Diagnosis: Embryonal Rhabdomyosarcoma
It was March 2021. Barrett’s mom, Abby, was working full-time from home because of Covid. His dad Adam worked part-time in the mornings and was the toddler’s main caregiver. Then Barrett developed a lump in his right cheek. “We were brushing his teeth and we felt something in his mouth that shouldn’t be there,” explained Abby. “We were a little worried, but not too concerned until it started to grow. “We had taken a trip to Florida, our first since Covid and we ended up in the ER because the lump was getting much bigger, plus Barrett had a fever,” said Abby.
The doctor thought that he had a swollen gland, that was all,” Abby explained. When they got home, they followed up with their son’s regular doctor, who decided to send them to an ENT doctor just to be safe. That was on a Monday and by Thursday he had had an MRI resulting in a scary diagnosis, rhabdomyosarcoma. Barrett was just twenty-one months old. This is a rare cancer and is most likely to affect young children when it occurs, primarily showing up in their head and neck area. There are two kinds of RMS, Alveolar and Embryonal. Embryonal is generally quite treatable, but the survival odds with Alveolar are horrific. At that point, the family did not know which kind had affected their child.
“The diagnosis was really overwhelming,” said Abby. “We went through a lot of denial with thoughts like, this is just a little cancer, can’t it just be cut out? There was a whole week when we had a name for it, but we didn’t know the plan. He had to have a port, a bone marrow biopsy, and a PET scan. We had not been thinking that it was anything serious, we had not suspected it at all. It was the absolute worst day of my life when the PET scan showed that the cancer was all over his body, immediately making us think that he had Alveolar RMS, you know the worst kind, and that it was Stage 4. I called my mom scream sobbing from the driveway. That was the worst day of my life. We were going to have to fight for him to survive.”
They spent many nights in the hospital, learning how to be cancer parents. By the end of the 5th day of chemotherapy, the tumor had visibly shrunk. Still, they didn’t really know what that meant. “We didn’t dare to be optimistic especially since his diagnosis was Stage 4,” said Abby.
“They gave us a calendar,” explained Abby. “It was divided into little sections, one month at a time, whether we would be in the hospital or out.” Except, the calendar included treatment dates, but not the inevitable unexpected visits. His second birthday was spent hooked up to all kinds of IV poles and machines in a hospital bed.
After 6 weeks Barrett was re-diagnosed with embryonal rhabdomyosarcoma after scans showing that the tumors had shrunk, and Abby and Adam were able to feel a tiny sense of hope since their baby was now in the intermediate risk category, but still his cancer was stage 4 and there was a long road of aggressive treatments ahead.
Abby had to leave her job and never went back. Adam kept working to keep up afloat and for the family to have better insurance. They mentioned feeling lucky that they had a lot of savings and family for support during this time, but it was hard on everyone.
When asked about the hardest moments, Abby said that the radiation was brutal. Barrett had to have proton beam radiation which is super precise and is used for kids in the head and neck area. He would be sedated and radiated 28 times and he would also get chemo most days as well.
“He was in so much pain. His face was burnt, and his mouth was full of sores, he was put on oxycontin and methadone for pain. He got something called radiation recall, when he got chemo, it would flare up. He had this crazy mask to target the radiation and the only way he would fall asleep was in my arms. He had a whiteboard showing all his meds; 24 oral meds per day for a kid who couldn’t swallow. September to February was so bad, Christmas was a dark time, he was miserable and so were we.”
On the other hand, there were some positive moments, like Barrett’s first scan after treatment had started when they realized that it was working. “I didn’t believe them, no way could it work this fast!” Abby said.
Barrett also got a playset for his Make-a-Wish in our tiny city yard, that was very cool. Her family also started a blood drive in Barrett’s honor because he had needed 24 blood transfusions. “That was a cool way to give back,” Abby said.
The family received an Orange Envelope which they spent on groceries and other essentials. Pinky Swear also paid the mortgage a few times which enabled them to rent the house in the city where the hospital was. “That felt like a bit of stability and allowed us to do whatever was best for Barrett. At that time, I barely knew the date, much less when bills were due. The team at Pinky Swear made our financial situation that bit easier while we were in Rochester and meant that we didn’t have to spend one ounce of energy thinking about bills, we could take care of our baby instead. The house also enabled a little support system. Our in-laws came and took care of him so mom and I could hide out now and again and watch movies, I remember us hiding out watching Project Runway with a glass of wine,” laughed Abby, “It’s so strange what you remember.”
As Abby reflected with us, she was grateful that she felt like they got to do what was best for Barrett throughout the whole treatment. It also had her thinking about those who don’t have that opportunity. “I think that we can all be so weird about talking about money, all these organizations that give blankets and wishes, but money is actually what they need,” explained Abby. “Money equals freedom and stability. “
As for Barrett now, the physical health implications of the amount of chemo and radiation have taken a toll. Barrett’s teeth are all melted, his bones are fragile and he will likely have jaw issues as it grows. His speech was delayed due to all the damage to his mouth and 18 months of not developing. Overall, Barrett has come such a long way, he goes to school, is trusting of people, and can be very funny.
We talked with the family in July of 2023 and Abby is still looking for work. She constantly questions whether this is because of her absence to care for Barrett.
“The first week of his diagnosis, I thought it was maybe just a little treatment, then everything would be ok. But my boss told me that I needed to go. Technically I went on FMLA, but my position was not held for me. It was not just about the money and paying bills, you get passed by career wise, people don’t think about that. It is going to take forever to catch up and it’s so hard to get a new job. Every time I don’t get one, I think, is it because of this? It’s not just about your income at that moment in time, I never thought that my career would be ruined all because my child got cancer."
Barrett has quarterly checkups and Abby mentioned how she never realized how much non-profits and doctors would be part of their life. Thankfully Barrett’s latest scan in August 2023 was all clear. When asked what she is most proud of, Abby said “I was a good mom during cancer, I did all I could for my child.”