When Yossi got sick, I felt very alone. You have to understand that he was diagnosed in 1997. The Internet was fairly new. We had only gotten a computer the year before. I didn't know of any other frum families who had sick kids. I had asked his doctor to hook me up with another family who had other kids, but that didn't work out as I had hoped. She introduced me to a family whose child was off treatment for several years. I needed to know basic things, like how to deal with the sick child along with meeting the needs of the other children. I constantly felt torn and there was no one I coudl talk with. I looked online, and found a community called Ped-Onc. It is a list serve for parents of kids with cancer. (A list serve is an email community, where you send one email and it goes out to the whole group.) I met a lot of other moms whose kids all had cancer. Many of them with the same diagnoses. In fact, when Yossi went to transplant the first time, my cyber-friend Ricky had a son going to transplant right around the same time. It was through this list serve that I met a Jewish woman who lives in Baltimore. She was the one who introduced me to Chai Lifeline. From that point on, our life changed completely. I'll never forget our case worker, Ellen, telling me, "You are not alone now. You are part of the Chai Lifeline family." (I am tearing up just hearing her in my head tell me those words.) She also laughed when I told her we weren't supposed to be going through this, as I had taken out insurance against it. She told me many people feel that way, and if only it would really work like that!
So what exactly did Chai Lifeline do? To tell you the truth, there is too much for me to even remember it all. But there is a lot. Yossi was inpatient on a three day yom tiff. Ellen arranged for us to have a refrigerator to keep our kosher food in. She also sent us a huge package of food to get us through the three day holiday. When Yossi was stable, Chai Lifeline had him join the Ohr Meir Foundation on their trip down to Florida to go to Disney World. The first night Yossi called me up crying that he didn't like the food for dinner. (My kids are very picky eaters.) I called Ellen, who reassured me that the cook will make anything that Yossi wants to eat. He just has to tell them what it is he wants! Can you imagine? It's the same in Camp Simcha too, which I will get to later.
They let Yossi go a second time right before his second transplant as well, even though they are technically only supposed to go once.
Chai Lifeline sent my kids huge Chanukah packages full of presents. Not just for Yossi, but for the other kids as well. Even after Yossi passed away, the packages continued for a few years. I participated in a once a week phone chat with other moms. I am still in contact with two of those moms to this day. We had a retreat for families of kids with cancer that made us feel like we were in a 5 star hotel. There were programs that we went up to Baltimore to participate in for the other kids. Fun days at Port Discovery, and carnivals. We were always made to feel welcome, even though we lived so far. When the chemo failed to achieve remission, it was Ellen who called the Bostoner Rebbe for a bracha. And it was this Rebbe who told us to add a name. Ellen was one of the first calls I made when Yossi relapsed. Ellen continued to call me for years after Yossi's death on his yartzeit (anniversary day) to let me know she was thinking of me. I participated in bereavement retreats. The counselors from Camp Simcha drove down and spent a day with us, sharing pictures and stories.
Camp Simcha is and of itself a full topic. In 2000, before his relapse, Yossi got the ok to go. Camp Simcha is a magical place for the kids with cancer. They pack into each day a weeks worth of activities. They went to a Yankees game. They had special days in camp. There was a hachnasas sefer Torah that summer (welcoming a new Torah scroll, which is like a mini wedding). Great gadolim came to visit the kids, as well as sports athletes. The soda machines there are free. They want the kids to drink a lot, and so they just push on the button and a water or soda comes out. The grounds are huge, and gorgeous. Yossi cried when he came home, and he told me he wished he was back there. That was the only time I ever remember him crying for something. He never complained, and this was not complaining. It is just that Camp Simcha is truly the most magical place on Earth, and he wished to be back there. It truly lives up to the name.
So now you are wondering ... why am I writing all this ... Because, to run the programs costs a lot of money. There are various fund raisers. Three years ago my son-in-law Ushi rode in Bike 4 Chai. It is a grueling two day course covering 180 miles. The second day is the hardest, because the last 60 miles are all uphill. The camp is located in the Catskills Mountains. The bikers cross "The Worlds Greatest Finish Line" in Camp Simcha itself. (The session is not cancer kids, because they can't have that many people around them. It is Camp Simcha Special, for kids with life long illnesses.) Last year Shauly rode in it, and he is doing it again this year. He does it in memory of Yossi.
I am really hoping that people who read this will help Shauly meet his goal. He at least wants to raise as much as he did last year, if not more. He is still short of that goal. Please, any amount will help. I can't think of a better cause, and the stories I can tell you about giving tzedakah is amazing. Just pledge, and Hashem will give you the money to pay your pledge. I've had it happen every single time.
Shauly & Ushi
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💛💜💚💙💝
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