After the last time I posted I came to the conclusion that Serenity was probably having an allergic reaction to her Septra. I didn’t / don’t know that for a fact, but I was pretty sure of it.
On Monday she was due for a CBC and Home Health informed us that we now have to pay out of pocket for home visits. So on Tuesday we took her up to Primary Children’s for the blood draw. Her legs were bruised and she seemed less energetic, so I was fairly confident that she would need a transfusion of something. As it turned out she did not; her numbers were fine.
I think the doctor and the nurse were a little impatient with all our questions. It was a busy day and they had worked us in and I kept explaining over and over that something was not right and that her symptoms didn’t make sense. The nurse insisted that it is not uncommon for the kids to get rashes that come and go during treatment for no apparent reason. I did not mention that I hadn’t given her her Septra that week because I wanted to see what would happen to her rash.
I mentioned in passing that we had not given her her dex yet because of the rash. The nurse just about fell off of her chair. Apparently when they said “hold everything,” they meant her chemo but not her steroids. I didn’t know at the time that the dexamethasone is timed to coincide with the day she gets IV vincristine and the 4 days that follow. (She had received her vincristine a few days previous.) There was much discussion about what to do and the doctor ended up coming in to see her and tell me to go ahead and start the dex.
We also resumed giving her Prevacid, which I think is what’s helped keep the vomiting at bay. I told the nurse about her bone pain and she said it could be a side effect of the vincristine, along with jaw pain. That made sense because she had complained about her mouth also and it did happen about the same time she received the vincristine.
Serenity is doing well and back to taking her oral chemo as well (methotrexate and 6MP). Her rash has gone away again. She is due for more Septra tomorrow and the next day, so we will see what happens when I give it to her.
We have so much else going on right now. Life is crazy and it is such a relief to see her doing so much better.
I’m so relieved that Serenity is doing better. I was very worried about that rash and how poorly she has been feeling. Big hugs!
It’s funny how doctors assume you know just what they’re thinking. Sorry about that, but glad to hear she is feeling better. I might be able to help you with the home health thing so you don’t have to make the trek to PCMC everytime.
A good update. I think about you and Serenity often. I pray she continues to do better.
Glad she’s feeling better. I hope that this will all be behind her very soon.
I have a daughter that has a reaction like that to Septra too. I’m glad to hear she is feeling better. Thinking of you all!