Wednesday, October 31, 2012

Rising Trend and Metaphor Mixing {R4, Day 27}

One of the things that they're looking for is a "rising trend."

Do you think that going from an ANC of 18 to 70 overnight is a rising trend?

Me too.

The staff was quite pleased. Our attending physician actually solicited guesses from the rest of the staff during morning rounds, as to what Sam's ANC would be tomorrow. He himself guessed high. Very high. It was a mite hard to take him seriously with his leprechaun hat on, but overall...spirits are good.

Could it be tomorrow?
Or Friday?

What exactly are we waiting for? Something around 150, probably...although anything over 100 is still considered a "rising trend."

So while we await the continuation of the rising trend, we celebrated a little bit of Halloween.
Dad came for the day and brought Sam's Harry Potter costume.

The two of them participated in the HOT Unit Halloween Party, which had crafts, food, and some trick or treating that I think involved a few stuffed animals (way better than candy, if you ask Sam).

Later on, Sam tested out his new light-up turtle (he couldn't wait for bedtime), and it made a really cool picture: (Thanks Sara, Richard, and Roo!)
I'm alternating between total excitement and a desire to manage expectations. I don't want to get Sam's hopes up for leaving tomorrow, but I want him to be aware of the "last time" that we do things. Today we took a little walk and then I suggested we go back via the "secret elevators." I told him that maybe this would be our last time in those elevators. He liked that idea.

I spent some time today talking with one of the nurse practitioners about Sam's future medical plans. It's hard to believe that we have been at this for five months, and that our hospital journey is about to come to a close. There's a little bit of anxiety about this, since there's quite a feeling of security here, knowing that we are cared for and that Sam is checked and watched and monitored. (We can always call the magic phone number that gets me to the Charge Nurse.) I asked, for the first time, for some statistics. What are the relapse rates? What are the statistics that we will go home and never come back? What are we looking for? How long until we feel completely safe, until we have no more worries? Some of those questions she was able to answer. But others she wanted to check with someone else - to see how Sam's low risk factors figure into the equations. I will get more answers over the coming weeks.

Overall...we are doing well. The light is bright at the end of the tunnel. But what is at the end of the tunnel? I think it's a big forest. I know I'm mixing metaphors here, but once we are out of the tunnel...we're in the woods. And we won't be out of the woods for five years. The woods will probably be lovely, right? Fresh air, beautiful trees, life experiences, trips and celebrations, school and camp and life.

I think we can live in the woods. It will be much nicer than the tunnel.

They don't declare him completely safe, free of risk of relapse, until he's been cancer-free for five years. (Which, if you're calculating, is about his 12th birthday.)

But for today?
I can only think of home.
And of taking my kid there.

Maybe tomorrow.
Or Friday.

Whenever it is...each day, each moment, we will celebrate.
Life is a gift.
And we are grateful.

Tuesday, October 30, 2012

Today's Chai-light* {R4, Day 26}

*Title totally stolen from Rabbi Steve, who responded with that pun after I texted him this morning!

This morning, when I woke up, magneted to our whiteboard was Sam's lab results.
And at the bottom, our nurse had written:
For those of you unfamiliar with Hebrew gematria, the Hebrew letters that add up to 18 spell the word "chai," which means "life." Yeah...let that sink in, okay? Not bad for Sam's first ANC of the final round...

On his last round, his first ANC was 36 (double chai), which caused me to burst into tears and explain why to our nurse practitioner. This time I taught our oncologist. That's me...#whatrabbisdo.

That was an exciting beginning to our day, because now that Sam has some numbers....hopefully it's all UP from here! I don't want to make any plans (we all know what God does when we make plans) but let's just say I'm pretty confident ready to believe that Sam will be home for his birthday next week. Who's got two thumbs and is super excited? Yes, that would be me.

Okay....moving on to our day. Which was....regular hospital stuff. Except that now Sam is very interested in mealtimes and snacks. As in, who is this eating/drinking machine? He's still not quite as interested in ordering from food service (I mean, honestly, who is?) but he powered through an entire package of strawberries in the last day and a half and he had four Carnation Instant Breakfast packets mixed with an entire carton of milk each time. Plus other meals. So Actually, he's currently having a pre-bedtime snack of half a toasted bagel with cream cheese. I spent a lot of today warming up food and preparing snacks. Let me tell you - I am absolutely not complaining!!!!

Other highlights chai-lights of today....
Chess with Bubbie (and yes, he is shirtless. "it's comfortable!" he told me.)
 More chair racing:
 An incredible anonymous delivery this morning - we got boo'd! Thank you!
Also music therapy, hopefully Sam's LAST one!
And one of my favorite moments of the day - three kids with poles (and one sibling) all playing Wii together. It was quite remarkable to hear them all speak the language of video game...they barely knew each others' names. It was also lovely to sit with a couple of other mamas and share stories and encouragement. There's such a bond that we all matter the diagnosis, we have the same kinds of fears and hopes for our little warriors. There are so many times that we're all holed up in our own rooms, it feels like we're all in this together when the kids can play games and we can talk.
Sam is so darn proud of his Bears-fan-dom. It's kinda silly, actually, since he really doesn't know anything about football. He just loves to wear his Bears gear and tell people that he is from Chicago. It does get him quite a bit of attention in Packer-land.

And darn it if he isn't the cutest little Bears fan around:

So that's life here in our little nest. I look forward to telling you good news tomorrow (So let it be written, so let it be done...) and counting, along with Sam, the minutes until we skedaddle back across the state line. I can almost touch it, taste it, feel it....breathe it. Until then...we wait.

Monday, October 29, 2012

Crazy Chair Racing {R4, Day 25}

I'm not going to lie.
I was totally bummed to still be in the hospital today, day 25. The day we've gone home twice before.
But you know what? Today I got over it.

One of the doctors said to me: "This is NOT evidence of cancer. It is evidence of beat-up bone marrow."

It just needs time. If they are not worried, I resolve not to worry.
(Tomorrow, they're doing a "manual differential" to let the little automatic blood-counting-gerbils have a day off while a human lab tech manually combs through the neutrophils.)

I look around the unit and I know that there are kids who are NOT doing nearly as well as Sam. I know that all over the world there are kids with cancers of all kinds who are miserably sick. I know this. And so I can wait a few more get it right.

So this was our day....

Sam made everyone on the unit giggle as he realized that rolling chairs make perfect racing vehicles.
(There was a little bit of "shouldn't he be wearing a helmet?")
And he even conned one of our nurse practitioners to race against him.
After her one race, guess who was his favorite opponent? Yep, that's right. Good old mama. Hey, that's a very good workout! Until I slipped off and landed on my tush. But um...I'm okay.

The rest of the day was, again, uneventful. Sam played chess against Bubbie (things I didn't know about my mom - I didn't know she could play chess!) while I slipped off to have a shower and visit the grocery store.

He might be a little bored...or just 6.
self-portraiture by Sam
Today Sam got a great stack of packages, including a pretty amazing one from an artist named Eric Winter. Eric heard about Sam from the ThinkGeek blog (wow) and instead of taking a picture of himself in a superhero t-shirt, he created a superhero just for Sam! I really love that he figured out that Sam loves turtles and swords and incorporated that into the sidekick, too. Sam was pretty excited and donned the Mega Turtle t-shirt right away (as I type this, he is wearing it to bed). Thanks, Eric!

I am constantly awed by the total strangers who have been unbelievably generous to our family, not to mention the countless people that we actually know and love who have been caring and loving. Last night, I lay awake, unable to sleep, mentally composing the words of gratitude that I plan to write when this is all over. I actually considered writing it down, but I couldn't bring myself to "jump the gun" and write the "last" post while we're still here. But let me tell you, I have never been so filled with gratitude in my entire life. This has changed our family forever, but in so many ways, the blessings have had just as much impact, if not more.

So we sit, snugly ensconced in room E583. And we wait.
And knowing that you're all out there, loving us, makes it all a lot easier.
Thank you.

Sunday, October 28, 2012

Sunday Snippets {R4, Day 24}

Another day on the HOT unit....with not much to report.
Sam is still neutropenic.

And while I'm totally impatient and frankly, worried, by the lack of any neutrophils (and therefore an immune system to speak of), the medical staff are unconcerned.

I mean seriously unconcerned.

Not even a glimmer of concern.

Which should make me very very very happy.

And I am. Totally glad that they are unconcerned. That there is nothing to worry about.

Has that ever stopped me before!?

Each day that he is neutropenic there is still cause for nervous worrying.
But since they are unconcerned...okay, I'll try.

Tomorrow is Day 25. It's been our going-home day twice now. Sigh.
I'm trying really really hard not to make a big deal about how many days it has been. I don't think Sam really knows what day he went home last round.

But trust me...he's ready.

Ready to do his homework at HOME. (and his schoolwork at SCHOOL)
Ready to lay around on the living room floor.
Ready to give up the regular vital-sign-checks.
So... in the meantime, we welcome visitors, read books, play video games, take walks, make up imaginary Harry-Potter-ish spells, and generally wreak havoc on the HOT unit....
Best hospital playdate ever! Thanks, J, CJ, and K for a great hang-out!
Fighting imaginary wizardy bad guys
Cats HATE baths
Maybe tomorrow is the day.
And if not, maybe the next day.
It will happen, that's what they keep telling me. And so I continue to have faith....

To all our friends and loved ones in the path of the storms...we pray for your safety and well-being! Much love from our little nest in Cancerland.

Saturday, October 27, 2012

Eyebombing {R4, Day 23}

Shabbat was uneventful.

And by uneventful, I mean there were no events.

And by no events, I mean Sam has nothing new to report.

And by nothing new to report, I mean that Sam still does not have an ANC.

And by that, I mean....I have no patience.

But the doctors seem largely unconcerned.
I'm just impatient. Ready to get on with it. C'mon! Let's go!

Anyway, back to reality. The last few days have been quiet and calm-ish. There was art and lots of video games, schoolwork and singing, silliness and puzzles. Yep, Normal in Cancerland. There was also a transfusion of platelets (Friday) and whole blood (Saturday), which helped Sam to feel better, with more energy and less crankiness. (Whew!)
We had a lovely visit from Annie and Laurie, on their way home from camp! Annie baked Sam cupcakes, which he had a great time frosting and sprinkling, and of course eating!

The other day, I found a funny idea online. It's called eyebombing and I thought it would be awesome fun to do in the hospital. And I knew that Sam would get a kick out of it. Annie and Laurie stopped at the Ben Franklin in Oconomowoc (one of my favorite places) to pick up some googly eyes...and here are the results of some of our adventures around the hospital after they left:

Sam loved it. He loved figuring out where the funny places to put eyes would be and he had strong opinions about how close together the eyes should be.

Don't they make the hospital just a little bit

So do an ANC dance for us, okay? Put on your googly eyes and your silly hat and your stickon mustache and dance, baby, dance!

Thursday, October 25, 2012

Count Your Blessings Twice {R4, Day 21}

Not every room is as peaceful as ours. Doors down, through the walls I hear someone's baby screaming inconsolably.  He or she has been screaming on and off for over an hour. I feel that family's pain. I can only imagine sitting with them and endlessly praying that I could take their child's pain away and settle him or her down to a good night's sleep away from this strange, scary, unfamiliar environment. Pray that one of our world geniuses figures this illness out and changes the world with something I hope tastes like chocolate. Perhaps like mana from heaven, every person's cure should be flavored like their favorite food or dessert. Pray because someone always needs your prayers. Act because every day we are a day closer to someone unlocking healing for all those in need.

But I get ahead of the day's story of our young hero ... our day starts twelve hours earlier with a morning smile, the first day's drink and mischief on the horizon...

Our young hero awoke with his typical verve, smile and boundless energy. Dressed and hydrating he quickly took to tending to his dragons as the Torah commands us to tend to our animals first since they can't tend to themselves. Once all his digital animals were fed and groomed Sam drank a breakfast drink and welcomed Miss T for his morning tutorial. Their heads close together, they bantered and studied their way through some of Miss T's best educational iPad apps. Each day they both thoroughly enjoy their time together. Sam is not pleased that Miss T has a class she has to take tomorrow and is unavailable for their daily lesson.

We were most fortunate today with some of our favorite staff members caring for us and many of our other favorites saying hi as they passed us in the hallway. LA was in charge of the floor throughout the day and in charge of Sam for the end part of the afternoon. Much laughter, cajoling, ribbing and needling went back and forth between Sam and his best frenemy all day.

After his lesson Sam and I adjourned to the common area to do his written work for school at home. We made it through his journal writing and part way through handwriting when Grandma and Sam's friend E showed up to brighten his day. We packed up the homework for later, Sam sat down to his second breakfast (some would call it lunch or brunch but why rush the day) of (you guessed it) chicken makhani from our most famous and delicious Highwood restaurant, The Curry Hut.

After his repast Sam and Emma talked dragons, played dragonvale, swapped digital devices, complimented each other on their fine selection of digital entertainment and watched Harry Potter and the Sorcerer's Stone. Emma enjoyed a hot dog and fries from food services while my mom and I took turns going down to Cafe West for a nice lunch.

Bubbe and Zayde showed up close to the end of the movie. Grandma and E had to leave. Sam enjoyed opening the slew of packages that had arrived from his friends and family. He especially loved all the Halloween decorations from the Bach family in New York. That Alatia just KNOWS how to spoil a boy with the simple, finer things in life. 

Sam hugging all his new decorations!

Sam & Zayde sorting through all the ghosts, spiders and goblins!

Sam admiring his new skeleton collection

We LOVE Melissa & Doug

Sam also got some more incredible gifts from friends and fans from Melissa & Doug (who I think are the greatest creators of toys and games for kids EVER!). Sam received some incredible books too and an awesome chess set. He received a volume titled, Harry Potter and Torah (which he claims is for him while I am certain it is for both him and his mother, but way more for his mother).

After everyone left a friend arrived bearing gummy worms, jelly beans and candy corn while Sam and I finished his homework. Once the homework was completely we took out a new Melissa and Doug game from yesterday, Suspend. This is one of the coolest balancing games I've seen in a long time. It reminds me of a modern version of a fifty year old game from days of old. Using Physics and balance you place one metal rod upon the other to see if you can balance all the rods evenly without causing them to come crashing down. Sam was fascinated and thrilled while playing.

It was awesome to behold how Sam took to the challenge of the game and embraced its simple complexity. After the game Sam had an impromptu play date with a friend on the floor who came out to play wii. The two took turns playing Pirates of the Caribbean. They laughed and giggled while taking turns fighting off the pirate hoards. Us dads talked a little, compared a few notes and settled into our own minds as we watched the boys enjoy each others company.

From there we adjourned to our room for more fluids and our evening meal. After eating, Sam and I watched the recent version of Yours, Mine & Ours. Sam wondered if the comedy would have a sad ending, but I assured him that almost all comedies always end with a happy ending. He seemed reassured. The movie ended slightly before bedtime so I engaged Sam in a writing challenge. He would pick the subject matter and we each had five minutes to draw his selection. He picked an Elephant and we both dove into the assignment to see what we could create. It was a lot of fun. Then we finished prepping for bed, turned out the light, sang Shema and turned on his new dad, Brandon Frasier, to read him to bed with his tale of dragons.

As I prepare to quiet Brandon's voice for the night, a calm silence has spread across the floor. Our prayers for peace and healing have worked their miracle on the sad, scared baby a few doors down. Sleep brings so much healing and peace for all of us each night, more than we can ever know. Our bodies regroup and replenish themselves as our minds soar in worlds where anything is possible and all ills can be healed with a smile and a song.
I always count my blessings twice to remind myself how fortunate I am in this world. Thank you all for being so many of my countless blessings.

Wednesday, October 24, 2012

A Completely Different Child {R4, Day 20}

Sometimes I truly believe that my wife and I are raising and caring for a completely different child.
Sammy woke up with his incredible smile today, ate some nan and chicken mackhani for breakfast (you read that correctly, I mean if he lived in India he would always have Indian Food for breakfast)

and Miss T came to teach him some of his lessons for the day. They educated each other while playing some apps on Miss T's ipad and when she left Sammy and I went out to the common area to do his written homework. No fuss, no muss, no tears, no threats, no cajoling, no anything. "Let's go and do your homework." "Ok." I swear we are raising Dr. Jekyll and Mr. Hyde.
Sammy did an incredible job of journaling about Squids, doing his math and practicing his hand writing.

A little after midday Sammy had a playdate with one of his floor friends who has been discharged and now lives across the street at the Ronald McDonald House with his family. While we parents talked about resting, surviving, parenting and the world series, the boys had an incredible time playing the Xbox together. They played Lego Harry Potter for part of the time and then Sammy taught his friend about using the force in Force Unleashed. I think they both loved the opening sequence when they got to be Darth Vader for a few minutes, but then again who hasn't wanted to be Darth Vader at certain moments in time. What an incredible slice of normal surrounded by all our HOT unit friends and family who constantly stopped by to check if we needed anything or just to say hi.

After the play date, Sam had a FaceTime call scheduled with one of his friends from home. They enjoyed each other's company while discussing the finer points of Dragonvale and breeding certain kinds of dragons. Sam has learned the fine art of being on the iPhone with FaceTime while showing his Dragonvale Park on the iPad to the person he is speaking to. It is multitasking and multimedia at its finest. The two boys enjoyed sharing their knowledge of dragons and making plans for when Sammy gets home.

After FaceTime Sammy opened some of his packages. He was very excited to receive a kindle considering he is just learning how to read. The real excitement was that our friends knew this about him and had loaded it up with audio books for Sam to listen to. He loved that and loved figuring out how the kindle worked. As I type, he is tucked cozily into bed, listening to Brandon Frasier read a book about, what else, dragons.

In this pic Sam is playing a game while his kindle reads to him. He is literally in digital heaven.

Just after dinner we went for a walk downstairs to return some dvds. Needing to be dressed appropriately, Sammy donned his new Spiderman hat and glasses for our jaunt downstairs. Little did we know there was a family program going on this evening. Sammy was very excited to watch Mister Pickles entertain a group of families, but was less than pleased as more people began to arrive and, fretting about exposure, I told him we had to leave. We left with two more movies to watch, but Sam was convinced he would never again have the chance to be entertained by Mister Pickles. I assured him that if I had to hire Mister Pickles for his birthday I would, as long as he left with me quietly. He was barely molified, but accompanied me back upstairs. Better safe, than sorry.

Once upstairs Sammy got ready for his bath. Deciding to have his evening meds before the bath Sammy opened the remainder of his packages. To his joy he received a great magic kit and two marvelous games.

Meds done, aqua guard in place, Sam climbed into a nice warm bath and luxuriated with his toys for a bit. Once finished, he got out, got dressed for bed and requested some more of mom's homemade mac and cheese to satisfy his new found hunger. He watched some Johnny Test and ate his food while I tutored Hebrew via FaceTime. In the middle of my conversation he requested more food so I let him talk to Jasper, one of his many fans, while I prepped more mac and cheese. Jasper and I finished going over his Torah portion, Sammy and I finished watching cartoons, and day twenty came to a quiet close with us singing the Shema together, and a dragon tale being whispered into Sam's dreaming brain.

The problem with listening to an audio book as you fall asleep is that you can never remember where you were in the book when you drifted off. We will see if Sammy cares, or if the important part is just having other people to read to him when Phyllis and I cannot. Of course he might ask for different parents, at some point saying, "Brandon Frasier never tires or reading to me. He can read to me for hours! Why can't you and mommy read to me that long?" "We paid Brandon and others to read all those books to you. We don't get paid by the hour to tend to your every need and read for hours. Parental slaves have other chores sometimes too." May that conversation never come.

It always amazes me which parts of the day go slow and which parts fly by, ending before they even seem to begin. From homework, to meals, to friends, to walks, to evening and preparing for bed. The time flows in such odd bits and pieces until the sun finally sets and I realize it is once more time to pull out my bed, and prepare each of us for the end of a day once again. When here, I only focus on the minutes in front of me. I rarely think beyond the closest hour, the next cup of water for Sammy, when he might be hungry and when it will be time to walk around down stairs for a few minutes at the end of the day. Sammy in his best moments makes the time flow smoothly as he attacks each moment with his typical verve. Only Sammy at his best has made the passing of all this time possible with any strength or nerves left intact.

At times these days, my emotions catch in my throat as I allow myself for a moment to ponder his homecoming in the days ahead of us. November is no longer a month so far away that I can't see it. At this point June and the Summer are distant nightmares I've awoken from and can barely remember as my brain clears away the cobwebs of a deep sleep. Soon my whole family will all live under the same roof once more. Our schedules will adapt to whatever is our new normal. Tears of joy will flow fresh from all the eyes of those who joined us in praying for this single moment.
And all our prayers will ring with the hope that home is where we will stay for a long long time.

One of my constant prayers is that there comes a time when the room I now occupy, and every room on this floor will remain forever empty. And if not empty, may there be a time when every room is full of the hope we've been allowed. I wish our challenge on no family. I am only thankful to be part of such a large global community that has held us constantly in their strong arms and seen us through these most terrifying months.
You have my infinite gratitude. May I always pay forward your love, prayers and blessings.