This may sound really dumb, but I read somewhere while researching treatments for Avery that her tumor is cancer. The “C” word. So today I asked…is this considered cancer? In some circles, yes. In others, no. I know…clear as mud.
Our next C word is Chemo. I have a shelf FULL of meds. I spent hours training and going over the side effects. Too much to put in one post. But here is her list of meds and kind of her regimen.
The first three days are round the clock of three different meds. Literally,at least every 6 hours she gets something. Thioguanine, Procarbazine and Lomustine. They are all pills. They told us to wear gloves when handling them…scary. Then nothing from day 4 to day 13. Then on day 14 we go to Children’s for her IV med (through her port). It’s called Vincristine. Nothing on days 15-27. Then other dose of Vincristine on day 28. Nothing on day 29-42. Then we start all over. We repeat this for a year.
There are other meds like anti-nausea meds and her regular meds (seizure and thyroid stuff) that she has been on.
Yes, it’s a bit overwhelming. I am SO lucky to be a stay at home mom. That I CAN be there to run meds to school twice a day. Or that if she gets a fever I can run her to the hospital. I know that is such a blessing for all of us. I am so grateful every day that I am married to a great man that supports our family.