Tuesday, December 25, 2012

[December 25, 2012]

Merry Christmas!
We hope your day has been filled with joy, peace, and love.
 
Many of you know that Kenton experienced what they're calling a relapse a couple of weeks ago with the discovery of some abnormal cells in his marrow from the aspirate on day +79.  We are no longer counting to the 100 days.
 
Over the past 2 weeks, it's been good news, bad news, okay news, great news, devastating news, all kinds of news wrapped up in every single day.
 
Thursday, Kenton had clinic.  The blasts had increased to 5% from 3% on Monday.
Friday, Kenton had some stomach issues, and they asked Luke to bring him back to clinic.
Friday they determined that Kenton was experiencing some GVHD (or graft vs. leukemia as they're calling it now).  The doctors were on the border as to whether they wanted to admit him or allow him to return to the halfway house to enjoy the holidays.
 
Ultimately, they decided to send him back to the halfway house with strict instructions to watch him carefully for dehydration because of the stomach issues along with other signs of GVHD (rash, fever).
 
McKayslin, Grammy, and I arrived at the halfway house before the boys returned from clinic.  They met us here about 30 minutes later.
We were so excited to see them - almost as excited as they were to see us!
 
That night, Kenton had some other stomach issues and his rash was getting worse.
IV fluids were ordered and given throughout the night.
 
Luke and I both were receiving the inspiration/direction that Kenton would not be at the halfway house on Christmas Day.
We asked the kids if they'd like us to call Santa and have him come early.
Originally we thought Sunday morning, but we still didn't feel right about that.
 
Our Christmas happened on Saturday morning, December 22.
We had a great day filled with blessings of love and generosity from so many friends.
We played and ate and enjoyed being together.
 
Saturday evening we also celebrated McKayslin's 9th birthday.
 
Saturday night, we'd just finished a game of Blokus when we noticed Kenton's rash had become much worse.  And then he started shivering.  We took his temp.  37.9.  38 is the threshold they give for admit.  Luke called up to PCMC to talk to Dr. Brenda.  By the time he was off the phone, Kenton's fever was 38.1.
 
We said prayers, gave hugs, and the boys headed up to PCMC.
So grateful for that inspiration to have Christmas early.
Extremely grateful for the fabulous day we had here at the halfway house together.
Very sad that our eleven whole days together started out as 28 hours together at the halfway house. . .to be continued split between PCMC and the halfway house.
Incredibly happy that Kenton's body was showing signs of GVHD.
So many mixed emotions!
 
The boys arrived, and Kenton received 2 units of platelets (his count was FOUR!).
He fevered off and on through the night and into the morning.
 
We spent Sunday at PCMC.
It was fun to have a visit from the General Primary President, her husband, and Pres. and Sister Cornelious.
 
No fevers after Sunday morning.
2 units of packed red blood given on Sunday.
Blast count was at 6%.
 
Monday morning came.
Blast count at 7%.
ANC down to 100.
But lots of signs of GVHD.
 
Monday was spent at PCMC also.
The kids were convinced that Santa was going to come last night also, so when I brought Grammy back to the halfway house, I picked up their stockings so they could hang them up in Kenton's room.
We had a really fun day playing games and giving tattoos to Jacqueline and Dave.  :)
 
This morning dawned bright and clear after a huge snowstorm yesterday.
Kenton and Luke sent pictures of Kenton's room.
Santa DID come again!
Plus, 2 tubs worth of gifts from donations.
S.P.O.I.L.E.D.
 
We girls hurried up to the hospital to open Christmas again.
So very blessed.
Santa brought each of us some of our favorite things.
One of the tubs of gifts was specifically for the parents - a good pillow and blanket, yummy lotion, great shampoo/conditioner, and treats.
The other tub was FILLED with gifts for the kids - games, craft kits, treats, movies. . .
 
We played and ate and watched movies and did crafts (including a catapult!).
It was a very fun day.
 
Our best gift?
Kenton's blast count was down to 3%.
ANC up to 200.
White count up to 900 from 800 yesterday.
 
Dr. Boyer put Kenton on a lactose free/low-fat diet to make sure that the stomach issues are from GVHD and not a virus even though the blood cultures have come back negative.
 
Tomorrow the plan is to use the new Crayola Airbrush System to design t-shirts, make some gingerbread houses, play some games, and do some more crafts.
 
Yes, Kenton is still inpatient.
He will be for at least the remainder of our visit.
We're choosing to be grateful for the 28 hours we had here at the halfway house together and for Kenton's body responding to the treatments instead of being sad.
No, it's not ideal.
Yes, it is kind of crappy.
 
But, you know what?
It is what it is.
We still get to be together.
Just not like we had planned.
 
And that's okay.
 
Our Christmas has been so blessed.
We've received so many acts of kindness and love.
Our hearts have been filled to overflowing at the kindness and generosity of our family, friends, and strangers.
 
The true meaning of Christmas, Christlike love and service, have brightened our Christmas season and allowed us to focus on family time.
Thank you for loving us, for walking with us, for holding us up when we're ready to fall, and for offering up prayers on our behalf.
 
Merry Christmas, friends.
Thank you.