{March 20, 2013}

March 20, 2013

Dear Kenton,

It's raining this morning.  When I took Sparky out to go potty this morning, the rain had just started and the air was filled with that fresh clean rain smell.  I smiled as the smell triggered a memory for me - the trip we took for your 3rd birthday.

Do you remember that?  We went to Bear World on our way to West Yellowstone.  Then we stayed at that dumpy little hotel made of all cabins there in West?  We loved it though.  We spent each day doing something fun - Grizzly Discovery Center, Yellowstone National Park, The Playmill.  And every afternoon, true to form for West Yellowstone, a huge thunderstorm rolled in.  The first afternoon we had just checked into our little cabin and sat on the porch watching the rain roll in.  As the storm started to let up, the parking lot was filled with HUGE puddles.  It was a really warm day.  You took my hand and started for the parking lot.  We spent a good hour splashing in puddles.  Your giggle made Daddy and I laugh.  You LOVED being able to run and jump in all that water.  We had a great time. 

On the way to school this morning McKayslin and I listened to the song "For Good" from Wicked (remember how we listened to that about 121 times the summer of 2010?!).  The beginning line of the song, "I've heard it said...that people come into our lives for a reason, bringing something we must learn..."

I've been thinking about all of the things you tried to teach us in your short 12 1/2 years.  Today I think the lesson you were trying to get me to remember with the rain trigger memory is to enjoy the little things - puddles, rainbows, giggles, the first snow...

We're doing our best to keep our promise to you that we'll still do fun things as a family - that our family traditions won't go away.  It's different without you.  Daddy and I aren't nearly as fun as you.  ;)  We're trying.  I promise.

When we read scriptures tonight, we read in Enos vs. 27: And I soon go to the place of my rest, which is with my Redeemer; for I know that in him I shall rest.  And I rejoice in the day when my mortal shall put on immortality, and shall stand before him; then shall I see his face with pleasure, and he will say unto me: Come unto me, ye blessed, there is a place prepared for you in the mansions of my Father.

Daddy and I were talking after McKayslin went to bed.  You knew it was time for you to go home.  And everyone that was priveledged to know you, to love you, knows that you were greeted home just as Enos was.  Thanks for sharing 12 1/2 years with us.  You're such an incredible kid.

"It well may be,

that we will never meet again in this lifetime,

so let me say before we part,

So much of me is made from what I learned from you...

You'll be with me,

Like a handprint on my heart."

We miss you, son.  So very much.

Thanks for sending us sunshine smiles and memory triggers. :)

"Because I knew you...I have been changed FOR GOOD!"

Love you much, handsome!

Love,

Mom

{March 19, 2013}

March 19, 2103

Dear Kenton,

8 weeks.  Sometimes it feels like you have been gone forever.  We miss you.  A lot.  We still cry nearly every day, but every once in a while, we go a whole day without tears (crying in the shower or the middle of the night doesn't count, right?!).  We talk about you often, lots of memories and remember whens.

People keep telling us how strong we are.  Or that we're amazing. That's probably because they only see us when we have our "game faces" on during the day.  Because we certainly don't feel very strong, and we certainly don't feel amazing.  We are just plugging along day after day trying to adapt, adjust, and heal.

I hate Tuesdays. 

7 weeks ago, on a Tuesday, we had your funeral and laid your mortal remains to rest. 

8 weeks ago, on a Tuesday, was the last time we heard your voice, held your hand, gave you hugs, and were together as an earthly family of 4. 

I know that families are forever.  This is the last family photo we have, taken that last Friday in the hospital - the week after they told us your leukemia and GVHD were untreatable - the day we spent all day playing our favorite games and watching our favorite movies...making forever memories.  We have a pretty great forever family.

I'm so grateful for that knowledge. 

But it doesn't make me hate Tuesdays any less. 

 

The other night we were watching videos of you and McKayslin - there is that awesome one of you guys being Pinky and Stripey last February.  It made us smile.  We watched the video of you and McKayslin reading "Me First!"  Love that book...haven't been able to read it since you left because it makes me cry. That's your all time favorite book.  I'm so glad you were able to share it with McKayslin before you died.  We watched the video of you singing to McKayslin and I via Skype.  Awesome!  Love your made up songs!!  :)

We have so many memories.  And, gratefully, so few regrets.  We're doing our best to honor our promise to keep up with our family traditions and to do fun things with McKayslin. 

I'd better go.  Time to get the Little Goose woken up and ready for school.  She misses you so much.  We all do.

Love you, handsome!

Love,
Mom

{March 17, 2013}

March 17, 2013

 

Dear Kenton,

 

8 weeks ago today we brought you home from the hospital.  It was a beautiful welcome home.  Little did we know that 2 days later we'd be telling you good-bye as you stepped so bravely into the next stage of your life.

 

Sundays are hard.  Watching the deacons pass the sacrament always tugs at my heartstrings because I remember watching you do just that only two times.  You were so excited to become a deacon and receive the priesthood.  The sacrament songs are always the hardest for me to get through because the messages contained are so much more personal now.  We've learned a lot about the Atonement over the past 9 months...and especially over the past 2 months as we've grieved and felt so broken without you here.

 

Today's hymn was one of your favorites - There is a green hill far away.  It's the one hymn you learned to play before you got sick.  The one you loved to sing. 

There is a line there that has been running through my head all afternoon...and trust in His redeeming blood... When we remember to do that - to turn our pain, our hurt, our sadness over to our Savior, we are able to feel peace and healing.

 
Mosiah 3:17: And moreover, I say unto you, that there shall be no other name given nor any other way nor means whereby salvation can come unto the children of men, only in and through the name of Christ, the Lord Omnipotent.

Mosiah 4:6-8. 

Today during ward conference President Acevedo reminded us how important it is to search the scriptures, ponder the scriptures, and how the lessons we need are there if we look for them.  We were in Doctrine and Covenants 138.  I marked these three words: REFLECTING (vs. 2-4), PONDERED (vs. 11), and WONDERED (vs. 28).

And I marked verses 30-35 and 56-59.  Missionary work among the dead.  In my heart I carry a picture of you as a missionary.  I know you're doing amazing things - sharing the gospel as you always have by example and with unrestrained love and conviction. 

 

We miss you, son.  We're grateful for our 12 1/2 years with you.  We love you.

 

Forever, for always, and no matter what.

 

Love,

Mom



[Eternity]

Kenton's Obituary

[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.



[Sunday, December 16, 2012] Day 79

Let's back up just a little to Thursday, Day 76.

Clinic.

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.

WE LOVE EACH OF YOU SO VERY MUCH!!!

 

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] 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.