Wednesday, May 22, 2013

Eli at the train yard.
Our hearts and prayers are with the people of Moore, Oklahoma. We have many on Eli’s facebook page from the state that we do not even know, but from whom we have received cards and letters during his treatment. Tragedy manifests in so many different ways, we are so sorry for the losses and heartache there.
The 2012/13 school year is coming to a close for us this week. It is so hard to believe that Eli and I have basically only been here for a little more than half of it. He started back to school full-time in January and seems to be doing very well with it. He is still behind on math lessons, but we plan to participate in a tutoring program at school, (with the girls, too, and they’ve been at school all year!), so we think he will catch up by the time school starts in August when he will
Eli studying for a test.
promote to the third grade with his original class. I have read so many heart-tugging stories about brain tumor kids that are struggling in school, or who have had to drop to a lower class, away from their friends, due to the time that they have lost from lengthy treatment or because of the cognitive deficiencies from surgery and treatment. This just further alienates them from their peers and makes them feel different or left out. These years are so important in so many ways, and I just pray for these parents that are conflicted with this hurt because they know that they are so blessed and are thankful to have their children alive, but it is so hard to see your child continue to be victimized by the cancer after the disease itself has been beaten. The strength of these children to endure is remarkable, but I have also seen the stamina and patience of some amazing parents to be the tireless cheerleader. I have learned so much from the example set by people I don’t even know.
Field Day!
But, in general, with school so far, Eli seems to be doing well. His teachers can speak to this better than I can, but I see little or no deficiencies at this point in his cognitive abilities. We do still expect it, and expect it to be a slow change, more in focus, comprehension and retention, but the more he can soak in at this young age, the farther up that intelligence scale he can climb before the decline, so the less deep he will fall. But, he seems to be so good right now in all aspects. His 10-slim chinos for church were even tight! I can’t tell that he has grown any though. He participates in everything that we do, does not show or complain of unusual fatigue. He participated in field day at school and followed it up with karate class, and seemed to hang in there as much as the rest of them did. This last week has been crazy for us as my sister and
Field Day competitions.
I have been juggling some unexpected responsibilities with our mother, so the kids have gotten dragged around a bit and knocked off of their normal schedule and home routine. It has been tiring for all of us, but he doesn’t seem any worse off than anybody else. His third 3-month scan is just over a couple of weeks away. There is a high risk of relapse within these first two years after treatment. I almost feel like a sitting duck since we did nothing to get it in the first place or nothing on purpose or to our knowledge. So, just sitting around wondering if it is about to strike is tough. Of course, your prayer efforts make the wait easier and give us confidence. We also have a gamut of distractions, but that white elephant of relapse potential tramples my brain in little suicide sprints running from the front to the back, front to back. Anyway, so enough of that – one of our best distractions has been getting cars ready for St. Jude. I ordered the bulk of the cars; we have received several from local people; and two girls at Eli’s school collected cars and money at their birthday parties for the effort (Thank you Madeline and Tess!). Then we went shopping! This got Eli involved a little more since I do most of my online ordering late at night and
Eli and Ford, one of his little buddies and deskmate. They
were born just a few days a part, I remember.
 really look at price and product more than what he has fun looking at (color and make), so the shopping at Target and Toys R Us was fun for him. Someone had given us a Target gift card, so when we went I asked the manger if he could help us out a bit and he gave us 10% off. We went to Toys R Us because I thought that would be fun for Eli and the manager, Jake, gave us 20% off the cars. Jake is an East Limestone boy and he has a permanent defibrillator that he said was St. Jude technology. So, we were proud to meet him and he was very good to help us. I also bought 400 batteries and a couple of recent donations have allowed me to bring our total of cars to about 92… yes, 92 cars! (And, you know my OCD is churning over-time with that number.) But, we just demolished, obliterated, completely squashed my goal of 78 cars for 78 beds.
We took a little overnight trip to Birmingham on Mother’s Day weekend to wrap up Caleb’s birthday and to have a little family get-away. He is a train man, so we took him on a much-anticipated train ride, which was a little lack-luster after a ride at Chattanooga when he was two. But, it was still fun and no one complained. And, you cannot grow up in Alabama without visiting the Vulcan. Hg had read a book that fictionalized a battle at the statue, so she was excited to see it in person. The next day we went to the McWane Science Museum. For my mother’s day gift, Vic offered me a new bike or a punching bag (he knows me so well), but I asked that we get to stay overnight at a hotel for our trip. He had wanted to save
TRU manager Jake helping Eli pick his cars.
money by cramming all of this in on a Saturday (plus the four-hour round trip from home), but the kids would have been so worn out, and we would have been so rushed at each location,  and we would have just ended up fussing and fighting because of the aforementioned potentials. So, what better gift on Mother’s Day than to limit stress and dilute fussing and fighting, am I right, mamas? Plus, they love to spend the night in a hotel which we do not do often, so I picked one with an indoor pool b/c this would be Eli’s first chance to swim after having his line removed from his chest in December (I think, maybe). They did not have the heat on in the pool, but he and Abbey were determined to get in it. So, they got in and out of the pool and the hot tub. The next day we visited the children’s science center. Abbey has been twice
Dino Dig at the science center.
on field trips, but the others had only to hear about it. So, they were excited to have their own experience there. I was so glad to get away for mother’s day (even if it was with my kids!) because the weekend before I finally was able to witness the culmination of many months of preparation for a charity 5k for our school. The air horn blew at 8 a.m. and the crazy runners were off to the races in the rain!  It rained –as in RAINED, not mist or sprinkle – horribly, solid the morning of the race. In all the years that I have been active doing this or that, playing ball or skiing or rafting, I have never ever been as wet as I was when I came home from working that morning. As I told some others, if I took a shower in my clothes I would still not
be as wet as I was after that morning. I have never shied away from getting wet unless it is Sunday morning trying to get into the church building, but after that morning the cold was embedded in my bones. I was like a cat around water for several days after. But, it was good experience, and I hope we laid a good foundation for future races. I, myself, and contemplating participating in some kind of race since my weight loss and running is going pretty good. I told Vic that I was thinking about training for the St. Jude marathon and he said “Why not try something smaller first, like a 10k or half-marathon.” So, maybe he doesn’t know me so well after all. But, seriously, I may think about the half if a friend of mine that is a seasoned runner does it. But, summer is a horrible training time for me because the kids are all home, and I
am afraid of injury b/c been-there-done-that, blah, blah, blah, excuse, excuse…Anyway, we’ll see and I hope to decide within the week. So, in between all of the above is school wrap-up, softball, karate, volleyball, homework, mom’s colonoscopy repercussions, church activities, scouts, friends, and chores, i.e., laundry! The kids are pumped about summer as most are, but I can tell that Eli appreciates so much now even though he might not be able to verbalize it, somewhere in his subconscious he knows the gift he has been given. So, this summer is quite special.



I have enjoyed keeping the book for Abbey's team. These
two guys not as interested as this pic depicts them as.


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