You know, when you become a mother, that life won’t be roses all the way. There’ll be tough times, of course there will. But of all the things you imagine happening, this isn’t one of them. My two-year-old has brain cancer. Not a sentence I ever thought I’d say.
It was in October 2017, not long before Tre’s second birthday, when I realized he was unusually clumsy. You expect toddlers to be unsteady on their feet, but this was something more. He’d hold onto the wall when he was walking. Or sometimes he’d just fall over for no reason.
I mentioned it to family and friends, but most said they hadn’t noticed anything. I thought it was odd, though, so I also spoke to his pediatrician when he went for his two-year check in early November. It didn’t spark off any alarms for him – there were no other symptoms to indicate anything was wrong. But he trusted my mom’s instinct – and thank heaven he did.
Tre was referred to a pediatric neurologist for a second opinion. He wasn’t overly concerned either, but to be sure he ordered an MRI scan. Two weeks later, on November 28, 2017, our whole lives changed.
My plan was simple. I’d take Tre for his MRI. Then we’d grab a snack and enjoy some retail therapy while we waited for the results. It hadn’t really occurred to me that it might be bad news. I’d convinced myself I was being paranoid. The scan would reassure me I’d been worried about nothing.
“We found a mass on the bottom of his brain. I am so sorry”
So I was alone, sitting in the waiting room when the nurse came to find me. Tre had only been in the scanner for around ten minutes. But I was happy to see her, thinking maybe they’d already seen there wasn’t a problem.
Nothing could have been further from the truth. I was utterly unprepared for what she said. “We found a mass on the bottom of his brain. I am so sorry. Are you alone? Can you call someone to come be with you?”
I closed my eyes, hoping it would block out the nightmare out. If I couldn’t see it, it would stop. It didn’t work. I tried to take in what I was being told. There would be another, more in-depth scan and then we’d see the neurologist to discuss the results. My heart broke. My gut feeling had been right – but I would have given absolutely anything to be wrong.
Meanwhile, there were five other kids at home who needed care. My mom went to them, while my husband and niece came to the hospital. When Tre woke up, we went to see the doctor. How does it feel, having to give parents such terrible news about their child? You know you’re shattering their world, you know what they’re going to have to go through. It must be so hard to do that, day in and day out.
We learned the mass at the back of his brain looked like medulloblastoma – a malignant brain tumor. Cancer. And there it was – the word we’d been dreading. How in the hell does a two-year-old child get cancer? Why?
Another scan showed Tre had spots on his spine. Just when I’d thought things couldn’t get worse, it seemed they could
They wanted to remove it as soon as they could, so we were told to pack a bag and drive to the Primary Children’s Hospital. The surgeon they wanted to operate was out of town, but he’d fly back. Another scan showed Tre also had spots on his spine. Just when I’d thought things couldn’t get much worse, it seemed they could. Part of me clung to the thought that I’d wake up any moment and find this was all just a terrible dream. But it wasn’t, of course. This was reality.
Tre’s surgery began on the morning of November 29, 2017, and took 12 hours. The brain tumor was removed entirely – the team didn’t think they’d need to operate again to remove any residue. That was the best news we’d been given since this horror story began.
Watching Tre recover was traumatic. He couldn’t walk anymore. He couldn’t control his arms and legs. I was worried because his left eye was distained. We were told all this was normal.
Tre needed emergency surgery due to internal bleeding, which meant we ended up staying in the hospital for almost three weeks. Initially, we’d expected to be there for just one. I was utterly drained – physically and emotionally. Tre needed me, I was focused on him – but I also had five other children to think about. They needed me too, as they struggled to come to terms with what was happening.
Tre’s diagnosis was confirmed while we were at the hospital – Stage 4 medulloblastoma. He had spots on his spine, but his spinal fluid was clear. Ok, we had to get through this. Never mind a day at a time – we were taking it minute by minute. It’s the only way we could cope with what was happening.
Tre was allowed home for a week, with his inpatient chemotherapy planned to start on December 20. Right before Christmas. We were told the cancer was too aggressive; it was too dangerous to wait any longer. So we held our Christmas early, celebrating as a family. And it was wonderful, truly – but we couldn’t ignore what was coming next.
Tre couldn’t understand what was happening – he just knew he didn’t like it and didn’t want to be there
Looking after a family of six is hard. And right now one of them needed me more, so I needed people to help with the others. I will never be able to express just how grateful I am for the most amazing family, who really stepped up for me. My mom and three sisters worked it all out between them. They took care of every detail, and knowing my kids were loved and cared for was a massive relief. The neighbors helped too. They sorted out transport and food. The lawns were mowed, and the house was kept clean. Between them all, these wonderful people made sure we didn’t have to worry about a thing outside the immediate issue. We can never thank them enough.
Tre had six rounds of inpatient chemo and three stem cell transplants. We’d stay in the hospital for three weeks, then home for a week. Rinse and repeat. The days were long and hard. Tre suffered side-effects from the drugs. We’d have to hold him down for blood draws and to change his dressings. He couldn’t understand what was happening – he just knew he didn’t like it and didn’t want to be there. He got mad, and so did I.
We’d been warned that one of the chemos could result in hearing loss, so that was checked regularly. After the third round of treatment, they confirmed he was losing his high-pitch hearing in his left ear. That broke me. This was tough enough on us all, especially Tre, without that. It wasn’t fair. He didn’t deserve it.
By the time we got to the final transplants, Tre was exhausted and sick. It broke my heart, seeing how he cooperated with the nurses and tried to help them out. This was his new normal; he was used to it. Did he even remember the amazing life he had at home with his siblings? Was he aware they were all there, waiting for him, thinking about him, going crazy with worry over whether he’d be ok?
Our final inpatient day was July 7, 2018. He’d done it. We’d survived. We rang the bell after his blood transfusion. Tre didn’t really understand and might never remember it. Although I’d be happy if that were the case, I do want him to know how brave he was. We’re so proud of the way he has handled all he’s been through. Even when he felt bad, he would smile and hug everyone. He’d struggle through his physical therapy even when it hurt. During music therapy, he’d sing his heart out. When he’d had enough, he would yell at us.
He got out of bed every day and did his best. He truly was an inspiration.
I’m mad cancer ripped such a hole in our family life. Then I feel guilty because the only thing that matters is Tre beat cancer
Two weeks later, Tre had his post-treatment MRI. This showed the cancer was completely gone, but he’ll still need regular scans for a while to make sure it’s not coming back. The healthier he is, the longer we can wait between scans. We also need to be aware that some side-effects of the chemo might not be evident for years. It means Tre will need to be monitored by his oncologist for quite a few years.
My emotions are still a whirl. I’m thankful, of course. I’m sad that Tre has had to go through this. That it’s affected – will continue to affect – such a large part of his childhood and his life. I’m mad, too, that cancer ripped such a hole in our family life. And then I feel guilty because the only thing that really matters is that Tre beat cancer. I know so many other moms who can’t say that, who are living with a dark, gaping void in their hearts and lives because of this horrible disease.
It’s true to say my faith helped me get through this. It was difficult because I was so mad and couldn’t understand why this happened. I stopped praying for a while because of my anger. But eventually, we all find our way. Cancer sucks, that’s the truth. But it makes you love harder, laugh louder, and appreciate everything more. It changes your perspective.
Tre has another chance. We are still a family. That means the world.