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Sunday, March 29, 2015

Trials

Trial: a test of the performance or suitability of someone or something

The first time "trial" really meant something to me was July 2007 in a doctors office with my mom (4 months post brain tumor diagnosis) and dad. She was a partially decent candidate for several clinical "trial" studies for treatment of her GBM. I guess you realize in those times that standard protocol treatment for a terminal cancer just isn't going to cut it. You're really willing to go out on a limb and risk something to gain your normalcy of health back. (I say all of this as if I really know that's what my mom thought...but at least that's what we thought for her!)  many of the trials only accepted 1-10 new patients/phase or year, or only had a <10%survival rate because there were only 4 people that had completed the trial case at the time. But the goal is for these mad scientists to prove that something can be effective. And they push the envelop as far as they can until they realize it can't be pushed anymore and then they back off to find the perfect ideal solution for harmony and killing the tumor before the tumor kills the patient. Most patients say, "well, what have I got to lose?!" They know the cancer will eventually kill them, why not try a treatment that might cure them?

So we started looking at trial studies. 
For some reason, I had been given much peace about one particular study her doctor had placed before her. And it was far out. Mom was the only patient to enter the study in the area. She would undergo a second brain surgery to have a catheter inserted right on top of the tumor bed, and a flap of her skull would be removed. From this catheter a little port would stick out that could be accessed on a weekly basis and she would recover 3-6 doses (it was a lottery draw on her dosing!) of a drip of medication that would be forced through the port into the catheter straight to the tumor. The meds....get this....GIANT YELLOW ISRAELI SCORPION VENOM! Along with some radioactive junk. It apparently was supposed to go crazy on the tumor. So we signed up. Two weeks after surgery she got the first dose. Problem. Second dose, same problem. It didn't want to stay in and it kept, grossly, leaking out of her incision from the surgery. After a couple of ER trips and re stitching, a unanimous decision was made for SURGERY #3 just about a month later to remove the catheter. We felt as if we had gotten no where. Two unnecessary brain surgeries made for more difficult recovery. It meant there needed to be a new trial. She proceeded to move through two other clinical trials, one of which was granted FDA approval shortly after her death (and she was a POSITIVE statistic on it bc it was helpful) but we rejoiced that she was able to be a part of such a great movement (WOOOOOHOOOOO). 

That was 6 years ago. It's unreal how much life and science changes and how technology grows. I was absolutely floored and glued to the tube tonight as we watched 60 minutes (yes, it's kind of a family thing on Sundays) and they did a story on GBMs and treatment...a new trial, using the polio VIRUS to anielate the tumor. And it apparently works. Like, for real. 

One girl, tumor in 2012, recurrent in 2012, it's gone now. Unbelievable. I was emotional the entire time. Sad that mom could get that treatment. Happy for the patients that can receive it. Disheartened for those patients who have hope in the suitability and performance of it, but it proves too wreck less on their body and the cancer kills them anyway. It brought back such memories of those moments of having to make the decisions of whether or not to join the team of this trial case or that trial case. It was our choice. 

But most often, we don't always get to make the choice for our own trials that we face. In fact, if we had it our way, we would mark our name off every list and hide in a hole and never test out our performance at anything so we wouldn't cause our own selves to fail. 
But I'm reminded tonight of one evening that I sat in a bunk bed at the hospitality house across the street from the hospital after that last surgery wondering "what's next?!" and I was reading my Bible I turned to Peter's encouragement to his friends who were scattered and feeling a little helpless themselves and he tells them this: 
In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. (1 Peter 1:6-7 ESV)

The suitability and performance of something may fail....but HIS praise shall forever be on my lips. 



Sunday, March 22, 2015

In step



I had a chance to run the other night so I stepped out for a quick 2 mile jog. I pushed hard and was able to keep up with myself and even sprinted the last half mile. I was such an avid, GOOD runner before kids. I ran a half marathon in 1:45. I loved to run. Now, I average a run in every 6 weeks. I certainly can't claim the title of a runner anymore. I've lacked the training, so it's hard to keep up.  Maybe one day I'll have a chance to get back into it. 

The scripture I've been praying through this week comes from Paul's letter to the Galatians and he encourages this:
"If we live by the Spirit, let us also keep in step with the Spirit" (Gal 5:25)
So I've been praying that God would show me what it really means to live by and keep in step with the spirit. And what that really means, is The Lord just uncovering every single piece of nasty rotten sin in my bones. 
"Amanda, you can't keep in step with the spirit when you aren't being patient with your children. 
"Amanda, you can keep in step with the spirit when your pride gets in the way of serving others."
"Amanda, you can't keep in step with the spirit when your gentleness is replaced with harsh and quick bitterness and your "slow to anger" goes flying out the window."
"Amanda, I have called you to maintain unity and peace in your family, among tut friends, in your work place, and all around you."


I was especially convicted of my shortcomings in this (mainly my child rearing in these last days) after reading what is such an encouraging note of reminder to the Ephesians. If I fail to recognize my need for this training and aid from the Spirit himself, I'll never stay in step with the Spirit. But here's the ultimate promise:


But grace was given to each one of us according to the measure of Christ’s gift. (Ephesians 4:1-4, 6-7 ESV)


The Cloud

We love watching the clouds. As a child I remember lying in the grass cloud gazing and dreaming of the animals that would change in the sky, the dragons that would fight the large hippos, the big bunnies that would take over the puffy choo choos, or the big candy bar treats that would look so tasty. So naturally, I've instilled this imaginative play with the girls and M especially finds such joy with it. Some afternoons that Lydia naps we will go outside and see what we can find in the sky. I remember on our trip to Mississippi last summer we probably spent a solid hour staring out the windows while driving making up what we saw and trying to point out to each other to see if they could find it. 
The other day when I took this picture we had just been cloud gazing and I didn't have my camera on me, so later when I had a chance to snap a photo, I realized that the clouds were no longer puffy and fun and imaginative anymore. They were dark, almost creepy like, turning stormy and trying to cover the sun. Moving and changing within an instant, as if to say: "the time and season has past, move on." But it was too gorgeous of a shot to not take. 

I've been enjoying my reading through the Bible over the past few months (following a 2 yr reading plan by The Gosple Coalition-and actually staying on task!!) and deepening my study in Bible Study Fellowship on the Life of Moses (Exodus-Numbers). In several accounts there is discussion about this "cloud" that hovers with the Israelites, guiding and directing them, protecting them from the enemy as they leave Egypt, and commanding them at camp. This "cloud" was more than just a puffy substance in the sky-it was actually the presence of The Lord himself (YHWH)  that desired to be with His people. He was helping them along the way as they were leaving their past life of slavery with Pharoah and guiding them on their way into the Promised Land. Exodus 13 explains that the cloud never left the people, whether by day or by night. 

But in Numbers 9:15-23 there is a special passage about the cloud, that speaks about simple obedience and love and I have read it and re read it over and over again. Because it's a beautiful picture of God's love and desire to be WITH his people and with me. Read it for yourself: 

On the day that the tabernacle was set up, the cloud covered the tabernacle, the tent of the testimony. And at evening it was over the tabernacle like the appearance of fire until morning. So it was always: the cloud covered it by day and the appearance of fire by night. And whenever the cloud lifted from over the tent, after that the people of Israel set out, and in the place where the cloud settled down, there the people of Israel camped. At the command of the Lord the people of Israel set out, and at the command of the Lord they camped. As long as the cloud rested over the tabernacle, they remained in camp. Even when the cloud continued over the tabernacle many days, the people of Israel kept the charge of the Lord and did not set out. Sometimes the cloud was a few days over the tabernacle, and according to the command of the Lord they remained in camp; then according to the command of the Lord they set out. And sometimes the cloud remained from evening until morning. And when the cloud lifted in the morning, they set out, or if it continued for a day and a night, when the cloud lifted they set out. Whether it was two days, or a month, or a longer time, that the cloud continued over the tabernacle, abiding there, the people of Israel remained in camp and did not set out, but when it lifted they set out. At the command of the Lord they camped, and at the command of the Lord they set out. They kept the charge of the Lord, at the command of the Lord by Moses. (Numbers 9:15-23 ESV)

As it was always. The cloud covered them. God's protection was over them. Always. He told them when to camp and when to go, and they listened (remember, this is in the middle of quite a grumbling, disobedient time in the life of the Israelites so that in itself is a big deal!!) they did exactly as they were told to do as God's protection and love surrounded them-as it always had. The Israelites seemed to suffer and grumble quite often, but they were always protected and provided for. Always. And as it always will for me. 

There is such great comfort of God's protection and provision in life.  May we always know the beauty of the cloud that encamps around us to protect and provide. 

Tuesday, February 24, 2015

How to get a good night's rest

1. Work a fully normal day for the first time in almost 3 weeks. 
2. Get a massage for the first time in 3 months. 
3. Take the kids grocery shopping. 
4. Skip afternoon for said grocery trip. 
5. Come home and move straight to kitchen clean up and dinner prep that takes you over an hour to make. 
6. Eat dinner in less than 15 minutes. 
7. Transport the entire family in caravan to church for meetings and Bible study. 
8. Switch off kids and regain them after first meeting. 
9. Come home, bathe girls, put in bed by 745. 
10. Take bath with a pound of Epsom salt and drink a glass of wine. 

Then collapse. Best. Sleep. Ever. 

Thursday, February 19, 2015

Because He Lives

My insides have had time to weep today, though most of the while we've kept busy. Finally back to school after 15 days of being at home, there were things to get done, I had a doctors appointment, and of course the busyness of the usual day overtook me. But certain moments of the day caught me off guard and wrenched me on the inside and twisted my tears. Our school director brought in chicken minis from CFA today-while a tasty treat, the smell was so vivid-I remember eating them the morning mom died-A friend had brought a platter to the house that day. Y'all, I CRIED OVER CHICKEN MINIS and it was only 10 am!!! 
After school it worked out that the girls were going to be spending some time with Nana (J's mom) and Aunt Emily and her three boys, so I had a bit of time after my appointment to grab a yellow rose, as I do every year, and drop it by the most gorgeous cemetery ever. 


As I stood in the bitter cold, I dropped the rose, and the Spirit came over me to sing: "Because He lives, I can face tomorrow, because He lives, all fear is gone. Because I know He holds the future, and life is worth the living just because He lives." 

My mind was flooded with memories of standing in the church just a few hundred feet away singing that hymn beside momma and how she used to belt the chorus (she couldn't carry a tune, but she'd always know the melody of the chorus-and it was the Gaithers, come on!) on Sunday mornings right around Easter. 

Just thinking of those words, words that she really thought were true-life WAS worth living to her as she "fault life's final war with pain"- over the years there has been such profound emptiness, beyond words to explain to anyone, of what's it like to lose my mother at such a young age. BUT in those same years, there has been ABUNDANTLY more fulfillment and joy and overflow of His grace, blessing, and provision in my life. Yes, I still cry. Yes it still hurts. Yes, this day was sad because I miss my momma. 

But there's a greater joy in the resurrection of Jesus. And there's no fear for it really is a life conquering death scenario every. single. day. And life is worth the living simply because He lives. 

Yet a little while and the world will see me no more, but you will see me. Because I live, you also will live. (John 14:19 ESV)

Wednesday, February 18, 2015

My letter

Mom wrote letters to all of us while she was still in her right mind. I'm not exactly sure when that was, but it was probably before Christmas 2008. She wanted us to have something to hold on to for as long as we could after she passed. I am forever thankful that she did. The letters were specific to each of us, and they don't make a whole lot of sense, but they still are so special and so loving. She was so sad to have to leave the earthly world. She knew she was going to miss some of the most exciting parts of my life raising children.
 Every year, around these days, I pull out the letter to read, and let the water works flow-can't help it. I love looking at her handwriting, remembering our special words if endearment we shared, and hearing her voice as she reads the letter to me. She told me that "no one could ask for a better daughter" but I'm pretty sure I got a steal of a deal when I got my momma. Hands down. And for all who knew her, they'd 100% agree. 

Saturday, February 14, 2015

HAPPY BIRTHDAY LYDIA!!!

This week we celebrated Lydia's birthday!!! As it usually happens every year since her birth, nothing goes as planned. 
Her birth year, well, she was born on February 11 when she should have waited 6-7 more weeks before coming. 
Her first birthday year, she was sick with bronchitis/rsv and I was in the mountains and we had to rearrange her birthday party to accommodate because she later got the stomach bug. 
Her second birthday, it snowed a good bit and we were all stuck around the house and had a limited celebration after the roads cleared. She was also sick with bronchiolitis. 
It never fails. 
This year, she again was sick. She still is sick. It's been a long, now on day 10 of sick. What started as the stomach bug, turned into possible flu, then bronchitis which is now some other type of undiagnosed infection. Fever for 9+ days. So we have all been held captive to the house since last Wednesday night. 
Sweet L has had the toughest week ever. She's been such a trooper through countless breathing treatments, the thermometer being shoved in her ear, me forcing Sunny D down her throat. Ready to figure out what the deal is and solve the problem. We all are. I sure hope this won't be a trend for every birthday year...

Sweet Lydia,
You mean BEAUTY and you bring grace and simplicity to our family. You snuggle with us when we need it most. You are goofy and silly and carry a confidence that is growing and growing each and every day. You love to say prayers. You love your friends. You are so sensitive and caring. You are so observant. Your memory is uncanny!! You are learning so many things from your big sister (good and bad!;))! You feel remorse for your wrongdoing immediately and are apologetic and show love when you have hurt your neighbor. You are becoming such a little lady. 
Our prayer for you has always been that "God would count you as one of his own people. And that he would give you a singleness of heart and action so that you will always fear You for your own good and for the good of your children. And that He would never stop doing good to you, and inspire you to fear Him so that you will never turn away from Him." (Jeremiah 32:39-40)

Happy 3rd birthday Lydia Lou, Lydibug, Little love, LEG!!!!