Dad & Dinosuar Eggs {chemo day 5}

After a nice, warm welcome and a little intake of a "Dinosaur Egg" (aka Donut Hole) from Tom's Pastry in Highwood, Sam has been resting most of the afternoon. I arrived at around noon today, took notes from Uncle Josh (my brother, Sam's uncle), and took my place next to a very-glad-to-see-me Sam.

He's exhausted, was nauseous and now is resting. He was so excited to receive some incredible candy apples, iTunes cards (his favorite), games, books and books on CD. He loved the dragon poster I made him and put up some of the early Alien art that Eric Winter had sent us in the fall. It is quiet. All we hear is the sound of the constant clicking from one of his devices administering his meds and the airflow in the room.

Passover's over, but I feel like we got left with one of the plagues. I've been writing this in my head all week as I try to stay between ok and completely numb. Questions in my head just keep tumbling over each other of why this plague returned when everything was going so well. Now, really, I know there are no answers. I tell my friends, to comfort them, that there are no answers and I know in all my soul that there are no good answers. We are dealing with microbiological warfare on a galactic scale that few if any of us can comprehend. 


We watch movies where swarms of aliens overwhelm the good guys and our brains can't really fathom the numbers of enemies we see on the screen. We just check it off as a lot. Well from month four to month five of remission, Sammy's nemesis went from zero to too many in no weeks at all, enough to put extreme pressure on his knees again, trying to go from inside to outside of his bone marrow. 

How does a seven-year-old tell you "Dad, the pain is the same as last time. Take me to the hospital now"? As parents, we don't want to be "Those Parents" running him into the hospital every time he gets a small bruise or a runny nose. So we wait and see if he improves from Tuesday to Wednesday to Thursday's "ok it's-serious-enough-moment, let's get x-rays again to make sure he didn't really break something," to Friday's regularly scheduled appointment where the doctors tell us everything we fear and nothing we want to hear. 

And our world falls in on itself. The walls seem closer. I am crushed as I watch him fight his inner beasts in a real world struggle once again. 

In his darkest moments, curled up next to me on our couch,  Sammy would squeeze my heart as he pleaded "I just want to go home." "You are home," I would answer. "No, I mean my real home." I have no answer for that. I have no answer for my 7-year-old who wants to go home before a time of illnesses and hospitals and cancer. A home where there is no pain, just joy, play, school, siblings, friends and our perception of normal. 

I receive so many Why and How questions. I continue to answer "Whose kid would you give this to if it wasn't my kid?" or I fall back on the 5-year-old girl, Jacyln Santos-Sacramento, who was run over and crushed to death this past summer and remind them that it can always be worse. My son is fighting the good fight surrounded by an incredible medical staff, friends and family. Two families and many communities will feel Jaclyn's loss for all times. There are really no whys and no one wants the gritty details of the hows. 

How about we are a most blessed family that has access to the #4 ranked Children's Hospital in the nation. We have one of, if not THE top bone marrow transplant specialists in the country (WORLD) who has become a personal friend as much as he's become Sammy's transplant doctor. How about the fact that we are blessed with a match within our family and not struggling against time to find a willing donor somewhere in the rest of the world (GET SWABBED! You could be the match that saves someone else's life).

When friends ask questions and I answer that "I am doing ok," or "I'm hanging in there," I mean it. I'm not just brushing them off. I also answer "Do I have a choice?" Because the answer is, "No, I don't have a choice." This won't go away. Sam needs me now, more than ever. This too shall pass. We all know what the bad outcomes are, but are most fortunate to have so many good options of positive outcomes possible to help us visualize our way through this. I'm not putting my head in the sand. I'm not running away to far away destinations where I don't have to shoulder my responsibilities (although Vegas does sound really nice right about now). 

So I am here reporting for active duty for my day one on Team Sam. This is life. Messy happens. We always hate it when it happens to someone we love, but guess what? It almost always happens to someone we love or to ourselves. I signed up for this when Sam drew his first breath, smiled his first smile and called me "DaDa" for the first time (ok, not all on the same day). No one said this would be easy. Some days, raising my own kids, I am amazed my parents didn't just sell me to science as I remember my own childhood behavior. So despite all the days I would sell my kids to science they somehow still wake up most days with a smile that reminds me why I keep them.  

Sam will get through this. We will all get through this. There will be some amazing days and some not so amazing days. We will pray that the amazing days always outnumber the not so amazing days. So remember that you all give me the strength to be as strong as I am for Sam. Your prayers, hugs, love, food, homes, children, spontaneous play dates, and evenings of laughter keep us sane and keep us focused. I couldn't do any of this without all of you. So understand how important your job is in helping me be able to do my job. Even struggling, I am the most blessed human I know.

With infinite love and gratitude, 
M

Better {chemo day 4}

Today was better.

Thank GOODNESS.

Sam woke up and asked for a banana. Progress!
Then he asked for yogurt and cereal. Woo hoo!
(I love the way these simple food items can make not only me, but our whole team of nurses, doctors and nutritionists cheer. I love how they all feel so invested in Sam's well-being. I'm kinda in love with our new resident who doesn't know us from before but can tell that the rest of the team cares so deeply...so he does too.)

Sam tends to get a little bit "stuck" in the way that he's feeling and not test out the possibility that he could be feeling better...so when I said it was a good idea to go for a walk, he said, "no, it will make me feel yucky." How do you convince him....maybe it WON'T make you feel yucky this time and it's worth a try?!

Answer: a lot of cajoling.

But it worked. He is feeling much better, he told me. Whew.

Sam was testing out the grown-up-size exercise bike on the floor.

Uncle Josh is wrangling Sam as only he can, and since I left they've told me that it's possible that there will be a shaving party tonight in room E584. I await the pictures from these two crazy characters. Sam's price for head-shaving may be Uncle Josh's beard....poor Uncle Josh.

Might I remind you (and him) that Sam had planned to shave it all off anyway?

Desperately trying to make a glove-balloon bigger than the one Rabbi Steve made. It's good for his lungs!

In case you are new around here or maybe you forgot, you won't hear much from us over Shabbat....so we'll be back on Saturday night with more adventures from Cancerland.

Peeking Through {day 3}

sunrise from the 5th floor

 Sam had a less-sleepy day today. He was still feeling pretty crummy and under-the-weather, but he perked up when Rabbi Steve came to visit. After all, Rabbi Steve doesn't give up. He finally got Sam into position for a rousing game of Glove Volleyball. Our friend Matt served as referee to make sure that there was no cheating, and let the record show that Sam crushed the good rabbi.

 He was feeling so perky after that, he ate a few bites of banana and agreed to take a walk! Progress, I thought.

It was short-lived. That one little lap was a little too much for our hero today.
He landed back in bed, where he stayed, albeit awake, for the rest of the afternoon.
It did help to open a package with some funny glasses:

 We've been working on his anti-nausea meds, and hopefully we have those under control now. It's a combination of keeping the nausea at bay while not making him too sleepy. There are other meds that are available to us, so we're just going to wait and see what tomorrow brings. Unfortunately, oncologists are experts in nausea management.

 A whole bunch of wonderful sweets came into our room today, but none tempted my little guy. He did like the silly string that the art-cart-man delivered. Oy. In case you're wondering, silly string does wash out of your hair. Not that any got into my hair today...oh wait.

 One of his perkiest parts of the day was this FaceTime with Solly. Solly was so excited to tell Sammy that he was using Daddy's iPad for the experience. Sam was trying to explain back to him that he, too, was using an iPad. Can you believe that both of these children will never know life existed before this was possible!? It is one of the best blessings: to have them, at the drop of a hat, be able to communicate with each other even when so far apart.

It wasn't a great day for Sammy but it wasn't really a bad day either. My sparky little guy is peeking through...I can't wait for him to re-emerge with his usual energy level.

 P.S. Sam knows about the stories that have been sent to him but he's mostly been too sleepy to read his email. Don't worry, he will have plenty of time to listen and watch! He's looking forward to it! Thanks to everyone :-) It was all Michael's idea and we are all so excited that you all loved it!

Oh So Sleepy {chemo day 2}

Sam had a bit of a rough night. The nausea kept him restless and uncomfortable, along with the fever that we believe is caused by one of the chemotherapy drugs. (I say that "we believe" because just in case it is an infection, they started a course of broad spectrum antibiotics and took cultures to check.)

So he spent most of the day sleeping. And resting. And sleeping some more.

His body is working superhard. This is the first time since last June that he's had leukemia in his body...and that must be why he's so tired and sick. That's what I keep telling myself, anyway. The medical people tend to agree with me.

It's just hard to recall how full of energy he was in the previous rounds. I'm waiting for his spark to come back.

But today was mostly spent resting.

I offered some distractions like books, movies, games....he wasn't much interested. A few times he perked up with a smile -- some not-so-funny jokes that I lamely tried to tell...he listened to a story on video sent by a friend....

Grandma read a few stories and tried to get him to play DragonVale. You know Sam is under the weather when you can't get him to talk about dragon-breeding.

Sam always likes his baths, so I suggested we try that this afternoon and he agreed. It didn't quite make him as comfy as I think he hoped it would, and he quickly got back into bed. Which is where he is right now...the nurses and doctors seem a little unconcerned, I think this is a "normal" reaction to this kind of leukemia relapse.

And so we rest, snuggled into our little nest on the 5th floor...hoping to sleep off the chemo, which has six more days ahead of us. I like quiet. I really do. But I'm realizing how much I miss my bouncy, high-energy Sam who resists bedtime. I know he'll be back.

Blessings Amidst the Storm

When Sammy was in the hospital last summer an artist from South Bend, Indiana, heard about him and sent him some posters he illustrated with Sam as a comic book hero. Eric Winter created and sent Sam some posters, pictures and t-shirts of Superman Sam & Mega Turtle Battling Cancer. 

Now, honestly, there were so many incredible images, photos and gifts sent to Sam during the months that simply filled our hearts with love and gratitude. We loved them all, and they meant the world to us in our attempt to brighten a bleak time in our lives. 

It so happened, however, that I had an idea for a book I wanted to create. Phyllis provided me with Eric's twitter information (@EricWinter) and I tweeted how much I loved his work and talent. I also told him how much Sam loved the posters and t-shirts. I then asked if he would ever be interested in illustrating a children's book. Long story short...we decided to work together to create a blessing out of Sam's struggle. 

A few weeks ago, after five months of working together and communicating via email, Eric and I have completed our first book together. Timing being everything, I am proud to announce that iTunes just approved our first book for sale in the iBooks store today, Alef is for Alien. This is a beginner book for kids of all ages who wish to learn the Hebrew alphabet in a fun, digital and dynamic way. 

  

So my eternal gratitude goes out to Eric and his family for all their love and support of Sammy, a boy they've never met, but took into their lives as one of their own. Eric's incredible talent stuns me every time he sends me new proofs. 

From Sammy's illness to Eric's reaching out to our family, all of this illustrates how small the world truly is if we choose to reach out and make a difference in someone else's life. Everyone who follows Sammy's blog or took the time to send in a card, a picture or a little something reminded us that we were never alone. Something good should always come out of something bad. Whether we get more involved in a cause, donate time or money or just send well wishes, how we react to challenging times changes not just our lives, but the lives of the people who are touched by our generosity. 

My hope is to someday see sales of our book reach above 100,000 so that I can fully begin to repay Eric for all his time and effort and all the love with which he showered my Sammy.

Eric and I hope to develop a second book soon, specifically to raise funds for the MACC Fund and all their work to cure childhood cancer. 

So here's to family, friendship, partnerships and working together to change the world. 

I wish Sammy never had to deal with what no 7 year-old child should have to deal with in their lives. Truly I wish no child or family ever had to suffer in this way. But out of all this much good as occurred, and for that I am eternally grateful. 

A, B, D - No C {chemo, day 1}

Since Sam wasn't yet on any meds, it was a pretty quiet night.
Shocking, right? Who sleeps well in the hospital? Well, we did. Thank goodness.

Before starting chemo, they needed to do an Echo and EKG, to check Sam's heart function. Chemo can be rough on the heart, so they want to have a baseline reading beforehand. The doctor said he has a "beautiful heart." We already knew that....

I'm such a mean mom. I made him walk there.
(And by "there," I mean from our fifth-floor room to the second floor heart clinic.)
And back.
He only stopped to rest 4 or 5 times.
Maybe I am mean.

Punching in the code to the "secret" elevator

You have to remember how to hold onto your lines and avoid stepping on them. These are things you never wanted to have to remember.

Either way, it got him moving, and we played a rousing game of Hide-and-Find (with stuffed germs) after we returned to our room.

Chemo started in the afternoon and it wiped Sam out.

Poor baby.

It's much the same kind of chemo that Sam got before accompanied by a new drug that is meant as an enhancer of the other drugs. One of these drugs is bad for the eyes, so Sam has regularly scheduled eye drops. The new drug has an interesting issue. It can be inhibited in its effectiveness by too much Vitamin C and antioxidants in the body. This means that Sam has to limit (or even avoid entirely) Vitamin C and antioxidants. No fruit, except apples and bananas. No leafy green vegetables. No foods with high doses of added Vitamin C, like enriched foods -- Carnation Instant Breakfast, for example, which is the main ingredient in my super-secret-recipe world-famous-hospital-grade-high-nutrition hot chocolate. Oy vey. (And no fruit snacks, no fruit rollups, no juice boxes, no orange juice....)

But it's only for the 8 days of chemotherapy. So we can make this work.

A little fever at the end of the night got Sam his first dose of IV antibiotics and we're hoping for another quiet night. What are the odds of two in a row?

You Asked, We Answer

Hoping to answer some of the questions that we've gotten lately....
Some questions might be answered by this post from last year.

How did you know the leukemia was back?

Sam had bone pain, similar to when he was first diagnosed. Blood tests confirmed that something was up, and a bone marrow biopsy made the diagnosis definite.  

Was this expected/normal/is this what happens?

Sigh. Unfortunately, AML is the nastier kind of childhood leukemia. The relapse rates are higher than the more common kind, which has a longer treatment period but a much smaller relapse rate. The success with which Sam sailed through his four rounds of chemo did not have much to do with it, nothing really had anything to do with it. It's just yucky.

Why bone marrow transplant? Can't you just do four more rounds of chemo?

Sadly, no. The outcomes after relapse are not so good without transplant, they tell me. Dr. M, the BMT (that's bone marrow transplant in hospital-speak) King, has told me from the very beginning that this is Plan B. And that is is a very good Plan B. Even thought it is scary. Super-scary.

How did you know that you have a match? Which kid?

Because AML is so likely to need BMT (testing your hospital-speak here), they tested the whole family immediately following diagnosis. We just held onto the information but now we need it. We're keeping the identity of the donor a private family matter for a whole bunch of reasons.

Are you on the Bone Marrow Registry? We sincerely hope so. We can't imagine what it would be like to be told that your child needs a transplant and there isn't a match. Please register yourself. You might save a life.


How long will this take?

Great question, one that I don't have a real answer for. In order to start BMT, Sam needs to be in remission. No leukemia present in his marrow. According to Dr. M, it has to be a "good remission." The definition of "good" is a talmudic one -- meaning that there are a variety of opinions. Dr. M and Dr. K, our oncologist, will duke it out and make the ultimate decisions based on what is best for Sam. It's probably one or two rounds of chemo before transplant. Transplant is a LONG process.

Will you stay in Milwaukee? Do you need other opinions? Why Milwaukee?

We are here in Milwaukee (even though we live in Chicagoland) by a series of events and we are very comfortable with our care and the team here. We have absolutely THE BEST doctors. People come from all over the country to work with this BMT team, like our friends from California. This is the place for us to be. And, it feels a little like Cheers.

How does transplant work?

Ooh, it's kinda amazing that the cells just know what to do. I will have to explain more on this as I learn more and as we get closer. Trust me, it is incredible magic.

What's his Hebrew name? (Why do I care?)

It's traditional to offer Jewish prayers for healing using the person's Hebrew name, specifically his Hebrew name with maternal lineage. I have realized that while this might be traditional, it doesn't quite fit with our conception of equality -- so you will see Sam's Hebrew name at the top of the blog with both of his parents' names accompanying his.

Shmuel Asher ben haRav Michael Aharon v'haRav Pesah Esther
(it's a long name, huh?)

I also believe that prayer is prayer. Feel free to pray in whatever language, whatever tradition, whatever way you believe....

What can we do to help? Tell me more about Sam.

Sam loves mail, with funny jokes or your favorite stories. He loves reading and stickers and crafts and drawing. He loves turtles and frogs and other creepy crawly animals (shudder). He plays DragonVale and watches Fairly OddParents. While we call this blog Superman Sam, he's not obsessed with superheroes. He just IS our superhero.

A new project idea: Do you have a favorite book or story? We think it would be fun to post videos of yourself (kids too!) reading a favorite book or telling a favorite story to Sam -- you could email them to supermansam118 at gmail.com or share them with us on Facebook - Phyllis or Michael.

There are lots of ways to help the organizations that are helping us. There are so many amazing people who are helping us out and you can contact our synagogues - Am Shalom (847-835-4800) or B'nai Torah (847-433-7100) to learn more.

I'm new around here. What's up with the blog?

Phyllis is a blogger (Michael is too!), so blogging is comfortable for us. It's a way for us to share our story. If you'd like to receive these blog posts via email, just fill your name in at the top of the blog where it says "follow by email."

More questions will be answered as they come up....