Tuesday, April 7, 2015

I wish I had time and talent to write something eloquent and memorable. Something weighty and deep, befitting of the unexpected and expedited events of today, but I’m still mentally and emotionally processing what is happening so fast. And, I’ve got to get to work on logistics for our family, so here it is bluntly: Eli was accepted and enrolled into the “NOAH protocol” today. The team had reviewed his history, and the MRI from yesterday already. So, the neurosurgeon, Dr. Sandberg, whom we had an appointment with on Thursday and really one of the drivers of this trial, came over to our appointment with the oncologist today to examine Eli in person. After which he let us know that he is a candidate for the trial. He was not concerned about the shunt. He said that his pressure was the most normal he had seen in a child with a  shunt. He believed that he was no longer dependent on the shunt, so the pressures never gets high enough to flush.

Technically, we still have a few days to commit, but we really see no other path. Dealing with Sloan-Kettering is painful and painfully slow. Even if they called tomorrow and said they had everything they need to set up appointments with Eli, the soonest possible for them to see him would be the end of next week. And, that is still far from getting him tested for the genetic marker required for that treatment. Dr. Sandberg wants Eli’s white blood cells harvested Friday to begin growing the NK cells, then do Eli’s surgery Monday morning to insert the catheter in his brain. So, we thought we were coming home on Friday, but we will begin the first step of the NOAH on Friday and prepare for brain surgery on Monday. Those that know can correct me, I was trying my best to stretch my brain and understand it all in the meeting, but I believe this will be the first time anywhere in the world that natural killer cells have been injected into a human’s central nervous system. Eli, as of right now, is literally the first one on the trial. Dr. Zaky and the nurse, too, were very impressed and excited to see how quickly and cooperatively our insurance responded. (How blessed we are that Vic studied hard as a young man so that he could get a good job that is at a good employer with good benefits for its employees). So, our little, quiet, unassuming Eli from a small town in Alabama, who is content with no attention except from his daddy at home, will be making childhood cancer history - to use MD Anderson’s pun slogan. I remember during his first treatment at St. Jude, something happened, I can’t remember what, and our oncologist said something like, “This is new territory for us.” I said to him many times, and said here many times that we didn’t want to pioneer anything. I guess God had a different idea, or the “n’t” dropped off somewhere in my prayer. “I said NOT… NOT pioneer, there was a NOT!”

We are in business mode, and I can’t really process it all very deeply yet. I am very concerned about the surgery, probably more than I am about the NK cell injections. We are facing what we faced back in January of 2012. Eli might not be Eli as we know him coming out. He may not be able to walk, or walk without help. He could lose full-function of one side of his body. He could have trouble talking, he may have vision problems, more cognitive issues. Any time the brain is being invaded, the gray matter is moved around, blood vessels are broken, and especially a foreign object being permanently inserted, issues just can’t be avoided. We were amazingly blessed with his first surgeries, and many, many times other parents, doctors, nurses have commented on how well he looks physically compared to what is often the result of tinkering with the brain. So, please, prayerfully plead for his recovery from this surgery, and for our peace in allowing it. Dr. Sandberg assures us that the placement of the Ommaya is his thing. He has incredibly impressive credentials. He was very nice, took a lot of time, came two days early over to the clinic where we were, seemed very proud of this trial, it seemed personal.

The four-hour surgery will be Monday, and he will recover for a minimum of four days in the hospital. They want him to stay in Houston about another week just in case there is a problem, Dr. Sandberg wants to be the one to deal with it. After that, we are unclear if we can come home for about a week before starting. The cancer is growing. The MRI from yesterday showed that there is progression, but it is minimal. One of the many risks for this trial is that while the patient is waiting on the NK cells to grow in the lab (minimum four weeks), the cancer is growing out of control. So, what kind of treatment can he endure during that interim. He’s had almost every traditional chemo there is for medulloblastoma, except methotrexate. That chemo has shown to affect the growth some, but not wipe it out. We have heard mixed input about side affects. So, Dr. Zaky was going to make plans for Eli to receive methotrexate intrathecally - through a catheter in the spine. However, - I am hesitant to ever use “good” or “excited” or “thankful” in dealing with all of this because we are quite heartbroken - the good news is that since it appears to be growing slower than normal, and since there is a small window through which to give chemo (there is a two week wait for chemo to leave the body before starting the injections), Dr. Zaky is not going to do any chemo. I am so thankful!!! I was really dreading that for him. So, he will just need to heal strongly from the surgery. Pray that the disease continues it’s slow growth rate, so that the disease-burden is not too great for the treatment, then he will be in good shape going into the injection phase. Since he is in the first group of the trial, he will receive the least amount of NK cells injected into his brain. Is that good or bad, who knows, the trial will tell. And, I want to stress that this is a phase one trial for the purpose of finding dosage and efficacy of nk cells being ejected into the central nervous system. It is not really expected to cure him, although we are so deeply prayerful that curing him will be a spin-off success of the trial. This is a straight-up lab-rat, experimental, cutting-edge, out-of-the-box, no-where-in-the-world-is-doing-it-like-this treatment and Eli is part of it.

It’s all very surreal. I can’t believe I left home Sunday and won’t see the kids for three weeks, maybe more. I am very sad about that. I didn’t become a mom to be separated from my family that I chose to have! I hate cancer and I hate its master.

I’m afraid Eli will miss the car show, which is so, so sad to me. It is really going to be great, and of course, with his prognosis, I was hopeful for it to be a memorable event for our family. I wish we could figure out how to put up a big blow-up jumbotron and facetime with him during the car show. How funny would that be to see his little face all huge and somebody walking around with their phone looking at cars. We will facetime with him ourselves so that he can pick his winner, and he would be very boring in jumbotron size. I will likely come home the day before, and then come back right after it.

We are moving forward with getting the house listed. If we can get it in shape to show, that will be up soon.

As I said, we are in business mode and things - big things - are moving fast and need our immediate and focused attention here and at home. I have had many beautiful offers locally for assistance, contact, visiting, going to eat, to church, other things - all things I would love to hang-out and do. But, we just can’t do much of that right now. We were given two days off (tomorrow and Thursday), so with Eli’s surgery coming up, I really want to do the things he wants to do, and try to work in narrowing down long-term lodging for the six of us. Eli has asked to go to Toys R Us to spend his gift card from the Easter Bunny gave him, and I would like to go to church tomorrow night for which we have an invitation. Since he is going to miss his car show, I may take advantage of an invitation to a car show Thursday, but it will be a quick visit as it is kind of late and he has to be at the hospital early Friday. And, I actually have cousins that live here, or near hear. I know, right?! I’m hoping that once he has healed from surgery that we can visit them. Vic is going to drive down, leave the car with me so that we can turn in the rental, and then he will fly back.

So, that was today. For those at home Melissa is once again, sort of my proxy, as my sister now has the full-out brunt, double-burden of taking care of mom, and preparing mom’s home for sale soon.

I want to close with Eli’s speech for Lads to Leaders. It is adapted from one of my own blog posts from a while back, but it is in a form and using words that easy for him (except existence, he kept saying extinction). It is a simple, encouraging message for anyone, and fitting words for him to share.

“In downtown Athens, near the railroad track, stands a building with chipped brick, busted out windows and a rusty tin roof. The loading dock of the business that use to be there has long been boarded up, and the road leading to it has been weathered to gravel. Poking up from the tin roof is a crumbling brick chimney and beside it grows a tree. Yes! a tree is growing on the roof.

That’s what I call “Blooming where you are planted.” Most people think that saying is in the Bible, but it isn’t. However, it is a Bible
principle and an attitude that I think God wants all of us to have.

In the book of Esther, a jewish teenager named Esther lived with her people in exile in the land of Persia. She was orphaned and raised by her cousin, Mordecai, who worked as a guard for the Persian court.

The king wanted a new wife and summoned for all the young women of the land to come to him so that he might pick one. The king chose Esther to be his queen, not knowing that she was jewish. Esther did not want to go. She loved her family and her people and wanted to stay with them.

After she was queen, one of the king’s men, Haman was mad at Esther’s cousin for not bowing down to him. He wanted to get even, so he tricked the king into making a law that would kill all Jewish people on a certain day. Mordecai told Esther about the plot and told her that she would have to tell the king so that he would stop it and her people would not be killed.

She was very scared to do this. There was a law that the king might have you killed if you came to him without asking, but if she didn’t tell him, then she and her people would be killed.

Mordecai encouraged her by saying in Esther 4:14 “who knows but that you are here for such a time as this?” Her cousin is telling her that she may not be in a place that she wants to be, or doing something that she wants to do, but God may have lead her to be in that place, so that she could do something that God needed done. She needs to bloom where she has been planted.

We are placed along the timeline of existence for God’s will to be done, which is for all things to come to him. It doesn’t matter who you are, or how old you are, or where you are, or what you are doing, if you will do what God has put in front of you, He will make the thing he is asking you to do work for good.

I am 10 years old and I am fighting brain cancer for the second time. Going to the doctor all the time is not fun. Getting medicine that makes me sick is not fun. But, I know that if my family trusts God, He will use everything we are doing for good. Just as Mordecai said to Esther, who knows but that I am here for such a time as this?

Who knows but that you are here for such a time as this, so that you hear me, just a kid, tell you that you can do the thing that God is asking you to do. God used Esther, just a teenage girl, to save his people from whom Jesus would be born and save us all.

God is the gardner of that little tree on the roof. It will not grow very big like most trees do to provide a home for animals, or strong
lumber for buildings. It will not grow beautiful flowers for anyone to enjoy. Because its roots are shallow, it will not live very long on that roof to make a noticeable impact on it surroundings. But, that seed found the good where it was planted and used it to grow.

God has a plan for that little tree and it will be for good. God has a plan to use me for good, and he has a plan to use you for good, but we have to bloom where he plants us.”

If you want to learn more about the NOAH trial and NOAH's Light Foundation, check out this link. http://www.noahslightfoundation.org/visionary-research/applied-cell-therapy/

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