School Work and Romeo...

Our weeks are settling into a pattern, and you know how I love my routines.  Mondays we go out to ROCK to feed.  The past two Mondays Amanda has been able to ride for volunteer classes and she has loved that.  Wednesdays she has a lesson at ROCK, Thursdays she has a lesson at ROCK followed by piano.  Add her weekly trips to Dell for her appointments along with school work, and it feels like we stay very busy.  On our ROCK days, when we are able, we like to go and do her school work there.  It seems to make a big difference for her to have a separate location to do work.  That, or she just loves being out at ROCK.....

We have hit week three in her cycle and that traditionally is when her platelets start to drop and her energy level is impacted.  I don't know about you, but when I am tired, my brain just does not function well.  Since lately I seem to be tired all the time, you can imagine what my poor family puts up with!  So with Amanda's normal symptoms of low platelets starting to show, I will watch her carefully for signs of fatigue.  No matter how tired she is, she still manages to gather her energy to make it to ROCK, and for that, I am amazed at her determination.

Today we went to ROCK and tackled school work first, then she had her lesson.  Tomorrow we head back to ROCK for her lesson with Freedom, then off to piano and our final stop for the day will be our Fall Festival at Crestview.  Friday we go to Dell for her weekly labs and she will receive her antibiotic infusion.  I am anticipating that her platelets will be low, but we are still looking to start chemo next week.  Four weeks goes by so quickly.

This Monday at Grace Academy, they had a special "Team Watson" all-school Chapel to praise God for what he has already done in Amanda's life and also to pray for her and our family as she continues her treatment plan.  Team Watson bracelets were handed out to all the students and staff.  What a blessing to be a part of that phenomenal family.  I was in the school office one afternoon this week helping out, and while I was there, two new teachers came up to specifically tell me that they daily pray for Amanda. 

I came across this amazing blog on Desiring God, and while I won't post the entire blog, I encourage you to take a few minutes to read it yourself at Don't Give Up.  At times I feel so weary in spirit, mind and body.  These words ministered to me at the exact time I needed it.  I know that I can't be the only one out there that feels weary and exhausted from life.  Be encouraged. 

From Don't Give Up:
"And wars are exhausting — especially long ones. That’s why you are often tired. Most soldiers who experience the fierceness of combat want to get out of it.  That’s why you feel urges to escape or surrender. That’s why there are times you’re tempted to give up.
But don’t give up. No, rather “take courage! Do not let your hands be weak, for your work shall be rewarded” (2 Chronicles 15:7).

Don’t give up when you feel that deep soul weariness from long battles with persistent weaknesses.

“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me (2 Corinthians 12:8–9).

Don’t give up when your long prayed-for prayers have not yet been answered.

And he told them [the parable of the persistent widow] to the effect that they ought always to pray and not lose heart (Luke 18:1).

Don’t give up when the devil’s fiery darts of doubt land and make you reel.

Therefore take up the whole armor of God, that you may be able to withstand in the evil day…in all circumstances take up the shield of faith, with which you can extinguish all the flaming darts of the evil one (Ephesians 6:13,16).

Do not give up when the fragmenting effect of multiple pressures seems relentless.

But as servants of God we commend ourselves in every way: by great endurance, in afflictions, hardships, calamities, beatings, imprisonments, riots, labors, sleepless nights, hunger . . . (2 Corinthians 6:4–5)."

Do not give up when waiting on God seems endless.

Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. (Isaiah 40:30–31)

While I do often face weariness, looking back over the last seven months of Amanda's story takes my breath away at God's goodness.  We are blessed.

School at ROCK in the Family Room on Monday

Rafy was used in the volunteer training class. He pulled Cinderella's carriage!

 

Amanda rode Romeo for class, and she liked him so much, she rode him again for today's lesson.

Shurely Grammar in the Therapy Room at ROCK

Amanda got to tack Romeo by herself, with helping hands close by the entire time.  As you can see, some of the instructors have dressed up this week.  :)

   

Has Amanda found her true Romeo for Wednesday's lessons?

Look Ma!  No lead rope!!

 

Blowing bubbles is always fun, especially backwards on a horse!

 

A glimpse at our weekend, and Amanda's hunt....

What a weekend!  The boys had a great night (and a late night!) bow fishing on Friday night.  Then, Tom got up early Saturday morning and took Amanda hunting. She did it! She woke up EARLY and off they went to Grampy's to hunt.  Not much was moving, and just as they were getting ready to leave, a doe walked out and Amanda   was able to get a good shot.  Her first deer of the season, and by the sounds of it, it won't be the last.  This weekend especially, I miss Grampy.  He would have been so proud for her and she would have loved for him to share in the excitement. 

Brandon and one of his shots.

Papa Watson had a great night!

Amanda and her first deer of the season. 

From there, we went to my parents house for the day for celebrating birthdays and it was a wonderful day of family, fellowship, football and food. (And naps!)  Amanda played hard all day riding her bike and spending time outside with her cousin, Kyle.  Today, she has felt it!  I guess that is the downside of letting her go all-out, all day, but it sure is worth it getting to see her have so much fun and just do 'normal' things.  Tom was working today, but our day consisted of much rest and relaxation.  She didn't move from the bed or couch very often, and when she did, she felt pretty bad. 

Friday, Brandon and I got our flu shots, and poor Brandon had quiet the reaction to the shot, so he also spent all day resting and feeling miserable.   What a rough day today was for both the kids.

I, on the other hand, had a very productive day.  A sweet friend came over to help me hang pictures in my den.  It has been on my to do list for years, literally, and today, we got it done.  I feel like I accomplished a great task today.

So as I go to bed tonight, I am praying that both of my children will wake up refreshed, feeling better and ready to face a new day.  As I lay here, the comfort of Psalm 23 rolls through my head as a reminder of His peace, comfort, joy.

Psalm 23
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
 He restores my soul.
He leads me in paths of righteousness
    for his name's sake.

Even though I walk 

through the valley of the shadow of death,
    I will fear no evil,
for you are with me;
    your rod and your staff,
    they comfort me.

You prepare a table before me  

 in the presence of my enemies;  

 you anoint my head with oil my cup overflows.

 Surely goodness and mercy shall follow me 

  all the days of my life  

 and I shall dwell in the house of the Lord forever.

Wednesday's and Thursday's ride

We would like to introduce you to the horse Amanda rode, and loved, on Wednesday.  His name is Dude and he is a Paint.  We surprised Amanda again because Sandra Jo was one of her side walkers for Wednesday's ride.  All in all, it was a beautiful day for a ride.

Meeting Dude

I'd say she was a little on the tired side that day.....

Oh, how I do love seeing that smile!

One of the exercises - striking crazy poses.

Dude was a hit!

Yesterday was her first day for her second ride and what a day she had.  Amanda and I started the day by heading to ROCK early to do our school work.   That was a fun change of pace for both of us.  Then it was time to ride.  Thursday's rides will be more focused on her learning how to ride a horse versus the physical therapy that she receives on Wednesdays.  Freedom was in a playful mood, and she had a great day tacking, riding, removing the tack, then turning him back out to pasture when they were through.

After ROCK, we headed to pick up Brandon and get ready for the big play off game.  The tournament was a single elimination, and unfortunately, the boys lost in a heartbreaking game against a team they have beat twice this season.  They played, and played hard, but in the end lost 6-0.  So our football season is officially over.  We will have a short time off before we head into our next sport, basketball!

As our week ends, the kids have a big weekend planned.  Tonight, Tom, Brandon and Papa Watson are going bow fishing on Stillhouse Lake. This was a gift to Brandon and the boys have been looking forward to this trip for awhile. Then, tomorrow morning, we are hoping that Amanda will feel up to going deer hunting for youth weekend.   Mornings are always very hard for her, so this will be a huge accomplishment on her part to get up and go.  Today we took Amanda to sight in her rifle.  She has her eye on a monster buck this year. 

Saturday is also our day at my folks to celebrate family birthdays this month, one of which happens to be Tom's!.   His birthday was yesterday, and when it is all said and done, we will celebrate his birthday three times. :)  For a man who is a 'behind the scenes' kind of guy - this is a little over the top and I love it. 

Looking to next week, we are entering the third week where her counts traditionally drop.  She has had such a great cycle this time (not counting her week of chemo) that I am hopeful we won't see any major changes like we have in the past, but that she will continue to feel good as we head into the last two weeks of this cycle.  

Psalm 33:21-22

In him our hearts rejoice,
    for we trust in his holy name.

May your unfailing love be with us, Lord,
    even as we put our hope in you.

Update on her appointment today...

What a full, blessed day.  Today's appointment went smoothly.  Amanda's labs came back great.  With the much anticipated wager on the line (See yesterday's post for the explanation), she weighed in and Amanda gained two pounds!   This was the second consecutive appointment that Amanda has gained two pounds, so even though Amanda did not gain the three pounds for the karaoke, Heather still felt like she deserved a song.  Amanda's nurse, Christina, and Heather, her Nutritionist, sang for her.  It was so much fun and Amanda got the biggest kick out of it.  Our team at Dell is amazing.

You never know what goodies will be at the doctors office.  Today Amanda was able to pick out a costume to wear to the Fall Festival and also pick out a fun winter hat.  There were several hats and she couldn't decide which one she wanted.  After much debate, she went with total fun and craziness.  I'm sure we will see her in the hat often.

We didn't get her antibiotic today as I anticipated, so we were not there as long as I thought we would be.  She did get her Avastin infusion, fluids and her shot to boost her white blood cell count.  Next week she will go in and get her antibiotic.

We made it in plenty of time to see Brandon's game and what a nail-biter it was!  The Grace Lions pulled off an exciting win and once again it was a blast to watch the boys play so hard for the win.  Go Lions!

We are entering Amanda's favorite part of the week - ROCK!   Tomorrow's horse is a surprise for us, since she has picked another new horse to ride tomorrow and we are not sure if he will be available.  Amanda has chosen to ride Freedom the Mustang on Thursdays. 

Amanda has been doing so well, I am praying that she continues on this path through the rest of this week all the while I am praising God for where we are right now.

Due to the medications she received today, she went to bed feeling pretty bad.  So as she fell asleep, I was laying down next to her, holding her hand.  Sweet moments like that are forever remembered.  As I lay there, it brought to mind a song Amanda was singing the other day by Matt Redmon. 

You Never Let Go
 Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

What we've been up to....

 I can't believe I haven't posted since last Wednesday!  It is hard to remember what all has gone on, and I guess that is a good thing in a way.  It means we haven't run into any major health issues and have just been busy enjoying our days. Amanda has continued to feel a little better every day and I am thrilled with how well she is recouping after chemo.  In fact, this past weekend, we played a little family game of flag football in the backyard with her right in the middle of it all. 

The next few days will be busy. Today we went to ROCK to feed, and we got to feed the outside horses as well as the horses that are brought in to the stalls each day.  I was surprised at how much extra work it added, there are a total of 24 horses, but you would never hear any complaints from Amanda!  Before we started feeding, Ms. Judy had a surprise for Amanda and asked if she would like to be the rider for one of their volunteer training classes that was scheduled for later in the afternoon.  Silly question, of course she would!  Amanda was already on cloud nine, but to top it off, our niece Sandra Jo (who came to feed with us today) was one of the students in the class so that made it a special experience. 

Tomorrow, we have our appointment at Dr. Harrod's and it will be a long day.  Amanda will receive her Avastin infusion, her antibiotic, the shot to help boost her white blood cells and most likely fluids.  We will be in the infusion room for hours....

At our last appointment, Amanda's nutritionist, Heather, made a little wager with her in regard to putting some weight on.  As I have mentioned, weight has been a struggle for us so Heather decided to get a little inventive with ways to set goals that Amanda would want to reach.  Here it is: if Amanda has gained three pounds in this past week and a half, one of our doctors will sing karaoke in the teen infusion room.  Oh yes, you read right - karaoke!  I have to say, I hope the doctors come ready to sing, because Amanda is very close to that goal!  Our day doesn't end after our appointment. We have to be back in Georgetown in time to make Brandon's football game after school. The season is winding down and I don't want to miss a single game!  The day feels rushed and it hasn't even started yet. 

Wednesday, Amanda has her lesson at ROCK and at her lesson last week, we shared some pretty exciting news with her.  An anonymous donor has provided the opportunity for Amanda to ride a second time each week!  She will ride on Wednesdays AND Thursdays each week that she feels physically up to it.   With our feeding day on Monday and lessons on Wednesday and Thursday, Amanda is one happy, horse-loving girl. 

Please pray for Amanda tomorrow.  She didn't go in last week but was given a break, and that has caused a little anxiety for tomorrow's port access.  Isn't it funny how sometimes, when you break a routine, it can actually be more harmful than helpful? 

 God continues to bless our family so much.  I am thankful for each and every day.   I came across the scripture below this morning and was reminded of God's great plan for each of our lives.  It is one of my favorite Psalms.

Psalm 139:13 - 18
For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth. 
 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

This helps me keep in perspective how little control I actually have over this life I live and who is truly in control of ALL things.  And for that reminder, I am extremely grateful.

Friday morning, we went to Grace to watch the craziness of Crazy Hat Day.  Even our mascot was participating.  :)

The Team Watson Flag Football game.  Let the competition begin....

What can I say? We are a little competitive....

Amanda and Sandra Jo took care of the feeding, and I was off mucking stalls..

Amanda put her right to work!

Meet Sherry, the Draft horse.  One. Big. Horse.

Then you have these guys - Shimmer and Peggy Sue.

This is Shimmer.  He is a big personality in a little body...

Feeding is hard work - Amanda found the perfect way to rest by catching a ride!

Here is Amanda, riding Jody, with Sandra Jo as her side-walker.

Then she also got to ride Miss Piggy.  Love getting to surprise her with what she loves!

Our day, Wednesday

It was quiet apparent first thing this morning that Amanda woke up feeling much better today than she felt yesterday.  She is still a physically weak, but her spirits are high and her attitude is good.  Perhaps for her it had to do with it being Wednesday and Daddy was home today!  She has been looking forward to Thomas going to ROCK for her lesson for weeks now, and despite the coolness and the rain, she is super excited.

This morning was very productive school-wise.  We knocked out a math lesson and a Shurley lesson, much to my delight and surprise.  I am still taking it day by day and still feel like I am stumbling my way through the dark, but have a better perspective on the entire situation.

Finally, it was time for us to head to ROCK.  As I mentioned, she has been waiting for weeks to ride the Wild Mustang, Freedom, so that Thomas could be there.  Well, Freedom is not wild anymore, but once upon a time.....

While doing this, they were stopping the horse at random times, and then starting back up again.  Great core work!

She can do it with her eyes closed.

This was a new one, and difficult to boot!

Tossing it back and forth while riding backwards on the horse...just another day at ROCK.  ;)

Here she goes again, up on her knees to ride.

They rode this way half-way across the arena.  Amanda's legs were exhausted!

Amanda is talking to her side-walker, the amazing Kristin.  Kristin is a therapeutic riding instructor at ROCK and a pediatric nurse.  She is a great member to have on our team!

They were trotting!

Bad lighting, but great picture of her smiling as she trots by...

She looks like it was a successful day!

I think today was all that she hoped it would be. I was a little worried she might be disappointed after looking forward to it for so many weeks, but she left the lesson on cloud nine and really enjoyed riding Freedom.  Perhaps she has found the horse for her?

Now that we are through with the chemo portion of cycle four, I can take a deep breath.  Considering I am not the one currently under treatment, this next statement may come out sounding a little strange, perhaps even selfish, but every round of chemo gets a little harder for me both emotionally and physically.  During her week of chemo, I don't sleep as well and my emotions go into overdrive mommy-mode.  I don't feel like I am worrying more or am more anxious, it is just a difficult process.  

Nights are usually the hardest.  The other night, the boys were gone, Amanda had finally fallen asleep and I lay there in the dark next to her with my mind replaying moments from these past seven months.  There are some wonderful, amazing memories and there are some rock bottom, heartbreaking moments.  The memories were just rolling over me in the dark.  No one ever expects to be told one day your child has a brain tumor - there is simply no way to prepare yourself for that kind of news.  So as I lay there, I started thinking back to the days "before." As you know, I love pictures, so some that came to mind were snapshots I have taken - like the one of newborn Amanda in her carrier sitting behind me on the floor while I played the piano at Lawler or Brandon and his first day at home from the hospital.  Recalling favorite memories from fishing and hunting to memories of being a stay at home mom - on and on it went, but they all led to where we are today.  You hear people say how your life story prepares you for a task.  I saw that clearly in my job at Grace, how God used different seasons throughout my life to help prepare me for that job.  But this, well, how do you possibly prepare yourself for something like this?

So here I sit, as a mom, seven months after Amanda's diagnosis, I find myself still processing where we are.  Sometimes, it feels like I start over every day with that process.  Other times, I sail smoothly along, confident in the path that lies before us even without knowing what lies ahead.   But throughout all of this, there is one thing that never changes.  In fact, there is one thing that has prepared me for something like this, the only thing that could prepare me for something like this - and that is my relationship with Christ.  James 4:6 says, "He gives greater grace."  Amen.  Every day, without His grace, I would simply fail.   It is through Him that I find the strength, the joy and the hope to start each day fresh.

James 4:13-16
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”