Nothing. We drove all the way to Mayo Clinic to find out why my teenager was spitting up blood for twelve weeks to hear this, “I’ve seen kids before that have been spitting up blood and haven’t been able to find the source. ” That’s when both of us knew we’d get nothing- no answer to where the blood was coming from or why it even started in the first place. But, here’s the good news. It’s stopping.
We knew a couple months ago that eventually Rosie would stop spitting up blood and we watched it go from eight ounces in a sitting to one or two ounces a month ago. The past couple of weeks, it’s been a mouthful or two at most. We were warned by our Pulmonoligist in Kansas City that eventually the blood would stop and we wouldn’t have a symptom to chase. She called it.
Still we were hoping that we’d have the best doctors in the country review all our tests, records and doctor’s notes and be able to make a diagnosis. Give us some clue as to why this happened so we could prevent it in the future or at least know how to treat whatever it was. Instead, we got honesty. Neither pulmonology nor gastroenterology believe that the bright red blood came from their body parts. They do agree that it has to be coming from the top part of Rosie’s torso but neither of them has any answers and they don’t want to run any more tests that have already been run because they don’t want to submit her to any more stress or radiation. I applaud them for that.
So where are we? Nowhere. The terribly scary journey we’ve been on for over three months is coming to an end yet there is still an air of uncertainty to it all. How can a child spit up blood for three months and no one can figure out the cause? It’s a mystery and unfortunately it will have to remain so as there’s no more blood. But, that’s the good news.
Pretty soon the mouthfuls of blood will completely stop and they may never start again. It’s possible. They’ve told us. It’s also possible that Rosie could be sitting in a class in college, feel funny and spit up blood in the middle of a midterm. We don’t know but we do have a relationship with a team of doctors that are willing to figure out what it is if it ever starts again. That’s positive. And so are we.
We’ve spent months battling migraines, severe anxiety and some bizarre mystery illness and yet, both of us have been positive. While Rosie is exhausted and quite frankly overwhelmed, she still is and I have to say, she’s a lot like her mommy. I’ve always been one to try and make something from nothing- see the good when there may be none. Find a positive in the midst of a negative or even neutral situation and that’s what we have to do now.
We did get a diagnosis here at Mayo. It was something that our doctors at home missed- not because they aren’t experienced or intelligent, but because Rosie had so many random symptoms that it took a doctor that specializes in the disorder to uncover it in an appointment and then order the right tests to get a firm diagnosis. I’m choosing to not reveal what it is because my teen needs time to process and adjust and decide what (if anything) she plans to tell her friends. Once she sorts it out and I get her permission, I will write about this part of our journey.
Here’s what I will tell you- now that we have a diagnosis, Rosie will be able to conquer this invisible illness. She has an excellent support system behind her, a great head on her shoulders and she’s one tough cookie. I’m proud to be her Mama.
This week for both of us has been emotional, exhausting and tough. Thank you to everyone who helped to finance our health insurance, out of pocket medical expenses and this trip. It took a huge burden off our family and it’s so appreciated. Please do us a favor over the next few weeks as we come back to Kansas City and settle into our new normal- give us a little breathing room. We didn’t get our answers but we were able to get something from nothing. Now we need to process, adjust and move on.