We went in today to meet with Caleb's doctors. It was a little funny, because we took the whole family (since it kind of involves everyone) and we could hear the doctors out in the hall while we were in the waiting room talking about how we were going to need a conference room for our meeting! (Which we actually did!) In attendance were Caleb's two doctors, one neonatal doctor to act as an advocate for the girls, the child life specialist, the child psychologist, and the pediatric nurse who does the blood draws...oh, and the seven of us!
This is what we learned.
Both girls are still in the running to be Caleb's donor. Both Brooklin and London match all 10 markers that they test for...meaning that Darwin and I made three exact copies (blood marrow wise) in a row! They drew blood from both girls today to test for some more matching type things...like blood type...and to basically match whether or not they have had the same type of viruses/sicknesses. Neither of the girls have ever had a blood draw before, so they were both pretty nervous. Lucky for them, Caleb requested numbing patches for everyone so they really couldn't feel much of the poke! ...and Isaiah was glad he didn't have to have his blood drawn.
Second, the doctors told us they had contacted Kapiolani Medical Center here in Honolulu, and they said they would be happy to do his bone marrow transplant here! This means we don't have to pack up and move for Caleb to get the treatments he needs! I, for one, am so excited that we will not have to throw an unexpected move in to our already crazy lives! I mentally prepared myself for them to tell us we were going to have to move and that I would be ok if that were the case...so I was really happy when they said we could stay here!
We called KMC right after we left Tripler to pre-register Caleb there so we can move on to the treatment phase of this plan. There are two ways to harvest bone marrow from a donor. One way is very similar to donating platelets. They take the blood out of you (through a catheter), run it through a machine that selects out the stem cells, and then returns the rest of your blood back to you. The catheter would be put in and removed under a general anesthesia. This procedure was available in Oahu until just recently, when Hawaii's Medical Center closed due to bankruptcy issues. If this is the preferred treatment, the donor and one parent would be going to the mainland for a week or two to have the harvesting done.
The other way would be for the doctors to physically go in with two large needles (one on either side of your back in the hip area) and draw out actual bone marrow. The donor would be put to sleep and would end up with two tiny freckle size scars on their lower back and be a little sore for a few days. They said they are able to do this type of harvesting here on Oahu and that it would take a day or two to do it this way.
Either way, ten to fifteen days before the harvesting is done, the donor will need to have a shot everyday (for the 10-15 days) to make their bone marrow over-produce so there is enough to harvest. They said these shots would be similar to an insulin shot and would be with a tiny needle just under the skin.
The doctors didn't discuss the actual bone marrow transplant in very much detail (since KMC will be doing that part) but did say that it is very similar to getting a blood transfusion. Caleb will be getting a semi-permanent catheter line put in his chest before too long and this way they can do any future transfusions, blood draws, and the bone marrow transplant though this and he wouldn't keep getting stuck in the arm with needles. When everything is said and done, they will remove the catheter.
The tentative timetable for the actual transplant should be somewhere around late July or early August, but we won't know for sure until we get more of the pre-transplant stuff done. The doctors said time in the hospital could be a month or longer for the initial transplant and that after that, the average time for Caleb to start attending group functions (school, church, etc.) would be about 100 days. He will have to be set up with a home tutor and probably a hospital tutor to keep up with school once that starts.
So that is most of the news we learned today. I'm going to call it a great day and just keep taking it one day at a time. I am so grateful for your continued support and prayers for our family! We really can feel the lord's arms around us!
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