I met Alena, a pediatric nurse, a couple of years ago when she celebrated nursing and pumping for a full year with her oldest son. She booked a nursing portrait session with her second son, Loudon but we rescheduled to accommodate an MRI. When we met for the session the results were in – surgery and chemotherapy on the horizon.
I said, “It sounds like you have some scary days ahead?”
I could see her throat tighten but her voice didn’t break. She said, “He’s so little. It’s too much. Just too much.”
In her own words, here’s a glimpse into Loudon’s story. He’s 3 months old.
“I noticed he was breathing fast. Not hard or working to breathe just…fast. My experience as a pediatric nurse told me that anything over 60 breaths per minute was fast (tachypnea) but also that babies do periodic breathing and other weird things. I held Loudon and timed his respirations for minutes on end- 60s, 70s, over 80 breaths per minute. I was puzzled. Eventually called the pediatrician who didn’t seem to believe me that he was really breathing that fast without looking ill. I remember saying “I know what a sick baby looks like and he doesn’t look like a sick baby.” I brought him in to the office where the pediatrician looked him over and timed his breathing- getting over 90 breaths per minute. He was puzzled and agreed he didn’t look sick but insisted we take him to the Emergency Room. Loudon was too young and his breathing just too fast and it could mean any number of scary or mundane things. The pediatrician even was obligated to offer us an ambulance which we refused and we hustled ourselves to the Emergency Room as the doctor called ahead for us.
Once we arrived at the ER poor Loudon was exhausted by all the exams and fell asleep on my chest with a nice normal respiratory rate. Multiple doctors and nurses and residents and medical students came to give him the once over, listen to his lungs, and hear our story. It was pretty plain to see that they wouldn’t have believed us if we hadn’t been sent there by our pediatrician. They watched his saturations on the monitor, they observed him feeding, and took his temperature. They asked incredulously “is there anything you’re worried about now?” Wes and I looked at each other and shrugged and said well he’s not doing it anymore so I guess not?? So they discharged us home and right on the top of our papers it said “Diagnosis: Worried Well.” Which is a nice way of saying overly anxious parents.”
“So after two trips to the ER, an admission, a bunch of tests and all we had to show was a healthy looking baby who still breathed fast and was positive for rhinovirus. My parents who were visiting nicknamed him Puff. I asked the pediatrician if we should see a pulmonary Doctor, I realized we may be close to the rabbit hole we don’t want to go down but this just doesn’t seem right. The pulmonary doctor seemed just as puzzled -I know I use that word a lot but it’s appropriate- as everyone else. No, it’s not normal. Yes, he looks great. No, I don’t know what’s wrong.
She ultimately decided a chest CT was warranted – We’d gone back and forth on it because of the need for an IV, contrast, and the radiation- it just seemed so invasive for a baby that looked so good. She also wanted us to see a dermatologist about the lesion of his chest- she was the first to concede that yes, maybe they were related.
So so we headed to the dermatologist. Upon seeing the thing on his chest he immediately diagnosed it as Juvenile Xanthogranuloma (JXG). He said it was like a hemangioma- it’d get bigger for a time and then go away on its own. It didn’t need to
be biopsied, it’s not dangerous, he saw plenty of them. I said “I’m going to google this when I leave- will I find anything that freaks me out??” He mentioned something about neurofibromatosis that wasn’t applicable. And then the million dollar question- could this be related to his lungs. The answer was no. Maybe he hedged a bit but mostly no.
I left the the office feeling a short lived lightness. Of course I googled- as any modern parent would. One of the first things I read said that in rare cases they could be found systemically- including the lungs. This was it. This was the answer. I KNEW it. I immediately sent messages back to the dermatologist and the pulmonary Doctor. I was told it was so unlikely but possible- hang tight- get the CT.”
“It’s funny how your parenting perspective changes. When he was born- just three months ago- I was adamantly against giving him any formula. No, no, none of that for his virgin gut! And here I am now giving him a bottle of pedialyte laced with radioactive contrast solution. None of that horrible formula but bring on the barium and diatrizoate! I was actually upset with the radiology person when he offered pedialyte to mix the contrast in. I was all “he only takes breastmilk, if I’d have known I would have brought some!” And he looked at me like- you realize what we’re mixing this with right?? And yeah, I get it, it seems crazy considering but I know I’m just trying to control what little I can in all this.”
“I will say here – the oncologist – the physician scientist MD/PhD- he’s not so easily likable. He’s a difficult read, a hard nut to crack. Oh, I’m glad he exists- with his big brain and his sizable lab and his interest in exactly the sort of thing that ails our infant son. However, he joked about us being liberals and spoke in odd analogies.
So maybe I wouldn’t get a beer with him, whatever. Some people you take to the bar and some people you take into battle. He’s the latter. And whereas he may have seemed slightly bored before he most definitely is not anymore.
Loudon’s diagnosis is systemic Juvenile Xanthogranuloma (JXG), a rare and aggressive type of Histiocytosis on his skin, in his lungs, around his spine, and in his brain.”
“We tell our story again and again at each visit as the testing continues and the treatment plan comes together. Reliving what we’d been through. I can tell things are bad, that this is a sad story, when even the rehearsed faces of the professionals start to crack, screwed up by a passing wave of sadness or pity. Most of my adult life has been spent on the other side and I know these faces from years of making them myself. The fact that I’m a nurse makes them uneasy. In healthcare you deal in human sadness, usher people through their nightmares. And you let yourself believe that somehow working in it is an insurance policy against it. A flight attendant getting to fly free. And yet here I am (again, the pesky “and yet”)- a nurse with my uncomplicated pregnancy and my normal ultrasounds and my perfect baby- proving them wrong, breaking the fourth wall.
This is our life now. This is the hand we were dealt so we’ll belly up to the table and play it as it lays. Loudon is too young and small to know the difference in his experience, too young to understand the implications and the pain. But we are older and bigger so we will take it on. We will carry him through. Persevere, love is sacrifice. You don’t turn into the badass motherf*cker you were meant to be by living through easy days. Diamonds come from pressure and all the rest of that bullshit.”
You can support Loudon and his family as they embark on their fight against Histiocytosis by donating here.