**Side note: I’m trying out substack as a new platform. It's a little more writer friendly and allows me to share pictures and videos more easily. But for now, I will continue posting things here as well.  https://open.substack.com/pub/jncb/p/2-aprils-later

I’ve been in a little bit of a funk this week. A little extra tired, a little cranky, unmotivated to do anything I’m not required to do. I don’t have a great explanation for it. We’re all doing pretty well. Ronan is plugging along through Maintenance and we seem to have found his magic dosage for keeping him where he needs to be count wise. We start Cycle 5 next month, our second to last cycle. We had fun with friends this past weekend. We also attended a Ukandu event, the organization that has connected us to so many other cancer families and so much support. It was a happy, fun event. Despite all of that, I have felt a little bit weighed down. I started wondering if it’s the time of year. It’s been 2 years this week, since I first had an inkling something was wrong with Ronan. 

I’ve told our diagnosis story before. But, it was 2 years ago this week, since I came home from working and looked at Ronan and asked if he was okay. I still remember that alarm in my chest. But back then, in the Before, it was a different kind of alarm. I was sure that I was making too much of a virus, that my nurse mom brain was over reacting. After all, he was just a little pale and tired. He’d thrown up the night before once, and surely it’s just a viral bug. 

A weekend bug turned into something he couldn’t quite seem to fully kick. He was tired. He was sleeping past 6:30 am for the first time in his entire life- my perpetual early riser who wakes up with (or before) the sun. He started falling asleep on the couch after school. He said he was tired at t-ball practice, which he had been so excited to try. He still looked so pale. I shushed worries in my head for two weeks before deciding I would take him up to Doernbecher for his annual kidney labs that were already ordered, almost 2 months early. 

His results were somewhat ambiguous. His kidney function labs looked okay. His blood counts were slightly off…he was mildly anemic and his white blood cell count was a little bit low. However, I knew from past illnesses that his white count tended to drop when he had a virus. His kidney doctor didn’t seem too concerned when I messaged her about them. She didn’t think anything concerning was happening in his kidneys. But I still felt worried and didn’t understand why he’d be more anemic now than he’d been after his big surgery the year before, when he was literally peeing blood (as expected) for over a week. I made an appointment with his pediatrician for the following week. 

A few days before that appointment, his belly looked distended. We tried constipation remedies, thinking that made the most sense. His appetite hadn’t been great. If you’ve read my updates before, you know that at that appointment, she was very concerned about his belly, about his symptoms. We did more labs, imaging. He was slightly more anemic than he’d been the previous week. His spleen was enlarged. She consulted OHSU. They wanted more labs in a couple of days. Then, for reasons we still don’t understand, his mono test came back positive. She consulted OHSU again. This was an odd presentation of mono in a 6 year old, but not impossible. Be mindful of his enlarged spleen, come in immediately for any sudden pain, let him get the extra rest he needs, and wait it out. Mono can take weeks to resolve. This was a relief to have an answer, even as it was frustrating. 

A couple of weeks went by. We saw the pediatrician again. Nothing had changed too much. We were told to wait it out. Meanwhile, Ronan stopped t-ball and PE and did alternative recess. He got excused to go to school late when he needed to in the morning so he could sleep in. Meanwhile, our busy, active, never stop moving kindergartener took naps after school. For reasons I couldn’t fully explain at the time, my body hummed with anxiety. I was constantly stressed about his health. He looked thinner to me, even as his belly seemed to expand. Everything had an explanation…poor appetite equals a little weight loss on what was already a slim frame. Mono accounted for his fatigue and huge belly. Strep was making the rounds at school and it wasn’t too crazy to think he might get it twice, when he also was compromised from mono…and yet, my worries nagged at me constantly. 

When I look back at text messages from that time, I see a constant cycling of worry that I was trying desperately to justify with the given explanations. I finally called our pediatrician again and just asked for another set of labs. It didn’t feel like Ronan was getting better in any way. I was worried about little bruises he’d been getting. He wasn’t playing at recess or PE so why was he still bruising like he was? It felt like he was feeling worse too. This time, his blood work showed that all cell lines were low, pancytopenia, it’s called. The pediatrician officially referred us to hematology/oncology. 

Even knowing that, I refused to acknowledge the second half of that specialty. I was still stuck on mono and I read every weird study about mono that resulted in a weird anemia. I talked to a friend whose daughter had a similar experience and had even been told they had leukemia before finding out it was a mono diagnosis and a weird anemia. My brain refused to accept the thought this could be cancer even as my body was living in a 5 alarm state of being. I sort of wonder if it has been operating in that state for the past two years.

I had a dream that week, that Ronan was diagnosed with cancer. I woke up sobbing. I felt physically ill all day. I called OHSU every day that week to check on the status of the referral. Meanwhile, Ronan graduated kindergarten. He barely smiled in his program with his class. He looked so pale. He wore a button up shirt that was too big to hide the belly he felt self-conscious about. I went through all the motions of celebrating him and spent a lot of time looking up anything I could find about mono and what could be happening to him. 

4 days went by and each day I was told the same thing. The referral was “in process.” Friday was the first day of summer vacation, for Ronan and for Bryce. We had a trip to the Redwoods planned for the following week, a trip I’d planned months ago. Should I cancel it? We went to a movie, Inside Out 2. Ronan was holding my hand and was happy to be eating popcorn and candy, his two favorite foods. I could feel his pulse though, and it was racing. He was breathing hard too, like he was so full, like how I felt when I was pregnant. My insides screamed so loud that it was hard to sit through the movie. 

When we left the theater, I told Bryce that I was calling OHSU one more time and that if nothing had changed, I thought I should drive Ronan to the emergency room. He knew how worried I’d been. He’s always the let’s take it as it comes guy who keeps me calm but he could see it. He trusted me. He knew something was wrong too. I texted our pediatrician and she told me to trust my gut, to go. We packed an overnight bag just in case. I called out sick from work. Ronan was scared to go but he trusted me too. He knew how terrible he felt. He was already brave, already having been through so much medical crap in his life. We didn’t know as we waved goodbye to Bryce and Jack that we wouldn’t be home for 6 weeks. We didn’t know that we’d return home in the After. 

I think this time of year is loaded for me. Maybe my body recognizes it even before my mind. Maybe it’s why I have felt off this week. The finish line of treatment is approaching. I have felt hopeful about that in recent weeks, about planning for a future that leaves cancer in our past. But this week, fear has loomed bigger than it has in a while. And a pleading thought, always playing on a loop, please let him only have to do this once. April showers? Even though the sun is out. 

I remember the awful feelings from that time period before we knew was wrong. I felt full of worries and nagging doubts and fears that I swallowed over and over. Those weeks literally haunted me after diagnosis, and I carried so much guilt for not pushing harder, not trusting myself sooner that it was bigger than mono. I have tried really hard to let that guilt go. I have been told over and over that it wouldn’t have mattered from a treatment perspective. I question whether tumor lysis syndrome would have been as bad if we hadn’t waited so long, if his tumor burden was lower. I question whether his kidneys would have been less hurt. I won’t ever know. I think our pediatrician carried some guilt too, like she should have pushed harder? I can’t know for sure but I don’t blame her. She checked all the boxes and talked to who she was supposed to. One of the fellows that ended up on our treatment team was the doctor she consulted after the first set of tests and the mono test. It is what it is. They went off the information they had at the time. If we’d come in sooner, maybe we would have been sent home with the same answers? All that to say, a person could make themselves crazy trying to work through that. And maybe the timing would have changed but the diagnosis would not have.

Choosing to let it go though, it doesn’t take away the physical memories. I hope the end of April can someday represent something besides the beginning of cancer symptoms. Maybe a calendar will someday look more like a calendar and less like a road map. For now, we’ll try to make good memories for this April.