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.

6 responses to “Unsettled

  1. I am crying a river of tears for you right now, Susan. I’ve had a really bad case of bronchitis and have been having a hard time breathing.I’ve been thinking about Tonya and her cancer and Nathan and how sick he has been off and on for nearly 4 years.I don’t know how you do it every single day. I do know that you are doing a very good job managing his care and extending his life for as long as you have. What if you weren’t Nathan’s mother. What if Nathan was in a 3rd world country.You are a wonderful person and should feel very good about how effectively and proactively that you and Luke have been handling everything for Nathan. I probably can’t attend, but you better send me an invite to his birthday.We love you.- Kate

  2. Echo what Kate said. Don’t ever even for a second doubt that you haven’t done enough for Nathan. You can would have should have could have the last four years, but the point is you and Luke tried something and Nathan at this point is happy. And happiness is probably the most important thing you can do for him, and for you.My brother and I were both pretty apprehensive to visit our cousin the week before she passed. But sitting there laughing with her and knowing the rest of the week she was with friends and family, she died a happy person and that made it a little easier for the rest of us.I hope you can push past some of the anxiety and enjoy the times that Nathan is feeling good.xoxo

  3. Lots of hugs & love from us.

  4. I’ve started to write this a couple of times and then decided not to post it, but I worry about you guys when you talk about getting things right. You are both giving as much love as you can to your son. Your making the best decisions you can; and I for one think those are the best decisions.When I read your blogs I marvel at your honesty. That honesty allows me to recognize how amazing huge your choices are and I am often just dumbfounded thinking about how hard it must be and how courageous you all seem to be. So like everyone else, I feel like you’re getting things “right” more often than I can imagine. But I just think so much of it doesn’t have a right or a wrong. You all love each other with a humbling intensity. That drives all of your decisions, and all of your suffering I suspect. And I think that means you got it right.Love,JimII

  5. Hugs and love from me too! I can’t imagine what goes through your mind all the time. I know I’m not directly related to cancer and it is constantly on my mind…so I have NO clue how you do it.I think you and Luke have gone above and beyond with his treatments and I honestly believe that you made the best decisions for your family! I am sorry the anxiety is getting the best of you! I hope you are able to get out there and have some fun! Especially while Nathan is feeling so well! HUGE HUGE HUGE HUGS

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