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....

Here we go again

Everyone who sees us gives us a little sad smile.

Relapse SUCKS.
I think it might suck more than the initial diagnosis. I will have to consider which one has more suckitude. I will work on some higher-level vocabulary, too, okay?

There had been such joy, such exuberance, such hope for a future filled with normal counts.

Crashing down....and let me tell you, it landed the hardest on Sam. The kid is ticked off.


And yet...he was a super gem of a kid today.
He said please and thank you and he told me that maybe he could be the top of the lap-counting board this month. He hasn't exactly been happy to see anyone, but he hasn't been yelling either.

As I type this, he's remembered that Sponge Bob is usually on tv in the pre-bedtime hours.
He's drinking one of my famous hospital-hot-chocolate-concoctions. (It might contain a whole carton of whole milk.) The routines are the same. The hand-washing. The beeping IV pumps. The parent badge is slightly new and improved. Hey, it's the little things, right?

Today was a spinal tap, complete with a triple cocktail of intrathecal chemotherapy (that's drugs inserted directly into the spinal fluid to combat any stealthy leukemia that might be lurking in there). If you'll recall, Sam has had some trouble with the headache that often follows a spinal tap, so I repeated over and over our mantra to increase fluids and use a really small needle.

Along with the spinal tap, since they like to sandwich these things and put him under as few times as possible, was the insertion of his new central line, with its two lumens, or tubes. Totally tubular!!! (oy...laugh or cry, people, laugh or cry.)

His platelets were a little low, so they ordered a dose of those before they would do the procedures. Platelets help with blood clotting, so they're relatively useful when having surgery performed on you.

All of that led to a verrrrrrryyyyyyy long day spent waiting for the procedure, which finally got underway about 2:30pm, and went very well. So far so good on the headache.

The staff were so impressed with his fabulous head of hair, and how tall he has gotten in just the few short months since they saw him last.

nurse, pole, hospital bed...yep, we're back.

We're in an east-facing room. I like to think it's because we asked....

the view from here

So we're open for business. Full-body chemotherapy inserted through the brand-spanking-new central line begins tomorrow. There will be a new drug added into the ones Sam has had before. I'm sure that beautiful hair will be gone before we know it. Sigh. Hair grows back. (Speaking of hair, he was going to cut it anyway.)

Sam loved all the mail before....so let's try this again:
Sam Sommer, E584
Children's Hospital of Wisconsin
P.O. Box 1997
Milwaukee, Wisconsin 53201-1997

It totally brought him so much light each time the mail delivery came, so thank you.
Michael and I both felt such love over the last few days -- to see the Superman pics on Facebook totally filled us up with the blessing of our community of family and friends far and wide. Thank you.

P.S. New chapter, new blog header....if you're reading in an email click over to check it out! #whatmamabloggersdo

The Post You Didn't Want To Read

Alternative titles:
Hello, Cancer, My Old Friend Enemy
Welcome back to Cancerland
Relapse: Cancerland, Chapter 2
This Sucks Sucks Sucks

Michael and I spent quite a bit of time coming up with titles for this post that we didn't want to ever have to write.

We are absolutely heartbroken to report that Sam's leukemia has returned.

Remember that "false alarm" from a month ago?
On Tuesday night, during the second Seder, Sam told us he was in the same kind of pain.
Considering that they had visited Pump It Up that day, we were relatively unconcerned...

Until the pain kept him up all night. And by him, of course, I mean him and his parents.

For three nights. An x-ray on Thursday morning at Highland Park Hospital revealed no fractures (whew) so we waited until our scheduled checkup on Friday to go up to Children's.

By 5:30am on Friday morning, we were toast. So Sam and I packed it up and left for our appointment quite a bit early. They were incredible, and took us into the clinic way before our scheduled time.

Frankly, I took one look at our doctor's face as he came in to tell me about the blood test results and I knew what the answer was.

"There are some cells on the smear that we don't like. We'd like to do a bone marrow biopsy to be sure, but we believe that the leukemia has relapsed."

Relapse sounds a lot like collapse, which is pretty much what I felt like doing.

So we waited around all day for the biopsy...I will spare you the saga of keeping Sam from drinking and eating for the whole day.

The biopsy results were exactly as we'd feared.
Leukemia, relapse.

There's something interesting about this relapse business. It's not quite the same as when we came in the first time. That time, we were totally scared, overwhelmed and felt, as a friend said, like we'd fallen down Alice's rabbit hole. This time, the rabbit hole is more familiar and it's populated with people we have come to know, love, and, most importantly, trust.

Our people came out of the woodwork. Nurses and nurse practitioners and doctors came to see us as we waited. We felt cared for and protected. I think that last time I felt like it was "us" against "them." Now I know, with the utmost of certainty, that we are all on the same team.

The team is already in place.
The learning curve will, for the beginning at least, be gentle.
The HOT unit is still there, we're hoping for an east-facing room.
(See? We know what rooms are the "good" ones.)
As I said to Sam, we know how to make hot chocolate, we know the code to the secret elevators, we know how to work the televisions. What more do we need?

Sam is, understandably, incredibly upset. I have no words for the task of explaining to my 7-year-old that the cancer is back. So I chickened out and made the doctor do it.

Some details, a plan, a treatment....

They sent us home for the weekend. Hospital weekends, especially holiday weekends, are pretty awful.   (They said a few days won't kill him. Terrible cancer humor, but laughing is what keeps us going.)

So we headed home, to return to CHW on Monday.

To insert a new central line.
To start chemo.

Our new challenge: the treatment for the relapse of AML is, ultimately, bone marrow transplant. We don't know exactly how or what that will be like for our family, but I am quite blessed to know that we have some perfect matches within our own family. This does not mean that YOU should not be on the bone marrow registry. Do it in Sam's honor - don't wait. I canNOT imagine being told that your child needs a bone marrow transplant and NOT having the luxury, as we do, to have family donors. More on this later as we learn more from our doctors. It is new for us and frankly, very scary. But we have the BEST doctors in the country on the case. Seriously. People come from all over the country for a bone marrow transplant in Milwaukee.

This is the beginning of the second chapter of our Cancerland journey.
Thank you for being there with us.

Buzz Cuts for Cancer

If you'd like to participate by cutting your hair for Locks of Love, Pantene Beautiful Lengths or Buzz Cuts for Cancer on May 19th at Am Shalom, please contact me at phylliss at amshalom.com

 To sponsor David & Sam or make a donation to the MACC Fund for our project, please to go: http://teammaccfund.kintera.org/amshalombuzzcuts

No Worries Here

Crossposted to Ima on and off the Bima

Tuesday, 2:23pm: Snow is falling thickly outside. Afterschool activities have already been cancelled. I'm in my comfy clothes, working on the computer while Solly naps. When the phone rings, and I see that it's the school, I assume it has to do with the snow.

School nurse: Hi, I have Sam here and he says his knee hurts. And he is worried because it's just like before.

If I tell you that I nearly dropped the phone...if I tell you that I burst into tears...if I tell you those things, I know you would forgive me for losing my cool.

I asked to talk to Sam. In a very calm, small, quiet voice, he said, "Mom, it feels just like when I was first diagnosed."

I swallowed hard.
My seven-year-old knows the word "diagnosed" and uses it properly in a sentence.
We discussed whether he should stay at school or not. With the snowstorm, and only about 45 minutes left in school, he decided to miss gym but rejoin his class for music.

And I called the clinic.
In tears.

They were, as usual, amazing.
As a fellow pediatric-illness-parent-friend said to me, they know every nook and cranny of the cliffs that we are ready to jump off. This one was a pick-up-my-kid-in-a-near-blizzard-and-drive-all-the-way-to-Milwaukee-for-an-MRI kind of cliff.

But they talked me down. He had gymnastics on Monday. Maybe he wrenched it? His joints and bones could be affected by the chemo and this could just be residual effects. It could just be normal-kid-aches-and-pains.

Sam had a clinic appointment scheduled for today, Friday. A regular check-up. The ones that I'm not supposed to worry about. The ones that they told me were just for routine.
That we would notice symptoms if anything was happening.

Tuesday night, he limped around. He took a bath. He snuggled while we read Ramona Forever.
As he went to bed...he said, "I hope it's not leukemia."

I said, "me too."

By Thursday, he was fine. No pain. Except the one inside my stomach, waiting to have a medical professional PROVE to me that he was fine.

I was up all night last night waiting for today's drive to Milwaukee. What would the results say?

It's all fine. He's fine.
Numbers normal.
No worries.

Well, not at least until next time there's a false alarm, right?

Chocolate pudding & a movie at 10am? You know we're in Cancerland for the day.

Ring The Bell!

I've learned that most cancer treatment clinics have their own tradition to signal the end of treatment. At our clinic, there's a bell that kids ring with their last chemo treatment. Since Sam's last treatment was completed in-patient, it's typical for AML kids to wait to ring the bell until they're back home, line removed, and "in the clear."

Which Sam is!!!!!!!!!!!!!!!!!!!!

So on January 4, Sam rang that bell.

And it was one of the sweetest sounds we've ever heard.

Our friend Anne led Sam in the ritual of reciting Birkat HaGomel, a prayer said when one survives an ordeal. I'm quite sure that this was a first for the clinic!

Doctors, nurses, friends and family were all there.

What's a party without cupcakes?

A little post-bell-ringing lunch celebration

Sam actually witnessed a couple of bell-ringings before his turn, and so he was inspired and knew what a big deal it would be. In addition to our beloved family, friends, and medical staff, we were also so happy to share the experience with two young friends (and their moms) who are nearing the end of their own treatment. To hope that Sam's experience can continue to be an inspiration, and to be able to say the words "soon by you" to each of these friends...was sweet and hopeful, a blessing for us all. To Jake and to Grace, we send you love and blessing as well as prayers of continued healing.

We continue to try to express our gratitude for Sam's health, for the love and prayers and help that all of you have given to us...and we continue to fall short of any ability to fully thank each and every one of you.

And so we say it yet again.
Thank you.

P.S. A small project that we've taken on in honor of Sam's bell ringing: 

The MACC Fund Center for Cancer and Blood Disorders is the clinic at Children's​ Hospital of Wisconsin through which Sam's treatment was completed.​ Many of the children receive outpatient​ treatment through the clinic, and we will be going there regularly for our checkup visits. The clinic has told us that they are in need of movies for patients, particular​ly teenagers.​ We have compiled a wish list on Amazon and hope that you will help us purchase the movies. 

Some of the films on the list will help to round out their collection​ - for example, they have 3 of the Harry Potter films but not the whole set. The movies will be sent to us and we will deliver them directly to the hospital! If you want to buy movies and drop them off at our house or office, you can do that too. Just let us know so we take them off this list. Any duplicate films will be given to the HOT Unit or the Soref Family Resource Center but we hope to do separate lists for those two entities. Thank you so much for your generosity​ and help. Please feel free to share this list with family and friends!