Recent days of swimming....and floating....

It seems that we don't get out of the house much lately except to float in a pool.  However, we have plenty of in-home entertainment!  We finally introduced Ginger and Mo.  I am surprised at how well they get along...Mo squeaks and squeals the whole time and Ginger is very gentle with her.

Now, to some swimming!

A beautiful day for a float...doesn't she look comfortable?

One day, we even took Ginger.   While she didn't technically get in the water, Amanda had a blast having her with us!

So, as I have mentioned before, we try to end our days with a float as often as possible.  It helps relax her while at the same time, allows the boys to get some energy out.  (And allows me to take pictures!)

He is ready to launch.....and off they go.

Now that is relaxation!

Love that grin.

*Sigh* One of the downfalls of having a waterproof camera - water spots!!

Take 2

Daddy and his girl

My favorite way to end the day - floating with this beautiful girl and that beautiful smile.....

A little about our days.....

I read this today in an article on Desiring God regarding personal journeling: Be honest and real, but ask God for the grace to get beyond your circumstances, however bleak, to finding hope in him.  Wow. That sentence was very powerful to me.  I think we would all agree that I have no trouble with being real and honest.  And because of God's grace, I manage to muddle my way through the muck and yuck of our days, and at the end of it all, find myself trusting God's plan for our family and holding on to hope.
 
Amanda is still not sleeping well.  Because of that, she does not feel up to doing much during the day and is very weak with no energy.   We still try to get out and go floating as often as possible.  There will be a blog with pictures soon!

Today, we met with one of our nurses with Hospice and I was very impressed with her compassion.  We will meet with another one on Friday.  These should be the two main nurses we will work with on a regular basis.  So far, our experience with Hospice has been mostly positive, but the very fact that I am talking about Hospice is still surreal.   Our main focus right now is to get Amanda sleeping and more comfortable at night.  After we accomplish that, we hope she will regain a little energy during the day so she can be more active. 

We continue to be thankful for all your prayers, support and words of encouragement.  Even though at times I feel like we are living in our own little bubble, you continue to remind me that we are not alone in this.  Thank you for that.

Every day is not easy, but we still manage to find joy and laughter, and most importantly, we still hold on to hope. 

Jeremiah 31:25

"I will refresh the weary and satisfy the faint," says the Lord.

Romans 15:13

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

Hospice and Amanda

We enrolled our daughter in Hospice today.  Those words should never, ever be in a sentence together.

Amanda, overall, is doing pretty well.   The changes in her are not easy to ignore or overlook for me though.  Slowly, very slowly, the tumor is impacting her body in new ways.   Just small changes at this point, neck and shoulder pain, tingles in her arms and legs, unable to walk without assistance, left sided weakness is increasing and sleep, well, sleep at this point, it is almost a joke.  She is not sleeping well, so we are not sleeping well.  We hope to tweak a few things over the next few days and fix that! 

I went through the Hospice meeting at our house today almost like it was an out of body experience.  In my mind I was thinking, "This is not happening.  We are not talking about Amanda."  Yet we were and the reality was more painful than I imagined it would be. Throughout the meeting I had a journal open in front of me that a friend recently gave me.   At the bottom of the page it said, "Be still Sandy, and know that I am God." Psalm 46:10  Anytime I felt like I was about to unravel, I would look down at that scripture and take a deep breath.  I never actually used that journal except to read that scripture!

Basically at this point with Hospice, we will have a nurse come at least once a week and assess how Amanda is doing, watch for any areas or indications of concern and see if there should be any adjustments or changes made to her medications.  

Hope is still here.  We are still loving and enjoying each day as much as possible.  We are currently on our way, you guessed it, to go swim.  And even though she rarely actually swims, she still loves to float. 

I am so thankful for the prayers that are continually being said on behalf of Amanda and our family.   The prayer sign up genius continues to amaze and encourage me. When my soul feels dry and hurting too much to pray, those names remind me of the many prayer warriors praying on our behalf. 

If you would like to participate in this ministry to our family, here is the link: Prayers for Amanda and enter the email watsonsignup@gmail.com.  Simply follow the instructions to complete the sign in and it will take you to the sign up page.  **Please note: We did not create this sight, so if you have any questions, please send an email to watsonsignup@gmail.com. 

Now, off to swim and make beautiful memories! 

Psalm 62:5

Find rest, O my soul, in God alone; my hope comes from him.

Prayer, and it's impact on me and our family....

So as we are moving a little further into this new phase in our journey, I can't say that it has gotten any easier.  Sleep deprivation may make me sound like I'm rambling, but I hope you understand what I'm trying to share....

I was visiting with a friend recently about the amazing prayer Sign Up Genius and the overwhelming response.  We were also talking about how through social media, so many people are sharing that they are praying for Amanda and are reaching out to friends in other parts of the world asking them to pray for Amanda as well.  There are people all over this mighty earth praying for our girl.  While I know that has been true from day one, since we learned of the change in her tumor and then this most recent prayer sign up, I've had a mental image of a tidal wave of prayer crashing over our family daily, even hourly.  That is a pretty amazing feeling.

I can feel the prayers.  Even in this nightmare of a situation, God's goodness and peace is real.  That doesn't mean I'm not scared or that my heart is not breaking, it just means that my hope in Christ is stronger than my fears.

Today, I am having a very hard day.  Amanda has not been sleeping well, and emotions and exhaustion never mix well for me.  And in God's perfect timing, with no prior planning, the Watson clan is stopping by for lunch and a visit.  What amazing timing - nothing like family to help improve your mood!

We started the new chemo last night and Amanda did great.  She will take a single pill daily for fourteen days, then have a week off, then back on a daily dose for two weeks then a week off and so on.  This chemo is a lighter dose and our hope is that it will simply "put the brakes" on the growth of the tumor and slow it down.

There have been so many amazing notes of encouragement and support and I have read every single one - usually more than once!  I forgot where I saw it posted, so I am paraphrasing here, but someone said to imagine the mighty army of prayer warriors surrounding us on this journey.  We are not alone.  The body of Christ continues to encourage and support us every step of the way. 

1 Corinthians 12:26
If one member suffers, all suffer together; if one member is honored, all rejoice together.  Now you 
are the body of Christ and individually members of it.

So, as we face this newest challenge, we will continue to go boldly before the throne of God and pray for healing in Amanda, but above all else, that God may be glorified through her life and our journey.

 _______________

"We pray as ordinary people who have an extraordinary God. We’re just normal, you and I...Prayer is effective, not because of great men who pray, but because of a great God who in Christ graciously hears his people. He’s the main ingredient. So pray. "  -Jonathan Parnell, Desiring God


Ephesians 3:14-21
For this reason I kneel before the Father, from whom every family in heaven and on earth derives its name.  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.
Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Some fun pictures from the past few days:
 

Amanda and Kyle with the rock that Amanda painted for him.  Had to get a picture of these two sweeties together!

Brandon had a wonderful birthday.  So many people helped celebrate the day with special touches throughout the day. 

Me and my girl doing a little floating.

Such a sweet picture!

A fun surprise visit last night from our Waco girl cousins and a quick evening swim!

Love these girls and how well they get along.

Nothing like some family girl time to lift the spirits!

No easy decision

I feel like an emotional shell of a person right now.  I just simply feel numb.  I'm here and standing, but don't feel like I am functioning very well.  It's been a rough week.

I am about to share some information that is so hard to type out it physically hurts to do so.  As I type it, however, I am reminded that the fight is not over.  We are still in this to beat cancer, it has just taken a turn down a road I never imagined being on so soon.

Yesterday's MRI showed that that tumor has slightly grown since her last MRI three weeks ago.  This explains why we have been seeing the symptoms she has been having. The weakness on her left side has gotten dramatically worse and we don't feel safe letting her walk without assistance.

After discussion on the various treatments with Tom, Dr. Harrod and our Palliative Care Team, we have decided to keep her on a light chemotherapy medication that is not expected to have many side effects and she should physically be able to handle it well.  We will also be speaking with hospice in the next couple of days.  As with most everything else, cases with children and hospice are very different than what we think of as hospice that adults use.  The hospice nurse will be a support system for us here at home, helping us make sure Amanda stays comfortable and that we have all the help around the house that we might need to make things easier for Amanda.

The steroids she has been on have not alleviated any of her current symptoms so we are tapering her off of those while adding this new chemo medication along with something to help ease any pain she may be experiencing.

So what does this all mean?  It means that the tumor has progressed quicker than anyone anticipated.  This lighter chemo dose will be taken daily and we hope that it will slow down the progression of the tumor.  It means, if you look at this with a worldview, our life can suddenly feel very hopeless and crushing.  But thankfully, that is not how we view this.  God is sovereign.  God is able.  God can heal Amanda.  God can do anything he wants that brings glory to His name. 

I still have hope.  I hope for much more time with Amanda.  I hope that the tumor stabilizes and she is able to do things she enjoys.  I hope that beyond anyone's understanding, that the tumor would just - disappear.  Most of all, and above all, I have assurance because I know that my daughter - in fact both of my children, have personal relationships with Jesus Christ so whether we are here for another 50 years, or 50 minutes, heaven is a real place and I have the assurance that my family will be there.   Throughout this journey we have seen glimpses of maturity in both of our children that simply stun us.

Our pain is real.  Our God is real.  Just as we have walked the last seventeen months glorifying God, we will strive every day that comes to do the same.

Prayer has been an amazingly important, vital part of our lives and you have joined with us praying for our daughter.   As we start this new painful part of our journey, a friend has set up a 'Prayers for Amanda' Sign Up Genius.  I am deeply touched and honored by this.  Should you choose to be a part of this, here is the link: Prayers for Amanda and enter the email watsonsignup@gmail.com.  Simply follow the instructions to complete the sign in and it will take you to the sign up page.  **Please note: We did not create this sight, so if you have any questions, please send an email to watsonsignup@gmail.com.   I feel that we often underestimate the power of prayer and I am moved by the fact that this is done on behalf of our daughter.  Thank you.

So as we start this new, challenging chapter, we are still living in the moment, the minute, even the second at times.  God is good - all the time.

My snuggle buddies

Matthew 19:14

but Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

Painting Romeo, and our MRI

Another exhausting day behind us.  We got a call early this morning that we were being worked in today for Amanda's MRI.  We had to be there at 3:30 with a 5:20 scheduled MRI.  The key phrase was "being worked in."  By the time we pulled in our driveway at 8:00 pm tonight, we were all feeling pretty frazzled.  Amanda had a hard time coming out of her anesthesia after the procedure.  In fact, tonight was rougher than it has been in a long time.  She went in exhausted and she came out exhausted. It took a toll on us all.

We tried to make it out to ride Romeo this afternoon before our appointment, but Amanda was not up to it.  She just wanted to be near him.  Sandra Jo had a great idea.  At ROCK, they do paint therapy and call it "painting a horse." My favorite was my dad called it "painting a paint."   So Kristin and Sandra Jo got out the paint we went to town!  Amanda was just gently painting, and then everyone else got, umm, a little more involved in the painting.  Check out the fun pictures below.

We go to Dr. Harrod's tomorrow at 11:00 for the results of tonight's scans.  It will be at that point we make our decision on what treatment route to take.  Your prayers are so appreciated!

Enjoy the pictures from our morning.  It was a great time.  A huge thank you to Sandra Jo and Kristin for making this happen!

These first few are from yesterday:

This amazing lady. Kristin, has been a prayer warrior, friend and Amanda's teacher at ROCK.  So blessed by her!

A quick trip over to say hi before our appointment yesterday.

A little "horsing around" before we said goodbye. 

 These are pictures from this morning's trip to see Romeo.  Originally it was for a ride with Ryan and Kristin as her side walkers and Sandra Jo as her horse handler, but it took a turn that we didn't expect.  It is a day we certainly will never forget!

Romoe had to get a few good poses in for the camera...

Ever feel like someone is watching you? ;)

 And here is when everyone else started joining in!

And then I just couldn't stand back anymore! I mean - who wouldn't want to paint a horse?!

Of course, the threats starting happening....come on people - we are painting the horse....not painting people!

I think Romeo likes it.

You knew this was bound to happen...

It felt so good to laugh and be silly...

Go PaPa!

Uncle Jason came up with a Team Watson brand!!  Pretty cool!

Romeo deserved a little peppermint treat after that painting session.

Look at his cheek.  Romeo has his very own "A" brand.  Perfect.

Simply an awesome day.  Even though Amanda enjoyed it, I think I had just as much fun. God has brought the most amazing people into our lives and we are thankful for them every day.

Psalm 118:24

This is the day that the Lord has made; let us rejoice and be glad in it.