September is Childhood Cancer Awareness Month and we are publishing a series of blog posts to share stories about GE’s work related to imaging and treatment. This post from GE Global Research technologist Mark Frontera and his wife, Tara, offers an update on a story they’ve previously shared on this blog about their son Adam’s battle with pediatric cancer.
When most people think about medical imaging, I’m guessing they imagine a person lying on a scanner, or a radiologist looking intently at images on a monitor. I have a different perspective. I imagine holding an iPad for hours to help keep my son still on a nuclear imaging scanner bed. Or, I imagine pacing back and forth in the waiting room of the oncology clinic anticipating results that could change our lives.
I’m a laboratory manager at GE Global Research, in the field of diagnostic imaging. Three years ago, when my then 4-year-old son, Adam, was diagnosed with stage 4 Neuroblastoma (click here to read his story) it brought a new perspective to my work. Every time my son was placed in a scanner (which was a lot!) I was forced to see our products through a different lens. I saw thousands of hours of work that helped save my son’s life. I also saw difficulties associated with medical imaging I had never considered before.
You might think that hearing the words, “Your child has no evidence of disease” would be one of the happiest moments in life for a parent of a kid with cancer. It’s not. True, it does fill you with so much gratitude; so many parents never get to hear that sentence. Unfortunately, the battle doesn’t end with those words. Most parents cannot feel a sense of relief when told their child is “free of disease” because there is always the possibility of recurrence. You worry intensely about your child’s every ache and pain. Forever. Has the cancer come back? Is this another side effect of cancer treatment? These are the worries of a cancer parent.
Kids like Adam often need regular follow-up care including scans, blood and urine tests, heart tests, lung tests, physical therapy, speech therapy, and emotional therapy. Scans and tests are especially emotionally draining for a parent. Lots of cancer parents refer to this feeling as scanxiety (anxiety suffered while waiting for the results of an important medical scan). Many parents even take medication to offset anxiety around scan time in order to function.
The kids often suffer from scanxiety as well, complaining of aches and pains that are created by their mind from worrying so much. Prior to his last two rounds of scans, Adam ended up in the oncologist’s office, first with horrible head pain and later with stomach pains. In both cases, we think the root cause of his discomfort was anxiety about the upcoming scans. It is so stressful because the results either allow you to go on with your life – until the next follow-up scan is scheduled – or begin a new, more difficult, battle. Good results mean you try to stop worrying and start enjoying and appreciating every day. It means being grateful for family togetherness and every happy moment that comes along. Bad results could mean immediate hospital admission; re-starting a fight for your child’s life. That fight is harder the second time; you know what you’re up against, you know that this time it’s a fight you may not win.
Our trips to Boston Children’s Hospital for check-up scans usually look something like this: Leave our house in Albany at 6:30 a.m., drive to Boston and check into The Ronald McDonald House. Get to the hospital for Adam’s 11 a.m. injection of MIBG agent, which means he needs a temporary IV. Next: draw labs and get a urine sample. Hopefully we have lunch before his 3-hour MRI begins, usually around 1 or 2 p.m. We are lucky if we make it to dinner by 6 p.m. Then we head back to the Ronald McDonald House to crash in bed by 8 or 9 p.m. The next day we have to be back at the hospital by 8 a.m. for his MIBG scan, which takes around 3 hours. Then we grab a quick lunch before his noon doctor appointment with the oncologist for the results. Sometimes we have to fit a heart echo or a pulmonary function test in there too.
When all that is over, we drive straight home and try to pick up normal life again. During these whirlwind trips to Boston, we spend most of our time trying not to look at the monitors or read the faces of the radiation technologist or the oncologist. It’s impossible to avoid. Did a strange head motion or comment mean bad news is coming? My wife and I share a common refrain “we are not pediatric oncologists,” but that doesn’t stop us from analyzing and worrying over every detail. This starts the day I put the appointments on my Outlook calendar and doesn’t subside until several days after the scans are complete and the results are in.
We try our hardest to create good memories along with scan time to lessen Adam’s, and our, anxiety. Adam has a way of always making the best out of every situation. We make the trips to Boston all about tradition and adventure. We do our best to make Adam feel special, ignoring our phones and focusing on him. We play games as we walk along the hospital halls. We go the restaurant of Adam’s choice for dinner. Those all sound like simple things, but to Adam they mean so much. They make the scans about him, and not about his health. He is just 7 years old. He shouldn’t be concerned with the results of a scan. He should be concerned with beating his Dad in the 300th game of Uno we’ve played that day.
Knowing what the results of medical imaging mean to families fighting this battle, like mine, makes me work incredibly hard every day. I want to help find more immediate and accurate answers to shorten the time associated with scanxiety. I want the diagnostics to cause fewer side effects. And, I try to think about how design can influence patient experience; before, during and after the exam.
Right now, Adam is free of cancer. But there is still a very real risk for recurrence. The challenge ahead for kids with recurrent Neuroblastoma is tough. There is no cure. There are no answers, but help is on the way. Research has been making amazing strides. To help accelerate this research, we started a research fund for Neuroblastoma. Please join our fight to bring answers, and to bring a cure!
Follow Adam’s story on our Facebook page, Aces for Adam.