An update

I’m too tired to write a long & detailed post, so instead I will cut & paste part of an email that I sent to the ALL list I am on.

Last week Serenity woke up covered in bumps. Some looked like pox and others looked like bug bites. After a few calls to the pedi and the onc clinic I took her in where the pediatrician diagnosed her with chicken pox. We went to the children’s hospital and started IV acyclovir. The first day the spots were increasing like crazy but once we started the acyclovir some of them started to fade and she didn’t get any new ones.

They let us go home on IV acyclovir every 8 hours and told us to call the clinic after a week & see whether to discontinue or switch to oral. I got the feeling that there were a few docs who weren’t convinced it was chicken pox (they saw her when it was getting better) so we were told to hold off on all chemo just in case it was the methotrexate causing the problem.

Fast forward to today, day 9. She has been feeling fine, and actually only a couple scabbed over which led me to wonder if maybe it wasn’t the CP after all. Or maybe the acyclovir just did an awesome job clearing them up. She has one more dose of IV acyclovir & hasn’t taken anything but Septra & Zofran for over a week. Now she suddenly has spots all over her legs and stomach again! It makes no sense to me. Shouldn’t she have had them earlier in the week instead of on the last day (but before we’ve stopped meds)?

Then later after talking to both the oncology nurse and someone from the pediatrician’s office:

Well…I got 2 different answers but at least we didn’t have to spend the weekend in the hospital.

I called the pediatrician’s office, who called back and said they thought it was still the chicken pox and to keep taking the acyclovir.

Then the oncologist’s nurse called back and said that they were not convinced it had ever been chicken pox, so stop taking the acyclovir and see what happens.

She still has the bumps but no fever. We have a clinic appointment next week so I guess we will watch and wait.

Last night and this morning Serenity threw up several times. She’s also had some diarrhea so I hope she is not coming down with something. She is still taking only Zofran and Septra and we have an appointment at the clinic on Thursday. I worry a little bit about taking so much time off of the chemo but I understand that we need to not tax her system when she is fighting illness.

Lately she has been extremely clingy – more than ever before – and very very angry. I’m sure it’s due to all we’ve been through lately but it’s hard to handle sometimes and even harder to watch.