Caitlin's weekly update

Count was 69 today! Whoohooo! After dropping down to the minimum dose, she was still able to maintain and increase! We got two weeks worth to bring home so we've been told just to keep an eye on her symptoms. Just in time for our vacation the week after next!! Perfect timing!

The dr came by to see us today and it looked like she made a special visit because she was in jeans and a casual shirt with no white jacket on. She wanted to talk to us about Caitlin's low white blood cell count that came back after testing for the varicella titer to see if she should get vaccinated. They still haven't decided yet. Her white blood cell count is low enough that we have to bring her in if she gets a fever higher than 101. I'm not sure why because she's had a low count since the beginning. She said it was in the "moderate risk for infection" so I did some research to see what she was talking about and I think she was talking about her ANC and Caitlin has always had a low neutrophil count, but this doesn't seem to make her sicker than any other kid or catch infections more easily. So...I think I'm just not going to worry about this.

Sadly though, Caitlin got another migraine today and I caught it quickly because we were playing a game and she said she was having trouble seeing the dice (we were playing Farkle-fun game!) so I asked if she was getting a migraine and she tried to tell me no, but I knew better. Got her the Imitrex and she took it immediately. Migraine lasted about 4 hours. Not sure yet what the trigger was, but we did write down everything she ate. There was a 109 heat index today so that could have easily contributed to it!

Hope everyone else is doing well and staying cool! While I am not ready to return to work, I am definitely ready for the cooler weather!

Just heard from the hematologist. She gave the thumbs up to go ahead and start the Plaquenil since her count has been stable for 2 weeks now. I think I will wait until next week though because I want to take Caitlin in for an eye exam to get a baseline before we start her since it can cause problems with the eyes but with close monitoring of the dosage, things should be fine. I have a conference for work tomorrow through Saturday or I would take her this week. I am one of the presenters, yuck! The hematologist also said she is going to go ahead and write a letter saying Caitlin shouldn't have the varicella vaccine yet since she did Rituximab earlier this year.

Can I ask how low Caitlin's white blood cell count is? Emmy's has recently become lower, it started after she used Methotrexate, we discontinued it but her count is still lower than it has been in the past. They tested for antibodies against white blood cells in Seattle last week but I haven't heard back from the doctor.
Thanks, Shauna

YAY! Just heard back from the doctor and Emmy's tests came back negative. I'll take whatever little bit f good news can get!

Negative for what? Caitlin's wbc usually ranges from 2.0-3.5 and it should be between 4.5 to 10.5. The lowest it has been was 1.4 and that was when she was first diagnosed. Thankfully it has never dropped that low again.

Negative for antibodies against white blood cells, against red blood cells and antiphosphilipids. Emmy is at 3.6 for her white count and they wanted to make sure nothing else was going on.