Thursday, November 3, 2016

From October 23

Eli and I are on the road to Augusta for his routine monthly start of the next cycle. Even with all the excitement of the last 2 weeks, the cycle will only be delayed two days. We are so thankful for this doctor, and how he is so attentive to details such as that, like the timing of the surgery so that Eli would not miss weeks of treatment. We have so much enjoyed just sitting back and reading and watching things that you posted as he was discharged and coming home. He has been thrilled to get all the cards , packages , balloons that have been sent his way, and the Legos, since they were
Eli getting his school picture made.
prescribed by OT, lol. I kind of took a few days break from posting about him as I caught up on some home things, and some things with the nonprofit. But he seems to be doing very well, the seizure medicine makes him a little sleepy, but it seems to resolve with a quick nap. He seems a little more unsteady than usual, but nothing huge. But I am so glad to have nothing of significance to share with you about him. This is a one-day trip, we will be back tomorrow night at home. Please say a prayer for the family of Zach. He was an older kid, a young man at his death, that I have mentioned before. I message with his mom some, and even got to meet them once when they came to st. Jude for a brief trial. His parents are a wonderful example for us as advocates, and fighters alongside our children. The have turned over every rock, left nothing on the table. He passed away last night, his body tired. He had
He is playin' me here, I'm pretty sure.
been fighting a long time, and endured so much for many years. He was a pioneer in research for Childhood Cancer treatment, and we are grateful for his contribution, as will be many others that will come behind him and benefit from that contribution. Rest in peace, Warrior Zach.

November 3

Caleb's choice of face-painting.
We got home from Augusta, and hit the ground running! We had five fall festival/halloween things that I shuttled the kids around to, and participated in over a three day period. And, that was before actual Halloween, which is one of Eli's favorite times, third to Christmas and his birthday. I thought, wait, I've only got four kids, somebody went twice,  not cool! So, we have been really busy, and stressed, and worn-out with all good things. Eli still seems to be doing really well. We are starting to wean him off the seizure meds, but he still seems really tired in the mornings, up until he has his lunch. We are getting no school done because by the afternoon when he feels
Getting ready for T-o-T. Abbey was already gone with a friend.
good, he is ready to play in his room with legos, then it's time to go get the others from school, and focus is spread out over everyone for the rest of the evening. But, really, we are just doing normal stuff right now, which is satisfyingly boring. My brain and time is completely occupied with events and activities of our non-profit to close out the year, and with lots of planning already for next year that I am excited about. Our last big event is coming up, and I am so excited for it. But, before that, we decided to enter a float in our local Christmas parade, and we have the absolute coolest idea for the theme "Christmas Traditions." You'll have to stay tuned for it, but to help pay for our float supplies, we are selling "All I want for Christmas is a CURE!" t-shirts. I kept the price low so that it wouldn't stress anybody too
much this time of year, but still help us make just a little to pay for the float supplies. If you want one, we will ship, just go to our website and follow the t-shirt link: But, I am really excited for our end-of-the-year benefit dinner. This year our keynote speaker is Dr. Deidre Downs Gunn, Miss America 2005. She is a doc at UAB, but also as part of her "platform" during her reign, she was a spokesperson for CureSearch (which is an arm of the Children's Oncology Group, the lab we are donating to this year). I am thrilled to have her come up for us, it really gives our event some validity. I am also excited about a friend providing the dining entertainment. Steve Miller is a harpist, and will come to play, and then of course, Suzanne's Bakery will be catering the holiday dinner. Tickets are on sale, just go to that website, and if you would like to sponsor a cancer family to come just purchase the tickets and put it in the comments that you wish to donate the tickets. Thank you for the continued prayers for Eli's healing, and protection as we wean him from these drugs.

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