Dylan was very good this morning. He woke up at 6:30am and drank his CT contrast mixed with Sprite, but when he was almost finished by 7:30am he brought it all up and didn’t even make it to the bucket. He was so upset but I explained he did really well and it would still be o.k. The scan went well and he was his usual brave self. Tomorrow he will have his MIBG scan which is the hardest for him as he needs to lay perfectly still for an hour, then he will possibly have some transfusions followed by his bone marrow biopsy under anesthetic. This afternoon Paul picked us up and we met up with Chris and his wife, Justine for a game of mini golf, I also had the wonderful opportunity to meet with Paul’s wife, Diana. Just for the record, Justine made it on Dylan’s chicky babe list from the moment he laid eyes on her!
As I live with such excitement and joy over what has happened in the last few days with Team Continuum, I also live with the roller coaster ride of what is happening in the lives of the rest of my family, my family here at the Ronald McDonald House. There is a family here from Hong Kong, who also traveled here with their 7 year old son Kevin, who also has Neuroblastoma. Kevin has been here for quite a few months and finally got to the point where he can start 3F8 antibodies. Kevin’s Neuroblastoma remains on the inside of his aorta that is in operable and the chemo and radiation has done all it can to reduce the cells remaining. In the hope that 3F8 may clear the remainder of disease, he started 3F8 on Monday last week. He complained of pain all week, but as 3F8 causes enormous bouts of pain, it was assumed that it was the 3F8’s causing it. By the weekend he developed a fever and his stomach swelled up. Scans have revealed that he has a hole in his bowels and he has now become septic. His mother has been told today that because of all the chemo and radiation, he may not recover from this and has been put on a ventilator. I spent this evening crying with her as I know that through all of this, they can be well one day and things can take a turn for the worse the next, without warning. Neuroblastoma is so aggressive that the treatments have to be just as aggressive and everyday we all have to live with the possibilities that the treatments themselves can take an irreversible toll on our children’s bodies. I am not a very religious person as many of you know, but I will be praying for Kevin tonight and I would like to ask all of you to say a prayer for Kevin too. I can relate so much to this family as they too are many miles from home in the hope of giving their son the best chance of beating this monster.
