[July 18, 2012] Wednesday. Day 33. . or 34? I have no idea.

Remember when I said we'd figured out how to have Kenton not throw up in the mornings?

Um, well, that was a bit premature.

This morning he threw up twice before 7 and once more before 8.

Uuuggghh.  Poor kid.

Not sure what's going on with him.

Finally around 8:30, his stomach seemed to settle and he had a great day.

He ate some toast, some graham fish crackers, some mac and cheese (keep reading for the recipe - sooooo yummy!), more toast, some macaroni salad (weird, I know - but it was really just noodles, shredded cheese, and miracle whip/mustard/milk mixed together with some garlic salt), and drank a LOT of Gatorade.

There were a few episodes of ". . .ummmm, my tummy doesn't feel so good. . ." but he didn't throw up again.

I called and asked for a prescription of Ativan.

Gratefully they called it right in to Reed's and Luke picked it up on his way home.

The whole morning, Kenton just hung out in the tv room on the couch, watching tv.

Lots and lots of Animal Planet and History Channel.

At one point he was watching the exact same Cheetah documentary we watched at 2:00 AM the first 2 nights we were at the hospital.

Um, yeah, it wasn't that thrilling the first two times. . .

Later in the morning, Kenton started to feel pretty good.

Or at least better than he had felt all morning!

He and McKayslin broke out the paper airplane kit from Kellen and started creating.

Oh, my, did they have fun!

They had paper airplane flying contests.

And wars.

And then they traded in their airplanes for Nerf guns.

Oh how I love to see and hear them playing like normal kids.

The giggles just made my whole day.

Having a day like this right in the middle of this whole crazy reality was a huge blessing.

We're going to be okay.

Maybe not right now.  Maybe not next week.  But we WILL be okay.

At lunchtime, both kids were hungry (they should have been - they played so hard!), and I'd found this recipe on Pinterest (yep, wasting time, pretending that life was normal) for mac and cheese in a mug.  Mac and Cheese sounded good to the kids, so I thought we'd give it a shot.

Oh.My.Yum.

Almost as easy as Easy Mac.

And a heck of a lot tastier.

We're calling it MicroMac.  ;)

In a 2 cup microwave safe bowl, combine 1/3 cup noodles (we used rotini) with 1/2 cup water.  Cook in 2 minute increments, stirring after each, up to 6 minutes until noodles are done and water is absorbed.  (It took 6 full minutes in my 1000 watt microwave).  Stir in 1/4 cup milk and 1/2 cup shredded cheese (we used the fiesta blend finely shredded from walmart).  Microwave for 1-2 minutes until cheese is melty and sauce is thick.  Stir well.  Let cool, stirring occasionally, to eating temperature.  Season to taste with salt and pepper.  Since we're supposed to be keeping track of what Kenton eats (he's lost 5 pounds since he came home - combined with the 15 he lost at the hospital - they're a little bit worried) - I figured the calorie count on this.  296 calories per serving. 

Both kids LOVED it!

I did too.  Cheesy.  Delicious.

The afternoon was pretty laid back.

TV.

Games.

Just hanging out.

Being together.

Enjoying the afternoon.

Luke came home.

We had dinner.

Our after dinner discussion was centered around what to expect tomorrow.

Tomorrow is clinic day.

Kenton's nervous.  Or was.  Not so much after we talked for a while.

McKayslin is worried.  Still.  But looking forward to playing with her friends all day tomorrow.

I'm grateful.  Luke decided to come to clinic with Kenton and I.

McKayslin and I buzzed both boys' heads again.

Weirdos thought their hair was too long.

Whatever.

Kenton showered.

Luke packed the car for tomorrow.

Including suitcases for Kenton and I just in case.

I'd much rather be prepared if for some reason they make Kenton stay.

We played 2 games of UNO Roboto.

LOVE that game.

LOVE how it makes my kiddos laugh.

Such a great evening.

We said prayers.

Tucked the kids in.

Had some ice cream.

Watched some tv.

A nice normal-ish day.

Just what we needed to prepare for tomorrow.

Prayers are appreciated.

Not sure what to ask you to pray for.

Definitely for McKayslin. 

And for Kenton.

Safe travels.

Good news. 

That would be wonderful.

Peace.  Comfort.

Those would be wonderful as well.

We'll know more tomorrow.

And that, my friends, is day 33.  Or 34.

I thought it was 33, but tomorrow would be 35 because it's Thursday (7x5 = 35).

Hard to believe we're FIVE WEEKS into this mess.

Glad to see those five weeks behind us.

So. . .that's day 33/4.

I'll figure it out later.

I'm going to bed.

(Right after I take out my contacts, brush my teeth, say my prayers, and give Kenton his IV infusion - but Luke is going to do that - so grateful).

Good night.

Thanks for being here.

For the Facebook messages, the texts, the prayers, the faith, the countless acts of service. Thanks.

[July 17, 2012] Tuesday. Day 33

We *may* have figured out the trick to keep Kenton from throwing up first thing in the morning!  Of course, tomorrow things may all be different, but for this morning, we were successful.  A slice of bread with peanut butter and jam with 10:00 meds, and half of a granola bar with 6:00 meds seemed to do the trick for today.

We all slept in this morning.

Well, all except poor Luke who has to be to work at 4.

McKayslin and I got up around 9:30.

Kenton slept till 10.

We all had breakfast.

McKayslin went to play at Jelly's house.

Kenton and I hung out here.

We're just about loads of fun these days.

Kenton doesn't really want to do anything because he gets so tired and then feels yucky.

I don't know what my deal is.

It's hard to be the caregiver of a sick child.  At the hospital, you're so focused on learning everything you can because you know that you'll be in charge of most of that when you come home.  You're there to take care of everything your child needs.

Then you come home, and all of that responsibility of medicine giving, monitoring, feeding, hydrating, etc. is now yours, right along with the responsibility of cooking, and laundry, and cleaning, and being a wife and a mom to your other kiddo.

Don't get me wrong - I LOVE being home!  I LOVE being the one making meals for my family and doing those everyday boring things like laundry and vacuuming and dusting and cleaning bathrooms (oh, wait, Luke actually does that part, lol).

Luke actually does a lot more than just that.  I'm pretty lucky that way.  He does dishes and helps with laundry and cleaning and does all of the outside stuff.

But. . .I am worn.right.out.

Luke actually threatened to send me away tomorrow afternoon.

Just me.  In the car.  To go wherever and do whatever I want.

As nice as that sounds, I know I'd feel totally guilty when I returned.

Hard to find a balance.

Yet, I know I need to refresh and regroup before the next hospital stay or I'm going to be a MESS.

Hmmm. . .interesting tangent.

I'm leaving it there.

This is a blog to document our journey through this horrible wasteland called leukemia.

Perhaps someday someone else will need to hear that they're not the only one feeling that way?  Or perhaps someone has some sage advice for me?  I don't know.

Whatever.

On with the day.

Kenton actually ate quite well at lunchtime - almost a whole ear of corn and 3 chicken nuggets.  Sad that is considered eating well.

McKayslin came home.  She ate.

We watched some tv and did a whole lot of nothing all afternoon.

I made Kenton have a little nap.

He wasn't happy about it, but he did fall asleep almost immediately, so I'm guessing he needed it.

We needed to run to the fabric store to get some fabric for a project McKayslin is doing.  Just she and I were going to go, but Kenton wanted to come along for the ride, so we all went.  We got to Joann Fabric and Kenton felt sick.  Luckily we've learned to just keep a barf bucket handy.  McKayslin and I went into the store and picked out her fabric.  Luke and Kenton stayed in the van.  We came back out and came home.  Kenton felt yucky all the way home, but didn't throw up - at least not in the van.

I started dinner.  It's Tuesday - sometime on Tuesday you just have to have blueberry pancakes and buttermilk syrup!  That was dinner.  Kenton wasn't feeling super great, but not super yucky either.  He ate a pancake.  And threw up.  Nice.

I went out and picked the few raspberries that were ripe on our bushes.

Is it sad that I'm glad that our raspberries aren't doing so well this year?

I'm kind of concerned about my soon to be abundant green beans, tomatoes, and peppers.  Praying that they'll wait to be ready to be harvested and bottled in August.

Kenton waited a little while, and tried again with another pancake.

That one stayed put.  So weird. 

I hate to give him Zofran too often because lately he gets a rash when he takes it.  Then he has to take Benedryl.  Then he is soooooooooo tired.  Uuuggghhh.  No Zofran for the day.  He wanted to go without it and see if his body would just let him eat.

We'd just gotten the kids to bed and I was in talking to McKayslin.

She's really having a hard time with this whole thing.

I can't even imagine being 8 years old and having your whole world tipped upside down.

She is trying so hard to not be jealous of all the attention/gifts that Kenton receives.

She understands.

But. . .when you're 8 and all anyone ever talks about is your brother, well, that gets a little tough.  She's worried, too.

How in the world does anyone ever figure this crazy journey out?

As I hugged my sweet little girl, I prayed that somehow we could make this better for her.

That someone would understand what SHE needs and do something JUST for her.

Luke came down the stairs just then with a gift that Sister Nebeker had dropped off.

A gift that was ONLY for McKayslin.

There wasn't a single thing for Kenton in that delivery.

Immediately the quote from President Kimball came to mind:

“God does watch over us and does notice us, but it usually through someone else that he meets our needs.”

I know that this gift has been weeks in the making (Sister Gittins asked McKayslin her favorite colors and animal a couple of weeks ago when the Primary Presidency visited the hospital).  However, how amazing to me that the gift and the note (that was exactly what McKayslin needed to hear from someone OTHER than her parents!) were delivered at the time that they would bring the most comfort.

I am so grateful for friends that listen to the promptings of the Holy Ghost.

This really was an immediate answer to a prayer.

These miracles amaze and strengthen me.



We'd just resettled McKayslin into bed when we heard a knock on the door.

This is becoming a nightly thing.

Maybe we put the kids to bed too early?

It was Bob and Judy.

Definitely worth answering the door for!

We had a great visit and Kenton loved hanging out with them.  Bob is one of Kenton's favorite grown ups!  Judy brought super yummy peanut butter cookies (must.get.that.recipe).  So glad they stopped by!

We tucked the kids back in and settled in to watch some tv and have some popcorn.

This is an old normal.

Nice to be able to include it once in a while in our new normal also.

Tonight my heart is filled with gratitude for those who listen and respond without any want for recognition.

And that, my friends, is day 33.



[July 16, 2012] Monday. Day 32

Today was a pretty low key day.

Kenton woke up feeling a bit yucky.  We need to figure out what mix of meds/food work best so he doesn't wake up feeling like he needs to throw up.  :(

We had some breakfast.

And waited around for the home health nurse.

I mixed up a batch of homemade bread.

And we waited.

And waited.

She arrived 2 hours late.

She said that her previous patient had many more problems than she could have even anticipated.  I was feeling really cranky about the whole thing, but then gave myself a figurative smack upside the head and realized that at some point Kenton may be the patient that needs more time and I would appreciate knowing that the nurse would take that time rather than just move on because that was the "schedule."

She changed the picc line dressing, checked the drainage tubes in Kenton's armpit, changed the caps on his lines, and drew blood.

Sister Ryan came during this whole process to give us a kind and generous offering from the ward.  I really can't express how much I love this Hyrum 8th ward!

As Sister Ryan was leaving, she asked if McKayslin would like to go to the dam and play with the girls today.  Of course she would!

Home health finished up.  I fed the kids some lunch and McKayslin got ready to go play.

While she was gone, Kenton and I played some UNO and watched some TV.

He's frustrated and kind of angry that even though we're home, his activities are limited to essentially what they were in the hospital.

I get that.

But. . .until his counts recover more, I'm not going to take any chances.

Luke came home, mowed the lawn, Kenton and I watched more tv.

Nicole (our oncology nurse from PCMC called).

White count dropped to 0.8, hemochrit dropped a little, ANC stayed at 100 (good thing they didn't keep Kenton at the hospital till it came up, lol), but. . .platelets were higher than they were on Thursday.

I really have no idea what any of that means.

None.

I should probably figure it out.

Maybe.

Even though counts are what they are, our oncologist still wants to go forward with the scans, clinic, and procedures on Thursday.  I suppose we'll find out more then.

Luke finished the lawn and came in to shower.

I went to the grocery store to buy the necessary groceries to fix the meals Kenton thought sounded good.  He's lost 5 more pounds since we've been home.

Nothing really sounds or tastes great.

When he does eat it's only tiny amounts.

It's crazy to me that McKayslin out eats him now.

While I was gone, McKayslin came home and showered.

I got home, fixed dinner (malibu chicken, corn on the cob, and watermelon).

We ate and put the kids to bed.

Kenton came out of his room and said he'd heard a knock on the door.

I ran upstairs and he was right - Grandpa Mike and Grandma 'Nette were here.

Kenton came up and visited with them for a while.

McKayslin came up, too.

It was good to see them and spend some time just visiting.

Kenton showed them all his treasures and they responded with appropriate awe.  ;)

Just as they were getting ready to leave, Kellen came over and brought Kenton a couple of really fun kits (paper airplanes and origami) for him to use when he goes back to the hospital.  We sure have great neighbors!

They left right in the middle of a huge rainstorm.

We put the kids back to bed.

Watched tv for a bit.

Started Kenton's IV infusion.

Went to bed.

I was going to get up and change out the infusion, but I had a little Goose on my arm, so Luke did that part for me.

It wasn't a great night for sleeping here.

Not sure why.

I guess some days are like that.

And that, my friends, is lame-o day 32.

[July 15, 2012] Sunday. Day 31

After a quick discussion with Bishop McDonald last night, in regards to the fact that the entire scout troop, their leaders and fathers, had been exposed to a nasty flu bug, Kenton's ordination to the office of a deacon was moved from after sacrament meeting in the Bishop's office to before church on the stage.  We tried to get the word out, but know there are several friends that were missed.  Our hearts are saddened by this so much.  Please know that any oversight was exactly that - an oversight.  We were not trying to exclude anyone.  Please accept our apologies.

We woke earlier this morning than any morning since we've been home, and proceeded to eat and dress for 'church.'  Kenton worked himself into a bit of a sick stomach being so worried about breaking the rules and being ordained before being presented and 'I haven't been to church in so long is it really okay to proceed?'.  Thankful for that zofran prescription even more now.  ;)

We arrived shortly before 9:30 to find friends and family already gathering on the stage.

Kenton was masked and seated as the others arrived.

At 9:33, we closed the doors and proceeded with the ordination.

Luke offered a beautiful blessing in addition to the ordination.

The Spirit was so strong.  Many tears were shed.

Another witness that Kenton is a strong fighter and an example to those around him.

We are so grateful to those that were able to share the morning with us.

(Just for my memory: Grammy, Grandma and Unk, Grandpa, Kenny and Quin, Maughans, Benji, Brad and Joanne, President Acevedo and family, Coach and kids, Mangums, Christiansens, Bishop McDonald and Brother Arnell. . .I feel like I'm forgetting someone!!).

We truly missed those that were unable to attend either because of illness (seems the stomach bug decided to take up residence in my extended family also!), or short notice (or lack of notice as we've discovered later in the week!!).

Our deepest apologies go especially to Bob and Judy.  We would have loved to share this day with you.  Kenton missed you deeply. 

Directly following the ordination, Brother Arnell set Kenton apart as the secretary in the Deacon's Quorum.  Kenton was promised that even with scheduled hospital stays and "quarantine" time, he'll be able to fulfill this calling.  More tears were shed.  What a blessing to have priesthood leaders that are willing to allow and encourage Kenton to be involved with his new quorum.  The Hyrum 8th ward is an amazing place to be.

Following Bishop's directions, we quickly exited the stake center to return home.

We packed Grammy's car, sent her on her way home, and got everyone settled for a restful afternoon.

Brother King called to ask if we'd like the sacrament brought to our home.

Specifically he asked if Kenton would like to pass the sacrament to our family.

Amazing.

We played the game "Mormon Mouthful" for a while.

Aunt Joy stopped for a quick visit.

C.J. and Mitch arrived with the sacrament and were so incredibly reverent and respectful as they prepared and blessed it, with careful instruction to Kenton how he should pass the sacrament to our family.  More tears.  The Spirit was so strong again.  These two wonderful young men brought such a strength and testimony into our home.  We really appreciated their willingness to take time out of their own afternoon to serve our family in such a tender and personal way.  What a great experience for us all!

We ended the evening watching "Despicable Me" (probably our all time favorite family movie!).  It was a beautiful Sunday.

So grateful for the gospel and loving priesthood leaders, family, and friends.

And that, my friends, is day 31.

[Kenton's Cards] Set 1

Kenton really wants to do something to help out some of the other families here in ICS.

He is so grateful for the help and support that we are receiving and realizes that not everyone here gets that same kind of support.  Kenton's a tender soul.  He wants to help however he can.  But there's not a whole lot he can do being stuck here at PCMC day after day.

Any of you that know Kenton personally know that he LOVES to draw.

Horses are his specialty.

Today he designed this card set. . .

Starting bid is $1.

Bidding will go through tomorrow (Tuesday) evening.

Highest bidder gets this set.

He'll have another set available soon - at least one set each week that Kenton is here in ICS.

You'll get all 4 cards and envelopes.

If you're local, we'll deliver you to them.

If you're not, we'll mail them to you.

Highest bidder gets this set.

Bidding starts at $1.

You can either pay with cash or check or I can send you a paypal invoice and you can pay that way.  All money collected will go to help another family here on the ICS floor.

Even $5 will buy one meal for a parent staying here with their child.

We'll take the money collected from this set, buy a Rainbow Cafe (the PCMC hospital cafeteria) gift card, slide it into an envelope and have it delivered to one of the families here in ICS anonymously.  There have been 3 new patients arrive today.

Speaking from experience, I know that their lives have been turned upside down.  They are exhausted.  Terrified.  Worried about the whole financial aspect of the diagnosis and treatment.  Sick knowing that your baby has just been diagnosed with a life threatening disease.  One simple kindness such as a meal that you don't have to pay for can lighten the load just enough so you can actually take another step.

Thank you for helping Kenton help make someone's day a little brighter and load a little lighter.

Please check the comments and make sure that your bid is higher than the previous comment.  :)

In your bid, please leave your preferred method of payment (if it's paypal invoice, please leave an e-mail address also).

Thank you!!!

[July 8, 2012] Sunday

Sunday.

Counts totally tanked.

No bueno.

Luke and McKayslin were still here.

I left them here playing UNO with Jacqueline, and went home for a shower and a suitcase full of clean clothes for the week.

It was a nice peaceful drive all by myself where I could talk out loud and say all of the things that were rattling around in my head.  I could cry and be angry and no one could see me or hear me.  I could just drive in complete silence. Or with the music up as loud as I wanted.  It was a nice break.

I got home, unloaded all the stuff from the car, showered quickly, repacked my suitcase, hugged Grammy and thanked her for the sandwich (mmmm. . .roast beef!! REAL food!!!!!), and was back on the road within an hour.

(Yep, it was half gone by the time I reached center street - my body was so starved for REAL food - not cafeteria food!).

While I was gone, Kent and Kathy stopped by to visit with Kenton.

He and Kent have grand plans when Kenton gets home. . .something about rock salt, a pellet gun, the double barrell rubber band shotgun, and flies?



The view from the freeway right before my exit.

The view I see when I'm close to our "temporary home."

Lonnie and Ty-Ty came to pick up Luke and McKayslin about 5.

So grateful for kind friends who take hours out of their day to play chauffer.

They headed off for home.

It's always hard to say good-bye after a fun weekend together!  :(

Kenton and I hung out here till after meds, then went out to the patio for some reading with Duke the Dog, a blanket, and finger lights because it was getting dark.

We read for a while (a couple of chapters in the new book that Mrs. Hall sent).

Then we headed to bed.  Nurse Erik was our nurse.

He was super stealth ninja nurse.

We didn't hear him come in at all.  Not even during IV meds at 2 or vitals at 4!

Kind of a lame day.

But lame is so much better than crazy.

Yes, counts tanked, but. . .they WILL go up eventually, and if there is a chance of infection at all, it's better to be sequestered here at PCMC.

Of course, we'll keep praying for counts to recover.

I had a hard time wanting to go to sleep.

Going to sleep on Sunday nights means that our family time is officially over and we are back to living in two separate places.  That's one of the worst parts of this whole adventure.  :(

And, that, my friends, is day 24.

[July 7, 2012] Saturday

Counts were ALL up this morning!
YAY!!!

Luke and McKayslin came and we had breakfast together in the room.

Welcome to our new normal.

We're adjusting to doing things differently.

It was nice to be together eating a meal as a family as different as the location and circumstances may be.

The kids had a good time arm wrestling on the bed.

Not sure who won.

Sure was fun seeing them laugh and play together!

McKayslin and I left to head over to Gateway and have a girls' day out.

I needed a break from the hospital.  It's pretty wearing being here day after day.

Kenton needed a break from me also.

He and Luke hung out and did whatever all day.

I really don't know what they did.  lol.

Hopefully they didn't get in too much trouble while we were gone!!!

We had lunch at Costa Vida. . .

Went to Build-A-Bear. . .

 

(meet Bubbles the Octopus and Duke the Dog). . .

Played in the fountains. . .

And brought back carameled apples for a treat. . .

It was a super fun afternoon, but McKayslin could hardly stand being away from Kenton for that long.  Next time maybe I'll just escape by myself. . .

When we returned, our friend Jason was just leaving.  He'd been here to visit Kenton and Luke.  I was talking to him and didn't get a chance to take any pictures of McKayslin giving Kenton his Duke Dog.  I know he LOVES it though becuase it hasn't left his side since she gave it to him!  :)

I came back to the room and Cal and the kids were here.  It was loud and crazy fun!  McKayslin and Ella played with Bubbles the Octopus while the boys played with whatever they could find.  Boys are weird that way.

While they were here, Sean and Cathy stopped by with a huge stack of movies (classic westerns and old classics) for Kenton to borrow AND the coolest double barrel rubber band shotgun that Steve had made and everyone at the big Uncle Dar and Aunt Jenean reunion had signed.  It's been a HUGE hit!  Even Tech Tommy took a turn target shooting (and later let Kenton shoot him in the back - crazy kid!)!!

Kenton guarding his dinner with his shotgun. . .

We ate dinner in the room together.

Then Luke and McKayslin headed back to Nate and Rachel's and Kenton and I waited for his meds to finish and then went for a walk down to the 3rd floor patio.

We read the last 4 chapters in Stone Fox and then came back to the room for bedtime.

Kenton is feeling really quite good.  It's nice to have him unhooked from his IVs for so many hours during the day so he can play and do something besides lie in bed and watch tv!  We're praying for counts to improve again tomorrow, but know that the name of the game is 1 step forward, 1 step back. . .but we know that faith in the Lord also means faith in His timing.

And that, my friends, is day 23.



[July 5, 2012] Thursday

Today was a good day.

Counts didn't drop.  They didn't gain, but they didn't drop.

We're praying for steady gains, regardless of how tiny, because steady gains get us home sooner.  However, we're grateful for holding steady instead of dropping.

 

Platelets were low this morning.

16.

That's no bueno.

 

But, guess what?!

It's Thursday.

Do you know what that means?!

BLUEBERRY PANCAKE BUTTERMILK SYRUP DAY!!!  :)

(aka the BEST breakfast day ever!).

Kenton looks forward to Tuesday/Thursday breakfast every week.

Awww, who are we kidding?  So do I!!

He ate TWO pancakes this morning.

Yay!  Well on his way to getting rid of the nightly TPN and LIPIDS infusions.

 

Around 11, they transfused one unit of platelets.

Platelet count then came in at 48.

Much better!

 

Lunch was chicken noodle soup and some bites of brownie.

Pretty good.

 

The mail came.  A card from Grammy and a book from Mrs. Hall.

Awesome.

 

Our friends, the Brown family, came to visit around 1:30.

Brought some super delicious Tiger's Blood Pace Bars.

The kids had a popsicle party and played Legos and Guess Who.

So fun!

Thanks, Sherrie, for the restock of the Tiger's Blood bars!
You'll have to come back again for a rematch of Guess Who since T and Kenton are tied at one game each!!

Later in the afternoon, Mrs. Moser came with her kiddos.

So fun to see Kenton and Cam playing around like normal pre-teen boys.

We had a good visit while the kids enjoyed playing with all of Kenton's toys, shooting each other with the syringes, and just hanging out.

 

They'd not been gone long when Richmans (Greg, Ann, and Shandee) came and brought a wonderful treat.

Kenton ate half.

He probably would have eaten more, but, um, well, the other half kind of disappeared...

It was another fun visit.

3 in one day and Kenton was getting T.I.R.E.D.

Dinner was kind of a bust.

Kenton (with some encouragement) ordered chicken nuggets and fries.

Ummmm, well, bad idea.

Half of a chicken nugget, a few fries, and he was done.

He ordered ramen again instead.

At least that tastes good and doesn't hurt his stomach!

Ramen all gone.

No TPN or Lipids tonight!!!  YAY!

But. . .fluid via IV because he's not drinking enough.

We'll work on that one tomorrow.

I'm sure he'll be thrilled.

Reading until Skype time when I look over and see him sound asleep with a book open in his lap.  Ha, ha, guess who should have had a rest this afternoon when Mom told him to?!

We skyped with Grammy and Goose and Dad.

Got ready for bed.

IV fluids are hooked up and set to run all night.

Fortaz has been given via IV.

Kenton's reading until his 10 pm meds are ready, then it's off to dreamland.

Another really good night's sleep is definitely our wish.

Tomorrow Daddy comes to trade off.

 

Grammy and Goose and I will spend the weekend together.

I'll come back on Sunday.

We're really REALLY hoping that Kenton's counts trend upward so we can be home for his GOLDEN BIRTHDAY (12 on the 12th of 2012!!!).

If not, we'll be having one heck of a birthday bash here in room 4417. . .

 

Hard to believe that at this moment 3 weeks ago we were here, checking in to this room with a brand new diagnosis of leukemia, joining a club we didn't want to join.

 

We've learned so much in the past 21 days.

Things we could have gone our whole lives without knowing.

 

But. . .on the flip side?

 

On the flip side, we've experienced miracles and blessings that I wouldn't trade for the world.  We have learned more about our family, our strength, our faith, our ability to fight and learn and pull together than we ever could have had life not hit this speed bump.

We've been blessed with a community that has offered complete and total support financially, emotionally, and prayerfully.  

 

We've found out that we have the most amazing friends ever.

 

The flip side is pretty darn amazing.

Humbling.

Strengthening.

Down right incredible.

 

3 weeks of taking everything thrown at us, and somehow responding much like  Weeble-Wobbles. . .popping right back up with a smile ready for the next adventure.  Kenton's been a rock star through this whole thing.  Rarely does he get frustrated or upset or angry.  If he does, it's just a brief moment and then he pulls himself up by the bootstraps and is back to the kid that everyone loves.

 

We credit his amazing response to treatment in a big part to his incredible attitude.

He's a pretty great kid.

 

As parents, we look at Kenton and McKayslin and wonder how in the world we got so lucky?  I don't know of two stronger, more valiant, loving kids.  They teach us so much.

 

Yep, the flip side of this whole crazy ride is the opportunity to step back and reassess - figure out what REALLY is important.  And then do everything in our power to focus on that.  We're lucky that way.  

 

Thanks to all of YOU, we get the luxury of focusing on getting Kenton better and keeping our family strong without worrying about the day to day things.  Our lawn is mowed (thanks to the Acevedo boys), our garden weeded (thanks to Cia), our flowers and lawn watered (thanks to Ken), our Sparky Dog walked and fed and played with (thanks to Kara and Bryson), our meals prepared and lovingly delivered (thanks to the Hyrum 8th ward and a few other friends), and so many other daily things done for us, that are literally keeping our heads above water as we fight this battle.

To each of you that offer daily prayers on our behalf, who are so generous with your time, your talents, your resources, your organization of countless fundraisers and events to help us get through this - THANK YOU!

I can't even begin to name names because Team Kenton has so many members.

You're incredible.

I wish I could personally thank each of you.

For the rest of our lives, we'll be looking for opportunities to serve others - to repay the many kindnesses shown to us!

 

THANK YOU for fighting this battle with us - side by side in the trenches.

 

We know you're right there, prayerfully, faithfully walking with us every step of the way.

We feel your strength, your prayers, your faith.

 

We couldn't do it without you.

Love you all!

 

3 weeks.

Countless lessons.

Unmeasurable blessings.

Daily miracles.

Day 21 is a day of gratitude. 

And that, my friends, is day 21.

[July 4, 2012] Wednesday

This is what I saw first thing this morning. . .

My beautiful bald boy snoring gently, sleeping soundly.

So grateful for Nurse Carla who was, by far, the quietest nurse we've had since our arrival.

I only woke up briefly ONE time when she was in during the night, and Kenton didn't remember waking up at all!

Counts dropped a bit over the night.
That's expected, but still puts a slight overcast on the day.
Kenton's counts had previously made a three day growth - very small growth each day, but growth was showing on the slides.
As soon as his counts recover enough, we get to go home for a few days, so prayers for positive recount recovery are super welcome!

He woke up a little after 8, just as Luke and McKayslin arrived.

We had breakfast together and then the kids had a great time just being kids (as normal as we could have life be considering we're stuck in the hospital room!).

They watched Disney Channel, played hospital bingo and won super cute prizes, made fireworks pens and 4th of July spinner decoration thingies,  and had lunch together.

So nice for them to spend that time together.

What a relief that McKayslin is finally feeling comfortable with this new reality!

She doesn't like it one bit, that's for sure, but at least today she was willing to climb up in the bed by Kenton, rub his stubbly head, and play games/do activities with him.

As a mom, it hurts my heart that I can't have both kids in the same place at the same time all the time!  :(

Luke and I had gone down to the playroom to get the kits for the kids to make the pens.  We stopped on the 3rd floor where they have a piano and I sat and played hymns for a little while.  Luke sat and listened and then came back upstairs to be with the kids.  I stayed there at the piano, playing hymns for another 15 minutes or so.  

Something so simple, such a short amount of time, that totally refreshed my spirit.
I just randomly flipped through the hymn book, playing whatever hymn was on the page.  The words to each hymn were exactly what I needed to hear yesterday.
Funny how that works, right?  ;)
My most favorite?  Hymn 144, vs. 3. . .

When sailing on life's stormy sea,
'Mid billows of despair,
'Tis solace to my soul to know God hears my secret prayer.

I returned to the room to find this:

LOL.  Love my family!

We had some lunch.  Luke and McKayslin left for home.  Kenton and I watched a movie.
His friend Jace came with his family to visit.  That was fun!

Luke and McKayslin stopped at City Square so McKayslin could have some traditional fun on the 4th.  

McKayslin rode on the Team Kenton wagon ride (a couple of times!), played with Paigey (yay for awesome friend time!), climbed the wall, ate a few sno-cones, and then rode on the horse.  Nick said, "Your job is to hold on.  And if the horse bucks, you yell 'Yee-Haw!' really loud!"  Luke said her eyes got really big and then she giggled.  I'm sure she knows that Nick would never put her on a horse that would buck.

Luke said the Team Kenton signs were everywhere!  We are so blessed with such an incredible support system.  I can't even imagine trying to do this without all of the help we're receiving!  The prayers, the donations, the signs, the way the community is pulling together is incredible!

Kenton and I just hung out here and waited for dark.
He started out wrapped in his "Katie" blanket sitting on the window ledge watching fireworks and eating ice cream, but then moved to the rocking chair.

We had a great view - seeing about 5 different fireworks displays!

Luke and McKayslin played up at the soccer fields with Christiansens and then walked over to Favorite's to watch fireworks.  It was pretty crappy spending our favorite holiday in different places and missing out on all of our traditional stuff, but we know this is just a blip on the radar and life will continue as normal once we get past this!

We appreciate your prayers, donations, messages, pictures, visits, and love!

And that, my friends, is day 20.