Biggest Box Ever!

And (wait for the disappointment) no picture. House cleaning came before I remembered to photograph the size of the box (must be all things New Jersey come in one size HUGE!!!). Needless to say it looked to have been a three by two box from the Upper Saddle River New Jersey Leukemia & Lymphoma marathon team.
Dan, a friend from high school, told his team about Sam and they made him an honorary team member. From the chief of police and a fireman, to a future fencing Olympian and her mom, all members of the team filled this box with love, prayers, support and a myriad of really cool gifts and running medals. Sam nearly lost his mind with glee and awe.
Samantha (the future Olympian) actually sent Sam one of her fencing helmets signed by her. The chief of police made Sam an honorary officer of the law. All in all I think Sam just found his future profession and his collegiate sport. He LOVES sword fighting so I am sure he will love fencing.
People continue to amaze me with their unconditional love and support. Thank you all. You make the days fly and fill the moments with sheer amazement. You have my eternal gratitude and Sam's undying love.

Normalcy in Isolation

We are so thankful isolation doesn't mean no visitors. Today Adam and Melissa stopped by on their way home from the Dells at the same time Bubbie came to visit. We sat around and ate lunch as Adam and Sam swapped Star Wars story ideas.

While Sam woke up in a bit of a sugar low slump he rallied, ate a good breakfast and watched Ghostbusters for the first time. He enjoyed it even though he didn't understand all of it, especially the moments of animosity and ironic asides of Bill Murray's character. (Phyl's comment: thanks to everyone for the lists of movies, we're having fun making choices!)

Sam's legs were worn out from all the Wii exercise he got on Sunday so he took a day off from training for the Wii ultra marathon. We downloaded a new Spiderman app, FaceTimed with David, Yael, Solly and later with Jess. Sam loved talking with his siblings. He can't wait for mom to bring up David for a visit tomorrow, only his second one in four weeks.

Sam's stomach is settling down to normal and he seems to be back to his old snarky self. This is good, but very exhausting after getting up during the night for all his individual beeps, bells and whistles.

Our life rolls on even of we are locked in this small space. The iPads, Internet, television and art projects all make it feel like our world is larger than the walls that surround us (it doesn't hurt that we have an amazing view of downtown Milwaukee out our huge window).

Your letters, prayers, pictures and gifts continue to make Sammy's day each time they arrive. He loves knowing how many of you think about him and love him in this world. He still wishes he was home, but is resigned to making the best of his time here in his other life.

Love and gratitude to you all from normal in isolation.

Counts bottoming out...Spirits soaring

This time of Sam's month scares me except when I see my six year old bouncing around the room as if having a compromised immune system was completely normal. Numbers mean nothing to him this month. His care and his response to his care have been so exceptional that you almost forget what the chemo has done to his immune system.

The C.diff is slowly but surely leaving his system and allowing him time away from his best friend john. He is eating pretty well even if he can't find hospital food he likes. He had delicious vanilla egg challah from Breadsmith all day and loved it. For dinner he ate the last serving of his Mom's famous Mac-n-cheese.

Just before lunch Sam had a surprise guest straight from an hour-long shower to wash the grunge of six weeks of Olin Sang Ruby Union Institute off of his body. When David walked in Sam let out a huge shout of joy, love and wonder at seeing his brother. Sam showed David his new room, the new pictures and some of his new stuff.

Both brothers loved being in the same space after the longest separation in their lives.

In the afternoon our friend Ami visited. Sam and Ami played Wii Fit Plus for over an hour. Sam showed her the bubble game he had perfected, snow ball fight and penguin fishing. When Ami was starving and had to go Sam had no idea why I was turning it off or why he was throwing a tantrum trying to convince me he wasn't hungry or thirsty. "Um... Sam, you've been exercising for an hour. If you eat something you might just stop yelling at me." One sugar crash later Sam was back to his sweet self.

Together we did some sticker projects decorating robots in need of some bling. We colored. We played some of the new iPad apps we downloaded. We watched a movie after Sam's bath and dressing change. We colored his Jungle Felt poster and yelled for joy when cousin Dan arrived. Dan and Sam finished coloring the poster as Sam told Dan all about his amazing day.

Hearing Sam tell it you would never know he was a kid with a white blood cell count of .9, a red blood cell count of 3.65 and a platelet count of 9. He was a happy beast all day in attitude, humor, stories, questions, teasing his nurses and regaling them with tales of wonder. He never stopped up until the moment I turned the lights off at 9:30. He talked up to the final minute and then was out like the light, quiet and resting at last.

I am most blessed with days like these. I am grateful for all the medical staff is doing to keep Sam at these levels even at his worst. I am thankful that Sam his owning his existence and doing his best to stay positive despite all that is happening. And my gratitude is endless for everyone who is praying and keeping us in their thoughts. I know Sam is having a great go of it because all our prayers are working and because he is truly a man of steel and one of the strongest men in the world. He teaches me about life everyday and makes me pray that I can be that strong someday too.

Surreal Hospital Fun

Today was a lovely day.

And it sounds so very strange to say that.

After all, we are in the hospital!

Sam's counts are very low. But since he had blood yesterday, his energy level was pretty good. (If you or I had the platelet or hemoglobin count that he does....I don't think we would spend an hour and a half playing Wii with quite the same vigor.)

We bounced from activity to activity. Most of them felt perfectly "normal" for a six-year-old.

Playing Wii - Sam is determined to beat Dad's score in the ski jump...it took a lot of coaching.

Using Zeyde's binoculars to check out the garbage cans below (we tried to look at the Air Show too) and getting IV'd up at the same time.

And as we did whatever, occasionally a nurse would come in and perform some medical action. We barely noticed. Our nurse today was a real trooper - she followed Sam around the room to hook him up, unhook him, check his temperature, take his blood pressure....she dodged the Wii remote and looked out the window at the Air Show. She commented on what we were doing and asked questions...but for the most part, we were left alone. (Oh, and she asked about challah, which she'd never tasted. So we shared.)

One of the residents came by to say hello, and ended up spending a few hours (!) hanging out in our room, working on her reports. We fed her Pirate Booty (she'd never had it?!) and taught her some Hebrew and sign language words. Then Sam showed her videos of Solly and a few that he'd made of himself!

Sam and Dr. L

I think Sam felt the surreal nature of the day too. At one point, we were sitting on the couch playing Draw Something. The nurse came to take Sam's vitals and he insisted that if he had to be bothered, we did too. So she took not only Sam's pulse-oxygen level, but Karen's and mine as well! It just seemed like a lazy Saturday spent hanging out.

Taking pulse-ox (Karen's score was 99!)

Helping Sam with Draw Something. I help him to spell and read the words. It's a great teaching tool.

It's hard to believe that today was the 19th day in the hospital. We've been in isolation since last Thursday, and we could have 10+ more days in the hospital.

If only every day was like today....

#10on10 - Day in the Life of Sam's Room

There's an internet "tradition" to post #10on10 - ten pictures taken over ten consecutive hours on the 10th day of the month. So I thought I'd do that today in Sam's room to show you an hour-by-hour look at our day.

8:30am - Sam is still sleeping. How cute is this foot?

9:30am - Sam is *still* sleeping so I'm drinking my coffee and catching up on some work.

10:30am - I made the PERFECT cup of hot (very lukewarm) chocolate for Sam.

11:30am - Bathtime! Even hospital-bound kids get dirty. Well, at least their moms think they need regular bathing.

12:30pm - cousin Ricky came to visit and he brought his friend the flute. Sam loved it. Loved it. Asked insightful and interesting questions and I think he might want to learn to play the flute. That's what comes from being a musical family. Also, he got a little lesson in family history - who is related to whom? (Ricky is my dad's first cousin. His dad is my great-uncle and my Bubbie's baby brother. Try explaining all of that to a 6-year-old. Actually, we didn't do so badly!)

(is it cheating to take three pictures and count them as one?)

1:30pm - a little rest and Looney Tunes-watching

2:30pm - a visit from Charlie and a little FastTrack

3:30pm Dr. Cullen* came to visit and brought Sam a blood transfusion

*If you're not a Twilight fan, this will mean nothing to you.

4:30pm - Tuckered out and watching the original Pink Panther movie (from the 1960s...not exactly what Sam thought he was getting!)

5:30pm - Bubbie and Zeyde arrived to celebrate Shabbat with us. Sam is still watching Pink Panther and Zeyde is now interpreting for him. Whew. I'm saved from trying to follow the movie AND explain it to Sam!

And that's our August 10th. Wishing you a Shabbat filled with blessing and peace. Thanks for being part of our team...thanks for being out there for us. We feel the love.

Silver Linings

When we last left our hero, he had requested macaroni and cheese.
Made by his mama.
Outcome? Success!

There are many ways to get a kid to move around. He's not the most meditative child, he prefers to move quickly and with flair. But I've gotten him to do a little bit of yoga with me a couple of times. Today, however, he had a little audience (Bubbie and Zeyde and Karen) and so he hammed it up. I love that he has the energy and spark to ham it up.

The Wisconsin State Fair is quite a tradition. I know that all state fairs have the whole fried-food thing going for them (and also the bacon-wrapped stuff, so I hear, but I tend to avoid that...go figure). But the Wisconsin State Fair has the cream puffs.

There are some interesting things that happen in a children's hospital. They try so hard to come up with ways to bring the fun and games to the kids. So they brought the Wisconsin State Fair here! Even though Sam is still in isolation, I was able to go downstairs and check it out. I took a few videos so that Sam could see what was going on...there were jugglers and musicians, games and prizes. And, of course, FOOD. There were corn dogs and popcorn and....cream puffs. I love the State Fair, I've always loved it. Sam has never been, of course, and he was reluctant to try the sweet treats. He was not impressed. It was a sweet and wonderful reminder of the real world. Next year? We're all going to the Fair. And to camp. And to the pool. And to the beach and to Green Lake and Green Bay and Summerfest and everywhere. And the silver lining is that we will enjoy them even more after a summer spent in the hospital, right?

Why do they use the term "cream puff" to describe weakling? Half of a cream puff laid me out!

One of Karen's specialties is bringing great books for Sam. He loves the Elephant and Piggie series and the Scaredy Squirrel - so today she brought a stack of both! (from the library, of course!) We all laughed out loud at these fun and silly books. But no one enjoyed himself more than Zeyde, who is now a big fan of both sets!

Yes, he is reading this Scaredy Squirrel book to himself.

Reading to Sam, and the best part is that his reading is also picking up nicely! But everyone likes to be read to, right?

And of course Zeyde got a turn with the funny books too!

The wonderful Tatelli family, after much family discussion, decided that Sam could spend some of his isolation time learning magic...and they sent him a wonderful magic kit! He spent quite a bit of time today practicing his technique.

"This box came from my great-great-grandfather and it has magical properties...."

A video will be coming soon with his "performance"....

Sam is tired easily. It was interesting to see how quickly he went from interested in each activity to resting. In contrast to the first round of chemo, though, he didn't hesitate to tell me he needed a little rest, and he took frequent lay-in-his-bed-breaks that were mostly timed by how many episodes of Pink Panther he would watch. (Everything is a negotiation....today he watched 7.) I can't explain just how impressed and proud I am of the way that he is handling the isolation, the oral meds, the discomfort...all of it. My little trooper. He IS my silver lining.

Medical stuff:

- still have C.Diff. It is responding well to treatment but not gone yet. Thank you to so many people who have made suggestions. This is a really common problem in leukemia patients, so they tell me, and although it is a hospital "superbug" I think that it has been a regular problem in leukemia treatment for quite some time...we just have to get through it. It just takes time to heal....

Silver lining: Sam has become a champion at taking meds by mouth. This has been a huge hurdle for him since we got to the hospital and someone told him that once he had a central line, he wouldn't have to take anything orally. Oops. Lesson learned. Sam remembers e.v.e.r.y.t.h.i.n.g. I'm so impressed each time he just swallows down the medicine without much of a peep. Whew!

- Sam's ANC today was about a 6. As far as I know, it will continue all the way down to zero, and then we build it back up. I wish there was a magic build-up tonic that he could take, but there isn't.

Silver lining: Things are doing exactly what they have to do.

And so are we.

Catering

Literally.

Sam has been asking for my macaroni and cheese for quite some time. I've run through many many many different kinds of mac and cheese to substitute.

Sunset Foods, a local grocery store (a close second, by the way)
Kraft - instant, frozen, freeze dried....I'm sure I missed a variety of Kraft.
Annie's - instant packets AND cups
Trader Joe's frozen
Hospital food service
Cafe West, the hospital cafe in the lobby
Various local restaurants around Milwaukee

I even gave the recipe to Karen and she tried to replicate it.

No dice.

Do you think he's playing me?

Either way...I made mac and cheese tonight. To take to the hospital tomorrow. Mama Phyl's Catering Company at your service.

Good thing he's cute.

--

Medical updates:

Still in isolation. Trying out many of your suggestions. Looking forward to trying more!

Counts are dropping as expected ad we are hoping to "bottom out" soon so he can start the slow climb back to an immune system. Today is day 15.

Sam's spirits are high and frankly this is what I care about the most. I love that he is smiling and snappy with his comebacks. (we value a good snappy comeback in our family)

We continue to be so very blessed.