Saturday, May 9, 2015

Thanks, to Mark Tucker and Adam Graves at Woody Anderson
Ford, Eli "entered" a 2015 GT in the Rocket City Mustang show.
Foot race competition is the oldest recorded sport with references dating to 776 BC in the ancient Olympic Games. The apostle Paul used sports metaphors often to make points when he wrote letters to congregations of Christians. In I Corinthians 9:24, he used a foot race as an illustration and he even references the “wreath” as the trophy. Hurdles were added to the track in the early 19th Century, and were part of the first official modern Olympic Games in 1896. A hurdle is an obstacle in your path that you must clear successfully before continuing along your path toward your goal. We’ve had many hurdles over the last three and half years with eli fighting brain cancer in particular. The hurdles are getting closer and closer to each other as I’m sure we are nearing the prize. We expect to hear final word from the lab on Tuesday as to whether Eli’s
Me driving the GT.
 Natural Killer cell population is acceptable to inject into his Central Nervous. We have heard today that the mysterious marker is still present, but is below the acceptable population percentage, which is under five percent. That number can still go up or down before the final product is frozen. But, because the mystery marker is still present, we have an additional hurdle, or an extended hurdle. The ethics review board is required to be in unanimous agreement for it’s decisions. Ninety-five percent of the board has agreed for Eli to receive the injections with the under five percent mystery cell population mixed with the NK cells. But, the holdouts want to know what the cells are, or at least what they are not. All agree that it is not the flu or caused by the flu. The leading possibility is that the cells are pre-leukemia cells. Leukemia
Eli shining up his ride for the show.
 is common to develop due to one or two of the drugs used in the first treatment. So, in order to satisfy the hold-outs that it is not leukemia (which they are just wanting to be as safe as possible for Eli, and they want to protect the findings of the trial), Eli will have a bone marrow biopsy Monday. We will learn the results of that test Wednesday. If the results are negative, then he will have his baseline MRI on Thursday. If he does not have significant disease progression, he will begin treatment Friday. If the results are positive for pre-leukemia, then we are done. In review: If the mystery cell population increases beyond five percent, we are out. If the cell population stays below five percent, he will have a bone marrow
Mr. Meadows had the plaque from Eli's show in his car.
 biopsy Monday to rule out that the cells are pre-leukemia. If that test is negative for leukemia, we will proceed with an MRI on Thursday. If that MRI shows extensive disease progression, we are done. If he has leukemia, we are done. So, still a couple of hurdles to clear, but this is research. The trial is for relapse medullo. They know that they are not getting fresh kids. These kids have already been taken to the point of death with their treatment, and reeled back in before it took them. So, their bodies are toxic and tired.

As far as this week, his immune system has improved, but his platelet count continued to trend downward. He has had nose bleeds all week. This seems to be a surprise to Dr. Zaky, the oncologist
Caleb likes the old cars. He and the precious grandpa that owned it
bonded. Caleb bought a toy just like it and wanted to show him.
 at MDA, for the methotrexate given intrathecally to cause any issues with his chemistries. So, that is a bullet-point, nothing that really effects anything more than just being interesting to note and consider as decisions are made. More chemo was mentioned, but we are not clear as to why since he has to be two weeks from chemo to begin injections, and as of right now, if we clear our hurdles, Friday will be the first opportunity for the injections.

We plan to leave Sunday for Houston. I will only be packing for a week. I don’t have a lot of hope that this is going to happen for Eli now. Just a gut feeling. If I’m humbly surprised, and shamed for
 my weak faith in trying to guess God’s plan, then I accept that shame and ask forgiveness. But, I fear that he has already made his contribution to childhood cancer research. Leukemia has always been in the back of my mind for down the road just knowing the poisonous levels of that first treatment and how it beat on him. I know God’s got the wheel, but I really just want to be able to see over the dash.

Eli is in good spirits. Seems a little low-energy, but how can you know, really. We have had a busy week at home. We went to the St. Jude clinic every day but Thursday, had well-checks at the pediatrician, all had dentists and one braces
 appointment, and two of my own appointments just in case we do stay for 3 months. It is nurse appreciation week, and we do so much appreciate our nurses. My sister made stethoscope covers for all the nurses at the St. Jude clinic in Huntsville for Eli to give, so that was fun. We really wanted to do something, but just hadn’t had time to put much thought into it beyond our usual Dunkin’ Donuts. So, he enjoyed taking those to them. Since Eli missed his car show, I saw where the Rocket City Mustang club had a car show this morning. So, we borrowed a Mustang GT convertible from Woody Anderson Ford, in Huntsville, Alabama, for Eil to “enter” into the show. Just something that he could pop the hood, and sit with some of our local club members. It was a great show, and he enjoyed
Some of our nurses at the Huntsville clinic.
 getting to be a part of it. We got to meet in person Jerry Meadows, who owned “Eli’s Choice” from Eli’s Block Party. Since Eli was in Houston and could not come home, I facetimed with him and walked around for him to look at the cars. Mr. Meadows seemed to be touched that Eli picked his car, and today he even still had the plaque in the car. I was glad that we got to get a picture. The girls and I are going to be enjoying a generous gift from friends that will give us a little girl time today to play before I head back to Houston. Something fun to share. When we were in Houston and I realized that we were going to be there for a while, I bought groceries, some clothes, and other things and put a pretty big total on it a few times.
 Well, the credit card peeps kept flagging it, four times. Which is fine, I know the reason - we never travel, so a red flag when you see my credit card making its way down the interstate spending big sums at Target. But, I kept having to call them to reactivate it. So one time, I was small-talking with the operator, spreading awareness about childhood cancer (it’s not rare because you just talked to someone who has a kid with it). We wrapped up, it wasn’t a super long conversation. When I got home, I had two bouquets of these tulips from the operator. People are good, and they want to do good.

We will keep you all updated as we know things this week. Thank you for prayers and for sharing Eli’s story for prayers.

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