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We are home from City of Hope and what a wonderful and exhausting day today has been.
Driving on the freeway, when City of Hope came into view my eyes welled up with tears and my HOPE was once again restored. I knew that we were exactly where we were meant to be.
Pulling in, the sight was breathtaking. Everywhere you go you see HOPE. And everyone there knows the feelings you feel, but the entire place is filled with a positive atmosphere. It is beautiful, with a rose garden and many other wonderful things.
We were told to go to valet where our van was valeted and we went inside to check in at New Patient Services. From there Joey ran around and loved watching the fountain. We went to registration and signed the Acceptance Letter. Joey was accepted. Once again we had HOPE. From there a volunteer took us to the 3rd floor... clinic. Each floor has 4 pods, we went to pod 3A. Before 1 (our appointment time) we were taken back to a room. We were soon moved to a conference room and waited for Dr. Rosenthal. Joey needed to go potty so I took him and they had a little kids potty (which he was thrilled with). By the time I got back we had Dr. R, a nurse, and a social worker in the room waiting to meet with us.
Dr. R explained LCH in a way I had never heard it explained, but in a way it made perfect sense and explained why Joey keeps relapsing. he explained how stem cells work, and what happens when we do transplant. We talked about reduced intensity conditioning for Joey and the general consensus is this is likely best for Joey.
From there we discussed donors and finding Joey his match. Melanie is being tested, we should know within 2 weeks or so if she is a match. Regardless of if she is a match or if we need an unrelated donor, they want to use marrow, not stem cells. If a living donor is not located we will look at cord blood.
They drew the blood to start Joey's HLA typing. If Melanie is a match we could transplant in 6 weeks, if not we are looking at 12 weeks. They told me when transplant is done, and he stays histio free, he can be considered CURED!
HOPING, PRAYING, BELIEVING!
Never lose HOPE, never give up! HISTIO THIS IS YOUR LAST STAND! WE WILL WIN AND YOU WILL FALL!!!
Thanks be to God for bringing us where we are today and for answering our prayers that Joey be accepted.
Marrow is the best option for him, because if he loses engraftment they can get more cells from a living donor AND because it reduces the risk of Graft Versus Host. They will have a list of cord blood too, but that will be a last option.