Update #20: The case of the missing peanut
#ItsJoTime
More good news! Josephine’s tumor has continued to shrink and is no longer “enhancing” on the MRI pictures, which means with the untrained eye, you can no longer see a large white mass in her brainstem. If you know how a brainstorm is supposed to look, then you can kind of tell hers is still a bit larger than normal, but the drastic swelling, mass, and distorted features are nearly gone. When she looked at the pictures herself, she professed to her oncologist, “you can’t even see my big white peanut anymore! Is it gone?!” The lack of enhancement is a great sign – one that could mean the tumor is no longer active and is not likely to return. While the odds are ever in our favor for this mass, we also have to keep in mind that the large dose of radiation we shot her with still comes with a chance of producing future growths down the road. So, we’re going to keep scanning her every 3-4 months for the next few years.
Josephine is doing great. She has no neurological symptoms at all and if you just met her, you would NEVER guess that she had ever been as sick as she was one year ago. The fact that the one year anniversary of her diagnoses is approaching is starting to feel very weighty. It was this time last year that we were struggling to diagnose her strange symptoms as she continued to decline and lose weight, her personality changing by the day. Milestones from this time last year (spring school pictures, a trip with friends, Mother’s Day, Memorial Day) are some of my most difficult memories. We knew she wasn’t normal, but we didn’t know why, and the fact Ryan and I kept going to work and about our business as usual makes me sick to my stomach to contemplate. We are hopeful that the passage of these milestones with fresh eyes will ease the pain of last summer just a bit as we are lucky enough to wake up as a family each and every new day.
What was wonderful about this week, besides the good news of the missing peanut, was that we got to hang out with some of our favorite medical professionals during Nurses Appreciation Week. I know I write a lot. I know I love writing. I know I express myself, my worries, my joy, my uncomfortableness, through stories. But I can not put into words how much joy it brings me to see Jo with her nurses. She loves them. They love her. Despite screaming when her port gets accessed, Josephine loves to see Evan to have her do the tough job of the poking. Molly Napier and Michele in peds are there to drive her down the hall on a translation cart, see who can stuff more M&Ms in the mouth at once, and argue over who should eat the Cheetos or where the sheet or wires or tubes should be placed. Jo LOVES going to the hospital. She loves seeing her friends, telling them about her dance class, how she’s heading to kindergarten, and updating them on the latest exploits of #WreckItRandall. She has never once refused an appointment, an anesthesia, a poke, a measure, an exam. She bursts out of the elevator yelling at Sarah to check her in to clinic. She crawls behind the desks and sits on their laps to watch them work to help other kiddos. This experience is not one I would wish on anyone, but continuing to be in this place of visiting our friends every couple of months, well, that’s not something we are going to complain about. And to all of you medical professionals out there – be you our very special nurses or someone else’s (or perhaps, a nurse-in-training), know that your contribution to families like ours is immeasurable. The comfort, strength, and happiness you give us is matched only by your quality care. We are so truly lucky to have you. And if all it cost to get you in our lives was a trade of that damned little peanut, we sure came out winners in that deal.
We love you all. And we will see you in August. Next up, we schedule a surgery to remove Josephine’s access port and then get back to rolling in the dirt and swimming in rivers and lakes like a good southern gal at the end of school. We’re ready for summer. #ItsJoTime
It’s Jo Time 