Kelptyn's most recent test results are showing 2% donor cells on two different markers. We will move forward with the lymphocyte infusion in early July to see if it helps any of the residual donor cells stay their ground. Kelptyn continues to have his smiles, playing, and giggles despite a rough couple of days.
We brought Kelptyn to the hospital clinic for an unplanned visit on Wednesday after a rough couple of days full of vomiting, diarrhea, and an increasing rash. Kelptyn's been having trouble tolerating anything in his digestive tract and his breathing is a bit more labored. Kelptyn's doctor readmitted us to the hospital after some scans found some fluid on the lungs and in the heart cavity. We've seen a team of doctors over the past two days, Kelptyn's receiving diuretics every 6 hours to draw the fluid off and he had a rash biopsy yesterday. The biopsy results today showed some start of GVHD (Graft vs. Host Disease) which we will just treat with steroid cream for now. We still aren't completely sure at this point in time if there is a secondary blood issue developing post transplant, like TTP. We hope not.
Kelptyn's most recent test results are showing 2% donor cells on two different markers. We will move forward with the lymphocyte infusion in early July to see if it helps any of the residual donor cells stay their ground. Kelptyn continues to have his smiles, playing, and giggles despite a rough couple of days.
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Dear Dada,
Today, I celebrate you and I thank God for choosing you to be my Dada. How do I begin to thank you for everything you do for me each and every day? Ever since the day I was born you've been my best buddy. You have taught me how to sing and play music through the good times and bad. You have been forever at my side with every needle poke & test, yet always have a positive outlook with the results. You encourage me to try new things. You've given me all your strength when I was weak. You hold me all day and all night when I'm very sick (no matter how tired you feel). You feed me, change my poopy pants, bathe me, and dress me. You put me first above all things and remember to give me my medicine on time. You wrestle with me and make me laugh through unbelievable moments. You have taught me so much over the past 16 months, like how to... ....smile when your body hurts ....make the BEST of every moment ....fill a room with marvelous melodies ....sail through a storm ....and NEVER give up Thank you for being my Dada. You are the man I admire most. I LOVE YOU! Kelptyn Jack Good News! Kelptyn's same East coast donor has agreed to donate lymphocytes in July. Donating lymphocytes is a cyclical 8 hour blood draw and is a full day of giving for the donor. Gosh what a selfless soul this woman has. So we will be keeping a watchful eye on Kelptyn's donor cell levels for the next couple weeks and decide if his medication changes are enough to stabilize his counts or if we need to move to a lymphocyte infusion.
Kelptyn has been extremely happy since we've come home from the hospital. He has been enjoying the fresh air during stroller rides, laughing, and playing at his music table. However, his first chimerism post-transplant #2 demonstrates 16% donor cells on one marker and 17% donor cells on another. This means there was virtually no change in donor cell engraftment from before the 2nd bone marrow transplant to after. We are adding an additional immunosuppressant medication, in hopes, that he will continue to hold on to these donor cells.
The wheels are in motion to contact his same donor on the East coast to get blood so that we can give him a lymphocyte transfusion to boost his counts a bit. It will be about another month before we can get and give him lymphocytes. We have been told that the lymphocyte procedure is not as involved as a bone marrow transplant, just a few days in the hospital. Hopefully, his donor will be so gracious once again to give of herself. Kelptyn's doctor commented that Kelptyn could not receive a 3rd bone marrow transplant for at least 9 months to a year and that his chimerism would have to show 0% donor. He would also have to have a different donor for a 3rd transplant. We are again hoping that he won't need a 3rd transplant. For now, we are enjoying the simple pleasures of being home and taking things one day at a time because ultimately none of us know how many days we get. |
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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