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A young couple describes their journey when they discover their unborn child has neuroblastoma.
When Rich and Stephanie Matthews were expecting their second child, a routine sonogram revealed that the developing baby might have a neuroblastoma—a sometimes deadly cancer that affects about 700 children a year.
How does a young couple handle such news? How did they brace themselves for the birth of a baby who might need surgery, chemotherapy or both? The couple described their journey for CURE, documenting the first year of life for their baby boy, Austin, in photos and words. Their story reminds us that cancer is not always the final victor.
[Stephanie] When that first sonogram showed we were having a boy, we knew what we would name our son: Austin, my grandmother’s maiden name.
[Rich] Time stops when you see and hear the heartbeat of your child for the first time. My mother was there for Austin’s first sonogram—Grandma’s first time seeing her grandson! It was an amazing moment. We left the doctor’s office as happy as could be.
[Stephanie] The call came to my desk phone in the newsroom, which was odd in itself because no one outside work calls on that line. The nurse said the doctor spotted something on my sonogram. “Nothing to worry about,” she said. It was probably just kidney cysts, which are common in boys. They wanted a specialist to check it out, just to be sure. I called Rich. He also told me not to worry. We had a healthy one-year-old girl, Avery, and would have a healthy baby boy.
[Stephanie] It was a few weeks later when we got in to see the neonatologist. Even though everyone told me not to worry, I did. After another sonogram, the doctor gave us what he called a differential diagnosis. That meant it could be several different things. First, it could be kidney cysts, but to him, the spots looked like they were above the kidneys. It could also be a sequestration, which is basically a piece of the lung that hadn’t formed properly. Then he gave us the final possible diagnosis: it could be neuroblastoma, a childhood cancer. But he was sure it wasn’t this, because neuroblastomas aren’t diagnosed this early in pregnancy. The next step, an MRI, would tell us more. So we left that appointment without the answers we‘d hoped to have.
We had the MRI with another doctor a few weeks later. The doctor called us back into her office to show us the scans. She focused on the area above one kidney, the adrenal gland. Then, in the kindest possible way, she dropped the bombshell: everything pointed to this being a neuroblastoma. “But neuroblastoma never shows up this early,” I insisted. She said it was rare to see it this early, but that’s what it looked like. I could feel the tears coming. Cancer? My child wasn’t even born yet, and already he had cancer? Rich grabbed my hand, and the doctor handed me a tissue. I was in a daze as she told us Austin might need surgery, chemotherapy or both. I left the appointment in a fog. I was supposed to return to work to produce the 10 o’clock news that night, but there was no way I could concentrate on work knowing the baby growing inside me likely had cancer.
[Rich] My wife and I are usually on the same page; we are extremely close. But this challenge knocked the wheels off. Stephanie wanted to throw herself into preparing Austin’s room, putting together the crib, decorating. But I couldn’t bring myself to do it, fearing he would never make it home from the hospital. I wondered what we would do then—leave everything untouched as some tribute to our lost son? I knew I wouldn’t be able to bear moving things out of that room; it would always be his even if years later we decided to have another child. For the first time in our relationship, we weren’t talking about it. Neither of us could sleep at all. We were sick for months.
[Stephanie] The next several months felt like I was running around in circles. I was getting sonograms every three weeks. The tumor was growing, but so was the baby, so it was hard to tell what that meant. I wanted to know what specialists I needed to see. I wanted to know who was going to deliver my baby and where. I wanted to make a plan, but no one could give me any answers. All the research I did online led me to heart-wrenching stories of children bravely battling cancer. I was at work one day, and an e-mail came in from a viewer. Her son had neuroblastoma, and her house was broken into while they were at the hospital. The e-mail included pictures of the toddler in a hospital bed attached to all sorts of machines. By then, I was seven months pregnant and very hormonal. I lost it. I started sobbing. I finally called my husband and asked him to come to work. We made a decision to take control of this situation. No more agonizing between appointments. No more surfing the Internet for answers. We were going to make our own plan.
She focused on the area above one kidney, the adrenal gland. Then, in the kindest possible way, she dropped the bombshell: everything pointed to this being a neuroblastoma.
He explained to us that neuroblastomas that are discovered during pregnancy are totally different than the ones that develop in toddlers and young children. He told us that new research showed neuroblastomas detected in utero often go away on their own.
[Rich] That night we found websites of a few local kids with neuroblastomas. Three of them wrote glowingly about the same pediatric oncologist. We called that doctor the next day, and they said they could see us that afternoon. On the elevator up to the office, a young patient was wheeled in beside us. She was riding in a red wagon just like the one we already had for our children. She was bald with a face full of pain but also hope. Would this happen to our son? Once we were taken back, the doctor came in and immediately put us at ease. He explained to us that neuroblastomas that are discovered during pregnancy are totally different than the ones that develop in toddlers and young children. He told us that new research showed neuroblastomas detected in utero often go away on their own.
[Stephanie] The doctor told us that the current thinking among the top researchers was to take a wait-and-see approach and not rush newborns into risky surgery. He answered all our questions. He offered to get me in touch with another mother going through the same thing. He told me not to worry, and I tried to take his advice.
This doctor helped us make a plan. He told me it would be no problem for my regular obstetrician to deliver Austin at the same hospital where I delivered Avery. He said we should bring Austin in 10 days after he was born. He would run some tests and then we could take it from there. For the first time I felt in control.
I made it almost to full term. I delivered a beautiful, 7-pound, 9-ounce boy on Sept. 23, 2009. We took Austin to see the oncologist 10 days later. They gave him a sonogram and an MRI. I cringed as the anesthesiologist put my tiny baby to sleep for the MRI.
[Rich] We worried about the results, planning for the worst but hoping for the best. It turned out the tumor was still there but not substantially bigger than the final prenatal sonogram. Austin’s liver and other organs looked good. The oncologist recommended we wait and monitor the situation with sonograms and blood tests every few months. If tests showed any signs of growth, or if we had any complications, we could reconsider surgery. We talked about it and decided to follow his advice.
[Stephanie] Austin has been so healthy in his first year of life that it’s hard to believe all the stress we went through those first few months. He hasn’t even run a fever. We’ve taken him to the oncologist every three months. The first two appointments, Rich and I went together, so we could support each other in case we got bad news. Even as healthy as he is, I still prepared myself for the worst, telling myself I need to be ready. But the past two times, we’ve gone solo, confident that we’ve beat this thing.
[Rich] It’s been a year now. Aussie’s tumor is still there, but it’s slowly shrinking. We just celebrated his first birthday with family and friends. He was like most every other 1 year old, smearing cake on his face and enjoying the packaging more than the presents.
[Stephanie] Aussie has a contagious laugh. He sounds like a little bird. Every time I hear it, I think about how lucky we are. We know other parents whose children are going through the surgery and chemotherapy we feared. We are truly blessed.
[Stephanie] At Austin’s one-year checkup, the oncologist said it would be our last visit. Aussie’s tumor is gone! It went away all on its own—no surgery, no medication. As always, I was prepared for bad news, but never expected this. I thought this would be something we’d have to monitor for the rest of Austin’s life. Just to make sure, I asked if this was something we’d need to put on his medical release forms when he tries out for basketball in the 7th grade. The doctor said, no, Aussie was totally in the clear. He also showed me the image from the prenatal MRI. You can clearly see the tumor, which looks giant on his tiny growing body. But now it’s gone!
I probably would have cried tears of joy there in the office if I hadn’t been chasing a one- and two-year-old around. All the way home, Austin just kept saying, “Wow, wow, wow,” and I kept thinking the same thing.