Saturday, September 24, 2016

A couple of weeks ago, I was chipping away at the mountain of laundry in our room, trying to actually put things away instead of leaving it in a pile for the “Dig and Wear” game. I was darting around upstairs, in and out of the rooms, when I noticed a quiet, intermittent, humming noise. I followed it to the bathroom, and it was Eli quietly singing, and humming as he took his shower. His voice is not strong, and his lungs can’t push air for more than a couple of seconds, but I
thought to myself, “This is a kid with cancer.” On his brain no less, and multiple lesions, too. He is a walking testament to God’s existence.

It has been an incredibly busy couple of weeks. We are in Augusta tonight, having had the first of two MRI sessions done this morning in anticipation of checking the one tumor that showed progression last month. Results will be Monday.
We had a great Superhero Day for childhood cancer awareness earlier this month. The community event is a fundraiser, and an awareness effort by our foundation. We had over 2,000 people visit, and have received a lot of positive feedback for the event. It is a time drain to organize, with a lot of spokes in the wheel. But, the right players are falling into place that
Captain America and Harvey Two-Face
 are accountable, and interest in sponsorship is growing because those players do such an awesome job at their task. So, I expect preparation and organization to get
Superhero Day
 smoother, and easier. We already have some fun plans to add to next year. Vic was Captain America this year, and Hg participated as Honey Lemon, one of the Big Hero Six characters so that she could be the escort for our Baymax costume. We had a special guest,
Eli went as War Machine for  Superhero Day, and wore it to clinic.
who is a movie make-up artist,  come to create two villains for the event, and it was fantastic. She is another cancer mom from Birmingham who lost her young son earlier this year to brain cancer. You may remember me asking for prayers for Quinn, so this was his mom Tara. She was a big attraction, and I was so thankful for her participation, I hope that she enjoyed being involved. I don’t have a ton of pictures because I am pretty busy during the day, but I have stolen some to post. There are still Superhero Day shirts available at Suzanne’s Bakery. There is no date on the shirts, so it is more of a childhood cancer shirt, than an event shirt. We still have all sizes, but adult XL and L.

The next weekend, I was supposed to be at a youth retreat with Abbey, and we did go to it, but had to come home that same night. I thought Abbey was having a seizure, but she fainted from dehydration,

Some of our fav nurses and doc at the ST. Jude clinic.
and her body stiffened and jerked in an effort to fight the unconsciousness (making me think it might be a seizure, but I have never actually seen one). I am terrified of potential seizures just because it is a possibility with Eli, although he has never had one. She was embarrassed (we called 911, part of my trigger-happy reaction to medical emergencies), and the doctor told her to rest out of the heat, and drink tons of water. We were headed to the beach a day later, so we took that advise and didn’t go back to the retreat, and she was much better by Sunday. This happened back in January, too, but I wasn’t with her when she collapsed in the bathroom, so I had not seen her go through it. But this time, she came to me when it was happening, so she is recognizing when it is
 coming on, and has time to lay down on the ground, if she just will. Hopefully, though, she will learn to drink, especially since she was so mortified at the episode in front of her friends. If nothing else, it will shame her into preventing it, if dehydration was the only cause. We are having some blood work done next week just to make sure she is not anemic, or iron deficient, and we may have an EKG done. But, I am anticipating that she is just highly-sensitive to dehydration mixed with heat.

We left for the beach on Sunday, and came back on Thursday, so that Eli and I (and Abbey) could leave for Augusta on Friday to be ready for the MRI first thing this morning. We could not have had
more perfect weather if I had of run the weather switchboard myself. It was a green flag every day, and the water was clear each morning - Hg and Eli were very excited about that, and it
seemed to satisfy their hope. We only had three days, and did the beach every day, with one afternoon going to a movie. We worked on school work while we were there, too. So, that was it, and it was wonderful. It was just what the doctor prescribed for all of us. On the way home, we stopped for Caleb to see the Capitol building in Montgomery, because he had studied about it in school, but it was closed when we got there. I’m so glad that we got the trip in before this MRI because things might
get crazy the next couple of weeks depending on what it shows.

Please, remember Josh, who I have mentioned before. He is the number three on the trial behind Eli, and Coulter (although technically, because of Eli’s delays early on with the chemo, they are on the exact same cycle, I think). He started having some worrisome symptoms this week, so they are also here getting an MRI. Coulter, the number one on the trial, had progression, so he was removed
from the trial and is on a compassionate use of the drug with a different chemo combo. If Eli shows progression of just the one tumor, he will have surgery to remove it, and continue on. If
Caleb had been studying about our Capitol, so we drove by it.
more than the one tumor is now progressing, he will likely follow suit with the change in the chemo and compassionate use of the experimental drug.

We’ve got a car show in Florence at McFarland Park October 15, but I don’t know if Eli will be ale to make it yet, and we will do Coffee for Cancer at Suzanne’s Bakery again on October 21. September will be over, but kids are still fighting, so, so are we. Here is a little video of Eli playing frisbee in the yard at home. It's not very exciting unless you understand the significance that he is able to do anything.