Friday, December 23, 2016

The kids at the dinner.
December has been very busy, and it’s not even Christmas yet! On the heels of the parade, and Eli’s birthday and birthday shopping “spree”, was a field trip with Caleb’s class, our
Eli's birthday #1.
non-profit’s EOY benefit dinner, then Augusta for scans, then Eli’s birthday party with friends, and the MAW donation trip. Oh, and wrapping up the mid-term for school, and Santa prep.

Eli’s scans were good enough to get me through December - his birthday, diagnosis day, relapse diagnosis day, Christmas, and the New Year turn. He has no new growth (keep in mind it’s only been a month since his last scan), and all lesions are stable, except maybe one, and it’s hard to
Shopping spree succss!
know if it is true growth, or just the difference in the tilt of his head from scan to scan. All tumors are so small that he will be sedated from now on, so that none get lost in motion artifact on the scan. It’s not bad news, so we consider it good news. There is clearly a “stand-off” between this treatment and the cancer cells in Eli’s brain, so something is
happening, we are just prayerful that the treatment takes the upper hand soon. Until his body says otherwise, we are continuing on as is, and will scan again in February. Eli is currently the longest on the trial. Patient number one (ependymoma) showed progression back in the late summer, and pulled off the trial to do a modified version of it under compassionate
use. So, he is pioneering his own path alone now. Patient number three, Josh with glioblastoma, passed away last week, and I am sad every day for that family, and think about his mom Paula a lot. I think I have mentioned that our foundation will be working toward raising money for Dr. Johnson’s lab next year, so he recorded  a short video about the immunotherapy program that he is growing at the Georgia Cancer Center at Augusta University. Watch and share the link:

We drove to Birmingham Wednesday to deliver 6500 Santa letters to Macy’s Department store as part of its “Believe” campaign that benefits Make-a-Wish. Macy’s donates $1 per letter up to $1 million to MAW. Our non-profit had initiated a collection of the letters since we don’t have a Macy’s in our area, and we are
deeply fond of MAW - our favorite non-research organization. I had Hg count the very few that we had picked up, and she couldn’t help but read a few as she counted, as well as did my sister, who is a MAW volunteer, and had picked up the rest of the thousands. One letter asked for a “live puppy
instead this year.” Another for a double-barrel shotgun. One asked that Santa help everyone to like Trump. Overwhelmingly, the Xbox was the video game console of choice. We were
saddened to read some, like one that asked for Santa to put money in her lunch account, and one that asked for Santa to help her worry less. And were reminded how beautiful children are when “Eric V.” asked for a cure for childhood cancer.

We celebrated Eli’s actual birthday, December the 3rd, with the thing we know that he loves most - going to Toys R Us. He picked out his
Eli and Dr. Gunn, Miss America 2005.
birthday gift, and we went to Logan’s for chicken fingers, and then home for cookie cake. We enjoyed a field trip to the science museum in Birmingham with Caleb’s class about that time, too, and took some homeschool friends with us.

The benefit dinner seemed to go very well. Our speaker was Dr. Deidre Downs Gunn, Miss America 2005. She was entertaining with her stories of the pageant, but also relevant to our cause as she chose childhood cancer as her charity platform during her “reign.” Dining entertainment was by a friend’s husband, Harpist Steven Miller, and he was absolutely fabulous. The meal by Suzanne’s Bakery was as expected, fantastic. We tried
Winners from Eli's Block Party car shows at the dinner.
something a little bit new. We brought in winners of the two car shows to show off at the event. That was extremely cool, and I hope to build that up, into something unique.

We celebrated Eli’s birthday on his birthday, the 3rd, just our family, because Eli had requested that we see the new Star Wars movie for his birthday with his friends, so we had to wait to have his
Science Museum with Caleb.
official birthday party until the movie came out. We are grateful to the U.S. Space and Rocket Center for allowing us to host our party there at the museum, so we could see the movie at the
I-Max theater and have a place to have cake. The Center allowed guests to visit the museum, and to have a free snack of their choice from movie concessions, too. Eli felt very special with the attention, and appreciated the friends that could come.

Number one and Number four wrapped up school for the mid-term, but Abbey and Eli are behind on their days in online schooling. I think
Christmas Fonzie rolling in.
Santa is ready, thanks to online shopping (we are on Amazon Smile! so set yours to Team Victory 4 All - we haven’t changed that name over yet). I would never get it done if I had to physically shop. My sister, mom, and I used to love shopping. We went a lot of Saturdays, and would be gone from opening until closing, that was just kind of our thing to do. But, I had my own money to spend only as I wanted, so it was much more fun (I didn’t get married until I was 29, so I had several years of independence). I absolutely detest
Birthday #2 at the Space Center.
 shopping now. Scratch my eyeballs out with a fork if I have to walk around a store, and I just don’t want to use the time I do have doing that.
Party kids at the Space Center.
Merry Christmas, and Happy Holidays from our family to all of you precious people, and know that I pray for you and thank God for you every day. I have a lot of pictures to share, so be sure to scroll.
Cousins ready for Star Wars.
Happy Birthday precious boy!

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