Wednesday, May 27, 2015

I’m not sure if I’m repeating. My days repeat, so there’s a high probability that if I journal my days, I will repeat something. When we were in Houston awaiting the MD Anderson trial, I was contacted by a mother who lives just probably 30 miles or less from us in a nearby city. Her son, Jordan, was the first kid to receive the Omaya Resevoir in the fourth ventricle as part of the MD Anderson pilot trial to determine the safety of doing so in order to open the NOAH trial which required it. The hope was that Jordan would have the Omaya as part of the pilot and then be ready to go when the NOAH trial opened. It took too long to open. While the government made sure everyone on the payroll had something to do with getting it opened in order to justify their job, Jordan’s cancer grew. It grew faster than people could push paper. Jordan, at the age of 20, died Sunday. He had been fighting medulloblastoma since he was 11. He had five years of remission during that time, but the monster is rarely ever gone, it just hides and sleeps. By the time the NOAH trial opened, his disease burden was too great for him to participate in the
trial. That is how they term it, “disease burden”, and it is an understatement. He had more disease than they wanted to tackle. He had a risky resection in March, that really didn’t buy them anything but bills, and then there was nothing left to do. No trial anywhere would tackle his “disease burden”. It grew, and torturously murdered him from the inside out. He had endocrine issues due to his history of treatment that put him in the hospital about two weeks ago, and he never came out. I never met him, have not met his mom. But, from her testimony, he was a light to the world for his Savior and Christ, Jesus. He was a pioneer in childhood cancer. Because of his contribution, Eli has an Omaya and may have a choice we wouldn’t have if he didn’t have it. It’s not my favorite choice, and it is another band-aid, but still it is a choice which Jordan didn’t have. How grateful I am to him and his parents for being willing to participate. Pray for his family, his mother Kathy. I can tell from my few conversations with her that she has been a warrior at his side. My heart is heavy for her tonight.

I do not have much to update as far as Eli, but you might can sense my growing hatred for paperwork obstacles and the people that make paperwork obstacles to accessing potentially life-saving treatment. Mayo is ready for us, their door is open. But, it is last on Vic’s list because - unlike when we were open to being first on the NOAH trial in March - Eli’s “disease burden” is unknown right now, but it is guaranteed to be greater than in April when he was last
scanned. Time is not on our side any more. If the Mayo study didn’t work at all - which we would not know for a month or so and they have never done it, so there is no data on it - we can’t just back up and go through another gate. Where we plant our foot next will be the last step we take. So, the simple trial in Houston is becoming more desirable because the door there is also open, and the doctor knows that there will be tumor response. It will not go away, but it will respond. We figure that because Eli’s body is so tired, he will likely only get one or two rounds, so, I am also wondering, how much good can that really do then. And, if we do the Houston trial, that will knock him out of ever signing up for the Mayo trial because there is a two chemo regimen limit. This Houston trial would be counted as number three - I asked.

So, New York, as far as we can tell does not have that exclusion, but since we can’t get past paperwork, we can’t ask a doctor to decipher anything for us. We did learn that the pathology slides arrived today, but there are some complications with them, which I won’t go into yet. But, we just keep praying that we will suddenly have a breakthrough there, but it is taking so long, I think we may have to go on to Houston to stabilize him. As soon as we plant a foot, I will let you all know.

We have not done anything very exciting. We stayed at home the entire Memorial Day weekend. We had some fun things we could have done, but we had some chores (finally got all out of my mom’s place) and the kids were enjoying just playing video games without me on them to get off. That is something that all four of them can do together. Plus, I anticipated, and continue to anticipate that Eli will be whisked away, so I just thought that he should stay home as much as he wanted to. We had to go to the St. Jude clinic on Friday, just to check labs. He was complaining about his side hurting, so they did a CAT scan to check the shunt and things, but he looked fine and hasn’t complained since. We played with a robotics team today, and Eli got to drive their robot Vera. Other than that, we are home, the kids play video games, and play together upstairs. In one of the pictures, Eli has built a Ford dealership for Caleb to come buy cars at, or drop cars off at, etc. He looks good, and seems beautiful. It makes it really easy to enjoy denial.

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