I have been a member of the neuroblastoma mailing list since the first week of Nathan's diagnosis. It was there I learned about the antibodies Nathan got and the wonderful surgeon who was able to completely remove his tumor when the local surgeons could not. I have no doubt that me being on the listserv and learning what I did there gave Nathan extra years of life.
So - I am still a member but I rarely post.
Today there was an email from a new member. He is very concerned about the side effects of an upcoming chemo drug on his child's hearing and future fertility.
I understand the hearing thing - it is hard to realize you are damaging your child's hearing. The fertility thing? I mean of course, fertility is important. He was also concerned about the multiple lesions on his child's spine.
I guess he doesn't realize how much he is fighting for his child's life and how dire the statistics really are.
I just keep thinking how lucky this man will be if his child survives. Massively lucky! Here he is worrying about his child's future fertility and not about the efficacy of the worrisome chemo drug. Gah! It just drives me crazy.
I remember being in that point of treatment and I had realized by then I was in a fight for Nathan's life. He did lose some hearing. He wore hearing aides. It was no big deal at all. What if Nathan was alive today? What if he lived to be 25 and wanted to have children. I should hope that he and we would have enough perspective to rejoice he was alive and look into other medical options for his having children.
So - I think perhaps it is time to unsubscribe to the list. My perspective is just so different now and I cannot allow myself to say these things there.
Here is a picture from September 2006. I can't believe that is 3 years ago. Nathan in one of his favorite places, Times Square! (or tiny square as he said when he was smaller - mostly because he couldn't hear the "s" due to his hearing loss!)
4 comments:
I have gone off the list a few times for similar reasons. While I have not lost a child I have become incredibly frustrated with the list at times. I now am on the digest that sends a message out once a day and quickly scan the topics to see if there is one I want to read. Even still I do become annoyed at times. I had even tried to see if there could be a relapsed/refractory list but there did not seem to be enough support for it.
I don't pretend to understand your pain or perspective but I can speak to my current state of mind and how dramatically different it is from when we first entered this world and reading some of those concerns now make me upset. And we are lucky enough that Will is still fighting and has a good quality of life. I'd imagine I'd be angry and frustrated with all the relapsed families as well...wanting to point out the obvious things they are missing out on while lamenting their lot in life.
Have you considered sending an email to the list expressing your thoughts? Not to one item in particular but as a sort of wake up call? People always seem so joyous to hear of 'long term' survivors. I would guess a message from someone whose child is gone - while certainly not an uplifting message - would be even more powerful for all the people (myself included) who lose perspective from time to time when tunnel vision sets in. It is surprising how many people spend all their time looking backwards at the way things might have been - and bemoan the differences - instead of looking ahead at where this road leads for most kids and then celebrating each day. I know that is where I go to restore my perspective when I realize I have veered off track.
I think of Nathan every time we go out back and I see the green & yellow John Deere toy tractor. I think of Erin each day I put on my ‘manyard’. I think of Penelope when my daughter wears a particular pair of slippers. I think of Lucas anytime I see a vacuum display at the store or a purple balloon. I think of Max (and now Erin) each day at work as I have added their school pictures to my line of vision (right next to Will’s) just to the left of my monitor. Some people are incapable, or chose not, to think about what their life would be like when their child is gone. That is understandable. However, if you ignore this likely reality then I think you can forget (which seems odd) how truly lucky you are a relapsed parent for each and every day. I don’t know if you are comfortable trumpeting that message but I think it is one that is needed and can be quite useful. I truly believe we can save Will. However, I am quite familiar with all the other parents who “in their gut” felt the same way and now their children are gone and I think realizing this forces you to (at least try) to be a better parent by ignoring all the silly shit (like driving to Vermont…boo hoo!) that you can tend to focus on as a negative instead of a wonderful opportunity to embrace something that helps keep your child alive! I think a reminder is always a great thing….if you feel like sharing it I think it could be useful. If not? I certainly don’t blame you…I’m not sure I could do it without sounding angry or bitter.
I agree with you. I just want to say 'get real' when I read things like that. But then again, I had no idea in the early days just how dire things were for us...even with the awful stats we were given. And also, those ppl may not be diagnosed at stage four the way we were, and there are sometimes better stats for those kids and in that case, we might have thought the same thing. Dunno, but I totally hear ya!
can't speak to the listserv issue, but I look at Nathan's picture and think what a huge loss you live with. And what a sweet boy he was.
This is my first visit here and I have to tell you I was touched by your story. Perspective is sometimes so powerful, isn't it?
I hope to be back soon and hope you're having a great weekend.
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