Wednesday, August 29, 2012

Eli's favorite toy is the Tomica Hyper City pieces.
He's almost got them all, some are at home, too.
I want to preface this post by asking for you to remember that you love me. Those that know me are snickering because… well, because they know me and are not always sure that they love me or why they love me. But to those of you that don’t know me, keep your hands and arms inside and hold on to any loose articles. So, I’ve been trying to think of a way to kind of have a little “Good Luck Everyone” thing-ish for when Eli leaves Target House for the patients behind us. We can’t afford to feed the 200+ residents and we likely won’t know until right up until it is time for us to leave that we are leaving, so it is hard to plan. St. Jude is really good at keeping those details last minute. So, I had this idea… yes, I had an idea (this is where the people that know me roll their eyes). It is going to require some effort, so if you don’t have time or abilities, don’t feel bad, I’ll catch you on the next “idea.” If you have a scout troop, a Bible class, school class, ball team, or a charity birthday party, or really if you just want to participate, I would like to ask that each interested participant prepare a “Get Well” type card (kids can handmake cards or drawings) with a short personal message of encouragement in it (or picture) or Bible verse, signing your name and that you are a “friend of Eli” and tape in the card a gift card to Subway (or McD’s, or CFA, or BK) -just like $5-10 only, just enough for the patient to get a meal. You can just mail it to us and we will re-envelope it, or if you are part of a group have one collection person take all the envelopes and mail it as a package. I can reimburse for shipping of packages, let me know. But, here’s the cool part – Donna Callaway of Ring Enterprises, which owns Subways in Memphis, is kicking us off by donating $100 worth of cards! How cool is that. Eat Fresh and Be Blessed! So, I will need to collect 75 more cards, private message me the number of cards you can pledge, and I will cut it off when I have enough promised. Postmark by September 10 so Eli and I have time to re-envelope what we need to and get them distributed just in case we get to come home before we anticipate. A fun project, right?? I’m excited, I think it will be a wonderful personal touch for each patient and hopefully help encourage him or her little as we are preparing to leave.
This is Eli's normal, favorite sitting position. Comfortable, not.
Eli had a good day. He didn’t need any blood products, and he has been in a good mood. He is not eating though, and they are experimenting with taking away his infusion of lipids to see if his appetite will begin to increase. That’s the only thing holding his weight right now which is in the mid 50’s I guess, and he doesn’t have any more to spare at his height. Also, since I let a good amount of his TPN leak out while I was trying to get him hooked up tonight (sigh!!!), there’s no telling what kind of supplementing he will need at his next labs. Good news though is that his ANC is creeping in the right direction. I am anxious for that to get up and stay up. The top picture is in his “playroom” in the apartment. He loves this Tomica city stuff, and all his cars, which this here is less than 1/10th of what he has. When we unhook him from his TPN and pole that he pushes around the apartment to hold it, he plays in the floor. I bought ths carpet/rug to make it a little more comfortable.

What on earth did these patients do before
video games - read a book?

In other news, Jack’s surgery seemed to go as expected. He has an MRI in the morning I guess to see if they got it all. His Facebook is “Jack’s Fight”. I also want to mention another little one that I am ashamed I have not already. Blake Radder is at Vandy and was diagnosed within a week either before or after Eli, I can’t remember. It was such a crazy scary time back then (and now); I was not operating at full capacity and just didn’t commit him to memory. But, now as my attention is able to focus a bit, I want to ask that you add him to your prayer list. He is the nephew of a friend at church and he is being treated for medulloblastoma as well. He has a CaringBridge site, but I don’t think he is on FB. And, Ryan- I don’t think Ryan’s mom knows much yet from Vandy. There is no treatment for recurrent medulloblastoma, just to be harshly realistic. There are clinical trials with side effects and no promises. That’s it. It doesn’t matter where she goes, who she talks to, if it is a medical doctor, naturpathic practitioner, or the medicine man, there is no treatment only trials and tests. So, it’s a matter of either finding an experiment that you are comfortable with and can afford pursuing or the heart-wrenching matter of deciding that your son has done his part to further the cure and all that’s left is to play.

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