Mary Evelyn had her first "survivor" appointment on June 23, the day before the fourth anniversary of her diagnosis. At the survivor appointment, we visited the clinic at Scottish Rite for a lot of tests and then met with specialists to go over the late effects that Mary Evelyn may suffer due to the various chemo drugs, radiation and so on. One of the valuable things that CHOA did was to give us a notebook that lists all the chemos that Mary Evelyn had and the possible long term effects of them so she will have that information organized and ready for any other doctor to see later in her life. There are lots of late effects, many of which have to do with being at risk for other forms of cancer, fertility issues, other scary things and of course many are still unkown because there have been so few long term survivors of neuroblastoma.
It would have been a very scary appointment if we weren't so grateful to have the opportunity to be there after all she has been through. However, I wondered what Mary Evelyn thought of it all.
So far Mary Evelyn is not experiencing too many of the late effects. She has hearing loss and thyroid damage. She is starting medication for the thyroid. She will also see a pediatric urologist later this summer to see if everything is OK with all that. When she has to urinate, she HAS to go and it will be great to have that all checked out.
She hasn't been using her hearing aids as much as we hoped because she continues to have gunk coming out of her ears, mostly her left ear. It is a lot of stringy gunk. Last Friday they vacuumed some of it out and she screamed in pain. She screamed more than she has in lots of worse looking medical procedures, so it had to be very painful. Her ENT is putting her on a different antibiotic ear drop and Bactrim for the next ten days in another attempt to clear it up. It is frustrating because the gunk has been a problem now for over a year in spite of three sets of ear tubes. It hardens and causes her to have a much bigger hearing problem. I'm not convinced they've found the real cause yet.
When she has had her hearing aids in, there is a marked difference in how she hears. The first test with the aids in showed almost completely normal hearing!This will be wonderful for her because not being able to hear very well can cause her to do things like yell "Go, Cheese, Go" at cheer leading camp when she should be yelling" Go, Chiefs, Go!".
We are grateful and happy that we have such comparatively small things to concern us as we watch our little girl growing up suddently into a big first grader- I almost forgot to mention that she is suddenly reading lots of things and becoming very independent.
She even made me an edible lunch the other day!
I hope you are all having a great summer!Thanks for checking in with us!
