Day of Healing {Day 16}

I would start with "I swept in during the dark of night..." but really, yesterday I strolled in much earlier than expected around 6:45 pm to Sam and a table of kids doing puzzles and asking questions when they needed help. As already stated, bath time was fun and uneventful, even if I wish I never had to draw another bath. Yet I know there are so many more baths that will need to be drawn. I look forward to the baths, months from now, without a central line or aquaguards, or even a hospital room. If I can't dream of times to come then I might as well not dream at all...

Sam slept well through the night while allergies woke me in the middle. Thank goodness for allergy meds. Sam woke for a moment in the morning and then crawled back into bed where he rested quietly until almost time for class. While he slept I ordered him a banana for breakfast.

We both got out of bed ten minutes before his tutor arrived. He ate his breakfast and then he and his tutor tucked into reading and math. Sam read to her beautifully. His reading skills continue to get better and better. I was quite impressed.

After rounds we lit out onto the floor and proceeded to do laps. Sam was up for the challenge so we walked 31 laps before 11 am, almost 1.3 miles straight out the gate. Most of the time I tested Sam's mental math skills since he had to figure out all the answers in his mind. We worked on addition with three numbers, multiplication, and division. We talked percentages and fractions a bit and I taught him how to figure out the square root of a few numbers and what it meant to square a number. When I ran out of math questions I started in on Harry Potter trivia. I tested Sam's knowledge of the characters, their animals and best friends. Sam impressed me with his ability to remember most of what he knows about Harry Potter. We had a fun time chatting away the laps and keeping our minds keen.

Afterwards, we returned to the room for some drawing and a pre-lunch snack. Judi and Max dropped in because Max had an appointment at the hospital (quick healing Max) and Max drew an amazing freehand picture of a frog that Sammy loved. A little after that Bubbe and Zayde arrived with a much cherished (and devoured) fish sandwich. They kicked me out of the room to avoid getting the Hospital Twenty (similar to the freshman fifteen, but much harder to work off).  While I was at the Wisconsin Athletic Club across the street, Zayde and Sam played math games, even one that included rolling dice and creating math problems from the roll of the dice. They had a great time together.

Bubbe and Zayde left with dirty laundry in hand a few minutes after my return. Sammy felt a little nauseous a bit after that so we stayed around the room. Sammy drew a lot of pictures today.

 Sam's version of a Whangdoodle

Sam's most intricate drawing of the day with animals above and animals underground

 Just before bedtime the music therapist showed up and asked Sam if he'd like some music. The movie was quickly paused and shut off with a resounding "I'd love music!"

Sam loved playing the drums, large and small and played the beat to whatever songs the therapist sang. Then they played a song game where Sam had to play certain beats when she sang certain words to "In the Jungle." It was a great end to a mellow and satisfying day of healing. Every morning the docs talk about how Sam's immune system is still non-existent and yet the boy we spend the day with is inquisitive, funny, snarky, hungry and occasionally a little nauseous. He is a marvel. He gives me strength. He gives me hope that all this is working and he can handle anything we throw at him towards his eventual bone marrow transplant and a long life of health.

Every moment of the day was blessed with Sam's shining spirit which is the strongest thing helping all us adults get through this ordeal. Thank you to all of you who help make the days go quickly and all your prayers that fill our lives with warmth and love. Together with the cards and all your support they continue to help us tackle each day, one at a time, as the sun rises and sets.

Last Chemo {Day 15}

Did you know that sometimes the chemo protocols start with Day 0? No one could quite explain to me why the first day of our inpatient stay and chemo protocol was called Day 0, as opposed to Day 1. So while we here on our blog are sure that we've been in the hospital for 15 days, today was only Day 14 of our chemo protocol. Whatever works for these medical people....whatever gets my kid where we need to go...

Day 14 was a BIG DAY! It was the LAST day. Woo hoo!

It was totally uneventful, as you can imagine:

It was so uneventful I almost missed taking this picture of it! Sam is watching a movie.

The rest of the day was too. There were math games with Zeyde...

Crossword puzzles with Bubbie...

Laps with Mom....

Headstands in bed... (yeah, I like that you can see the "Fall Risk"yellow wristband he's wearing while doing a headstand in his bed. Oy vey.)

Dinner from a local Mexican place was well-received by Sam, who pronounced it "just like Tacos el Norte" and therefore perfect. (Milwaukee's Mexican restaurants clearly have a high standard to live up to -- we've yet to match Curry Hut but thankfully we can somewhat replicate our favorite local Mexican joint!)

And Sam was thrilled to see Dad when he came up late this evening! So thrilled that they decided to take a bath for old times' sake! Okay, just kidding. A week without a bath was enough to make for a slightly stinky Sam. And the conversation went like this:

Sam: I said I wasn't taking a bath for 18 days!
Me: But I didn't agree to that.
Sam: You said I didn't have to take a bath for a loooong time!
Me: Good point. A week IS a long time to go without a bath. Do you want to do it now before Dad gets here?
Sam: No, he got really good at it. He likes it!

This was not true, as evidenced by the look on Michael's face when I told him that Sam needed a bath tonight! Oh well. A bath was had and I can tell from this picture that they sent me that it was not so bad...

And now the waiting begins. His counts have almost completely bottomed out and we are now just in the "awaiting counts recovery" phase. They tell us this could last quite a long time -- we just take it one day at a time....

Remembering {day 14}

A year ago today was a memorable day. It was, like today, the last day of Sunday School. It was also the day of our spring piano recital.

And I clearly remember that it was the first time that Sam told me that his legs hurt.

May 20, 2012.

He wasn't diagnosed with leukemia until June. But on that day, this odyssey began. I remember saying, "don't worry, I'm sure you're fine" and "maybe a bath will make it feel better" and other things that didn't really work and barely make any sense any more.

I woke up this morning remembering that day.

Sam on May 20, 2012

This year, Sam is in the hospital. We are on a path that I don't think I could imagine in my wildest nightmares last May. But we're doing okay. Sam is doing okay. The road is incredibly rocky. We are not even nearly at the end of the journey. It feels more and more like a grueling marathon.

But we're doing okay.

I never imagined the love and support that would flow our way. Not because I didn't believe it was possible, but because I just couldn't envision the myriad of ways that all of you would come together to lift us up and carry us along in this river of fire. It has been the greatest blessing, and we are so very grateful. Thank you.

--

Today was uneventful for Sam.
We spend a lot of time keeping him occupied. In between snacks and drinks and walks and books and movies and such...I think we're doing quite well. Weekends are quiet in the hospital, so we can go downstairs whenever we want.

 The weather was spectacular, so we spent at least an hour today in the Healing Garden....well, healing. And hunting for bugs and checking out the newly planted flowers. We took a long walk (almost half a mile, I used a pedometer app to check it out) over to the cafeteria of the adjoining adult hospital (Froedert) for dinner. The Children's cafeteria isn't open on the weekends. It was a nice little outing for us, even though Sam only got cereal and yogurt!

We love all the book and movie suggestions. Tomorrow we'll play games and write notes and do puzzles and stack states and countries....and we are ready.

In other news, this happened in our family:

So proud of my David for chopping his hair off in honor of Sam and raising money for the MACC Fund along with 7 other boys from our synagogue. There were also about 10 kids who donated hair to Locks of Love. It was a pretty amazing day.

And so it goes... {day 13}

A quick update....Friday and Saturday were nice quiet days for Sammy. He was sad to say goodbye to his buddy B who went home today after he finished his chemo (but yay for B and family!) and he spent the day hanging around with Uncle Josh and eating McDonald's (you're shocked, I know.)

Tomorrow is the big day for David's buzz cut. Click here to donate to support the great work of the MACC Fund: http://teammaccfund.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=426280&lis=1&kntae426280=737FED0E002D42139B8A789BCD0F60AC&supId=379026846&team=0&scWidth=320&extSiteType=

All our love to all of you....

Guest Post: Monkey Interview

My friend Sara Yagobian Goldsen keeps me hilariously entertained with her pretty regular emails and Facebook comments. It brings me back to the days when we used to write notes back and forth in a notebook in our NFTY days....Anyway, she sent me this guest post, which I know will make you all giggle just as much as I did. In lieu of a "real" post about Sam today, I offer this bit of humor about Sam's monkey, George, who sits in his chair at school while he's in the hospital. Thanks, Sara! You rock (and you seem to have a future in comedy writing...)

Hello, monkey.  Thanks for joining me for a few minutes to answer some questions about your experiences and your purpose.

Thanks, it's great to be here.  Well, not entirely, but we'll discuss that more later. 

Would you like a seat?

Thanks, but I'll just swing from this tree.  It's 'monkey in the CHAIR'…..trust me, I do plenty of sitting!

Suit yourself. I understand you endured the washing machine.  Can you you describe it?

It was a very scary procedure, and I don't really understand why it had to happen.  I don't really want to talk about it.  The washing machine is a controversial torture tactic, and since my mouth was sewn shut I don't know what they ever expected to get out of me.  The Washing Machine makes headlines, but I also endured The dryer.  It is seemingly endless tumbling.  I felt like I was going to puke the entire time.  And I had a massive headache (a common side effect of this procedure).  I've shared a lot, but frankly, I'm entitled to some medical, as well as some emotional, privacy.  Please respect that. 

Sorry.  Moving on.  Can you tell me why you were manufactured?   

Well, sometimes kids get sick, and not sick like need to stay home a day or two and nurse a sore throat or a stomach bug.  They get sick and need to be in and out of school, sometimes for long periods of time.  They may need to have treatment outside their home in the hospital for days, weeks, sometimes even months at a time.  

So you go to the hospital?

Not exactly.  A lot of hospitals is where kids first meet a monkey like me.  But since a sick kid has to be in the hospital so much, and since they may not feel like going to school even when they are at home and not the hospital, I go to school for them, and sit in their chair.

Sitting in a chair doesn't sound so difficult.

It's harder than you think.  First of all, I represent a sick child, which always weighs heavily on me.  Second, kids aren't used to seeing a monkey at school.  A big part of why I come to school is to represent the sick child, but people don't always understand.  I worry they won't accept me as a part of their class.  And I keep growing fur….it's just part of my condition….and I worry that they might make fun of me.

Is the classwork difficult?   

 Actually, all the classwork gets passed on to the kid.  You never stop learning, no matter how old you are.  There's a teacher at the hospital, and the classroom teacher has visited Sam up in Wisconsin, not just for classwork, but to show support as well.  Readin', 'Riting, 'Rithmatic, and 'Rsitting were all prerequisites to being accepted into the Monkey In My Chair program, so I could do it, but that's not really my job.  My job is to represent Sam, be part of the class for him when he can't be, be a connection for Sam to the class, and educate kids who may not understand why Sam has to be gone or what he's going through.

I understand they offer Spanish at this school.

Si.

When people ask about you does it bother you? 

I feel the love, but there are times I wish I had a little more privacy (clothes, anyone?  Seriously…….)  People love and pray and are worried, but the Sommers have so much on their plates.  I know they mean well, and I'm happy to play the role I do.  Thankfully they know everyone understands if they don't get an answer right away.

Why aren't you bald, and does it bother you to have so much fur?

Not really.  I've got fur.  On my head, on my feet, everywhere. Having so much fur everywhere-and I mean fur EVERYWHERE-is just what's expected during treatment.  Lots of others have fur, too.  It's one of the things I was worried about when I first started going to school, but everyone has adjusted well.  Not to worry, it can always be shaved back off! 

How did you feel when Sam was in remission?

I was ecstatic!  Sure, I knew I was going to miss the love and good vibes of everyone at school, but it was time for Superman Sam to just be Sam and go to school and sit in his own chair.  Ultimately my purpose is to educate others about a child's illness, and help the child who is in treatment feel like they're still part of what's going on at home and at school.

Please describe those 5 months.  

After the initial hoopla wore down, it actually got kinda lonely.  I didn't go to school.  And I don't want to 'kvetch' (living with two Rabbis has been a learning experience), but everyone has been so focused on Sam, his parents, his siblings, and even the new turtle that I haven't always been given the love and attention I need.  Actually, my biggest complaint has to do with frankly some abuse I've endured.  Handing me over to the littlest Sommer* kept the creature busy and out of the hair (even the father who doesn't have any!) of the bigger humans.  But as much as I've been kissed, I've also been drooled on and munched.  Further, as I am told is typical of these 'higher level primates', this one is a toddler, and prone to outbursts, verbal and physical.  He screeches when he doesn't get what he wants.  And when the zookeepers weren't looking, I was thrown during what I understand is termed a 'tantrum'.  But to be totally honest with you, deep down I was happy that Sam was happy and able to go to school himself, so I didn't really mind.

How did you feel when Sam began to have pains again?  When you got confirmation he had relapsed?

Really scared.  And not just because I might literally be 'the monkey in the middle' of a tug of war between a toddler and an adult sending me off to school, but because of what I knew that might mean for Sam and his family.   And to be entirely honest with you, I was angry.  Angry that I wasn't able to fix this, and that cancer and other illnesses strike kids to begin with.  I wish there was no need for me.  Ever.  For any family.  Frankly I'd been enjoying the benign neglect under the bed and at the back of the closet.  Seeing the light of day isn't always a good thing.  The humans talk a good game, but I see their worry.  I see their pain.  They talk a good game.  I know they are surrounded by family, friends, loved ones and wonderful medical staff.  But ultimately there's only so much I, or anyone, can do.  I hope that being here helps them in some way.

What do you do with your days and nights now?  

Check out the pics online.  None of these 'adults' seem brave enough to confront the toddler over custody of me.  But school is still sending thoughts and prayers to Sam and family, so I guess the purpose for which I was created has been filled.

Anything else you want to share?

Yes, I'm feeling a little nauseous.  Please hang a banana bag!

*This part made me laugh so hard that I didn't have the heart to take it out but I have to clarify that Solly does, in fact, have his own monkey. George stayed at school through the whole five month period, albeit way up high on a shelf. We were thinking that he could stay at school for another kid who someday might need his services. We didn't imagine that Sammy would need him again. Sigh. 

Mellow {day 11}

Today was another mellow, happy day for Mr. Sam.

He had a wonderful visit from his friend Asher and Mrs. P, his art teacher (who happens to be Asher's mom -- how cool is that?!) and they did some great creative work together.

Sam spent a lot of the day moving beyond the States and into the Countries -- Stack the Countries, that is. It's funny to walk laps with Sam and discuss what he's learned. Hearing him pronounce the names of countries (Russia? Try pronouncing it how an emerging reader would do it...) makes me giggle, and I know it makes the staff giggle as they listen to our conversations. I think we serve as an excellent source of entertainment for many members of the staff!

Do you notice Sam's amazing quilt made for him by the Devorah ladies? He loves it and so do I!

Yael and Grandma also came for a little visit (and she went out with me and Bubbie for a little girls' time while Grandma worked on countries with Sam), and the day was pronounced "good."
(Our school had early release, hence the school-age visitors on a school day. Sam pointed out that summertime will be much better for weekday visitors!)

In today's mail, Sam was deputized as Junior Deputy U.S. Marshal. I feel safer already in our room!
He thought that was incredibly cool. We spent a little time discussing, however, that his acceptance of the certificate did not mean that he was required to choose this as a future career path. He seemed relieved. (With thanks to Dad's friend, A, who set this one up for our little future lawyer!)

Protector of the Pole

He's still hungry a lot, as I said yesterday, but I keep trying to convince him to eat something other than McDonald's. Today I did one of those sneaky-mama things. He asked for some pretzels and not only did I order pretzels, but also a string cheese and a peanut butter and jelly sandwich. When it came, I just put it all in front of him and he ate it! Sneaky but effective, right?

Sam is feeling well but he is just a little bit tired out. This is totally to be expected (and a documented side effect of some of these drugs) and so he's chilling out tonight with a movie (Hotel Transylvania) and some snacks. We did get our nightly walk downstairs, but I think the whole thing just wore the poor kiddo out. I am taking this opportunity to write tonight's blog post a little early and hoping for a quiet night....

Still Swimming {day 10}

Yesterday and today were the holiday of Shavuot. Although we didn't observe in the most traditional manner, that's the reason there wasn't a post yesterday. We'll try to condense two active days into this one post!

So things have been going very well here in our little nest in Wisconsin.
I was able to get out in the beautiful weather for a run...

 I went to my favorite local crunchy-granola food co-op....

 And I spent a lot of time providing food and other entertainment for Mr. Sam.

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MOM! This blog is not about YOU! This blog is about ME, Sam!

What? Sam!? You can't just steal the keyboard away from me. Don't you think that people want to hear what I am doing in the hospital? They hear about you all the time. What about me? Maybe it's time to write a blog post about MY fun.
Mom. Please. Stop telling about you and tell them about me.
Sam...why don't you tell them!?
Fine. I will. I have had a great two days. I feel pretty good. I am only sick to my stomach a little.
I am reading a chapter book -- How To Train Your Dragon. All by myself. 
Um, maybe a little help from me?
Mom. Stay out of it.

 I like to eat mac and cheese and watch TV. I also like to eat chicken nuggets. I have made mom go out a few times to get them. See that big dog I'm sitting on? My friend Johnny brought it for me. It is big and fuzzy.

 Oh, there's Johnny. We had a lot of fun hanging out together.

I made a new friend and we got to do school together today. Can you tell which one is me? 
(He's the one on the left.)
Mom! Don't give away all the answers. 
We hung out most of the day today and played! I taught him to play Stack the States.
I did 24 laps too. I did 14 with Zeyde. Bubbie worked on her knitting.

 Then Karen came to visit. She read me books. She brings GREAT books.

 My favorite part of each day is when I am unhooked from my pole and we can go downstairs and even go outside. We ate in the cafeteria. I like their tomato slices.

 We looked at bugs. I like them. Mom worries that I should wash my hands a lot.
I don't even want to think what the oncologists would say if they saw this picture.

Things are good. I like getting mail. I like reading books. I like annoying my mom.
I learned how to send emails to Dad and Grandma and I used my toes to type. I have good toes. 

Anything else you want to say, Sam?
No. I'm good. I'm going back to my movie now.
Thanks, Sammy :-)

 Medically, Sam is doing quite well. The doctors are pleased with his response to the chemo so far. They reminded me today that minimal side effects do not in any way mean that the chemo is not doing its job. Every "healthy" day is good -- every opportunity to gain or maintain strength. Sam is eating quite well, which may have something to do with the steroid that is a part of this protocol. While I'm not complaining....I spend a lot of time preparing and/or acquiring food! Either way, it's far better than the alternatives.

And so we just keep swimming along here in our little sea of Cancerland. It was quite lovely to watch Sam spend most of the day with the other little boy and have so much social time! It makes the hours fly by when there's a friend on hand. It was pretty surreal to have two poles and two bald kids...but the other mom and I also enjoyed spending time together. (You will all find it not hard to believe that I taught her how to use Facebook. And you might laugh at that also!) There are silver linings to everything, and to know that other families "get" what we are going through in the most deep and personal way...our lives would never intersect in any other way, but here we are, all connected forever by the beast that is childhood disease.

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