at our hospital and Dylan is now the only boy and the oldest.
To those of you who do not get a chance to visit our site to often, please go back into the history link and see previous entries. Sometimes I do not have internet access but I still write a journal, and enter a few on the same day with different dates, therefore they do not get displayed on this page, but instead go straight into the history.