“Mom, I had fun! Rolling the matzah dough was my favorite!” Four year old Jayden Roll beamed up at her mother in the lobby of the YM-YWHA (Young Men’s – Young Women’s Hebrew Association) in Montreal. In many ways she is just like the 5,000 other toddlers and children who ground wheat, rolled dough, and baked matzah at the Living Legacy Model Matzah Bakery. But she is also very different.
Sometimes she is just too tired and weak to do any activities at all. She also has a short time left until the doctors think that she will need to remain in the hospital for an extended length of time.
Jayden has pre-leukemia, known as MDS (myelodysplastic syndrome) which is very rare in children. Jayden’s doctors predict that it will most likely progress into acute myelogenos leukemia, or AML, at which point she will need to undergo chemotherapy and ultimately depend on a marrow transplant to survive.
Just a month ago, Jayden, a bouncy little girl with blond hair and an easy smile, was enrolled in JPPS (Jewish People’s Public School), which she attended together with her younger brother, Joshua. A bright student, she was eagerly looking forward to learning about Passover. When she began complaining about aches in her legs and displaying extreme weakness and lethargy, her mother, Kelly Goodman, took her to the doctor. After things got worse and Jayden began falling asleep all the time, a blood test confirmed that she was indeed suffering from a form of pre-leukemia so rare that the Montreal Children’s Hospital had never treated it before.
The Roll family’s life turned upside down. Jayden has been going twice-weekly for blood tests and has already had two blood transfusions, which explain why she looks and acts exactly like a healthy little girl—at least some of the time. In order to avoid infection, she stopped going to school and her parents rarely take her out, even grocery shopping. Kelly has quit her job to be able to care for her daughter.
“Since she is not in school, and Passover is probably going to be the last holiday that she will celebrate before she goes to the hospital, I have been trying to teach her as much as I can at home,” says her mom. “But the other day we dropped off [her brother,] Josh at school and she saw the other kids going to the Model Matzah Bakery at the Y. She so wanted to join them, and we were torn. At first I considered joining the school group, but my husband, Warren, reminded me how careful we needed to be.”
Kelly contacted Aviva Miller at the Y, and things started moving. Rabbi Dovid Weinbaum, program director of Living Legacy, who operates the model matzah bakery, offered to hold a private show just for Jayden, Josh and a few family members.
According to Marlene Jennings, executive director of the YM-YWHA, “When Rabbi Dovid came to me with his request, I thought ‘this is exactly what the Y is all about. We have to make sure that no one at all is left out.’”
From exactly 2:30 to 3:30 pm, between one school group and another, Rabbi Weinbaum carved out an hour of time for Jayden and her guests. The staff made sure to sweep the floors, wipe down the counters, and put fresh paper on the table where Jayden would roll her matzah to minimize chances of infection.
In a rare island of normalcy in a life that has become decidedly abnormal, Jayden giggled as she pretended to drive to a farm, kneeled down as she separated wheat from the stalk and, together with her brother and cousin, turned the crank on the miniature well as she drew water to mix together with the flour. She then rolled the dough into matzah, the thin crackerlike wafers eaten on Passover to commemorate the Biblical Exodus, when the Israelites left Egypt in such a hurry that they did not have time to allow their bread to rise.
Rabbi Weinbaum says that getting a hug from Jayden and hearing how much she loved the experience is what his work at the Living Legacy is all about. “We are here to make sure that every child can experience the beauty of Judaism, no matter the situation.”
Kelly is realistic about what the future holds. “We just found out this week that neither of her brothers are a match for her, so we are starting to look for a donor.” While a full marrow donation drive is not yet in place, the parents encourage everyone to contact local blood and marrow drives and sign up as potential donors.