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...

Pleasant Surprises for Everyone!

The day started late and grey, but gorgeous. Boppem Sockems in repose on the windowsill, the change of the leaves bright and beautiful as far as the eye could see, all the way to the city's skyline.

A little after nine Sam awoke with his award winning smile ready to tackle another day upon his healing path. We were excited to have Nurse E taking care of us all day. He'd stop in every hour or so and check in on us, sit for a while and talk video games and food. It was great to see him and catch up.

With some food and water in his belly, Sam's Hospital teacher came in and showed him some amazing things on her iPad. Toontastic:Free allows you to create and dialogue an animated cartoon with a soundtrack of your choice. It is an amazing app and occupied Sam's mind for all thirty minutes of the lesson (sorry, no pictures. Sometimes I forget I have a job as photographer and stand there as a bystander marveling at Sam's creativity and genius). We said thank you and goodbye and quickly downloaded the app for ourselves.

After doing some of Sam's other homework we were pleasantly surprised by a knock on our door. Cousin Ricky arrived with his flute to play for Sam, teach him some music and just jam together making cool sounds.

Sam even impressed Ricky with his ability to play his recorder with his feet (Challenge Accepted!).

Bubbe came during the jam session and delivered a special gift she eventually chased down after a few stops. Sam had requested a stylus to use for his iPad artwork in Sketchbook Pro. Sam did some amazing work creating a picture today with his new stylus. Well worth the price of the stylus and the exertion to get it. 

Grandma arrived mid afternoon for a tutorial in the fine art of breading dragons. Dragonvale was the language that prevailed and a hush filled the room as the two conspirators plotted their designs of the perfect Dragon park and the precise methods for breading Seasonal and Ghost dragons. Of course a fist full of iTunes Bucks (a wonderful gift from friends) that arrived during Music Therapy didn't hurt. 

All in all it was a very musical day. During Music Therapy, Miss N and Sam did some amazing work creating a riff called the Twelve Days of Halloween. The arrival of an iTunes card seemed only fitting as Miss N and I talked 80s music and trivia before she and Sam got down to the hard work. Sam and Miss M thought long and hard about what monsters to include in the song. Choosing twelve monsters was daunting, but they worked hard at the task and had an amazing time creating the song together. 

Towards evening things slowed down for a bit, we did a little more homework and watched some television. Sam had me reading the end of Harry Potter and the Prisoner of Azkaban fast and furiously all day. He couldn't wait to finish, although he wants to wait until I return to see the movie. Every break we had today was filled with going from 86% on the kindle all the way to 100%.

At one point Nurse E and Sam were talking about the video game, Golden Eye, when we decided to adjourn to the TV lounge so that Sam could show Nurse E how good he was at stealth missions in the game. Nurse E took a turn too. While we played one of our new friends, a two year old in his third round fighting Sam's same villain, toddled around our feet, smiling at us and working hard to catch our attention away from the screen. As adept as Solly in swiping tech, every now and then we would see him walking around with his momma's phone in his hand, dialing some friend or the other by their picture. 

We returned to our room, got ready for bed, finished Harry Potter 3, and put in the French animated film, A Cat in Paris, that our friends left for us yesterday. It was cute and beautifully animated. It was short and just what we needed to settle in to the end of the day. We finished the film, brushed our teeth, sang Shema and settled in for a good night's rest. 

Today was exhausting and fun all at the same time. Sam pushed limits yet always kept his smile and positive attitude. He ate, he drank, he played and sang. He took what he wanted from the day and made the best of it. Thank you to everyone who made this day exceptional and to all the prayers that have made this healing process possible. We've all worked so hard and now the goal is in sight. Watching our toddler friend, I couldn't imagine not being able to speak and needing my parents to figure out something was so wrong. And yet he toddled at our feet with a big grin on his face as if being in the middle of his third round was the most normal thing in the world. From children we must learn that we can conquer anything. From babes we must learn to smile and make the best of it no matter what because nothing else matters. It took everything not to scoop him up and cry with laughter and pain in my own fears and concerns for all of us. It just was. His mom and I talked video games and Halo while Sam played. We talked about apps a two year old might like on her old iPhone since clearly this digital generation is not to be deprived. And we sat in our own thoughts as our children played like children. 

I am blessed. I feel blessed. We feel all the love and prayers keeping us afloat. 

My love is infinite and my gratitude knows no bounds. Peace be with you all. 

A Day of Friends and Family

I will start off by saying I don't have nearly enough pictures to fully express the greatness of the day. Phyllis and I traded placed at eleven. Just after Phyllis left, Sam's teachers brought their Oak Terrace spirit front and center right to Sam's doorstep. It was incredible to see them, and Sam loved talking with them, learning and playing learning games. Here they are all smiles. Sam is holding his class picture before adding it to his wall of love photo collection.

A little bit after that, lunch was delivered in person. Our good friend, Adam Froelich of citypizzaovernight.com showed up bearing a new toaster oven for the HOT unit and fifteen of his special 10" pizzas to feed the whole floor. Sam talked and studied with his teachers while Adam set up in the small kitchen and cooked pizzas for everyone. All the staff loved the new toaster oven and the pizzas that just kept flowing throughout the floor.

Just after that Uncle Josh stopped by to say hi and drop off David and Yael to spend the afternoon with Sam. Sam's smile was ear to ear. Yael was super happy to find pizza served hot upon her arrival. Lunch Part II!

The day just kept getting better and better. After Sam's teachers left, and Adam headed home, Yael and David hunkered down to a day of Socker Bopper Fights, drawing, talking, playing Dragonvale, talking Dragonvale, and visiting the Dragonvale parks of all their friends. Before David and Yael left, Bubbe and Zeyde came to visit and sit with Sammy. While they visited I walked David and Yael down to the van where mom and baby Solly were waiting for them. Packed in for the car ride home, "I love yous" and "goodbyes" all said, I headed back up to the room for the rest of the evening with Sammy.

Sammy loved drawing pictures on his Boogie Board while I read some Harry Potter 3 to him. Sam drew a great impression of a Dementor from the book.

Sam's art work never ceases to amaze me. He gets better and better each time he picks up a pencil or a pen. Sam also enjoyed showing me how he loved his new Bears Hat. Always one to show his team colors in the middle of Packer's Country, Sam fears no fan.

Of course Sam makes all his fit models model his fashion choices before he makes his final decision.

There were so many incredible moments throughout the entire day. I only have mental images of David and Sam sitting together, watching a movie and discussing Dragonvale. Yael's response when Nurse LA sauntered into the room was explosive as she greeted her friend who she hadn't seen for a while. A floor friend and his mom wandered over to the HOT unit to check in on Sam and drop off an incredible selection of off the beaten path film titles. Sam took his leisurely evening bath before movie night. Right now Sam is watching the Spy Next Door as if he discovered Jackie Chan and is introducing him to me for the first time! Thanks Jake and Kimberly!!

I am exhausted in that good way after a day spent with some of my favorite people in the world. At times I felt like I was hosting a party for the whole floor in Sam's honor as I made sure everyone had some pizza to eat. I loved watching the joy Sam took in having his brother and sister in the room with him. I love how Sam takes each day a single moment at a time and wrings every ounce of specialness out of each moment that he can. In hard times it doesn't get much better than this as I marvel at my son who makes it seem that he can do anything while balancing on one hand.

May he always take such joy in the days ahead as his counts continue recovering and his days on the HOT floor fade to none.
Thank you all for making the days pass so quickly and making the love and prayers felt each and every moment of every day.

Mr. Energy {R4, Day 12}

I'm NOT complaining.
Sam has more energy with an ANC of zero than most of us have on a normal, good day.
I'm NOT complaining.

But I am exhausted!

A little scavenger hunt action this morning....

And of course, some sword fighting, this time with straws and a sweet nurse...

We were 72% into Harry Potter and the Prisoner of Azkaban so I convinced Sam to take a little break. He chose to lay on the windowsill using my pillow and blanket as a cozy cushion. It was so darn cute.

Finally, in the afternoon, Sam's favorite people arrived.
Yep, that's right. Did I mention that our teachers went on strike this morning? We knew it was coming, and since there was no school for our kids today, we decided that it was a good idea for them to come up here!

Remember how I've talked about transitions being hard? It's hard for all.four.of.them - to come up here and go back there and move in and out of the reality and the surreality of all of it. We had a lot of "normal," if you catch my drift. But that's okay too. And since the strike is continuing, we will have them back tomorrow...which will make it all easier. There were some mis-laid ideas about what was going to happen today, and we worked on those expectations for tomorrow.

Sam was full of energy after the threesome departed so after a few stories with Karen, there was a little walk to work off the excess excitement...whew.

Great hat, huh?

Like I said, I'm not complaining.
Not one single bit!

Uncle Joel asked Sam to wear his Yankees shirt to bring them luck. I'm not so sure it worked.

P.S. Now we're 80% done with HP3!

The New New Normal {R4, Day 11}

I know, you're all like, "what?"
Every day of each round brings new surprises.

Morning "school" with the hospital teacher, Miss Theresa

We were warned near the end of the last round that there was a somewhat-different rule (don't get me started to say "new" because technically, it was always a rule) in place during flu season. Kids with an ANC under 200 aren't allowed off the HOT Unit between the hours of 9am-5pm on weekdays. Weekends and evenings are fair game. Less people around, less chance of sick visitors (?!) to the hospital. Sam's counts went way down over the weekend but today was the first day of the NEW new normal around here. Weekday restrictions....

It didn't seem like it would be such a problem but there was a little bit of extra competition to use the Wii today (don't ask) and only so many times that you can play hide-and-seek around the floor, even with a few episodes of Phineas and Ferb along the way. By 4:30pm, Sam was getting more than a little antsy. Especially since the "library" - from which you can borrow movies - closes at 5pm on Mondays. Looking for new movies is an activity in itself -- sometimes we don't even watch the movies! So I got a little bit of an early reprieve. We were going to go downstairs at 4:45pm, right after Sam had his vitals taken. Except there were a few complications - a little tantrum that got out of control as Sam simply ran out of patience with the day.

Nothing that a little yelling, a little crying, and a few macaroons from a package couldn't cure.

The other day, Sam had a "craving" for these cookies. Who craves Pesadik food in Tishrei? So Auntie Jody made a call....wow (thank you!!!!). Sam was pretty excited. (I tasted one. Yep. Pesadik.)

Platelets and a little throwing up rounded out the day.

Sam giggled and teased as his nurse took his last (awake) set of vitals for the night, so I knew that all was well.

The nurse has to stay in the room for 15 minutes when running platelets to make sure that all goes well. I put her to work and had Sam read her a book!

Tomorrow we're going to consider some new strategies for hanging out on the HOT unit. We're going to brainstorm all the games we can play and employ all of our tactics for being in isolation, except we get the whole floor as our playground. I think the change in attitude will help us a lot. I foresee more scavenger hunts and board games and dance parties in our future. Stay tuned for a full report!