Wednesday, June 3, 2015

(I'll add pics later).This is going to be a quick and check-list kind of update, just because … well, nothing new or different, but just because so many plates are in he air due to the regular chaos that we live in, including self-inflicted chaos, and the chaos of getting summer started while we hang in the uknowns, and just chaos of every day.

So, I’ve been waiting to update because there is not really much to update as far as Eli’s treatment. We are still waiting to hear from Sloan-Kettering, and really just don’t foresee that they are going to be very helpful in getting us there. I thought their effort level had changed, but nope. We had kind of realized that the reality is that we will need to choose either the unproven phase 1 at Mayo, or the somewhat understood phase 1 at Houston’s Hermann-Memorial that would kick us out of Mayo forever because of the 2 chemo regimen limit. So, that is where we stood last, and I, at least was agonizing over it because I am not full on-board with the methotrexate into the brain because there are some pretty hefty side affects possible, especially even debilitating cognitive issues. I have heard some that were not affected, and another that was. I don’t think he will be able to get but just a couple of treatments, so what is that going to gain or cost us - can’t know. Vic was pretty much decided, he wanted to go with Houston and did not want to risk anything on the completely never done trial at Mayo. So, he continued to pursue Houston, and I asked him to contact Mayo doc for questions so that he based his decision on what she said, and not what I said. So, he emailed her. The most interesting thing that we learned from that email was that they are going to be changing the requirement to allow for 3 past chemo regimens. Prayers are answered again, and again, God has lifted Eli up above the fray and carried him. So, the plan is to try the Houston trial - our first appointment is June 10… (yes, that is forever away, I was disappointed) …. which we think might work for a couple of treatments or so, get him stabilized, then my hope would be to go to Mayo as soon as we can (as soon as this treatment doesn't work or until his body can’t take the chemo). Another reason that Vic is not interested in Mayo is because it is a year long trial. That doesn’t bother me, (except for the leaving home, friends and family thing, people that love us and take care of us, that is kind of a big deal), I will move to wherever to know that we have done everything to the last drop of what we can, and I have witnessed God’s providential guidance, and I know that He will make it good for us and good for Eli and He will be glorified for all the blessings he continues to make me aware of every single day.

We’ve done some fun things recently. We got to meet our newest little cousin. The kids don’t really get to see babies, so they loved it. Eli loves babies, so he was thrilled…. it was hard to tell, but he was and was very excited to tell Vic about it. Lots of fun things shaping up with the non-profit, so very busy on that front as well. We have GOT to sell the house. There is no way for sure that Vic would move to Minnesota if we have not sold the house. We have a storage unit now, and I am working trying to get things sorted and moved before we go to Houston. Thank you for what you do for Eli in all capacities. You have God’s ear, and we are humbled every day at everyone’s effort to remember Eli.

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