Here we are {day 2}

Did you know that when they send up the chemo in bags (as opposed to syringes) the kind folks in pharmacy put stickers on the bags?

Cute little stickers. This week it's been owls.

The bag is filled with, in essence, poison. It's important and useful and scientifically awesome poison. But nevertheless, it's poison. In a bag with a cute little owl.

Really....things are going fine.

Racing against his mom

There were laps and smoothies ("I'm off hamburgers, now, mom. I'm into smoothies.") and lemonade and some silly games with Rabbi Steve, who is a great hospital entertainer...even if he did bring a rubber chicken that makes terribly annoying noises.

 There was a lot of drawing and reading. A lot of happy silly Sam.

 

Some of the food started to seem "not right" to him. And he decided to forgo the last few laps which would have put him into the lead on the lap-recording board because his tummy was bothering him.

So far...well, we're here.
And that's about all we've got for now.

Beginning Again {Day 1}

We slid back into hospital life.
As though we'd never left.

It's much easier to come back to the hospital with the line already placed, with some expectations already there. It's so ridiculous that I say things like "it's easier to come back to the hospital" -- as though this is just a normal event in our lives.

Waiting in clinic to be sent upstairs. Love the face.

We were whisked up to our room quickly, but then we did a lot of hurry-up-and-wait. It didn't bother Sam much, except that it took a little while to get him in the computer which delayed his first hamburger order.

Testing out his new magnetic dart board courtesy of Asher and family (thanks!)

This protocol is not one that is regularly run, so it had to be manually entered into the computer. They knew we were coming but they were double-checking to make sure it was all ready.

There are five main drugs involved in this protocol. One of them, topotecan, will be very slowly infused over 120 hours. Yes, you read that right. He will get a continuous chemo drip. While this is new to us, it is not new to our nurses -- which is always very comforting to me. I like to know that they've done this before. Another drug only needed 6 minutes! There are a lot of moving parts to this protocol and I am very grateful for the computers and such that keep careful track for our nurses and doctors.

So far, we've been in the hospital for about 8 hours. Sam has eaten 3 hamburgers, done 20 laps, watched a bit of television, and played a weird and silly form of charades which is really just act-something-out-and-make-mom-guess-what-it-is. There haven't been any noticeable side effects...yet. We've had visits from doctors and nurses. I love their vigilance. It helps me to sleep better at night. And considering how little I slept last night...I'm looking forward to those regular vitals checks to help me sleep better. It sounds so backwards, perhaps, but the comfort that it brings me....let's just say I'll rest easier knowing that they're watching him. At home, the slow creep of the leukemia cells just kept me awake.

We're back in room E583. We did the fourth round of chemo in this room. It was, in that strange way, a happy round of chemo. Sam had almost no major side effects. It was the final round. The one that sent us on our merry way...what we hoped for...the goodbye to the HOT Unit and the road to the bell-ringing. It's a nice room with a sunny eastern view and a big bathroom. (These are the criteria, by the way, for a "good" room.)

As I type this, Sam is contentedly drawing. The IV pump is humming away. The sky is blue and streaked with clouds and I can tell that the sun is getting ready to set. It's peaceful and calm.

I'll just keep hoping that it stays that way.

On The Bridge

Today the doctors presented us with the new course of treatment.

"We aren't going to get four or five more chances to get this right. We have to get him to remission now."

Sam's body has had enough of the treatments they've used so far. No adverse side effects that they can see (like heart issues, the primary concern) but it is not worth the risk.

And so we need a new course. A new plan. A new way.

This won't cure our little boy.

This is a bridge. We need a bridge to get him to remission to get to transplant. Transplant is the curative treatment. This is just a bridge.

A long and very narrow bridge.

This bridge has a lot of names like clofarabine and vinorelbine and topotecan and thiotepa and dexamethasone. It's a consonant-and-vowel-heavy bridge. It has side effects. Many many side effects. Or none. Who knows....they don't. We don't. Only jumping in and doing it will tell us. They continue to be confident and positive and hopeful.

We can't NOT do it. So we move forward. We proceed. We sign the consent forms and ask questions and pray. A lot of that.

It all starts on Monday.

What We Know...

They said there would be 1 or 2 rounds of chemo before transplant.

They said it.
But I didn't believe it. Because he did so well.
"He recovers very well from chemo," said the doctor.
(I'll put that on his resume, okay?)

He did so well with everything...so they had actually started the transplant process. Nothing set in stone. Nothing promised. In fact, I agreed not to hold them to any calendar dates. Just some conversations. A few appointments scheduled.

There was optimism about the results of the first round of chemo, the bone marrow biopsy that was performed on Monday. I asked the doctor, "is this optimism based on a 'good feeling' or on actual science?" His response was that Sam's quickly rebounding counts were worthy of real optimism.

I believe that this was the first time (with us) that they were surprised by results.

Sam is not in remission.

There is still leukemia present in his bone marrow.
Not nearly as much as there was at the beginning of the month.
But enough to require another round of more-intense chemotherapy.
Enough to postpone the transplant, but not indefinitely.
Enough to set in motion some calls to colleagues (theirs, not mine) to collect opinions about what to do next.
Enough to get us back to the hospital sooner rather than later.

We don't have a lot of answers.
In fact, we don't know much at all right now.
We know that Sam will go back into the hospital on Thursday or Friday.
We know that the road will be rough.
We know that we are scared.
We know that Sam is not, and for that we are grateful.
We know there will be laps and hamburgers and multiplication problems and probably way more SpongeBob than any one kid needs.
We know there will be the routine of hospital life and we know there will be new and different challenges.

We know that we will continue to pray and hope and believe and wait and love and breathe and then pray some more.
We know that you will all be with us...and we are thankful.

More to come as we climb this mountain...

110 and Outta Here! {day 23}

Well, a jump in ANC from 22 to 110 buys you a first-class ticket home!

But first one final hamburger...

...a bang-up pack-up job by Dad...

An EKG, echocardiogram, and dressing change later....

 HOME

Tentative schedule:
Bone marrow biopsy and lumbar puncture on Monday. These will determine Sam's official remission status...which leads us directly into the bone marrow transplant process. More on all that as it plays out.

With gratitude to everyone for all your love and support -- we are eternally grateful and thank you so very much for the packages and mail, the videos and emails and text messages and jokes and drawings and gifts...the meals and the baked goods and the LOVE that we feel each and every day for our whole family. Thank you thank you thank you.

Blessed are You, our God, who has brought us to this moment of celebration.

Twenty-Two {day 22}

Every morning, somewhere around 4am, the night-time nurse draws Sam's blood for the lab. This blood is sent down to the laboratory, where it is analyzed and the teensy tiny neutrophils are counted.

And then, usually around 7:30am, the resident comes in to do a morning exam. This person also has, usually, read the lab report. Residents change regularly -- they do one-month stints on the HOT unit for the most part.

But starting at about 6:30am, there is what seems to be a flurry of morning activity in the room. Everyone does their best to be quiet, but the nurse is in and out, the housekeepers usually empty the trash, and it just seems that there's a lot more activity. Each time the door opens, I pop my head up, hoping it's The Person With The Lab Numbers. And if it isn't? I pretend to be asleep...but I'm not really.

(Oh, and let's all remember that I am terribly nearsighted so it's often a guess as to who is walking in the door based on the general blurry shape and color of their clothes. I've gotten to be a good guesser.)

This morning, at about 7:30am, the resident came in. He is a really good guy, and Sam seems to like him a lot. He came over, asked me about Sam's night, and said that he would let him sleep and examine him later. Then I said, (trying desperately to sound nonchalant and not DESPERATE) "do you have his labs?"

"Oh!" he said, like it wasn't important at all. "Sure! Well, his ANC is only 22."

ONLY!? 22!!?

"Twenty-two is NOT only!" I said. "Twenty-two is a NUMBER!" (I'm sure he thought I had gone mad at this point.) "Twenty-two is SOMETHING! Twenty-two on day 22!"

He laughed a little and agreed.
And then I did a little happy dance.

Is it a great number? No. But it is a number, and a good sign that Sam is headed in the right direction: up! (And in Sam-historical terms, it is the earliest day that he "got numbers" and that is a good thing.)

And so we continue to wait and wonder and hope and prepare....while eating hamburgers and smoothies, doing laps and and homework, being sweet and snarky to nurses and doctors...and all that jazz.

Recording laps

Smoothie recipe -- turns out that food service will make this one for us!

Sam had two visitors today from school -- he was so excited to take a science test, a math test, and a spelling test!

Holy cannoli, check out all those laps!

Sam has actually been in a spectacular mood. He chats with doctors and nurses, he is friendly to folks we meet, he flirts with babies and he pokes fun at his parents. Overall, he's been a lot of fun to be with in the last few days. He's still ornery when he wants to be, and there is far more Sponge Bob in my life than I could ever wish on anyone, but let me tell you, this is my wonderful kid and I'm so glad his sparkle is shining through.

So we wait...

Rinse, Repeat {day 21}

Sam's To Do List Today:

 drink a smoothie

do homework

do laps

watch full house (be shocked to find out that Michelle is played by two people)

eat a hamburger

play hangman 

eat a peanut butter & jelly sandwich

do math with Zeyde

eat a hamburger

do laps 

banter with nurses

eat a plum or two

drink water

read books with Karen

"She's MY friend, mom. She came to see me, not you."

go downstairs for a quick breath of fresh air

play hangman

choosing words from his new Dragonology book

eat a hamburger

drink water

eat apple slices

more homework

watch sponge bob

do a headstand in bed

be absolutely adorable

have no immune system to speak of

wait for tomorrow :-)

Tomorrow they are doing a "manual differential" which means that they're giving the gerbils (okay, FINE, it's probably a machine) that normally count neutrophils the day off and asking a person to do it. Let's hope that poor soul isn't stuck looking for something that isn't there, right? It would be early to have counts but his white blood count has risen ever so slightly and his hemoglobin and platelets are holding steady...which are super-good signs that his body is starting to recover. Not getting too excited but it's nice to feel that we are actually progressing even though there's not much going on....