Monday, October 3, 2011
Have you SEEN that donation widget over to the right?? Wow, people are amazing! That's not even the total for the team, which has reached just over 2K! Can you believe it? So many people are doing so much good to help those fighting cancer beat it, have a better life, and better future! Redundant, perhaps. But it's worth saying.
Now for Alaina updates. She had a cbc done today. We have to wait to admit her into the hospital for her next phase of chemo, called Interim Maintenance, until her ANC (the part of the white blood cell that fights off bacteria and infection) is back up to at least 750. Normal persons range from 1,500-5,000...right now, today, she was 200. Anything below 500 is neutropenic, which basically means she has no immune system. Isolation it is! But, her hemoglobin (basically the part of the red blood cell that gives her oxygen) is normal (yay! Thanks to a transfusion on Friday) and her platelets (stuff in red blood cells that help clot and keep you from bleeding to death) are also up in the low 100s. They have to be at least 75 for us to start the next round, so this is good. And, her ANC being low isn't so good for immune system, but good for us...we wanted to start the next round next week so 1. Alaina can be in the hospital around the same time as her friend Rylan, who also has high risk ALL, 2. Assuming all goes as planned, she'll be home for Halloween and not in the hospital, and 3. We/She could have a week off!
So, unless anything weird happens this week that lands her in the clinic, ER, or hospital, we should be uneventful until Monday. On Monday, she gets another spinal tap, and another bone marrow asparate (yeah, that's a giant needle going into her bone and sucking out marrow...wanna know how brave and tough my baby girl is? She did it the first time with just LITACANE! She was fully awake. And then didn't talk to anyone for two weeks who wasn't mom or dad, and can ya really blame the kid? I was still in the hospital with Anderson when she had to do this so daddy was with her....he said she screamed at the top of her lungs "GET ME OUTTA HERE!!!!" Crushes my heart but somehow brings a smirk to my face....she's got some personality!)
After those procedures, we'll head to the hospital, get checked in, and set her up on fluids. She has to reach a certain level before they give her this chemo, which is High-dose Methotrexate. I'm probably butchering all of the spellings, but oh well, go phonics! Then, this chemo runs on the IV for 24 hours. Then they have to flush it out of her system so she has to stay in the hospital until a certain level (they want to make sure the chemo doesn't rest on any of her organs, etc...always a great thought, right? Nothing like a little reminder you're dumping poison in your baby). All of this typically takes 3-4 days. Her friend Rylan is a month ahead, so he's already done two of these sessions and I have a feeling I'm going to have a lot cut out for me keeping up with Alaina and her "robot" (IV machine). The thing about 2-year-olds is, they rarely seem to care/remember they are hooked up to something through their port. Someone needs to invent a proximity detector and motorized IV machine so it knows when to follow the patient and at what speed.
The only other thing up with sweet Alaina is her skin. Once again, she's gotten these horrible raised bumps/blisters/cracks on her hands and feet. Very red, itchy, and dry. They also showed up on her knees and elbows. Doc and nurse weren't exactly sure what it was (another scary moment) but Doc thinks it MAY be an allergic reaction to her Bactrim. Bactrim is one of the meds she has to take every week, 2 times a day, 3 days in a row to keep her from getting a certain pneumonia that is deadly to cancer patients. So, we're skipping her dose this week (makes me VERY edgy and nervous) but from now on she will get a substitute that's more of a broader antibiotic, but seems to work for this type of pneumonia as well, and it's given via IV once a month. If this is the case, it also makes the fifth allergy. FIVE allergies in 3 months! Poor baby.
I'm sure you can tell I rely a little on humor to keep me going. I have to. Sometimes I'll be driving and a song will play on the radio and it'll bring me back to that first week we found out. Even to the day, which I only vaguely talked about once. I'm always afraid of going down that tunnel of thinking/remembering...afraid of where it will lead me emotionally.
So, thanks to all who keep up with my blog about my precious baby. And thanks to those who've contributed in some way, shape, or form to either the walk or her or our family. It means so much, and I don't ever think I'll be able to put into words HOW MUCH, and the DIFFERENCE it's really made to all of us in the Jones family.
Shine On! Because one ray of light has the capability to touch so many lives.