And then it hit me...

I don't even know where to begin. The other day as I stood looking down at Sammy, so small sitting in his big hospital bed I felt my face crumble as my tears began pouring down my face. Sammy looked up at me and said "Daddy, I've never seen you cry." In ten years of fatherhood I've had more reasons to cry for joy than sadness or fear. I cried for joy at the birth of each of my children which they wouldn't have witnessed. I've had very few reasons to cry in front of my children in sadness or fear up until last week. I tend to be the funny laughing dad telling jokes or tickling everyone. Or I'm the gruff, "Go to bed now! (or your life expectancy will diminish rapidly)" dad. I lost my own father to leukemia when I was 23. I lost a dear friend of the family and both my fathers parents before I turned thirty. I spent the '90s crying in sadness, but I've lived a very blessed decade these last ten years, where my children haven't seen me cry up until now. I've spent a decade without reasons to cry. I've made up for it this last week and I expect my family and I will spend a bit of time crying with each other and comforting one another. All the support of my friends and family and your personal emails of your journeys bring tears to my eyes as I feel your love and prayers wash over me. I believe Sammy will see this through to a complete healing with all the love and prayers surrounding him. I will renew my strength with all your love surrounding me and my family. I thank you in advance for all the support we will receive during this trying year. I gain strength from Gregg Braden's teachings about prayer being a feeling towards creating the blessings we seek. I feel Sammy already healed. I feel him up and running, playing and laughing in our world at home surrounded by his family and friends who love him dearly and seek his presence returned for good in complete health.

Checklists and PomPoms: Chemo Day 4

I need a set of pompoms.
Don't take that literally, please.

But I seriously felt like a cheerleader today.

Sam needs a lot of cajoling and bribing, a lot of convincing.
He is angry at being in the hospital.
He is angry that he has to have an IV pole to drag around.
He is angry that he has to have his bodily functions analyzed.
He is angry that we want him to move around and do things.
He is angry that he isn't home.
He is angry that he has cancer.

And dammit, so am I.

But my job is to make sure that stuff happens in the hospital, no matter how ticked off I am at how unfair and stupid and SUCKY this all is. (Yep, I've got high-level vocabulary to talk about leukemia.)
(And thank GOD for the nurses - they are amazing. They tease and cajole and flirt and help and push and act silly and help so much.)
So here was today's checklist, created in team with our nurse:

 So we walked, a little bit outside. Sam hates the IV pole, did I mention that? One of the nurses asked him if he had named it, since some patients do. "I am not friends with the pole. I will not name it," he said. (I keep trying to come up with names. I like Oscar, as in Oscar the Grouchy Pole. I also like names that start with "p" like Poopy the Pole. Sam is not amused by my own self-amusement.)

And then there was the visit. The Gerstein boys and their parents came to visit Sam, and he lit up at the sight of these boys who have been his favorite "big" friends for so long. He hopped up and gave them a tour of the floor (check off "walk"!) and he played Uno and put a Lego together with them. He even ate a bag of french fries while they were here.

In case you're looking closely at this picture, Will is only wearing a mask because he thought it was fun and cool, not because we need those kind of precautions yet in our room. Whew.

They left with a promise of another visit in the future. And even though Sam is relatively frustrated that there is a future in the hospital, that makes it seem a little more bright.

Uncle Josh is spending the night with Sam. They've already worked out a system for dealing with the late night wakeups. And taken two walks. (check! check!) Before I left, I wrote out tomorrow's checklist. I snuck in an extra "walk" box just for kicks. A cheerleader never gives up, right?

Superheroes for Sam: A Photo Project

As I put Sam to bed on Friday night, I sang Debbie's Mi Sheberach, a prayer for healing.*

The conversation afterward went something like this:

Me: Do you know how many temples there are like ours around the country?

Sam: Um...a thousand?

Me: (impressed) okay, that sounds like a good number. Do you realize that at, say, 500 of those, people said "Sammy Sommer" tonight when they sang that prayer?

Sam: Wait, you mean when you go like this? (and he held out his hand just like I do when I ask for names for healing) And people say names?

Me: Yep.

Sam: I don't believe you. That is too many people.

Me: Ah, but you're wrong.

Sam: We don't have friends in 500 places.

Me: Wanna bet? 

Each day, I get emails and texts and Facebook posts and tweets. 

Sam doesn't quite get the volume of people who inhabit my phone.

I want to show him.

A family portrait I never would have imagined...

If you want to help me show Sam how many people are on his team, so he can feel the love:

Take a photograph of yourself wearing your favorite superhero shirt 
(or holding up their logo...or just smiling!)

Print out the picture.

Put it in an envelope and mail it to:

Sam Sommer, E584

Children's Hospital of Wisconsin

P.O. Box 1997

Milwaukee, Wisconsin 53201-1997

We will hang all the pictures on Sam's wall...Team Superman Sam! 

*(And I know that many of you are not Jewish, and your prayers are just as important and precious to me - God hears us, however we pray. And let me tell you - we will take all the praying we can get!)

Shabbat in the Hospital

Shabbat in the hospital doesn't feel like....Shabbat.

There are still people coming in and out with medicines and tests. There is still a flurry of things to be done. Nevertheless, we wanted Shabbat.

There was challah, brought from home. The batch was split into two, one challah in Milwaukee, one at home. Sam's favorite turtle held the challah for us.

 There was a Shabbat blessing, even though Sam was feeling a little under the weather and didn't eat any Shabbat dinner. (He did have a bite of challah)

 There were candles. Well, sort of. The chaplain visited us earlier in the week. When he learned that we are Jewish, he immediately offered "candles" and brought them back to us on Friday morning! (I suppose I shouldn't tell him about the Chanukah candles that we actually lit in the hospital when Solly was born. I knew that was a rule-breaking moment!)

But it was a rough night. There were a few fights with the nurse over the simple vital signs that she needed to test for. Every four hours, they come in and check blood pressure, temperature, and a few other things. Plus there was 3am chemo treatment, administered through Sam's central line. There's quite a bit of activity during the night in the hospital. Sam was feeling a lot queasy and he wasn't interested in eating...which continued into Shabbat morning.

But then a few special visitors came, and that brightened the whole day for him:

Ready to roll

Sam with his superhero team

 Sam showed them around the HOT unit (Hematology/Oncology/Transplant), and gave them the grand tour.

A Shabbat walk

 He also showed them some of the hospital stuff, like his central line, and he listened to their hearts.
They also got to eat some of his candy...and so did he.

 He was so happy to have them here. It's amazing how much time my kids spend with each other, and Sam and Yael have barely ever spent more than a day or two apart. I hadn't given that much thought until now. Solly was a little tricky. He wanted to touch and taste everything, which doesn't much work in a hospital. We're going to plan a visit for this week that is only for David and Yael...we'll leave the little guy at home.

Then we took the other kids out. We had planned to do the zoo but it rained, so we hit the Milwaukee Public Museum. It was nice, but hard. Sam is the biggest fan of the museum (he loves the rainforest section) and I think we could all feel his absence.

 After we got back from our little outing, I was exhausted...so Sam had a little quiet chatting time with Uncle Josh. And he ate a McDonald's fish sandwich and french fries. It was the first real food he had eaten all day.

 

Sam has not been very interested in walking around. He is a little nervous and frustrated with the IV pole to which he is attached. I think there's a little embarrassment also. Finally, we convinced him to go for a walk and see the fish tank in the lobby. We spent a lot of time there, talking fish with Uncle Josh and just enjoying the big tank.

Then, after Uncle Josh left, we explored the Healing Garden, which is a quiet outdoor space. Sam walked around it a few times and we decided to come back again tomorrow. It was so lovely to get some fresh air and to see him enjoying the outdoors. His nurses were so proud of his adventure!

It's getting a little easier for Sam to deal with all the challenges that are presented to him. He hates to take meds by mouth, and so we're finding new ways to make that work. He isn't so interested in eating, but we've already planned tomorrow's breakfast menu so hopefully that will help out with eating. The doctors are trying to avoid a feeding tube, but sometimes that is inevitable, we're told. Sigh...many pieces of this seem unavoidable. We have a lot of trust and faith in the work of the doctors and nurses...

We had some lovely visits from rabbi-types and other friends before and during Shabbat, so many wonderful notes and coloring books and gifts...Sam is starting to feel the love, and we are so very grateful. Thank you to everyone! I know I can't thank you all personally, so please know that we are so very grateful for everything you are all doing, for Sam and for our whole family. We truly felt all the prayers for healing that were said all over the world on this Shabbat.

May this pleasant Shabbat ("a good day," as his nurse called it) be a harbinger of the whole week ahead!

Which flavor?

I didn't really realize that Sam doesn't like mint flavor. I guess I know he doesn't really chew gum, which is a big 5 year old milestone in our house, but I never realized that he didn't eat Karen's mint brownies. Or brush his teeth with mint toothpaste.

(My mom doesn't like mint either. So I'm familiar with this oddity.)

Did you know that chemo also requires a 3-4 time daily mouthwash in addition to brushing your teeth? This Is to prevent mouth sores (yuck) and keep things really clean. Did you know that the hospital provides....you guessed it...mint toothpaste and mouthwash?

Yep.

And to be very sure, I engaged with a lot of modern technology. Dad took a picture of every kind of toothpaste in the house and Sam identified the kind he uses and likes. Then I sent Bubbie and Zeyde on the case...

Toothpaste.
Mouthwash.
Such ordinary items.
They've become tools in our fight.
I spend a lot of time in my work finding holiness in the ordinary.
Now it's in the toothpaste too.

P.S. Sam also got a cool new toothbrush! Thanks, Bubbie and Zeyde!
P.P.S. The mouthwash that we need doesn't actually come in any other flavor. Today we bought four different kinds. They were all rejected by the hospital staff and returned to the store. Bummer. Sam has actually gotten pretty good at the swishing with mint...see what you can adapt to? 

Guest Post: Rabbi Anne's Sermon on Sammy

On Friday night, our dear friend, Rabbi Anne Persin, gave this D'var Torah.

I love how she wove our little person into those two brave souls, Caleb and Joshua. 

I can't even begin to tell you how much it means to know that she gave this sermon.

(I like her ending the best - imagining Sam's Bar Mitzvah has become a favorite pastime. I think it will be November 10, 2018....Parashat Toldot....God willing.)

Sh’lach L’cha ~~ Team Superman Sam

by Rabbi Anne Persin

As Cantor read beautifully this evening, this week’s torah portion tells us the story of the spies… [recap story].  Of the 12 spies that went in to scout out this promised land, 10 came out afraid and certain that nothing but doom was before them.  Only two, Caleb and Joshua, believed that they could face the challenges before them, that they could fight the fight.  

You may have noticed that Rabbi Sommer is not here this evening.  He is spending some very important time with his family.  Some of you may have heard that this week we received the terrible news that his six year old son, Sammy, has leukemia.  This has been a very long and very difficult week.  Sammy and Michael and Phyllis and the entire family have a long road ahead of them.  

I have been doing a lot of research on leukemia this week and the good news is it has some of the best cure rates of all of the cancers.  The bad news is: it’s cancer.  There will be chemotherapy.  There will be weeks at a time living in the hospital.  There will be nausea and hair loss and all of the pain and discomfort of having cancer.  And Sammy is only six years old.   

Sammy… I would like to tell you a little bit about this kid that I adore so much.  He is so funny.  Sometimes he can be a little mazik (that’s Yiddish for troublemaker) but more in the class clown sort of way.  He is so sweet and so polite, well to strangers—when one of the nurses asked if she could draw blood, he said, “yes, please”!  As a six year old boy he loves lizards and turtles and angry birds and jokes featuring bodily functions.  He LOVES stories.  Whenever I come over (and that’s pretty often) he asks me to tell him a story.  He makes requests for his favorites but is always happy to hear a new one and if one especially catches his fancy he can pretty much retell it to the next person who comes by.  He has a sign on his hospital door that says: NO GIRLS ALLOWED!!  Thanks, Sammy.  Sometimes he is a cranky old man.  Sometimes he is wide eyed with wonder.  He is sly and cheeky and pushy and silly and helpful and caring.  And Sammy is a fighter.  Sammy is Caleb and Joshua.  

It is not easy to be Caleb and Joshua.  So many challenges that life throws at us make us feel like we are nothing more than grasshoppers about to be stepped upon by giants.  Our Torah reminds us that ten out of twelve people agree that life can be scary and imposing and can make us want to run far far away.  But sometimes we do not have the option of running far far away, of being paralyzed with fear.  Sometimes we have to be a fighter.  We have to face the giants in our path and we have to be Caleb and Joshua.  Poor Caleb and Joshua did not have much support in their readiness to fight or, for that matter, in their faith in God.  Luckily, Sammy and Michael and Phyllis have tremendous support from you, B’nai Torah, from Am Shalom where Phyllis is a rabbi, from Oak Terrace where Sammy just finished Kindergarten, from Lutz where he went to preschool, from family and friends throughout the Midwest and throughout the country and even in Israel.

Sammy is a fighter but for him to face this giant and to reach the promised land, he needs the support of his communities.  We are Team Superman Sam. And here’s are some of the things that we can do to support Sammy, Michael & Phyllis throughout their fight with the giants.

• Follow their blog: supermansamuel.blogspot.com
• Sign up with B’nai Torah to provide a meal one day throughout the next month
• Please have patience with Michael—he may not be able to return every call or text or email just yet

Tami Jacobs, our Executive Director, has taken on the incredibly wonderful task of point person for B’nai Torah throughout all of this.  If you have any questions or want to do more, please call her.  And keep checking our website and eblasts.  We will have updates on Sammy and on how we are helping him fight the fight.  

One last thing that we can all do: pray.  Imagine this silly, sweet, cheeky, fighting kid healed and playing at home.  Imagine him being called to the Torah as a bar mitzvah when he’s 13.  Imagine him graduating from college, getting married, having kids of his own.  Imagine him living a long, happy, healthy life.  Hold that image in your minds and in your hearts and in your souls.  And let us pray that it will come to be.

From Rabbi Rebecca Einstein Schorr’s blog post on Sammy:
Holy One
Who has brought comfort and strength to our mothers
and courage and hope to our fathers.
May You bestow the caregivers with gentle hands and tender words.
And holdShmuel Asher ben HaRav Pesah Esther
close during this time of great difficulty.
May the day come soon when his pain is but a distant memory
and we can rejoice in his renewed strength and health.
Keyn y’hi ratzon…May this be Your Will.

All the Candy You Can Eat?

Being a kid in the hospital is no fun. Today is Day 2 of chemotherapy, and every so often a lovely, friendly, cheerful nurse comes in to hang a new bag of something in Sam's IV.

And other people come in. All day long, in and out, people coming in. They have friendly faces, they bring new information or messages, they have things for us to sign or read or do...and for the most part, Sam accepts this rotating cast of characters.

Sam doesn't always want to chat. But give him enough time, and ask him about turtles or frogs...and you're probably going to get a smile from him.

Offer to teach him to make water guns out of syringes? Friend for life.

A little mischief goes a long way

Learning to refill the syringe

Pleased as punch because he just got me with a spray of water

Another "perk" is getting to eat candy...pretty much in quantity. 

Sam has had very little appetite yesterday and today. He was pretty excited by these gummy bears (thanks, Erica!) and the doctor said, "calories are calories." So with Dr. J's blessing, Sam ate about half the bag.

Woo-hoo!

 

Here's hoping for a quiet and uneventful Shabbat.
Shabbat Shalom from our (hopefully very) temporary home in Wisconsin....