Below is a picture of Kelptyn sporting his beads of courage, a collection that represents all the hurdles he had to overcome to get here. The beads will not be complete until he attains the most coveted bead of all, the purple heart=completion of treatment.
I got the call today about Kelptyn vs. Donor HLA test results. Kelptyn has surprised us all once again. Across all the HLA markers that they've selected to measure, Kelptyn is showing 100% donor!!!!!!! This is just amazing news and nothing short of miracle, especially since his donor was an "unrelated mismatch". They will repeat the test again around Day +60 to make sure he doesn't slide backwards. I am just beside myself in awe of the whole thing. What a gift, what a blessing.
Below is a picture of Kelptyn sporting his beads of courage, a collection that represents all the hurdles he had to overcome to get here. The beads will not be complete until he attains the most coveted bead of all, the purple heart=completion of treatment.
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We're going HOME!!! Almost a complete year to the date from the first time we brought our baby boy home from the hospital...we are going home again. What a fantastic day. Kelptyn has survived and conquered so much already in his 1st year of life: *spent more than 100 days in the hospital *9 surgeries *a ton of x-rays, CT scans, ultrasounds, and MRIs *23 blood and platelets transfusions to date *too many needle pokes and blood draws to count (+100) *kicked out IVs *battled infections, nose bleeds, bloody vomit/stools, excessive diarrhea, mouth sores, fevers *a broken arm *catheters *sleep study, hearing, eye, bone, and heart exams *went 14 days NPO *couldn't eat for about 3 weeks post-chemo *had highs & lows on narcotics *several nights in the ICU *bone marrow transplant * and the list goes on.... Yet, through it all Kelptyn has learned to wave bye-bye, request more, shake his head no, give high fives, and lights a room on fire with his smile. Hooray for our Happy Star! I feel so blessed to be a part of his AMAZING story. I remember crying the day we brought Kelptyn in to the hospital for his 8th stay. I didn't know WHEN or IF we'd be able to bring our baby home again. Well, today brings me tears of joy cause Kelptyn Jack is sailing on home with us. He has left a permanent mark on the wall of a tiny10' x 5' closet in the hospital. A closet in which we spent many hours in, playing or sleeping, while the wonderful cleaning crew cleaned our room. Thank you to Wendy, the painter, who painted our son's initials on the back of a small boy sailing with his Mom & Dad. We think it's symbolic of our family sailing on out of the hospital. To Kelptyn's doctors, nurses, dietian, care providers, and all those behind the scene....THANK YOU! We are forever grateful for the second chance you are helping to give our son. We are so appreciative of all your efforts and the way you care for him with such love & concern each & every day. We know it's not smooth sailing yet, but we are looking forward to seeing you on the clinic side for awhile, hopefully. To our family and friends who have supported us along the way...THANK YOU! We continue to read each and every message and we are so thankful to have you in our lives. We look forward to celebrating with you once Kelptyn is cured! To our neighbors on the 2nd floor at Children's Hospital and the many across the globe that are battling life threating blood disorders or cancer, you have touched our lives deeply and shared our journey. We will never be the same, but we will live better because we continue to fight. We will continue to pray for you and put our prayers into action. If there's one thing that we can all learn...it's that we can all do something. Whether we give of ourselves and donate blood, platelets, or bone marrow....or volunteer our time to make someone's day brighter...or donate our money to organizations that continue to help save lives....we can all do something! The following pictures and video is from our hospital departure, but the water works really hit Kelptyn's Mama when we walked into our home and I said: "Kelptyn we're home!" These are some of the greatest people on the planet!
It's official! Kelptyn made a surprising turn around and January 8th, 2012 "Day +17" marked Kelptyn's day of engraftment. His counts have been higher than 500 for three days straight. That's right, the bone marrow is growing in him, and our Happy Star is here to stay!!! Hooray!
Kelptyn's journey is far from over. The next step is to stop giving Kelptyn the medicine that has helped his white blood cell counts improve since the transplant and see if he can continue to grow them all on his own. He has to remain on immunosuppressants until approximately "Day +180", in hopes he will not develop GVHD (Graft vs. Host Disease) if all goes well. Which means he can't go to public places for a long while, other than coming in to the hospital clinic multiple times a week. We still have quite a few more changes and observations to make so we won't be leaving the hospital anytime soon, but we have made one HUGE step in the right direction. Thank you to everyone for your thoughts, prayers, and candle burning. We hope Kelptyn continues to get stronger and GROW from here on out. It would even be icing on his cake if we get to go home for his 1st birthday later this month, but heck we're just blessed to have him here with us. So after about 10 days of our son slipping into another realm, Kelptyn Jack is making his comeback slowly. He has recently battled high fevers (which have subsided), had blood & platelets transfused, had a MRI scan to rule out a possible brain virus, and we're still closely monitoring his liver function since it seems to be working overtime. However, today he's showing his Mommy & Daddy that he's on his way back to us!!! The blood lab work isn't showing us significant results yet, but Kelptyn is. Kelptyn is on his way back. Come on baby boy you can do it!
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AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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