Monday, April 27, 2015

The governing board at MD Anderson gave permission for the team to draw another blood sample for the trial, so he was at the hospital to have the blood drawn this afternoon. It amounts to half of what an adult gives for donating blood. It’s a lot for a kid whose bone marrow struggles anyway due to treatment and for one that is not the best at staying hydrated, but we anticipated it, pushed him pretty good to
drink the day before and this morning. We are thrilled to still be in the game, but time will tell if we actually get our turn at bat. So, the blood sample was drawn today, and went straight to the lab to begin the processing, the stripping down to pure NK cells and then the multiplying of the cells ten thousand fold, Dr. Zaky said. Even though Dr. Zaky had decided to go sans-chemo, he changed his mind. Knowing how aggressive this disease is, and now with the blood sample back in the lab for anywhere from 10 days to four weeks before it is ready (expecting two weeks), I think he just couldn’t do nothing. And, I was torn at doing nothing, too. His MRI at MD Anderson about three weeks ago or more, showed 10 tumors in his spine and brain. The scan in February shows seven or eight. Plus, with his spinal fluid being positive for disease, he just needed something to control it as best we could. He has to be off chemo for two weeks before the first injection, so that is the exact window opening provided by the cell preparation in the lab. He will receive intrathecal methotrexate and cytarabine tomorrow under anesthesia, the combination of which is known to be a band-aid for some. We only have time for one dose, so we hope that is enough to hold it down. We
 are not expecting much by way of side effects, but since he has never had these chemo drugs, and never received chemo this way, Dr. Zaky asked us to stay in Houston until at least Friday. And, if all goes well until then, Eli and I will come home for about a week since the brain surgery appears to be healing well. We will come back to Houston probably May 7 or 8th,  in time for bloodwork and preparation for the baseline MRI on May 11. We should know around May 8th if this blood sample has the same problem as the first batch. This would kick us out of the game. If it is good, then his first injection will be May 12. More stable housing in Houston is on hold, of course, until we know that this sample is good and usable. Eli’s first sample is being put to good use. Dr. Zaky was clear that neither the sample, or
 anything they learn from the sample, would be used for Eli, but that the researchers are taking advantage of seeing something they’ve never seen before. Surely, it can’t be often that doctors get to see something completely unknown worldwide. We are confident, and Dr. Zaky even said, that children in the future, even near future, will benefit directly from Eli’s blood sample. That is one of the big reasons why we are here, so it is nice to be told that we have realized that hope.

After the blood draws, we celebrated Caleb’s birthday, since they might be on the road tomorrow. It wasn’t a catered, thematic shindig with a big custom cake centerpiece and hollywood style entertainment as most kids get to have these days. It was just us making something happen, but that’s what it would have been at home, too. Caleb’s first choice was the children’s museum, but it is closed
 on Mondays, and after spending all afternoon at the hospital, time was an issue. Caleb was super-excited to hear us throw around the name “Chuck E. Cheese.” We only go once a year, in the summer, because the kids think they love it so much, but we did not go last summer as I usually do. He was beyond excited, and though, I personally, am not a CEC fan and feel like I need a bath when I leave, he was just elated. We grabbed a cake off the shelf at Kroger, some Pokeman napkins, lego candles, and a couple of balloons, and he loved the attention. The place was not busy on a Monday evening, and it was a decent enough CEC. It was small, and the games that gave tickets were lame, and the games that the kids wanted to play did not give tickets. I, however, always love a basketball shooting game, and played until my arms gave out, so I amassed quite a few tickets. We managed to win enough tickets that when the boys split the number evenly they got a plastic spider, pack of airheads candy, a swirly straw, a mini slinky, and a mini rocket launcher. So, today was a good day.

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