Friday, January 1, 2016

After not having a high enough ANC to receive meds, Eli and I went back to Memphis on the 23rd, and he just barely tipped over the line. So, we came home with meds and he began cycle two, five days late. I was very excited to have a chance to meet Zach and his family while we were in Memphis, so the delayed allowed for that meeting. Zach, an older medullo guy from Vermont, is also fighting relapse. They were part of a phase one trial with an immunotherapy drug, but sadly, his scans showed progression. So, their relationship with St. Jude was short. It was fun to get to meet them, since his mom and I talked fairly often while hunting trials. And, neat with them being from so far up north. We have gotten to meet so
Eli's first Christmas.
 many people through this journey, it is such a blessing along the way.

We had a wonderful, just regular-old Christmas. Eli’s quality of life allows for a measure of denial as to the cloud that hangs over us each day, and especially on special days. Just another way that God takes
care of us. I was frantic the day before Christmas Eve as I could not find one of Eli’s main gifts that I bought in the summer and put up. So, I darted out to get something else major of his 72-item list, and of course, I put my hand right on it while cleaning up on the 26th. So, back up it went.

We spent most of Christmas Eve with my mom, and my sister’s family. Then watched Christmas movies, and the girls helped me for the first time with elf duty after the boys went to bed. The kids
like to unwrap gifts, just to tear the paper, so I do wrap everything, but just get it on, and check-mark it. They all seemed satisfied, and excited for what they got, although I felt very out of control and unorganized with it - each day being so fragmented, and chaotic. We had a great morning, despite me messing up our brunch. I tried something new, and I shouldn’t have, but in reality the kids wouldn’t have eaten it even if it had been perfect. But, I ate it, so that’s something. My mom went into the hospital on Christmas Day with stroke symptoms. A CAT scan and an MRI showed no signs of one, but still she
stayed a few days. She was unable to go back to her home at the assisted living dementia facility, so
 she went into rehab. We hope that she will regain strength and the work they do with her, will allow her to go home. Changes in surroundings and routine are so tough and can speed up the progression of alzheimer’s, so it is stressful knowing that she teeters on that line. My sister takes on all of the dealings with mom, I did not go to the hospital for fear of bringing something home, so she shoulders all of it. I’m not much help. Mom seems to be doing as well as can be expected. I filled the rest of the week with work in the house.

It’s New Year’s Day now, and I am trying not to look backward or forward. Just fixing my eyes on the moment in front of me whether it be labeled by Pope Gregory, or Julius Caesar, or the Solar System
as the first or last day of a year. None of us are promised another minute, whether you are perfect specimen of health or have terminal cancer. You and I and Eli are given the same amount of time and that is the moment we are in. Our Creator only promises us a home with Him if we choose it, and it is for an eternity, unmeasurable time. I remember vividly New Year’s Eve 2011, how so very afraid, terrified, I was of 2012. I didn’t, and don’t, like being so weak and faithless, letting Satan play in my mind like that, so I try, even desperately sometimes, to keep my mind focused and reigned in away from dark places. It’s hard. And, Eli is not the only major piece of the puzzle that is my life that the devi
l likes to touch, keep in turmoil, and just in general cover with a dark cloud, just as it is with most people, whether it looks like it for them on Facebook or not. So, I am enjoying the moment, the only thing that I am actually given, and it is a wonderful, joyful moment.

We had no plans either yesterday or today. We fell back into our normal Williams entertainment night, with a twist of something special because the kids, especially the girls think of it as a special night. We went to eat at Cracker Barrel and then to the Wal-mart in Athens, that used to be our Friday nights. The boys had some spending money
My grocery shopping pain relief.
(because what an absurd thought to save it), and I wanted to look at Hot Wheels. I found what I believe are two “Treasure Hunts”, and we found a special edition “Make-a-Wish” car that was designed by a cancer kid named Oliver for the 35th anniversary of the foundation. Eli spotted the MAW logo right away. So that was fun digging through Hot Wheels, and all were digging at one point. Caleb decided that he wanted to collect Hot Wheels, so we got him started with some special ones, and made him a box to keep them.

The kids played video games, and I made them little pudding parfaits for dessert. They were awful. When going through my mom’s stuff, we found these little stemmed, glass dessert cups, and the kids
thought it would be fun to eat out of them. (We are paper product people. If no one is willing to wash the utensils and bowls that they use, or put them in the dishwasher immediately, and just put them in the sink for me to do, then they don’t need to be using washable dinnerware. I’ve gotten some out of storage recently, but I will be putting them back up if I keep finding things in the sink.) I think I remember eating pudding out of them when I was young, I’ve got some kind of vague memory of pudding. So, we bought some instant pudding mix, and I think that was the problem it was instant. But, also it had no preservatives, no high fructose corn syrup, so I imagine when I was little, it had all of that, making it taste really good, ha! So, we added some cool whip and sprinkles, and yuck. So, that was a bust. Then we
watched Muppets Treasure Island, which was what Santa brought me. I think this was the first year that all the kids stayed up until midnight.
I’ve only ever had one kind of tradition with the kids and that is that we put everyone’s mattress in our room so that we all wake up together on the first day of the year. Vic is not always with us, does his own thing some years, but the kids and I have always done it. We don’t have a television in our room any more to watch the ball drop, nor do we have traditional programming any more anyway, so instead we just had a sleepover in our family room with quilts, sleeping bags and couch cushions. Don’t know that they loved it, but maybe they will remember it. I ended up coming to the couch in the other room b/c I have gotten to where I snore horribly, and I knew the kids would complain, but for the most part, we were all together when we woke up.

The girls made a special brunch for us, and we found Fonzie’s note that he had gone back to the Land of Vintage Toys. But, his parting gift was a 17-foot trampoline to replace our well-past-it’s-safeness
one (it’s been sitting on the back porch in full view for two weeks. The girls only noticed it a couple of days ago). The trampoline has always been one of our best purchases for the kids. They all love it, and thankfully, we have not had any injuries in the many years that we have had one. We have some football to watch today, and we are hoping to go to the movies. That’s it, not very exciting.

Eli is doing pretty well. He has a horrible, juicy, thick cough, and he seems tired. But, I know he has enjoyed having the others home from school. So, he is doing very well, as far as I can tell. Nothing really to report with him. He will have blood work
done next week here, and we will go to Memphis on the 11th for scans on the 12th and 13th.

I probably won’t write much until we go unless something happens, so no new is good news. I have been busy going through boxes, and boxes of storage things of our own, and of my mom’s, and so far taken three good loads to the homeless shelter thrift store. I am expecting about eight more loads. Lots of toys, just repetitious toys, and clothes, and stuff of mom’s that is just old. We are having all pictures scanned and put on a DVD, so I have been going through her things pulling out pictures, that has been fun… and distracting, so slow.

The tag came in. It looks Awesome!
I hope that you all are having a great holiday. Thank you for your diligent prayers for Eli, and us, and for all those living with cancer.

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