Thursday, November 15, 2012

The countdown is on.
I was successful in avoiding housework one day a while back by wasting most of the pre-girls-getting-home afternoon hunting a simple third-party code for a countdown clock to put on this site. I wanted to have a subtle visual reminder for blog visitors of Eli’s first upcoming post-treatment MRI. I found one that I couldn’t get sized right; then I found one that I couldn’t get the clock to count down from the correct date; then I found two that wouldn’t load at all; then I found one that I could manipulate elements only to find out when I entered the code it also wouldn’t work. So, finally by 1454 hours, I had found a simple, plain countdown clock. It is exactly what I wanted. I got it loaded and working. I sat back in satisfaction of my success and read “52 days.” Oh, my, that’s all. I loved the simplicity and subtleness of the clock, but upon reading the time my eyes suddenly locked on the numbers, the text overtook the screen, the neon green burned my retinas and it screamed at me “52 Days”. That’s it, that’s all, 52 days! Only 52 days until we know if the sky is holding, falling, or crushing. Only 52 days until I know if I am watching Eli play and laugh while a monster kills him from the inside out. Only 52 days until I stand toe to toe with Satan-again. I suddenly hated the clock on which I had willingly wasted so much time. But, it served my purpose, it provided the information, it was exactly what I wanted.
Eli working hard at PT with Mary. He begins speech therapy
next week. His speech issue is not completely related to the
treatment. He has always needed speech help, typical kid
stuff, but the hearing loss at high frequencies has hindered
it a little more. For example, he can't hear the "th" sound, so
they have to try to teach it to him by how it feels on his throat.
A common lesson through many fables and stories that are centuries old even is to be careful for what you ask. I think sometimes one thing that makes prayer so hard is being honest with ourselves about what we want. God says through the inspired writer Luke that if we keep asking we will get that for which we have asked. But, what is it that we really want, for what exactly are we really asking. To illustrate this, here is an example of what could be a face to face conversation between God and me. “So, Kristie, tell me what is it that you want,” God asks. “Well, Father, I want Eli to be healed completely, grow up to be a legendary football player, a cancer-curing doctor, a devoted husband, a loving father, a spiritual leader in his community and have a home in heaven with you,” I answer with pride and confidence. “No, tell me what it is that you really want,” He asks again. “Ok, well, Father, I want Eli to be healed completely, be happy, lead others to you and have a home in heaven,” I answer with hope. “No, I want to know what it is that you actually, really want,” God asks again. “Ok, well, Father, I honestly ask that Eli lead others to you and have a home in heaven,” I answer with fear. “Done,” God says in 1 John 3:22. Because when I peel away the layers of this world, and am faced with the heart of it all, it is a simple want that has been answered just as God says in the Bible it would be. The Bible is very clear that God hears the prayers of believers and gives them that for which they ask according to His will. Obviously, I can’t pretend to be any kind of biblical scholar, because anything I write would give me away pretty quickly, so, please feel free to disagree, highlight discrepancies or inaccuracies. I’ve been trying to study prayer because I believe it to be a tool given to us to use when we are faced with trials. And, I mean “when”, not “if”.
This is the typical set-up for me and Eli. Me on the laptop
and him working diligently on something of great importance.
He has been so good to work on homework or draw. Notice
the missing buttons on my laptop. That's the W and the X.
The 3 and the Z are on their way out... or off. Good thing my
fingers have a better memory than I do.
I can’t seem to find anywhere in the Bible that hints at the possibility of anyone cruising through this earthly life without feeling Satan’s touch. The inspired writers Peter and James tell their Christian readers “when” they face trials, and Jesus is recorded by John as saying to His followers “In the world you will have tribulation.” Paul tells the Christians at Corinth that God will provide a way of escape for them to endure their trials. One of those ways, I think, is a tool called prayer. A tool is used to complete a task or make something happen. But the user of any tool, in order to use it properly and successfully, must be trained in the use of said tool. God didn’t just hand us this powerful instrument and say “Good Luck.” He gave us a simple training and instruction manual for prayer through inspired writings that are compiled in a book that we call the Bible. The Bible tells us the who, when, where, what and how of prayer. Specifically, in our case, I believe the use of prayer is of no less importance in Eli’s survival than surgery or any of his treatment. I have no doubt he will not survive this without the proper, constant, pounding use of this tool. Using a tool to complete a task is work. In the letter to the Corinthians that I mentioned above, it says in chapter 10 that a way will be provided for our escape so that we may endure the trial. It says “endure”, in other words, it’s going to take a while. It’s work! Wield prayer, just as the boy David did with his simple slingshot against the giant. Prayer is much like that slingshot in that it is not a complicated tool, simply made, but still David had to know how to use it in order for it to work effectively and then used it aggressively. The Bible says that David “ran quickly toward the battle line.” David used his tool expertly, intently, and aggressively giving God the glory for the power behind it. Prayer is simple, and often times casually shared almost like a cordial greeting, but its power is not to be underestimated or under appreciated. I hope that each of you is able to take ownership in Eli’s success for your work and comprehend the weight of your prayer activity in his life particularly, but the reach of which we may never know on this side of creation.

This is the girls' stack of clothes to try on. We were generously
given to for the girls, and this stack is only part of the donation.
It took about three plus hours for all of this to be tried on
because each took drink breaks, threw clothes at each other,
fussed with me about whether a piece was a keeper, played
tugowar with Caleb with a piece, or just sat
in the floor and stared.
I mentioned the clock on the blog, how it mocks me now, much like the juicer that sits on the counter. I’m really feeling the pressure build as the calendar gets shorter and shorter. I started this post, obviously, 24 days ago. It is difficult to have chunks of undisturbed time for important chores that benefit everyone in the house, much less chunks of quality time for me to do something that yields no completed housework or chore or appointment… or field trip. I’m still spending some time preparing for plan B, C, D, and E if the cancer is back, so that takes huge handfuls off the clock, usually the late night hours, which dilutes the more useful hours of the next day. But, I have so many fun plates spinning right now, I can’t wait to share a couple of them, but for now I wanted you to know that we are excited to celebrate Eli’s 8th birthday on Saturday. His actual date is Dec. 3, but looking at our calendar and how everything is crammed between now and December 11 (which is when he and I will leave for Memphis), we were running out of days. So, we are pulling that off on Saturday (after having had my oldest daughter’s birthday party last Friday) at the local movie theater. Management has agreed to donate every other adult ticket bought for Eli’s party to St. Jude, so I am really excited and hope we sell out the theater before the doors even open. I mentioned above that I still spend some time just reading and sifting, so during one of those late nights I found this article about childhood brain tumors which I think is very good. It is a 2007 article, but it is written pretty plainly, only using the big words if necessary, so I wanted to share it. Eli has medulloblastoma, which is mentioned in the article, and if you want to research it further his is in the 3 / 4 subgroup (as opposed to Hedgehog or WNT).
The kids after church one Sunday morning.

If you haven’t heard already, Ryan did not get good news from his latest MRI. The tumors are growing fast, and they have decided against oral chemo because his ANC is extremely low right now and to add chemo on top of that would make him incredibly sick, unable to enjoy these days that he and his family have. Jayden has begun having some small seizures, and sleeps most of the day due to medication, but reports are that he is actually doing pretty well. I read about Blake recently, and he has completed treatment and seems to be doing as expected. Myah is beginning her fifth and final round of chemo on Friday. Amris is having an MRI which will determine if she can have radiation at this time. Also join Bayleigh’s family in prayers of thanks that her tumor has not progressed. As I’ve said, part of my routine is to hunt facebook pages and caringbridge sites for children fighting the same thing as Eli so that I can kind of loosely plot out their journey, the hospital, the doctors, the treatment. On some occasions, if the child is doing well, I might contact the parent, but mostly I just read the post histories. It’s not an easy read for me for many reasons. But, comparing our own story, it is striking to see how God’s hand has prepared us, led us and protected us. So far, we could not have had an easier road on which to travel through such a nightmare. There will never really be an end to this journey. Cancer is now a part of who we are. We don’t avoid the “C-word” as many families do, which is fine, there is no right or wrong on that. I’m just more of a head-on kind of gal, so for me, I’d rather say to my kids “Here is what it is, this is what we gotta do.” I’m sure this will not be the last time our kids will fight cancer in some way, either as a victim or caregiver, so I prefer they know their foe, be less afraid from experience which will build stamina for our fight and prepare them for any fights lying in wait along this road. But living within the day we are given, knowing what I know now, seeing Eli run, be silly, sing, do homework, I go to bed at night amazed.

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