Sunday, July 9, 2017

July 2
Look who woke up for a few minutes, and talked just a little. He's still got some issues that could be attributed to progression, and this little bright spot only lasted a few minutes, but he ate some crackers,and took all his meds. Still no fever, and he hasn't vomited or had diarrhea since during the night last night. Both girls are sick now with fever, sore throat. Had them swabbed, and it's not strep. Praying he won't be fighting that. We hope to start his new chemo tomorrow, so big prayers that he stay well enough to get this chemo started, and that it have an effect on his disease, thus relieving or slowing what's happening now. Praying for an uneventful night.

July 3
The clinic is always better with a friend! Our "family manager" accompanied us to the clinic today for Eli to have his port de-accessed (we asked them to leave it in from our ER visit just in case he had more
problems during the night, then we wouldn't have to stick him again). Vic had to go in to work today, and I had to take Eli first thing this morning, before I had a good feel for how he was going to do, plus, we had to take Caleb since my daughters were sick, so Melissa joined us in case Eli had issues, then I wouldn't be by myself, and just because she's fun, and Eli loves her. But, he had a pretty good day, considering. He has been awake basically all day (a tiny nap at clinic today, and then a tiny snooze with Vic before supper), has eaten most of one meal, talking when he wants to (and just not when he doesn't want to) and is getting around pretty good. He is very wobbly and weak though (we have to walk right with him, stand with him when he's using the potty, etc.), and won't tackle the stairs to go to his room. He is talking a little slower, and moving a little slower, I can tell processing slower. But, he laughed some today, was
playful a couple of times, so there ya go. And, we started chemo today!! I am so thankful to make it to this day, to just have the chance to lay our last card on the table. Now, we wait and pray, that really sums up all that we can do at this point. We have to wait to see if these meds will affect the disease quickly, praying that we didn't play our card too late, and we have to wait for the results of the testing of his tissue, praying that it reveals a targeting treatment, and we have to wait to see if his counts can recover enough to enter a trial. If these meds don't stop the disease where it is, the results of the testing won't matter, and whether his counts recover won't matter. So, Eli is all but his 10th finger over the edge right now. By the end of this week, I would think, it will be obvious if our card kept us in the game for a little while longer. Thank you for continuing your diligence. He is still very tired, worn out, but hoping for a fun, easy holiday tomorrow in celebration of our great country.

July 4
When Eli went through treatment the first time at St. Jude in Memphis, we met a little boy from Guatemala. The dad spoke a little English, so we learned that they knew someone in the American
embassy who helped them get to America to seek treatment for their medullo son. We also met another family from France who where going to be living at Target House for three years for treatment for leukemia. I'm in two forums, or groups, on FB for parents with medullo kids, or relapse medullo. There are parents from all over the world in these groups, and I often see questions from these parents about treatment in the US, how it compares to what they have access to, or there are parents looking for a way to get to the US for treatment for their kids. In any world ranking you can find of cancer research, or treatment, the US dominates the list. We were thankful to celebrate our country's birthday today, and are blessed to be Americans with access to the world's leading medical research facilities. So, Eli held his flag high today
in celebration of our great country, and in celebration of a great day! He was completely back to pre-weekend-episode baseline. We are humbly grateful for the attention paid us by Eli's Creator. He was just beautiful today. We had a get-together at a friends house with mine and Vic's former "singles" group from church (just love when I meet somebody I haven't met before, and they say, "Well, I don't think we've met, but I recognize your name." Yikes, how many times have I heard that.) Eli went, and ate BBQ, then we had a picnic with our church family at the building, and he ate another meal. He has been in a great mood, playful, he even went upstairs to play in his room this morning. He still seems a little extra wobbly, but otherwise, no issues.
"Psalm 118:2"
This is the LORD'S doing; It is marvelous in our eyes.


July 6
I've had several ask, so I thought I'd give a little update. Eli appears to be doing great. We have not had any issues, he has been sleeping normally, eating, drinking, walking as he was before - a little wobbly - and talking as he was before - a little slurred, but his normal. He's been playful, and engaged. So, far the
new meds have not caused any issues - which you are so thankful for, but it also makes you nervous, because you think well if they were potent enough to kill cancer, they would surely make him sick - cancer moms just can't win. I know when he feels better because he ventures away from my watchful eye. I caught him going up the stairs to play. We have a lot of stairs to span a 10-foot ceiling, and they are steep, so I had asked him a couple of weeks ago to always go up on his all-fours when he goes up to his room now, and to come down on his bottom. I was on the porch this afternoon, and could see him going up to play in his room. Just a bit ago, I could hear him talking up a storm to Vic as he was putting him to bed about a lego set that he was going to get when accomplished a goal that we've given him to meet in drinking (to bring his creatinine number down). He likes to make "deals", so that was the deal, he drink three water
bottles a day for four days. Thank you for your thoughts and prayers for him. Because of your effort, Eli is snug in his Creator's hand, protected and carried above the fray along this journey.

July 8
Did you ever have one of those days where you woke up, put a load of laundry in, and got a shower. Then you took all the kids to dentist appointments, they cleaned their teeth, and you left. Then you went home fixed toasted ham and cheese sandwiches for lunch, and ate while you watched Spongebob. Then the kids played MarioKart together while you caught up on some charity work and some housework, and somebody walked the dog. Then when your husband got home, he took all the kids to the pool, and they weren't ready to come home to eat dinner, so you just took them pizza and they just ate it straight out of the box, then they all just got back in the pool and played more. Then when they came home, they all got showers, put on PJs, and either watched Three Stooges, or read a book. Then everyone just went to bed. Have you ever had one of those kind of normal days? Yeah, I have, too. Accept for chemo, we did have chemo. I had to take chemo to the pool, but how overwhelmingly blessed I felt and how humbly thankful to the point of tears I was to take chemo to the pool.

July 9
Eli is still doing good. He was part of the security detail at Vacation Bible School tonight with his dad. So, he put on an LA state trooper hat, and PA state trooper jacket. I tried to get him to go full out in his
trooper uniform, but he said he didn't want to scare the little kids. (He just helped hand out bracelets to parents dropping off kids, and checking bracelets at pick-up). This is his first year to help instead of go to class, and he was very excited to have a job like the other kids his age (even if it was with his dad) He has blood work on Tuesday to see how the new meds are treating him.

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