Monday, March 10, 2014

Eli gets measured once a month. The growth
hormone has been stopped since the relapse.
He hasn't grown any.
Eli’s lab work looked great on Friday. He did not need any blood products and his ANC (immunity measurement) was above the goal line (compromised by normal standards, but for a kid on chemo, it’s good). We continue to have viral sickness within the family. Caleb began with a cough and fever on Sunday after a fussy few days of no other
Quarantine, dislike!
symptoms but the fussiness. Vic fell on the sword and took him to my mom’s house as soon as he started a fever on Sunday to be quarantine from Eli. Then Wednesday, Hg woke up with 103 temp and cough, so I whisked her away to be with them. Vic felt bad most of the week, but didn't begin his fever until Saturday, the day I picked Caleb up. Caleb has a sinus infection, but is much better. Hg has a double ear infection now, and she and Vic still had high temperatures yesterday. I keep watching Abbey closely, and basically accused her of holding out on me with a fever. She complained of a headache, then nothing, coughed a couple of times, then nothing. So, I just know, after having to share a room with Hg still (because we still live in chaos from the pipe bursting in January - so hard
This is one reason we chose this treatment path.
 to live physically in turmoil, too. All these guys are too busy to take the job, but we hope we have one coming to look at it this week), that she has it - I just don’t see that she could escape it. However, she has not shown any real sign. Eli has been wearing his mask at
 home and in the car with them because we believe this to be an airborne virus (according to the pediatrician). I had plans with the girls to go on a two-night trip to their honor society convention, but now that Vic is so sick he couldn’t stay with Eli. And, if I sent Abbey on with someone else, I would hate for her to get sick down there and expose whoever she was with and then me have to make it two hours away to go get her. So, we did not get to go. I really hated it for them, and was looking forward to spending some time with them and our school buddies. To complicate things (I know, right), Vic can no longer work remotely, so that is going to hurt us, really hurt us, not just now, but with Eli’s
With half the fam quarantine and Abbey at a birthday party,
it was just me and my fav cancer fighter for Friday night.
We chose pizza, legos, movie and the couch.
 hopefully long fight. But, we pursued this treatment at home so that we could be together at home, yet sickness is going to happen in a house of four kids, and happen regularly. So, we are lucky to have somewhere for them to quarantine and possibly save Eli from what for him can be life-threatening viruses. I have not enjoyed visiting with Caleb through the glass door at mom’s old house for a week, and I know Vic and Eli both are beyond ready to see each other. But, we chose this path because it gives us the greatest amount of time together, so these hiccups will happen, and I would rather them happen in Athens, Alabama, than in Memphis, TN. Anyway, just sharing a little bit of the background noise that happens at our house. Meanwhile, I’m doing my best to work on a slideshow of Eli’s first treatment experiences. So, I’m not writing much during this lovely breath of down time. Eli and I have decided what we want to take back to St. Jude when we go in April (and it will not involve a trailer :). The laundry detergent
We've been missing Daddy, so legos help.
 was not very exciting for him, of course, and it was driven by me knowing what was helpful as a parent. So, I like to ask him to make suggestions (with the help of St. Jude's Most Wanted list) as to what was helpful for him as a patient when he was really sick, what did he like doing or having (to wit the donation of remote-controlled cars, and Hot Wheels). When Eli was "in-patient" or when we were kind of self-quarantined at Target House, we relied heavily on watching movies for him. He often did not feel like playing or even getting up, so I would entice him to "move" by going to the nurses station (when in-patient) or downstairs at Target House to go pick out a movie to watch. So, (read closely), we are going to set a goal to take back 30 DVD's of RECENT POPULAR FULL-LENGTH FEATURE movies. That is on its "Most Wanted" list - in other words, no TV series DVD's, no $5 bin cartoon "to-DVD only" movies. So, what is "Recent"? I would say at
Again - this is why. Quality of life.
 least within the last 10 years (although Monster's Inc is one of my favs and it is older than that), but if it is a big Disney movie like Toy Story or big Dreamworks movie that is still popular today, that's fine. Use your judgement. Two suggestions: 1. These do not have to be new. If your kids have outgrown Disney's Cars or Disney's Wall-E and you want to clean out, and you don't have the jacket any more, that's fine. We'll take it.  2. Since new this will be at least a $18-25 thing each, my suggestion is to be a contact person for a group (class, team, office, gym, teachers, etc.) that you or your kids are involved with and collect $2 or so from each person and pick out one movie to donate. Or, if you just want to buy one personally, that's fine, too. As usual, if you want to sit this one out, please do. Eli will be going to Memphis every two months, so there will be other opportunities. So, let's review: New or Used full-length, popular, recent movie on DVD (not blue-ray) that is rated G or PG ONLY, doesn't have to be cartoon.  (I would also love for you to take a sharpie and write on the DVD for example "From Eli's friends at Madison church of Christ MMO" kind of
This is Eli during one of the in-patient courses
 of his first treatment at Memphis
picking out a movie at the nurses station.
small b/c they will write on it something like "property of Transplant Floor" or something, so leave room for that. So, yes, open it, and write on it, then close it back up.) Also, duplicate movies are not a big deal as they will spread them out to different areas of the hospital, and I will take some to Target House (not Grizzlies b/c they do not have a check-out system and people can walk off with the movies - they do these other places, too, but it is harder). So, I hope maybe some school classes or ladies Bible classes or your office or whatever group you may be involved with might have fun picking out a movie. If you are in Athens, you can drop them off at the Grasshopper Children's Boutique, or in a box on my front porch, or I will put out a box at church. If those places are not convenient for you, contact me when you have it and we can make arrangements. If you live out of town and want to order it and ship it to me, let me know and I will give you an address. I hope it might be fun for your groups to participate. We will need these by April 21.

Please, remember Nolan and Brayden. I have only “cyber-met” these moms, but they are struggling with relapse right now. Both boys on different treatments, but both are having a really tough time. Brayden is on the St. Jude “experiment” that we will do when this band-aid doesn’t hold any more for Eli. And, it looks like it is rough for him. Plus, his little brother is showing some scary symptoms and is being checked on Tuesday. So, that mother is beside herself right now. So, special prayers for the kids, families and medical professionals taking care of these guys that are fighting so hard.

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