Friday moves closer, and Amanda seems to be bouncing back slowly...

Yesterday, it seemed that Amanda finally turned a corner. Up until then, she has continued to be extremely weak and felt bad all over, with the occasional headache.  So when she woke up feeling better and seemed to have a little more spunk, I was so thankful.

With it being Tuesday, she wanted to go to ROCK for her lesson.  The lesson was very easy-going and calm for her, but she still was ready to call it a day after 30 minutes.  By the time we made it to the car, she was feeling pretty miserable and ready to come home and go to bed.  After resting for a few hours, she was feeling better.  She felt good enough for a ride out to Uncle Powell's to see Georgie.  How that girl loves horses.

I finally completed and ordered our photo book from our Montana trip.  How fun it is to look back at all the adventures we had!  What really blows my mind is that May is upon us.  It does not feel like that trip was four months ago.   Time is a funny thing.

Personally, I have been in somewhat of a slump lately.  Well, I don't know if slump is the right word, but I have been feeling a little adrift in my storm of emotions.  It's hard to see Amanda feeling like she has when she has been doing so well.  The mental battle that is waged daily is exhausting and frustrating.  The questions of symptoms being due to an increased chemo or to "the change" is at times overwhelming.

As I went to bed last night, late from trying to get Amanda to sleep, I wondered how on earth I used to write a post daily, in the evening.  I would sometimes stay up to midnight working on a post.  These days, I don't think I would be able to function if I kept that schedule.  I am not sure how I did it then!

I was telling a friend yesterday that I haven't written as often because I worry about saying the same things over and over again.  As I later looked back on that conversation, and thought about what she said, it dawned on me that of course there will be things that are said over and over.  Our journey right now is constant, it is unchanging as far as our bottom line and what we are fighting against.  I'm okay with repeating myself at times.  Especially when it comes to how I am coping day by day.  Because, you see, every day, as I look at her beautiful smile and see her eyes light up as she talks, or when they fill with tears because she is upset or mad - it is during those times that I cling to the moment and my prayers don't change.  I still pray that God will carry her through this time and heal her so that we might share of his mercies and give all glory to Him for years to come.   I pray that she will be a walking testimony of his greatness.  I love the thought of beating something that medically doesn't make sense, because to us - it will.  Our God is big enough.  And yet, in the next instant I also know that His will and plan for her life may not be what I want it to be.  So I lean into his grace as far as possible and just trust him, each day.  And I go through that same sequence daily - sometimes many, many times!

My life right now seems very small.  I feel like we are in a bubble, going through the same routine and in a weird way there is security in that.  We are actively doing something to fight this disease.  It is the months ahead that I cannot bear to think about.  I have been here before and am back to feeling like a part of me is holding my breath, waiting for the next 'something'....this week, it has been waiting for Friday to see what her counts are and if she is able to start chemo.   The MRI is always at the back of my mind, wanting to see if this increased dose has made a difference, to see if that area we are watching has changed any to give us clarity on what we are looking at.  (Especially since they are not sure what it even is! *Sigh*)  I pray that we keep the report of "no active tumor."  While I may plan things for next month, or the next  - it still seems that for me, life doesn't exist beyond this day.

So what's a mom to do?  Cherish each day with my family.  Love each other through all things.  Make wonderful memories, full of laughter and tears.  And each day, live to glorify God in all that we do.

Romans 8:28

And we know that for those who love God all things work together for good, for those who are called according to his purpose.

A beautiful day for a horse ride.

The day was even more special because Dad came along!

The simple things make us happy, like the velvet soft nose of your horse...

A look back at our week....a rather blah week three....

This has been one of the more emotionally draining weeks I think we have had in some time.

It started Sunday night when Amanda said her left hand felt hard to close.  With that being the side of her body that her symptoms presented themselves on last year, it was an immediate concern for me.  Talk about your heart stopping - my first thought was that we would be going to Dell for an MRI.  She told me this during church so I was really unable to do anything about it for the next two hours. Those were two agonizing hours, filled with prayer and pleading for strength.  Once we had the chance to talk to her in private, she said that she thought it was maybe because she hadn't been using her arm and hand as much.  If that was supposed to make me feel better, it didn't.  Since it was late that evening, we calmly told her to let us know how it was doing in the morning.  (Like, "Oh, okay, well, just keep us posted" was what came out of my mouth but my heart was shouting "QUICK!  Air support immediately to Dell!!  Let's check this out - STAT! Clear the MRI schedule, we are on our way!!" ....and that is why I am not in the medical field - calm and cool is NOT who I am.)

In regard to the left hand issue, we remembered that on Saturday, Amanda had shot her bow and things started make a little more sense.  Her left shoulder was hurting her on Monday and that too could be explained by her using her left arm to hold the bow while she shot.  So, taking a deep calming breath, I just checked those off as sore muscles from being used in a new way. Check, check - move on.  From that point, however, it seemed that the rest of the week went about the same.  The back of her knees hurt, weird pains in her neck, her left arm bothering her, headaches......every little symptom made me pause and wonder what was causing them.  So hard.  These symptoms come and go, with no rhyme or reason, so we just watch and pray, taking it day by day, moment by moment.  Amanda certainly isn't worried about them - bothered, yes, but not worried.  I need to take lessons from her sometimes.  I know that this week is probably no different than weeks past and that she is not doing anything she hasn't done every week since we started with pains here and there, on and off.  I think we are a little sensitive right now, watching for symptoms that could mean there is a change.  I am finding it hard to get back to some sense of normal. (Is there even such a thing as normal?!)

On top of all that, it seems that her counts are dropping more than usual.  (Which we knew was a possibility since her chemo dose was increased.) She has been extremely tired and at times a little short of breath.  Nothing major like in the beginning, just enough for us to notice it.   A few times I had even considered taking her on down to Dell to have her labs done to make sure everything was good.   Tom's calm head prevailed and we have been keeping an eye on her while helping her pace herself.  Her color is still good and she is not showing too much bruising or petechiae, which are all signs of a low platelet count.  She just feels yucky all over and hasn't had energy to do much, and when she does do something, it simply wipes her out.

As we have learned, watching how her body is handling the medication and the ability to stay flexible is still proving to be a necessity.  I must admit though, this whole "ability to have flexibility" continues to be very exhausting for me.

All that said, in reality, she is doing great.  I know that these times are hard, and she is weak, but my goodness - she is here, she still has her positive attitude, she is eating good and she is still our sweet girl.  We have so much to be thankful for.

We are not scheduled to see Dr. Harrod until Friday.  On Friday, if her counts are good, Amanda will start her eleventh chemo cycle.  Two more to go.   

Because of all the ups and downs of this week, I am so thankful for the hope and strength I find in Christ.  I am constantly going back to the fact that God's grace is sufficient for me and that His power is made perfect in weakness.  And boy, am I grateful for that! I know that I shouldn't allow myself to become distracted or try to fight what I cannot control, even though I often do. God is in control and he can use every detail of every day for his glory.

He is faithful.  He is merciful.  His grace is enough.  His mercies are new each morning. 

And with every breath, every fiber of my being, I continue to ask God for the desire of my heart.

Jeremiah 32:17 

Ah, Sovereign Lord, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.

ROCK, then a quiet day....

Amanda's beautiful arrangement from our rose bushes.

Speaking of beauty, the weather was absolutely beautiful this morning for Amanda's ROCK lesson.  Her energy level was great going in, but the lesson itself wore her out, so the rest of the day was a restful one for her.  After last week and weekend, that was just what she needed. 

As I mentioned in an earlier post, this week is a quiet one for her.  We will have math lessons later in the week, but that is her only appointment.   I still find myself on high alert for any changes or complaints, even though I do my best not to appear that way.  Amanda takes it all in stride and humors me.  Thankfully, other than tiring out quickly, she seems to be doing good.  

I'm grateful for another day full of the simple blessings of a quiet day at home. 

Ephesians 3:16-19
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

 

Hands on, helping tack Oakey.

Look at that sky! Wonderful weather for riding a horse.

This was her, "I'm not going to smile for the camera" face.

Girls, I think you have been spending a lot of time around each other....

Finally, such a sweet smile thanks to a compliment from Renee.

Good job today, Oakey!

Look who we got to see today - it's her Romeo!

What a fun day!

Since the boys were home today, Amanda wanted them to come out to Uncle Powell's and see Georgie.  It was a beautiful day and the entire family ended up getting to ride.

Brandon and Sandra Jo brought up Friday.

Amanda and Papa went to get Georgie.

This girl always finds pets anywhere she goes.

I rode Georgie..

..then Tom rode Georgie..

...and Amanda ended the day with a walk around the arena on Georgie with Uncle Powell.

Meanwhile, Brandon rode Friday.

Such a sweet picture.

Amanda helped Papa with Georgie.

After a good ride, Amanda rinsed Georgie down and by that point, we all would have enjoyed a little shower ourselves. :)

Brandon helped take care of Friday before putting her back in the pen.

After riding, Uncle Powell gave Brandon some golfing tips.  I'm telling you, first horses, then golf - you just never know what Uncle Powell has up his sleeve!  Hah! Maybe we could combine them and do a little horse polo! (just kidding)

I think these two were swapping horse stories...

After our fun day of riding, we had dinner with our dear friends, Randy and Sandy Adair.  They fed us a scrumptious dinner and then the kids wanted to teach them to play our favorite card game, Nerds. A few years back, Randy and Sandy took care of Brandon and Amanda while Thomas and I took evangelism classes at church.  So the four of them spent many a night together eating dinner, doing homework and playing games, one of which was Boggle.  So we couldn't end the night without a couple of games of Boggle!  We are so thankful for this family and how they have blessed our lives over the years.

It was a close game, but in the end the kids beat the adults in Nerds.

They took the Boggle game very seriously!

Sandy, Amanda, Brandon and Randy

Deuteronomy 7:9  
Know therefore that the LORD your God is God, the faithful God who keeps covenant and steadfast love with those who love him and keep his commandments, to a thousand generations

What a week!

I don't like going this many days without posting, but our week has been a blur.  I knew it would be busy!

Tuesday, Amanda had her lesson at ROCK, which went very well.  Then we were off to physical therapy.  She had another great report. Cindy is still very pleased with Amanda's progress and encouraged her to keep staying active to help build endurance.  We do our best.  :)

The rest of the week flew by.  I was at Grace Wednesday and Thursday helping in the office.  The kids spent Thursday night with Wayne and Paula in Temple, then Friday was our Watson Easter.  Saturday was our Smith Easter.   And after a long, full weekend, Amanda woke up this morning not feeling well with a headache and nausea.  We were planning on going to Lawler for their eleven o'clock service, but she felt too sick.  She must have really felt bad - she even took medicine!  She was crushed that we couldn't go, but thankfully, she perked up this afternoon and we were able to attend Crestview's Easter drama this evening.

The kids don't have school tomorrow and Tom is off, so we have another family day to enjoy together. 

Amanda doesn't have much going on this week outside of her ROCK lesson.  With another two weeks before she starts chemo, it feels like this cycle is lasting forever!

Please pray that she continues to feel well.  I can see a slight difference in how she is feeling overall and definitely think that she is not feeling as well this cycle.  She is a trooper though and pushes through it the best she can.  Her latest joy has been her flowers that we planted in the front yard and our roses.  The roses are blooming, so today she made some beautiful rose bouquets for the house.   We are enjoying spring!

Here are some pictures (okay, a lot of pictures!) from the last week and some of what we were up to:

Tom and Amanda planting flowers out front.

Another beautiful bluebonnet picture. 

Lessons at ROCK with Oakey, Sandra Jo and Kristen.

I will never say these ladies don't work hard! They ran beside Amanda as she trotted.

It's the simple things in life, like hugging your horse....

Taking Oakey back out to pasture.

Abby and Amanda helping MawMaw Watson cook.

It's amazing how quickly they find those eggs!

Our sweet little Jem was suffering from allergies, but he had a front row seat to the show.

Amanda and Uncle Stephen racing to get an egg....

The Watson cousins

The Smith cousins

Sweet moments, forever etched in my heart.

My little bundle of energy - this whole twelve, almost thirteen boy thing is a crazy ride.

Poor Ginger....she just wanted to be with Amanda.

Does it get any sweeter than this?

It's been another week full of many blessings, memories and sweet moments.  I am more than thankful for each and every one of them.

"Jesus has gone to the furthest horizon of human loss and brokenness so he can say to you: I know."  Ligon Duncan

1 Corinthians 15:55-57 (KJV)

O death, where is thy sting? O grave, where is thy victory?
The sting of death is sin; and the strength of sin is the law.
But thanks be to God, which giveth us the victory through our Lord Jesus Christ.

I started this in the Infusion Room...

As often happens, I start a post early in the day, but something interrupts me and before I know it, it is evening before I finish.  That is what happened to me today, so I'll pick up from where I left off....but first, what I wrote earlier today:

I'm sitting here in the transfusion room, with Amanda receiving her fluids while she and Tom try to figure out what game to play. They are waiting to go check out the various board and card games in the youth room, which happens to be full of people, so for the time being they decide on I Spy.  Much to the entertainment of the nurse and myself, this has resulted in Rock, Paper, Scissors to see who gets to go first.  Never a dull moment with these two.

We had a great weekend, starting with Saturday in College Station celebrating my aunt and uncle's 50th wedding anniversary.  I always enjoy spending time with family and often wonder why we don't do it more often.

I had hoped that Sunday morning we would all make it to church, but unfortunately, Amanda wasn't feeling well.  After an afternoon of rest, we did make it to the evening service for our Palm Sunday service and observation of the Lord's Supper.  Tom was the deacon serving our table. What a special moment of worshiping together as a family. 

That brings us to today, and we are at Dell for her last infusion and white blood cell booster shot for cycle ten.  Officially only two more cycles to go!!

At her weigh in today, Amanda has put on three pounds in two weeks.  Completely caught me by surprise - happy, happy, happy!!  Earlier today at lunch, Amanda said her jeans were fitting her a little tighter today, so she said she wasn't too surprised.  :) 

She did great during her port access and her labs came back looking good.  Already, we are almost finished with her infusion.  I am so thankful for these quick appointments!  

Despite our numerous trips and hours spent in the clinic, on the drive here it was as if she just emotionally wilted the closer we got to Dell.  Ten months into this and the apprehension and anxiety is still going strong.  I can understand that, but it still breaks my heart.  

These next two weeks will tell us if the increased dosage will make any impact on her counts.  Dr. Harrod doesn't anticipate a big change, let's pray for that to be true!  Overall, I think it has been a smooth cycle ten and it would be great to finish it out the same way, with no surprises or complications. 

A few months ago, Amanda had her picture done for the Children's Blood and Cancer Center for publicity use. Today, we got to see the finished product. I think Amanda was a little taken aback by how big her photo was! 

There are two of these banners (which are about 8 feet tall) and they will be used at the various parties and events the CBCC hosts.  Even though Amanda seemed a little unsure about it - I think it looks awesome! But hey, I am a little partial to that beautiful face.

Well, that was pretty much our day.  Another smooth appointment behind us.  Amanda will start cycle eleven out of twelve on May 2.

After today, we still have a busy week ahead with ROCK and her monthly physical therapy appointment for Amanda.  I will work at Grace a couple days this week and Tom is working an overtime shift in the middle of all this.  Throw in a couple of meetings and a short week at school and we have organized chaos!  The kids have a four day weekend to celebrate Easter so needless to say I am looking forward to the long weekend. 

While I still have my moments of struggle and panic, I am thankful to be at a point where I can battle those feelings with scripture and prayer and somewhat quickly regain my footing.  Thank you for your continued prayers and encouragement!  Please don't stop praying.  Prayer is powerful.  Prayer strengthens our faith and sustains our hopes.  Prayer brings us closer to God.  Prayer can move mountains. 

I have really been enjoying Twitter lately with all the various quotes from the recent pastors' conference, Together for the Gospel (TG4).  Now, understanding that these were said at an evangelism conference, they still jumped off the page at me, to meet me in my personal journey:

"We have nothing in our arsenal but the word of God and prayer.  And it is enough." - Kevin DeYoung  (I couldn't have said it better.  I need reminding of that often.)

"To be bold is to be clear in the face of fear" Kevin DeYoung (Clear for me is trusting in God's plan and staying bold in my faith in spite of the fear.)

"Satisfaction in Christ severs the root of temptation." John Piper (What tempts me is worry and anxiety, but satisfaction in Christ destroys the temptation before it has a chance to establish roots in my thoughts.  It is so worth the battle, yet so hard to achieve.)

And I have already posted this one by David Platt, but I have gone back to to time and time again:
"Let us be done with our dependence on our human ability and plead with God to do what only he can do."  (Acknowledging God's awesome power and my, lack thereof...and pleading for his healing mercies.)


As I close I just have to add that after the last two weeks, I am so thankful for my times of peace, because this is a peace that passes all understanding, especially my own.  

God is good.  All the time.  And today, His grace was more than enough.