Tuesday, June 3, 2014

According to the U.S. Fish and Wildlife Service, the Gray Bat is an endangered animal that lives in limestone-lined caves along rivers or lakes mostly in the southeast. There is one such cave downstream of Guntersville Dam on Guntersville Lake in Alabama. It is a tiny opening (in relation to the wall it is in) above water on the side of rock ledges that outline the north side of that part of the lake. The depth there is around 75 feet, but above the water, the opening is small and unremarkable. It helps that some protection agency has placed a green, barbed-wire fence around the opening to keep out ill-intent, or even well-intent, intruders, and documented the area with an informative sign. Still, considering the size of the lake, it would be easy to miss if you were not looking for it. Another sign that something special is there is that a small number of boats gather at sundown just outside the cave. This weekend, a friend that Vic works with offered to let us use his
Waiting for the show to begin.
ski boat which he keeps at a marina on Lake Guntersville near a nice campground. He took us out on the boat to show us some things about it, and took us to see this cave. As the sun began to sink, a handful of boats floated around the mouth of this cave waiting for the show to start. It had even proved impressive enough in the past, that a young man brought his girl and they sat cuddled in the twilight, floating to Percy Sledge’s “When a Man Loves a Woman,” which he graciously cranked loud enough for us all to experience. So, as the day transitioned to night, thousands of the nocturnals awakened and began to fly out of the tiny opening for their nightly feedings on aquatic and forest insects. It was a spectacular sight and fun experience. We would not have known it was there without the signs, and even then, we would not have fully known about the natural event that supplemented the signs without Don taking us there to see it. (A short video of the bats)

Eli seems to be recovered from the ear rupture and infections. He is eating fair, but does seem tired, still. This is week 21 of treatment, and it may be my imagination, but it seems to be finally taking a bit of a toll. He has little bursts of energy for this or that, or for when his Daddy gets home, but over all he seems tired and pale. His appetite, as I have already mentioned multiple times, seems less, and, his hair is changing. He has lost some, though still not noticeable, but the texture and color has changed. But, again, he’s been taking chemo for 21 weeks. Mild or not, it is still chemicals in his little body that are designed to kill cells, so what really would I expect. He also seems to be retracting socially some, which is somewhat common with pediatric cancer patients, especially brain patients who have received the extent of radiation he has in that area. Add to that, that his personality is already
Patience, patience.
 somewhat unsociable and shy, and you’ve got a recipe for homebody. So, his energy and activity level seems lessened in general. This two month in-between for scans is a little tough. I guess with the results of the last scan being so lackluster, and now with the devastating news from the little Georgia boys that we’ve been following. Nolan, who I think was 11, passed away on Sunday. He fought relapse medullo for years and has left a legacy of light for those that did know him. And little Brayden, who I think is Eli’s age, 9, and is also relapse medullo, received news on Thursday that the monster had progressed and his treatment was no longer working. These two little boys and their mothers had become best friends after meeting and sharing experiences over the years, so I am just so heart-heavy for these two young mothers and what they are enduring. And
Big Sam and Eli's Escape.
 enduring alone. I believe these two young women are single mothers, both with other kids, and I am just in awe of what I perceive to be their attitude and strength. Vic and I are absolutely not, NOT, what I would hold up as any kind of marriage example, but I do not know how anyone could walk this path into and through the valley without someone to tag team for decisions and discussion. Sometimes it might be easier, because I am a “let’s do this thing” kind of gal and just get what done what needs to be done, but there are more times than not that I stand dumbfounded, lost in indecision, and frozen in fear. So, I pray that they each have someone that can share the load in some form or capacity as they travel their respective paths. And, I am so thankful that they have found each other and share a special friendship.

I found out about Brayden’s MRI results as I was packing for us to enjoy a weekend in Eli’s Escape - what he has named the pop-up camper that he got for his Make-a-Wish (does anyone local know
My opinion only - I loved the boat more than the camping.
Maybe it's just the captain in me talking, or I'm still a
little whoozy from the waves, but I would love a boat.
Eli, not so much, he is still a camper boy.
where I could get something airbrushed on it. I wonder if that is expensive). Have I said before how much I do love the Make-a-Wish organization. My sister is now a MAW volunteer and, even in her short tenure so far, she has seen many (too many) kids through their wishes. I want to do that. Ironically, the owners of the campground that we stayed at have a child who received a wish at one time. I do not know the details, or even their names, but they unexpectedly gifted us the weekend at Honeycomb Campground. We didn’t know until we arrived and went to pay for it. When I made the reservation, the lady on the phone asked me lots of questions about the camper (brand, year, size, etc.), and I didn’t know anything about it off the top of my head and it was still parked at the house, so I could not run outside and look. I felt stupid, so in trying to nervously explain away my ignorance, I apologized and said something like “Well, I just don’t know that much about it, my son wanted one for his make-a-wish, it’s a pop-up, that’s all I know, we’ve
The girls tubing.
 only been one other time…” that kind of thing. So, what a beautiful gesture from another MAW family, and thank you to them for that. We hope to make the campground a regular spot for our family. It was very clean and quiet, and the lake was beautiful. Add to that the ski boat experience, which was just over the top fun. We are so grateful to Don for that because we just would not have that kind of thing available to us without his offer and what a great experience for our kids - and Vic! He was so excited to go skiing. I had to get my boating license so that I could drive the boat. I was stressing over that because I have not had to retain and recall information for testing purposes in decades. I missed two of the 25, and I think the tester lady could tell I was nervous about taking it because she shared with me that she had to take it 8 times before she passed it. Wow, mental note not to ride with her. I have said before that I love driving. It relaxes me. And, I love driving
anything (except a horse. I don’t like knowing that what I’m trying to drive might be thinking for itself, and therefore, might have an idea contrary to mine), so I was fine to fill the captain’s chair. The girls rode the tube, and Caleb even rode it. He went slow, but still for him to even get out there was amazing. Eli wouldn’t do any of it, he is getting disagreeable to most things new. And, I felt that I did pretty good driving. There was only one time, that I got confused. I had explained to the girls what the hand signals were for the skier according to the manual. So, their job was to watch Vic (I had a mirror, but couldn’t see to that detail) and if he did these things with his hands, this is what he meant. I had to show them to Vic, too. So, one of them is taking your hand and pulling it across your throat, looking like you are slitting your throat. It means to “Kill the engine” or “Kill the speed.” So, I told the girls it meant “Kill it.” So, on into the
 afternoon, as I became more confident and relaxed behind the wheel, with the girls watching Vic thumbs-upping to speed up, and thumbs-downing to slow down, they suddenly yell “Kill It!” So, I punched it. Then Abbey started yelling “Man down, Man down!!!” Oh, oops. According to my instinct, that means something totally different in a car on the road.

We tried to go fishing a few times, but again this weekend, just had no luck. Hg caught a good size bluegill, but not even a nibble beyond that. We had to give up on our idea of a fish-fry. I’m so glad that I brought hamburger back-ups. Camping is so much work, though. Just the packing and unpacking, and packing, and then unpacking again. Not to mention the setting up of the pop-up itself. I told Eli that we needed to ask Mr. Bankston what he would trade us even for used that was a pull-behind with a bathroom and more
beds. Eli said, “Well, it’s mine, and I will make that decision.” Ok, I will let him sleep on the table-top next time. And, we don’t cook when we camp. Mostly because I am inept at cooking, but also because I am there to play, too, and don’t want to cook and clean-up for hours. So, we did hamburgers, and roasted corn over the fire Saturday night, but that was it. The rest was cereal bars or muffins, and sandwiches and fruit. Done, let’s hit the water!

Except for driving the boat, it was not necessarily a relaxing weekend because of how much work it is to go, and I don’t sleep, literally I get no sleep, so it is tiring. Add to that physical stress the news that Brayden’s cancer had progressed and spread, and it was a weighty weekend. It is devastating news for his family, and so saddening for us for them, but it has implications for our family as well. We have been following
Got him up first punch. He jumped the wake a few times, too.
Brayden, first because I just like to keep up with and pray for as many of these little guys as possible, but also because he was on the St. Jude experimental protocol for relapse that included the use of two different chemos. We had laid that out in front of us as our next stepping stone if it was showing success. We know that Eli’s current treatment is temporary, and that there will be a time when our path will come to a crossroads or end. In our limited understanding, we have tried to come up with a plan B, C, and D. There is no proven treatment for relapse, so the doctors have no answer. It is basically up to us to place that stone for footing. Unless St. Jude has convincing proof to contradict this one case - and it is just one - it is now doubtful that St. Jude will be our plan B. I’m afraid a painful time is nearing that we will end our time with St. Jude one way or a devastating other.
We could cast right from our campsite, but we
didn't even lose any bait to nibbling.
 If that is so, that will mean an extreme and sad change for our family that takes us away from our beloved community, my hometown. And, of course, all we can do is prepare for a path that we can not see, a journey that we can not imagine, and a time frame that we can not know.

So, first - in addition to praying for Eli to tolerate his current treatment well, with minimal detriment to his little body, and that it continue to be successful - please, pray that the house sell for what we need it to sell for so that we may be out from under that tie. If we move out from under the wings of St. Jude, frankly, money is going to be an issue. We will be paying for whatever treatment we pursue, which will be astronomical. And, we still have all the usual, every day financial concerns of kids peripherals, plus Vic and I are not young, our own future medical issues are not that far off, and I have no hope of getting any kind of a job to help. So, that is something that is an added stress we know is coming.

Second, please pray for our other kids, that we make the right decisions for them at this crucial time in their youth and growth. We have made a heartbreaking decision to pull Eli from school and
Hg got our one and only fish in two weekends of trying.
 homeschool him for the remainder of his education. I have often expressed my love for our school, my school, and the peace and delight it gave me for Eli - all the kids - to be there. The administration and teachers have gone above and beyond teaching him. They love him, and my heart is broken to remove him, and to remove him based on these reasons especially. But, he has only had one full year of school ever, and that is kindergarten. Going into the fourth grade - which is really a transition from child to student - the education gap between him and his classmates is too great for even these precious teachers to hold together. He would be lost, and it would not be fair to the teachers, nor to the other students, for them to dedicate the time and effort he would need to be engaged at that level. We do not want to drop him to the next class because we think it would
They liked the boat, too.
 cause him to socially retract even more than he already naturally does. Plus, his nutrition and hydration is very important as he receives chemo, and he just can’t get what he needs at school. I struggle with him getting what he needs when he is at my side, much less away from my thumb in that area all day. And, sadly, it is a good time for a natural break from the class to distance him some from the kids so that the road might be easier for them later. You can’t know the sadness I feel in making that decision. But, it is the right thing to do for Eli, and the right thing to do for all those that are involved with him at the school. He will be around as long as we are around, and will visit at appropriate times. So, as part of that groundwork for laying that next stepping stone and preparing our entire family, we have also decided to homeschool Hannah Grace. She is somewhat falling on the sword, fulfilling her role as the Guinea Pig, although it was her offer and her decision to do so. She
 heard us talking about it, and said she was curious about it, so she would try it if it would help. So, to be clear, we are not making her. I don’t think any student could be successful if they were forced to do it, which is why we are not forcing Abbey - yet. Now, with St. Jude losing ground as our next step, we want to be as flexible as possible to do what we need to do for Eli, but we also have to consider the family as a whole and the other kids as individuals. Any changes for them need to be as smooth as possible so that their own lives as individuals are rewarding and meaningful to them. I want their growth to be based on positive experiences and to grow a positive attitude without excessive regret or misplaced blame. We have said before that we have done the family-split thing already with his first treatment when he and I lived in Memphis, and Vic and the kids here. So, if we have to pursue treatment somewhere else (which could be next
Some storms went around us, thank goodness.
 month, or two years from now), we will all move. That could happen at any time. Having made the decision to homeschool Eli, which will really be minimal, we thought it would be prudent to go ahead and transition myself into that community with a more realistic experience while we are not under the stress of making that next step of treatment for Eli. Homeschooling is not easy and there is a learning curve for how to do it and how to operate within that community. The kids success at it really depends on me. So, if I can learn it on poor Hg, lay the groundwork for operating within that community, then when the time comes, we can drop everything, add Abbey and Caleb easily, and move on. If I fail miserably up front, then Hg has not missed any high school credits and will go back to school and we will have to come up with another plan. The house and school adjustments are all in an effort to be flexible for Eli’s needs and create stability for the kids
 within this life that is ours. It is not a life that I wanted or worked toward. We have done nothing but work toward the kids growing up in this one community, in this one house, in this one school, in this one church home. I expected to live in harmony and roll with the punches - or nudges. I expected to be rejuvenated by family vacations, not feel the weight of making memories. I expected to stress over getting to the grocery store, and making cookies for class parties (ok, buying cookies at the grocery store). I expected to worry about missing girl scout meetings, being on time for basketball games, and getting school clothes. I expected so little. I am sad, terrified, and angry that we are forced to agree to decisions that we do not want. And, it is my prayer that God give me the knowledge, wisdom and strength to cause pain to our Aggressor and to shed light on the Darkness that knows our name.

I sat at the very edge of this 69,000-acre lake with the water lapping gently at my feet early Saturday morning, almost like it was trying to tell me something. "God is here, look around," it whispered to comfort me as I anxiously brooded. What confidence we can have just by seeing the signs that God has created for us that he exists. In the letters to the Romans, Paul talks about the evidence of God’s existence in chapter 1 verse 20 just by looking around at the world in which we live. The evidence is His creation of this world, the circle of life, the environment, the seasons, the cosmos. But, without being brought to the valley, without the view from this perspective, would I have noticed those signs that show God’s handiwork and give me confidence that he is in control. I’m not sure that I would know the power of those signs so intensely if I was not looking out from under the Shadow.

We enjoyed the seeing the swarm of bats awaken and take flight in the night during our camping weekend. We would not have known that such a show was about to open had we not been shown the signs.

Please, remember to send your letters to St. Jude this month as part of Eli’s “Give Back when I Go Back.” Mail an encouraging card or letter to “A Special St. Jude Patient, 262 Danny Thomas Place, Memphis, TN 38105.” Please, include somewhere on it that you are a friend of Eli the Eliminator, and if you do not want to use your return address, you may use 107 S. Marion Street, Athens, AL 35611. You may also mail to “101 N. McLean Blvd, Memphis, TN 38104.” If you speak/write spanish, please, send a letter and write on
 the outside of the envelope that is for a “spanish-speaking patient only.” If anyone needs cards of postage, please contact me privately. Remember Nolan’s mother Brittany and his siblings, and Brayden, his mother Maranda and little brother Mason.

Our journey from here may be about to get interesting. Looking into treatments, dealing with the house, and my bumbling toe-dipping into the world of homeschooling. Thank you for sticking with us and sharing Eli so that he may be lifted in prayer to our Creator.


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