MRI Friday

Last night, as we were preparing for bed, the later it got, the more anxious and scared Amanda got.  She has been through this process so many times, I thought that she was comfortable with it all.  Sometimes, it is easy for me to look at the things she goes through as "just another step" or "something she has to do" and forget that she is actually having to go through something. I get anxious just getting a flu shot or dental work done, so I can easily imagine how some of these things could create an anxious spirit and fear.   Despite how my heart broke from it all, it was also a time that I will forever remember as one of our sweetest family moments.  As a family, experiencing the comfort of prayer, reading God's Word and just loving each other as Tom, Brandon and I reminded Amanda she is not alone in this fight is something I will never forget.

This morning started very early.  Brandon went to school today, so we dropped him off at a friend's on the way to Austin.  Thankfully, they fed him breakfast so that was one less thing that had to happen before we left the house!  Once again, I am grateful that God led us to Grace Academy for such a time as this.  I knew my boy was in wonderful, loving hands today while we went to Dell with Amanda.

In order to beat Austin traffic, we left Georgetown before 6:30 a.m., but that put us there almost an hour early.  Given that Amanda was still nervous, that was not a good thing.  We finally checked in and they had us back in a pre-op room in no time.  From that point, it was a waiting game.  Amanda did very well considering we went from expecting her to go back 25 minutes early to actually going back 15 minutes later than our original appointment.  Then, once she was back, we waited some more. 

It was another great experience with the doctors and nurses at Dell.  Today it took a full two hours for the MRI before she was moved to recovery.  After her MRI, they let us back as soon as she starts to wake up and today, our favorite charge nurse was there again.   She was our nurse the very first night we were at Dell when this all began and has been there every time we have been back.  Because of that, she is very familiar with how Amanda comes out of anesthesia and it is not usually a happy process.  Today, they gave her a different medication for sedation and I was amazed at the difference she had coming out of anesthesia!  Amanda woke up much calmer and did great in recovery.  And now we wait some more for the results of her MRI.

I'm sure I have mentioned this before, but Thomas is the calm, practical balance to my emotional, often high-strung self.  That is a good thing on many occasions, however, sometimes, I want him to get a little anxious with me! Seriously!! He is always good to remind that we can not change the outcome, God already knows what lies ahead, so we are to be faithful and trust in Him.  Dang it.  I hate it when he is right.  I will be honest and tell you, it doesn't always work and I still often get anxious, but I know, deep down, that God is in control of all things. 

I like how I have been able to look at Tom and my relationship and see how our differences and our similarities have been an amazing asset to us as a couple over the past six months. God has a purpose for our family, and we see His fingerprints daily as we live out this life we have been called to live. 

So as we enter this weekend of waiting, and as we enter next week waiting, I will do my best not to be anxious, but instead, to be hopeful. 

 Zephaniah 3:17
The Lord your God is in your midst,
    a mighty one who will save;
he will rejoice over you with gladness;
    he will quiet you by his love;
he will exult over you with loud singing.

A good report, and a great ride

2 POUNDS!  Amanda has gained two pounds since our last doctor's appointment, a little over a week ago.  Talk about being one happy mama!!  That is crazy good - considering the most we have ever put on since we have started chemo in a single week has been a pound.  Plus, we have really concentrated on her gaining some weight this week, so it was a good feeling to see her hard work pay off.

Her labs came back looking great and her infusion went smoothly.  She did receive the new medication I mentioned to help boost her white blood cell count today.  Going to the appointment, we didn't mention to her that she would be getting a shot just in case it didn't happen, then she would have stressed over nothing.  As soon as she found out, the anxiety began.  A little numbing cream, some great nurses to help distract, Daddy's lap to sit in and a little guy called Buzzy the Bee was enough to get her through without too much drama.  (Buzzy was a little plastic bee that buzzed and you put it on the arm close to where the shot is given.  They said it tricks your brain, I just think it takes your attention off of the shot. Whatever the case, it worked.)  It was over and done with before she realized. 

Next Wednesday she will receive her monthly antibiotic infusion and at that appointment we will get the results from her MRI she has this Friday.  So among the other many lessons we are learning on this journey it seems patience and the ability to peacefully wait seems to keep coming up.  I guess those are areas I need a lot of work!

From there it was off to ROCK.  Today she did a little more trick riding.  She said she worked so hard in class that her legs were shaking and weak afterwards.

Pre-riding stretches

Around the world

Amanda's long legs and Miss Piggy's short legs make this stretch a bit more challenging for her.

Even though the lighting is terrible in this picture, I still love it for what it represents.  This was her trick of the day.  She is on her knees, arms lifted high and her face lit up with a smile of achievement when she hit the pose.  So proud of her!

Once she accomplished that, they did it again, but this time....

.....Miss Piggy walked with her in that pose!

Another great day at ROCK

With her favorite day behind her, we move on with the rest of our week.  Tomorrow, Brandon has a football game and Friday is her MRI.  We are at day 14 of her cycle.  She should have another week or two before her counts start to drop and I plan to take advantage of her feeling well as much as possible.  Bike rides, dog walks and trips to the playground are short but very sweet.

As the time approaches for her MRI, I find myself waging a mental battle.  While I may grow weary, weak and sad, I still have hope, faith and trust.  It is at times like this that the outpouring of love help in more ways than I can express.  Thank you for your continued support and prayers for our family.   We have an acquaintance through Tom's family who is also in the fight against brain cancer.  Reading their blog is one of the hardest, yet most touching things, for they also live to give glory to God in all circumstances.  Recently, his wife posted this on their blog:

"There are times I feel too weak in emotion to pray....it is in those weak times I know you all are carrying us in prayer so much so amidst the tears I continue to just say peacefully over and over....."Lord, hear their prayers."

Amen.  This woman has my admiration and my prayers.  Our faith is what holds us together, lifts us up in moments of weakness, and surrounds us with the love of Christ through fellow believers.  Please know that our family feels your love and prayers and we are thankful.

John 13:35

By this all people will know that you are my disciples, if you have love for one another.

A great day today

Our entire family made it to worship yesterday morning!  That is the first time in a very long time.  It was wonderful. 

Amanda seems to have turned a corner during this cycle with how she is feeling.  She is feeling much better, with just  occasional stomach discomfort.  Last night, she rode her bike and played on a playground!  It was for a short time, but I was thrilled that she felt up to getting out and going to play. 

Today was a good day.  I'd even say it was a great day.  Amanda and I slept in a little later than we should have for a school day, but hey, that's one of the perks of home schooling!   We had a great day in school today.  We started Shurley Grammar!  I have been putting that one off because it intimidates me so much, but I received some great encouragement from a friend yesterday at church that really gave me the push I needed.  Amanda and I had a pretty good time together getting our first lesson done.  I was definitely relieved to get that first lesson behind me.  Tomorrow she has her Latin review and that will help us know how best to get back on track with Latin.  I am just feeling really very pleased about how school is going at this point. 

As an end of the day treat, we headed over to ROCK to do some volunteering.  We mucked a few stalls, helped feed the horses and Amanda loved every minute of it.  I also had a great time.  Getting the opportunity to take part in the care of the horses is a privilege for me considering all the joy and benefit it brings to Amanda.  The fact that she also enjoys the feeding makes it that much more special to me.  It was a great bonding time AND some amazing physical therapy that she didn't even realize she was getting!  After such a good day, I am feeling incredibly blessed right now. 

Of course, I took some pictures while we worked.  I need to remember to take my good camera with me instead of always using my phone.  It doesn't take the best pictures, but it is still fun to document such a fun part of our day!

Before we started the real work, Miss Piggy got a little one-on-one grooming.

And for the record, I did help muck out the stalls! I just had to take a picture first.  :)

Here she goes, ready to feed. She pulled the wagon, scooped and fed, wanting to do as much by herself as possible!

Even at the end, she was still having a blast.

Amanda has big week ahead.  Wednesday she has her appointment with Dr. Harrod.  She will receive her second infusion of Avastin for this cycle.  Then it will be off to ROCK for her lesson for this week.  She has been eagerly looking forward to it since last Wednesday.  On Friday, her MRI is scheduled for 9:45 a.m.  I am looking forward to the day with hopeful anticipation!  While we will not find out the results until possibly as late as Wednesday of next week, I am still excited to see what progress has been made on the tumor over the last two rounds of chemo.  Please pray that we will see a wonderfully significant reduction in the size of the tumor! 

All morning I have been humming an upbeat song that we sang Sunday morning.  I think it is a good way to close today's blog....

Everyday with You, Lord is sweeter than the day before
Every morning I will worship, every evening I’ll adore
'Cause everyday with You is sweeter, sweeter than the day before

What a privilege to know You, like I know You…
To be loved like You loved me
What honor to worship, truly worship
From this heart that You have freed
From the rising of the sun to the setting of the same

Everyday with You, Lord is sweeter than the day before
Everyday with You, Lord is Sweeter than the day before
Every morning I will worship, Every evening I’ll adore
‘Cause everyday with You is sweeter, sweeter than the day before

What a wonder to live life, really live life.
Overcoming anything
What a reason to lift up, freely lift up…
Everyday my everything

From the rising of the sun to the setting of the same

Everyday with You, Lord is sweeter than the day before
Everyday with You, Lord is Sweeter than the day before
Every morning I will worship, Every evening I’ll adore

‘Cause everyday with You is sweeter, sweeter than the day before

The Hideout Theater - Murphy Style

And now, the big reveal!  I have to admit - last night was one of the most entertaining nights we have had in a long time.  A little background first.  With chemo scheduled at the same time as Amanda's birthday, it was a little hard to have a large class party like she originally wanted.  We had a very small swimming get together before school started, but it was thrown together at the last minute due to the timing of her treatment, our schedule and school right around the corner. Honestly, I was a little sad since it was her 10th birthday and I felt like I wanted to celebrate this year in a big way, but at the same time, I was just thankful that we had been able to give her some time with a few friends and celebrate.

Unbeknownst to me, our close friends had been thinking along the same line and approached us with a phenomenal party idea.  John, Lacy and Ashton Murphy had gone to the Hideout Theater in Austin this summer to watch improv, and John thought that it would be fun to have the troupe come to their home for a birthday party for Amanda and her classmates.  The troupe does children's theater classes and would involve the kids throughout their show.  My first thought was that it sounded fabulous!  I was a little concerned since Amanda has become a little more shy since her diagnosis, but she loved the idea as well.

So last night, the Murphy's opened their home to 23 kids, plus parents and hosted an unforgettable evening. The troupe was funny, engaged the children, and made us all laugh.  On the Evite that was sent, I said "They say laughter is the best medicine, and so is spending time with your friends!" How true that is.  It was great to see Amanda with her friends again.  It seems every time we try to plan a day to join her class, she hasn't been feeling well or something comes up, so I was very happy that last night worked out.  She rested up for most of the day, went to piano, then came back home to rest  again so she would feel good for the evening.  Thankfully, she seemed to hold up very well for the night evening and really enjoyed herself.  I am working on editing a short clip of the show to post, but my skills are lacking somewhat, so give me a few days and I will try to have something to share.  For now, enjoy some pictures from the evening!

Welcoming friends to the party.

Ok, so not my most flattering shot, but I was preparing for my possible "big moment" later in the evening.

The hostess with the mostess, Lacy Murphy.

Mr. Murphy saying grace, and we have so much to be thankful for!

The party crowd enjoying their pizza!

The Advice Game: Lacy was supposed to give good, sound advice.  Makenzie was supposed to give bad advice, and Amanda gave birthday girl advice. 

The next few pictures are from a game called "My Vacation Slideshow"

My favorite game of the night - Hitchhiker. 

Happy Birthday Amanda!

These guys were great!  On the way home, Amanda said she LOVED the evening.  What an unforgettable birthday party! Thank your Mr. and Mrs. Murphy!

Amanda gave it her all last night, and today we saw the effects of it.  She felt pretty miserable all day.  To me, it sounded like a visit to Miss Piggy was needed! Luckily for us, Miss Piggy was available for a visit.  Not only that, but on a dreary day like today, Amanda needed a little color to brighten her day, so her physical therapist, Judy and I surprised her by meeting her with a little extra "something" to try and cheer her up.  I'll let you be the judge on if it worked or not! :)

I don't think Miss Piggy was ready for our close up - she was missing some color!

Hard at work preparing Miss Piggy for her next lesson......

....while doing her best not to pay attention to silly Ms. Judy!!

This picture makes me laugh out loud - I can only imagine what was going through Amanda's head...

But she still was able to take care of business.

 I'd say today was a great success!

Miss Piggy and the folks at ROCK always give her a great boost, but unfortunately, as the evening wore on she continued to feel bad.  I think a good night's sleep will do wonders for her, along with a wonderfully lazy day at home tomorrow resting up.  Our weekend is very low key, and after this past week, that will be a very good thing. Plus, all this rain just sets the perfect stage for snuggles, movies and books.  Sounds great to me!

Thursday, part one

What a day today has been!  This first part is not about Amanda, but instead, about a special treat I experienced today that was greatly enjoyed.   A friend won a gift certificate for Mother's Day for a spa day at the Travaasa Spa in Austin along with a gift certificate for Eat Out In.  She called the spa, shared our story and said she would like to give the gift certificate to me if that would be possible.   Travaasa called back and said she could keep her gift certificate and they would give me one as well!  They also gave me a gift certificate for Eat Out In, which I plan to take advantage of very soon.  So, to make a long story short, today was my much anticipated spa day!

No, this is not the fun event I mentioned last night.  Although this was definitely fun for me, that one is all about Amanda.  Look for the details and pictures in a post tomorrow, "Thursday, part two," but for tonight, I wanted to share a little of my relaxing day at this beautiful resort. 

You know you are about to enjoy your experience when it is a gated property...

My view from a cabana prior to my Hill Country Honeybee Massage and Treatment

After my massage, the relaxation continued outside, starting with the hot tub

My cabana - And for the record, I was very discreet and nonchalant as I took these pictures. After all, I couldn't look too touristy.  :)

After that amazing day, I met Tom and Amanda at Mrs. Hausenfluke's for our first piano lessons since last March.  Talk about blessings.  Amanda sat down and played like she has only missed a few lessons instead of six months.  And she is playing with her left hand!  It will be a slow, gradual process getting that left hand back to where it needs to be, but oh my, to hear her play was a beautiful thing.  I am not sure if I have mentioned this before, but Mrs. Hausenfluke taught me piano lessons when I was Amanda's age, so her giving lessons to Amanda has always been a sweet thing for me. (Amanda was in her second year of lessons when she was diagnosed)  I am so honored to have Mrs. Hausenfluke walk alongside us on this journey as piano becomes part of Amanda's physical therapy.  I am looking forward to watching, no, hearing Amanda's progress!

Psalm 40:3-4

He put a new song in my mouth,

    a song of praise to our God.
Many will see and fear,
    and put their trust in the Lord.

  Blessed is the man who makes
    the Lord his trust

It's Wednesday - that means - ROCK!

After the rough week of chemo, Amanda seems to be rebounding nicely this week.  Each day she seems to have a little more energy to do things.  Yesterday she went to physical therapy and occupation therapy, and today was the day she has been waiting for since last Wednesday - her lesson at ROCK!  I am thrilled that she is so enthusiastic about it and she enjoys her riding partner tremendously, a 10 year old girl named Tess.  They seemed to be hitting it off quite well.  Add to that mix an amazing physical therapist and her team and we have a winning combination on our hands!  God is so good. 

Tomorrow she begins piano lessons again, and I can't wait to see how that will help rebuild the strength and endurance in her left hand and arm.  All this therapy and all of it fun!

We have another fun event planned for this week, but for now I will keep it a secret and wait to share more on that after the event and pf course with pictures. 

Please continue to pray for Amanda's strength and endurance to grow with each day.  She has been eating well and that is a huge praise.

Next Friday is her MRI, September 27.  With it being a Friday, we may not get the results until as late as Wednesday, but I am hoping we can work something out for a Tuesday appointment.   You know how I love to wait!  :)  I told Tom last night that I am praying that this next MRI would be even more spectacular than the last.  I want to be able to look our medical team in the eyes and proclaim and give glory to the healing hand of our God.  Having said that, I know, without at doubt, our God is a God of mercy and love and that He has already tremendously blessed our family.  Whatever His will is, we will give Him glory.

Matthew 6:33-34
 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

 A few fun pictures from our day today:

Getting the girls stretched out.  Even Miss Piggy was stretching!

Yes, this was a stretch....not a wall line-up. :)

She is becoming an acrobat on horseback!

Her fun riding partner, Tess, doing a little star action.

I will never tire of saying what an absolute game changer ROCK has been for Amanda and her spirit.  She lights up anytime you mention it, and as soon as her lesson is over, she starts looking forward to the next week.  I can't put into words how grateful I am, as a mother, to get to see this level of joy in my daughter's life.  I pray that God will bless this amazing facility, their workers and all that they do to help so many families.  They have certainly brought tremendous joy and blessings to my family.

A new week

As I look back over this past week, the one thing that jumps out at me is how poorly Amanda felt for not only this week of chemo, but also the weeks leading up to chemo.  That is very discouraging to me.  We have now completed three weeks of actual chemo, with 9 more to go and as I think of how she has been affected this week, it gives me great concern for the future.  I know, I know, since this has all started, I have spoken of how we live in the day, we don't think about tomorrow, and most of all, we count our blessings and cherish each and every day.  While that is more true today than every before, it is still a struggle for me to keep many of those concerns and fears from swirling around in my head.

So what is a mom to do? Well, if I am honest, there is only one thing I know to do when I feel this way.  I will fall back on the truths that have gotten us through this journey to this point.  I will rely on God's word and his promises.  And I will pray that God's will will be done and that He will be glorified through our lives.

Romans 8 has many passages in it that minister to me.  For example, verses 26-28:

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

Or verses 35-39:

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:

“For your sake we face death all day long;
    we are considered as sheep to be slaughtered.”

No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
  
Today we had her follow up appointment. This morning before her appointment, we went by to see Miss Piggy and tell her hello. She loves that horse!  We then made a stop at a neat little exotic pet store in Austin on the way to Dell.  The manager was so kind to her.  She held a few of the more, um, normal animals there.  We sent the pictures to Tom, (see below) who was working, and his first question was, "We don't own those, do we?"  Hilarious!   Amanda and I could have really had some fun on that one, but we behaved and quickly assured him we had not acquired any new pets.

In case you were wondering, since chemo made her feel so yucky last week, she was in a wheelchair today in order to help conserve energy because she is still feeling a little weak and just blah.  She does not need one on a regular basis. 

This one was so sweet and cuddly

This one was my favorite - they called him the guinea wig (instead of guinea pig!)

Once we got to the appointment, I was pleased with her labs - they came back great.  Her numbers are strong and that is a good thing considering we went into chemo with her white blood cell count on the low side.  That was very encouraging.  We will continue to focus on getting her to eat well and try put some more weight on her.  Please pray specifically for that area.

So as we move into this week focusing on taking care of Amanda and praying that her strength returns to her quickly, I will work (and maybe struggle) every day to to turn my fears to praising and live each day with joy.  

 Psalms 9:1-2

I will give thanks to you, Lord, with all my heart;
    I will tell of all your wonderful deeds.
I will be glad and rejoice in you;
    I will sing the praises of your name, O Most High