Our daughter taught us about life

St. Jude dad James shares lessons learned and how his daughter’s cancer diagnosis changed him as a father.

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  •  3 min

Emma was diagnosed with ATRT at 9 months old.

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I’m a schoolteacher. My wife is a schoolteacher. We know that teachers enter our lives in all kinds of ways, not just the classroom. And we knew, as we were expecting our first child, that our daughter was going to teach us a lot.

But we never dreamed some of those lessons would come through childhood cancer.

Our first and only child, Emma, became a St. Jude patient at 9 months old, after she was diagnosed with a cancerous brain tumor called ATRT, atypical teratoid rhabdoid tumor.

We had gone into her regular checkup thinking everything was alright. We’d never had a child before, so everything we were experiencing for the first time was normal to us. There was no big red flag. But when the doctor double-checked her growth percentiles, her head was larger than it should have been — from fluid buildup caused by the tumor, we would learn.

At the time that we caught it, in July 2021, it was way past catching it early.

Our baby needed brain surgery, but there was also the possibility she wouldn’t make it to surgery. Our local children's hospital helped us make prints of her hands alongside our hands, in case we were taking home only mementos.

But Emma did make it to surgery, and surgeons were able to remove most of the tumor. She was then referred to St. Jude Children's Research Hospital for cancer treatment.

Those first days, I was physically present, but mentally zombified. I was just trying to get my feet back underneath me. I felt like I had been knocked down, and it took days to get back up. But soon, we started to be flooded with the hope that comes from St. Jude.

Emma’s treatment included chemotherapy, proton therapy and physical, occupational and speech therapies. She started improving.  

There were moments where, as hard as it was to see our vulnerable little baby going through this, I was grateful that she was a baby. The older kids, the teens we meet at St. Jude, they're starting to have dreams and they're starting to go out and experience the world for themselves. They have aspirations, real things that they want to do that may be taken from them. With Emma, we could cuddle her, read her a book, play with her and make her happy.

And to be honest, I was grateful I didn’t have to answer the question, Why is this happening to me? I have no idea how I would answer that question. I can only say that one of the biggest lessons of this experience has been: You're in control of nothing. Only how you face what you have no control over is yours to decide.

Today, Emma’s doing great. She’s walking, talking, going down the playground slide, being a 3 year old. The more confidence she gains, the more she tries, and the more she tries, the more she succeeds. Every time she does something new, the hope just goes through the roof again. And that’s the most remarkable thing St. Jude has done for us.

But the second most remarkable thing is that, after Emma’s yearlong treatment, we were able to just step right back into our life, because St. Jude did not bill us for anything. I'm a young man. I have a young family. I haven't had to struggle very much in my life. And I can tell you for certain, this would have been a financial struggle.

Emma was diagnosed with ATRT at 9 months old.

If not for St. Jude, I would have spent the rest of my life working extra to pay off medical debt, instead of spending time with my daughter. St. Jude was a life preserver in more ways than one. We have our daughter, and we still have the home we want to raise her in. If it wasn't for people’s donations to St. Jude, we would have neither.

Another thing I’ve learned from this experience is: Don’t put it off. You think there's always another moment to do it later, or say it later, or live it later, but the truth is there may not be. Be present, right now. You can't take the future for granted.

But here’s the other thing, the tricky thing: Have faith in the future anyway. I can't sit here and tell you for certain that I will walk my daughter down the aisle one day and deliver her into the next chapter of her life. I'm going to live my life like I will, but I'm going to treat each day with her like there's a possibility I won't be able to.

That's what this whole situation has done for me as a father. I will not waste a day.


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