Henry’s Diagnosis: What’s Up with Our Superhero?
Written by Amber
This is a pretty comprehensive narrative detailing how we discovered Henry’s cancer and what it all means. If you’re not up for a longer read, dust off those high school skimming skills and look for bold words and their following summaries. You’re welcome to all of you shortcutters out there.
Also, I’m a mom now so I got comfortable talking about bodily functions real quick. But let’s be honest, that came with being pregnant and all the weird stuff that happens there. Anyway, I hope you’re okay with poop because that’s where it all started with Henry and we still celebrate when he does it because it means so much to us. Yeah, I know most parents aren’t thrilled about changing a poopy diaper but somehow I’m really happy to. And a lot of them. Let me give you a little context.
Henry was born the perfect baby with a full head of hair and passed all the newborn tests. We went home ready to be baptized by fire into parenthood and took on the growing pains of all that involves. Like any new parent, we didn’t know much about what was normal behavior and what wasn’t. So when Henry would go for a week or two without pooping, it wasn’t too much of a red flag but I’d ask the pediatrician about it periodically and they didn’t worry, so I didn’t. But then at three months old, Henry went for three weeks without pooping and starting crying and throwing up when he strained and tried to poop. I knew something was off and pushed to have it checked out.
On first examination, he was diagnosed with anal stenosis: a narrow anus which restricts the passageway, preventing or limiting poop from coming out. We were referred to surgeon who wanted to operated the next day to correct it. Though he had good intentions, we decided to hold off and get a second opinion. Enter Dr. Grandpa Lillehei! We saw Dr. Lillehei a few days after that and he confirmed the diagnosis of anal stenosis but added that sometimes there are a few other underlying problems that he’d like to make sure weren’t there. And then we started running tests. Henry ended up having both of the additional issues that he suspected. First, a dysplastic sacrum: a truncated spine. Second, a presacral mass: a tumor. Henry’s official diagnosis evolved into Currarino Triad: The combo of all three (anal stenosis, dysplastic sacrum and tumor). Working backwards, the tumor grew on his tailbone and as he grew in utero, it crowded the space for his spine to fully lengthen and pushed into his rectum causing his anus to form narrowly. I still can’t believe this all happened while I was pregnant with him and he was born with cancer. Cancer from day one. Before day one. My heart aches thinking about it.
How common is this Currarino Triad you ask? Not so much.
And then on top of that, how common is the triad’s tumor actually malignant? Rare. Very rare.
Oh, Henry. You are truly one in a million.
We went forward with surgery and had the tumor removed (at this point we didn’t know if it was benign or malignant) and his anus widened to help him poop. Dr. Lillehei was a calm and reassuring presence amongst our anxiety as we sent our baby to surgery. I trust that man completely. Waiting for the biopsy results was excruciating. I kept telling myself that the majority of these tumors are benign and that his would be too. Even Dr. Lillehei, who doesn’t sugar coat things, said it’s so rare that they’re malignant that he seemed to expect it to be benign. But then we heard the news and we were shattered.
Germ cell tumor. Teratoma. Yolk sac tumor. Cancer. Chemotherapy. All of these new words and diagnoses were thrown at me and I felt helpless. Henry, our otherwise thriving kid who was crushing the month-to-month milestones, now had cancer and seemed out of place in the normal world. But forward we go and fight on because the cure rate is 90% and above so we’re praying for those phenomenal numbers to be on our side.
