Saturday, June 30, 2012

Normal in Cancerland

Welcome to Cancerland, where a five-day fever buys you a CT scan. Perfectly normal.

Welcome to Cancerland, where the Child Life specialist is a master of the clippers.

Welcome to Cancerland, where the days and nights can get mixed up because of the timing of the beeping and vital-checking.

Sigh. I definitely don't remember getting my tickets but we have arrived.

On Friday...waiting for the CT scan. Yes, he is cuddling with his water cup.

This is what a CT scan looks like. It makes quite a bit of noise too. Luckily, it went very quickly.
 The CT scan showed a little inflammation of the intestines, which is, (drumroll) quite normal in Cancerland. So we are now on IV nutrition to give his body a little rest from food, if he wants. He can still eat while on it. Plus a little extra morphine drip to help with pain management. Which might help with mood management as well. Is there a morphine drip for the mama and papa?
Changing over from a one-tower pole to a twin-tower pole. Luckily Sam didn't really notice how it grew.
 Sam's hair started falling out (normal in Cancerland). He didn't really want to shave it even though there was hair everywhere (also, by the way, often normal in ChildCancerland. It's all about control.) This is a negotiation session in which Sam is shaving Uncle Josh's hand. With the clippers. That man is a saint.

Eventually he let Sam shave his whole arm in exchange for a head-shave.
And here's the finished product. Yes, he has two sets of eyebrows now. That's how he wanted it.
Would YOU argue?
I actually think he looks adorable. Except when making faces like this one.

Friday, June 29, 2012

Feeling the Guilt of Living

My cousin wanted to get my brother and I out of the house to let some of the weekly stress roll off. He wanted to see a movie. I put my guilt aside, got a baby sitter and did my best to feel ok with taking care of myself.
It didn't help that Sammy had an awful day, was grumpy, losing his hair and made me feel like jumping in a car and rushing to see him just to tell him "being follicle challenged isn't all that bad (yeah right and the hair for men club makes a profit how?)! I just wanted to hold my kid. I didn't really want to go out, but I love going out with my cousin Dan and brother and we probably needed it more than I'd like to admit.
Movie was great. We get home and I find version 1.5 (Solly) sitting gleefully in my babysitter's lap at 10pm with David and Yael awake upstairs complaining that they couldn't sleep. Solly gives us a big smile and yells "Dan!". He totally snowed the babysitter with the "I'm going to cry a lot until you come get me" routine. Worked like a charm.
I pay the babysitter, had Solly kiss everyone goodnight and go put him back to bed. Solly had different plans. He proceeded to scream on an off for two hours. I sat with him, fed him, tried to sleep on the bed in his room, volunteered him for the French Foreign Legion, and called the nearest zoo to see if they needed any monkey washers. I'd had enough. Parenting on top of worrying about my Sammy all day? That was asking way too much.
Eventually I sat with him in my lap in the dark while talking for thirty minutes. I tried my best to clear my mind of all thoughts. Then I scooped him up, put him down, he complained for a bit and finally settled down for the night.
I'm lucky his memory is short. He woke up as fresh as ever calling "abba, abba" in the sweet morning light and all was forgiven (for the most part).

Thursday, June 28, 2012

Hair Here Hair There

While today started out well, it had a few rough patches.

And the doctors and nurses are so wonderfully kind to remind me that these ups and downs are to be expected.

But that doesn't make it any easier when Sam shows me his pillow, covered in little hairs. Yep, that's right, his hair is falling out.

"So let's shave it off!" I say, to my child who has always asked for his buzz cut to be shorter and shorter.

"No. I don't want to be bald."


"It will grow back."
"It will look great."
"You'll look just like Uncle Josh."
"We can decorate your head."

None of those worked.

And the hair kept falling out...into his eyes and his mouth and all over the pillow.
He wouldn't take a shower to wash it away.
He didn't really find a hat that was comfortable to help keep the hair out of his face.
And he wouldn't let me shave it.
He was generally disagreeable all day long.
And who can blame him? I don't want to give up my hair either.
(Which, by the way, is a different project in the works for the future...stay tuned.)

Finally he agreed that tomorrow when Uncle Josh arrives, head-shaving can commence.
Until then....a little bit of extra itching won't hurt him.

More blood transfusion today...more pain meds....a few happy visitors and a lot of just hanging around. Here's hoping for a better tomorrow.


In other news, Bubbie and Zeyde and Grandma have embarked on a project of their own.

Perhaps you've heard that Stephen Colbert wrote a book?
If you'll recall, Zeyde read it to Sam a little while back:
 So now they are sending this picture of Sam and his Pole
to Stephen Colbert.

Think he'll get a kick out of our little Superman Sam? Maybe we can get Stephen Colbert to pitch for bone marrow registry. It's one thing when Good Morning America does it. (Yes, that is Children's Hospital of Wisconsin and our friend Dr. Dave!)

Wednesday, June 27, 2012

Questions Asked and Answered

Some burning questions that have come up....and some answers... (in no particular order)

What's up with the Popsicle sign?
Part of Sam's "wall"
Sam does not like popsicles. I know that seems a bit odd, since most children do, but he does not. On our first time in the hospital, in the emergency room, they offered him popsicles many times. He usually responded with "no" or "no, thank you." As we were being discharged, the kind nurse said, "would you like a popsicle for the ride home?" and with gritted teeth, Sam replied, "I. hate. popsicles." So Uncle Josh made him a sign. So no one, however well-meaning, would offer him a popsicle. (Unless Uncle Josh is there. Then all popsicles can be given to him.)

Why the Superhero theme?

Many people in the hospital were trying to encourage him out of his initial pain and general funk at being in the hospital (no kidding) and often called him "superman Sam." He does like superheroes, but it's not an obsession. But as Tante Anne says, "everyone likes a gimmick." I didn't mean to start a gimmick, per se, but it seemed to be a good name for my little superman. Sam likes bugs and frogs and turtles and animals and (angry) birds and games and puzzles and books...but he is using up a lot of his energy on healing. Being in the hospital is hard work. He really does seem to have superpowers.

Why are you in Milwaukee if you live in Chicago?

Much of that was answered in this post, but the short answer is that Children's Memorial Hospital was moving to its new location on the day that we went to the hospital for the first time. We were sent up here instead and since I'm from Milwaukee, it seemed to make a lot of sense. We have a great team in place here.

Can I send him a package?

You can. But can also hold off. We are so very blessed to have an enormous, loving community. THANK YOU for everything so far, and we know for everything in the future. All the staff at the front desk know who Sam is because he is the kid who gets a LOT of mail. So if you are thinking of sending him a package....maybe wait a month or so. This is going to be a long haul.

Which leads me to....
How long will you be in the hospital?

Sam has AML, which is a trickier form of childhood leukemia than the more common ALL. (Feel free to google, but like I said, don't tell me.) The course of treatment is approximately one month of inpatient treatment (10 days chemo followed by about 25 days of inpatient observation to recover his counts). Then we will have a short break, and start again, for another month-ish. (Assuming that all goes well.) Somewhere in there, we will find out if Sam is in need of a bone marrow transplant. So far, they just don't know.  This is all subject to change based on how Sam responds to treatment. Typically, without bone marrow transplant, there are four rounds of chemo. With bone marrow transplant? Well, I haven't asked. Because frankly, that scares me.

What do you need?

Right now? We don't need anything tangible. We are so grateful for the meals and assistance at home. They are wonderful and helpful. The nurses are handling our needs at the hospital. Sam needs time and patience. We may need more in the future. We continue to need your love and supportive messages, cards, letters, calls, etc! They are amazing and helpful and we love them. I personally like the joke texts...even the inappropriate ones that I can't share with Sammy.

So what could we do if we must do something?

So many people want to help us and we are so appreciative.
Thank you. You mean everything to us.
Please feel free to contact Am Shalom 847-835-4800 or B'nai Torah 847-433-7100.
There's a bone marrow/blood drive on Thursday (tomorrow) at Am Shalom. Go to for more details.

Prayers help too.
Sam's Hebrew name is Shmuel Asher ben haRav Pesah Esther
Pray in whatever language you know and love. God will understand.

Sam is in a world-class facility, the Children's Hospital of Wisconsin.
If you are interested in making donations of money or items to the hospital, here is their wish list. If you're looking for a project, here is their "Create a Project" idea sheet. (This is one of my favorite mitzvah projects to suggest to kids...I never quite imagined that we would receive these kinds of things!) I'm sure we could come up with countless other projects too. I know that many Bar and Bat Mitzvah students at Am Shalom and B'nai Torah (and probably other synagogues too) are on the case.

We are being hosted by the Ronald McDonald House of Milwaukee.
It is a gorgeous facility. I have, in the past, brought meals to RMH in other cities, and it's a wonderful mitzvah. This RMH has a wish list. We are truly blessed to have so many people who want to help us, and we want to make sure that you know how lucky we are to extend our love to the RMH and the other families who are there as well. What an amazing place.

Other incredible people are doing Relay for Life or Team in Training in Sam's honor or any other number of things to raise money and awareness for leukemia (I don't even know!). Register to be a bone marrow donor. Give blood or platelets. These things might not help Sam directly but they do mean a LOT to us and I know that they will help someone. We are so honored and amazed at everything that is being done. Thank you.

How are the other kids?

They are doing okay. David is very excited to head off to OSRUI for six weeks starting on Monday. I thought for a brief second about giving you all his address but considering the outpouring for Sam, I can't imagine that OSRUI's mailroom could handle it. Yael is loving her daycamp and Solly is...Solly. David is learning a lot about leukemia and asking a lot of questions, and Yael just misses her best friend. There are posts about the other kids on my regular blog.

How are you?

We are okay. There's a lot of back and forth between the hospital and home. There's a lot of communicating that happens via text message and FaceTime. We miss each other. We miss our family togetherness. We are sad that we won't be going to camp together this year. We are sad that our summer isn't the summer we had envisioned. We are praying for Sam and holding faith in our team of doctors and nurses and other health people - each and every day we are focusing on healing and keeping it all together. We are trying not to be scared and trying to focus on positive outcomes. We take it day by day. Or hour by hour. Or sometimes even moment by moment. We are still dreaming and planning and breathing....

Other questions will be answered as they come up ;-)

Home and Away

Have you ever worked at summer camp?

You know how it feels to take a day off from camp?

You leave camp, kinda grungy and dirty, with a bag full of dirty laundry and many plans for rest and relaxation....maybe a special event or something fun planned, like a concert.

You get home, and you feel a little lost. You find yourself waking up early and then checking your watch. "Oh, they're at swimming right now," you say to yourself. "Oh, now it's time for lunch. I wonder what they're having." You move around in your regular space, your home, and you feel a little odd. The carpet feels strange against your bare feet. The shower is a little too clean. There are too many choices in the refrigerator. It's a little too quiet in your room without the rest of your cabinmates rustling around. But it's good to be back. It's good to hug your family and see your non-camp buddies. It's good to go to your favorite local restaurant.

It's good to be home. But you miss camp.

And then it's time to go back.

You come back to camp, scrubbed clean, with a bag full of sparkling clean, neatly folded laundry. You have a few new t-shirts, maybe a pedicure, and you are well-rested, full of energy. And you walk back in and breathe the camp air, and it feels like home. Like you never left. Within a few minutes you're sweaty and hot, a little more tired, and your campers are clamoring for your attention...and you love it. (And every so often, you wonder what is going on back at home...who's going out, who's meeting at the street fair that you're missing...)

It's good to be at camp.
But you miss home.

That's a little bit what it felt like for me to be home for the last few days. I kept wondering what Sam was doing. I kept thinking about how things were going here, and I was updated via phone calls and text messages and pictures and FaceTime. Things mostly went well here at the hospital, and I was trying really hard to pay attention.

But I was also at home. And I was trying to pay attention there too. To my David and Yael and my family and friends who were so helpful and wonderful and caring.

Wherever my family home.
Here and there.
So I'm back at home in the hospital with Sam.

And the rest of my heart is back at home in Highwood.

Sigh....and so we go on.


Update from pictures. (There was a lot of resting and napping today, but in the few hours that Sam felt well, here's what happened!)

My friend Craig Taubman sent us these noses. I think every hospital room might need some noses. (Thanks, Craig!)
Even Dr. Tower wore a nose. Such a good sport. We decided that he needed to have it in his repertoire. Sam suggested a matching wig.

Sam got a LOT of mail. This was one of my favorite packages. Thanks, Tiferet. (Tiferet is the Arts Unit at OSRUI.)

We took a walk and found a nice couch to sit on and I read a bunch of books. This one was an encyclopedic look at frogs. Sam loves frogs.
And a conversation with Uncle Josh. They are discussing his beard-shaving...can't wait for that to happen!
And that's the report from E571. So good.
(Post coming soon with answers to many pressing questions. Stay tuned.)

The quiet of a still house. . .

It feels strange to just be sitting in a quiet and still house. Yael is at day camp, David is reading and playing with Siri voice commands on his ipod while Solomon is napping soundly upstairs. Something is wrong when calm feels abnormal and awkward.

Tuesday, June 26, 2012

A Grumpy Start, the magical nurses and Team Jerseys

After quite a restful night Sam woke up a little before seven. He had the grumpy "I'm hungry" look on his face, but he wasn't in the mood for food yet, and that was good because room service wasn't open until seven. At seven I ordered him a yogurt smoothie (which he has taken a real shine to) and tried to get him into a good mood. His favorite nemesis, I mean nurse, LA showed up with her trusty side kick, I mean wonderful intern R. The battle ensued. They brought their best arsenal of smiles, jokes, threatened tickles. Sam did his best to frown, hide his laughter and duck his head under his blanket to avoid morning vitals. Vitals accomplished, the dynamic duo fled our chicken coop. They left behind a struggling-to-frown child trying to hide that he just saw two friends he refuses to admit he loves in his own six-year-old way. Sam devoured his yogurt smoothie, a smile on his face, watched a little morning Fairly Odd Parents and proceeded to eat an entire bag of popcorn from the night before.

   The art of being an incredible pediatric nurse, doctor, caregiver, or anyone else working at a children's  hospital is a skill to be prized above all others. It takes a chosen few who dedicate their lives to caring for our most prized possession, working with parents at their wits ends and children fearful of all they don't understand. They do their best to minimize the pain and humanize an experience that is an alien world to all who enter it. They all have my undying gratitude and love.

   Apparently you can't have be a super hero without a theme song or have a team without uniforms. Sam had two incredible visitors today. My incredible friend and colleague, Rabbi Andrea Cosnowsky, stopped by just to sing a few songs for Sam and tell him about his personal theme song she is writing for him. Sam was so inspired by the songs he took a walk with us downstairs to see his friend Jacob, Rabbi Andrea's oldest son.
Rabbi Andrea working on my Super Hero Theme Song!

After lunch Rabbi Steven Lowenstein showed up to show the work he'd done on Sam's team attire. If there's anything we all know about Rabbi Steve it is that he LOVES designing team jerseys.
Team Sam Hats and T-shirts!
And we all know that every Super Hero needs a disguise to hide their secret identity.
Rabbi Steve Thinks of Everything!
   Completely outfitted and disguised Sam proceeded to enjoy most of the rest of his day and an entire fresh peach. After his bath, which was uneventful, it turned out that his aquaguard (waterproof cover for central line) was stuck right to his central line dressing (ARG!@#@%$@!!!). Our nurses, LA and R, were busy. I watched on eggshells as my Sam assisted the charge nurse with removing all the sticky dressings of his central line while trying to wear gloves that didn't fit and a mask that kept slipping. I wanted to crawl out of my existence with concern and frustration. I had asked for help applying the aquaguard and we had adhered it too low.

Sam was frustrated by his slipping mask, but amazing as he slowly removed all the adhesive protecting his central line. He then gritted his teeth as our charge nurse cleansed and prepped the area and applied the new adhesive guards and protective shield.

   This half hour threw Sam back into his grumpy "I hate this place" mood. He slowly crawled into his reclining chair and asked for me to unpause the movie he was watching (Big Miracle). I handed him his water and a new bag of popcorn. Slowly the food worked its way into his system and his anger subsided just before Uncle Josh made his appearance for the night. Sam's mood returned to the rest of the day's good feeling as the jokes and ribbing shot back and forth between he and his uncle.

I left my two stooges with good humor, good laughs and a sigh as I regretted having to drive home and miss all the fun.

   Once again I extend my infinite love and gratitude to everyone who has sent a card, a picture and some amazing gifts. We appreciate all your love and support. I know you all understand it is nearly impossible to thank you all with individual thank you notes, but please know the outpouring of love, prayers and gifts is most appreciated. If you find yourself thinking of making charitable donations we are most grateful for everything Children's Hospital Wisconsin has done for us and everything the MACC Fund does to find a cure for childhood cancer and blood disorders.

   May all your blessings and prayers be reflected upon you one hundred fold. May all our unconditional love overflow to help heal all those in need in our lives and continue to make the world a better place. Sam's illness is proof that changing the world for good begins with one small person, even one small ill cell that has encouraged tens of thousands of people to pray as one (while dressing in Super Hero costumes at the same time! How cool is that?!).

Monday, June 25, 2012

One for the Books...a Good day

Where to even begin?

Food: It was a great food day, a great mail day and a great visitors day. Sammy didn't fight his intake of calories once today. In fact he pretty much took his intake by storm and asked for more a few times. It was a pleasure feeding Sam today and so rewarding to see him hungry.

Mail: Sammy got mail not once, but THREE times today! Sammy received over one hundred pieces of mail today and it's just Monday! Sammy got mail from over twelve states. Every letter was amazing and heartfelt. One of the most unexpected letters was from Vice President Joseph Biden. You could have knocked me over with a feather. The letter was genuine and meaningful as he wished Sammy a speedy recovery and told him Sammy was in his prayers. Is it ok for prayers for healing to go viral? I think we've reached that point. From my heart and from my family thanks go not only to our Vice President of the Unites States, but to all the family, friends, friends' of friends and strangers who've taken my Sammy into your hearts and prayers.
Not mail for the whole floor, just mail for Sammy.

We hear a little birdie in the form of our friends at the Religious Action Center of Reform Judaism made this happen and we love you very much....why yes, that IS a letter from Vice President Joe Biden. To OUR Sam!
Visitors: other than the mail person, Bubbie came to visit and had an incredible time opening mail and packages with Sam. Oh, and two members of the Milwaukee Bucks Basketball Team came to visit too. Just after lunch Tobias Harris and Jon Leuer were making rounds at the hospital and stopped to see Sam. Sam was amazed at how tall they both were. He is standing on his bed in the picture and they still tower over him. They signed a Milwaukee Bucks hat especially for him and Bubbe said it should have been Zeyde visiting today! Sam promised he would watch every televised Bucks game he could (ok maybe he didn't really say that part, but he sure told them all about his day). John M. Cary, the executive director of the MACC Fund (Midwest Athletes Against Childhood Cancer, inc) accompanied Jon and Tobias and introduced himself. I would consider the MACC Fund another cancer charity that is very much on my list of organizations to be supported so that someday no child will have to experience what my Sam is going through.
Someday Sam might be this tall. Okay, who am I kidding? But check out that GRIN!
Medical info: Our staff was exceptional today. Melissa, our nurse, took the time to walk me through the next two weeks or so. She warned me that every kid is different, but that Sam might get worse over the next ten days as his counts bottom out. I hope she's wrong, but I know Sammy's system will fight to recover from the chemo. I know his mouth sores may get worse as his gastrointestinal system recovers. I know his hair will most likely fall out (I'm hoping not, maybe Superman Sam has hair of steel that cannot be fazed by mere chemicals. Or I will have a mini-me bald twin). There might be days where he will be pale, weak and lethargic. Of course I'm hoping that his super powers kick in and with transfusions of blood and platelets Sam can walk through the flames of his recovery with a smile, laughter good days and great memories.

Sam's doctors visited and said Sam was doing great. Doc David played peekaboo with Sam for a moment on one of his walks and visited at the end of his day. Good people are always well connected and Doctor David is connected to no less than five people our family knows personally including the president of my congregation. If everyone I know loves and respects Doctor David, and Sammy likes him already, how can we not love him and trust him in his area of expertise?

Walks: Sammy took, not one, not two, but three walks today. TWICE he went all the way downstairs to the lobby with me to cruise the gift shop (we were definitely eyeing that white Bengal tiger), look at the large saltwater fish tank and walk in the sun garden outside Cafe West. In the afternoon Sammy did seven laps around the unit without a single complaint. It was a most amazing day of walks with my son and I even caught a small nap after being up all night with various beeps and whistles while Sammy slept pretty soundly through most of his vitals being checked at midnight and four.
The hospital has a Healing Garden that is accessible to patients. It is lovely.
Nemo AND Dory live in this tank. How cool is that?
During these times good days like this have to be savored and held sacred. Sure, we act normal as if everything is as it should be (every six year old should have a hundred pieces of mail day once on their life), while cherishing that normalcy as the potential quiet before the storm. In my hopes of hopes I hope there is no storm and that Sammy's system is stronger than I can even imagine. I want this time to be mundane towards Sammy's complete healing.

So I bless you all for your prayers of already healed, the supreme blessings you all represent in my life and share my infinite love and gratitude with you all for being part of my life.

Sunday, June 24, 2012

A great day and a small fever...

After a rough day of fatigue and low hemoglobin yesterday, I was excited to walk in on Sam surrounded by his loving uncle and friends. In fact, when I walked in all I found was my brother sitting by himself in the room.
I looked at him, I looked at the empty bed, I looked back at Josh.
"Um, aren't we missing someone?"
"Yeah, he's giving a private tour of the floor."
Ok, then.
I sat down and waited, and in a minute or so was rewarded by my walking, smiling Sam bursting through the door with our good family friends.

He jumped up on the bed, Aaron and Sam proceeded to play one of the many games he's received and everyone sort of marveled at Sam's good mood. The difference one transfusion of blood and platelets makes in 24 hours...
Sam and some very POWERful friends :-) (and check out Sam's SUPER shirt from the Schorrs!)
At some point in the day Sam got it into his head that he wanted a steak to eat. That's right, my mostly vegetarian son, who had rarely, if ever, tasted steak got it into his head that he wanted steak. Sometimes an idea is better left unrealized. By the time everyone returned with Outback Steakhouse steaks in tow, Sam was famished. As everyone dug into their "linner" (late lunch, early dinner), I cut Sam's steak into tiny pieces. I was worried the smell of all the food would overwhelm Sam, but he seemed nonplussed. He chewed and chewed his first few bites of steak and then had a sad expression on his face.

"Dad, doing all this chewing hurts my teeth."

Everyone else enjoyed the rest of their meal as I ordered Sam a yogurt smoothie from food service to give him something soft to nourish him.

The visit ended, I remembered I had to check in at the Ronald McDonald House where I caught a shower and shave. (Amazing!! So beautiful, warm and inviting. I've served many meals over the years, but never thought I'd be a welcomed guest ever.)

When I returned I found my son running back to his room trying to beat his uncle Dan to the room. "um, no running in the halls!" The look of glee on his face was priceless. I gave hugs to my in-laws and cousin as Sam told them all about his day. You do realize amidst all this activity Sam still managed to watch two movies and FaceTime with the rest of our family, Tante Anne, and friends of Sam from school. Ah, my little multi-tasker.

check out this amazing blanket made for Sam by the Kleinmann family!
After everyone had left except Cousin Dan and myself, ready for bed and time for vitals Sam threw a small fever of 102. Damn! I wanted to pretend my phone had died and not send a text to my loving wife.{Phyl's note: good choice, honey} I won't make you wait in a dramatic was down to 99 within an hour without any meds. Still doc ordered antibiotics just in case. Sam worked on his Chinese Puzzle while we waited the half hour for the meds. Through all this Sam felt fine. Clearly a fluke, but one not to be "sneezed" at just in case.

It took everything to stay in my chair. I questioned doc, and she seemed calm and unworried. As I type this Sam is watching his blood being drawn, fascinated and asking twenty questions of his nurse as she draws his blood samples. Who is this child? Last week he would have been SCREAMING bloody murder at the thought of someone drawing his blood while he watched. My son will never cease to amaze me.

I swear he's calmer than me because none of it means a damn to him. It just is. Each day different while he remains in the same place. The pictures on Sam's walls keep growing in numbers. The prayers of the multitudes have crossed across our nation, made it to Paris, France and are preparing to sweep across Europe. The quantity of love and well wishes wash over us with a level of warmth I've never felt before. Love is the only thing. And my infinite love and gratitude go out to you all who help me maintain my strength and hope with the prayers and love you send each day.

Saturday, June 23, 2012

Rabbi Google vs. Dr. Google - a PSA

I often joke about "Rabbi Google" being able to answer any Jewish questions.
Rabbi Google makes plenty of mistakes. But since I know something about the subject, I feel pretty confident when I've found an accurate answer.

Dr. Google?
He is not to be trusted.

So if you find something online about Sam's diagnosis, treatment, plan, or potential demise....

Don't share it with us.


P.S. All success stories give us light and hope. Feel free to tell us about your friend's brother's cousin's co-worker who is a survivor of childhood leukemia and now has a beautiful grown-up life. We like those. Keep 'em coming.


Day 10 - Last day of Chemo update

Sam has his final dose of chemotherapy at 3am tonight (so it's technically on Sunday).
Today he had a blood transfusion. It seems to have perked him up a little...and he announced that he was hungry! (He didn't actually eat much, but announcing hunger is a big deal.)
He spent most of the day napping/resting/sleeping. This is "normal" and the transfusion is "normal" and there are probably others in our future, which is also "normal."
Now we're in what the doctors tell me is the icky waiting period. And by icky, I mean all the chemo side effects you've ever heard about. I'm excited. Aren't you?

We have amazing doctors who are spending a lot of time helping us fight AML.
Keep their skillful hands in your prayers along with Sam, okay?

P.S. If you are interested in helping Sam or any other kid with cancer, donate blood. I know there will be a blood drive and bone marrow registry drive at Am Shalom on Thursday, June 28th between 2-8pm. You can also contact your local blood donation site if you aren't in Chicago! Even better, donate platelets. They need them, a doctor discussed this with me today. It is a little harder to donate platelets (it takes longer) so the need is actually greater.

Day 9 - are we there yet? (Friday's post*)

*I don't post on Shabbat, so you'll probably get multiple posts on Saturday night as I catch up from Friday and Saturday.

I know that Day 9 of chemo and Day 12 (?) of hospital stay are faaarrr from even seeing "there."

But today was one of those days when Sam asked to go home about a million times.

Not because there was anything particularly difficult today.
He slept in.
There weren't too many visitors. (Which can be both exhausting but exhilarating, so I suppose this was a part of it perhaps.)
Side effects were relatively minimal and there was a LOT of time "off the pole," unhooked from the IV.

I think he is just starting to feel the reality of how long this is going to be.
And so he started to wallow a little.
He pointed out that even when his sibs come to visit, they don't get to stay very long.
He pointed out that my one hour trip to shower at the Ronald McDonald House was an inconvenience to him. (Even long after I had returned.)
He pointed out that my insistence on exercise and water and food were horrifically unreasonable.
He pointed out how "little" time he gets just sitting in bed playing his games or watching TV. (due to my unreasonable demands on him.)
He pointed out that the letters and packages are fun and make him happy but that all he really wants is his family. (cute, huh?)

It's remarkable how much this is making all of my children appreciate each other more. I would prefer they learned that appreciation in another way....but oh well.

He spent a ton of time on FaceTime this afternoon/evening, with the family. 
Shabbat was quiet and unremarkable.

When he wants to go home my heart just breaks. But I know we are so blessed to be here, so lucky to have good doctors who got us here, who figured out what was wrong, who know how to treat it and don't panic and tell me that weird things are actually "normal" in this bizarre world of leukemia treatment. And so I plug away at it...wishing to snuggle my kid who hates to be kissed and relishing the FaceTime moments because he lets me lay down next to him on the bed and I can pretend we are snuggling and he doesn't notice. And sometimes I sneak in a kiss and let me tell you, those of you who know Sam best can tell you, what a feat this is. And I know, deep down, this is going to be ok. His frustrating stubbornness is going to see us all through. There's no rolling over from my Sam...he will argue the damn leukemia out of his body.

Anyway, medically he is doing great.
All his counts are going in the right direction (down) and he is probably due for a blood transfusion tomorrow. While that sounds all Twilight-ish to me, I'm sure it will be just as lowkey as the chemo is. Consent forms are all signed...just waiting for a handsome Dr. Cullen to walk in with some red stuff. (Probably not. Oh well, a gal can dream, right? The pharmacist is awfully handsome. I'm a married spud...)

I think I just need a little break. Hooray! Uncle Josh arrives tomorrow for a turn with Mr. Picky Pants my beloved child. And of course, someone will write some blog posts along the way, I'm sure. Whew.

From today:
I love this shot...
Beating me at air hockey. Too bad the thing doesn't actually keep score.
And an update on our wall:
Wow. We have actually moved over into the entryway and covered up a poster...THANK YOU to everyone.
One more day of chemo. Then we wait.
Shabbat Shalom!

Friday, June 22, 2012

What is normal anyway?

     Our lives are being lived in the new normal, whatever that means. It has been shocking to me to discover that a lot of the scary words (Chemotherapy, Treatment, Cancer) are a lot more mundane than you would think. I believe my own fears and my own expectations are way worse than the reality I've experienced in the last two weeks. For starters when I think of Chemotherapy I think of nurses and doctors entering a room in radiation suits holding the vials of chemotherapy in large tongues, having to clear the entire room to administer it. I was quite pleased to find out this was not the case at all. Sure, the nurses put on a protective gown just in case (if you ask really nicely, one might do the really funny loud clothing dance to make Sam laugh), but it is blue and doesn't have a radiation or bio-hazard mask to go with it. In fact, if the nurses didn't tell us it was time for Sam's treatment we would still be playing on the iPad together or watching a movie while they sauntered past us with innocuous looking syringes that they would plug in to Sam's apparati.
     I have to admit so many of my expectations came from television, movies and my own father's experience over twenty four years ago. They aren't Sam's reality. They are my own fears in my head. Oh, sure this could just be two really bad weeks that weren't quite as bad as I thought they were. Or these could be Sam's normal for receiving this treatment.
    My expectations for chemotherapy were huge amounts of nausea equalling flu like symptoms. I expected scenes from the Exorcist with Sam projectile vomiting while his head spun around spraying the room with pea soup (or chocolate milk, he really hates Pea soup). Our experience is he got sick once or twice a day a few hours after eating or after walking too much and threw up gently into a basin while we plied him with water to rinse his mouth and tissues to wipe his nose. It wasn't hourly, it wasn't overwhelming and in fact it was much less frightening then when he did have the flu a month ago and was just wretched and wretching for 24 hours. Thank God for small things and for the anti-nausea medicine REALLY doing its job.
     Years ago my father was wiped out by chemotherapy and his treatments seemed to drain years from his barely fifty year old self. Sam is pissed, but realizing he is very loved and surrounded by all those who love him (or totems of love in the shape of various toys, books, games and electronic devices that have poured in from all of you). One family even sent a lifesize fascimile of themselves in the shape of a GIANT bear to show Sam how much they love him (I'm beginning to question their love of me since I truly have no idea where to put the bear just yet).
   So I am adjusting my expectations for this new normal. Sam and I did our best this week to have a lovely time spending our days in the hospital together. The other day he earned time on the iPad by eating ten spoonfulls of vanilla yogurt. Afterwards, when he was feeling up to it he walked to the central patient's TV lounge where he played on the x-box for a bit and talked to his doctors while showing them his growing driving (crashing) skills. At lunch I was most proud when Sam asked for and devoured an entire strawberry yogurt (a day before the feast of 9 plums).
   In truth we all know there is rarely a normal. There are the moments we face with ease and the moments of chaos we face using the best of our abilities and survive by the grace of God. Sam is doing great in my book. He is no longer screaming from leg pains I can barely fathom. He is walking, talking, laughing, making silly faces at family and friends on Facetime on the iPad, and enjoying his life as much as possible all things considered. In other words, he is making the best our of a bad situation, but not making it worse than it already is.
    Sure Sammy is living in a hospital ninety minutes from me for an extended period of time. My wife, my brother or I are separated from each other as one of us keeps Sammy company on any given day. Our reality has been shifted dramaticaly to make room for this temporary reality. This time has given us all pause to truly look at what is important to us and what takes precedence in our lives. It has given us time to give thanks for how close our family is to each other emotionally and physcially. It has given us a chance to see how much our friends, family and communities love us and support us during this time.
  Even when my five year old daughter asked me to go to bed when she went to bed last night and asked if she could sleep in our room I didn't hesitate in granting her small request. I simply put a pillow in between us as we both lay down to sleep hours before my normal bedtime (she tends to kick and my iPad lets me read in the dark).
   There is no normal. There is only this moment. I love my son, Sammy, for all the strength he lends me to see he is handling this so far, just fine. I love my wife even as the events separate us. I love my brother for learning to be a parent of four in a year when it took me a decade to get close to being an advanced novice of a parent. I love my mother for always being there and thinking we are the best. I love David, Yael and Solomon for rolling with it and pretending not to be too scared. And I love all my family and friends for all of your kind words, texts, calls, FB messages, calls, hugs, gifts, meals, and tears. Together we can get through this all. Together we remind ourselves what it is all about in the end. Infinite Love and Gratitude.

Thursday, June 21, 2012

Negotiation...Chemo Day 8

Sam is a MASTER negotiator. Yes, that was in all caps. Yes, I am shouting just a little.
Seriously, Sam and I had some major negotiations today.

Remember how I showed you our checklists?
Sam has become a rockstar about the mouthwash and the eating/drinking.

It's the walking.
Ugh, he is so determined to spend all day in bed.
Part of this is his furious anger at the whole thing.
I totally get it.
I would like to spend all day in bed too.
Wait, I would not.
I need a little fresh air.
I think Sam has realized how badly I want to go outside and he is determined to keep me indoors!
But this is not about me, right?!

Anyway, we got a few walks in.
And a visit with the music therapist (who knew!?):
Also, isn't that a cool gizmo for guitar teaching? Sam wishes they had a full keyboard, they only have little ones. He did pluck out his piano recital piece though.
(He was so entranced with her that he actually stopped playing xbox with another child to spend time doing music!)

He also got some mail....
This was the second delivery of the day. The first one had 18 letters with superhero pictures...
Sam had quite a few visitors today, which helps to give him something to distract him from ME trying to cajole him into taking walks!

Do you recall how Sam had a big complaint with his IV pole? Things have lightened up a little now that we have time away from it (we're only hooked up for chemo and a few meds, a little bit of fluids now and then) but while we were frustrated with it, my dad remembered that Stephen Colbert wrote a whole book about a Pole. Yes, a Pole. (Not a person from Poland, mind you, but an actual Pole.)
Zeyde ordered the book and brought it in today to read to Sam. Sam's review of the book: "It was silly and didn't make sense." Yep, that about sums it up. But it's Stephen Colbert! So we giggled all the way through it. (In case you care, here is my one-line review: "A sweet coming-of-age story!")

Here's your smiling Sam for the day:
We are in Wisconsin, after all.
Two more days of chemo treatments, followed by a bunch of waiting.
I think I may have a plan for tomorrow that will eliminate some of the frustration - will report back tomorrow on that one.

In mama-land, I started watching Downton Abbey on Netflix. Aside from the glitchy wi-fi, I can actually see why people are so hooked on the show. I need a fun bring on the costumes and the British accents!

Wednesday, June 20, 2012

Nine Plums on Chemo Day 7

One perk (?) of being in the hospital is that you get to sleep late.
(Of course, you have the other "perk" of an every-four-hour vital-sign-check...)
Sam slept until after 9:30am!

Sam's numbers are doing what they are supposed to. The doctors are very pleased with how he's doing. We had the dressing changed on Sam's central line. That was an experience that I don't think Sam or I enjoyed. We didn't really need to see how it is actually attached to him. Too medical for us.
(We're also working on a little more exercise, which we hope will be better tomorrow with less nausea.)

Because I had the funeral today, Sam got to spend the afternoon with Ellie. They went for walks, and he even played the keyboard in the playroom! (I have to bring a piano book up here so he can keep practicing for Miss Tina's lessons.)

Karen brought Sam a box of plums, which he had requested yesterday, and over the course of the afternoon, Sam ate NINE of them. Yes, you read that right. NINE. I know what you're that wise?! But we asked the doctor and they said...don't knock it if he's eating! (And seriously, plums are quite healthy. He has laid off the candy already!)

One of the things I like about the hospital is that I never feel that the doctors are rushing us. The resident came in to see us and she stayed for quite some time answering Sam's questions (and mine) and then the oncology docs (fellow and attending) came in to see us and spent quite some time chatting. As though we were their only patients. I know we aren't! But it makes me feel as though they're really paying attention to us.

Sam got 15 letters today (and a few packages as well) - WOW.

What part of Sam's wall looks like so far. As we laid in bed for bedtime stories.
 We ended the day with a little Dad-UncleJosh-Yael-David (Solly was in bed) FaceTime...
I so wish that the pictures of the two of them making faces at each other had come out better....
Sam is loving the mail, and I can't quite believe how far our little superhero project has gone...we are feeling the love and we thank you all. (((Hugs to everyone!)))

Tuesday, June 19, 2012

Visitors...Chemo Day 6

Today was a little crazy.

It's hard to believe it, but my grandmother died last night. (I'm sure I will write something on my personal blog about my amazing and wonderful Bubbie Rose, but suffice it to say that she lived 96 wonderful years and I will miss her terribly in my life.)

So today, I made a somewhat unscheduled trip up to Milwaukee (Michael was here for the night, we are switching off in a not-so-regular pattern) so that we could prepare for the funeral. So I brought along Yael, to spend a little time with Sam. She was overjoyed, and he was happy to see her. He had a good day - a little bit low-energy by the time I arrived. It's hard to be in the hospital...
Sam got a visit from the very famous author, David Bach, and his mom, my Aunt Bobbi (which, of course, makes David my cousin!) and he was totally excited to look at pictures of David's boys and talk about the last time they were here to visit. He also spent time with Randi and Karen and Rabbi Steve - it was a busy day!

Like his cool fedora? Just like his big brother - a little birdie told them that he wanted one!
Yael helped out with some picture-posing, after she and Sam did a little painting together. Randi showed up in full superman regalia - shirt AND pants!
Sam was an eating machine, consuming yogurt and fruit and cheerios and a grilled cheese sandwich. He has started making odd requests (a plum? mac and cheese from our Sukkah party?) and we're trying to make sure that he keeps down what he eats. Whatever works! The nausea is still there...hopefully that will subside soon. There's a lot of tired-time, and he totally crashed at bedtime after his bath - suddenly he wanted nothing more than to go to bed (and mean old mom made him brush his teeth). Day by day...

One last smile from Superman Sam:
Does it get any cuter than this? at home

We are trying to be normal.
Car washes.
Farmers market.
Pancakes for breakfast.

But it feels unbalanced.
Strange to count heads and come up one short.
To turn and look for a kid who isn't there.

I just feel off.

Monday, June 18, 2012

Big Brother Visitor - Chemo Day 5

Guest post by big brother, David - he visited Sam today and dictated this blog post to me.

I walked in and said, "hi".
Sammy was like, "YAY! David's here!"
I thought that it was awesome to see my brother so happy and content.
Right after we got there we went for a walk.
Sammy showed me the kitchen. It was small.

I showed him his bag of presents and his face lit up. He's all like "yay! chocolate chip cookies!" He didn't eat any but me and Uncle Josh did.
 He said we could.

Then I showed him the turtle he got, which was one of those toys that you put in water and it grows bigger. We didn't do it yet, though.

We played Uno and built a Lego (Cars 2), but not all of it yet. We only did three-quarters.
When it was time to go, I gave Sammy four hugs. He said, "thanks for coming," and I was sad to leave.

I asked over and over if I could sleep over but wasn't allowed to because only one person was allowed to sleep there and I'm not old enough.

Thanks for reading.
Building a Lego together
Seemed like a good day today for Sam...lots of liquids and more eating. Walks and smiles.
His "counts" are dropping, and that is exactly what is supposed to happen.
So good....

The Art of Wrangling Sam {guest post by Uncle Josh}

Uncle Josh spent last night with Sam so we could have a little break. Sam and Uncle Josh have a great relationship, built on comedy and mutual snarkiness.

This morning, our text conversation went like this (and yes, it was accompanied by the photos. And yes, I giggled the whole time as it was coming into my phone...which I sorely needed):

Me: Did he eat?

Josh: Well, let me tell you about THAT.
Josh: First, they had captain crunch on the menu.
Josh: But when I ordered, no captain crunch.
Josh: My food arrived first....
Josh: He asked what I got.
Josh: I was suspicious.
 Josh: I tried to hide my vanilla yogurt
Josh: But it was too late. He'd seen it and was like a shark, he'd decided on his prey. He ate the whole thing while mocking me with glee.

And that, my friends, is the way to wrangle a uninterested eater.
A masterful performance, ladies and gentlemen, by the incomparable Uncle Josh.