Friday, August 31, 2012

4 Things I'm Not Proud of and 1 That I Am

I asked Sam how he wanted today's schedule to look.

Sam: is it 11?

Me: no, it's only 10:20am.
*note: teach kid to read a clock

Sam: can you go get me a biscuit at McDonald's?

Thing I'm Not Proud Of #1: my kid knows what time breakfast ends at McDonald's.

Thing I'm Not Proud Of #2: my kid's favorite food is a biscuit with egg and cheese.

So I went. To the nearest McDonald's.

Thing I'm Not Proud Of #3: I know where the nearest McDonald's is.

In the drive thru, they told me that actually, on weekdays, breakfast ends at 10:30. I look at my car clock. 10:42. Seriously!?

Thing I'm Not Proud Of #4: I went inside and I played the cancer card.

Yep. "Please. My kid has leukemia. He wants a biscuit. Can you help me out?"

I did. I totally went there.

Yeah. I'm so not proud.

But this. THIS I am proud of:

Thursday, August 30, 2012

Settling in....Chemo Round 3, Day 2

We spent the day re-acquainting ourselves with hospital routines.

Eye drops.
Water cups labelled to keep track of how many are consumed.
Nudging to eat.
Timing and scheduling activities to keep ourselves busy but also restful.

A pretty level, mellow day for Sam. We spent time doing homework, and playing DragonVale & DrawSomething. There were many books read, and a lot of apples eaten. Zeyde explained many baseball references to Sam while they watched Angels in the Outfield together. (And um, explained what a foster parent is. Oy vey.)
The nurses have to stay in the room for about 15 minutes when administering one of the chemos. I put them to work. I mean, I give Sam a new audience.
Note: For the last TWO months I have been ordering whole apples from the food service and trying to cut them with the disposable plastic knives, since he likes sliced apples. Only in the last week did I discover that they have PRE-sliced apples (in those little baggies like you get at the Scottish Restaurant) and DUH! How much easier life has become. I also got a canister of cinnamon, which Sam likes on his apples, and now he can sprinkle his own. Voila...independence. Plus, no more hacking away with those silly little knives. Who knew!? Today he ate four packages of apples. Oy. It's almost like the Great Plum Day of Round 1.

The day was pretty mellow until a weird temper tantrum/meltdown right around bedtime. Which dissolved into some "I just want to go home" wails....oh, yes, Sam, I just want to go home too.

It's wearing, for sure. The back and forth and the nurses and the ordering snacks and the drinking water and the peeing in a jug and the lack of privacy and the medicines and the hand washing and the mouthwashing and the eye dropping and the bed sitting and the couch sitting and the chair sitting and the lap counting and the visiting and the reading and the watching and the playing and the BEING in the's all wearing on us. The "fun" things are not as fun. Because we've done them. Again. So we read new books and tell new stories and watch new movies and sing new songs and write new journal entries and make new videos and play new games and find new ways to amuse the little patient who is less and less patient....but still makes fart jokes and asks innumerable questions and looks for mail and visitors and messages and waits for his dragon eggs to hatch and for friends to "draw him back" and FaceTimes and watches the videos of Solly playing with HexBugs or of his awesome teacher and classmates eating bananas ...and gamely tries all the crazy ideas that his mom comes up with.

Nothing that a bag of microwave popcorn and a half hour of the Smurfs before bed couldn't fix...for now.

And so we rest. The healing-yet-first-hurting medicines come in the middle of the night, too....but they are super-stealthy uber-quiet ninjas like we ask them to be and we barely notice any more. So the night beckons and Sam sleeps...and tomorrow is another day. And we're only at the beginning. We'll settle in. Before we know it....we will go home. Right?

Wednesday, August 29, 2012

We're baaaack....

Are you one of those people who reads ahead?
Do you skip to the end of the book so you know what's coming?
Did you know Aly Raisman was going to win the gold medal before the tape-delayed coverage?

Usually, I like to know what's coming. If the info is there, I want to have it.
(But I don't read the last page of novels. That's not me.)

In terms of chemo, I did NOT read ahead.

Someone asked me how many days of actual chemotherapy there would be this round and I had to say that I didn't know. Until today.

The good news? It is only five actual days of chemotherapy.


The bad news? It's called "Intensification Round" for a reason. It's five days of high dose cyterabine combined with etopicide. A fun cocktail. (By the way, I'm starting a new game called "chemo autocorrect." cyterabine autocorrects to "cute ravine" on the iPhone. I like that better.)

High dose cyterabine causes conjunctivitis. So every six hours, for six days (all the days of the chemo plus 24 more hours), they will put eyedrops into Sam's eyes. For those of you who are calculating, yes, that is at 8pm, 2am, 8am, and 2pm. Are we having fun yet?

He's handling it like a champ. So far we've had two doses. He's not excited about the idea of being woken up for it at 2am. But I'm hoping/expecting/praying that he just goes right back to sleep.

We'll see.

Some of today in pictures:

Sam played Draw does he know what DNA is?
Showing off today's free-app-of-the-day that is controlled by your voice. Caused endless amusement not only for Sam but for his nurses, who see this as excellent lung therapy. (In case you're wondering, it's called Scream-n-Run...friendly zombies trying to avoid evil bunnies...)
 Some serious chemo...started down in the clinic while we waited for our room!
 Sam took a long those wrinkly fingers?!
 A little eyedrop insertion is always fun, right?
 The whole floor is still on isolation but because we no longer have C.Diff, Sam can leave the room wearing gown and gloves. We decided that wasn't good enough and added a second gown as a cape and a mask...oh, and swords. That's just how we roll.
So we're back. Sam's spinal headache finally seems to be gone (another dose of caffeine this morning helped) and while the chemo has already caused quite a bit of nausea, he seems pretty okay with being back in the hospital. The routines are mostly familiar, the people are certainly familiar, and the surroundings? Well, we landed right back in room 582, so it doesn't get more familiar than that!

There's the new element of working on schoolwork, so we'll see how that goes tomorrow!

Sam loves all the mail that he's been getting, so if you've been holding onto some superhero pictures and waiting to send them, now is the time. Thank you to everyone who has sent lots of love so far!!!

Sam Sommer, E582
Children's Hospital of Wisconsin
P.O. Box 1997
Milwaukee, Wisconsin 53201-1997

From my spot on the couch in room E582, to all of you out there, thank you for the love and prayers. Sam and our whole family know that you are caring for us in body and spirit. To everyone who is bringing meals to our house - we thank you from the bottom of our hearts. It is truly the most incredible blessing to have these simple needs cared for. We are beyond blessed to have so many people who have helped or offered to help with everything - thank you. For everything, I cannot even begin to enumerate all that you all are doing...thank you.

Thank you.

Tuesday, August 28, 2012

Marking Milestones

Losing a tooth is a big milestone, right?

No matter how you come down on the whole tooth fairy issue, it's pretty exciting. It's a status symbol, a sign of growing up! It's a very clear sign of new growth.

Unless you have leukemia.

Then it makes everyone a little nervous.

Sam had a very loose tooth.

It caused everyone a little stress. Every time he went for a procedure, they would ask if there were any loose teeth. The nurses didn't want his hands in his mouth, wiggling it. There was concern about bleeding. Infection.

Last night, about midnight, Sam woke up with a huge smile and a tooth in his hand.

And, um, a bloody hole in his mouth. Not in the British sense.
I mean for real.

Ew. But darn if he isn't the cutest little thing.
P.S. Yael's response? When do *I* get to lose a tooth!? (As though I have control of these things.)
So he rinsed and rinsed and rinsed. And then he went back to bed.
(In case you're interested, the Tooth Fairy DOES know where Bubbie and Zeyde live. And their Tooth Fairy is a Big Macher!)

But...his platelets are good.
His ANC is good.
So we're not overly worried.

Oh...and um...just by the way...
his bone marrow results are Free. Of. Leukemia.

YEP. You read that right.
{{{big deep sigh of relief}}}
Two rounds done.
Two to go.
We can do this, right?
One little milestone at a time.

Catch ya tomorrow from Camp Chemo.

Monday, August 27, 2012

Short Stay by the Numbers

in the ER, resting was all a little blurry
Our stay at the hospital by the numbers...sorta:
23 people who said, "oh, you're back already?!" but with a big welcome-back smile
2 viewings of The Smurfs Movie
(multiple giggles by the mama.)
47 viewings of the Progressive Insurance commercial on Nick (why do they advertise alongside toys? I'll never know.)
15 times I explained what car insurance is for.
2 Berenstain Bears books read
1 new app downloaded to the iPad

4 bags of fluids
1 bag of caffeine
3 members of the "Pain Team" visited us. 2 were somewhat useless. 1 told us what-the-what was.
(Can you imagine? Team Pain? They sound like evil villains, don't they? They should be called the Anti-Pain Team. I'm just sayin'.)
87 times Sam told me he was hungry, when the Pain Team initially told him he couldn't eat, in case he had to have some kind of procedure. Which it turned out he was ineligible for anyway.
1 very irritated mama
1 Dipps granola bar consumed as soon as that restriction was lifted
1 bowl of yogurt-and-rice-krispies eaten
1 less irritated mama

8 doses of Zofran
8 doses of pain meds
1 vanco-heparin flush
1 capped off IV line
1 day chemo pushed back
2200 = Sam's ANC
1 happy camper to leave the hospital

Sam's headache was "cured" by laying flat, having lots of fluids run, and probably helped by that bag of IV caffeine. I'm trying to get some of that IV caffeine for me....until then I will have to make do with Starbucks.

They released us but they were a little wary about a car ride of an hour and fifteen minutes. So I suggested that we drive only as far as my parents' house, which is about 25 minutes from the hospital. That satisfied both the doctors and Sam, who put in an order for mac and cheese AND a grilled cheese. (I had grilled fish and a baked potato.)

So we're settled in here.

More numbers:
2 bowls of mac and cheese eaten
1/4 of the grilled cheese eaten
1 dose of Zofran administered by mouth
1 viewing of Gnomeo and Juliet
1/2 bowl of popcorn eaten
1 bowl of mac and cheese ("It's dessert, mom!") eaten after the popcorn
Multiple episodes of the Fairly Odd Parents
2 doting grandparents letting Sam have the run of the place
1 laptop for me to use to write this blog post! 

I'm not even going to tell you that I have a plan because it is silly to have a I have some ideas about the next few days.

Either way, we'll have a scheduled readmission on Wednesday.

Hopefully I will have something nice to report about tomorrow!

Thanks to everyone who offered to help - we so appreciate and love you!
Thanks for all your prayers and good thoughts. They mean so much to us.
We are so truly blessed.

Sunday, August 26, 2012

Plans....not quite

Friday morning we headed into the hospital for an echocardiogram and an EKG. Sam was not a happy camper, since he was no-food-no-water-no-nothing since the night before. He did pretty well through the whole thing. I do wish the people in the heart clinic had been a little more empathetic to his situation. They didn't quite seem to get it.

Then we headed over to "our" clinic for the rest of the day's activities.

Last time Sam had a bone marrow biopsy and lumbar puncture, he woke up badly from the anesthesia and had, two days later, a terrible spinal headache. The staff told me to make sure to remind them of these things when we arrived, and so I did.

So we gave Sam a large bag of fluids before the procedure, morphine before they woke him up, and a cup of Coke (caffeine helps, they said) with his post-procedure meal (French toast sticks, if you were wondering.)

It all went really smoothly. Sam was a trooper. He woke up well, ate, was in good spirits. He complained of some back stiffness, but came home well.

Then his pain and headache started, along with some vomiting. We've been monitoring it, we've been giving him pain meds and anti-nausea meds. I just feel so horrible that he is miserable. I'm sure if we were inpatient, they would be able to give him even more and probably help alleviate all of his symptoms. (I spent a lot of time on the phone with our phenomenal nurses at CHW)

But tonight, he was laying on the couch, after a whole day of pain and discomfort, and watching David act silly. And he was laughing.

Out loud.

And I realized that home might a pretty good dose of healing medicine.


My poor baby.

But late Saturday, all that healing laughter wasn't quite enough and we headed over to the Highland Park Hospital for some fluids and IV meds. It was a little weird being in the same ER room in which we started back in June. But they sent us home and all was somewhat well. Sam slept through the night.

When he woke up in the morning vomiting from the pain we called CHW again and they asked us to come here...and here we are. We spent most of the day in the ER after a really rough ride up here (poor baby) and the staff let Sam call some of the shots. He really wanted to go home so we stayed in the ER probably longer than we needed before finally bring admitted. Will we stay now through the chemo start? Not clear. We shall wait and see.

Upside? The nurses totally knew how much we loved our east-facing room and made sure we got another one. Now that's love.

While we are so bummed to be here, it is comforting to know that pain and nausea meds come by IV here. Whew. We didn't bring all of our stuff but it's ready to go at home...maybe a day pass will spring us for a tiny bit before chemo starts...or who knows. Until then, we hunker down and wait for the pain and nausea (most likely from the spinal tap but also could be from the spinal chemo) to pass....

(and I don't have my laptop so blogging will be a little weird.)

More tomorrow when we know more. For now...all is calm.

Thursday, August 23, 2012

Back to School!!!

Kids go to school. Okay, there are many homeschool people out there. But my kids go to school.

It's what they do.
It's their "job," we tell them.
It's normal in our lives.

I sometimes find myself saying the weirdest things.
"I'm glad this happened over the summer," I said the other day.
(I'm glad!? Seriously!? But yes.)
I didn't have to think about school as we began - I had a few months to consider and see how it would all work out. A grace period.

So here we are. In between rounds 2 & 3 - with school starting. So I had a few meetings, I had to deal with it!

We have the most incredible school.
I know people love their schools -- but ours is truly amazing.
Sam is part of a Dual-Language program; he learns Spanish and English together. That's not why the school is incredible (although it adds to the awesomeness). Our principal has created an environment that is welcoming, honoring, and truly special. Kids and families are treated with value and respect. I knew that my school would embrace and help our family - and I was not wrong.

I had a few moments of thinking to myself, "Well, maybe we don't want to make a big deal of this. Maybe it's too hard to explain to his classmates and we should just be quiet about it."

And then our principal set me straight. Mrs. Anderson said to me, "if your kid was in class with another student who had leukemia (or any other serious issue), wouldn't you want to have your kid learn how to be a part of their life? And wouldn't you value that lesson for your family?"

See what I mean? She is so wise.

So we set in motion a project that I found online. It's called Monkey in My Chair, and it is a not-for-profit that provides a full social-emotional curriculum to use with the classmates of a student with cancer that requires them to be away from the classroom for extended periods of time. Oh, and it revolves around a stuffed monkey. What could be bad?

On Wednesday, Sam met with his teacher and the school psychologist (along the principal and the nurse and a few extra staff members who waved as they walked by). Sam was so excited to bring his big monkey (named George, he said) to sit in his chair in the classroom and eventually hang in his locker, since he would attend on the first day. He played a math game and got to explore his classroom a little on his own.

Can you see the monkey in his chair in the background? That's Sam's seat.
Sam has always been a great storyteller and speaker, but his maturity has really grown in the last few weeks. All that time spent with adults, I think, has had a real impact on him. He spoke eloquently and interestingly to the staff members.

Showing off the monkey in his locker...
Finally, the first day of school arrived today.
Full disclosure - I love the first day of school. I get emotional no matter what is going on in our lives. I love the potential, the newness, the unknown delights that are yet to be learned in the classroom. I love the new backpacks and the sharpened pencils. I love the ritual of reuniting with friends, making new ones, and meeting the teachers.

So you can imagine that I was a little overwrought today.

Not so for Sam, who was totally a cool cucumber about it. David, too.
Don't we have fine footwear in the Sommer family?
The psychologist, teacher, and school nurse began in the classroom while Sam and I hovered outside. They discussed why a monkey would be in their classroom, and they dressed it in a school t-shirt. I watched as the kids all wiped their hands with antibacterial wipes (yay) and then Sam and I came into the classroom and read the Monkey in My Chair book to the class. Then....first grade began!

Then Sam looked at me and said, "Bye, Mom."


So I left...well, I stayed around the building just in case. And to help when Yael arrived for her afternoon shift. (Which was in the morning on this half-day of school. Don't ask.)
Not to be outdone, Yael began afternoon kindergarten (which is why she isn't in the above pics) with equally awesome footwear.
And just like that...we have school.

So now I have to work out whatever logistics come with lengthy absences. But I'm not worried. My most concern was that Sam feel a connection and not feel too left out. I think that the monkey business (ha ha) will help him a lot. And we have some Skype dates to be planned with teachers who are incredibly receptive and loving and warm and caring and awesome.

A few other nods to "normalcy" at home:
Sam had a piano lesson from the amazing Miss Tina.
And yes, I know this blog is about Sam, but a first piano lesson EVER is worthy of a mention here!
Some monkey business at the park
An early morning park picnic
Medical Update:
We did NOT have a biopsy on Tuesday, instead it was postponed to tomorrow - Friday.
The monkey will be in his chair.
Sam is having an EKG and an echocardiogram (chemo can be bad for your heart so they monitor it) as well as bone biopsy and lumbar puncture tomorrow at the hospital.
Then it's home for the weekend, back to school on Monday (monkey to the locker!) and then probably admitted for Round 3 of Chemo Camp on Tuesday. Stay tuned for details.

Tuesday, August 21, 2012

Strike a Pose

He's enjoying home life.
Stay tuned for school pics.
Who knew (somewhat) normal could be so nice?

Monday, August 20, 2012

Saturday, August 18, 2012

Half-Way There

All day on Friday, I was in state of epic anticipation.

It was palpable. Every staff member would mention it. "I hear you might go home tomorrow!"

And I was trying not to get Sam's hopes up.

It was a lost cause for my own. They were TOTALLY up.

I took everything down off the walls.
I packed things up.
I made plans for more packing.
I had Anne drop off some luggage on her way through town.

And I breathed.
All. Day. Long.

Luckily, we had a few visitors to distract us.

Sam's kindergarten teacher came to visit and it was awesome. Sam was so excited to see her - he has been asking about her all visit all week long.

He told her the whole story of Harry Potter. She listened in that awesome patient-kindergarten-teacher way.
 And one of my lifelong friends, Jennie, came with her son Lex. (When I told Sam that Jennie and I were in first grade together, I don't think that he actually believed that once upon a time I was a first grader...but I digress.)

Before bed, I asked Sam, "are you looking forward to going home?"
Sam: "Yes. But I'm going to miss some people here."
Me: "Really!?"
And he listed a few of his favorite staff members. I was totally blown away.

Locked in the same room for 14 days (that's how long our isolation ended up being), in the hospital for 25, and he had created relationships that he would miss. It sounds so strange to say this, but I'm so glad that he has found friendship here. That he feels loved here. Not just by those of us who knew him "before." But by the people who are helping to make him better. I firmly believe that my children can never have too many people to love them. I'm so glad that Sam has this new circle of strength to add to the ones he already has. 

And then I was up all night.
Every time a staff member came in, I briefly woke up. Is it time for the lab results?
No, it's only 2am. Or 5am. Or....

Finally the resident came in. Without the results.
I almost lost my mind.
Finally at about 8:30am, she came back.


He did it.
I almost leaped out of my skin.
I nearly hugged the doctor.
(Turns out, his labs were actually the last to come back today. One of the docs told me that it was the first one she had checked and it was the last. to. come. back. Oy!)

Sam was still asleep.
"We won't wake him," the doctor said.


Five minutes later....he was dancing the going-home dance.

Such a cool cat.
Nurse L. (and her trainee) changing Sam's dressing before we went home.
One dressing change and a whole bunch of other hospital details later, including a stop at the Ronald McDonald House to check ourselves out, a lunch stop, and we were on our way.

A serious discussion with Karen, who helped us move our stuff home
It's where we want to be.
I thought Sam would roll around in the grass like a newly-freed puppy, he was so happy to be here.

And so, we are half-way there. Two rounds down.
Can it really be half-way over? I keep holding my breath. I haven't quite let it out yet.

So good.

Knowing you are all out there? It helps us all so much.
We are so very blessed.

Quick medical stuff:

Tentative schedule...
Monday - blood draw. This will tell us if he is ready for the bone marrow biopsy.
Tuesdsay - scheduled bone marrow biopsy and lumbar puncture. It was so lovely to not have this procedure at the beginning of our last admission and the doctors agreed that outpatient was best.
Thursday - the First Day of School. Assuming all counts are good, all things go well on Tuesday, Sam is feeling up to it....he will go. No lie, my hopes are totally on this one.
Friday - Admission for Round 3.

Things don't always go as planned.

But for now...we drink from the cup of measured joy.

Prepping the home front!

How excited are we that Sam's ANC hit 140! The room is being packed and we are prepping for his homecoming with momma (I'm not saying some serious cleaning is going on, but I'm not not saying it either).
Yeah! Life is good! What a sabbath blessing for our entire family and world of supporters. Prayers and love clearly work wonders.

Thursday, August 16, 2012

Are we there yet?

So remember how I said yesterday that I wasn't getting my hopes up?

I lied.

They're totally up.

And even though I haven't really said anything to Sam about home-going, he can feel it. It's starting to be wearing.

This morning, for what was one of the first times this whole round, he fussed and grumped and cried and said "I want to go home" in that angry-frustrated-I've-had-enough-of-this voice as he dragged his IV pole to the bathroom before his morning un-hook.

So we had a slow start to the morning. I sat on my couch, looked out at the rain, and let him settle took a little iPad time, a few extra grumpy comments that I cheerfully ignored, and finally I played one of those classic Mom Cards.

"Hey, Sam, can I try that Wii game that you keep doing? Will you show me how?"

Grumpy Sam: "If you want to play Wii, you can do it yourself. You don't need me."

This was not the answer I expected but I rolled with it, set up the Wii Fit board, and got started.

Before I was even logged in, he said "Okay, now it's my turn."

A-ha! Sneaky mom trick SUCCESS!

And it was all good from there.

Carson, Abagael and Jen came to visit. We played helicopter, Wii, and Hidden in Plain Sight (also known as Run Around The Room Like Crazy People.)

Eating, drinking, moving, playing....that was our day. Including a nice long bath. "Just to play, not to wash, Mom." Gotcha, Sam. And there was a glow-stick battle with the doctor. In the dark. And they looked like light sabers. Which was totally awesome.

I might have started to pack some things up and send them home with visitors.
I might have started to imagine that our first-day-of-school pictures will have FOUR children in them. (Even if Sam can't go to school, he can take pictures.)
I might have started to get my hopes up.

It's funny, in the first round, I think we never actually believed that we would ever go home. I mean, they told us that we would and we counted the days religiously, but we couldn't envision it. Now it's all we can think about. We can totally envision it. We can practically feel it and taste it. And every time Sam talks about going home, I can honestly say, "soon, sweetie, soon..."


There was a lot of response to my Doctor-Speak in the last post, and I'm also here to report that I read the opening and closing parts (the Doctor-Speak and the Translation) to our resident and she laughed...we tried to decide what would happen if she opened her rounds tomorrow with "this kid has been here an ungodly amount of time and we can't wait to get rid of him" but decided that might not be in the best interests of her career....

And for the interested medical people, the "blah blah antibiotic" is something called cefepine. If that's how you spell it. I was hoping no one would notice the blah blah part.

So our numbers are rising, in that frustratingly slow way that they do...we're off the TPN and Lipids (that's nutrition by IV) since he's eating and not losing weight. Aside from a few maintenance meds that will all end with rising counts....we're ready.

Are we there yet?

Wednesday, August 15, 2012


"Sam is a 6 and a half year old boy on day 22 of induction round 2 for AML. He is currently awaiting counts recovery. From a HOT perspective, he is awaiting count recovery. From an ID perspective, he is afebrile and on blah blah antibiotics. He is on day 12 of oral flagyl for C.Diff. From a GI perspective he is on TPN and Lipids, adjusted for his PO intake. He is on Zofran and Hydroxizine PRN. From a neuro standpoint he has morphine available but hasn't made use of it so let's take that out."*

This is an almost word-for-word report from the resident every. single. morning.

Today, a small change.

An ANC of 15.

It's not much.
But it's there.

A "rising count" as it were.

I just took a moment to read through our last chemo round's posts. I didn't record what the "low" ANC was on July 5, but I read through the posts and FIVE DAYS LATER we went home. (In case you've forgotten (why would you remember?) we are aiming for about 200 before we can go home.)

I am NOT getting my hopes up.
I am not GETTING my hopes up.
I am not getting my HOPES up.
I am not getting my hopes UP.

Just a teensy little bit.
Let me celebrate, okay? We did a little ANC dance this morning, me and Dr. L.

I know that the subsequent rounds of chemo often take longer for recovery. So did I mention that I'm NOT getting my hopes up? But I am thinking about packing. I'm just sayin'...


Today was another "good" day in Sam's estimation. Not only did David visit again (he stayed overnight with Bubbie and Zeyde), but Grandma came to pick him up and brought Yael. All three big sibs in one room. Ahhh....there actually was a little bit of "normal" in there, if you can imagine.

And when they left? Sam handled it in a much better fashion than yesterday. That famous kid-resilience? Definitely showing through. He bounced back from the disappointment and slipped back into his routine of sword-fighting and wii-playing against nurses and residents and other helpers. (Including me, but he said that I was too "boring" because I don't like to get hit. Duh.) A remote-control helicopter didn't hurt either.
Learning to land the remote control helicopter while Bubbie and Dr. L look on.
This is A, our "care partner," which is a fancy word for nurse's assistant. He played a mean wakeboarding on Wii. (He also wakeboards in real life on Lac LaBelle, which was a big deal for Sam and I - that's the OSRUI lake!)
His sparkly and snarky comments continued all afternoon and into the evening, when Tante Anne arrived with a Lou Malnati's pizza. Oh how Sam has longed for some local Chicago cuisine. Seriously, it makes me (ever so slightly) regret that my children are attached to their local restaurants and stores. Why can't he yearn for a cookie-cutter-chain-restaurant item that is easily acquirable in another state!? Darn kids and their high-falutin tastes.

 And then another bounce. Sam and I got a little cocky...he offered to take his evening meds with water instead of Sprite to avoid an extra mouthwash after the Sprite....and back it all came up. Lou's pizza and all. Sigh. There was definitely a parenting moment of "oy, I shouldn't have let him..." but in the end, it just was what it was, and I think we both learned a lesson. He handled it well, bounced back, re-brushed his teeth, re-took the dose (with Sprite) and after a last few chapters of Mercy Watson, headed off to bed.

Bouncing boy....bouncing mama....bouncing day. Ups and downs....but so many more ups than downs. And for that we are grateful.

Here's hoping for even higher numbers tomorrow!

*Translation: This kid is here for his second round of chemo. He's been here an ungodly long time and we can't wait to get rid of him. He doesn't have fevers or infections except the darn C.Diff and he takes medicines cuz it's fun. He's not eating very much so we give him nutrition by IV and he can ask for his nausea meds. He doesn't have any pain, whew. (Did I get it right, doctor-types?)

I'm trying to add "Doctor" or "Leukemia" to the languages that I speak on my Facebook profile but it won't let me. Probably because it knows that I don't really know anything...but I play one on the internet!?

Tuesday, August 14, 2012

Highs and Lows

When Sam went to bed tonight, I asked him (as I usually do), "was today a good day?"

And he answered, "yes."

So I asked, "what was the best part?"

And he said, "David."

Then he rolled over and went to sleep.

Ah, I wish it were that simple.

It WAS a good day, all in all.

Sure, his counts are down...he's no longer on round-the-clock nausea meds, but he has to ask for them instead. He's eating a little more. The C.Diff is under control but we're still in isolation and taking antibiotics.

David came today. Sam was so happy to have him here.

It's so interesting to watch them together - there was a lot of chatting and showing and telling and doing, but there was also a lot of sitting together, playing separately on video games or watching a movie together. Side-by-side, but not interacting every moment. But for Sam....he was just drinking in being in David's presence. Sharing the same air. Having him around and being able to show him all the things about which he has been saying "I can't wait to show that to David!" Big brother adoration is an amazing thing. And for all David's too-cool-for-little-brother-stuff bluster...he was pretty adoring of Sam, too. It was sweet and wonderful.
Picnic lunch
Randi read one of Sam's favorites - the Berenstain Bears
(Frankly, I'd rather hear them complaining about chores and who has to do which part of the dishwasher and "he got more cookies" and "let me go first" and "leave me alone"....because it would be normal...but I'll be quiet now and just revel in the love today, right?)

Then David left.
And Sam came down.
From the Cloud 9,999 that he was on.

Back to the reality of room E582. Without his family. (well, except me. But according to him, at that moment, I just didn't count.)

Poor guy. I was so sad. Because I knew that there was nothing I could do to help him "fix" this problem. So we watched some television and sat in glum silence....even a visit from a favorite staff member didn't help. Okay, maybe it helped a little. There was a glimmer of a smile.
A little moping resting
And then slowly, equilibrium returned.

I suggested a bath, and I let him stay in there until he turned quite pruney...even added more warm water. My little fish swam round and round the small tub, making silly faces and telling stories about sharks and turtles. We dreamed together about swimming with the dolphins in Hawaii and visiting the turtles on the Galapagos Islands.

And I took a big deep breath and let it out slowly....with a burst of energy, a few sword-fights and some paper-folding and some coloring....
Playing "Plants vs. Zombies" on my laptop. The cool folks at PopCap games joined Team Superman Sam today - awesome pics of their staff and a few cool stuffed plants that fight zombies (if you like this game, you'll know what that means). Sam wanted to see if the PC version of the game was the same as the iPhone version. It is. Except we were able to make our own zombie. All of this added to Sam's perk-up, you know.
Wearing the fencing helmet of Samantha Roberts, Team USA Fencer and 2016 Olympic hopeful!
Pre-bedtime sword-fighting with our night-time nurse...Who says you can't sword-fight while hooked up to an IV?
Then suddenly it was bedtime.
So we lay together and read bedtime books in the quiet of the room, just the two of us....
....and the day was pronounced "good."