I have been in this limbo land lately. While I am constantly thinking about Nathan’s condition I haven’t had to really immerse myself into it and have been able to go about my daily business as a mom.
I am starting to get antsy now. Nathan’s platelets are dropping and his doctor swears that the chemo he is on is very unlikely to be causing the problem. I have reached out to the wonderful Neuroblastoma Family and have found one other child who had this happen while only on this chemo (irinotecan). So – I don’t know if it is the chemo or his bone marrow starting to give out from all his years of treatment or from tumor in his bone marrow taking over.
Since we have been doing this chemo we get to feel like we are doing “something”. Luke and I are not at a place where we feel we can stop treatment. We are very conscious of how the treatment effects Nathan and we have promised ourselves we will not put him through anything harsh anymore. It is clear his body cannot handle any chemo.
There are several parents on the Neuroblastoma listserv who are physicians and a few other who are very knowledgeable and they have started taking matters into their own hands. They are attending conferences for neuroblastoma researchers and some have significantly funded research. I have been contacted by these parents (and have met most of them) and have heard their ideas for possible treatments for Nathan. These are things that have shown promise in the lab. I am not sure how I would even go about getting some of these things for Nathan.
I just don’t know if perhaps we should be trying to do more for Nathan. He still feels SO good. He does normal activities and it is so hard to just know we are letting the disease take him. We have fought this for almost four years. We have tried many experimental treatments. We have gone further than some would be willing to go. However – there are those out there willing to go further and we have witnessed it. How do we live with our decisions from here on out. How do we decide what measures are worth doing to buy more time? We have said in the past that we won’t to anything that won’t buy us at least as much good time as time spent in treatment, but we can only guess about that.
I can’t say we wasted our time spending three months in New York last fall but if hindsight were 20/20 no WAY would we have done it. We were told the treatment could be curative. We were told it would be unlikely Nathan’s counts would drop and even more unlikely he would need stem cells. We figured we could go back and forth between Colorado and New York for treatment. We learned a big lesson about clinical trials. They are Experimental!! Nathan was the first child enrolled on the study and so instead of 10 days in New York he spent 3 months. He spent 6 weeks in the hospital and had ZERO neutrophils for over 6 weeks and almost daily transfusions. I could go on about the horrible nose bleeds and high blood pressure. Then there is the fact that Nathan’s disease is far worse after all this. That is the hard part to take.
We definitely made the best decision given the facts but we did get burned and we are afraid to get burned again.
So – I am feeling fairly helpless right now and it is a bad feeling when it is my child’s life I am dealing with. I have been in a similar place before and I think that something will shift soon and it will be made apparent to us what we need to do next. I have a feeling it won’t be a good thing when it happens but if it makes it clear what the best thing is for Nathan I will feel better.