Saturday, June 20, 2015

Eli and precious Hannah at R. McDonald House.
Why do cows wear bells?….. Because their horns don’t work. That was Eli’s joke for Dr. Sandberg. He is suppose to come armed with a joke for his treatments to pass the time. Since it only takes 10 minutes for the actual treatment, there is no reason to get out the video games or turn on the TV, just a joke will do. Eli is pretty deadpan, but he does love jokes and has a couple of joke books that he enjoys. The second treatment went fine, just praying every day that it is doing something.

I had a little short-lived cold, I guess it was, not sure, but did not feel well Thursday night. We had reserved Friday to go to the natural science museum, but I stayed at the hotel to make sure I could rest and keep a check on whatever I was fighting. Thankfully, it got better instead of worse. I went pretty quickly, I felt much better by the afternoon. I do not get a lot of sleep, and had not the last couple of days, so I guess I was just kind of worn down, and then this little cold virus took more of a toll than usually would. Don’t know what that was about, but Caleb and Eli both had some kind of little cold when we first got here, so I guess that is what it was, or we went in an apartment that was not clean and I could smell cat. I am highly allergic. But, I never had a fever, just nose/head issues for a few hours, then it just kind of stopped. After the museum, I got cleaned up and we visited a special friend at the Ronald McDonald House. Hannah Meeson, eight years old, is a relapse medullo fighter and it was her parents, Nigel and Gaylene, that reached out to us with the “band-aid” treatment Eli was on after his first relapse - what he did at the St. Jude affiliate from home. Hannah had been on the same treatment, and clear from it, even. And, then, really, it was their knowledge of the NOAH trial
Sharing for fun b/c I don't have any other pics.
Caleb is now wearing the shirt that Eli has on
here. Eli is four in the picture wearing it,
Caleb is wearing it at age 7.
 (Hannah had donated NK cells for part of the research in shaping the trial) that lead us to pursue it, and eventually get the Ommaya Reservoir, which we are using now for this trial. Gaylene and Hannah are in Houston for Hannah’s routine MRI and to go to a special cancer kid camp nearby. We have only ever cyber-met, but like so many people I only cyber-know, we have a special bond because of our experience. We will be forever in their debt, and forever grateful for their diligence in learning about treatments, and for their willingness to seek out ways to share that knowledge (they have massive brain power between the two of them), which is the going-the-extra-mile part of it. They could just read and learn and tuck it away if they need it, but they actively reach out with what they know or have learned to help others. Many have benefitted from their journey with their sweet girl. So, my heart is very heavy for them after seeing Gaylene Friday night because just a few hours before she learned that Hannah has relapsed again, too. Please, pray special prayers for this little one who has been through so many side affects from the treatment. She just has not had a break. So, special prayers for her, and for her parents as they cut a path.

We found an apartment in Pearland, but we have not signed the papers, committed ourselves yet because we are still nervous about Eli’s chemistries. He will have blood work drawn Monday, so if all of that is ok, we will go for it. A friend here that is from home is gathering some minimal household items for us to borrow (towels, sheets, cookware and utensils), and we will rent minimal furniture.
This is the day before his original surgery at LaBonheur.
Friends came over to see him. He's in a hospital gown, and
this is before a port or line, so he has an IV in his arm.
 Literally, four twin frames and matts, a queen frame and matt, a couch and love seat, one TV to go on one dresser. That’s it, and I don’t want any more than that (I'm sure we will accumulate more than I want, like pool toys that we don't have and will want, legos, hot wheels, and t-shirts. Those things always seem to accumulate everywhere we go). We’ll buy a fold-up table to eat on because that is useful for us anyway and I could use it for events. We may try to borrow some fold up chairs. I am nervous that we will miss out on this place. Our fear is that apartments go pretty fast, (Vic was literally standing in the lobby at a complex and the guy in front of him claimed the only one available), and this one is pretty perfect. It’s a decent price, has a playground, and even located in front of the playground, near the exit to the highway into the medical district, is new, spread out for some breathing room, near anything we could probably think of, is in front of an emergency room, and is about a 20-25 minutes drive to the hospital. Living in Athens, that’s kind of what we are use to anyway. We actually only found two others open at all that allow a three-month contract (there are more out there, yes, but finding them, and liking them is a different story. We’ve tried some corporate housing services, but we need something right away, and we can only drive around so much). To complicate it more, Vic will go home tomorrow morning (Sunday). I am eager to get in an apartment for several reasons (one, that it cost me $12 to wash two loads of clothes
This was our first day at St. Jude, and our first encounter with
a child life services person. You can tell by the look on his
that we have rarely taken full advantage of that service.
 yesterday), getting the kids into some kind of routine for something other than video games, mainly. The hotel room is too small for me to make the girls get in the kitchenette and help prepare lunch or wash dishes while I’m preparing lunch; one of two eyes doesn’t work; you have to be gentle with all the food stored on top of the counter (inside the cabinets is just kind of yucky to me, so everything is out further shrinking the kitchenette features) or it all goes in the floor (have you met Hg or Abbey?); they can’t go to the laundry room by themselves, so I have to go anyway, which doesn’t save much effort, and we are stepping all over each other to fold clothes. Taking the trash down to the trash room together is about it. And, we can’t seem to find an organized way to make a summer study effort. The girls need tutors this summer, so I’m hoping that when we get in an apartment, I can find something like that for them, and I can get these kids back to some routine housework and keep them from being spoiled. They already want to go somewhere every single day b/c the room just closes in on us, and not much to do outside the hotel with all the smokers. We thought we could go swimming, but they have had an algae problem, and have had to do some weird treatment, so….. hmmm, nope. Anyway, that’s my whining about living away from home…. again.

Tropical Storm Bill was pretty wimpy in Houston as far as I could tell. So, no more making fun of our snow days without snow! It just seemed like normal rain, strong some times, but on and off. But,
During the summer of his first treatment in Memphis, Vic
brought the kids when school was out and switched up with
me some. Early on, we tried switching up every two weeks,
but that was difficult b/c it was hard to ever know what was
going on at either place. I couldn't keep up with school for the
girls, and he couldn't keep up with the changes for Eli
in Memphis. So, we gave up on that pretty quickly. I stayed in
Memphis, and he stayed at home. Then
when school was out, he brought the kids and we switched
 more easily. We kept this place at Jellystone Campground, and
Eli and a parent continued to stay at Target House. When it was
time for school, Vic and the kids headed back to Athens.

 it is hot, and that seems to be the popular topic around here with pretty much anybody, locals and transients.

I am pretty distracted and busy with non-profit work, doing two things at once. We are laying the foundation for the organization itself, while also making time-sensitive preparations for Superhero Day, which is coming up for Childhood Cancer month in September. So, it’s a juggle just for that, but I feel like we’ve got a good head of steam and that we will find our niche and do our part.

We are in a lull right now with Eli, enjoying peace, laying our swords down while we rest a bit before the fight picks up again.Yet, I know that you are persistent in your prayers for Eli. In Paul’s letter to the Christians in Rome (delivered by a Christian woman named Phoebe, whom we heard a great lesson on last Sunday at Pearland) he outlines the lifestyle of a Christian, and one of my favorite, keenly simple statements that he writes through the mediation of the Holy Spirit is in chapter 12, verse 12: “Be joyful in hope, patient in affliction, faithful in prayer.” Thank you for helping us with those things.

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