I guess I have been told grief is like this. You are doing OK and then something or things knock you down.

I am still frustrated with my voice – did I mention I had laryngitis 10 days ago? I still cannot sing. I couldn’t even talk at first so there is progress but my voice is not better yet. Singing is one of few joys I get out of life right now.

Last night I walked into Hospice to take Julia to her grief group and to go to the parent group. There is a woman on the couch and I recognize her. It takes about 3 minutes and it comes to be who she is. She is the last nurse to come to try to help Nathan the morning he died. He had been in incredible pain all night. They finally sent her with some medicine for him. I remember how hard it was for her and she mentioned that she doesn’t usually go see kids because it is too hard for her with her own at home. She was visibly upset – and has every right to be. There in front of her was a seven year old child in pain and dying. She offered to stay until more of the ordered medicine arrived but I told her she could go – and she did, with much relief. That medicine arrived about a half an hour after Nathan died.

So – I went up to her last night and told her who I was. Tears started flowing immediately, automatically for both of us. She was there at the worst moment of my life and all those memories came back. She was there with her own second-grader. He daughter had just lost a good friend and was having trouble dealing with it. She was apologetic about being there since it was obviously hard for me. I told her it was probably better running into her there, in such a place where tears are normal, than in the grocery store or something. She asked me, with hope, if she was able to take care of Nathan’s pain that morning. I had to tell her that it helped for a few minutes but did not last.

We had our group and it was fine that she was there. The whole thing just took a lot out of me. I came home pretty much useless and Luke took care of the girls and I went out for some dinner. I am still kind of shaken up about it.

Today I read about another child with Neuroblastoma. She is in the ICU after having a reaction to her treatment. This treatment is the trial that Nathan was the first child to do last fall in NYC. This is the trail we were told could “CURE” Nathan. I have followed some of the children who did this trial after Nathan did. At least two others are also dead. NONE had any overall improvement and several progressed while on the trial. A few were stable on the trial and progressed afterwards. It has been a big fat failure while having some serious side effects. High blood pressure – crazy bleeding – obliteration of bone marrow – respiritory difficulties during the infusion – I am sure there are more. Not to mention spending all that time in NYC away from home for 99% of the kids. This sick child is on a respirator. Whatever happened to her happened during the infusion. During Nathan’s second infusion his sats went in to the 60’s for a couple of minutes. It was scary. There was much medical action going on even though he was being infused with a radioactive isotope and was emitting high levels of radiation. The study doc was actually the one that went ahead on got right there next to Nathan to try to help him and took the radiation. In my mind – I see this child in this situation, but instead of the problem being resolved – they had to intubate her. That could have been Nathan – almost was, probably.

It makes me uneasy. My first reaction is to wonder why this trial is going forward with such dismal results horrible side effects. Then I remember the situation that we were in. We were grateful that there was a trial for Nathan. He didn’t qualify for any other trial, really. The trial represents hope, even though it is now known to be very slim hope. When we did it, there was great hope. Either way – I guess I DO want the doctors to be able to offer this trial as an alternative to going home to die. The problem is, I want that for the PARENTS. Would we have put Nathan in that trial if he was just getting to it now? Armed with the knowledge of potential side effects and chances of having any sort of reduction in disease burden being slim? It is hard to say. I am sure this doctor is still serving up a very optimistic view of this study. I am sure the truths we know about it are being sugar-coated. I just don’t feel that any more kids should be put through this study. I guess it is just as well that it isn’t up to me.

So – all of that, plus the insurance crap leaves me not in the best state today. Oh well, what can I do?

5 responses to “Blows

  1. Wow. That is a lot for you to swallow right now. I have no words. Just know that we all love you and think of you all EVERY day. (((HUGS)))

  2. Thinking of you, Susan.

  3. So sorry.What a balance to strike between an individual child’s end of life experience vs. moving the science forward with enough data. You said it’s good you’re not in charge of that. My problem is that it’s too hard for anyone to make that call.All our love.

  4. (((HUGS))) I can’t imagine what you must face on a daily basis Susan. You are always in my thoughts!

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