Catching up...

Alright, I'm a slacker!  It's been a month since Charly's last chemo and LP, and I ended up bringing her back for chemo again yesterday without an update.  I’m going to post an extra long update, and swear to do better in the future.

Friday, March 14, 2014

We came back Monday from Orlando with a cold...again. I was so fed up, that I booked a triple appointment for Charlotte, Naomi, and I with our GP, Dr. Hoggard. I was probably the least symptomatic, but I figured if the girls were positive for strep, I wanted us all on antibiotics.  It was starting to feel like we were recycling the same bug over and over.

Dr. Hoggard, our GP (who incidentally, hasn't seen Charly since her diagnosis), checked us all out.   He asked about Charlotte's hospital visit 2 weeks before, because the hospital sends up updates every time we go in.  I explained that it was because Charly’s ANC level was so low, they admitted her.

After reviewing us all, he put us all on antibiotics, and gave Naomi some cream for her acne, AND that awesome make-the-kid-sleep-through-the-night cough syrup.  Bonus!

The next day was Charly’s chemo and LP visit.  It was at 11am, and Charly wasn’t allowed to eat until her LP was over.  They were backed up, and she didn’t end up eating until almost 2pm.  Poor kid.  Since she was coughing, they gave me the option to wait until next month for her spinal tap.  Maybe I’m a horrible mom, but I said to just go ahead and do it.  I couldn’t imagine making her skip another breakfast, and by that time I knew our appointment for the next month would be after lunchtime because it was so late in the day.   Charly went through the procedure with flying colors – no problems whatsoever.

Her ANC level was 700 – the cold knocked her down again.  Thankfully, that meant that her nightly chemo dosage would not be increased.

April 11, 2014

Charly just had chemo yesterday.  Her ANC is 1400!  That means they aren’t going to increase her chemo again. She would need 2 months in a row with levels higher than 1900 for them to do that.

It’s my opinion that our difficult December and January was because her dosage was just too high.  She was catching all the bugs from kids at school, then her ANC would be high because her body was fighting off infection.  The high ANC levels made the docs keep increasing her dosage, which just increased her susceptibility to catching colds. The lower dosage that she’s been on since she went neutropenic at the end of February appears to have been more beneficial for her in regards to fighting off colds. (Alycia’s theory, not substantiated by the medical professionals).    It could also be the end of cold and flu season… who knows.

I’m so grateful that Charly has had a month free of any coughs or sniffles or fevers.  It’s been so wonderful! 

Her skin rash came late this month.  The dermatologist said it was from steroids, and she won’t get over it until she can be off the steroids for a couple months.  The oncologist got to see the rash in its full glory at the visit yesterday.  They both hummed as they looked at it, but unless its life threatening, there’s nothing they will do about it.  The cream the dermatologist gave us helps slightly, but I feel bad.  It looks itchy and painful when it’s in full bloom.  It usually last about a week to 10 days, then clears up.  Then comes back after she’s been off steroids again.

I’m resigned to seeing her face all rashy.  They almost look like hives now, instead of pimples.  It also seems to be climbing down her neck.  I will be happy to see the steroids go, but she’s on them for 5 days each month until she is completely done with chemo.  She is on them again this week.  I’m prepared for another week with a grumpy, hungry girl.  Thankfully, they wear her out, so she crashes about 8pm while she is on them. 

Overall, a great appointment.