[June 28, 2012] Thursday

So thankful for another good night.

You don't realize how much you NEED sleep until you don't get it for a while.

I love the care and attention that they give here at PCMC, but during the night, that care and attention can really create an environment that is less than conducive to sleep. . .

Kenton woke up once to pee.

And I woke up once around 4 when Nurse Erica was giving eyedrops (last time since the chemo has been stopped for 48 hours now!!) and checking vitals.

She couldn't get his lines to draw blood and decided that since his blood work looked okay yesterday, she'd let him sleep and they could deal with it on day shift.

So grateful for that.

Here's what I saw this morning when I woke up. . .

Lost in peaceful slumber where life is normal.

Where hair isn't starting to fall out.

Where you don't have lines hanging from your arm.

Or a rash covering your entire body.

Or a huge sore in your mouth.

Where food smells and tastes delicious.

You can run and play and do whatever you want.

The "infusion complete" alarm beeped.

I totally hit silent a few times and let my Kenton enjoy his dreams.

Reality hits too fast and too soon in here.

By 8, Kenton was awake and hungry.

But nothing sounds good.

He ordered some watermelon (it really has no taste, mom!), an apple juice, and Enlive nutrition drink (this tastes just wrong!) and a Sprite.  We made a cocktail with the Sprite, apple juice, and Enlive that tastes a little bit like Martenelli's sparkling cider (which he's never really liked).  He did drink some of it.

Nurse Cherie gave him a dose of Benedryl and a dose of Fortaz, then unhooked his lines and began the line flush with whatever drug that is that clears the lumens so they can draw blood.  Kenton was glad to change his shirt since he wasn't hooked to John and Wayne for a while.

He's just so tired still this morning.  I don't know how much is physical exhuastion and how much is emotional.  He's resting now.  It's so frustrating that I can't just fix this!

Dr. Rawlings came in and told Kenton that they were sending him for a CT scan later today to see if they could find the source of infection that was causing the fevers he's been having so consistently.  That we should plan on about 3 to head to down to CT.

The nutritionist came in and talked to Kenton about eating more.  Gave him some suggestions for foods that are high in calories and protein.

Right after she left, we were talking about food and he said, "A maple bar sounds really good!"  I practically sprinted to the cafeteria and came back with this:

LOL.  Plenty of options.
I should be honest and say that one of the peanut butter krispy treats was for me.
But we can say they were both for Kenton since I am clearly NOT needing to be on a high calorie diet.

Kenton chose the maple bar and ate half of it right away.

The other half we wrapped up for later.

We had just started a project when Heidi showed up at the door for a visit (she knew I'd never say to just come, so she did it anyway!) and brought a plate of homemade peanut butter krispy treats.  Heck, yeah, those are 100 times better than the cafeteria ones!  And of course, to have Heidi here just made Kenton's day (and mine, too!).

She came with us down to the CT scan.

Don't we look fab in our super sparkly safety suits?!  We were trying to find extra masks and use them as "seashells" so we could be mermaids, but, well, that didn't happen.  Probably a good thing.

Kenton came through the CT like a champ.  He's getting so good at just doing what he's told.  Wonder if that will translate to at home behavior?!

We came back to the room and Sister Gittins was here to visit.  So were Charles and Cheryl.  We had a good visit with all of them.  Good to keep Kenton's mind off of the CT and what the results might be.  He finished his maple bar and ate half of a peanut butter krispy treat.  As they were leaving, Mrs. Moser came to say hi.  Kenton loved that so much! After she left, we visited with Heidi for a while until it was time to do the dressing change on Kenton's arm.

Heidi headed home, they did the dressing change, and then the doctors came back.
The CT showed another mass of staph in Kenton's arm.  This one had walled off and would require surgery to remove.  They were talking surgery today or tomorrow.

Clearly, Kenton was very upset.
Thankfully, Mr. Cornwell and Lisa were here to visit and helped cheer him up a bit.
Kenton totally scared Lisa with the candy box.  :)
Glad to know his sense of humor is still intact.  I'm not sure Lisa was glad. . .

They left and Kenton wanted me to lay by him.  We had just settled in when the surgeon came in.  He looked at Kenton's arm, talked a super tiny bit about surgery (why won't they be more open and explain things better?!  Drives me crazy!!), asked about platelet count (it's 29 so he'll need more before surgery), and said he'd see us in the morning.

I called Luke.  Kenton wanted him to come tonight instead of tomorrow night.  He's on his way right now with McKayslin.  They'll spend the night with Nate and Rach.  So grateful for their hospitality and kindness.  Nate will come help Luke give Kenton a blessing tonight.  The priesthood has been a great comfort throughout this entire ordeal.

Kenton and I had a little rest.  I crawled out of the bed and he continued to sleep.
Nurse Cherie said that the surgery was on the schedule for 9 am.  We know that means anywhere between 8 and noon. 

After Kenton woke up, we ordered him some dinner.  Going for the Ramen again.
Luke and McKayslin should be here around 8.

We could use your prayers again.  We'd love for this to be just a tiny little speed bump in the road that Kenton can fly past and forget.
 
Prayers for strength and courage for Kenton.
Prayers for platelets to be found and transfused soon. 
Prayers for doctors' steady hands and wisdom for tomorrow.
Should have known we couldn't have his 2 week anniversary pass without some sort of drama. . .
And, that, my friends, is day 14.

2 weeks.

Still trying to figure out this new reality.
Still not a fan.

[June 27, 2012] Wednesday

Very little drama during the night.

Well, except the fact that I didn't wake up right away when he needed to go to the bathroom, and he threw "Uncle D"  (his stuffed horse) at me.  ;)

We slept very well.

Thankfully!

This morning's ANC is ZERO.

ZERO.

We are stuck here in the room until his counts start to recover.

Luckily Kenton has his iPad, his Legos, his movies, and me (lol) to keep him occupied.  Maybe I'll be the mean mom and make him do some math or something.

The only other thing going on (other than the ANC of zero and platelets in the 40s and the other low counts that are expected after chemo) is the onset of a rash that has spread over his chest, stomach, back, arms, and thighs.  The doctors are pretty sure it's a drug rash, but have no idea which drug might be causing it.  Hard to say since he's getting sooooo many every day.  They're switching out the Vancomycin for something else to see if that might be the cause.  Poor kid.  Luckily it isn't painful - just itchy sometimes.

Breakfast was a bust.

He ordered french toast and cottage cheese and apple juice.

The smell of the french toast was too strong.

He ate a couple of bites of cottage cheese, tried a bite of french toast.

Coughed really hard and threw up.

So. . .breakfast consisted of one more bite of cottage cheese and 2 cups of apple juice.

I think he might have a bit of an apple juice addiction.

At least he's getting a few calories and a bit of nutrition (although not sure how nutritious the apple juice actually is).  They're concerned about his calorie intake.

He's trying to eat more, but when the smells register so strongly that they make him gag, it's not easy.

I did talk him into eating a bite of a peanut butter rice crispy treat thing.

Today is Wednesday, which means hospital bingo day.

Kenton played bingo and blackout via tv.

His bingo prize is a super cute ostrich TY beanie.

Great - one more thing to throw at me when I don't wake up fast enough in the middle of the night.  This one will hurt much worse than the horse!

We're going to order up a super hero cape kit from the Kids' Club to work on this evening.

I think he deserves a super hero cape!

He just ordered lunch - we'll see how that goes.

On the home front, Miss M spent the day with the Madsen family.  Jess just sent me a picture of McKayslin feeding the chickens with Jess' little guy.  I'm not sure what McKayslin is loving more - being the "big sister" for the day, or spending the day with Jess!  Talked to her tonight and found out she "went to the farm and rode the 4 wheeler and tried to get some milk but it was gone, and did I know that Mrs. Madsen can drive a 4 wheeler?!  And sometimes she would go really slow and then all of a sudden go really fast and I would just giggle?!"

Yesterday she was with one of her very best friends Jelly and their family - they went grocery shopping.  It was funny how exciting that normal activity was for her.

We're so grateful for good friends that take McKayslin each day and let her just hang out and do normal family stuff. We have the medicine to treat Kenton. We are still trying to figure out the best way to help McKayslin adjust to this new reality. You don't get doctors' orders or prescriptions for that. . .

Be back later with updates about the afternoon.
I'm back.

Lunch was not a big hit either.
The mac and cheese was too salty.
It's so weird all the things that chemo changes.
Kenton had about 8 small bites.
Didn't touch his chips.
Had 2 swallows of lemonade.
And took a nap.

Tod stopped by with a sudoku book and well wishes.
Kenton's not so sure about sudoku - "looks an awful lot like math. . ."
That's my boy, lol.

He's back in bed.
Watching Chisum through half closed eyes.
He needs to rest.

Back later.
And here I am to finish off the day.
We tried to make a bracelet and failed miserably.
We'll try again tomorrow.

We didn't get to the super hero cape - that will be tomorrow also.
Along with Kenton's big plans to play a few rounds of UNO and learn how to play Phase 10 so he can play with Reygan when she comes next.  I should probably learn how to play so I can teach him. . .guess we'll learn together.
Hopefully he can have a shower tomorrow, too.

Skyped with the Boise cousins and Daddy and Goosey and Grammy and Sparky (that was funny - the poor dog was so confused trying to find Kenton and I in the house!!).
LOVING the technology that lets us SEE our family at home and talk to them!

Dinner consisted of a FULL serving of Top Ramen!
YAY!!!
Funny thing is, he said, "This is sooooo weird.  I don't even like ramen and this tastes SOOOOO GOOOOOOD!!!"  I cracked up.
Now, we are ready for bed - teeth brushed, jammies on - watching Tanked until 10.
Then it's LIGHTS OUT! And hoping for another great night of sleeping!

Nurse Erica is our nurse tonight and she is by far the quietest nurse we've had.
I didn't have to push the nurse call button a single time last night.
She caught the machines before they beeped every.single.time.
The only time I woke up when she was in here was at 4 when Kenton needed eye drops and Tylenol and was having a bit of a fit as he generally does when he gets woken up.
Compassionate, no nonsense, quiet, and to quote Kenton, "She definitely knows what she's doing!"

Of course, we also really love Nurse Tabitha (who spent countless hours monitoring Kenton's fever over the weekend and left us the sweetest cards at the end of her last shift) and Nurse Erika (who played Flipping Frogs with Kenton and the cousins and has stopped by to say hi even on days when she's in a different pod) and Nurse Kathy (BOSTON!) and Nurse Tristyn (Tristyn the Great!). . .okay - we really pretty much love them all.

Hard to believe we've been here nearly 2 weeks. . .

And that, my friends, is day 13.

[June 26, 2012] Tuesday

I guess I should start with the events of the midnight hour since technically that WAS today. . .

Around 6 last night, Kenton's nose started bleeding.  Again.

Platelets were at 6. Yes, 6.  They said they wanted to hold off on giving platelets until he was symptomatic.

3rd nosebleed of the day.

Only this one didn't stop.

I think we could call that symptomatic. . .

I'll write more about that on the Monday post.

Fast forward to midnight. . .

On hour 6 of the bleed.

At least 4 boxes of tissues used.

They'd swabbed his nose with q-tips dipped in some other nose spray designed to slow bleeding. No help there either.

Nurse Rick packed a cotton ball with Afrin and shoved it up Kenton's nose - a trick that usually works with nosebleeds.

Nope.  Not for Kenton.

It did make him throw up though.

The on call resident had been up and brought some Surgi-Seal (a wound dressing they use in the military that soaks up a LOT of blood in a quick amount of time).  Kenton's nose had been packed 3 times with that.  It was still bleeding heavily.  Running down his throat and settling in his stomach.  Each time the dressing would have to be changed, he would throw up massive amounts of blood.

He'd been given a new medicine (avacar?) that was supposed to help with the clotting.  Not working so well either.

At a little after 10, I posted this on Facebook: Kenton's nose has bled nearly non-stop since around 6. This is the third bloody nose today. Waiting on platelets. Grateful for surgi-seal. So tired. Hoping you'll remember Kenton in your prayers tonight. We could sure use another little miracle.

At a little after 11, I posted this:

At 12:15, they called in an ENT consult.  He was hesitant to look too closely because he didn't want to slow any of the clotting that he could see was happening.  He did attempt to look in Kenton's throat and was rewarded with a large amount of vomited blood and bleeding from the other nostril.  Gee, thanks for the help.  ;)

His recommendation was to pinch the nose (again!) for 20 solid minutes with the surgi-seal in place and a guaze pad held under Kenton's nose.  At this point, both Kenton and I were dozing off, so I snuggled in bed with him, held him, and pinched his nose as tightly as I could for 20 minutes.  At the end of 20 minutes (it's now 12:40 am!!!), the bleeding had slowed dramatically and they had begun transfusing another unit of packed red cells.

Kenton and I snuggled down and went to sleep, grateful for the prayers of family and friends that certainly were the driving force behind the decrease in bleeding, praying that the platelets would be delivered soon.

I woke a little after 1 to hear the nurses verifying the platelets and beginning transfusion. 

I *think* I rolled over and said, "YAY!  The magic juice is here!"  But hopefully I'm wrong about that, because, really?! Ha, ha.

I'm not sure what happened between then and 2:30 because I was SOUND asleep.  At 2:30, Kenton had to go to the bathroom really bad (lots of blood in his tummy and feeling yucky).  I helped him with that and then put him back to bed.  He was literally asleep before I tucked him in.

I made my bed on the couch and went to sleep.  Sometime in the night he was up to go to the bathroom again, and they gave him the last dose of chemo for this round, another unit of blood, and another unit of platelets.  This morning he woke up around 6 to go to the bathroom, then snuggled right back into bed and slept till nearly 8.  At 8, our new nurse (Nurse Kim) came in, did vitals, started the other medicines, removed the surgi-seal (no bleeding, yay!!), left, drew our blinds, and hung a "do not disturb unless necessary" sign on the door.  I crawled back into my bed on the couch and Kenton snuggled into his bed sound asleep again.  We slept till 9:30!

I finally made my way to the shower, helped Kenton go to the bathroom, ordered him some breakfast (it's Tuesday - Blueberry Pancake/Buttermilk Syrup day!!!), and took care of some paperwork - kind of funny because they brought up a form that had to be filled out for consent to treat Kenton.  He asked, "Then exactly WHAT have they been doing for the past 12 days?!"  LOL. 

Bonnie, the parent coordinator, heard about his night and stopped by with an awesome Lego set (which we'll have to work on tomorrow because we slept the whole day long!).

Dr. Barnette came in and talked to us for a while - he's raising Kenton's platelet threshold into the 20s so that he will receive platelets sooner than normal based on his bleeding issues.  I'm so grateful for that!

Around 11, he was sound asleep again.  He slept, waking only once for a bathroom break, until nearly 4.  At one point he asked me to come lay by him, so we snuggled in his bed and slept for a good three hours.  Sleep feels so good!

This afternoon he had a few visitors (Holli, Brandon, and Kory stopped by after Kory's orthopedic appointment, and Reygan drove down after work).  It was a nice relaxing day.  Kenton was able to sit in the chair for a while and play on his iPad.  He had another rest after Reygan left.  Ate some brownie for dinner.  Sat in the chair again.  Went back to his bed.  Skyped Luke and Goose and Grammy.

Had his new set of vitals and meds, and is back in bed watching Chisum.  Dr. Rawlings stopped by with a "stress" football - one of those little squishy ones that you can squeeze when you're feeling angry.  Kenton and I played catch for a few minutes.  He's getting pretty good at throwing and catching with his left hand!

Nurse Erica just came in to do a flush, then it will be Benedryl and Tylenol followed by Vancomycin (sp?).  I'm heading off to get ready for bed.  Movie and lights off at 10 (maybe earlier if I can talk Kenton into it, he's over there falling asleep!).

Hopefully he'll sleep well tonight after sleeping all day!!  I'm hoping for a relaxing wonderful night of sleep.

And that, my friends, is Day 12.

[June 14, 2012] Thursday

This morning I woke Kenton up about 5:30 to get him ready to go help the scouts put flags up for flag day.  He was downstairs getting dressed while I heated him up a breakfast sandwich.  He came upstairs and said that he had a headache.  I told him I'd get him an Aleve to take with his breakfast.  I turned to the microwave to get his breakfast out and when I turned back around, he was throwing up in the garbage can.  He threw up a lot.

 

I sent Katie a text telling her not to come get Kenton because he was sick.

Sent Luke a text saying that we should probably take Kenton back to the doctor that afternoon because he had a fever again (he'd had them off and on all week) and the lump in his armpit wasn't going away (it had been there for a little over a week, but we figured it was part of the staph infection that he was already being treated for).

I had math class that day.  McKayslin had gymnastics.

I fixed Kenton some toast, gave him some Pepsi, had him take an Aleve for his fever and his antibiotic for the staph infection, made sure he was comfortable with blankets and pillows and the remote, and McKayslin and I headed off to math class.

 

During math class Kenton sent me a few different texts that his head hurt or that he was really hot. Luke came and picked McKayslin up for gymnastics and then brought her back to class. After class I stopped to get the kids some tomato macaroni soup at Juniper Take Out.  The kids ate their soup and watched tv.  I fell asleep on the couch.  Around 2:30 Luke sent a text saying he was done with work.

 

We decided to just meet at the clinic so that we could figure out what was going on with Kenton.  Dr. Morgan looked at Kenton's armpit and sent us immediately to the ER (our first tiny miracle).  He'd called ahead so they were ready for us to arrive. 4:13 pm.

 

At the ER we had a very capable and kind doctor (another tiny miracle) that for some reason ordered a blood work-up (miracle number 3) even though they had already determined that they were going to treat the mass in Kenton's armpit as staph and had called in a dermatologist to check the healing sores on his sides.

 

Luke and McKayslin had gone home.

I sent a text saying that they had a treatment plan and would let them know what was happening further as I knew.

 

Kenton had an ultrasound on his armpit.

The dermatologist and the dr. were in the room explaining what the treatment plan would be when the nurse walked in with the results from the blood work-up.

 

The next few minutes are frozen in my mind.

"I think you'd better look at this. . ." as she hands a paper to the doctor and the dermatologist.   

"Well, this changes everything. . ." as the doctors look at each other.

And then the moment that my world stopped turning and my heart shattered into a million tiny pieces. . ."His white count is 196. . .I'm going to go call Primary Children's. . .you'll most likely be admitted tonight. . .it's probably leukemia." 4:24 pm.

At that moment in time, we became part of a club that we didn't want to be in.  A club where they kill off all of your child's cells in order to kill of the bad ones.  A club where words like transfusion, and platelets, and chemotherapy are commonplace.  Understood.  Tolerated.  Prayed for with gratitude.  The Leukemia Club.  The you have a kid with cancer good luck figuring out how to make life work for your family now club.

Within an hour, Luke and McKayslin had been brought back to the hospital by President Acevedo.  A blessing had been given to Kenton promising strength and recovery.  An ambulance was en route to pick Kenton up and deliver him to PCMC.  And he was going to have to go alone.  We could follow him down in the car (which needed gas) but we had no clothes, no necessities, nothing ready.  How do you get ready for something like this?  6:34 pm.

And then, our next miracle occurred - the ambulance arrived (6:45 pm) and they asked if I was going to ride down with Kenton.  What?!  That's not policy anymore!  Tonight it was allowed.  Encouraged even. 

 

We gave hugs all around.  6:47 pm.

I really think this was harder on McKayslin than anyone else.
Her big brother, her protector, her hero was sick.

And no one could tell her that he was going to be better the next day.

There's nothing worse than seeing both of your children hurting and not being able to help either of them.  :(

 

President Acevedo left to call Grammy and alert ward members, Luke and McKayslin left to go home and pack, and Kenton and I headed toward PCMC in an ambulance.

Photo taken heading up 4th south at 8:05 pm.

By 8:20 we had arrived and been escorted right to the 4th floor.  ICS.

Cousin Drew had called to find out what we needed.

Cousin Jared was here within 10 minutes of us entering the room.

He's the one that held me together when the doctors were rapid firing words like leukemia, chemotherapy, treatment, inclusion, picc line, spinal tap, bone marrow aspirate at me.  It was crazy.

Luke and McKayslin arrived around 10.  Cousin Drew was here by then, too.

The doctors told Kenton he'd have surgery tomorrow.

It was for sure leukemia.  They had to find out what kind.  And then we'd discuss treatment options.  He was soooo hungry.  Hadn't eaten since lunchtime.

Cousin Jared went to Crown Burger and brought back a cheeseburger, fries, and a chocolate shake.  10:34 pm.

Best smile I'd seen out of Kenton all day!

The "bouncers" left, Luke and McKayslin followed Drew to Nate's house to sleep.

 

There aren't even words to describe how grateful we are for President Acevedo dropping everything to help us in the middle of the afternoon (even if he did try to steal the consecrated oil from Logan Regional, lol).  And how thankful and blessed we are to have such amazing cousins that instantly came to help during such a difficult time and who opened their homes to us so Luke and McKayslin would have a place to sleep and cousins to play with when they came to stay.

 

Kenton and I tried to settle in for the night.

All went well until he woke up around 2 am and threw up again.

He had a fever.

He was scared.

I was scared.

It was a pretty miserable night. . .

And, that, my friends, is day 1.

A day I wish I could forget, but know that I will always remember.