To Nicksmom...

lamomMarch 2, 2009

To nicksmom,

Thanks for the referral to Oncochat. It has been very helpful for me as it relates to my son with rhabdo. Also, the family issues, especially detached 1/2 sibs etc. comes up too.

Thanks again.

LAMOM

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nicksmom

You're very welcome. Although, "oncochat" doesn't sound familiar to me. Unless it's part of ACOR. At any rate, I'm glad that you're finding the support you need there. Here's the specific site within ACOR I hope you found:

Rhabdomyosarcoma (Cancer) Information and Support Group
rhabdo-kids@listserv.acor.org

How is your little warrior doing?

    Bookmark   March 4, 2009 at 7:39PM
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lamom

Nicksmom,

Oncochat is the chatroom on the ACOR site. I will look for the rhabdo information and support group today. Thanks for the address.

DS is doing pretty well. He was hospitalized two weeks ago for a fever due to an infection of his central line. they replaced it, had him on heavy anti-biotics including one of those little pumps at home for a week. For now though, he has a lot of energy, his counts are good and he's in good spirits. We did a lemonade stand last week, he worked like a true businessman, made $45, a lot for a six year old. SGS 8 came over, got jealous and didn't want to pay for his lemonade. SD35 had invited DS, again, to spend time with SGS8 who had a cough, again, we declined. She was supposed to keep both kids, found out SGS8 was coughing, picked him up anyway so DS was odd man out again. Very clear as to who is important to them and who is not. They still don't get it and I don't think they will.

Anyway, thank you so much.

    Bookmark   March 6, 2009 at 6:17PM
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nicksmom

lamom,

I'm glad your little guy is doing well. These kids are pretty tough, aren't they?

As for the others in your family...well...sometimes ya just gotta remember this: "ya can't fix stupid". Seriously, if you can just remember that, it will help you to get through the moments when you just want to shake the livin' snot out of them.

    Bookmark   March 6, 2009 at 8:19PM
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lamom

Thanks again, I went on that rhabdo list. But, there is a Nick with a relapsed rhabdo a mom is talking about there. That is not your Nick?

    Bookmark   March 7, 2009 at 8:31AM
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nicksmom

No, not my Nick. I only visit the list as a nurse. I have referred many of my patient's parents to it for a source of support and to connect with other parents going through the same thing. Because, as much as I love what I do and empathize with my patients and their families, I know that I cannot fully grasp what they go through as a parent of a child with a life-threatening illness. I hope that they (and you) can find strength in numbers.

    Bookmark   March 7, 2009 at 9:14AM
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