• Carla

Superhero Blood


Thursday, April 18, 2019 marked 10 months since Clare's diagnosis.


On Wednesday, April 17, 2019 Clare spiked a fever and complained of ear pain so we headed to the Emergency Department (ED) at Rainbow Babies and Children's Hospital. (Because of her Mediport, we have to take her to the hospital when she has a fever.) This had been the first time we had been back to the Emergency Department at Rainbows since the day she was diagnosed. Sure, we had been to Rainbows probably 50 times since her diagnosis, but never back to the ED.



So much has changed in our lives over the last 10 months, however, pulling up the Emergency Entrance felt exactly the same. We valeted our car and waited in the registration line. 10 months ago I told them that she was having trouble walking and had slurred her speech. This time I told them that she has brain cancer; she is on a clinical trial through Cincinnati Children's; she is on her ninth cycle of chemotherapy; her ANC a week before was just over 1,300 and while all of that sounds terrible, I think we are here due to a little ear infection and fever. We took our seats and waited for the triage nurse to call us back to the little room. This time though we didn't have to wait very long. The on-call physician at Cincinnati Children's had just submitted our referral so we were brought back quickly and given a room immediately. Within seconds of placing our bags down, two nurses, a physician and a child life specialist were in our room. Suddenly, that dread I had felt the first time we went to Rainbows came back. I didn't like feeling so important.



Upon entering the room, we took care of the important things... We ate some fruit loops, picked a movie, took off our shoes and got comfortable on the bed. We put on her numbing cream and within an hour or so, two nurses accessed her port. 10 months prior, it took every single person in the room to hold her down to get in an IV. This time she laid back, told them that she had "superhero blood" and watched as they drew her labs. She didn't complain once, unless someone was blocking her view of "Finding Dory."


While we were awaiting her lab results (and Clare had fallen asleep,) I became nervous that maybe this fever meant something more. The thing about being 10 months post diagnosis is that it is wonderful and terrible at the same time. This is only the 2nd time since Clare was diagnosed that she has had a fever. She is doing so well that I can't even believe it sometimes. And when I start to think about it more intentionally, I start to worry and search for signs that her cancer is progressing.... because that is what is supposed to happen, right?



Now that we are 10 months post-diagnosis, I know slightly more than I did in the days after Clare was diagnosed. While I know the median survival time is 8-11 months post diagnosis, I know that every kiddo is entirely different. I know that children even a few years ago did not have access to clinical trials and how lucky we are that it was even an option for her. I know that researchers are making leaps each day in terms of treating DIPG and eventually finding a cure. I know that as much as I want answers no one has them. I know that Clare believes she has princess/superhero blood that sparkles... and that has to be worth something. So, I am going to keep trusting Clare to keep doing what she is doing to make every day amazing.


We left Rainbows at 12:05 on April 18, 2019 - exactly 10 months after her initial diagnosis. This time we left with a prescription to treat an ear infection and I could not have been more grateful.

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