Proceed! {day 13}

It was a quiet night, punctuated by a few fevers from our hero. It didn't seem to wake him, though, and he woke up generally ready to face the day. We made a plan that included a goal of 22 laps (that's a mile, by the way) and got started right away:

Check out Sam's rockin' Team in Training shirt from the awesome group in St. Louis -- amazing.

Then there was a little rest after just a few laps, before our first visitor of the day arrived.
When Karen got here there were puzzles and books....two of her specialties (and Sam's too!)

The new Scaredy Squirrel book! We have a plan!

Sam seemed to wilt a little midday, another fever. I was a little worried, since I knew that one of his best buddies from school was arriving after lunch. Luckily, that perked Sammy up quite a bit, and he and Nick didn't have any trouble entertaining each other, giggling and playing and doing Legos in that great 7-year-old-boy-sort-of-way while Nick's mom, Tammie, and I visited and generally tried to stay out of their way.

They raised the bed up to be nest-like, one of Sam's favorite tricks to show his friends!

Sam's energy faded quite a bit after Nick left. It wasn't entirely about a let-down in the visitor department. He really lost his energy to the persistent fevers he's had most of the day. Not dangerously high, but high enough to buy him two different antibiotics. Hopefully those, combined with the extra fluids and rest, will help him to fight these off and regain his energy. He's just....quiet. Not arguing or fussing, but just...quiet. (We never did finish our laps for today. Sigh.)

Much of the day was spent reading The Last of the Great Whangdoodles. (Karen and my mom each took turns as well!) At one point, this evening, I read for over an hour! I felt like the grandpa in The Princess Bride, as I kept checking in with Sam: "are you tired? should I stop now?" Sometimes he would just shake his head, don't stop. Sometimes he would have that glint in his eye, knowing that I was teasing (after all, I wanted to find out the ending too!). And one memorable time, very near the end of the book, he waved his hand at me in a princely fashion, and said, "Proceed."

I seriously threw my head back and laughed. "Proceed"!? It was awesome. Like working for a young emperor. He grinned a huge Cheshire grin, knowing that he'd been a character. And I was so glad to see that Sam-spark. It's there, just hiding a little bit under the quiet and the tired fevers.

So....dear cells, please proceed with your healing.
We'll be here waiting.

From here? Up! {day 12}

After settling into our new room, Uncle Josh and I traded places Friday afternoon and Sam and I settled into a hospital Shabbat, which started with a visit from big brother, David.

With counts of ZERO, there's nowhere to go from here but upwards...with no immunity, of course, we're always worried about possible infections but so far, so good.

Sam spent most of the day walking laps while waiting for David to come back (he had stayed at Bubbie and Zeyde's house overnight)....

...and then hanging out with his big brother.

We also spent a lot of the day reading a new-to-us book, The Last of the Really Great Whangdoodles. Almost every time I asked what he wanted to do next, he asked if I would keep reading. I think we read about 100 pages today! I love when he gets really into a book like that. I'm enjoying it too! Thanks, Jordan and family!

On a break from a lap, giving advice to the nurse playing Wii with another patient.

I am very appreciative of the young lady in the room next door who is recording her laps on the "scoreboard." Sam is feeling a bit competitive, and he keeps trying to "beat the top score." She did 14 yesterday, so we did 15. Today we did 26, a number that Sam came up with to make sure we would beat her. I suggested that we throw down a friendly challenge by knocking on her door but he was worried that she would stay up later than him and then beat him! This all made me giggle...and whatever gets him moving, right?

Isn't it better to do laps with a sword? If you're Sam, of course! With thanks to Samantha Roberts, a US Olympic hopeful in fencing, who sent Sam a cool fencing helmet during round four -- this was in the long mysterious package from the other day. It's a practice foil, made of plastic, people, so no worries. 

Explaining to Anne the best way to do laps...

A little visit from Anne rounded out our day (and it was nice to have someone else take over the reading responsibility for a little while!)

and then Sam just crashed -- he was exhausted and asleep within a few moments of bedtime. What am I saying....he decided that bedtime would be NOW. And so it was.

I think he's medically fine, but he's not totally himself. He's not tearing around the floor, bouncing off the walls, begging to stay up later. There are moments when he's back to his energetic self, but he just seems a little more tired than usual. So we're doing a lot of resting. That's what the hospital is for, right?

And so we rest....and tomorrow is another day...

New room, New view {day 10}

It's a bit odd to write the blog post from afar, but Uncle Josh is on Sam duty so I agreed to take the various texts and pictures that he sent me today and somehow write an update!

Uncle Josh arrived this morning and tagged out Dad, only to find out that there was a leak in the window in the room next to ours. Because fixing the leak might lead to dust, mold, etc, they decided to move Sam to a new room. (Dust and mold are particularly bad for someone without an immune system, of course.)

(Remember that nice east view that I like so much....oh well. The new room is E572.)

Apparently the nurses have done this before:

I'm pretty sure Sam isn't ON the bed with all that stuff.

This new room looks suspiciously like the old one....

 Only messier!

What is IN that strangely shaped package!? 

And the rest of the day was relatively uneventful...spent setting up the room, opening mail, eating, reading, playing...and so we are now in the period known as "awaiting counts recovery."

Which is a fancy way of saying that we're just waiting around for Sam's cells to grow him an immune system. He's in the hospital because he has none -- and that can be dangerous, obviously. People have asked me how much longer he'll be there, and the answer is....we don't exactly know. I keep saying it can be anywhere from 15-20 more days, or even more. We've never done this before. It feels like last time, like the times before, but it's not really. The relapse thing adds a whole new level of worry and fear. It makes the outcome seem so much more....important. Not that last time wasn't important, but there's a different kind of anxiety involved, waiting for THESE counts to recover. Will it happen quickly enough? Will the remission be "good" and will we head directly to transplant? There are so many questions, so many unknown factors, so many things that we just. don't. know.

And so we wait and hope and pray and believe and continue to do all the things that we do to pass the time both in and out of the hospital....awaiting counts recovery.

Ups and downs and Ups {Day 9}

Phyllis suggested I do a list of 10 on the 10 (10th of April). I have less than 10 pictures, but I am sure we did ten things. Nurse M took incredible care of us and always took a moment for some wonderful conversation about movies and books we all love watching. Nurse E2 stopped by even though he wasn't our nurse today. It was incredible to see him and talk about video games and how he's doing. There was a great article and news interview on him today. Everyone does incredible work in this hospital, but not everyone can say they were a patient here, a cancer survivor, and grew up to become a nurse to give back for all the wonderful care he received. We were blessed the entire day with company and care from people we love and adore.

1. Sam woke up this morning in really playful mood, but no mood to get dressed or get out of bed really...

2. Clearly out of bed, but still in PJs, Sam had tutoring with his favorite hospital teacher, Miss T. They worked on some of the really challenging multiplication problems Zayde made and brought yesterday.

3. Finally dressed and embracing an iPad moment for the first time of the day.

4. Bubbe and Zayde came and brought lunch (no pictures available). The Chef sent up his special pancakes with strawberries and Sammy ate off the menu for the first time in a long time!

5. While Daddy took some respite at the gym (and a much needed shower) he arrived back to find Sammy playing soccer with in the hallway with Bubbe and Zayde with our giant Matzah Ball (sorry, no picture)

6. Our good friend Richard from B'nai Torah & Make-A-Wish, came to visit and hang out. He and his family gifted Sammy with some much appreciated iTunes credit which he was very grateful to receive. His dragons were grateful also.

7. Chef stopped by while I was at the gym to check on the results of the great Mac-N-Cheese cook off yesterday. He rewarded Sammy with his own Chef's hat even though his Mac-N-Cheese lost to Phyl's Mac-N-Cheese. Chef said he always loses when this particular dish is the challenge. He lost with grace but earned a great fan in Sammy.

8. Sammy received a couple of amazing packages with gifts for him to keep and share. An amazing R/C truck showed up and some bath toys. An incredible book of shadow art he can practice on the walls at night. An entire folio of letters and pictures from a class of kids taught by an old friend of mama's. Many of the letters are in Spanish so that Sammy can practice his Spanish reading. Sammy was thrilled to open them all and so thankful of the kind gifts, prayers and thoughts from many of our friends.

9. Sammy had some FaceTime with his friend Rosie (no picture). The two giggled and laughed at and with each other as they tried to think of things to talk about. It was such a cute, awkward conversation between friends who are more used to running around a house together and playing rather than having an extended conversation. Sammy showed Rosie a lot of his books and stuff and they giggled a lot.

10. Sammy showed Nurse J the mask he made yesterday during art therapy. She was changing his caps so he wore his surgical mask over his creative mask. It was quite a sight!

Sammy was quite winded after the soccer game. It sort of left him in his down moments for the day. He lagged for a good couple of hours and then sort of recovered at around five. We got some more of Mom's Mac-N-Cheese in him, tucked him into his favorite chair and proceeded to watch the Fantastic Four 1 & 2 back to back. Sammy was thrilled and enthralled and asked a lot of good questions throughout both movies. He ate some popcorn, and some cookies and drank his water. I tucked him in and went to brush my teeth at a little after 9 and returned to the room to find a boy already fast asleep.

Love and gratitude to you all. You give us strength when we need it most.

Family and Friends {Day 8}

Sam had some turbulence during the night (nothing a little anti-nausea meds couldn't handle) and then rested until morning where he woke up bright-eyed and bushy-tailed. Nurse S took amazing care for us throughout the night as he always does and will do tonight. Nurse E was amazing yesterday, so caring and loving to Sam, always so attentive. And today we had the tower of power, Nurse LA, talking Sam up and getting giggles and phrases from him where most people only get monosyllabic answers. Watching the two of them interact is like watching the Odd Couple live together. True love has never been so apparent.

It was a day of adventure with many friends and family visiting. Sam's in-house tutor stopped by and looked at all the math he had been doing with Zayde and me yesterday. Then Bubbe and Zayde showed up just as Phyllis and the kids arrived downstairs. I went to help Phyllis bring the kids up while Bubbe and Zayde entertained Sam for a bit.

Everyone played so nicely enjoying Sammy's amazing spirit and health for the day. Then close to lunch all family members packed up and headed out for a day at the museum. Where they discovered Z really is for Moose!

A few more boxes arrived with some incredible thoughts of love and hilarity. An amazing cookie bouquet, more amazing mustaches, a yodeling pickle, a see-through frog anatomy puzzle and an incredible box of snacks and games.

As we walked out to play some video games, Sam was sidetracked by the amazing Art Therapist who intrigued Sam with the idea of creating his own mask. The three of us talked about Sam, our favorite colors, what we like to paint, draw, create and Sam calmly painted a beautiful mask.

Just as we were finishing the art, Sammy's first grade teacher from Oak Terrace showed up to spend an incredible afternoon talking, teaching and learning with Sam. Sam loved showing Ms. M. all the math and Spanish he had been doing the last few days. The two created a plan for his future work and laughed throughout the time they spent together.

The hospital Chef sent up his entry in the Mac-n-Cheese contest, but Phyl's won out in the end. Chef got Sam to try a few bites before he declared it good, but too cheesy (is there really every such a thing?!! I tried it when he was done, it was good, but definitely too cheesy and buttery compared to Phyllis' famous Mac-n-Cheese. Doc M already has her order in for a future pan to be delivered. Phyllis certainly has her cooking work cut out for her).  Sam thoroughly enjoyed the twizzlers from the large box of snacks, and the cheez-its, the Famous Amos cookies, and is currently chowing down the Pringles. HUGELY successful Snack Box!!! I have to say this is one of the best intake months of chemo for Sam. I think he knows he doesn't have to starve himself and the anti-nausea meds are working their magic.

Towards the end of the day, Dr L stopped by from her dermatology rotation just to hang out. Sam recounted all he had accomplished during the day and showed off his beautiful mask. He impressed her by downing three servings of The Famous Mac-n-Cheese. 

And then we settle in for the night. Brushing our teeth and swishing, shedding the day's clothing for PJs, a last drink of water, some anti-itch cream, and the Shema to sing us gently off to bed. 

The city view is beautiful and silent from up here at night. It is a view of the whole city, the outside world, so close and yet so far away. I know we will get there again, all of us, as a complete family, someday. But up here, you live moment by moment, a minute at a time, an hour at a time, each conversation and project a stepping-stone closer to the end of the day. Each visitor and friend a shining burst of light adding such color to our days. As the lights go dim, and the ambient light fills our room I breathe just a little in amazement at how fast and slow it all seems to go. Thank you for all your blessings in our lives and all the prayers you bathe us in each day. We feel them. They hold us up. They shower Sam with strength and a fortitude even he didn't know he had. They make it possible for us to carry on and be there for you too, and for our caregivers. With all of you supporting us you make each day go a little quicker and seem a little brighter. 

With infinite love and gratitude you I thank you for blessing our lives. 

Bad Night, Worse Morning, Great Day! {Day 7}

After a great day yesterday, Sam spent a restless night fighting a rash caused by his treatments. His skin itched a lot while his nurse and doctors tried to figure out an antihistamine cocktail that might gain him some rest. He spent the night groaning and itching. I spent the night praying. Rest was not to be ours.

Sam seemed to wake up in good spirits at 7 am and then crashed into a my-life-sucks tantrum around 8:30 am. It was agreed during rounds that he should receive blood today since his tantrums are usually an indication that he needs some help maintaining his counts and his good spirits. After rounds I gave Sam a little bit of perspective as he complained how he is the only one in his family to be sick. I asked him if this hospital was empty. I asked him if he saw little kids the size of Solly and smaller on his floor. I asked if this building was empty. I helped him see that while this sucked, he was not the only kid going through this. I explained that hospitals, like this one, are filled with sick and healing children throughout every major metropolitan city in this country. I talked about countries that don't have hospitals like this where children get sick and die simply because they can't get clean drinking water. I explained that not everyone has siblings that are perfect matches to help them get better. I held up his blessings and I held up some of the scourges of life on this planet. With tears rolling down my face I held up a mirror of reality so that he might see the difference between life sucking temporarily and what real unfairness looks like in this world. I'm not sure if it was my speech or my tears that quieted him down. Maybe the meds just kicked in and the itching just stopped.

(ok that's only sort of what he looked like this morning. 

Really that is just a great face he made when he lost a point during our amazing Wii tennis match)

And then Bubbe and Zayde arrived with some superfood for Superman Sam. (We ran out of mac and cheese.) We ate, and talked. Sam wasn't thrilled with the lack of math problems he received in his homework from school. First I created a few pages of math problems. Then I had him write me a story in Spanish. When my math problems didn't prove challenging enough Sam had Zayde create another page of math problems and when those were done and Bubbe and Zayde had to go, Sam had me make a more challenging set of math problems just like Zayde's set.

While waiting for blood to arrive to help Sam's counts and hemoglobin Sam had rebounded so much that he was up for some Wii tennis. First he played by himself. Then when he was ready to crush his dear old dad, he invited me into the game. Connors and McEnroe would have been proud. Sammy was so joyous you would have thought his evil twin had taken his place briefly this morning. But this is how it goes when you've been away for five months and forget symptoms of a body's progression through chemotherapy. It is what it is.

In the midst of our major tennis matches downstairs called to inform me that the mail delivery person was simply coming directly to our room to drop off the 23 packages that arrived today. You all really know how to make a little guy feel loved (or at least showered in gifts and prizes to try to distract his geographical awareness from remembering that he is living in the hospital once again). And let me tell you it worked.

Sam devoured his gifts as if he'd never received anything before in his lifetime. He was like a kid on his birthday or Erev Chanukah. He got amazing books and gadgets from Rabbis all over the land. He got a wonderful D.A.R.E. kit from Chief Rotella of the Upper Saddle River Police Dept. with pictures of their really cool D.A.R.E. Truck. Some of my other kids still have D.A.R.E. shirts from when Asst. Chief Cuozzo was D.A.R.E. cop in Orange, CT. Battle of the Departments! I feel a softball tournament  in our future to raise money for cancer! NJ vs CT perhaps? I know training for Marathons is more Chief Rotella's style but departments joining forces to battle cancer can't be a bad thing. Support your local officers!

It also helps to know a famous young adult and children's books author. My friend, Erica Perl, sent two signed copies of her incredible books for Sam to enjoy. It was so warming to think of a friendship reunited after 28 years being honored in such fashion (THANKS NeFTY! Still paying dividends after all these years).

But really, gift after gift, they were all so incredible. We know it isn't all about gifts, but Sammy still takes such pleasure in both receiving the gifts and in choosing what presents he will share with the rest of the kids in the hospital. He could clearly tell that the girl books were meant for both his sister, Yael, as well as for girls here in the hospital also trying to get better (He was pretty sure the glitter nail polish set was for Solly's pink toe nails). His mother was sure that the Michigan T-Shirt was for some other family in an entirely different state. 

This incredible collection of t-shirts of all superman shapes and sizes (socks and a hat too!) came all the way from DENMARK!! Sam is excited to share the clothing with his family and other kids in the hospital. 

One large box contained almost 100 individual books and items for Sam and kids here at Children's Hospital. 

When emptying the box it seemed like Hermione's handbag in Harry Potter 7, bottomless. It had room for everything needed. Countless books and games for boys and girls of all ages. It was incredible to behold and so overwhelmingly generous.

And upon completion of unpacking everything Sammy dug in to build a wood model airplane (once the nurses procured a screw driver for him).

This took us into early evening, to dinner time, movie time, a happy, go lucky Sammy who seemed to lose all his cares about being in the hospital once again. A gracious, rambunctious and funny kid, the furthest place away from the unhappy tantrum throwing kid who greeted me this morning. 

He was comfortable for the first time in days. At ease with himself and all the nurses. Giggling, playing and just enjoying the amazingness of it all. He was my son, back from the brink chemo often takes him to. Back for a day of being grateful he is loved by friends and family alike. So thank you, all of you (you know who you all are! Yes, you, the ones we probably told gifts weren't necessary, but you ignored us anyway). Thank you with my eternal gratitude for being so amazing, so generous and so loving. The names didn't track with Sammy who didn't recognize most of them. But they meant the world to Phyllis and I who can't believe sometimes how truly blessed we are to have you all in our lives. 

Thank you. 

My best friends...Mac & Cheese {Day 6}

It was a rough night. Sam fell asleep at 7:30 pm for what I thought was the night, and then woke up bright-eyed and bushy-tailed at 9:30 pm. He was very frustrated at 11 when he still wasn't tired. I was frustrated with the whining. "Sam, accept that you aren't tired and let's move on from there to plan all the mayhem and madness we might experience!"

We read Z is for Moose (MY NEW FAVORITE BOOK EVER!) and watched a little screen. Finally at around midnight Sam was ready to try once more and a small bribe didn't hurt to give him incentive to close his eyes and relax. He grumped here and there throughout the night, but I just rolled over since none of his grumping needed immediate attention. I was amazed when, at 8:30am, he piped up in his sweet voice "Hello, is anyone else awake in here?" Usually I would pray to sleep late, but for Sam it meant that his body was recovering if he was awake so late and up so early without being exhausted. He didn't even need a nap all day (no, I did).

His best friends in the world in the hospital, his mama's Mac & Cheese, sustained Sam all day. From breakfast, to snack, to lunch, back to snack and finally to dinner, Sam asked if his two best friends would dine with him all day. Sam ate like a real trouper and kept it all down. Real good signs even though he claimed to be too nauseous to walk around the unit.

Grandma came mid-day and Bubbe and Zayde arrived a little while after. Sam worked with Grandma drawing a book together. Sam has become an incredible freehand artist. He was very disappointed when some of his pages ripped when he tried to remove them from his book. This turned into thirty minutes of tantrum hell as a hunger crash accompanied this set back. With food and some incentive, I was able to coax Sam literally back to the drawing board. He preceded to render Eric Winter's vision of a snail just by looking at a copy of Alef is for Alien.

Sam never ceases to amaze me. The Gargantuan continues to frustrate him as he tries to draw the alien from Gimel is for Gadol. 

I was told I was remiss for not including the "Hair today goon tomorrow" photos except for my favorite mohawk shot yesterday. I claimed artistic license, but was called out on the fact that I just plain forgot to include them. 

Here of course is my favorite image of Sam and how I think his hair should look all the time, even when he accepts his diploma from Harvard Law School someday (a father must dream!). 

The shearing continued of my young sheep as his glorious hair fell to the floor. Sam didn't believe me, but in five months no scissors touched his hair and it grew to the longest it's ever been in his life. It came in wavy and curly and allowed him to play with it and style it when it was wet.

A picture from the curly-hair-days not too long ago...

He took such joy in being able to play with it and make it do his bidding.

And yet his soul shines whether bedecked with hair King David would have been jealous of or shorn like a fresh recruit for the Navy Seals (he truly believes he will grow up to be a Ninja if he watches enough of Disney XD's Kickin' It on Netflix ...Netflix has truly saved us on this endeavor. Sammy turns down almost every movie I bring back from the HOT Unit's secret closet. I swear he wants me to bring him Disney/Pixar movies that haven't been made yet as if I have some super powers to do such a thing.) 

Sammy's Howie Mandel sense of humor is always en fuego when he's up for it. He is a comedian, an actor, a singer and a dancer on his best days. And of course Uncle Josh could not go unscathed. Payment must be made for Sam's locks to fall from his head uncontested. The price, all of Josh's facial hair in exchange for Sam's peaceful acquiescence (better than arm hair like last time). 

A small price to pay when victory is so close at hand:

Sam's imagination and grasp of the world astounds me and leaves me speechless. He brightens our world almost every day (except when he's throwing a raging tantrum about not being able to sleep or due to accidentally ripped pieces of art work). He serenades me right now with his victory song as he crushes the legions of soldiers in Stick War 3. I wish you could all hear his victory song. Until I really thought about it just now, he's been singing for about fifteen minutes straight while playing. He's also reading all instructions out loud to himself. 

And thus day 6 draws to a close. I am hoping Sam sleeps better tonight than he did last night. No itching or rash today. One less nausea med than yesterday. One day further along in the latest chemo regimen, and one day closer to the all powerful Bone Marrow Transplant. Dr. M and I had a wonderful conversation today. I assured him that I only sleep well at night because I know that he is part of our family's team. During this travel through hell, Sam, my family and I are always surrounded by what we believe to be the greatest angels ever trained in medicine. And so we rest for one more night in Base Camp Milwaukee blanketed in all your love and prayers.