Sunday, April 26, 2015

I wanted to give an update, even though, really, there is not much new, but I know that you precious people are praying and maybe we can sort of boil it down to the best of my understanding and as of right now. Those are two important asterisks - “my understanding” and “as of
 right now.” My understanding is challenged because I don’t understand the science, the terminology, and many times the accent. And, if there was one consistency that has been with us since January 2012 it is that things just change fast and often. The other thing that I want to be clear about, and want you to know that is true across the board and at all times, even though I won’t say it over and over is that we are above and beyond taken care of. We have not run across a person at any level of service at MD Anderson that hasn’t been compassionate, helpful, interested,

and/or courteous. From the top researchers, doctors, nurses, all the way out to the parking guy that was speeding us through the gate to keep the line moving. We are being handled with the utmost respect and care, and we believe there is not a person giving less than 100 percent for Eli’s care, well-being and eventual treatment and prayerfully cure. We feel included as part of the team in this effort to change the course of childhood cancer. And, to be fair, if you have followed us long, you know our love for St. Jude, and we had the same experience there. So, it really gives us a sense of confidence in the genuine effort of people in the top tier of the industry fighting childhood cancer. I want you to feel that confidence, too, because there are a lot of negative statements and stories about the medical industry, pharmaceuticals, etc., and since people and money are involved, yes, there will be some selfish
We left a spot for our Abbey.
 stinkers out there. That is true for anything that includes the combination of people and money. But I truly believe, without a doubt that God has blessed our path to cross with some of the best in all aspects of the fight. I won’t constantly remind you of that, but know that is our backdrop.

The team met Friday and decided, first, to make an appeal to the internal ethics committee to start the process again, re-draw the blood for the NK cells. The hope is that maybe last time the blood was sample was drawn, Eli having the flu (which is plausible for when the blood was drawn that he could have been positive, he had certainly been exposed) may have caused the anomaly, or that just through a stroke of bad luck they grabbed a sample that was super concentrated with this extra
marker, which Dr. Lee said was a combination of cells that no one in the world has seen (that is just amazing and surreal. To think of the advances in medicine and knowledge of the human body over the centuries, and this little 10-year-old boy from Alabama has something that no one in the medical world of research has ever seen. It really underlines the awesomeness of God’s creation of the human body and that our own bodies may just be our tower of Babel.).

So, best case from this point is that the committee says “yes, start the process again” on Monday. They would draw the sample on Monday, hope that Eli’s cells grow fast again - only take two weeks to grow like this last time instead of the four weeks that was expected - hope the blood sample is
perfect, hope Eli’s MRI shows only slow progression (even though he has been off treatment since the first week of February) and then he have his first injection. If we get the yes on Monday, and the sample is drawn on Monday (this is tomorrow), Dr. Zaky is going to “hedge his bet” and not treat him with any chemo since Eli’s cells grew very fast this last time (again we have the small window for interim treatment). That is the best, everything is perfect, that can happen from this point. Technically, we are two weeks early because the cells grew fast, so to go another two weeks would just put us back on the original schedule, which was four weeks.

If the “yes, start the process again” doesn’t come until Tuesday or later, then the only thing that will change from the first scenario is that Dr. Zaky will put Eli on an interim treatment until the cells are ready. Then we have all the same hopes that the sample doesn’t have the same problems, and that Eli’s MRI is good to proceed.

If the answer is “yes, start the process again,” and the the sample drawn has the same problem. They are discussing amongst themselves and with the FDA whether it would be safe to inject him with something that they’ve never seen. The answer to that is likely “no” from them and us, but we would just have to weigh the reasoning.

If the sample is bad again, and the answer is “no, we will not inject him with an unknown combination of cells,” then they will put him on palliative care until we decide on another trial or we will just again be riding palliative for as far as it will go.

We will be picking up our conversations with New York’s Sloan-Kettering again, which are painful, but we need to be ready to go there if the sample is bad again. That trial is for a specific expression of cells, so it would be a long-shot as well even if we break through the wall we seem to keep hitting getting up there.

Eli and I were eager for the others to get here Saturday. He wrapped Caleb’s birthday gifts, and we bought Caleb a little Lego set to have when he got here so that they could do Legos together as soon as he walked in (Eli had been given a set from a local church group). We are having a great time celebrating Caleb’s birthday. Anything we do, we say it is for Caleb’s birthday, so we are cheating some. We went to the Cheesecake Factory for the first time ever, and then to Toys R Us for Caleb to spend his gift card from the Easter Bunny. Hg and I went to Nordstram’s Rack, which I think must be a discount spin-off or overstock, something like that. We didn’t really buy anything, but it was good for her to look around. You wouldn’t know it to look at me today, but I use to be (you know, before being married with kids and when I had a job) a big clothes and shoe shopper, any spare entertainment time was spent either shopping or playing softball. But, now, I do not have the patience or the money, so why spend the time. I do not and am unable to just spend a day shopping with her, even if it had to be window shopping. But, she and Abbey both really need that, and want to do that. The kids have gotten so short-changed in the last three plus years. We had signed Caleb up for baseball, but he was so behind in skill, and being literally the youngest in the entire league having never played, it was just dangerous for him to play. Having to depend on so many people to get him to practices and eventually games, I just did not like the idea of him playing without a parent there. He was an injury just waiting to happen, and I did not want that to happen without one of us there. So, we decided that we already had to depend on so many people for different things, we would just cut this out. Caleb didn’t care, and didn’t really notice. It’s a shame, I think he would have liked it, but maybe next year will be easier and he will be older. Hopefully, it won’t be too late for him to learn enough to be able to play next year, which is a sad statement for an eight-year-old.

We enjoyed worshiping with the Memorial congregation this morning. The members were very friendly, and we already knew a couple of people because that is where we are having Eli’s mail sent while we are here for now. We also went to a cool place for our first real taste of Texas Barbecue, and though the place was super cool, we were 3 out of 5 on what Texas calls Barbecue. I miss Lawler’s! But, now, Caleb, Hg and Vic cleaned their plates (and ours, too), and for Caleb to eat anything besides a peanutbutter and jelly is a pretty big deal. Afterward, we enjoyed some time at a huge downtown park where took a little train ride, walked around, tried to sneak up on squirrels, and watched some hapless paddle boaters run up under the water spout. Then we just came back to our home away from home hotel suite, made sandwiches for supper in our kitchenette and watched America’s Funniest Home Videos and The Muppets in Space (I LOVE the muppets).

Tomorrow is yet another big day. But, what day isn’t big for any of us, really? Surely by now, you precious people have gained the perspective it takes to appreciate your days.

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