Boring Room?

UPDATE: 

• Spencer's ANC is still 0 and the docs informed us today that each round tends to get a little longer and that we shouldn't count on his counts rebounding as quickly as last time.  :(

• The appetite stimulant (that is related to marijuana, but apparently is not addictive and not a narcotic) is not working yet.  He's still eating okay, but it's definitely not the kind of munchiness they told us it would cause.  His weight is 56.5 kg.

• We took our trip to National Children's Medical Center today.  It's a longish drive in a somewhat unpleasant part of DC, the parking was insane, and the hospital hugely busy and imposing....but  members of the BMT team  spent over 3 hours with us, including a tour of the BMT unit.   It was comforting and disconcerting at the same time to hear everything about bone marrow transplants laid out before us like this, but we do feel like the care there will be good.  We still plan on touring another hospital or two, but pending anything earth shatteringly different at the other hospitals, we'll most likely stay at Children's just to stay close to home. 

• Spence got a packet of cards/letters from the Primary kids in our ward and this is one that made us smile...

Except Spence isn't quite sure what she means about being without his family, since he's had either a parent or aunt in his room almost every moment of the last 2 months...  :) 

                                                 *******************************

All the adversity I've had in my life, all my troubles and 
obstacles, have strengthened me... You may not realize it 
when it happens, but a kick in the teeth may be the best 
thing in the world for you.
 
- Walt Disney

Bone Marrow News!!!!

We've got two perfect matches, which means Spencer's getting a bone marrow transplant!!!!!

While the girls were all psyched up that they might be the matches, we were quite surprised when the doctor told us tonight that it is actually Cami and Adam who are the perfect matches.  According to what they originally told us, Adam wasn't even a low-resolution match. 

We don't know if they misspoke the first time, but the doctor went back and double checked the paperwork when I expressed my surprise and it was confirmed that Cami and Adam are the two official matches.  We'll be meeting with the transplant team in the next few days and they will help determine which one of them will end up being the donor. 

Since Spencer has the perfect in-family matches, rounds 2 and 3 of chemo will proceed here at Inova Fairfax Hospital, but after round 3 he will be transported to a transplant hospital (probably National Children's Medical Center in DC) and will receive round 4 there, which will include the transplant.    We hear that bone marrow transplants are rather horrible to go through, but since they offer the best chance for a long-term cure, this is all very, very good news! 

Bone Marrow Matching: Round 1 Results

We found out the preliminary results of the bone marrow matching today.  We didn't originally realize that  further tests would be required after these results in order to find the best match, but preliminarily the news was unexpectedly good. 

Spencer has four siblings and based on these first tests, three of them are perfect matches (thus far in the process).  The hospital said to have that many matches, even in this first step, is so unheard of that they double checked the results just to make sure. 

Even while they were gushing about how they'd never seen that many matches before, they were also quick to tell us not to be too relieved yet, since more extensive (and expensive) testing still needs to be done. 

We'll take what we can get.    

All three of his sisters are 6 out of 6 HLA matches.   

Random Facts about Bone Marrow Transplants

The preliminary bone marrow matching tests 6 HLA markers in the blood.  The remaining 4 markers  are much more expensive to test for, so they do the preliminary testing to weed out the number that move on to further testing.  All three girls will go onto the further testing.  The most successful transplants have 10 out of 10 matches. 

If an in-family perfect match is found, then round 4 of Spencer's chemo will be performed at Children's Hospital  in Washington, DC.  The chemo will be very intense and will basically destroy his immune system in its entirety before the transplant.  The whole process is expected to take about 2 months in the hospital and another 2-4 months of recovery. 

Bone marrow transplants are risky, but also give the greatest chance for a complete cure.  Having an in-family match maximizes the chances for success.     

A bone marrow donor can have a different type of blood than the recipient.  In this case, after the transplant is done the recipient often changes blood types to match the donor.

The bone marrow recipient will also often develop similar allergies as the donor, since basically their immune systems will be the same afterward.