Norovirus

Looking back, one of the most difficult stretches we have faced on this journey actually had nothing to do with Zander’s cancer diagnosis or treatment.

Just a few short days after completing Induction, Zander suddenly started having really bad diarrhea. It very quickly got to a point where anytime we fed him, it went straight through him, and it became obvious that he wasn’t absorbing any of it. He was ravenous, taking in 6-8 ounces per feed (twice what he would typically eat) because nothing was staying in his tummy long enough to satiate him. That first night, I was changing his diaper every 30 minutes to an hour. Neither of us got any sleep.

We raised the concern with his team the following morning and they decided to take a stool sample. While waiting for the result, I started feeling bad myself. I was achy and chilled, running a low-grade fever and just completely exhausted. I slept almost the entire day on the couch in the hospital room while James tended to Zander.

That afternoon, Zander’s stool sample came back — positive for Norovirus. I was assumed to be positive too based on my symptoms. Given how incredibly contagious it is, we aren’t sure how James managed to dodge it, but we’re really grateful he did. From that point on, we were placed on enteric contact isolation protocol. This meant that he wasn’t allowed to leave his room and any staff or visitors who entered it had to wear masks, gloves, and gowns.

Nothing could keep SuperZan's family away for long — not even Norovirus. He still received regular visitors who were happy to sport masks and gowns in order to spend time with him.

Lucky for me, the virus ran its course and I was feeling better within about 48 hours. For immunocompromised patients like Zander, viral infections like this aren’t usually life-threatening, but they do bring a high risk of malnutrition and dehydration. He already had a reduced appetite from the chemo, and before long, his weight had dropped below 11 lbs (he was over 13 lbs when he was first admitted to the hospital). To give his gut a break and hopefully put a stop to the diarrhea, Zander’s medical team placed him on TPN (total parenteral nutrition) and stopped all oral feeds. TPN is IV nutrition, so even though Zander was getting all of the calories and nutrients he needed through his IV, his stomach remained empty and thus, he still felt hungry. He cried and cried for a bottle that we couldn’t offer him. We were all miserable.

As if all of that wasn’t enough, the constant diarrhea led to a severe diaper rash that quickly progressed to a full-blown wound. It was raw, open, and located in the worst possible place — right on the inside of his cheek, so every bowel movement came into direct contact with it and caused further irritation. There were times it bled, and it hurt just to look at it. Diaper changes were traumatic. Zander screamed in pain while we tried to clean the area as gently and effectively as possible. We felt so awful for him, and totally helpless — none of the creams or ointments the doctors prescribed for him seemed to be making a difference. Eventually, the Wound Care team was called in to assess it and prescribed a wound dressing paste. It was the only thing that actually seemed to help. We continued with frequent diaper changes and diligently reapplied the paste while his medical team worked to get a handle on the diarrhea so that the wound would actually have an opportunity to heal.

In an effort to heal his wound, the nursing team recommended allowing Zander to go diaperless and “air it out” as much as possible. He didn’t love it, but we tried to make his tummy time as enjoyable as possible with a little help from his friends.

After weeks of experimenting with various treatments including nitazoxanide, oral IgG, and IVIG, Zander’s symptoms began to improve. His poops became less frequent, his weight crept back up, and the rawness of his diaper rash began to show signs of healing. He was slowly weaned off TPN and IV fluids and reintroduced to formula. But the recovery was slow and fragile. The virus lingered, and even after we thought we had turned the corner, his symptoms returned and he tested positive again a few weeks later. The doctors explained this wasn’t unusual for someone with a weakened immune system — Norovirus can take weeks or even months to fully clear. The setbacks were incredibly frustrating and ultimately delayed Zander’s long-awaited transition to outpatient care (more on this later).

Thankfully, SuperZan has since made a full recovery from Norovirus, but that stretch of time certainly left its mark. The constant diaper changes. The isolation. The hunger cries we couldn’t soothe. The fear of even further setbacks just when we thought we were finally on the mend.

We’re still learning that this journey isn’t a straight line — it’s full of starts and stops, progress and setbacks. But with each wave that knocks us down, we rise a little stronger, a little wiser, and a lot more grateful for the days that are quiet, steady, and uneventful.

Here’s to more of those days ahead. 💛