Patches of Fog
LOVELAND, Ohio -- This should have been Ethan's year.
If Ethan Kadish had not been struck by lightning at camp three years ago, this would have been the summer he traveled to Israel with his friends and classmates.
Instead, Ethan spent this summer as he has every one since his injury: working toward recovery but still unable to walk, talk or take care of himself in the most basic ways.
RELATED: A day in the life of Ethan Kadish
So when his mom heard the Jewish Federation of Cincinnati was organizing a massive community mission trip, Alexia Kadish decided she wanted to go in Ethan's honor. And after Ethan's parents took a successful spring break trip with his younger sister earlier this year, Scott Kadish decided he wanted to go to Israel, too.
Thus began the logistical challenge of leaving Ethan in Loveland while his parents joined more than 500 other Cincinnati-area residents on a trip known as the 2016 Cincinnati Congregation of Community Israel Mission. The trip included members of nine Cincinnati congregations and set records as the region's largest mission trip ever and the largest mission from a city of Cincinnati's size for more than a decade. The Jewish Foundation of Cincinnati provided grants to help people pay for the trip.
For the Kadishes, that grant money was crucial. They used it to help pay for the extra, round-the-clock nursing care that Ethan needed during the 19 days they were gone. Ethan's parents scheduled nine different nurses on different shifts and rotations during the nearly three weeks they were gone. Alexia Kadish gives her husband credit for figuring out those logistics. But as complicated as the scheduling was, Scott Kadish said it wasn't the most difficult thing about making the trip work.
"I think Ethan did the most difficult work," Scott Kadish said. "He stayed healthy, he stayed out of the hospital, and he stayed out of the doctors' offices, which I think was another sign that he's getting a little bit stronger."
Scott and Alexia Kadish sat down with WCPO to discuss the logistics of taking an international trip as a couple and what they learned about potential new treatments for Ethan while they were in Israel. Excerpts from the interview are below.
What made you want to go on the trip?
Alexia Kadish: I kind of started the ball rolling. I had spent maybe eight hours in Israel when I was 10 years old while on a trip with my parents. I had never toured the country. This presented an opportunity that I really didn't want to miss.
Had Ethan not been injured, this is the summer that Ethan would have gone with his friends. I felt if he couldn't go, maybe I could go.
Scott Kadish: In the spring, we took a spring break just with Elyse. It was the first time we had been away from Ethan for an extended period of time and out of state.
It went remarkably well. It was flawless, and we gained a lot of confidence. So much so that when we came back, I said, I want to join you. I had not been to Israel on a touring trip for 32 years.
AK: It was really exciting and a little bit scary. A lot scary. We knew we had to jump in and figure out all the logistics. It's a much bigger trip than going down to Florida.
Scott really made it his mission to coordinate all of the nurses, and sometimes that made it three to four nurses a day for Ethan to make sure there was 24-hour coverage. We're so fortunate to have such a strong, dedicated team of nurses who truly love Ethan.
What was the biggest challenge of preparing for the trip?
SK: About nine months ago, we knew about this trip and the wonderful opportunity it offered the community. We were excited about the possibilities, but we were also really sad because at that time we didn't see a path towards participating. That was back in the fall, and Ethan was in the hospital every six weeks. It didn't feel like he was gaining strength.
We kind of turned a corner in February after his last surgery, and we were very fortunate that we haven't looked back.
We really had been at a nursing deficit when Ethan came out of the hospital in February. March and April were not real good nursing months from a coverage perspective.
We were really concerned about whether we could find and have confidence in a nursing team that could cover 19 days of 24/7 coverage. By about mid-May, we had the team in place and we were gaining greater confidence day by day.
You were gone during Ethan's birthday. Can you talk about that?
AK: He turned 16 while we were gone, and that was difficult to be away for his birthday, except Zakary (Ethan's older brother) was here. His brother made for him a party, invited friends over, and had a barbecue. He gave him whipped cream several times, and Ethan clearly was loving this.
It wasn't what we had planned for and looked forward to for his 16th birthday, yet it was beautiful in its own regard.
Yesterday, I showed Ethan the video, and he was just laughing. He could hear his brother laughing.
Maybe it was good that we stepped away. There was a nurse there the whole time. So if she had felt it was too much, she would have stopped it. We were so proud of Zakary.
SK: I think Zakary and Ethan developed a very special bond while we were away. The first week that we were gone, Zakary was our adult in charge. He was responsible for coordinating the nurses and make sure that everyone knew what to do, and he spent a lot of time with Ethan. I think it also gave Zakary a lot of confidence that Ethan is not a fragile piece of china and that he can treat him like his younger brother.
The next two weeks, my parents were here, too.
AK: We really entrusted Zakary with being responsible, and he rose above and beyond the challenge.
This is the longest time you have left Ethan since his injury. Can you talk with me about that?
AK: Four or five days into the trip, I kind of hit this wall of absolute exhaustion. For three years, we've had our guards up really high, and we haven't let that down. Here we were how many thousands of miles away. And for the first time I was letting that guard down, and it was just revealing layer upon layer of exhaustion. That was kind of the first indication that we were allowing ourselves to let go a little bit, and it felt great.
SK: I think being that far away was actually a benefit in that you didn't have a choice but to disconnect.
We had a texting plan, an international call plan, so we could be constantly reached if there was an emergency. I think we quickly realized that in the middle of the night, there wasn't much we were going to be able to do anyway so that we could turn the phone off and be completely disconnected.
AK: Everyone knew in an emergency, they also had the phone numbers for the hotels we were staying at. That's how we truly felt comfortable shutting the phone off. We didn't get one phone call or a text of distress.
SK: Ethan did the hard part. He stayed healthy.
What types of medical professionals did you meet with in Israel?
AK: Israel is known worldwide for so many things -- start-up companies, medical research. We started thinking, while we're there, would it be possible to be connected to some of these specialists and see what they're doing in terms of brain injury recovery?
We were connected with a medical consulting company that helped to match us up to doctors who they felt -- based on what we shared as our goals -- would be a good match. We talked with five different people while we were there.
SK: We saw a range of medical specialists focused on rehab and recovery -- speech therapists, functional neurologists. We also met with a doctor who has done a lot of research in hyperbaric oxygen treatment. Everybody had a connection to some sort of research we were interested in. It wasn't our expectation that we would travel with Ethan to Israel anytime soon. But we were more looking to learn what were the best practices.
We got a lot of confirmation that what we're doing today is the right thing. That the kinds of therapies that Ethan is receiving through his school, through our private therapists and through Children's Hospital are all the state-of-the-art, right therapies for his condition.
Is there anything you learned about that you are anxious to try?
AK: I think so. One of the doctors suggested that we start looking on the NIH (National Institutes of Health) website for clinical trials. He alluded to there being thousands of these clinical trials. Who's got this time to investigate these trials? Perhaps there are trials where they're doing different things with rehabilitation.
SK: The other one was hyperbaric oxygen therapies. It's both a very large financial commitment and a very large time commitment. The treatments in Israel are daily treatments -- five days a week for two hours a day for 12 weeks. We're just now starting to look at what resources might be in the Tristate area to possibly investigate those types of therapies.
The equipment for hyperbaric oxygen treatments can vary from center to center, and it needs to be the right equipment.
How could that help Ethan?
SK: I'm not a medical expert. The concentration of oxygen that gets taken directly into the body can freely flow to the brain; similar to how it freely flows where you have a wound. That helps with recovery. In Ethan's case, the brain damage doesn't recover. But the oxygen helps new pathways connect themselves.
AK: As long as there are viable cells and tissue, that extra oxygen can work to regenerate and infuse with vitality and life and then who knows?
SK: The researchers in Israel have had good results with stroke patients and folks that have lost speech capabilities have regained speech capabilities. Patients that haven't been able to move one side of their body start to be able to move that side of the body again. It's very intriguing to us.
Every brain injury is unique, and we don't know if it's going to be beneficial until we try it.
What was one of your favorite memories from the trip?
SK: One of the days, we had the option to climb Masada. There were two options -- to walk up the face or take a gondola swing up. Alexia and I chose to walk up the face, and we were wearing our Team Ethan shirts. That was a very powerful day, having the pride of Team Ethan. It wasn't an easy climb. And in some ways, we got to remind ourselves of the challenges that we've had with Ethan, but we were able to overcome those challenges. We reached the top.
AK: I was counting the stairs. I think there were close to 900. Making that climb, with the intention of Ethan in our hearts, it was spectacular.
At the end of that day, we were at the Dead Sea. The water has so much salt in it that you float. It was crazy fun, just feeling weightless and suspended in the water. I think the analogy of truly being able to let everything go in that moment and just feeling supported, by the community, by Scott, by God, by whomever, it was just an incredible experience.
What did this whole trip teach you about yourselves and Ethan?
AK: We learned that through all of this, there can still be life experiences discovered. And we can still find joy as a couple, and, you know, this opened wide a lot of doors and it was very exciting to see. Just the feeling of accomplishment.
Certainly I can tell you when we landed back in Cincinnati, there was a sigh of relief. We made it there, we made it back. I think it provided for me quite a lift in just confidence.
SK: Confidence is the word that comes to mind. It gives us the confidence to know that we can continue to have life experiences beyond a three-hour car ride away.
It's kind of bittersweet.
We want to still have family vacations. And one of the difficulties is knowing that we have to plan that for four (Ethan's parents, older brother and younger sister) and not five. But at the same time, realizing that every one of our kids has got their own needs, has got their own requirements. And I think we're finding what Ethan needs to be successful. And by this trip, we've gained a lot of confidence that we can go away and have different experiences and Ethan can have different experiences, and that's OK.
AK: Maybe it also taught us that he needs time away from us as well. There were areas in therapies that he just truly soared.
Just seeing how well he did just speaks for itself. He was still thriving and growing in our absence so it's very comfortable.
SK: We've realized how little and no control we have over what happens in the next 12 hours with Ethan. We seized the moment and enjoyed ourselves, and Ethan enjoyed himself, too.
AK: We were so very grateful to have the opportunity to go with the support of the federation. Without that financial piece, this would not have been possible. I think we've just come back with renewed everything.
How to Help
To help fund the hundreds of thousands of dollars of ongoing care for Ethan each year that isn't covered by insurance, go to http://jointeamethan.org.
To read more stories about Ethan Kadish and his recovery go to wcpo.com/ethan.