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Super Avi: Episode 5

Ruchama Schnaidman

They wanted me to have enough soda to drink to my heart’s content, and actually had a soda machine installed in my house

Wednesday, November 30, 2016

W've been back to regular life for a few weeks now after Succos when I call Avi for another chat.

So which part of your story would you like to share with our readers this time?” I ask.

“Hmm… I’m not sure,” Avi says. “Do you have any ideas?” I share some ideas; I was hoping to tap into an area that Avi has a lot to say about. I needn’t have worried — after hearing me out, Avi asks for some time to think and then he says the words I (and surely you) love to hear:<

“I’m going to think about what I want to share and I’ll write something up,” he says.

I’m thrilled to hear that.

“Great,” I say. “I love when you do the writing, everything sounds so much more genuine coming from you.”

So here’s Avi, his story, and his perspectives in his own words.


My Story

When I had a bag on my neck, after my esophagus was disconnected [see Succos episode], all of the saliva I swallowed or anything I drank went into the bag. My situation was so rare, the doctors didn’t even have a bag that’s meant to be used for this purpose. The bag I had was very small and would fill up fast if I drank anything. The problem was that drinking felt really good, so one of the doctors in the hospital came up with a good idea. He attached a bigger bag to the bag on my neck so that I could drink a lot at one time and not have to empty the bag so often. I drank so much every day. When everyone was eating I’d drink a ton. I didn’t get full from it because the liquid came right back out but at least it felt good and kept me a part of things

My uncles came up with a great idea. They wanted me to have enough soda to drink to my heart’s content, and actually had a soda machine installed in my house. It was connected right next to the kitchen table. I was able to sit at the table and keep refilling my cup. So although I wasn’t able to eat with everyone else, I was at least able to enjoy the good feeling of drinking.

I hear Avi’s words and so many thoughts go through my mind: the way he so easily speaks about something that must have been so terribly difficult for him, how we don’t even think of thanking Hashem for the ability to drink, and of course how thoughtful Avi’s uncles were to think “out of the box” in their quest to help Avi.

Avi continues: Many of you readers may know that chemo makes a person very nauseous. Since I had no connection from my mouth to my stomach I wasn’t able to throw up from my mouth. Instead I had to vent my g-tube, which means I had to open the clamp and let the contents pour out of my stomach. My retching, though, caused the bag on my neck to blow up and it would leak all the time. It was gross and so frustrating. It happened at random times and had to be changed immediately because it leaked all over.  


Missing Out

Right at the beginning of our conversation, Avi mentions that he wants to talk about how hard it was for him when he missed out on so many parts of life due to his illness:

A few days after I was diagnosed, when I was very sick and on a respirator (a machine that breathes for you), my mother was hoping for the best. She nervously asked my doctor what the odds were that I’d be able to go to my cousin’s wedding (it was six weeks ago). The doctor was very optimistic and he said that, im yirtzeh Hashem, I’d be able to go to the chuppah. Well, the night of the wedding I ended up being back in PICU (Pediatric Intensive Care Unit) and I obviously missed the wedding. I was awake and aware of what was going on and I was really sad that night. The chassan and kallah came to visit me during sheva brachos, which was nice but I was still so disappointed I hadn’t been able to join my siblings and cousins at the wedding.

It was good practice, though, for the next disappointment: A few weeks later was my good friend’s bar mitzvah. I’m sure any kid reading this will understand how much I was looking forward to going to my friends’ and classmates’ bar mitzvahs. At that point, though, I was neutropenic — my white blood cells, which fight infection, were dangerously low — and I couldn’t be around other people. I was in the hospital and I was really disappointed. My doctor said to me, “You’re so disappointed about missing a friend’s bar mitzvah but I’m trying to keep you alive for your bar mitzvah.”  

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