DIAGNOSIS: Rhabdomyosarcoma


For the first seven to eight months, Terrance and Terrayah were back and forth to the hospital almost every day. There were constant tests and procedures and sadly the tumor was growing fast. Sometimes they had to stay and other times they were back and forth in the same day. There was never any set schedule...

Terrayah was born in 2013 and celebrated her ninth birthday in March. She lives in Minnetonka, MN with her dad Terrance. Terrayah’s mom passed away in 2018 and she lost her grandma in in 2020. She was diagnosed with Rhabdomyosarcoma in January 2021. She has been through more in her short life than most of us go through in a lifetime, and so has Terrance; he lost Terrayah’s sister in 2011.

Terrance hails from Memphis. He has had varied careers including accountant, a personal care assistant in a children’s hospital, a high-performance mechanic, and his current role as a store manager for an auto shop. Thankfully, he had been with his current employer for six years prior to Terrayah’s diagnosis, allowing him to hang on to his job.

Terrayah had always been a healthy child, but, early in 2021, she developed a bump on her leg. Terrance thought was a spider bite. He took her to Urgent Care, where they were told to come back in two weeks if it didn’t go down. She could barely walk and was in a lot of pain; instinctively, because of his experience working with children in the hospital, Terrance started to worry that it might be a tumor, and so off they went to the primary care doctor. He called within the hour and told them, based on bloodwork results, that they should go straight to the hospital.

The oncologist came in and told them that Terrayah had Rhabdomyosarcoma.

“I could not believe it”, said Terrance. “Not another daughter was who is sick. All I could think is, why is this happening to her? I was blaming myself for the whole situation, wondering what I had done in the past to deserve this. I started doing a lot of research and asking my entire family if they were okay, but there was no genetic history. I wouldn’t wish this on my worst enemy. I have had three kids go through so much stuff. I was also very concerned about the amount of pain that my daughter was in, but finally they figured out how to manage it.”

The family was in the hospital for two months straight.

After the first week, Terrance tried to work when he could, but then it became too difficult, and he was off for four weeks trying to get everything situated. Thankfully, his employer was sympathetic at the outset, and Terrance tried his best to keep up with his work obligations through the phone. He was extremely thankful that he was a salaried employee and he had health insurance. Many families find, though, that employers don’t always understand how long treatment will continue and their patience with an employee erodes over time.

For the first seven to eight months, Terrance and Terrayah were back and forth to the hospital almost every day. There were constant tests and procedures and sadly the tumor was growing fast. Sometimes they had to stay and other times they were back and forth in the same day. There was never any set schedule, but a 20-minute drive each way clocked the miles up on Terrance’s car, and there were frequent visits to the gas station.

Terrayah soon had to undergo radiation treatment at the Mayo Clinic in Rochester, meaning that they had to find a place to stay there, and it was impossible for Terrance to work. There the costs mounted up.

”A few organizations were able to help ,” explained Terrance, “but it was a lot with meals, gas, hotels and not working. What do you do? My mom had vouchers for a hotel one hour away which we used sometimes just to save money. Usually, though, we stayed at a hotel downtown so I could get Terrayah outside and walking to her appointments just to get some fresh air. This all happened during Covid, so Ronald McDonald wasn’t a viable option. Once you were in, you couldn’t leave at all. My daughter needed more than that.”

Terrayah went into remission in February, but sadly, in March, the cancer came back aggressively; she relapsed.

Make-A-Wish insisted that the family took their Disney trip right away.

“They put my back against the wall, but I was worried. I had already taken off all this time and now I needed two more weeks. Make-A-Wish talked to my boss though and I had never seen him work on something so fast,” said Terrance, smiling.

As of August 2022, Terrayah is about to complete her last round of chemo. Her relapse meant three more rounds of out-patient radiation and two additional rounds of in-patient chemo. She has been in a lot of pain, especially in her muscles, but she is able to walk and to play.

“There have been a lot of complications due to Terrayah’s compromised immune system; she had the flu, then Covid, then a number of bacterial infections, as well as a bout of food poisoning,” said Terrance.

“We have to wait for a month or two to have her scan and know if the treatment has worked,” explained Terrance. “That’s going to be very nerve-wracking. My focus always is just about trying to keep the smiles on our faces.”

Even during the interview, Terrance was aware of how difficult some days can be.

“Even today, I have had a horrible morning. I woke up to a flat tire, it almost exploded on my way to work. I was supposed to leave work early for her doctor’s appointment, but I already got there late. Just last week, the transmission on my truck went; that was $4,000. It’s done almost 300,000 miles. I would do it myself, but I don’t have time. Even my mom says that I can’t catch a break. She helps me out looking after [Terrayah]. We just have to take things one day at a time, actually one minute or even one second.”

“We received the gift card from Pinky Swear while we were in the Mayo Clinic; it helped with gas and food. It was so expensive driving back and forth, even the cheapest accommodation breaks the bank. Just knowing someone is there to care about you means so much. There is only so much that people can do, anything is appreciated.

“We also received help from Pinky Swear with our rent on more than one occasion. My rent is $1,700 and is a sizeable proportion of my income. We have a two-bedroom apartment. The assistance provided so much relief. I had built a nest egg for us, but it just disappeared. I was saving for us to move into a house. The apartment was always supposed to be just temporary, but of course that hasn’t happened. Terrayah asks me every day, ‘Why can’t we just have a house?’ The medications are especially expensive, and I absolutely hate the beginning of the year when we haven’t met our deductible.”

“People tell me they don’t understand how I keep a smile on your face. When I walk in the door, I completely separate the two. I use work as my sanctuary, dealing with other people’s problems makes me feel better. What can I do? Terrayah, she’s a trooper, that’s one thing she has got from me.”

I just want to say ‘Thank You.’ People don’t say it enough. It’s harder on me because I hate to see her go through this, even in school when she lost her hair. I was fearful of how they would treat her. At first, it was not good. The kids were afraid because they didn’t understand. It did get better, but at one point she didn’t want to go to school. My work is my sanctuary because I have something else to think about. I would love school to be her safe place, but that hasn’t happened so far. For this school year, her social worker is coming to school to talk to the kids which may help. For now, though, her sanctuary is her home. I play the PlayStation and she plays her Switch. We have a good time with each other. Terrayah, she’s a trooper; that’s one thing she has got from me.”

Terrance and Terrayah are a formidable duo with so much still ahead of them. Join us in keeping them in our hearts as they get close to the tests which will tell us if this brave girl has finally beaten cancer.

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