(Day 24 Post Transplant)
Hunter watching Cookie Monster on the iPhone.
Cookie Monster no longer impressing.
Hunter had his very first Colonoscopy yesterday. Good fun.
The docs were concerned that he might be experiencing a little of the Graft vs. Host disease in his gut based on his "poop" output and some tummy & chest pain. Nothing major and nothing too serious and in fact it's quite common post transplant. It's treated with steroids and most likely just goes away. The doctor that performed the procedure turned over some really wonderful photos of Hunter's insides..........a few sides of him that I have never seen before. Didn't think there were any left??? So now we have just a few more wonderful pics for Hunter's baby book. I'll put those right next to his little foot prints and his little ringlet of hair...............that has now fallen out twice. But good news is that peach fuzz has officially been spotted on his head...so YAY.....his curls will be back soon!
Along with his colonoscopy, they also did a marrow check. His ANC has been above 500 now for 5 days in a row......so that means that his engraftment is complete. Now the marrow procedure will check to see how much has engrafted and will let us know exactly what is going on within the marrow, for example what cells it's making on it's own and the rough percentage of each as far as white cells, red cells and platelets, and to make sure that so far, all of the leukemia is gone.
They put him to sleep around 12:30pm to perform the colonoscopy and marrow and he woke up at about 3pm rearing to go. You'd never know something was just up his "yoo hoo", because he was instantly demanding his cars collection and wanted his YouTube and was wanting to get down off his bed to go play by the windowsill. Of course............nothing phases him anymore.
We should have preliminary results back from both procedures no later than Friday.
He is still throwing up a good bit, can't really keep any of his oral meds down......which is kinda not good. Might have to consider an NG Tube to put up his nose that goes down to his belly to be able to administer all of the meds we are going to have to give him once we go home. Other than that, he's sleeping pretty sound, his days are pretty good and he seems really happy and active for the most part.
Daddy has been banished from the hospital. He had to go to LA for business over this last weekend and he ended up coming back sick. I picked him up from the airport late Monday night and brought him back to the hospital and the nurse immediately sent him home. He's now back at the house and no one will go near him.....not even grandma. He's referred to himself as "the leper". He's quite sad and lonely and feels really bummed that he can't be with Hunter. Yesterday's procedures were the first ones where dad was not there. We miss him terribly and are hoping he gets better soon. He's not aloud back in the hospital until he is 100% better.......so hopefully he bounces back as quickly as Hunter does!
Well just as I'm finishing typing..........the doc came in and confirmed that Hunter does indeed have Graft vs. Host going on in his gut as well as his upper stomach. That explains the pain and discomfort he's been having sometimes throughout the day and night. Steroids start immediately and run the course for 10 days. They feel as if we should see some major improvements by then. A few nurses cheered when they heard about the Graft vs. Host.........another true sign that the Bone Marrow Transplant has worked! WOOO HOOO.......never thought I'd be cheering for ick in the gut...........but YAAAAAYYYYYY!!!!!!!!
Hunter still standing and walking on his tippy toes.
In between iPhone and YouTube time.........he actually does get some reading in...Dr. Seuss is a favorite.
These are his rosy cheecks where the Graft vs. Host is suspect.
The rash on his legs right above his knees which is another indication of Graft vs. Host. It looks like his butt.......but I swear it isn't!!
On our way, traveling in cush cush, to the colonoscopy. If he only knew what was coming....he might not be so relaxed!
About to go under for his procedure. Doesn't seem to care about much as long as he has Strip Weathers in one hand and Wingo on the iPhone.
Death of a Superhero
A Family's Story about Courage, Bravery and the Defining Moments of LOVE
Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.
This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.
He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.
People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.
Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.
Thursday, July 9, 2009
Labels: AML Leukemia, Bone Marrow Aspirate, Bone Marrow Transplant, Cancer, Colonoscopy, Doernbecher OHSU, Graft Vs. Host
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