These lines have resided in our son's body for the majority of his life, they have tested his blood a countless number of times and delivered hundreds of medical treatments that have forever changed the course of his fate. They have pushed us to the limits of science, had us marvel at modern medicine, to ultimately bring us where we began....humbled in God's grace. Kelptyn has shown us a courage and a harmony in life I have never known. When I told Kelptyn the good news, he listened very carefully and then said "AMEN"!
I remember when the lines were placed in his body, I didn't know how long he'd need them, and I didn't know if he would live life without them. I continue to be inspired by Kelptyn's spirit/zest for life. He shows me every day the simple beauty of living and the kindness of strangers. His blood production continues to look pretty "normal" and the bone marrow transplants seem to have been successful!
We continue to very slowly wean meds to gain a better understanding of his ongoing ICP issues. We are hopeful that once his broviac is removed that his doctor visits can be less frequent and that his blood labs/pokes can be fewer and far between. Time will tell, and if we need to, Kelptyn can have a port placed back in his body for easy blood access. We are praying he won't need one.
So when can we say "He's in the clear"? Well, we're still not really sure. If Kelptyn can get off of his steroids and not have ICP or other issues for at least 6 months we'd be more confident. However, he has his donor's cells growing in him now so his risk for GVHD continues to be very real. We are optimistic that one day he and his donor cells will be able to live together and get along in his body without medical interventions.
We remain forever grateful to all of Kelptyn's friends, family, medical staff, angels, and those we have yet to meet. We hope you can celebrate this milestone with us, as we continue to cheer him on. We look forward to introducing him to swimming, playing in ocean water, and drinking from an open cup.
Below are some videos that I told my sister, Auntie Rachel, I would share with all of you. They are very small windows into our daily routines that have helped carry our son to this day. We are very proud of him and his progress. Who knows what other "life lines" he'll cross, but I'm certain he'll surprise us.