Sunday, March 2, 2014

Hair Today

Saturday began the last month in which I will have a full head of hair.
You read that right.
On April 1, I will be shaving my head.
I've alluded to it before, I've talked around it.
But it's almost here. And I think it's time to share my thoughts.

Hair has always been an important part of our family. My chidren have strong opinions about their own hair, and how it should look. 
Sammy's first haircut 
After the lice-shaving incident, everyone was reluctant to get a haircut. This is Sammy's shaggy look.

For Sam, losing his hair was a big deal at first. I think it was more the idea of the change, rather than the actual hair loss. It changed how he looked, and it changed how people looked at him. Throughout his treatment, he was mostly bald, and then as it grew back after treatment, we noticed and celebrated.

And throughout all of last summer, his hair grew back after some of the heavy rounds of chemo, during the outpatient portion of his treatment. He actually had quite a bit of hair on his head when we headed into transplant (bottom right hand pic) and I think that helped him to feel more "normal" through the summer.

He shaved his own head for transplant, and it was quite piece.

At the very beginning of this terrible journey, someone suggested that I shave my head to raise money. Sam was totally opposed to it. I know that everything in his life seemed so topsy-turvy, having my head look completely different would be one more terribly weird change. So I dropped the idea, but I marveled at the photos of the 46 Mommas who Shave For the Brave...and I thought that maybe someday...maybe.

When Sammy was in the hospital back in October, I was feeling helpless and frustrated. I made t-shirts (and raised about $5000!), but that just didn't seem big enough. I posted a little idea to Facebook "maybe the time has come to shave my head." It seemed like it would be a BIG statement.

It's come to be something so much bigger. With Sammy's death, it has given me a purpose and focus to my desire to give this all meaning. I don't want to hear that any of this terrible stuff happened for a reason, I really don't. And I do believe that I have a responsibility to make something happen because of it. (Which is far from the same thing.)

There are so many ways to help kids with cancer. There are so many ways to help their families and their caregivers. We have been the recipients of so much generosity throughout our whole experience. The patient and family support organizations are amazing, and made so many days so much brighter in the midst of so much gloom. I know that we will continue to support these organizations and their missions, and we want to make the world brighter for these families.

But if I'm being totally honest here, I know that there's only one thing that I can do to have real, lasting impact, and that's to raise money for research. The only way we are going to end this terror once and for all is with the research that will create better treatments, more effective protocols, and better long-term prospects for all survivors. By funding research, I know that I am putting my heart and soul into my own private goal of a day when no other parent will hear what we heard: "there's no more that we can do for your child."

And so I am shaving my head and raising money, along with a whole bunch of my friends and colleagues (including Michael...we will be the #baldestparentsontheblock), the 36 Rabbis Shave For the Brave.  (My feelings on how so many of our colleagues and friends have stepped up to join our cause will fill a whole other blog post...I am moved beyond words at this point.)
Sammy and his buddy Braeden (who now has awesome hair!), little bald heads learning together
When I walk around out in the world right now I'm feeling a little invisible. Not that people don't see me, trust me, they do. But on the outside, I look pretty much...the same. Much like Sammy as his hair grew in while he was still in treatment, I don't look like someone who is changed. Shaving my head, which will be 109 days after Sam's death, 658 days after I became a "cancer mom," will give me a whole new look. My grief will not be invisible.

And my visible grief will be so much bigger than just about me and so much bigger than just about Sammy. As of this writing, we've raised almost $360,000. To put it in perspective, a St. Baldricks' Scholar receives a three-year minimum grant at $110,000/year - our fundraising so far has almost fully funded a three-year St Baldricks' Scholar! Imagine the brain power and how much that can change the future, the face of childhood cancer. Every time someone asks about my head, about my hair, I will tell them about the research that my simple act of shaving was able to fund.

It's for Sam, yes. 

But this is NOT just about my Sammy. It's about every kid, about every family.

It's also for Cara and Ari and Jonah and Clio and Emma and Cookie and Renae and Sean and Isaac and Leah and Collin and Mia and Zachary and Emily and Jackson and Caleb and Nolan and Eric and Katherine and Braeden and Chloe and Pinky and Issy and Aidan and Hannah and Maddie and Erin and Dawson and Samantha and Browyn and Max and Eli (and Ezra, Jonah, Jake, Idan, Samantha, Connor, Rand and so many others who don't have cancer but whose treatments are so close to the same and who have benefited from the same research)....and those who, like Sam, are no longer with us physically...Bo and Ian and Jack and Kayleen and Donna and Talia and Tucker and Addison and Mya and Zach and Sophia and Sammy and Gabriella and Zach and Londyn and Caleb....

And so many more. So many that I can't even type all the names....

So here we go. Let's fund life-saving research.
One more month and I will be bravely bald. 
Will you support me along the way? 
The link to donate to my goal is here. No amount is too small to help fund the research that will save future kids from the hell that Sammy and our family have endured. 


  1. I remember when Sammy did his own 'do. I'll look forward to seeing yours too. I just found out that a neighbor of mine did this as well, when she was in college. <3

  2. with your help and g-ds help may the researchers find a cure to this horrible disease.

  3. THANK YOU for the 46 Mommas Shave for the Brave Shout-out! We're grateful that our efforts have inspired you to also go bald. We love the shout out as well, but your link above doesn't go tour site. It goes to a Kosher cooking page. Thanks!

  4. Shave away! Get that SuperSam trim, and I'll "shave" a little something off my bank account to make it worthwhile! (This blog is the first thing I click on any day, or night, or middle of the night, but my Internet is so slow it may take hours to respond, and the wonderful photos are the last things to appear; I've been working on this one since 5:00 o'clock this morning! So just know that, once you "SEND" or "PUBLISH," there's someone out there trying to "DOWNLOAD," no matter how long it takes.)

  5. I just called Ronnie Mac to see of I could volunteer massages to parents and caregivers during their stay. I hopefully will be doing it on the 14th day of each month. ... In honor of Sam.

  6. We don't know each other, but I wanted to let you know that because of Sam's story shared by a mutual friend, I was inspired to shave my head on March 9th at a St. Baldrick's event. I personally was able to raise $800 for the cause, and our event raised $60,430.95. Sam's story will live on in all of us. Blessings to you and yours.