麻豆视频

In the journey of parenting, unexpected twists can sometimes take us by surprise. One such turn occurred for Mike and Jenny Anthony in 2021 when their daughter, Remi, fell ill at just 18 months old.

What seemed like a routine case of hand, foot, and mouth disease quickly escalated into something more concerning. As a nurse herself, Jenny’s instincts kicked in, leading the couple to seek further medical attention when Remi’s symptoms persisted longer than expected. Little did they know, this decision to seek more care would find them fighting for the life of their young daughter.

The Worst Fears, Confirmed

The Brighton couple had always wanted a family. Jenny was a NICU nurse for more than 15 years and joined Strong Memorial Hospital in 2015. Welcoming their daughter, Remi, in 2019 felt perfect, and those early beginnings were filled with milestones and joy. Remi was in daycare and picking up the usual illnesses that often spread through communal spaces. She was a happy child, full of curiosity and whimsy. She was known for emitting a light that brightened any space she occupied. But she was continually getting sick, and after one too many bouts with illness, the Anthonys were worried. Jenny was pregnant, expecting their son, Gus, and she was committed to keeping everyone healthy.

“We spoke to her pediatrician by phone, and that’s when she was diagnosed with hand, foot, and mouth disease,” said Jenny. “We expected that Remi would recover in a few days. But her fever was so high and persistent that we just didn’t feel right about not having her seen in person.”

Jenny’s medical background and Michael’s attentiveness had the couple on edge. At the hospital, staff were preparing to check for a urinary tract infection, but as a precaution, Jenny asked if they would perform labs along with the urinalysis, which wasn’t typical. Her request was granted.

“I think if you don’t know what I know, you wouldn’t think to ask for bloodwork first,” said Jenny. “But I just felt like something wasn’t right. Bloodwork is not the typical step for her presenting symptoms, but I wanted to go that route to rule anything out and check her labs prior to checking urine. The likelihood of it being childhood cancer was low, and my mind wasn’t even considering it a possibility.”

Jenny remembers watching their daughter waiver between listlessness and pep. “Everyone was hoping it was carryover from a previous case of COVID Remi had about a month before, perhaps a post-viral immune response” she said.

While there often is a low chance of bloodwork showing cancer for most people, Jenny had a close family history of leukemia. Her sister, Katlyn Pasley, was diagnosed with B-cell acute lymphoblastic leukemia (ALL) in 2000 as a child, and she succumbed to it that same year.

Unfortunately, the worst-case scenario came true: when the blood work results came back, they showed markers for leukemia, and the Anthonys turned to a pediatric hematologist/oncologist at GCH.

 “Everything was moving so fast at that point. Things got real very quickly for us. Because my sister also had had leukemia, I thought, ‘No way is this happening twice,’” said Jenny.

Over the next few days, the Anthonys would meet with members of Remi’s care team, including Jeffrey Andolina, MD; John Mariano, MD; and their dear friend David Korones, MD, as they navigated the medical challenges the family now faced.

“I remember telling (Mariano), ‘I’m floating right now, and I need you to tell me what to do or what you would do—because I have no idea how to make these decisions,’” said Jenny. “Korones and Mariano guided us to make the decision to go forward with a bone marrow biopsy that morning. It seemed so invasive for our child to go through that, but they explained that it was not as invasive a procedure as we thought, and it would definitively tell us what was going on with our daughter.”

Afterward, when it was confirmed as acute lymphoblastic leukemia (ALL), Remi was more vibrant than she had been in weeks because she had received blood and fluids. “She’s feeling really good so we’re like, how is this possible?” thought Michael. “How does she have cancer?”

Continued Care and Support

“They told us treatment would last two to three years, and I remember just being floored by this,” Michael said.

The Anthonys turned to family and friends for support, which came in abundance. About two months prior to Remi’s diagnosis, Jenny’s mom had passed away. The family was still healing, already receiving so much support from the community and loved ones. Jenny recalled feeling an immediate extension of support once again.

“We were like, ‘My God, we need you guys again,’” said Jenny. “We have an incredible community, and they showed up again for us. In the beginning of it, we were slow to let people know and slow to even realize what we were going to need, and they just rose up and answered what we needed without us knowing what we needed. We had financial help, and the meal train started right away and lasted the entire year!”

Mike was researching on his own, trying to understand everything there was to know about ALL, a type of cancer with a good prognosis. “This was all a new and wild frontier for me,” he said, recalling lots of sleepless nights. “We thought it would be a reasonable course of treatment, but Remi was considered high risk due to her family history, so that changed her treatment and upped the amount of chemo and intensive treatment she would receive. I had so many questions in that first month we were in the hospital. Everyone was so patient, kind, and helpful.”

The additional stress and anxiety of this issue has made Remi’s case extremely intense and emotional, both for family members and for the health-care team. “I always have an immense responsibility to make sure we are doing everything we can for our patients to receive the best treatments,” said Andolina. “In Remi’s case, I felt significant empathy for the family having to go through treatment for leukemia for a second time.”

The family stated that their support at GCH was incredible. Jenny, who had worked as a traveling nurse at one point in her medical career, said she had never seen a place like the tower at GCH. They had a private room with their daughter, where they stayed every day. While they only live about 10 minutes from the hospital, they did not want to leave and felt comfortable during their stay.

“I was pregnant, so I needed some physical support as well,” she said. “(Mike) kept encouraging me to bring in an air mattress, and I was like, “I don’t know if that’s too invasive,” but the nurses were supportive of it, so I could actually sleep.”

After Jenny gave birth to Gus, Remi had a few unexpected inpatient stays. The staff on 7North allowed the Anthonys to be together as a family during those challenging inpatient stays, for which they are grateful.

“Even in that challenging time of their lives, they always made small moments for one another,” recalled Samantha Chiarella, RN. “They always had a smile on their faces and were always so loving and supportive of each other and all the staff here.”

The Brightest Light in the Tower

“Remi has an engaging and happy personality—she is a favorite of the nurses, for sure,” said Andolina. “My best memories of Remi are her running through the halls of 7North, with her chemotherapy backpack attached!”

Michael recalled how that backpack went everywhere she went for months. “If she was in the car or on the couch, it was right there next to her. If she was sleeping, it was in her crib; eating, it was on her highchair.” He even sewed patches of her favorite characters on it.

Before her mother passed away, Jenny said her mom often referred to Remi as “sunshine.” “She’s just jolly and goes along with everything,” said Jenny. “You really do feel her presence like sunshine.”

Of course, there are tough times, too. Cancer treatment is not without some misery. It is difficult for anyone at any age, but we often wonder why it afflicts such little ones, especially as their lives are just beginning. Korones, a long-time provider and friend of the family, said it can be difficult to meet the emotional needs and psychological needs for everyone involved.

“I took care of Jenny’s sister when she had ALL more than 20 years ago, and I was there the day she died,” Korones said. “It was one of the most shattering losses I have ever experienced. I knew Jenny then, and later, I got to know her even better when she was a nurse on our palliative-care team. She has long been special, a dear and special friend and colleague. My heart breaks a little extra for what she and Mike are going through, and yet they are all so easy to love.”

Today, Remi is three years old and in maintenance mode. According to Andolina, her prognosis is excellent due to her treatment plan on a national protocol, with an added upfront antibody medication, which is expected to help her remain in continued remission.

“As with all of our patients, our teams and I hope and are doing everything we can to be sure that Remi is cured of her leukemia and that she lives a long and healthy life,” he said.

The family describes this as a bit of an arrival.

“Everyone told us the whole first year to just hold on tight for the maintenance phase,” said Jenny. “Sometimes we were just living day by day; other times, we could operate week by week. Often, we couldn’t schedule or plan anything. You learn a lot about becoming flexible. Now we can do more normal things, and Remi is just thriving. People tell you that she won’t remember the pain, but she will remember the love, the hugs, the snuggles. And we know that to be true. Her light just shines so brightly.”