signmeuptoo
Folding and Crunching Not just Breakfast
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1 edit | [Serious] Nephew Update
Hey guys! So I am up in Connecticut now after a slightly tiring flight the day before yesterday. It is good to see and be with family in this tough times.
I have seen and been with my 2 year old Nephew, Colin, who has brain cancer. Colin's update, from what I experienced:
His cognitive and emotional awareness/skills seem affected to some degree. He is mostly quite sad and in pain. He is distended because bowel movements aren't coming along without major assistance, including via enemas.
He was brought home for the interim for his psychological and emotional well being and indeed, we did have him smile a little bit, which felt good against the bigger picture.
He is facing very very major and exceedingly dangerous surgery and getting him in as a good a frame of mind and having him strong before it is very important.
It hurts to see him in this state, but the love I feel and can cherish having seen him is big.
My sister, her husband and son, and I came over to their house, and not only visited with Colin, but gave them some very much needed help with household chores. It felt very good being useful to the people who are so good to me.
My birthday is coming up, and the birthday present I want is my nephew's life saved and improved. I'll cry my head off with thanks if I can have that as a gift. I am fighting tears as it is (so far I've been able to hold it together pretty good, which is a big feat for a guy with severe bipolar disorder).
As you all enjoy your holiday, good food, and good company, be happy, and send some of those happy waves towards my precious young nephew, Colin, if you have time. At some point, if the time presents itself and it is "safe" to ask my brother and his wife, I will post a photo of Colin here. I call him my little bruiser, he is a wonderful, tough little guy who is fighting a heroic battle and is very brave.
God bless you all and best wishes, from me, Mark, and my darling wife Alain and son. Peace to you all.
EDIT: I just want to include that I love you all here, hope you have some very happy times over the weekend!
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usa2k
Please PRAY for Rebekah
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| Re: [Serious] Nephew Update
Prayers continue.
Hope there will be precious moments in every day for all your family.
I pray Colin will have the exact expertise, and care he needs.
Helixers pursue success in adversity.
I am expecting great success for Colin.
God bless him!
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Jim, VoIP 12/2002, VOIPo 2/2007
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santy
Don't Follow Me, I'M Lost Too
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join:2001-06-10
Wilmington, IL
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Re: [Serious] Nephew Update
Enjoy the 4th of July holiday, cherish your time with family no matter what the reason. Prayers are continuing from the windy city area.
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PeteC2
Got Mouse?
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| My very best wishes for Colin...and you, on this 4th of July.
Tough as things are, do not forget to breathe and remember all the good things that also go on...even during the worst of circumstances.
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Deeds, not words |
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BadHat
Hook'M Horns
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Rosa's Place
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Prayers cranked for Colin... |
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Vtblues
if you can't get out of it, get in to it
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join:2006-05-29
Brookfield, VT
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My prayers for Colin continue |
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signmeuptoo
Folding and Crunching Not just Breakfast
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| reply to signmeuptoo
Well, I just spent time with my brother, his wife, and my two nephews (Colin and his brother) at our house. Colin smiled a couple of times which was nice to see. One of the times was when I jumped in the pool and did that "OOOH, cold water!" gasp. It made Colin laugh, making it worth it hands down.
He has a heck of an appetite and was able to "walk" with help just a little today, in exchange for food he wanted. His appetite is so strong that you have to stop feeding him or he'll over eat. That is heartening, but we heard details of his situation and the complex set of concerns and considerations and the personalities of the doctors and surgeons who are and who might be treating him. Boston is being considered for certain realistic reasons.
It is hard to make Colin smile, but when he does it lights up the room. He is just such a sweet guy and a tough kid. My brother thought bringing him in the pool for a few seconds would be therapeutic to him, though he did protest until I jumped in and made him laugh. Other than that, I haven't gotten a smile out of him and all I want under the sun is to make the kid feel better and get well.
Thanks for your support guys. Love y'all.
--
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signmeuptoo
Folding and Crunching Not just Breakfast
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| reply to signmeuptoo
A new update on my nephew folks:
There is a surgeon in NY who expressed a level of confidence that he can resect 90 percent of my nephew's tumor, so that is being investigated and considered.
Boston Children's is another possibility.
During my time up here in CT I have seen Colin twice and although blue most of the time, he does break out in smiles too, which is very important, he is 2 years old, so...
He is back in the hospital right now because of his own request to go there, due to pain he was feeling. They will be checking for fluid build up and so forth.
He is in a desperate battle but we are putting a very brave face on things and keeping our faith.
Thanks for your continued support.
--
Join Teams Helix and Discovery. Put that fancy computer to good use helping to find a cure, your mom will love you for it. »Team Helix »Team Discovery |
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onDvine
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So. CA, USA
clubs: | Sounds like everything's being done that can be. Positive thoughts still coming his way from here.
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usa2k
Please PRAY for Rebekah
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join:2003-01-26
Canton, MI
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Not forgotten! |
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rfhar
The World Sport, Played In Every Country
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Buicktown,Mi
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still praying |
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Vtblues
if you can't get out of it, get in to it
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Brookfield, VT
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Colin is in my thoughts and prayers every day. Thank you for the update |
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wanabegeek
1917-1987
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Phoenix, AZ
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Mark, you, Colin and the family have my love and prayers. God bless you all!
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Inchworm
butterfly wannabe
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Bozeman, MT
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Praying for Colin |
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Santa Fe
I think therefore I Fold.
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Freight Yard
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Prayers & MoJo being sent for Colin! |
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signmeuptoo
Folding and Crunching Not just Breakfast
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| reply to signmeuptoo
Some good news guys!
I will fill in the details better later, but my brother and his wife did some serious reading of Colin's reports, and talked to the right people, and:
They went to NYC while one of my sisters and I stayed at the hospital with Colin. They met with a leading surgeon who has a very high level of confidence that he can resect the tumor up to 100%, do it in about 3 hours, and without as much blood loss as the other hospital was saying, where they had planned an 8 hour procedure.
It sounds almost too good to be true, but this doctor is apparently one of a very small handful nationwide that have good experience with cases like Colin's.
The procedure is scheduled for Wednesday in NYC. Colin came over with brother, mommy, and daddy to my sister's house where I am staying and I was able to make him laugh: He thinks it is funny when I jump into the pool and gasp from the cold water. He asked for me to jump in because days ago I did the same thing and it delighted him. Yes, he is away from the hospital for a couple days for the good it will do him to be around family life and not in a hospital.
I am headed back to TN Monday and when I get a chance I will post Colin's photo so you all have a face for your prayers.
We have only begun to fight!
--
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onDvine
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| said by signmeuptoo  :... a leading surgeon who has a very high level of confidence that he can resect the tumor up to 100%, do it in about 3 hours, and without as much blood loss ... I hope he's right. That would be wonderful.  |
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lonnyb
lurking no longer
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That's the spirit!! It is amazing how our bodies heal. |
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