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If you're looking to help someone this Holiday season... (Read 171 times)

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rectumdamnnearkilledem

    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.

    Getting the wind knocked out of you is the only way to

    remind your lungs how much they like the taste of air.    

         ~ Sarah Kay

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    rectumdamnnearkilledem

      Thanks to "Limping Monkey," whoever you are… Smile

      Getting the wind knocked out of you is the only way to

      remind your lungs how much they like the taste of air.    

           ~ Sarah Kay


      Evolving body parts

        So sorry to hear. Prayers and $ are on the way. Wish I could do more. I too have a 12 year old son, this is so scary.

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        rectumdamnnearkilledem

          So sorry to hear. Prayers and $ are on the way. Wish I could do more. I too have a 12 year old son, this is so scary.

           

          My son is also 12.  He is 7 months older than his cousin.  I know he is scared on levels he can't quite verbalize.  Heck, I am scared on levels that I can't quite wrap my head around.  I wouldn't wish this fear and sadness that my sister is enduring on anyone.  Aside from helping her and my BIL with the financial end of things I feel helpless.  We're all hoping he'll come out of the coma and we'll find that he's suffered minimal damage and will bust all the odds.  But the realist part of me knows that this is not likely.  And thinking of not seeing him grow into a handsome, kind, smart young man just guts me.  His brother's autism prevents him from fully understanding what is happening, too, which simply adds heartbreak.  He's seen his brother in the ICU hooked up to so many machines and his lower lip and jaw quiver, but he doesn't understand why and we're not sure just how much he can process.

          Getting the wind knocked out of you is the only way to

          remind your lungs how much they like the taste of air.    

               ~ Sarah Kay


          jfa

            Prayers out to Damon and your family Kirsten...

             

             

             

             

             

             

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            rectumdamnnearkilledem

              Thank you, Joe.

              Getting the wind knocked out of you is the only way to

              remind your lungs how much they like the taste of air.    

                   ~ Sarah Kay


              Strict WTF adherent

                modest donation sent

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                rectumdamnnearkilledem

                  Thank you.  There is no such thing as modest, here.  It's all huge.

                  Getting the wind knocked out of you is the only way to

                  remind your lungs how much they like the taste of air.    

                       ~ Sarah Kay

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                  rectumdamnnearkilledem

                    I'm continuing to see so many RA names and many people I suspect are from RA.  The generosity pouring in from all over is just flabbergasting.  I know this is already taking a huge weight from my sister and BIL's shoulders not having to default on payments and utility bills.  Thank you, friends.  Runners are, in general, such an amazing, giving group of people.  I feel very honored to lace-up with y'all!

                    Getting the wind knocked out of you is the only way to

                    remind your lungs how much they like the taste of air.    

                         ~ Sarah Kay

                    redleaf


                      I'm continuing to see so many RA names and many people I suspect are from RA.  The generosity pouring in from all over is just flabbergasting.  I know this is already taking a huge weight from my sister and BIL's shoulders not having to default on payments and utility bills.  Thank you, friends.  Runners are, in general, such an amazing, giving group of people.  I feel very honored to lace-up with y'all!

                       

                      I can't even imagine going through what they are. I sent a little bit and hopefully will send more in the new year Smile (unless there's some sort of deadline I missed?)

                      First or last...it's the same finish line

                      HF #4362

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                      rectumdamnnearkilledem

                         

                        I can't even imagine going through what they are. I sent a little bit and hopefully will send more in the new year Smile (unless there's some sort of deadline I missed?)

                         

                        This fundraiser goes through Feb.  Depending upon the situation we may do another one.  Even WHEN he's back home this will involve a lengthy treatment process and hospitalizations, even with the best case scenario.  Money has always been tight for my sister and her husband, but they've got almost no debt and are really good with their finances.  They just don't have a ton of money and no wiggle room for a major $$ medical event like this.  This is the sort of thing that throws even the most responsible money-managers into a financial tailspin.  My MIL was telling me that when my FIL was undergoing cancer treatment that their out-of-pocket was $8k…and these are people with sizable savings who were able to pay those bills and living expenses without issue.

                        Getting the wind knocked out of you is the only way to

                        remind your lungs how much they like the taste of air.    

                             ~ Sarah Kay

                        mab411


                        Proboscis Colossus

                          Doing what I can: a lot of prayers and a little money.

                           

                          I hope the hospital has some sort of housing facility for them while they're there, so they're at least not having to worry about a hotel?

                          "God guides us on our journey, but careful with those feet." - David Lee Roth, of all people

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                          rectumdamnnearkilledem

                            Doing what I can: a lot of prayers and a little money.

                             

                            I hope the hospital has some sort of housing facility for them while they're there, so they're at least not having to worry about a hotel?

                             

                            Thanks so much!

                             

                            They've been staying at the home of one of my BIL's family members.  We also have a cousin in Milwaukee and there's a nice Ronald McDonald house near the hospital.  What a great charity that is.  While in Milwaukee last week I spoke with a mom whose DD is at the hospital on a mechanical lung (her transplanted one failed after 4 years).  She's at the Ronald McDonald house and they've taken good care of her needs while there.

                            Getting the wind knocked out of you is the only way to

                            remind your lungs how much they like the taste of air.    

                                 ~ Sarah Kay

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                            rectumdamnnearkilledem

                              Continued thanks, friends.  My sister just posted a Caring Bridge update a bit ago.  They're trying to get a better picture of his brain status/function via brain-mapping scans than what yesterday's MRI showed.  We are doing our best to remain hopeful.  Christmas with my family will be very bittersweet this year.  We're all planning to converge in Milwaukee to be together.  It's all so very surreal trying to come to terms with how very different this holiday season is from years past.  We had so much more to be thankful for on Thanksgiving than we really realized.

                              Getting the wind knocked out of you is the only way to

                              remind your lungs how much they like the taste of air.    

                                   ~ Sarah Kay

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                              rectumdamnnearkilledem

                                ** Update:

                                 

                                It is with the greatest sorrow that I report the passing of our dear Damon. On December 20 Damon had brain scans to determine function and damage. It was found that his brain had suffered considerable damage. He would never recover and be able to undergo treatments to further shrink the remaining tumor on his brain stem.

                                 

                                On December 23 life support was removed and Damon was able to pass peacefully in his mother's arms. On December 28 a massive gathering of friends and family assembled to say goodbye to our wonderful guy. Many attendees donned our best superhero shirts and apparel to honor our favorite little real-life superhero. The service was an emotional celebration of a wonderful life cut far too short.

                                Getting the wind knocked out of you is the only way to

                                remind your lungs how much they like the taste of air.    

                                     ~ Sarah Kay

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