Xmas eve was a very hard day for us. I spent the day attending a funeral for a little 10 year old boy who was a patient on 6 East. His mother and her older son had nobody to go to the viewing with, so myself and another 6 East mum went with her. The family was from South Africa, so relatives could not attend, nor could his father. At the viewing, he laid there very peaceful, but as I cried, I felt that it was only his shell that we were looking at, and his soul had left. He was free from the awful pain and suffering that he had endured in hospital and was somewhere magical and safe. He wore his “Shrek” hat that we always saw him in at hospital and he had plenty of toys with him for the journey. An hour later we went to the burial and I saw the children’s section for the first time. It was enormously difficult for me to see all the graves and but the hardest, was the grave of little James who had died from Neuroblastoma on the 27th October this year. We had been in hospital with James on a few occasions, but as his parents did not speak English we did not get to know them well. James’s mother was there and she recognized me, she was hysterical with grief and rushed over to hug me and say “that my son” pointing to the grave. I held her and cried also and told her that her son had the same cancer as my son. She looked at me with wide eyes and just said “No”. She was horrified to learn that Dylan has the same thing. She held onto me during the whole ceremony. The priest from the hospital conducted the ceremony and we released balloons, read his favorite story and lit candles…it was a beautiful ceremony. Afterwards I had his mother in one arm and James’s mother in the other, all crying and consoling each other. Seeing those mother in so much pain over the loss of their babies was heart wrenching. I just kept saying to myself, this is not fair, it's not right, why is the world so cruel, no one should ever have to bury their child. This is my world now, seeing children sick and dying, while I live with the fear that my own son may die too. I can't let this happen to our family, I must fight, Dylan will be a miracle, and he will make it to New York!
I dropped off one of the parents to Ronald McDonald House after the funeral and I received a phone call from my best friend, who told me that her daughter was in Emergency at the Children’s hospital. I parked the car and rushed across the road, to be by her side. Her little girl had a temperature and was vomiting, the doctors said it was gastro and admitted her into the short stay unit over night, on a drip. Tim then called me telling me that Dylan was very flat, and he was bringing him in! Dylan arrived at about 6pm for blood and platelet transfusions. The doctor in emergency showed me the letter that had been sent to Sloan Kettering this morning, it said that Dylan's tumor was wrapped around both the left and right renal arteries and that it was 9cm, 5.3cm, 6cm. The rest was too hard for me to understand, but it said something about the tumor had moved things in his body around. We crossed our fingers that he would not develop a temperature, and our Xmas wish was granted, as we were discharged at 2am. We finally got home by 3am, just in time for Santa. Cain woke up at 6am, and Dylan slept until 9:30am. The kids played all day, very happily with their presents, while Tim and I were exhausted from the previous day’s events. The transfusions last night, did the world of good for Dylan. It meant that he was able to enjoy Xmas day and have enough energy to play with his presents.
My best friend’s daughter spent the night in hospital and is still there this evening but has still not been taken up to a ward. She said that emergency was very busy today, but at least she was given a nice Xmas lunch and her daughter received 5 presents plus a personal visit from Santa.
Dylan has not appeared on the Australia Post website yet, I assume those involved in updating the website were unavailable over the Xmas period, but I am sure it will be up by the end of next week. I will let you all know when it is up and running. We have received more cheques and lovely letters, but have not got the official total since Thursday, which was at $63,000. A fund has been opened at the Bendigo Bank where direct deposits can be made. Everything has just happened so fast!
We saw Dr Heath on Thursday who had put Dylan’s scans on CD to send to Sloan Kettering, and he said he will do no further treatment for Dylan until he hears from Sloan Kettering first. We only have one more thing to try in Australia, which is Topo/Cyclo, but if we use it now, Dylan will have nothing to attempt if he relapses in the future, so it would be better to hold off if we can. Sloan Kettering may want Dylan to receive the mouse antibodies instead, prior to surgery. This all depends on how fast we can raise the money to get us over there as Dylan's condition gets worse and more dangerous each day.
We hope everyone had a safe and happy Xmas day!
Love & Hope from The Hartung Family xoxo