Tuesday, May 20, 2014

Eli waiting at the clinic for lab work.
 A Skechers commercial played over and over between Sponge Bob episodes during the first endless, nightmarish hours of Eli’s initial diagnosis at the close of 2011. He had gone by ambulance from Huntsville Hospital late in the afternoon to LaBonheur Children’s hospital in Memphis where we would wait for the holidays to pass so that he could have the risky brain surgery that would reveal the monster that had struck him. We were told that the five-plus hour surgery could rob him of the ability to walk or talk or see, or even remember who we are. All of those abilities are developed in the area of the brain that was about to be invaded in order to remove the cancerous tissue that he was covered in. There was a line in the sand for the Eli that we knew. I was terrified and sick from those thoughts. In the room on the 7th floor, we watched the Sponge Bob marathon, which he was excited about because he had never been allowed to watch the show. At the breaks, a commercial came on over and over for a type of Skechers tennis shoes that had flames on
The shoebox is in the chair with him. He wears them in most pictures
from treatment the first go-round.
the toes that lit up. Every time it came on, he would say, “Look, mama, those are the ones that I want. Can I have those, please, can I?” I had never bought him light-up kid type shoes because he has flat feet and needed the arch support of a good tennis shoe, and I just didn’t like the flashy, comic type tennis shoes anyway. It broke my heart to hear him so desperate for those fun shoes because whether he would walk by the next week was unknown and somewhat slim. After the medical team got everything under control and a plan was set, the first surgery was put on hold until after the New Year’s holiday, so I had time to go home and get things more under control there. I was terrified, distraught and physically sick to my stomach from the news and the entirety of the situation. It is a four hour trip home, and thankfully the husband of a friend from church happen to be coming home from Arkansas where he had been for the holidays and he lead me out of downtown Memphis. Two friends met me half way,
He is my side-kick.
 in Corinth, Mississippi, to drive me back and allow me to rest a couple of hours before hitting the road running at home. Jill and Jennifer were kind enough to detour an already exhausting trip to a sports store in Decatur where I bought him those shoes. The stores would be closed for New Year’s before I would go back to Memphis, so this was my only chance. If he only walked the halls of the 7th floor at LaBonheur wearing them one day, it was going to be worth it. I credit the conservative control of the neurosurgeon (and God for answering prayers) for the preservation of those abilities. I can remember being hysterically terrified inside as I watched him sleeping in the recovery room. I wanted to be right in front him when he woke up, and pleaded with God for him to just say “mama,” then I could breathe again. I’ve seen and read about what could have been, and not a prayer goes by that I don’t thank our Creator for His protection. Eli’s growth pretty much stopped when he went through radiation, so he never really out grew those shoes although they did get a little tight. The flashy red and orange flames on the toe were always an ice-breaker for anyone trying to engage him in conversation along the way. He wore them from then on throughout treatment and beyond. I finally put them up a good while back now, the velcro wouldn’t hold any more, and he was
Waiting for allergic reaction to surface.
ready for something different. We have been blessed with such an easy road, and I am so thankful to all of you who have petitioned our Creator all these many months, into years, for his comforting hand.

Eli is still fighting the congestion and ear infections that got out of control after chemo last time. The one rupture has healed, but he still has infection behind both ear drums, and the cough is not much better, if any. He has some jaw pain, now, too, which the pediatrician thinks is from his lymph node being aggravated. He said that the ears should be further along by now, so he wanted to switch the antibiotic. During Eli’s first protocol at St. Jude, he had a horrible reaction to an antibiotic, so since then we have stayed away from the common family of antibiotics which includes Omnicef - something he got many times when he was little without issue. The only other choice was Septra. Really… Septra? Well, you might remember, that recently we deduced that the Septra he was on regularly might be suppressing his counts which kept him from getting full doses of chemo. He has chemo on Friday, so I really didn’t want his counts to be low. So, we decided to test the allergy. We took it in the office for the doc to watch him, and he did fine. So, I am hopeful that it will work quickly so that he is healthy for the most part going into chemo on Friday.
Digital buddies.

If you have ever wanted to try out participating in a 5k race, I’ve got the perfect one for you! Our school and Bankston Motor Homes is hosting “Lite the Nite 5k” in honor of Eli on June 20th at 7:30 p.m. There will be plenty of walkers at this race, and beginning runners, so this is a great opportunity to check your first experience off your list. You have plenty of time to prepare. My suggestion is to test yourself, and if you can finish 3.1 miles in 45 minutes, you are good to go. Eli may be in Memphis for his next MRI, but we are trying to work that out differently, however, getting that done will be paramount.

This is the last week of school. Caleb graduates from pre-school Thursday, and I will truly miss that little school. I may be remembering wrong, but I think Abbey started there when she was three (we did not live here when Hg was preschool age), which would make this the end of our eighth year
Trying to impress his new teacher.
there. Caleb is a red-shirt kindergartener, so at the beginning of the year, I thought it would be better to go somewhere new to repeat a four-year-old class. We might have lasted a week at the new school, maybe not that long. And nothing bad to say about the new school, we were not there long enough to have an opinion either way. We just missed our old school so much, and with it being our last year of preschool ever (finally), I didn’t want to share those memories anywhere else but there where I had been for so long. I am so thankful that we went back, now, considering that Eli relapsed and I needed the help of those that love Caleb and that give me peace when he is with them. He had his kindergarten interview today, and I think he made a firm impression that he likes to impress. If he wasn’t so cute, it would be annoying. I just hope the cuteness holds.

We are hopeful that we get the ok from insurance (again!) to go ahead with carpet in the house. There was some dispute as to the area that was covered, and as to how much the carpet was worth that
Overlooking the grounds of the former LaGrange College.
 should be replaced. So, many people around us getting things done and repaired, yet here we still sit, five months later with only the fact that it is not leaking to comfort us.

The girls and I enjoyed a girl scout overnight at LaGrange College Mountain. It rained in the morning, and it was a pretty chore-heavy trip. They like to explore and do crafts and just play mostly, but still it was fun to at least have a little trip away and Abbey always loves any opportunity she has to be with friends. She is a friend gal. She has been doing some better with her sleep walking, though she did get up last night. She and I slept in the car at the camp-out, and I pretty much slept as good as I do anywhere. The air was cool, and there was a light rain for most of the night. I am the troop leader for the cadets, of which there are only four, and just three of them came. I am mostly just helping each pursue and hopefully obtain her Silver Award - the highest individual award for a cadet. I just helped them narrow down a project and get them started
Learning how to make a camp fire. The smile makes me nervous.
 with a timeline and plan. Since we do things to benefit St. Jude all the time, Hg was wanting to do something different. Both my girls love animals, so she wanted to benefit an animal shelter in some way. Not far from us, a friend has a non-profit shelter that was devastated by the tornadoes that tore through in April. She lost everything but the animals. If you have known me very long, you know that I love projects, and I love to think BIG. So, Hg and I came up with the idea to host an old-fashion Barn Raising to build a barn in one day (which after research, it’s not really one day) for this organization for the horses or the dogs or how ever she wanted to use it. We had this rosy idea that we would persuade the Amish to come in an impressive parade of carriages to Athens, Alabama, and share their knowledge and skill to build it for her. Then join our
The "Big Girls"(yes, even the one on the end).
 communities and cultures for an evening of feasting and sack races to celebrate the spirit of humanity. Then we asked Vic what he thought about our idea … so we might build a doghouse and have some watermelon.

The little Georgia boys are on my mind as Nolan’s time is obviously short, and I am so fearful for this young mother and his brothers and sister. Brayden is having a hard time in and out of the hospital fighting peripheral ailments, such as allergic reactions to platelets. Eli would have a reaction to platelets, too, during his first rodeo. It is so hard to have those things happening while fighting cancer, too. Brayden has his MRI on the 28th, so please, please storm the heavens that this concoction of drugs is the smoking gun for him and all the kids. My personal thought is that even if these drugs affect these tumors, it is still temporary because I think they still do not have this disease narrowed down enough, and they are still not targeting the root cause - which I think is viral. So, my complete opinion - and I am as far as anyone can get from understanding anything sciencey, - is that until a vaccine - yes, a vaccine - is found for that virus, they are only treating the symptoms. I really think they are going to have to think outside petri dish to cure it.

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