In the year prior to Beaudin’s diagnosis he complained consistently of headaches. So often, in fact, that I started a note in my phone entitled “Beau’s Headaches” because I had a gut feeling that we’d be explaining this all to a doctor if it didn’t resolve soon.
It was always after school. Always when I picked him up, he’d complain his head hurt. Maybe it was dehydration? So I’d bring him a water bottle to sip on during the car ride home. Then for a while I thought perhaps it was his eyesight. It was his first year of learning to read after all, and the headaches always came after school, so perhaps he needed glasses.
Things seemed to resolve over the summer between Kindgarden and 1st grade and then, like clockwork, started back up as school began in September. Well, he is reading more, so back to the glasses idea. My mom was not so sure. She felt like something more was wrong, that it wasn’t just from reading. The headaches wouldn’t resolve so in November I scheduled an eye doctor appointment.
Three weeks later, Beaudin was admitted to Children’s Hospital with neutropenia and an undiagnosable condition of chronically suppressed immune function. During that time, Jude and Selah attended his eye doctor appointment.
December 2018/ January 2019
Beaudin’s illness had actually started in early December. A high fever, out of seemingly no where, that would not break. For almost a week he was at above 104 deg and lethargic. Finally, we took him to his pediatrician. She said what he had was likely viral, and that we just needed to let him rest and keep him hydrated. So we did. Eventually, after 10 days at home, he seemed to be improving, so we sent him back to school. Almost immediately he became sick again and I thought, ‘perhaps he hadn’t recovered.” He had seemed on the mend, but after a couple of days at school I got a text from a mom that was on a field trip with him that read: “Beaudin looks yellow. I am worried.” along with this picture.
It was clear he wasn’t well, but why had he been getting better at home and now was getting worse again? 18 days in to this “viral illness” we took him back to the doctor and ran blood tests. That afternoon, at 5:15pm our pediatrician called us. “Run, do not walk, to the emergency room. I want you to immediately leave, pack an overnight bag and go. Do not go in to the waiting room, call ahead, let them know you are coming. Beaudin has no immune system, he cannot be exposed to anything.”
A trip to the ER, turned in to a transfer to Children’s Hospital which turned into a 10-day inpatient stay while the doctors did every test under the sun to identify what exactly was suppressing Beaudin’s immune system in such a critical way.
On December 27, 10 days after we checked-in, Beaudin’s blood levels and immune response were trending in the right direction so we went home. We had another week of Christmas break to continue recovering. Then, in early January we sent him back to school, glad this ordeal was behind us. Within the first week of him being back at school, his fever returned. Because of what had happened during December, we’d been connected with doctors at in hematology department at Children’s, to monitor his recovery. We called them about the return of the fever and they told us to come in. We checked in on January 16th and Beau’s blood was clear (of concerning markers), then on January 17th his bone marrow released leukemic cells into his peripheral blood and clear as day, he had leukemia.
Sometimes I feel like I don’t really recall anything about my life prior to the doctor saying, “It’s cancer.” Like those two little words wiped out my memory. It feels sweeping and generalizing, dramatic and melancholy, but really it just shows that there is a thick layer of trauma around everything that came after. Because really, I do recall things, but more often than not they feel like a memory fuzzy around the edges, like something I experienced twenty years ago.
“Tell us anything and everything about him, start from birth,” they asked. Every doctor. Repeatedly. For days before and after his diagnosis, the doctors would file in and sit on the hard couch in the corner and get out their notebook. “Start from the beginning, and tell us everything,…anything, that could possibly matter.” It was like they knew we would forget something pivotal, so they asked us on repeat to see if anything new came up.
So we’d recap. I would tell them he was healthy, flawlessly healthy. I would explain that I could count on two hands the number of times he has been sick in his whole 6 years. He recovers quickly, always has, which is why it took us so long to take the fevers in early December seriously. He has no allergies, productive daily bowel movements, sleeps wells, has lots of energy. His siblings get sick and he rarely gets it, or if he does, it’s for 1/4 the duration. I explained to them that we joke that he is the healthiest kid we know.
“Are you sure there is nothing else? Anything… anything that could be viewed as normal…. that could feel off?”
And for many days I said there was nothing else. And then one day, I added “Well, the only other thing is….well….. he always has headaches.”
“Tell us everything.”
The headaches Beau endured for years before diagnosis were not from the Leukemia, although Leukemic headaches would be something he suffered during the weeks around diagnosis. You see, the type of Leukemia that Beaudin has is referred to as Acute Lymphoblastic Leukemia (A.L.L). “Acute” meaning: intense or severe. In A.L.L, the Leukemia “turns-on” or begins replicating, and occupies all of your bone marrow within 6-8 weeks, resulting in death if not caught. It moves quickly, acutely, it is not slow growing as some “Chronic Leukemia” can be. As this take over is happening, some patients can experience headaches from their blood being displaced by Leukemic cells.
At first I hadn’t really thought to add in the headaches as a detail of his medical history. I thought they were from the Leukemia. But once I mentioned them, the doctors explained that the headaches Beaudin had 1 year before diagnosis, 8 months before diagnosis, 5 months before diagnosis, were not from Leukemia. His Leukemia wasn’t set in stone, activated, a sure thing….yet. Those headaches were a response to inflammation. They were his body trying to work through something, some unknown source of inflammation.
“Oh, so they don’t have anything to do with this,” I thought, “because the other doctor, in the buttercream room, just promised me that this wasn’t my fault, that this was genetic. I am sure of it. He said it in that interior room with the decals.” (you can read more about that mishap here.)
That day, I forgot about Beau’s headaches because this was pre-destined genetics.
How could I not have remembered the headaches? I felt frustrated, or maybe just exhausted. Whatever the feeling is when you’ve been swimming upstream for so long, that when an onlooker identifies you are only in knee-deep water, you are both relieved, and also enraged you hadn’t noticed.
“Oh right, his headaches. I guess I’d forgotten about them.” I said to Shelby.
I felt both glad for Shelby, for her memory, and also emptied by it. Headaches, chronic headaches, had been they only thing I had to tell the doctors when they asked me about Beau’s health history and I had forgotten all about them.
Josh walked up stairs and joined Shelby and I in the kitchen. “Babe, do you remember in Kindergarden and 1st grade when Beau always had headaches….?”
Josh went pale. He just stared at me.
I knew he remembered too.
I got from Jude’s birthday party and told Josh about the conversation I’d had with the mom from school.
“Basically babe, the roof is a mess..compared to a colander by the roofing company… and her son, another 5th grader in Kyra’s and Belle’s class, has chronic migraines. I just can’t.”
“Did you tell her about Beau’s headaches, remember…the ones while we were in the hospital?”
“Babe, why not?”
“….it didn’t seem relevant…. I guess, um…. I am not sure why I didn’t tell her.”
“Babe, you have to tell her.”
“I don’t know, I don’t want it to seem like I’m fear mongering, like ‘everyone with a headache has Leukemia!’ I mean, that just feels over done.”
“Well, right, he likely won’t get cancer. But if someone had told us a year ago to take Beau’s headaches more seriously, wouldn’t you have wanted to know?”
“Yeah, I mean, knowing what I know now, obviously. If someone had said, ‘Your headed for certain doom, and I have info that can get your off this path.’ Yeah, yeah… I would have wanted to know that. But that’s on this side of trauma. I just am not sure that I need to stand on a street corner and proclaim this for every passerby with a headache.”
“Right, but you’re not screaming from a street corner, you’re having a single conversation with a friend, not about doom and gloom, but about the true story that has happened to you.”
“Yeah… it just feels a bit gloomy…. I guess, I don’t want to put that on someone else.”
“Gloomy or not, it’s what happened to us.”
I asked the mom to swing by one afternoon before school pick-up. I figured Josh was right, I wanted to at least let her know the details of this piece of the story. But I knew I didn’t want to do it via text. That’d be odd and misplaced. So I asked her to swing by for a quick, face to face chat.
“A lot of things have been happening lately with how we understand Beau’s health and why he got sick. It’s pretty emotional and messy, and well frankly, clear as mud. Our doctor explained to us at last month’s appointment that genetics didn’t allow Beau to get leukemia. Something chronic was inflaming him, causing immune suppression. That is what allowed Leukemia to activate. And we aren’t sure what. And this info coming up as we work through all this mold testing stuff at the school is just, well, really complicated. But anyway, that’s not why I asked you to come by. I just wanted to explain to you… well, that Beau’s only symptoms before he was diagnosed were headaches. That’s it…That’s what I wanted to tell you. And I don’t mean it to sound the alarms that Sam’s on his way to Leukemia. Obviously… I just, well…I guess I just want you to know. I would have wanted to know to take Beau’s headaches more seriously. Maybe it wouldn’t have changed anything, but, I don’t know… I would have just wanted to know.”
She listened and thankfully took the information in for what it was, just some data. It didn’t seem that she started panicking about her son getting cancer. She just listened, intently. And for that I was glad. I went on to explain that I both wanted to just give her this data, but also clarified that I felt like Beaudin’s headaches were likely different than Sam’s migraines.
I always do that, I always diminish my own point to make sure no one is offended.
But who could be sure, inflammation was inflammation.
“Yeah, well thanks for telling me. Yeah, I’m not super worried about it, I Guess…so it’s all good. (She could tell I felt uncomfortable.) I’m glad you told me. But really, now I’m wondering….. Jake complains about headaches a lot when I pick him up from school. They aren’t migraines, so they don’t get the same attention as Sam’s do…..but…yeah…. he has them all the time.”
Jake. Beau’s classmate, his best friend. He has chronic headaches too.
What the fuck.
Kyra’s mom and I had become fast friends since I saw her a couple months prior at Target. Prior to that we hadn’t know each other well because although we both had multiple kids in school, none were in the same class. So we’d offer casual ‘hello’s’ in the hallways, but we weren’t hanging out.
This had changed things. We had been connecting a lot more often now. Reading through test results, sharing medical journal articles, trying to piece together the puzzle. Her daughter, Kyra, hadn’t returned to school since October except on day in November for the Thanksgiving program. She’d been hoping to attend mainly to see all her friends. She was there for under an hour before her migraine was so bad she begged her mom to leave. Since then, she hadn’t been back.
We hadn’t spoken in a while so I caught her up on what had happened. The conversation with Shelby in the kitchen, realizing I had completely forgotten about Beau’s headaches, then the conversation at Jude’s birthday. The other mom who’s son had migraines and the realization her younger son, in Beau’s class, had consistent headaches.
Kyra’s mom sat silent on the other end of the phone. I was telling her my overwhelm over it all, so I figured she was just being a good listener and giving me space to keep talking, but eventually she spoke up.
“Oh gosh. Judah (her youngest) always complains about headaches. And like them, he just doesn’t get the attention about it because they aren’t migraine’s like Kyra. But….. when you were telling me all that… oh my gosh, I can’t believe I haven’t been paying attention to his headaches.”
We both just sat in silence for a while.