Friday, May 13, 2016

Thy Will Be Done and the wait we wait...


As I sit here, in my best friend's house, the same house I was at the week before we were diagnosed, I'm reminded of memories.....Almost 4 months ago I was kinda stressed out about having a baby and paying 2 mortgages, and she asked me to come down and spend some time with her...she said the Lord told her to invite me but she wasn't sure why....well a week later we got our diagnosis.....

And here I sit again....with a beautiful sleeping baby beside me, waiting for a call to know if we have met counts or not.....As I think back over the last 4 months and how life has changed, I can't help but be blown away by all the Lord has done....in every moment I felt alone, God has done something, shown up in some big way....and I know he will continue to do the same thing...
Sweet cuddles

Deuteronomy 10:2New Living Translation (NLT)
21 He alone is your God, the only one who is worthy of your praise, the one who has done these mighty miracles that you have seen with your own eyes.


Once again, I am in the place where I don't know what is coming next....Our next phase of treatment is called INTERM MAINTENANCE .....aka..Hospital Time....because we were bumped to the High Risk category, this phase now has to be done in the hospital.  Whenever we meet counts, which we found out this afternoon, after I wrote most of this blog, that we didn't make counts... but when we do we will go into the hospital.....When we meet counts, Alayna will have a Lumbar Puncture in the morning and then start 24 hours of methotrexate.....Now methotrexate...yea, it's not a fun chemo AT ALL!!! The biggest side effect is mouth sores.....We will receive 24 hours of this drug, vwhich will basically kill every cell in her body, basically causing her to die....so after that 24 hours she will received a rescue drug for another 24 hours that restores the good cells and allows the bad cells to die.....After those fun two days, we wait.....we wait for the medicine to clear out of her system....she has to clear at 3 different levels and if you miss one of those levels, you start over....So there is a minimum of 3-4 days in the hospital....even longer if she does not clear the medicine or has any secondary infections (which we know the Lord will protect us against!).....once she clears the medicine, we are able to go home (PRAISE THE LORD!) and we start the process all over again...

We will be going through this process 4 times....Making counts, going into the hospital....clearing levels....and then going home.....4 hospital admissions... Yes, we will hopefully get a week and a couple days off during the hospital stays...but being in the hospital for 4 days in a row or more is definitely a challenge...Addyson will have to go full days at school while I am at the hospital with Alayna and Avery all day, and Ron has only about 6 hours to work, then pick up Addy and head to the hospital where we will then switch....I am sure dinner will fit in there somewhere but who knows....Honestly...we have a plan, but we won't really know exactly how it is going to work till it happens.....

I really try not to complain....but it's hard....I don't love being in the hospital at all....We go stir crazy and I hate just sitting there all day....we try to go on walks...ya know me and my Fitbit challenges...I like to do circles around the floor...I am sure the nurses think I'm insane...but it's the best I can do when I don't get to go run.....I hate not being able to run...it's like my sanity...but Alayna's health is more important than my desire to go run....

My running partners as of late
It's definitely a challenge, hospital life, and one we plan to take on with hope and encouragement.....we realize we have been blessed...there are so many people in the hospital in way worse situations than we are....in fact, one of my sweet friends son we have met in the hospital just found out her son's tumor is growing and the doctor's have almost given up on him...and my heart breaks for her....But we believe in a God of miracles and healing.....as we enter this next phase and the challenges that go with it I have to remember, once again, that we were called to this....Every person I meet, as I make my laps around the floor...every single family and patient....they need this hope we've found....They need to know it's going to be ok and that God truly can heal them....and I get to be that hope, to bring that hope to them....I may be the only encouragement they see all day....our friends Kristin & Jordan, who have also fought cancer with their daughter, tell a story about how they had a little coffee bar in their hospital room with good creamer and kcups and a Keurig, and how people knew that... and they would come to their room and they would just get to encourage them....I love that idea so if anyone wants to donate a keurig they aren't using and kcups, we will definitely take it lol!!!

Once again, the Lord reminds me that this whole entire journey isn't about me....it's about what the Lord is doing through me, through us, through Alayna.....

I have really been enjoying the @Running with the Giants" series from our home church, Church of the Highlands...it's been so encouraging to hear about all these amazing Giants of the bible and how their stories can encourage us...and one thing Pastor Chris said in his last message has really encouraged me....patience isn't about getting to the end of this battle, it's about what God is doing and teaching you during this journey......I know and believe we will make it through this next phase...but what does God want to do in my heart, in our family, through Alayna's story in the mean time???.....if I rush to get through it all, I will miss out on what He's teaching us.....so as we enter this phase, my eyes are open wide trying to find that next person to encourage and bless.....sure....hospital life really stinks, but we will make it....He's promised nothing is too hard.....There's so many things I could worry about.....how am I going to cook dinner and keep my house put together when I am never at home???...how are we going to pay our bills when Ron isn't working a lot and neither am I??? How is Addy going to handle going to school for full days??? How am I going to get any time with Ron????

WORRY......if I let it, it would take over.....but I remember that worry causes nothing but stress and is useless
James 1:5-8 
If you don’t know what you’re doing, pray to the Father. He loves to help. You’ll get his help, and won’t be condescended to when you ask for it. Ask boldly, believingly, without a second thought. People who “worry their prayers” are like wind-whipped waves. Don’t think you’re going to get anything from the Master that way, adrift at sea, keeping all your options open.

It doesn't make sense to live in fear, so we aren't.....Satan wants us to worry and be fearful...but one thing is for sure...the Lord has truly provided for us.....financially...with friends making meals....even with a few date nights....and given us so much joy in this whole process....Avery is such a sweet baby and so cuddly and sweet....Alayna keeps us laughing and smiling with just how cute she is and she has the best attitude ever...and Addyson is just so smart and her behavior is improving so much....we have dance parties when we have bad days....we get in the word...we listen to worship....we choose to keep going in all of this...we don't have answers, but the Lord continues to be faithful.....and this phase, although it is scary, is just another part of the process.......

Hillary Scott, from Lady Antebellum, has a new song from her new album she recorded with her family, called "Thy Will..." This song is amazing....and the words....wow....

“I know you’re good / But this don’t feel good right now / And I know you think / Of things I could never think about / It’s hard to count it all joy / Distracted by the noise / Just trying to make sense / Of all your promises / Sometimes I gotta stop....
 Remember that you’re God / And I am not 

I am not God.....But God is God and God is good...he's taken care of us this far and I cannot wait to see what He does next.....Thy will be done......

PRAYER REQUESTS:

1. Side EFFECTS! We are believing during this next phase we will have NO side effects from this crazy chemo...we will have no mouth sores, no secondary infection, and we will clear our levels and make counts with no real delays.....she has been such a trooper and we know that the Lord can keep her little body safe in all of this!!!


Psalms 107:17
Then you called out to God in your desperate condition:
he got you out in the nick of time.
He spoke the word that healed you,
    that pulled you back from the brink of death.
So thank God for his marvelous love,
    for his miracle mercy to the children he loves;
Offer thanksgiving sacrifices,
    tell the world what he’s done—sing it out!

2. OUR HOUSE!!!! There hasn't really been any real change until tonight...we got some kinda good news but not sure how it will pan out.....especially since our refrigerator and shelving from the closets were stollen....there has been a lot of negative talk about our house...why don't y'all do this?...why don't you change this?...and we just can't listen to it...when it's time for a change, God will show us....but we keep having showings and people keep looking at the house...we had 3 showings this week....but no offers yet but maybe soon...we are almost $20,000 below comps....we just have to believe that the Lord will sell this house in his timing......so please keep praying and keep sharing about our house... And that it will be the perfect family we can share this story with...that our beautiful house we designed will bless them like it blessed us....

http://www.zillow.com/homes/1351-oxford-manor-lane-birmingham-al-35242_rb/?fromHomePage=true&shouldFireSellPageImplicitClaimGA=false&fromHomePageTab=buy

3. WORK!!!! So thankful to the sweet friends who have helped us out by having a jewelry party or Facebook party for us....it feels so awesome to get back doing what I love...blessing women with free stuff, sharing our story, and telling others about all the Lord has done....so thanks to all that have stepped up to our challenge....we are believing for even more bookings as well.....But prayers that Ron would have consistent work and we would keep being able to pay our bills....this week has been slower all the way around, and the Lord knew we need a slower week...but praying that work continues to come in and that the problems we are having with our insurance will be resolved....and that we can make bad days better with sweet friends in the middle of it all....like we did this week 

Sweet Time with the Smith Family

besties

Corie Bell and Avery Grace


Selfie Traditions and Sweet friends
We also enjoyed a quick trip to Jacksonville this week to help some of our sweet friends with their floors and spend time with them!!! Prayers for continued happy days in the middle of our storm

4. INSURANCE....I have been battling the insurance company for over a month now...they randomly charge us an additional amount this month that is almost half the cost of our normal bill....plus the medical bills are rolling in...I don't know what to pay and what not to pay....I've spend numerous hours on the phone with the insurance company and market place...I am just over it.....please pray these details get worked out and that stress would be gone....


Hebrews 6:19
This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary. 20 Jesus has already gone in there for us.

5. COUNTS!!! We didn't make counts today and we aren't sure when we will. Most people I have talked to have been delayed at least 2-3 weeks....which means you don't get into maintenance till even longer. We are also trying to plan things for the summer and trips with work, etc...which is almost impossible. We go back next wed and since today our ANC was only 28 (I know right?) and we need to get to 750, we may not make it even this week....but prayers the Lord would make it happen in His timing and we could enjoy life in the process. With an ANC of 28, we are on strict fever watch and have to avoid any chance of sickness from anyone or anything (glad we went to Disney before we couldn't for sure! Our doctors are ok with being outdoors and we clean our hands constantly when we are there, but we avoid the rides and mostly just see characters and walk around, and since Animal Kingdom is basically all outdoors, that has become our favorite park!!) 
Disney with our sweet Birmingham friends 

Real Men Baby Wear

Animal Kingdom Fun
Thanks so much for the continued prayers......keep them coming........we love you all and are believing for amazing things in the next two months.......