Today was Ben’s 6 month visit to the Hematology/Oncology (Hem/Onc) clinic. So I thought, “hey, I can take photos and blog about his visit for Childhood Cancer Awareness Month.” I took my brilliant idea and ran with it.
The clinic, as we close friends call it for short, is well stocked with snacks, which makes sense both for kids who struggle to get enough calories and for the steroid loaded kids who can’t get enough.
Quick story. When Ben first started treatment there were procedures about weekly, and the kids would usually end up scheduled on the same day together, so we got tight with a group of kids. Back then we had a long walk to the sedation area, and we’d go in a little train of parents and staff with kids in wagons and wheelchairs. There was one little boy who was in the solid month of steroids at the start of his treatment, he was a cute little 3 or 4 year old. The kids had to have empty stomachs on procedure days because they’re sedated (procedures are usually lumbar punctures or bone marrow aspirations). Anyway, this one little guy would spend his mornings waxing poetic about food. He’d be riding along in his wagon saying, “I’m gonna have me some pieeeza, and I’m gonna have me a haambuurger with fries and ketchup, and I’m gonna have me some buhsketti, and maybe some Oreos…” And that little guy would just go on like that until his turn for sedation came.
Check in consists of getting vitals checked and then we get ushered off to a room. As soon as we put out stuff down, we make a quick trip to the nutrition area where Ben gets his chocolate milk and cereal, and we hang out.
The nurse comes in and reviews history and current med list, and then the blood draw.
Sometimes Ben does okay with blood draws. I’m not sure why, maybe it’s because he’s had a couple of hospitalizations since the last one, and several other blood draws, but Ben lost it.
I don’t blame him.
It sometimes takes numerous pokes to draw blood or start an IV, and when you’ve been putting up with that since infancy, well, sometimes you flip your lid. I meant to get a photo, but that wasn’t going to happen, so here’s the “after”.
While we wait for the blood tests to run, a doctor or mid level practitioner (PA or NP), does a history and physical exam.
Michele was the nurse practitioner who examined Ben today. We’ve known her since the very start, she’s kind, approachable, measured, smart, diligent and just plain spectacular. We went over the history of Ben’s last 6 months. There was plenty to discuss. 2 surgeries;the reemergence of Cyclic Vomiting, along with the hospitalization for that. The referral to Nationwide Children’s for motility studies. Throw in there the Parkinsonism, a visit to Infectious Disease docs, and new referrals to allergists and pulmonologists and you have yourself quite a stacked 6 months.
Or, for us, “normal”.
Michele, being the spectacular individual she is, paused at the end of the visit. She set aside her professional demeanor, and told me how bad she feels for all that has occurred.
I quipped back that, well, we’re used to it, it’s just how it is, and we roll with it.
Her eyes reddened and misted. She said, “I know, it’s normal to you, that’s why I feel bad, Ben just always has a work up like this. Every time. It’s not how it should be.”
Since I completely suck at letting my guard down, my answer was, “but he just keeps bouncing back, he doesn’t know any different.”
It seemed to make her feel better.
Then we hung out in the playroom until Ben’s counts came back, right as rain.
(Ben motioning to me to come play).
(Which I did, Ben gave me a checkup too).
Meanwhile, I put my lure at the wrong PokéStop. Sigh.