Monday, February 22, 2016

Not a lot has been going on as far as Eli goes, thankfully. He is still holding steady regarding symptoms, showing nothing, even jumping on the trampoline on Saturday with Caleb and Abbey. This is quite a testament to God’s hand on us as we have learned that his disease is “extensive,” even so far as our oncologist in Houston telling us that he gave him six weeks to live when last he saw us in August. And, the oncologist at Mayo, that I have been corresponding with, wrote me after reviewing Eli’s latest scan last week, and said that she wanted to “check on him” because she was surprised at how “extensive” his disease was. In other words, she also had assumed that if he hadn’t passed already, surely he was past the point of participating in her trial. Another bit of sobering news is that the doctors in Augusta have changed their minds about the type of radiation they want to do for this trial that we are expecting to enter. Originally, they were going with Gammaknife, which we think
would be less harmful to the previously irradiated areas. But his brain is so eat up with disease, that when they did a simulation, some areas were getting double hit b/c of the way the disease was overlapping. So, they want to talk to us about doing blanket again. Vic is not as keen on that because it just doesn’t seem to us like it would be very effective, but we have an appointment with the radiononcologist on Wednesday to talk about it (just a quick overnight trip, then back). If we are satisfied, Eli and I will leave on Sunday for the five weeks. We stopped the etoposide a few days ago, because the trial requires that he be so many days from his last does to start that trial. He had started to lose his hair, so that was a sad reminder of the realities. Someone commented on how "well" I handle it, but God has given me the gift of superficial denial, and blessed Eli in a way that enables me to exercise that gift.

I was numbly sadden to learn that four-year-old Charlie, whom I had previously asked you to pray for, passed away on Saturday. He had just returned home from his Make-a-Wish trip to Disney about mid-week. It is interesting and sad to see the “turn-over” on the Parents of Medullo Facebook page.
So many names of parents that I’m use to, their kids have passed away, even the author of the page, her son passed away recently. So many new parents coming in, asking the same questions that we did when we found the page. There are some survivors, with input of hope, which helps those new parents coming in. Anyway, I am so sorry for Charlie’s family, he had a new baby sister.

My Mustang room friend got a real job, ha! She has been trying to get back over here to finish up, but we had this little stomach bug for so long, and I hated for her to come until I knew it was out. Meanwhile, she got a job, so it was hard to make time to come now. But, as Eli was admitted to Hospice care last week, they mentioned an organization out of Huntsville that gives kids’ rooms makeovers, so I talked to them and they are going to come finish it up tomorrow and hopefully have it done before he leaves for Georgia.

We still go to the St. Jude clinic once a week for labs, instead of using the hospice nurse which comes twice a week to check on him. I figure he might as well go see those ladies, who are as close to him as family, while he still can, then we will switch to the home nurse. He also had an eye appointment. Eli has cataracts from his first radiation treatment, but until now, it hadn't covered his actual vision. He has one that is covering now, but he doesn't complain or seem to adjust the way he sees. The other is close to covering. This is one of the many reasons, to me, that we do phase one trials. We have to find treatments that do not leave the children to live with such deficits in their long-term health. Who else can do phase one trials? Eli is the perfect pioneer. He is asymptomatic, so he is about as healthy as a terminally ill kid can be in order to weather a trial. He and we have the physical and financial support from you all to get us through the experiment so that progress is made. You are "contributing" to childhood cancer research just by supporting us financially, physically, emotionally, and spiritually. It's a team effort, whether you are contributing by prayer, by helping with house chores, by sending him a toy that makes him feel happy, or sending money for our expenses, you are participants in these trials as well, so remember that you are contributing to something bigger than just Eli when you do whatever you do.

If you are within driving distance, please remember our Healed and Home spaghetti dinner fundraiser Friday, February 26th, 5 p.m. to 7:45 p.m. at the Beasley Center in Athens. We want to be prepared to pay for the funeral expenses of children lost to cancer in our area. Thankfully, we are some prepared for that kind of thing, but most parents are not. They spend their time, energy, and money fighting the disease for years sometimes, then are hit with those bills, plus the enormous expense of laying their child to rest. It is an atrocity with an easy fix. Help us be prepared to fix it when it happens.

Also, we are always looking for sponsors for our org an our events. Eli's car show is set for May 14th, so this is the time to get in on it. Send me a message to receive our sponsor menu, plus we are accepting vendors for the show, anything, but I am really interested in automotive and automotive demo vendors, so message me for the link to sign up for those things.

Bless you all for following, and the effort you do for the cause wherever you are.

No comments:

Post a Comment

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