I've been waiting

 

It's been several months since Emma's diagnosis of Stage 3 

Anaplastic Large Cell Lymphoma.  I still can hardly believe it and sometimes it feels like a story I am hearing secondhand and not a story I am living in my own home on a daily basis.  I see her photo in the church newsletter in the section of people that need prayer, and we continue to receive mail addressed to her and cards of love and support, but it continues to catch me off guard that it's my daughter, my own flesh and blood, my sweet 10 year old girl, our Emma Kait.  How did we get here?
 

 We spent 5 days in the hospital last week instead of on the family camping trip that we had planned with a group of great friends.  I had trouble packing for the trip and somehow I think I knew it would not workout like we thought....it's kind of been the theme of our year so far......plan B, or C, or....H???

 

Emma developed a fever and was neutropenic and so was checked into the hospital straight from her clinic appointment to check counts on Tuesday.  Jon took the boys to the camping trip and they had a fun, albeit "not quite the same" family trip without us girls along.  I feel like I should have been more disappointed in the fact that we were missing the trip, but the undercurrent of all the twists and turns of our journey is that we are just riding along, we are not in the driver's seat.  It's unsettling sometimes because I don't know which direction we are turning next, but it's also a little bit peaceful, in the same way a child feels in the back seat of the car when a parent is in charge of the journey....they can relax, look out the window, daydream and even fall asleep because their loving parent has the map, the route information, has checked the tire pressure, filled the gas tank and even packed snacks.  They know and trust intrinsically that their parent will see that they arrive at their destination safe and secure.  I am that child.  A child of God.  He is in charge and loves me and is the "driver" of this journey.  We will be delivered.  Praise Jesus.

I heard a song not long after Emma's diagnosis that spoke to my heart like no other.  "Blessings" by Laura Story.   I've been waiting for it to be released onto Playlist.com, so we could have it on her blog.  I feel like it's the theme of her journey.  Please allow me to print the lyrics and forgive me for having it play as the background music to her blog. (Scroll to the end of her blog page and press play if it doesn't load automatically).
It speaks to me.....it helps me to have perspective.....it quiets my soul.  I've been waiting for it.

Blessings

Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

-Rebecca

Finding Joy in the Journey....or at least trying to.

We are unfortunately in the hospital (Emma and I) while our boys are on the camping trip we were all supposed to be on this week.  Emma developed a fever overnight after her appointment yesterday at the clinic when her ANC was at 700.  With a fever of 102 this morning, they wanted us to come back in for blood cultures and to check her ANC again, which was down to 500 and her fevers continued, so we were sent straight up to the hospital to check in for at least three days.  She is so disappointed but is holding up better than I would be.  Her fever reached a new high of 103.8 this evening, but is being managed now with Tylenol.  Praying for her fevers to go away, her ANC to go up and for us to be released quickly.  We continue to be thankful that we have been home and healthy for the majority of her treatment so far.  We saw one of our previous roommates today who has been here for 14 weeks now.  Certainly puts our three day stints into perspective. 

-Rebecca

We are here, we are here, we are here!

I've been absent for a few weeks from blogging...I apologize.  We have been completely wrapped up in the "lasts" of the season.  Last full day of school (aka last day of packing lunches for mom!) last day of school, last books to turn in, last backpack full of papers....all times three kids.  It's been a blessing that Emma has been able to experience and participate in all of it due to feeling great and high blood counts. We are praising God that He allowed such a "normal" end of the school year for her.  Today we went to an all school swim day and BBQ at the local park.  She did not skip a beat when she pulled off her sun hat, handed me her glasses and jumped into the pool with her fuzzy white head.  I loved seeing that nobody from our little school community even blinked an eye at her either.  Ahhh, the comfort of a safe and secure environment for our brave Emma girl.

We are celebrating summer being here with a family dinner, fire pit s'mores in the backyard and cousins from Los Angeles sleep over in the tent.  We are here!  It's a relief to have a break from the regular schedule and committments. We are intentionally going to be casual about planning things this summer and might be a little less "plugged in" to the internet.  Please know that if there is anything drastic or concerning with Emma and her health, I will certainly put the word out and ask for prayer......but if you don't see anything new for a few days or weeks, please celebrate with us in the fact that we are taking a much needed break, hanging out as a family, relaxing, appreciating the good days and being thankful that God is directing each step in this journey.

Emma still continues to have chemo every 21 days and we will be at the clinic each week to check her blood counts and be monitored.  We crossed a huge milestone at last week's chemo treatment in that it was her last scheduled spinal tap until the end of her entire protocol, which will be next spring. 

As I slathered sunscreen on her back this morning and noticed the two neat circular scars on her back from her bone marrow biopsy, I thanked God that He has been here with us since the beginning of this ordeal.  He knows the future, He knows our family and He knows and loves this girl.  I can try from the outside to protect her skin from the sun's harmful rays, but it's just a token of protection in comparison from the protection He is lending her every single day from the inside of her body all the way out.  I am so grateful her life is so secure in His loving hands.  Praise to Him alone.

Enjoy your summer days.  We are treasuring each one even more this year.  Thank you for your continued love and support. 

-Rebecca