When we were at LPCH to see the doctors for her monthly check-in they were concerned that it could possibly be pertussis!
With so many families not vaccinating their kiddos it really puts kids like Keira at a greater risk. She had her vaccines up to 12 months, but once she was diagnosed with cancer + OMS we were told we could not vaccinate her anymore. The only way to know for sure was to do a nose swab (which is NOT fun, especially with a kid on high dose steroids).
Thank goodness the test came back negative.
Here is a picture of Keira with one of the nose swabs.
Would you want that thing stuck up your nose?! Ouch!
Sadly, even after the dex pulse Keira continued to have a rough time. She got sick again!
To make things more stressful, her behavior and sleep were off. These can be early signs of active OMS so we were worried that things might be slowly heading in the wrong direction for her treatment.
We know there is nothing we can do but hold the course... continue to expect her to follow the rules (at home and at school) and follow through with consequences when she doesn't listen.
We're grateful that things seemed to start calming down. She's still having a hard time falling asleep at night but she's not waking up (as often) during the night, and when she does wake up it's usually because she has to pee.
I know so many families deal with behavior and sleep issues and we want to believe it is all normal, but we know that we have to be careful that we don't miss something that might tell us what is going on with K's OMS.
The last two weeks have been much better. We met with Dr. E today and we're going to take that next scary step to reduce her dex pulse dosage starting tomorrow!
Keira is still not considered in "remission" because she is still taking monthly steroids. We know this is hard for people to understand because on the surface she seems like she is doing so well. She's been on pretty intense drugs for 2+ years and it's been almost a year since we've added the dexamethasone.
We do feel that the dex has been a good addition to her treatment plan. She's completely off the prednisone (which is originally why we added it) so we are making progress.
Now it's time to start the process to get her off of the dex.
We'd appreciate all the prayers and positive thought you can spare!