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!?
Nope.

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.

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 more....fun?

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!

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.

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.

Mind Your P's and Q's {R4, Day 19}

Remember how Sam was a little bit snarky yesterday?
Some of that continued today.

He protested the need to write the letter "q" in his handwriting (without tears...oy) book today.
(I decided today's blog post title early on!)

And then he felt that it was most important to finish the rest of his schoolwork like this:

No need to turn your screen. That's how I felt, too.

and like this:

Yes, that's his bed all cranked up like a nest. Journal writing...

Nurse L came for a visit, and Sam read her a story (any excuse to get him to read to a new audience, right? This is such a sneaky-mama trick. Some day he's going to read this blog and realize just how sneaky I am....)

Thanks to Stephanie and her family for sending Sam the book "Tuesday" which was a huuuuuge hit.

But overall, today was an uneventful and quiet day. Bubbie and Zeyde came over so I could go and have a quick lunch with a friend (wow, it was so "normal"). There was plenty of eating (random stuff like apple pie and cheese toast) and drinking (he's on a Vitamin Water kick) and a little trip downstairs for a visit to the "library" - have I told you about the wonderful Soref Resource Center? They have thousands of movies to check out, along with video games and other resources for parents, etc. The coolest thing, in Sam's opinion, is that the movie catalog is actually the covers of the DVD boxes arranged in binders by genre. He gets to flip through the binders - frankly, it's a whole lengthy activity in itself. (Forgive me, I think I might have already told that story....hospital life can be a little repetitive!)

You can sense the excitement when hospital-staff people talk to us - "hey, this is your last round, right?" or "aren't you guys almost done?" or "oh, you must be going home soon, right?"

And yes, it is.
And yes, we are.
And YES.... we are...not soon enough!!!!

Testing Patience {R4, Day 18}

Today was a lot like this:

It's funny - even though the weather INSIDE the hospital never changes, when the weather outside looks like that, you just want to curl up in jammies, drink cocoa, and watch a movie.

Sam did all three.

But man, was he full of snarky energy today! Everything was a little like pulling teeth (he's got a loose one, so this shouldn't be so hard...) and probably took 20 minutes longer than it needed to. He was silly and cranky and bouncy and alternated between gleeful laughter and total cranky-pants-attitude every half hour or so. It was....exhausting.

There was schoolwork:

 Lego-building:

 Arts-and-crafts-doing (thanks Aunt Joni and Uncle Gerry for this cool kit!)

 And lots of nurse-baiting....

Sam also got to FaceTime with his class today, and they read a story together. Then the class went off to do the exercise related to the book, and so did we. It held some power for me, but less for Sam, that we were aligning ourselves with exactly what was going on in the classroom.
My favorite moment of the day? Sam held. my. hand. as we walked downstairs. Remember, Sam can be...um...a tiny bit prickly sometimes. So the fact that he held my hand....wowza. He also told me that I was the greatest mom. Yep. I'm sure that will change tomorrow, but I'm basking today.

A dose of platelets gave Sam a lot of pre-bedtime energy. We did 10 laps of the unit before bedtime to burn off some of that and let me tell you, it makes you understand how someone could win a really big bike race when hopped up on blood products....wow, it gives him such a boost!

He told me how much he wants to go home. I think it's right on schedule, his homesickness. We talked about how soon that will happen, how things will go back to "normal" and how much he misses home. And now he sleeps....until tomorrow, friends.

The Book Is Always Better {R4, Day 17}

Let's start with the Big Drama.

There was a terrible shooting incident in Brookfield, Wisconsin, which is pretty near to the hospital. The victims of the shooting were taken to Froedert Hospital, which is the grown-up hospital adjacent to Children's Hospital of Wisconsin. In fact, one time Sam and I trekked over to Froedert's cafeteria for dinner, using the hospital tunnel system. The Emergency Rooms for both hospitals actually share the same entrance. Because of the high security nature of the victims (and the shooter was still allegedly at large), both Froedert and Children's were on lockdown procedures. No one out of their rooms. At all. This all happened as I was driving to Milwaukee after Sunday School today. No turning back for me, and they let me into the hospital ("you're a mom, of course we're going to let you in!") but I was escorted to the room by a security guard. And then Uncle Josh, my mom, and Cantor Lynda, who had all come to visit before the lockdown started, were escorted back downstairs by a security guard. Whew! It was not in any way a "close call" for us but it felt very strange to drive right by the news reporters who I knew were broadcasting to the whole world. My heart is full for the families of the victims and for all those who have been affected by this sad situation.

Actually, this picture was taken by Uncle Josh over the weekend. But I thought I'd break up the story with his cute face.

The lockdown ended a few hours later, with no danger EVER to the hospital or the patients. We passed the time drinking hot chocolate (Sam), playing Words with Friends (me) and watching Harry Potter and the Prisoner of Azkaban (both of us)! If you'll recall, Michael told you that he and Sam finished the book on Thursday. Sam learned a valuable life-lesson today as he (over)analyzed the movie and found it lacking: The book is always better.

When we were finally released from our lockdown, we took a quick jaunt downstairs - exercise disguised as a dinner-acquiring-mission - and spent a few minutes playing Wii followed by a long bath, SpongeBob, and a few chapters of Ramona Quimby, Age 8. (A whole issue for me, since I'm now going to have to re-read this book to Yael, who just finished Ramona the Brave! I can't wait until they are both home to be read to together.)

Medical Stuff:
Sam did spike a few fevers over Shabbat. They started him on a couple of antibiotics and are waiting to see if there is an actual infection. Thankfully, his fevers went down, with the help of a little tylenol. He also got platelets and blood. I remember back to the beginning, when those blood transfusions seemed so scary. I had asked the doctors if this was "normal" and how many transfusions we could expect. There was a moment when the two doctors in the room paused, looked at each other, and then one finally answered, "Ten to fifty." I remember bursting out laughing at what seemed like the ridiculousness of this range. But now? It seems like it was a pretty good estimate. They give blood when he needs it and don't give it when he doesn't. So it's entirely dependent on how his body uses the blood and how fast he can return to being able to produce his own. I have actually lost count of how many whole blood and platelet transfusions he has received. But let me tell you, I will never take a blood drive for granted again. To know that the blood is just there when we need it...priceless.

Other than that, Sam is doing quite well. The blood gives him a little energy burst, which is nice, and he hasn't had a big appetite but unlike on other rounds, he hasn't stopped eating entirely. Whew. So far, we have been able to avoid putting him on IV nutrition - that is a first! We'll see....I'm not counting my IV poles before they're hooked up.

We continue to wait...

Oh, and P.S. the kid is growing back his eyebrows, eyelashes, and HAIR. I might not be counting my IV poles but I'm counting the little hairs on his head...

Pretty soon, HOMEwork will be done at HOME. I'm just sayin...