Thursday, February 7, 2008

Children's Parade

Day +252

As promised here are the blood counts from our latest trip to MDA:
WBC 3.4 K/uL
RBC 3.79 M/uL
PLT 402 K/uL
HGB 12.4 G/dL
ANC 1.96 K/uL

As for the other tests the preliminary results from the BMA were 3% blasts and it looks like Ann's new marrow is starting to kick out an increasing number of lymphocytes. That's good news because after treating the PTLD/EBV with Rituxan the number of circulating lymphocytes in her blood dropped to about half of what it should have been. Since then the number of circulating lymphs have been on a slow and steady increase. In a sense looking at the results from the BMA is like peeking at the factory floor and it looks like the baby immune system is tooled up to make up for lost time and resume normal operations. Of course these results are preliminary and the next chimerism test (PCR) and flow cytometery are still due. However, Dr. Kebriaei is very confident that we are moving in the right direction, but more on that later.
Speaking of PTLD/EBV it looks like it is toast. The high contrast CT scans have revealed that all the tumor masses and enlarged lymph nodes have dwindled down to the "sub-centimeter" range and are classified as remnants. Ditto for the abdominal lymph nodes. Our information about the amount of Epstein Barr Virus in Ann's blood lags a month because of the testing required. Last month it was below the detection threshold (200 copies/uL) and that is not expected to rise with this months sample either. Considering how scary was during the PTLD/EBV scare in October I could not be more pleased. Hurray!
Lastly we are still waiting to see what Ann's last lumbar puncture shows. This was the last one of a series she was getting with chemotherapy to prevent a CNS relapse of leukemia. For those who don't know the central nervous system is almost like a micro-environment, isolated from the rest of the body, in which cancer cells can grow, very rapidly sometimes. There they can avoid being harassed by the new immune cells, which don't normally enter the CNS in large numbers. Thankfully MDA has not identified any malignancies in her spinal fluid to date, and they don't really expect that this one will be any different.
So with the tests and medical stuff out of the way I can fill in some of the gaps that Ann didn't get to share with you loyal readers yesterday. First was the the Mardi Gras parade that MDA threw for the children getting treatment. The parade spiraled from the top of the Clark Clinic to the lobby and then back to the children's ward on the 9th floor of the hospital. The parade started with the UT Police, then a Jazz band playing as load as they could and then a procession of all the kids, their brother's and sisters and parents. The boys all had on festive masks and the girls had their faces painted. All the Doctors, Nurses and MDA Employees lined the hall ways and handed out candy, beads and doubloons to the kids. Both of us had a hard time not tearing up. Especially, when the little girl in the blue hat, riding in a little wagon smiled at us and held up her treasure for us to inspect.
I'll refrain from expressing how unfair and random I have come to believe life is and simply say that I hope she gets to live the long and happy life that all of us take for granted. I hope all of those kids do.

Next up is a favorite of mine. When we drive to MDA we normally park on the upper levels of the clinic parking garage for two reasons. First MDA is so busy that you can't hardly ever find a spot on the lower more convenient levels. Second because everything is bigger in Texas...except for the parking spots. I have seen some very determined people on the road to a trip to the body shop, because they where absolutely sure that a 6 ft wide spot spot was plenty of room to try and jam a full sized Ford F-150 pickup into.

Each and every time we park on the upper level (regardless of day or time) there sits a very lonely red Ferrari Testerossa. It's always in the same spot, but doesn't look like its collecting dust so it obviously has an owner. I can only marvel at his or her tenacity at driving a $200K super car each and every day to MDA through the obstacle course of road construction, parking bumps, crazy taxi drivers and Houston pot holes. Although I suppose it is equally possible that the initial drive to MDA was so nerve wracking that the owner has given up leaving and now elects to just garage it there rather than risk damaging it on a return trip home. In my younger days I would have thought that seeing one of these cars in the "wild" was impossibly cool. Now I think about the all interest that the owner could be earning if he/she had settled for a more practical alternative (like a Lexus or BMW) instead. I must be getting old...sigh.

One last thing. We got approval from MDA to travel. Dr. Kebriaei is now confident that Ann's immune system is strong enough to be exposed to the public in limited circumstances and with precautions in more crowed surroundings. Translation: It's OK to go out to a restaurant when it's not busy and it's OK to fly, if she wears a mask. This means we can finally get to visit our friends in New England without whom we never would have made it this far.

See you soon!

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