Jspace Special contribution by Periel Aschenbrand
I have only ever used facebook as a tool. Mostly as a tool to waste time, spew nonsense and, occasionally, engage in mildly idiotic arguments with people I am “friends” with, but haven’t seen in years. It was through one of these people, a woman I went to high school with, that I stumbled across a post that she was praying for a sick little girl she had never met. This, at first, struck me as ridiculous. First of all, it seemed useless. Saying prayers in general, let alone for someone you had never met, let alone through Facebook. But there was a photo attached of the little girl. She was swollen, with tubes, in a hospital bed and obviously very, very sick. And really, for no other reason than I was nosy (and being judgmental), I investigated further.
My investigation led me to a facebook page dedicated solely to Ayelet Galena—a two-year-old who was suffering from a rare bone marrow disease. And it was not only Jennifer who was praying for this little girl, but thousands of other Jews, as well. And via Facebook, I found my way to a blog, apparently set up by her parents, Seth and Hindy, well before she had gotten so ill. In fact, the blog chronicled Ayelet and her parents journey, day by day, for the entire 100 days post bone marrow transplant. You see, among many other things, I learned that bone marrow transplant patients have to stay in the hospital for at least 100 days post transplant to make sure the 1,000,000 things that might go wrong, don’t go wrong.
Seth and Hindy Galena are New Yorkers but the hospital is in Cincinnatti and, as such, everyone was in Cincinnatti. Seth, Hindy, Ayelet (obviously), Seth’s brother, Hindy’s parents, Seth’s mother, aunts, uncles, etc. Some of them happened to live there, by luck, chance, by perhaps (dare I say) the grace of G-d, and so it was less of a nightmare than it could have been, and they were, at the very least, surrounded by people who loved them.
It hardly needs to be said that there are about four million blogs on the internet and at least as many critically ill children and heart wrenching stories. But Ayelet’s story, somehow, was different.
Starting on June 29th, 2011, Seth (and Hindy and occasionally, it seemed, other family members) would update the blog, at least twice a day, with photos, stories, brazen honesty, and a good deal of humor.
Through the blog (visit it here) we bore witness to checking in to the hospital, ICU, plane rides, videos, Seth forgetting his yarmulke (“a Phillies hat will suffice, no!?”), Ayelet losing her hair from chemotherapy, her very chic outfits, her cheeks getting chubbier and chubbier from all the medications, her love of straws and stickers, to posts like these:
Ayelet seemed abit more cuddly then her usual, ‘I am the most cuddliest puffiest kungfu panda bear alive mode’ - so we checked her numbers again this afternoon.
Seems her hemoglobin count went down considerably in the past day and she needs a blood transfusion. This wouldnt be a big deal, since most transplant kids require multiple transfusions, and Ayelet’s gotten a few already, but another one of the tests point to the fact that the semi-serious side effect TMA might be showing it’s ugly head again.
To combat that the docs suggested we move to another, stronger med that we can give Ayelet by infusion but it requires us to stick around through the weekend in the hospital.
Hindy is alone, so Bubbe will come and stay with her and Ayelet. 3 generations of Panar gal pals will be sleeping in room 22 this weekend making for some good bonding. That is a clear sign that someone (Tamar) will need to stock up on steak, chick-lits, and gossip mags.
If you have any mildy entertaining topics of conversation that Hindy/Bubbe should discuss so they don’t run out of conversation over shabbos please post below:
Extreme Makeover Home Edition?
Steaks: to be or not to be put on the Shabbos warmer?
Herman Cain/Kim Kardashian campaign ticket?
And posts like these:
Little Cow on the Prairie. Midwest meets Orthodox? Amish Paradise?
Ayelet woke up this morning and she either ate the entire vending machine of twinkies or she is having a fluid retention problem due to her kidneys not functioning properly. You feel bad about your weight? Ayelet somehow gained over 10lbs in the past few days. Now at 28lbs, mostly of liquid.
The plan today, since her lungs and breathing are OK (hello miracle) and somewhat stable at level 33 (hello Larry Bird), they are going to hold on weaning the breathing and focus on her peeing.
Thankfully the docs are so much more confident with her lungs, “we have some breathing room” they said, that from Saturday to today, her turn and progress has been nothing short of miraculous. So on to her bladder.
They upped the diuretic drip and hope that she can begin to pee more than she has. They’ll suction her Gtube to get whatever is sitting in her stomach out.
Fans: Asher Yatzar it up today. (google it)
We are trying to avoid kidney dialysis, as Ayelet doesnt need another major machine in her room. It’s cluttered enough with the oscillator, the line of drug drip poles and her mommy and daddy’s range of messiness. Ok, maybe just her daddy.
The mundane, the quotidian, the ins and outs of living in a hospital for months on end. The ups and downs, the worry, the fear, the love, they shared it all with us. Her ever changing head bands, her grandmother’s post “Working the Flapper look. Dahhhling, someone get that girl an irish whiskey and a cigarette holder.”
And Bubbe’s reply to my posting, “Is it me or is she looking more svelte?”
“Yes! More svelte....(and flattering position and lighting....) Thanks for noticing!”
They “liked” every comment someone took the time to post and when things got bad, they leaned on each other, asked us to pray and never, ever, ever forgot to fill us in or lost their positive attitude. There were people from New York, of course, but also from Israel and England and South Africa who had fallen in love with, were praying and baking challahs for Ayelet. And we formed, what came to be known as Ayelet Nation.
Had she peed? Had she peed enough? Too much? How were Co2 levels? How was her tummy? Seth would post explanations of medical terms and play by plays. And we were, all of us, hanging on to his every word.
If there were problems peeing, we were asked us to say Asher Yatzar, the Jewish prayer said after using the bathroom. And thousands happily obliged, reports from all over the world would pour in within seconds. People were saying it, their kids were saying it, their kids’ classes were saying it. It was mind blowing.
For my part, I read the entire blog from start to finish in one night. And by the end, I was weeping and head over heels in love. Like thousands of others, Ayelet was the first thing I checked on in the morning and the last thing I checked at night, before I went to sleep.
I even said Asher Yatzar for the first time in my entire life.
My Israeli husband, who thinks I’m obsessive in general, noticed I was checking the blog ten times a day. So much so, that he knew to ask me, at least several times a day, “Nu, so how is she?”
My husband was not the only one who noticed. And I was not the only one obsessed. On day 150, Seth posted:
“I checked the Eye on Ayelet site this AM and realized in the past month we had over 60,000 visits. Uh…. Hello Ayelet Addicts Anonymous! When I actually looked closer, I realized it’s only 14,000 people hitting refresh 5 times a day. Dedication or just Jewish anxiousness at its best, not wanting to miss a thing.”
He was right. We didn’t want to miss a thing. She had suddenly taken a turn for the worse, but had miraculously, bravely and courageously pulled through so many times, we were sure she would do it again. And throughout the next few days, there were small, but significant improvements. Ayelet Nation was collectively taking a small sigh of relief.
Four days later, this morning, eyes half open, I checked the blog, only to learn that Ayelet, at five o’clock in the morning, had passed away.
This was the blog posting:
No words: Ayelet Yakira Galena Z”L
With unstoppable tears and broken hearts we regret to announce that last night around 5AM, after hours of fighting and holding on, our precious Ayelet - the heart of our world, the light and strength for so many, could not fight any more. She is gone.
She put up a serious fight, but her lungs collapsed, her blood pressure dropped and the blood could not get to her huge heart.
Baruch Dayan Emes. Her life, her strength, a blessing to so many.
Like the 14,000 people who had fallen in love with our brave little girl warrior, I was heartbroken.
For as devastating as her passing is, it is an absolutely incredible and inspiring thing to know, that one little girl can change the lives of so many. That in this world, filled with vapid, inane, reality television shows and stupidity, we still have the capability to come together and care about something infinitely more meaningful—each other.
So for that, thank you Hindy and Seth. And thank you, Ayelet. Baruch Dayan Ha Emet.