With cancer, we always played the game of will cancer cancel/interrupt this plan we are making? Now with Crohn’s we play the game of is this a normal random thing that happens to a kid or is it Crohn’s?
Harper has been having was we call “bubbles” in her mouth. They started out small, one at a time, inside her lip. They were clear and literally looked like a bubble landed there. Now she’s getting bigger ones on her lips and once one heals, the next one pops up. Pre-Crohn’s I would’ve thought nothing of it. I would’ve called it a canker sore and gone about our business. But now we have the game of is it Crohn’s? We asked the experts both GI and pediatrician. Next step is dentist. Luckily they don’t hurt her, they’re just annoying. But in the meantime they want to check Harper’s calprotectin again. That’s the original frozen poop test that showed us Harps Crohn’s. Her level was 4500 and 50 is normal. It’s also the test that gave us the magical 49 number showing she was in remission. I’m not excited to retest. It brings a lot of what ifs. And a lot of anxiety. My friend Cally said it best, “that the space between problem coming up and next steps is the hardest… you have gotten through this phase before and will again but it’s hell in the hallway right?!?!”
Amen! It is hell in the hallway. I don’t want to borrow trouble and if it is Crohn’s maybe it’s just a quick little round of steroids to zap it. But as we approach day 600 of SCD, a mighty feat in itself for a 10 year old, I pray that stupid test stays below 50, and we can look back at this hell in the hallway as a minor bubble.
No comments:
Post a Comment