Meeting with Dylan's doctor

Dylan had his 3rd bilateral (two samples) bone marrow aspirate today under anesthetic. He refuses the mask to go under with, I think it makes him feel like he is suffocating, so he had a needle in his hand and that made him cry. All went well though, he pulled through fine and is back home tonight as happy as punch. Tim and I saw the doctor while Rose looked after Dylan for us in recovery. We asked him a thousand questions and have a better understanding now…I think. I still get so confused but will try and relay it in this journal entry as best as I can. He told us that Dylan’s major tumor on the adrenal gland was wrapped around major arteries and therefore is still in-operable. He will meet Wednesday week with the surgeon and radiation doctor to discuss Dylan’s case and work out a plan of treatment. The doctor explained that surgery and radiation was not totally up to him and that the surgeons must work out the pros and cons of doing a partial resection. If the risks are too high for complications they will not do it. Also they may decide that radiation treatment may be better used before surgery, that’s if surgery is decided as a possible option. Basically in a nut shell the doctor said that he cannot predict the future and that this is such a complex cancer that things can change in any direction. The Chemo that Dylan has already undergone has shrunk the tumors but the shrinkage means that it has destroyed some cells and the remaining cells are resistant to the chemo already used. We can try other chemo agents but the ones already used were “the big guns” so to speak. He mentioned that the mouse antibodies will be available here from America in the next few months as a trial. The doctor also said that harvesting stem cells even though still carrying disease is an option he would consider if we wanted to do so in order to buy time. Dylan continues to have multiple tumors in his legs, arms, ribs, skull, spine and stomach and they are only the ones they can see via scans, there are most probably cells in other parts that we cannot detect. Using a bone marrow donor is not an option for NB cases, I am still a little confused about this however what he said at the time made sense and I sort of understand that it would not free him from disease. If the scan he had today comes back positive with disease then Dylan will be classed as refractory, meaning no longer responds to chemotherapy agents and his chances of survival will be less than 10Dylan’s initial bone marrow aspirate was tested NMYC – amplification and came back as negative. This is a good thing but that does not mean that the tumors themselves are not amplified as these have not been tested, as no biopsy has been taken. I can’t remember what NMYC amplification means but I know it is something to do with the cells copying themselves…I think. In discussing the NB cancer itself, he mentioned that there is a girl he has been treating for the past 3 years at our hospital and she is 17 years old and still has NB present. The oldest case he has dealt with was in a 33 year old man. It still shocks me to hear that it is found in adults too. I expressed our concerns about waiting for Dylan to be NED (No evidence of disease) before we go on his “Make a wish” trip, so that he could have his tubes removed from his body and be less concerned about damaging them. I am concerned that this is the window of opportunity while he is well and full of energy and that if we start more treatment that he may become unwell or worse. The doctor agreed and said to wait until our next appointment Thursday week, after he has had a chance to meet and discuss his case. He said that depending on his results, he may give him clearance to travel and we can have our week away with the boys and then start whatever path we go down after his trip. Unfortunately this will mean going to Queensland during peak season and during the hot weather. The doctor also said that Dylan is pain free and happy at the moment and he is pleased that the treatment so far has done that, he said that some patients do not even get that far. We just have to pray now that this aspirate comes back clear and we can continue his protocol of treatment. If not, then we will try clinical trials. Most of the drugs used on other NB cases that I have read about on the internet such as Topotecan, are available here and he said that we can try them if we wish to do so. I am still trying to get in contact with Dr Holt in Perth and have started the ball rolling with natural therapies as well.