If you're looking to help someone in need this Holiday season...

My baby sister could really use some help. My 12 year old nephew, Damon, suddenly felt into coma last Monday. It was discovered that he has a brain stem tumor (glioma. Google it and be horrified). He survived a surgery that only has a 20% survival rate. But his biggest hurdle now is waking from coma. His doctors already expect that he may have suffered significant damage, as he was without oxygen for some time before paramedics arrived. If/when he wakes up radiation and drug treatment will immediately begin to shrink/eradicate the remaining tumor on his brain stem (as they can only remove so much without damaging that delicate area).

Needless to say, this poor kid has a really long and painful road ahead of him. And the odds of 1 year survival are incredibly low, unfortunately. I made a trip to WI for a couple of days last week, as I was called Tues. night when they didn't initially expect him to be a surgical candidate. I thought I was going to say my goodbyes as I made the drive last Weds. He stabilized enough for surgery on Thursday (my sister and her husband's 1 year wedding anniversary, incidentally) and pulled-through, so we all feel like there is hope that he could be the exception and one of those nothing-short-of-miraculous cases who survives long/longer-term.

Everything is still very unknown, but while they are with him at the Wisconsin Children's Hospital in Milwaukee they are 2 hours from their jobs and have the added stress of being unable to pay their basic living expenses. My folks are missing work, as well, as they are in Green Bay (90 minutes from their home) at my sister's home caring for my younger autistic nephew and getting him to school each day. If you are able to help my family out in even a small way, we'd all so enormously appreciate it. I set up a You Care page that deposits Paypal donations directly to my BIL's checking account. Already we've managed to raise enough to cover 2 months worth of their mortgage payments, but these bills are going to continue to rack-up and we're expecting him to be in the hospital well into 2014.

My sister has also set up a Caring Bridge page to journal his progress.

If you feel compelled to donate, my entire family thanks you. Any amount is enormously appreciated. Thank you.

{{{{Zoom Zoom and family}}}}

Thanks, Catrin. We can use all the hugs we can get this year!

((((((zoom-zoom, Damon & family)))))) What an awful thing to have to go through.

What a horrible news about your nephew. I've been thinking most of today on what to write, what to say. Words escape me because it is so rare that we face such devastating news. My heart goes out to Damon, his parents, to you and your husband and to all of Damon's relatives. Even though I only know you from this forum and what you post, the photos of your husband and your son on a tandem racing... it's not as though we are really good friends. Yet, the news still leaves all of us at a loss.

I wish I have words of wisdom to say or to pass how I really feel. One of few times in my life, words escape me.

Please accept my empathy for what you and all your family members are going through. And let us hope for the best outcome possible. We should never give up without trying.

I wish the best for Damon and all his family.

Sincerely,

Shawn

Thanks Ladies. I like to think Damon feels everyone pulling for him.

So sad. So late last week the hospital did another MRI and brain scans to get a better picture of brain function. The news was not good. It was evident that the damage suffered from lack of oxygen and/or pressure from spinal fluid had damaged his fragile brain beyond the point of recovery. On Friday my sister, her DH, and my nephew's "sperm-donor" father made the gut-wrenching decision to remove his life support on Monday…yesterday. At 11AM EST they told hospital staff that they were ready to start the process.

At 11:30 Damon was no longer hooked to any tubes or wires. My sister finally was able to crawl into bed with him and hold him. 10-15 minutes later he was gone. He died in his mother's arms. No parent should ever have to go through this. I break down sobbing every time I envision those last minutes. Last evening I looked at the clock and realized that it had been nearly 2 weeks to the minute that I got the call from my dad that Damon was being airlifted to Milwaukee.

We're hoping to have his funeral later this week, when our family will all be together in Green Bay. To honor Damon's memory we're all planning to wear superhero T-shirts, as he was a HUGE superhero geek, especially Marvel Comics.

In a humorous little aside: the hospital was making thumbprint lockets for all of the family members. They were having a difficult time getting a clean thumbprint. It turns out his thumbs were a bit calloused from his avid X-Box gaming. While he was in a coma my sister considered having someone bring an X-Box controller from home to put in his hands…with the thought that that simple device could be just the thing to draw him back to consciousness. :)

We miss that sweet, funny, lovely boy so much.

I'm so very sorry. (((((((zoom-zoom & family)))))))

I am so sorry.

Veronica

So sorry Zoom Zoom ((((((Zoom and family)))))

Catherine

So very sorry for the loss of your nephew, my heart goes out to your family.

I am so sorry. There really are not words for anyone losing a child. My thoughts are with your family.

Thanks, ladies. It's times like this that I wish I weren't so geographically separated from my family. Stupid Lake Michigan!!

So sorry Zoom Zoom. There are some times when life is just not fair at all.

Heart wrenching decision and the news of your nephew's passing. Only solace in all this is that your nephew didn't suffer horrible pain and not knowing what was going on. And that your sister was able to hold him as he slid away from this world. Emotionally very wrenching...

Yes love the idea of everyone wearing a super hero T-shirt in remembrance. Times like this it's good to remember the good times the fun times and to cherish his memory.

My condolence to you and your family,

peace

Shawn

I am very sorry to hear this. Hope you all find some peace in his memory.

I'm so sorry too to read this news. There is never a good time to die, at least for those who are left behind. But the holidays are the worst, at least for us who have been going through something like this 2 years ago and 5 years ago (both during the holidays). My thoughts and prayers are with you and the family.

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Originally Posted by Helene2013

I'm so sorry too to read this news. There is never a good time to die, at least for those who are left behind. But the holidays are the worst, at least for us who have been going through something like this 2 years ago and 5 years ago (both during the holidays). My thoughts and prayers are with you and the family.

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I am so sorry that you have to understand this pain, too. I hope that each passing time will heal some of that rawness. I find myself going from feeling warm with happy memories, then feeling guilty about that, then numb. I hate that I don't live closer and can only do so much to help after the next few days when we will be with my family. I know I'm going to feel really guilty getting back to our life on this side of the lake. I'm not sure how my sister and her little family do that. They can't. But I hope she will take advantage of all help she can for as long as she can.

(((Kristen))) I'm so sorry. I was really hoping for a miracle.

Hugs Kirsten. Please tell us what day. I have a superhero t-shirt and I would be happy to wear it.

I'm sorry to hear the loss of your nephew, zoom-zoom.

Oh, I am so, so sorry zoom-zoom. Heartbreaking.

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Originally Posted by TrekDianna

Hugs Kirsten. Please tell us what day. I have a superhero t-shirt and I would be happy to wear it.

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Fri. is the tentative date. I love thinking that people far-flung have him in their thoughts.

I haven't said anything because as a mother I know there's nothing that could be said to make anyone feel better and I've been at a loss as to what to say. I do want you to know that I've been thinking about you and your family and hugging my own boys knowing how blessed I am.

(((hugs)))

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Originally Posted by zoom-zoom

Fri. is the tentative date. I love thinking that people far-flung have him in their thoughts.

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Just wanted to let you know that I am thinking of you and your family zoom-zoom (and it doesn't more far flung than Australia).

{{{{hugs}}}}

I'm so so sorry. Sending prayers and thoughts to you and your family.