We were at Seattle Children's for MJs monthly appointments on Friday late afternoon. A different day/time because we are leaving on a vacation!! Yay!! And we wanted Madelyn to be feeling better by the time we left.
This round of Dex has been pretty good emotion wise... not too bad. She did say to me last night "Mama, I'm just so sad and I don't know why." Poor honey, now I'm so sad and I definitely know why...
She has been extremely tired taking 2-3 naps a day and she just looks tired. Dark circles under her eyes and obvious lack of energy. Her body is working extra hard this week.
Her counts were good. ANC was higher than they want so another chemo increase. Small one this time. As of Tuesday she came down with a mild cold. The elevation in her ANC probably has to do with that too.
Hem 36.2 WBC 3.7 Plat 276 ANC 2,394 ALT 126
The poor girl is up to 35 pills a day. (This is temporary though. She'll be down to her usual 10-20 per day soon). A child at school had chicken pox and as you all know this is a big deal for MJ. A known exposure to chicken pox usually means infusion of antibiotics at Seattle Children's. If we were in frontline treatment it would mean a possible inpatient stay. But luckily for MJ her doctor determined she could just do oral anti-virals. They tested her for immunity when she was first diagnosed (I didn't know this). Her titer level (measure of immunity) for chicken pox was 2.68 (Anything above 1.0 is considered immune). This measurement plus the fact that she is so far into Long Term Maintenance meant no Children's run for us. She is being treated as though she has chicken pox though. Her suppressed immune system means she could still get it. And chicken pox would mean a week inpatient stay at least. Her body is being slammed to make sure it is not there. She has to take three big purple (yay, for purple) pills 4 times a day for three weeks. Yes, you read that right 12 pills a day - 600 mg of extra drugs being pumped into her little body.
We are so happy about our Team Madelyn in situations like this. Madelyn's teacher, Tina, called us as soon as she knew. We immediately had a discussion with MJs doctors. Drugs were called in, picked up locally and she started her anti-viral just a few hours after Tina knew of the exposure. Phew.
Her ANC is probably even higher now as she just finished her last dose of Dex yesterday. This is good!! for moving into a big 'ol jet plane for 9 hours - we are off towards adventure! In the past we used to say all we needed was our passports and some money; if we forget to pack something we can get it along the way. Now we say, all we need is our passports, our money and Madelyn's meds. Madelyn's meds = half my carry on bag!
So that leads me to my new, fun thing... I have decided because I enjoy writing for this blog and I have had a "back burner" project going on for way too long... to start a new blog. I hope you will join me there too and pass it along to all your friends:
http://milk-to-go.blogspot.com/
Enjoy :)
No comments:
Post a Comment