What do we do? We saw Dr Heath today and I was told that he has scheduled Dylan to have another bone marrow aspiration next Tuesday if his blood counts are high enough. We were told that if the Neuroblastoma cells are still present in the result of that aspiration that we will be given a choice…To start a clinical trial or go home and let nature take its course. He said that the tumors everywhere else had decreased in size and there were no new ones, but that surgery would be a waste of time if we cannot get the NB out of the bone marrow. Getting a bone marrow donor was not an option, I think because he will still produce NB cells anyway. He basically said that he had already had an extra round of chemo and that more chemo would not help. He said that if it's not clear by now, it probably never would be under the normal chemo regime they use for NB. He also said that clinical trials have unpleasant side effects and will make quality of life hard and mean a lot of time in hospital. The doctor told me that a lot of parents choose to take their children home and treat the symptoms only and let them be happy and play at home and enjoy a quality of life for two to twelve months. How can I make such a decision? Do I continue him down the long road of being in hospital and go through the pain and suffering of the clinical trials or do I keep him home to enjoy the time he has left and watch him die? I know that there is no real answer and I know there is no cure. But I thought this would be a choice I would face when he relapsed, but now it seems we may not even make it that far. It was only July! I read so many stories of children fighting for years and I also read most are on clinical trials, some fighting for 5 years or more until it finally defeats them. I don't know how to make the choice when either way the outcome will most likely be the same, what if I make the wrong choice? If I don’t do the trials I will be forever wondering, but if I make him suffer for years and then…how can I forgive myself for putting him through that for nothing. He is too young to make a choice like that for himself, but I know he would choose not to die and not to be in hospital. He would choose to be well, he often talks about being well and says things like… “Mummy, when I am well, and when I go back to school…and Mummy when I am well, and I grow up, I will be a chef and make pancakes for Cain.”
It’s just not fair, he does not deserve to go through so much, his little life has only just begun and now he is faced with the end. I love him so much, how will I live without him? I don’t want him to go on his journey yet…he will be so scared and he will miss us all so much.