I feel like I left everyone hanging, so I will give a quick update before bed. Sorry for the request for prayers and then...nothing! Well the LP went absolutely wonderfully. The best one yet, I think I will have to solicit prayers more often for those. She woke up fine, no crying, and did not get any fever. Her ANC was at 1300, so they are leaving her at 25% methotrexate and 50% 6MP, and we'll see what next month's counts look like. Clinic was such a long day. They had to give her chemo before the LP, so they did that, and we chatted with her doctors. I sure love them. Then we headed down for the LP. Then back up for her pentamidine. That always makes her sick during the infusion, but then she feels better when it's over. The pharmacy made us wait forever, until one of the nurses had to "break some knee caps" as she put it, and finally got the meds. LOL


Steroids have been rough this time, they increased her dose because she is growing (woot!woot!), but it has made things more difficult. She has the usual sleeplessness, and is quite sick from the dreadful little pills. They have been causing her some bone pain this time, she hasn't even wanted to walk the last couple days and says her bones hurt. So I have been carrying her around most of the time. We are pretty beat, hence the lack of updates. This morning was her last dose, it will be a few days of wearing off and we will be back in business.

She was asking all day yesterday to go to the store, so I finally took her and got a couple things at the grocery store. She was so beat (maybe from getting 5 HOURS of sleep) she fell asleep right in the back of the cart. She missed the whole thing!

Her food cravings have been different this month too. Usually she craves junk food, but this time it has stayed pretty healthy. It's been a nice change. Well, aside from the 10 bowls of fruity pebbles a day, she is choosing somewhat healthy foods. Bread and butter, stuff like that. Thanks for checking in, and look for some pictures soon, I have a lot of them to post, just can't seem to find the time.

4 comments:

Anonymous said...

thanks for keeping us updated. i love to hear how things are going. Fruity Pebbles...YUM!

Love,
Kathy Powell

Lisl said...

Well I hope you find those pictures.I really want to see the.I hope some off them show off her wonderful long hair.

Anonymous said...

The prayers are forever yours, thank you for the update...I want to come and see this new growing Brinley!! and Jade and Taylor and Mylee xoxoxoxox miss you ;)

Josh and Kandice said...

I'm so glad to hear she's doing well. We need to make up for our missed triple date!:) Looking forward to some pictures of your cute family.