Stories From A Life

Been there. Done that. Writing about it.

Sally Swift

Sally Swift
Location
Philadelphia, Pennsylvania, USA
Birthday
June 14
Title
VP, Repartee
Company
Swift Retorts
Bio
sally: a journey, a venture, an expression of feeling, an outburst, a quip, a wisecrack ... me

MY RECENT POSTS

APRIL 17, 2009 1:47PM

Here's To Alex, To Life, L' Chaim!

Rate: 37 Flag

 school

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.

teen 

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.

J&K 

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.

A 3 

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.

A&A

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.

alex vhl

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!

a long hair  
(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.

tallis bag 
(Grammy needlepointed a Tallis Bag for Alex. This is the first draft. If you read Hebrew you'll see his name is Daniel, which she accidentally spelled from left to right. Oops. It got fixed).

It will not be a big, ostentatious, splashy bar mitzvah (we call those "coronations"). Our large family and special friends will fill the synagogue for the service, silently cheering Alex on, then fill the community room for a luncheon. We'll laugh and talk and share food and drink and memories and stories and love.

We will celebrate Alex's bar mitzvah as a rite of passage, a Jewish tradition, recognition that under Jewish law, Alex has become a man.

Here's what else we'll celebrate ... Alex is alive and thriving.

L' Chaim, Alex! To a long, healthy life.


VHL Family Alliance - Cancer Research Fund - Alex Anderson's Fundraising Page


A's 

PS Alex, his sister and his parents take comfort and strength from my posts about him. They especially appreciate the kind and generous comments. A few words, a congrats, a Mazel Tov, an atta boy, some positive thoughts here would mean a lot. Thank you.

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Comments

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Here's to hope for all who battle and win.
Mazel Tov, Alex and family! Love is the greatest gift there is in this life we have been so lucky to experience, and it sounds to me as though you're all bathed in it. May the Bar Mitzvah be everything everybody hopes it will be, but may Alex's wishes trump all!
God Bless that beautiful boy! Uhh...young man.
God bless Alex, and give him strength. And strength to his loved ones, too.
Mazel Tov! Thank you for sharing this, ((Sally)). And congrats to Alex-- what an inspiration. Love and blessings to you all!
To life, indeed.

Happy Birthday Alex.
Mazel Tov and L'Chaim.
L' Chaim and Mazel Tov - Alex, Sally, and Family - sending love, light, peace and strength. Thanks for sharing the story (ups and downs); we all learn from and with each other.
Many brouchas for Alex and family. Mazel tov on this most special occasion for him.

Thanks for keeping us up-to-date, Sally.

How does he feel about being able to stand in front of the Torah for the first time? (A rhetorical question, really. I know how he must feel. ;-D)

Thumbed for mitzvah-ness.
Mazel tov and L'Chaim!

All best to all the family at this wonderful time.
Alex, we're wishing you lots of happiness and good health for years and years to come!
Yes - L' Chaim, Alex! To a long, healthy life. What a beautiful young man! He's going to need a swat to keep the ladies away! Mazel Tov, and lots of hugs for the whole family. :)
Alex is a most inspriring young man. I am humbled to read about his brave battle. Here's to a wonderful family having a wonderful bar mitzvah day. Mazel tov Alex, Sally, and all!
Mazel tov to the entire family! What a joyous celebration you will have.
Mazel tov and congratulations, Alex! You surely have a special aunt.
To Alex, whose brave spirit continues to shine.
We're pulling for you Alex.

Best of wishes and I hope you have an incredible bar mitzvah.
God bless and keep all of you. What a wonderful and loving post. :)
Mazel Tov, congrats, atta boy, love and more to Alex and family. And Sally, thanks for sharing this with us.
Happy birthday Alex! enjoy your bar mitzbah with those who love you so, so much!! This is a story of strength, patience, love and more love. Thank you, Sally.
Happy Birthday Alex! What a gift your life is. Congratulations from my heart of hearts and my prayers are with you.
my best wishes, mazel tov!
Mazel Tov, indeed, and l'Chaim. Good wishes to everyone and good health, too. I think kids often handle these types of devastating illnesses with far more grace than adults who get sick, even though they would have cause to feel life is terribly unfair. Their attitude towards it is a real lesson.
He is adorable. Salud, Alex, from a fellow cancer survivor!
I want to eat that boy up, especially as he looks in the third-to-last picture. He reminds me of The Littlest Angel, a Hallmark special I remember from a thousand years ago. What a cool dude.
Cheers to ya Alex and prayers for you too. Congrats on the bar mitzvah and may you live a long and healthier life.
Beautiful story Sally. Very moving and heartfelt.
God bless him, his family and you for sharing this courageous story. My prayers will be lifted for him.

Monte
There is so much we take for granted -- the blessing of children(no matter how much they drive us crazy) and good health being right at the top of the list. Give Alex my love and tell him if he ever comes to the mountains, we'll rock out together.
What a menche!
Alex, blessing on you for teaching us about living!

Mazel Tov!

(And pretend all the people in the shul are naked while you are on the Bimah!)
Happy Birthday, Alex. To Life!
Sally, you do so much good for your nephew it's hard to express what a blessing you are to your sister's family and to Alex.

He is such a gorgoeus boy and thank God he is a fighter and determined to beat this thing.

So much love and blessings to him on his special day and to your entire family.
מזל טוב ו לחיים!
A beautiful story about a brave and courageous young boy man. Much love from Colorado.
Blessings to him and all folks......
this is wonderful of you Sally.
Mazel tov and a 'yasher coach' to you, Alex. I will be in synagogue tomorrow, and when we do the Prayer for Healing, I will say your name.
Mazel Tov Alex! How about that Aunt of yours? Isn't she great?
You are one much loved young man.
All the best from Chicago!
I just LOVE the first photo of Alex. Somehow it seems to encapsulate all of the strength and gutsiness and beauty he possesses. Beautiful young man.
Health and happiness in a time of great joy and great tribulation.

Dominus vobiscum.
Mazel Tov Alex and happy birthday!
What a great tribute to an incredibly brave (and HANDSOME) young man! Fight the good fight, Alex. You now have a very powerful group standing behind you. Our collective wishes can work miracles. All you have to do is believe. Congrates on your Bar Mitzvah. L'Chaim!
Mazel Tov, Alex, you brave and wonderful young man! Your courage is inspiring. I hope that you enjoy your Bar Mitzvah and a good, healthy life.
I'm thinking about you again, today, Alex--I can't get enough of your gorgeous hair! (I'm weird like that :)
Mazel tov and L'Chaim!

All the best to Alex and family.
I know how much you can love a nephew. I lost mine to a different rare disease. I wrote about it, but I don’t think I can bear to edit it. Not yet.

To Life! To hope! To Alex!
Disclaimer: Grammy made the Talit bag with all the love and skill she could muster. She just couldn't muster the Hebrew, never having learned it. I got the letters, I needlepointed them in, let's eat!!! Sally'sSisterGrammy
And so you should know, it was a day to remember. His studying really paid off and I'm about to burst. I'll let Sally give you the details. Sally'sSisterGrammy
All the best to Alex and the entire family!
Mazel Tov, Alex!

We're thinking of you. Every Day.