So, we had a rheumatology visit last week. I’m embarrassed to say it was our first visit in a YEAR. Our last visit was in May, 2014. We had another scheduled last September – and then the doctor needed to reschedule and they left me a message…and I kept forgetting to call and boom! It was May again. Obviously, that can only happen when things are going really, really well.
Caitlin has actually been volunteering at the hospital two days a week. Eventually, she was scheduled down in Peds Rehab, where she saw all of the therapists and nurses that have watched her grow up – and they would gape and marvel at how tall she is, how mature – how fast time has flown and how miraculous her progress has been. It wasn’t long before she was permanently there each week – filing, helping out and making appointment reminder calls. After so many hours spent there over the years…what a thrill to be there as part of the team, instead of as a patient. Then it was realized that she is overdue for a visit and the nurses told her to remind me.
When I called, the receptionist did not know her name and suggested that maybe she had been dropped from the system. “Just look for the 2 massive three-ring binders”, I said. “That’s her file.” Ohhhh….yes! Caitlin! Yes, of course! It’s been awhile…..
Seeing her doctor is like visiting family. I am filled with a feeling of gratitude and appreciation for him….and we have such a long, shared history. Hugs all around. Smiles all around. Sharing stories… the driving, the new boyfriend she has….the colleges she has visited. And from him – his poor puppies attacked by coyotes…his summer vacation plans…his suggestions for becoming a nurse. And all the while through the chatting, he is inspecting, bending her knees, elbows, wrists – feeling each finger, turning her head, raising her arms up – having her make what he calls the ‘Buddha prayer hands’ to test her wrist flexibility. He glances at me with raised eyebrows and a shrug and a smile at the corner of his mouth.
There is nothing. No inflammation. No signs of active disease. The remission continues.
“Well, what do you want to do?” he asks my daughter.
“What do you mean?”
“Are you kicking me out?” She asks incredulously.
“Not exactly the words I would use….” he pauses…”But I do have 800 patients on the waiting list, and you don’t need me. You are done.” I silently add in my head…”for now.” Because I don’t have the courage to ask him if he thinks it really possible that we are done for good- I don’t want Caitlin to hear the answer…and I’m not sure I could handle it if I acquiesced to that possibility and it turned out he was wrong. A recent article outlined a limited study that examined flares after condition control and treatment withdrawal. Surprisingly, the study found that systemic kids are the least likely to flare after condition control, and in the first year after stopping treatment – which is something I have never, ever heard of before. If anything – it’s my experience that it’s a fairly long, rough road with very few smooth patches for systemic kids. Which is one of the reasons that I have always found Caitlin’s remission so mysterious and miraculous. And I am not using those words flippantly.
Then again – I always remind myself that it’s the sickest kids I see most – and the parents who are struggling through the rough days that are posting and asking questions and reaching out for the most part. Are there a bunch of kids out there on “PRN” status? Are there a bunch of young adults who are “done” with all this? Maybe there are… a bunch of JA warriors who graduated on and are so busy living normal, pain-free lives that they aren’t around to tell us that it’s possible. That it can happen.
It has been another 15 months of no medication. And that was a short stint of meds after 2 years of no medication.
We decided that a series of baseline x-rays is in order… to see how the hip implants are doing, and to get a sense of the level of deterioration in her knees, wrists and ankles especially. He vaguely referenced the need for initial films in case of ‘future replacement surgeries’ – and I know he means that her knees might have too much damage, even without future disease activity. But I don’t dwell there. Because we are PRN now.
We decide that we will make an appointment next summer. So that she can come see him after she knows where she will be going to college, and he can make recommendations for care providers in that area – most likely an adult rheumatologist – because she will be transitioning.
Here we are. Officially PRN. I’ve still got my JIA mom membership card. But I would gladly turn it in for Emeritus status, if such a thing exists. No guarantees. But lots of Hope!