Rachel McGonigle spent St. Patrick’s Day in a hospital room, watching her 12-year-old son, Sam, undergo his final round of chemotherapy for Hodgkin’s lymphoma.
It should’ve been a day for cautious celebration. But McGonigle’s daughter Aislin, then 5, was across the room, receiving her first round of chemo to fight the same disease.
“I never want to go back to that day,” McGonigle said, sitting in a lawn chair at Karakung Swim Club.
Shivering, Aislin walked over from the pool, her blue two-piece dripping wet. Her hair, once long and dark, was starting to grow back in pixie-cut style. Mom found it adorable, but before Aislin walked to the snack bar, she requested her multicolor baseball hat.
A few feet away, McGonigle’s three other children — Sam; Maire, 10; and Josh, 8 — played in the pool.
“Sometimes I just sit here and watch them swim and I’m in awe that, one, two of them are alive,” McGonigle said, “and also that it doesn’t faze them.”
The last eight months have been a test for the close-knit family, who were struggling financially before the children’s illness. They were only at the pool because of a donated membership, McGonigle said.
Right before Christmas 2016, Sam was diagnosed with Hodgkin’s lymphoma, a cancer that affects the lymphatic system, after experiencing severe abdominal pain. Rachel soon noticed Aislin had a particularly large lymph node near her armpit. It was removed in February and Aislin was also diagnosed with the disease.
Doctors found that Rachel McGonigle, who had enlarged lymph nodes as a child, passed along a genetic mutation to her children. Her son Josh has the mutation, too but hasn’t shown symptoms of disease.
The condition is so rare that McGonigle, a former oncology nurse, said her kids’ doctors found only three studies on it in the world. At Children’s Hospital of Philadelphia, a paper is being written just on her family, she said.
Despite her hardships, McGonigle is helping others with a project called Compassion United Havertown, a Facebook group that helps struggling families. As of this week, it had more than 1,100 members.
The 42-year-old was inspired after benefiting from her town’s compassion firsthand.
It started in April, in the midst of a long week at CHOP. On a Saturday, a desperate McGonigle logged on to her computer. She had forgotten about Easter the next day.
She posted on a Facebook page called Havertown Community Network, asking for help putting baskets together.
On Sunday, “I spent half the day crying,” she said, “because there was a knock at the door every 10 minutes with something.”
That night, an overwhelmed McGonigle couldn’t sleep.
“I could not let go of this idea,” she said. “There are so many other people out there who aren’t as public as we are, who need help.”
The idea was simple: Find a family each month that had fallen on hard times. Administrators would work with them to create a list of needs, be it meals or babysitters or help with chores. Members would sign up to help.
McGonigle contacted Havertown Community Network, which sent her the framework for a page. McGonigle added friends and family, who then added their friends, and the group quickly grew.
While McGonigle has a strong Catholic faith, she made it clear from the start that this was a nonreligious group. All were welcome.
McGonigle was excited about the project but knew she couldn’t take charge alone.
She held an initial planning meeting, which was attended by about 20 people, including Drexel Hill’s Barbara Conrad. McGonigle persuaded Conrad to take on an administrative role.
“How can I even describe Rachel?” Conrad said. “She inspires people and they’ve never even met her.”
Five women joined McGonigle’s leadership team; Havertown resident Andrea Swensen Ferry volunteered her house for donation drop-offs.
Quickly, the team set out to help the first family: Dakota Boyer and her 10-month old daughter, who had been diagnosed with cancer in both eyes. The two had just moved from Alaska so the infant could be treated at CHOP.
Best day ever! I got to meet my friend Dakota Boyer we had the same appt time at CHOP! Lord heal sweet baby Braelyn!!
In hours, that family’s wish list was was nearly complete.
McGonigle admits it is not always that easy.
Members were ecstatic when the project began, but responses started coming in more slowly this summer. The team wants to turn the page into a nonprofit, but they need more administrators and more families willing to go public when they need help.
And McGonigle’s own hardships continue.
Earlier this summer, on Aislin’s Make-A-Wish trip in Orlando, Sam’s appendix ruptured and he spent 10 days in the hospital.
Rachel and her husband, Ted, have struggled with periods of depression. Ted, a psychiatrist, remains under treatment and has not yet been cleared by his doctors to return to work.
And on Friday, the parents were still waiting to hear whether Sam and Aislin need bone marrow transplants.
Next to McGonigle’s chair at the pool, a folder overflowed with paperwork about student-loan deferment and enrollment in services that could ease the family’s financial burden. For months, McGonigle said, she has been living off donations.
“My faith has sustained me,” she said, “because every time our account gets to $0, something comes in.”
She said she is happy, peaceful even.
“She is more uplifting to me than I can be to her,” said the Rev. Kevin Gallagher, her pastor at St. Denis Church. “Her heart is bigger than her body.”
McGonigle laughs easily, joking that in her usual attire — tie-dye pants and a knit hat — she looks like a 22-year-old trapped in a 42-year-old’s body.
“I don’t worry about what people think anymore,” she said. “I know who I am. I know I’m a good mom. My confidence has become more solid than anything.”
As has her perspective. She appreciates watching Sam play baseball again, seeing Maire’s creativity blossom, and witnessing Josh’s empathy for others.
And just being around Aislin — “it’s like she never even had cancer,” McGonigle said.
Post giggle juice
Posted by Rachel Dougherty McGonigle on Thursday, March 16, 2017
Aislin and Sam are currently in remission, excited to return soon to Cardinal John Foley Catholic School in Havertown.
McGonigle plans to go back to work. It has been difficult, however, to find an employer who understands that if one of her kids gets sick, she’d have to drop everything.
Through it all, the community still buoys McGonigle.
In June, funds from a Kick Out Cancer soccer tournament at Philadelphia Soccer Club benefited the family. McGonigle said the HEADStrong Foundation, a local nonprofit, insisted on donating to them proceeds from its upcoming Run the Park Challenge.
Compassion United Havertown’s impact is expanding, too. Folks from nearby towns have reached out looking to start similar projects.
“I think this is the future of providing social services,” said Haverford Township Commissioner Mario Oliva. He and Delaware County officials met with the group to educate them about resources available for struggling families.
“People don’t think this happens in the suburbs, but it does,” Oliva said. “People won’t call me or call the county, but they will reach out to their neighbor.”
McGonigle and her two brothers, Tim and John, grew up in Ardmore. She graduated from Ss. Colman-John Neumann School in Bryn Mawr, Archbishop John Carroll High School in Radnor, and Villanova University. She thought she knew a lot of people here.
But she never realized just how many were willing to help total strangers.
“This whole project is restoring my faith,” McGonigle said. “Spiritually for me, life got easier after cancer.”
“She had to share her darkness with others so others could bring in the light,” said Conrad. “That’s how she likes to put it.”