We are back home now. It's always good to be in your own house, even though we are being invaded by crickets!
I talked briefly about her procedure yesterday, but I wanted to expand on it just a little. The spinal taps, or otherwise known in "our world", as Lumbar Punctures (LP for short), are done in accordance with the vincristine (chemo) and dexamethasone (steroids). These rounds are called vincristine/dexamethasone pulses. Under standard protocol, these are done once/month. Thanks to the COG research trial she is under, they come around once/ 3 months.
During the LP's, they take out 10cc's (I think) of spinal fluid (CSF) and replaces that same with Methotrexate. Leukemia cells like to hide in the CSF. Although no leukemia has every been found in Briley's CSF, it's done for precautionary reasons. Just one cell can cause a relapse. That's the reason for 2.5 years of chemo.
The dexamethasone is taken 2mg twice a day for 5 days during these pulses. During the first phase of treatment, called induction, she was on 29 straight days of the steroid. This was when she gained all of that weight and couldn't walk. The steroid in itself kills off a lot of the leukemia cells. The five days of it isn't bad, but she will start having cravings and a little attitude towards the end of it.
She also takes another chemo called 6mp every night. This chemo must be taken on an completely empty stomach. We are in a bad habit letting the kids eat a snack right before bed, so Alicia sets her alarm for 2:00 in the morning, gets out of bed, and gives Briley her chemo. This has been going on for nearly a year! We're use to it now! I know there's easier ways to do it, but that's just how we (Alicia) does it!
Briley also takes an oral form of the methotrexate once/week, except for weeks that she's getting an LP.
And there's one more routine med. She takes Bactrim 3 days a week, twice a day. It helps prevent her from getting a certain type of pneumonia that cancer patients are prone to.
Then there's the as needed meds. 2 types of nausea meds, pain meds, zantac (because of the steroids), laxative (because of the vincristine).
I kinda got off of what I intentionally wanted to talk about (her latest procedure and the fishing trip), so I will update on that tomorrow. My goal is to eventually print all of these blogs and save them for Briley when she gets older. That way, if she ever wanted to look back and read what she's been through, we would have something to let her do such a thing.
Even though she's in maintenance, she still takes a lot of meds. I know that there will be an end one day and it can't get here fast enough. Until then, we appreciate everyone's continued thoughts and prayers!