L' Chaim. In Hebrew it means "To Life." We use it as a toast: to your health, to your life, to your healthy life. In our family it has a special significance. Never more so than this Saturday, April 18, 2009.

Here's why ... we will claim a huge victory for life. L' Chaim!

My nephew Alex is a special kid. He has a kind, generous heart. A powerful brain. Insatiable curiosity. He thinks and reads and talks and evaluates. He has big appetites, for fun, for food, for family, for friends. A great sense of humor. A raucous laugh. And, oh, Alex has such a shining, beautiful spirit. 

Here's what else Alex has ... cancer.

A rare disease called VHL. Which he is determined to beat. L' Chaim.

Lately he's been acting a bit contrary. Arguing about everything. His chores, his homework, his sister, the dog. He's cranky. He's messy. He's restless. He's just turning 13. Well, there you go, that explains a lot.

Here's what else explains it ... this Saturday is his bar mitzvah. L' Chaim!

Yes, a bar mitzvah is a milestone in every Jewish boy's life. For our Alex, it's a miracle too. There was a time we wondered if he'd ever see this day. Now we look forward to it with wonder. And gratitude.

Everybody's been going about our regular routines, preparations, last minute responsibilities. Get the clothes from the cleaners, check the final guest list, pick up a few gifts for nieces and nephews, buy shoe polish, lay in supplies for visiting family.

Alex is practicing his part, as all bar mitzvah boys do, up to the last minute. His mother and her mother (my older sister Judy) are practicing the special broucha (blessing) they will sing together as the Arc is opened and the Torah displayed. His father and his almost-11-year-old sister Amy are practicing their brouchas too.

 

Judy, Alex's and Amy's precious "Grammy" has been there all week, helping and spending quality time. "Grandma and Grandpa A", Dad's parents, plus brothers, sisters, aunts, uncles and cousins are starting to arrive, staying busy catching up, as usual.

Here's what else we're doing ... remembering. Please, please, L' Chaim.

Nine years ago last month we gathered in a Children's Hospital Family Room. Not for business as usual, not to catch up. To wait. To pray. To hope. To deny. To plead. To distract. To hope, to hope, to hope.

For 14 hours we held vigil while a medical team of more than 20 worked to remove an enormous tumor from Alex's brain and right ear.

It's a memory no one should ever have, not a parent, a grandparent, a sister, an aunt. It seems so long ago, yet every detail is clear, vivid, perhaps even more horrifying in retrospect. When you're in the moment you don't, you can't stop to view it, to see the enormity of it. You can only try to get through it, one minute at a time. One hour at a time. One day at a time.

I told most of the story here last year Alex's Lemonade - Elixir of Life.  It is horrifying and yet uplifting too. Collateral damage: hearing gone, face partially paralyzed. But. Life saved. We hope. In my story I talked about courage, pain, resilience, fear, love, support, normalcy, uncertainty.

Here's what else I talked about ... tumors. Enough! Instead, L' Chaim.

Because five years later, more tumors, on his spine, in his eyes. I asked for healing thoughts, promised an update. Unfortunately, not so good. More tumors in his eyes, more laser surgery, less vision, more need for glasses. And more vigilence.

I've chronicled the ups and downs, the progress and setbacks. On the VHL web site, there's a page dedicated to Alex. It includes a link to Aunt Sally's Blog. I am so proud to contribute, even in this small way, to the fight against VHL. For Alex. For our family. For life.

This disease, this tormentor, this tumor-maker, this VHL stalks the eyes, the brain, the spine, the liver. Crouches. Pounces. For those with VHL the saga never ends. The fear remains. It's a bad soap opera, a medical miasma, a trial of patience, a living nightmare of tests and scans and surgeries.

Here's what else it is ... an opportunity to survive and grow. L' Chaim!

  
(Alex grew his hair long to donate to Locks of Love). 

I learned that from Alex, who refuses to surrender, instead focuses on helping others, writes poems of hope and challenges and dreams. And he is a survivor, strong and determined, approaching his 13th birthday and his bar mitzvah as he does everything, con gusto.

Cancer, kids, birthdays. Words that shouldn't be used in the same sentence. But in this case, an exception. Because to a kid with cancer, every birthday is a gift. And this special birthday, this bar mitzvah, this celebration of life is a gift to our whole family.