Tuesday, March 8, 2016

It seems like all I ever do are “quick updates” that are not always so quick, but maybe this one will be. Eli finally took his first dose of the experimental drug Indoximod today. As you will remember, Vic came to Augusta late Tuesday night for me to come home on Wednesday to be home for my mother’s arrangements and funeral. It was on Friday and all went very well. Tears and laughter, so as it should be.

The original plan when I left for Augusta at the end of February was that he would come to Georgia on that Friday (last Friday) anyway as Eli was expected to begin radiation treatment then, so he was only coming a few days early. He already made arrangements to work from Georgia for all of this week in order to be with us as Eli would have started the radiation part of the treatment. But, Eli did not start the treatment when expected, so I stayed home, and Vic stayed in Georgia. Eli passed everything with flying colors that first week, except his hemoglobin count was lagging. He did not meet the minimum requirement to begin the trial. So, we had to put it off, and he was checked every day. As of Friday (the original start date), he still had not made it. Yesterday, still had not made it, and as of this morning, still did not make it, and it had even decreased. So, the oncologist appealed to the trial sponsor, and to the hospital review board
 requesting they waive the minimum requirement for him to get started. Thankfully, they agreed, so we have finally begun. The experimental medicine has to be in his system for three days before beginning radiation, so we hope to start radiation on Friday or Monday.

They went to a car show in Augusta on Saturday, and to the zoo in Columbia, South Carolina, on Sunday. I didn’t want to go to Toys R Us or Target every day if we can help it, so I asked that he be seen by Physical Therapy, mostly because I know that he enjoys it, and he could only benefit from it, and we had nothing else to do. The pediatric PT’s make it fun, and he was so excited about
 going after his last session because they put him on a big tricycle. He loves to ride, always enjoyed riding something when he was little, so I hope to get him a big trike for when he comes home.

We are at the Ronald McDonald House, the address is RMH, Attn: Patient Elijah (Eli) Williams, 1442 Harper St, Augusta, GA 30901. We were able to move into an immune suppressed room, which I am so thankful for because they allow no food or drink in the rooms, none. For a snack, or even a water bottle, we would have to go downstairs to the common room. But the immune suppressed rooms have less restrictions, they are accessed from the outside, we can have some food in the room, there is actually something to sit on besides our beds, and even
 two bedrooms. So, that will be much easier to deal with for six more weeks.

Anyway, that is what is going on here. I have an unexpected week at home, so I am just continuing the quest to close out the storage unit, and find a place at home for everything without getting junked up.

Please, remember Kosta’s family in your prayers. They are from New Zealand, and lost him on March 4. I think he was 8, maybe. That’s three kids that just I know of in, I think, four weeks, maybe even three weeks. In wonderful news, Riley, from Arkansas that is doing the Houston treatment behind Eli is having a good response, and was able to get the hospital near home to continue the treatment beyond the trial.

We have a couple of new videos to share: Eli driving his mustang, and a video of the Mustang Room. I’m also including some pictures that I’ve been taking anticipating a post, but just could never get to it. We are trying to add a splash of “Eli Blue” to the Mustang, so Vic painted the calipers blue, and we plan to try to put plasti-dip in blue on the “5.0” and the horse on the front, see how we like that. Everything is very visual right now because that is what appeals to Eli, but Vic is chomping at the bit to do some performance upgrades, and going to car shows, doesn’t help!

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.