Update #11: Dig a little deeper.

#ItsJoTime

Well, the euphoria of the last radiation treatment and the removal of Josephine’s needles and tubes lasted about 36 hours. Just when we think we’ve got this. We find out we need to dig a little deeper.

Friday was wonderful. Sarah Swyers Parker was not only an expert videographer for the final walk to treatment, but graciously picked up her daughter (and one of Josephine’s best friends), Eleanor from daycare to have a celebratory brunch with us! Josephine loved it. After a nice nap, we then picked up Randall from school early (and dropped off some flowers that Josephine had picked out for her teachers) and enjoyed a couple of hours playing at the splash pad at the park. We had a few friends visit to drop off dinner and Josephine was a gem – telling jokes, laughing, eating fried chicken and macaroni and cheese.

Saturday was a bit slower, the whole family headed over to Ryan’s parents (Granddad and Grandmom)’s house and we enjoyed a family lunch out. In the afternoon, we stopped by to see some other friends as well. By the time we got home and undressed the kids for bath, I noticed some hives on Josephine. Since her temp was normal and she didn’t seem too bothered, I gave her some Benadryl and put her to bed. Around midnight she woke up with a fever. Since she just finished chemo and radiation and was likely to be immunocompromised, we had to pick her up and take her to the Emergency Room. So, we headed back to the Children’s Hospital just one day after we left her last treatment.

Let me take a second to say thank you, again, to the wonderful Children’s team. I had a call from the on-call Fellow before I got to the highway and by the time we walked in to the ER, they said “You must be Josephine, we’ve been expecting you.” We had her bracelet, stickers, and the charge nurse taking us to our room before the security guard had finished looking through our bags. They had her port accessed, blood drawn, antibiotics received, and vitals taken in the first 10 minutes. In less than two hours they had determined that this was most likely a viral infection, Josephine’s immune system and blood cells were looking good, and she didn’t need to be admitted. She was given another dose of Benadryl, de-accessed, and headed home in just under two hours. We crawled back in our beds to snuggle three hours after she had initially woken up with the temperature. Wow. It was so smooth, and of course, the doctors and nurses were phenomenal.

I will also take a second to talk about how awesome our daughter is. Ryan and I were sure, absolutely sure, that given her fever they would admit her. We raced around the house at midnight packing hospital bags for both me and Josephine. When Ryan asked if there was anything else Josephine needed, he thought she would answer a stuffed animal. Instead, she said she needed her numbing cream for her chest, because she was sure they would put a needle in her port at the hospital. Ryan and I stood there stunned. She was right. And we hadn’t even thought of it. Our three year old was keeping US straight. I applied the cream. We got on our way without a fuss from Jo.

Such is the life of being a cancer family. Scary moments in the middle of the night. Trips to the ER. Overanalyzing every sniffle and sneeze. Why did I take her to the splash pad? Why did we let her eat those beautiful tomatoes out of Adrienne Day Useted’s bountiful garden before washing them? Did she nap enough? Did she drink enough? Did we, for just a day, treat her a little too much like she didn’t have a brain tumor? Is that what we’re supposed to do? Or not? Does anyone even know what we’re supposed to do? Do we know what to do? Way down deep?

Josephine and Ryan were watching a bit of “The Princess and the Frog” this evening. Mama Odie told me us we needed to dig a little deeper. We will, keep digging, because #ItsJoTime.

“You gotta dig a little deeper

For you it’s gonna be tough

You gotta dig a little deeper

You ain’t dug this far enough

Dig down deep inside yourself

You’ll found out what you need

Blue skies and sunshine

Guaranteed

Open up the window

Let in the light, dearie

Blue skies and sunshine

Blue skies and sunshine

Blue skies and sunshine

Guaranteed”

-CHW