Sunday, December 13, 2015

Eli and I have been home again and drove back to Memphis Saturday night after being home for three days in order to attend a benefit dinner hosted by the non-profit that we started this year. I’ve driven that road many times in the last four years, and even now, I still often think
At the benefit dinner "Hope for the Holidays".
about that first night driving to Memphis from home as Eli traveled by ambulance from Huntsville Hospital. That night, I had to pull over on the side of the road somewhere east of Slayden, Mississippi, and I always try to pick out the spot, but I’m not sure of it. It is very hilly, and blank, and when it is dark, it is black along that stretch.

Eli still seems to feel well, he hasn’t seemed quite as tired yesterday and today. I tried to think I thought he might be slurring his speech some again, but I don’t know, maybe not. I’ve just got my
eyes peeled looking for any sign of progression. They don’t want to do an MRI too soon b/c he could have some swelling around the lesion sites which might be mistaken for progression, when really it could be the medicine working. Dr. Robinson would have to report the MRI, and if it is voted as progression, then he would be kicked off the trial. So, we wait another month, and pray for stability.  He will begin cycle number two on Thursday as long as his blood work is good on Tuesday. I am planning to check-out and go home for good on Tuesday, or Wednesday. That will be a bit sad because I can’t imagine there will ever be another scenario where Eli will be treated here for any prolonged length of time. So, when we check out Tuesday, pretty sure we will be going home for good, for good. A bit bittersweet.

When we got back to Memphis, the Ronald McDonald House had left birthday gifts for Eli in the room, and it was like Christmas. They do one birthday party for all the kids of each month, and it was the day we left, so they brought his to the room. Very special that they would make a big deal of birthdays for the kids while they are in treatment. Thank you all for all the birthday cards, and gifts that you have sent Eli as well, the mustang pins, a Mustang wheel cap, even, plus gift cards, cash. It’s been a special month for him thanks to you all.

We finally were able to apply for a tag for Bruce (Eli’s Mustang), and a generous person offered to buy him a vanity tag. So, after trying many different configurations, dealing with availability, trying
Eli's new temporary vanity plate.
to get the batman/superhero spin on it (all the good ones that are readable are taken), we gave up on that. So, we decided to focus on Eli, and settled on ELMN8R. We ordered a childhood cancer plate, so I think it’s very fitting, especially since that has been Eli’s name since the very beginning, and it is very fitting for the car as well. We are excited, it is going to be very cool.

We had a great benefit dinner, and I’m very humbled by the effort that all involved put in to make it happen. It was beautifully decorated, the food was just fabulous, and the entertainment was wonderful. I appreciate all of you that were able to come, or make a donation. It was a great first holiday event for us. We started the non-profit in January with no money, no supplies, no contacts
Getting ready to decorate the Mustang Room.
beyond our friends (who we hope that we still have after this year), and we will be donating $10,000 to St. Jude this week. We have some fun plans for next year, and have already started stirring it up to get ready. If you are considering making some end of the year charity donations, please consider our 501c3. If you wouldn’t want your donation to go to any of our events or organization support, you can earmark it for our “Healed and Home” program, which is a fund that we want to grow and hold to help pay funeral costs of children lost to cancer in our area. Our website is

I had a hefty list of to-do’s while I was home, in addition to helping wrap up the benefit dinner. Caleb had a holiday dinner at school, and I had a meeting with his speech teacher. We finally got our tree
decorated. That doesn’t seem like a big thing, but
for our schedule it is. I was able to at least get a tree the last time we were home, which was a big check mark, but realized our lights didn’t work, then had to come back to Memphis. So, decorating it, getting up the rest of our sparse decorations were top priorities this time when we came home for two reasons - well, Christmas his here, and if we didn’t get things up, we might as well not, but also because Christmas Fonzie can’t come out until it is decorated. We don’t do the Elf on the Shelf because I wanted to show my kids that we didn’t need the commercial/retail industry to set our traditions and tell us what was magical, so we have a Christmas Fonzie. He has his own rules, and they change at his will because, well he’s the Fonz. The boys love him, the girls love him until I ask them to do Fonzie duties each night. But, the tree is up, the Fonz should show up maybe tonight, and we have some decorations
besides the tree. The kids and I would love to do awesome outdoor lights, but Vic doesn’t really
care anything about it. And, we are lucky that we have gotten up a tree, and thanks to the kids it is decorated. They did it 100 percent all by themselves, and it is perfect - not in the way that most people’s trees are perfect, but it is Williams perfect because the kids did it, and because it is done.

We also did some shopping because the last two times that I’ve been home I have tried to dig out the girls’ winter church shoes that are in storage, but have no idea where they are. So, I just had to say, forget
Birthday from RMH.
Wearing the latest in Kate Miller ;)
it, buy each a new pair, and move on. Check mark. Then for the third Sunday in a row, I realized that Caleb only had church pants that fit, no nice shirts. I stuffed him in his little dress shirt for the dinner. It is just stuff like that all the time. Caleb is only one size down from Eli now, and the same size in some shirts. I’m not sure why I’m thin on that size in hand-me downs. Nevertheless, Eli and I bought him two things today at the mall.

I also got three Secret Santa gifts bought (the kids like to draw for Secret Santa names between us and my sister’s family, and my mom, ya know b/c it is so easy for me to take each one of them shopping by themselves for their secret santa, ha! But, they like having a specific person in mind and to think about, so it is fun for them.), the grocery shopping done to set them up for the week, took Caleb to a birthday party, while the girls kept the laundry going to be ready for this week. Meanwhile out in the garage, Big Sam has been sick. I know!!! We just have not been able to figure it out. Fluids have been low, energy low. There was an obvious leak in the coolant, and the power steering fluid. Vic finally decided that the alternator, which is original with 287,000 miles on it, was going out as well. So, he decided he was tired of taking it to Toyota and nothing getting fixed. So, he took it to himself, and uncovered a major cut in a hose (again outside inflicted! Poor Big Sam!). Thankfully, Vic caught it before it busted and left us stranded. So, he replaced all parts involved, including a new alternator, belts, power steering, and Big Sam is once again chirping like a young chick… well, a young chick with some superficial blemishes. The trunk latch broke off in my hand, so it wont’ open, but still he is back on the road. I was so afraid that 300k was slipping away again. How many times have I thought that. So, thankful Vic can do that kind of thing. It is a lot of work for him, and he doesn’t just automatically know what to do, so it takes a lot of reading and preparation, plus Big Sam’s parts are old and hard to find. But, it saved us a ton of money here around Christmas.

I know everyone here already does this, and I hope that our situation helps to highlight your own blessings, but be especially mindful of so many that struggle during the holidays. There are too many families that will spend this Christmas holiday minus a loved one for the first time. Drew passed away last week, and Baylee a couple of weeks before, it can be just as tough of a holiday to endure as it can be to enjoy. Thank you for remembering those, and us during this holiday.

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