Seeing an oncologist every three months is nerve wracking. Come on, you don’t see an oncologist for anything simple. You see one because of serious illness. My 11-year-old son sees the amazing Dr. Palumbo at Cincinnati Children’s Hospital because he has Histio. My son was diagnosed with this rare disease in April, as most of my readers already know. So between appointments, we pretend that we are not worried constantly that another lesion is going to show up. Every time Joey has a headache or muscle pain, I reassure him that it’s not Histio (even though I have no clue). When an odd rash (something annoying that seems to come along with Histio) breaks out all over his body, I tell him he has nothing to worry about. That’s usually true other than the time it ended up being the Shingles. So we hold our breath and wait for the next appointment. Some appointments require blood work, some require full body skeletal x-rays, others require MRIS, PET or Cat scans. Sometimes we know in advanced what will be required and other times we find out upon arrival. The oncology department is considered a day hospital so he is actually admitted for his appointments and we have to be discharged at the end. I think this because no one really knows how an oncology appointment might go and several patients are admitted.So after a week or so of being very anxious about Joey’s upcoming appointment, he saw Dr. Palumbo on Thursday. I fully expected Joey to have blood work since he had the shingles in between appointments but the doctor didn’t feel that was needed. I guess that was good because Joey has a lot of anxiety about needles (By the way he gets four vaccines tomorrow. That should be fun). They did check all of his vitals and order a full skeletal x-ray. That means x-rays head to toe. I worry so much about the amount of radiation he is exposed to but I have to weigh the risks. Getting another lesion and not knowing would be much worse.
Of course no one could give me the results that day. That’s just how hospitals work. So we left nervously awaiting results. Being late on a Thursday and our nurse having Friday off meant waiting through the weekend as well. I called Michelle, our nurse who we love, this morning. She reads from the report “No new lesions identified. Unchanged from prior study.” What does that mean? I understand what no new lesions means and I am thrilled. But what does unchanged from prior study mean? I ask… “It means it’s no better but It’s no worse.” Hmm… I guess I didn’t realize we were still watching the first lesion. I guess somehow I thought that it was gone after surgery. So now, I have a whole new thing to worry about, especially since her voice was not very confident as we discussed that. “Oh it hasn’t changed?” I asked. “No, let me talk to Dr. Palumbo and get back to you,” she said.
So now I wait again. I am sure I am reading into something and it is all normal. At least that is what I keep telling myself. But the waiting… oh the waiting is terrible.
Joey has another appointment in late April/early May. He will at least have blood work, a full body skeletal and MRI at this point. He will have this full workup because it will be the one-year anniversary of his diagnosis and surgery. I truly can’t believe it’s been 8 months already. I pray and hope everyday that his results come back clean because with each year, his chances of additional lesions or relapse reduce. Come May, I want to have clean test results and have one heck of a celebration – whether that’s a party with friends and family or a family vacation, I hope we are celebrating! We couldn’t have gotten through all this without our friends, family and even strangers so I can’t wait to share the results and hopefully celebrate with you in a few months!
Help us out and tell us how you deal with waiting.