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.
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.

Sunday, December 16, 2012

[Sunday, December 16, 2012] Day 79

Let's back up just a little to Thursday, Day 76.
We woke up with an overwhelming sense of peace - so grateful to each of you that joined us in a fast for strength, peace, and knowledge.
Preliminary results from the tests on the abnormal cells indicate that the cells are either Kenton's old cells that haven't been kicked out of his marrow yet, and/or blasts (baby cells that haven't grown enough to determine what they are yet).
Steroids are finished as of day 79.
Cyclosporine (anti-rejection med) was tapered to 200 mg (? not sure if mg is the correct dosing. . .) from 400.
The hope is that Kenton's body will recognize the abnormal cells as what they are - abnormal cells, and remove them automatically.
This may happen through graft vs. host disease (GVHD).
GVHD in small amounts is beneficial as it shows that his body is understanding that there are cells there that don't belong.
GVHD in large amounts is scary.  GVHD can manifest in many many different ways.
Our prayers are that Kenton's body will be strong.
That it will recognize the abnormal cells as the "bad guys" and get rid of them...without him becoming too sick.
There are tests being run in Washington that may give more answers and a clearer path of treatment.  Results of those tests should be available at clinic tomorrow morning.
We're hopeful that those results will mimic the preliminary findings.
What all of this means, is that the magic date of January 6th - that day when we were going to move the boys back home and we'd all get to live together as a family again - may have to be postponed.
A detour.
But, to quote my super sweet friend Kristi, "Dang those detours, but they always seem to get us where we're supposed to be."
We'll be okay.
Kenton received TWO units of packed red blood at clinic on Thursday.
It was a very long day for the boys as they were there from 9:00 am until nearly 5 pm.
They said it was a super busy day at clinic.
McKayslin and Kenton talked Thursday morning at 7 just as they always do.
I talked to the boys at lunch time, just as we always do.
We skyped at dinner time, just as we always do.
Our new normal.
Grateful for technology.
Then Thursday evening, McKayslin and I were able to attend the Pickleville Playhouse Christmas play at USU thanks to a nomination by Hope Hansen and the generosity of Pickleville Playhouse.
We had a fantastic evening out!
The good news of the preliminary testing for Kenton combined with an incredible Christmas production that had us laughing through nearly the entire show just lifted our spirits and made for a really great night.
McKayslin even got to see Santa (again).
Of course, her main Christmas wish is to have her boys home.
Her secondary wish?
A room make-over.  :)
Friday we packed up after school and headed to SLC to see our boys.
Traffic was not exactly friendly, and it took us a long time to get there.
We eventually arrived, safely, and started our weekend.
Kenton opened his present from Madi.
The kids opened part of their 12 days of Christmas gifts from our Secret Friend.
We had dinner.
Watched movies.
Enjoyed the evening.
Saturday morning, I walked out of the bedroom to find this. . .
I {so big puffy heart} these two!
After breakfast and meds, Kenton and I headed off on a "mom date" to pick up the stuff so he could finish "Project Goose" - McKayslin's Christmas present from him.
He's so excited about this gift and has worked so hard to get it just right.
She's going to LOVE it!
We were out and about for a few hours.
Found what we needed from Michael's for Project Goose and picked up Elf on the Shelf - Buddy for Kenton and Holly for McKayslin.
Lunchtime struck and I knew I needed to feed Kenton.
We decided on Costa Vida, and thanks to Bertha (my phone voice navigator), we found Costa Vida, which happened to be right next to Sweet Tooth Fairy!  YAY!  BONUS!
We had lunch and headed back to the hotel after a quick stop for groceries.
Luke and McKayslin were just enjoying a good lazy day watching movies and hanging out in their jammies.  :)
Later, Kenton and I headed back to Sweet Tooth Fairy for another little treat for Goosey, then back to watch movies and play games.
Christa came with cute gifts for our family - and a gift that will allow each of us to choose a gift for another person in our family at this Christmas time.  A gift that came with STRICT orders that was the ONLY thing this gift is to be used for.
Sunday morning. . . CHURCH!
We headed up to PCMC for sacrament meeting.
We love the branch there.
Pres. and Sister Cornelious, the branch presidency, the members of the branch - they're fantastic and have been such an integral part of Kenton's treatment.
Then back to the hotel where Favorite and Uncle Frank met us with an incredibly generous gift from the extended Kent family.
We've been so incredibly blessed over the past 6 months in every possible way.
Just this month, we've had donations made that will allow us to proceed with life for the next couple of months without worrying about Christmas, gas money, grocery money, or how we're going to pay our bills.
THANK YOU for loving our family and providing for us, allowing us to focus on what we need to focus on at this point in time.
After lunch, we played some games, watched some tv, and then it was time for us girls to pack up and head back home.
Always a sad moment.
But. . .FIVE SLEEPS till we get to spend ELEVEN DAYS with our boys!
Our drive home was really good until the top of the canyon right at the snow sheds when it was like a switch had been thrown!
We passed the top of the canyon right into slushy slick roads and snow!
McKayslin closed her eyes and said a prayer for us to be safe.
We drove about 30 miles an hour through the canyon.
Made it home safely.
She then closed her eyes and said a thank you prayer.
I just have to say that my kids are awesome.
LOVE them so much!
We arrived home, unpacked the van, took care of Sparky, talked to the boys, had some dinner, and McKayslin went to bed.

It's been another very good weekend.
Clinic tomorrow.
Praying for continued good results from the testing.
Praying for Kenton's body to be strong and work like it should.
Grateful for all of the prayers and faith on our behalf.
Thank you.

Monday, December 10, 2012

[Monday, December 10, 2012] Day +73

Kenton had clinic today.
Luke said he could tell something was different when Brenda walked into the room.
The results from Thursday's bone marrow aspirate showed 2-3% abnormal cells.
They'll quickly taper steroids.
And then taper anti-rejection meds.
We're praying that Kenton's body will be strong enough to fight these abnormalities.
That's the hope.
They'll keep tabs on his blood with weekly blood draws.
Make decisions and changes based on those and weekly clinic visits.
On Sunday we were so excited thinking that January 6th life would return to some semblance of normal when the boys finally moved home at the end of the 100 days.
We had such a great "normal" weekend - did a little bit of shopping, had some take-out (5 guys, yum!), went on a carriage ride at Thanksgiving Point, went to church, and just really enjoyed our time together.
Now things are up in the air.
Not sure if they'll get to move home.
Our hearts are heavy.
There are many worries associated with this new development.
We would appreciate your prayers for strength, wisdom, and peace.
As we enter the Christmas season, we are grateful for the birth of our Savior and His atoning sacrifice.
And we're thankful for each of you.
Many angels walk this path with us each day.
Your kindnesses, service, and love lift us.
May you feel of our Savior's love.