Wednesday, June 15, 2016

Eli in his new size 12 pants!
June 12:

/skaN zīədē/
a feeling of worry, nervousness, or unease, about an imminent imaging appointment with an uncertain outcome.

It’s a made up word, but one that is used regularly among cancer parents as the time approaches for MRI checks. How a kid with medulloblastoma - maybe all cancers, not sure - looks or seems to feel is no indication of anything as far as what the scan might show. There are kids that have great color, eat great, no symptoms, and then scans show the cancer has returned, or has progressed. And there are kids that have had headaches, even seizures, nauseated, but their scans be clear. It’s hard to keep from trying to cheat for answers based on Eli’s current outward presentation, and think that his scan Monday and Tuesday are going to be “fantastic” again, as they were at the last scan two months ago. He and Vic left this afternoon for Augusta, Georgia, for the scans and check-up. I didn’t go this time because the other kids have things during the day Monday and Tuesday, and in order to juggle it Vic was going to have to take off work if I went to Georgia. Though he is a champion daddy, to multi-task with the kids going here and there for this and that, is a challenge. Since he had to take off work either way, he went with Eli, easy simple, and I am staying at home with the others…. pacing the floor, and packing on pounds under the stress of major scanxiety.
The little tree on a roof.
 He has been having such wonderful days, really. And, looks wonderful. He has gained weight, and I even had to graduate him from the size 10 church pants that he has been wearing for the last five years to a size 12 dress pants, and they fit perfect (except the length). He has yet to hit the nadir from this round of TMZ, so when he had a count check on Friday, his blood counts were great. The director of the St. Jude satellite clinics is based out of our clinic, and is one of Eli’s original local oncologists, and was in the office on Friday, so we got to see her. She still seems so genuinely amazed at him, and always takes time to talk to me about the trial he is on. She is now on some kind of pediatric cancer national task force, and she said one of the group’s top priorities is “fast-tracking” meds/treatments from adults to kids. So, I dare to pray that Eli’s earthly healing has been postponed these years, and that his little body has battled to stay in this exhausting and costly fight for what we find out tomorrow afternoon. I had been fairly in control about the scans, pretty relaxed about it until late in the week he started having some regular nausea in the morning, then again at night. So, now, that shot the scanxiety out’ the roof!
Speaking of roofs, someone asked about Eli’s tree on the roof that he talked about in a little church talk that he did for Lads to Leaders, and at a couple of other places. It’s still there, and it’s grown! How wonderful is that.

Vic and Eli have been hard at work on beefing up Bruce, so they are both excited to be adding a supercharger, and some peripheral parts to bring the horsepower up to something under 700, I think. And, they are considering just some fun, subtle changes, like painting some parts under the hood while the engine will be out.
It has been smothering hot here, and even though steam rises off of me everywhere I go, still it can not compare to Houston. We have Houston to thank for so much! If I dare complain about traffic - “Well, it’s not Houston”. If I dare complain about heat - “Well, it’s not Houston.” If I dare complain about distance to Augusta - “Well, it’s not Houston.” Ha!! Experience = Perspective. I did like Houston, actually, I think because our apartment was so awesome, in a super location, we enjoyed the tiny congregation that worshipped with, and the very tiny parts that we dealt with - Pearland, and the Medical District - were great. Still, it makes me appreciate my own home!!
Eli's add-ons for Bruce.
If you are in driving distance to Athens, please join us for our fundraiser for Emma Clark, June 21, 5:30 p.m. to 8 p.m. at the Duck Pond Park. Even if you don’t have a car, come get a hamburger, and ice cream, and hang out with us.

June 14:

Please, take a moment today, to thank God for His hand on Eli and for being in control of His plan for him. We give Him the glory for Eli’s progress driven by the knowledge, skill, diligence, and care of medical personnel that He guides and leads. Eli has gone from 18 tumors when we started in March, to only nine (weird to say “only” nine, but success is relevant to where you begin), and he has no
Eli burns me up wearing long sweatpants,
long-sleeve shirts, and a winter hat in the
house, especially here where the very hot
summer sun streams in.
leptomeningeal disease present on imaging any more. All lesions are either stable, shrunk, or gone. That is phenomenal progress for a kid who was sent home on hospice three times, given six weeks to live 10 months ago, and has been rejected from participating in trials because the researchers felt his disease burden was too great. Closed doors and obstacles are part of God’s way of guiding us down our path. We still can’t know that radiation might be playing a part in this success, radiation is good for about three months with the biggest benefit coming one month after radiation, so we still have another month to kind of reap the benefits of it, but we are humbly thankful for the success so far no matter what is driving it. There are still nine lesions, and leptomeningeal disease is likely still present, just is not thick enough to be detected, so I ask that you please continue your diligent prayers that Eli’s little body be able to handle the chemo that comes with the experimental drug for as long as he needs to, and that the treatment continue it’s affect on the disease, that it not retaliate. This is him waiting on his spine MRI, which has yet to be reviewed, but it was clear the last time, I think. So, a LOAD off of my mind for today! I’ve been busying myself with house chores. The girls and I rented a pressure-washer, and cleaned some chairs, the sidewalk, playground sets, patio. I took the nail polish off one of my big toes with it, so I think I may need to go get a pedicure! That sounds perfect.

June 15:

Emma passed away yesterday morning. I originally had the news in my post about Eli, but quickly removed it because I didn't realize the family had not announced it yet. I am around this so much now, that any words seem so redundant. How awful is it that to speak of a child dying is redundant. The Orlando shooting of 49 people (I think the number may have grown) was horrific by any measure, but please realize that 46 children are struck by a killer, newly diagnosed, every day. Named by the National Cancer Institute as the number one killer of children by disease, is cancer. Emma was one of six or seven that died yesterday at it's hand. She was a soldier, a pioneer, a light for Jesus, and a sweet, innocent child. 

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