Lessons learned: Trusting your gut

Cancer families add unique milestones -- anniversaries -- if you will, to their lives. While some are celebratory, many are not, but are remembered just the same. For example, dates that will always stick with me are the day Austen was diagnosed (Oct. 16), her first (Dec. 15) and last (May 11) chemotherapy treatment and when we shaved her head (Jan. 2). Another date is coming up on its one-year anniversary: June 15. This is the day Austen first exhibited any symptoms of cancer, although we didn’t know it at the time. For her, it was blood in her underwear, something that is never normal for a 4-year-old.

It was a substantial amount in my opinion and the only reason I didn’t rush her to urgent care was because I had also been notified that she had fallen from a play structure at school earlier that day. She had no external cuts, scrapes or bruises and wasn’t in any pain so I let myself think it was due to the impact and decided I would just monitor her closely. Obviously, I now regret that decision but that’s a story for another time.

The next day, nothing. In fact, there was nothing for the next couple of weeks. Austen was happy and seemingly healthy. But when it happened again, I called the pediatrician. She wasn’t bleeding by the time we saw them so I explained what had happened a couple of weeks earlier. They did a brief external exam but there were no visible symptoms so they told me that it was likely just due to irritation and maybe she had been scratching. It seemed a reasonable excuse.

This pattern continued for the next several months. On and off again bleeding, usually separated by 2-3 weeks. I would call the doc and by the time she was seen, it had stopped. With no visible symptoms, it was difficult to determine what was going on. We went to pediatric Urgent Care one weekend to see if we got a different opinion. Every doctor said we had no reason to be concerned and that it was likely irritation or maybe even microscopic tearing from constipation. We were prescribed Miralax.

When the bleeding gave way to a visible mass, even multiple ER doctors and nurses at Children’s Hospital told us it was only a prolapsed urethra and gave us some hormone cream. I wasn’t comfortable with any of the diagnoses, but I was still giving them the benefit of the doubt simply because they had a white coat and I didn’t. All I had was a long list of scary Google search results. I wasn’t trusting my gut and that is the moral of this story.

Rhabdomyosarcoma is rare. Even more rare was the location of Austen’s tumor, specifically for her age. So, I understand why this was not the first conclusion everyone came to. What I don’t accept was that it was never even a consideration. If any of doctors from our first few visits had said, “Well, I don’t see anything, but bleeding at her age is still abnormal so let’s do X,Y, Z to figure out what is going on,” then maybe we could have had the answer quicker than almost four months to the day of her first symptom.

Thankfully, the delay in diagnosis did not affect her prognosis. But it could for others. Rhabdomyosarcoma is aggressive and can quickly progress. And when it spreads, it is difficult to treat successfully. If the delay had negatively impacted her prognosis, this would be a whole other type of post.

Austen’s Army doesn’t just want the general public to be aware of this disease, but we challenge the medical community to take a closer look at abnormal symptoms and commit to finding the answer if it’s not obvious at first rather than brushing off a patient or parent’s concern. But most of all, we encourage you to trust your gut and push for answers if something doesn’t feel right. You may not be wearing the white coat but you know your body (and those of your children) and that gives you a certain level of expertise that you can and should leverage when needed.