Every Day Evie…

These are some notes from the meeting with the oncologist about her treatment plan.

They started Evie on dexamethasone, a steroid to help manage the side effects of the chemotherapy. She will continue on just the steroid for Saturday and Sunday (3/14 & 3/15) to give her body some rest and not hit her body “too hard” and cause an abundance of cell death. Therefore, it is best to start with one over the weekend to help her white blood cell count come down a little, then another dose on Monday or Tuesday depending on how she is doing. The “goal” would be to get the cell count to around 100,000 (currently at 450,000).

Looking ahead, the total treatment time is around two years. The doctor estimated around three weeks in the hospital, then outpatient clinic visits once or twice a week for the first couple months. The first “round” is called “induction” and lasts 30 days but they don’t often keep patients in the hospital for the full 30 days if they are responding and feeling good. Evie will be at higher risk of infection due to her immune system being severely compromised from cancer and chemo. It is a positive she is starting treatment as the weather gets warmer so she should be able to participate in all and regular outdoor activities. Limiting indoor activities with children/people will be best for helping her stay healthy. There will be periods of time when she is lower risk or higher risk, and as that time comes, they will give guidance on how to navigate the community best to support her (i.e. eating at a restaurant outside vs inside). Evie may start to lose her hair towards the end of this month, and she may not lose all of it. By the end of treatment, she will grow it all back.

Update:

Her WBC came down from 490 to 320 which is fantastic. They told us there are a lot of preventatives now to help with side effects of chemo, so we’re praying hers are minimal. They let us know that the first month is typically the hardest. She gets routine labs drawn every 4-6 hours and has to take medication (which she absolutely hates) about the same timeframes. Still in good spirits and is enjoying doing both mine and Ben’s makeup and nails. Today was the most swollen her face has been because of all of the fluids, but it didn’t stop her from throwing on some really impressive lipstick. She’s been enjoying seeing videos her cousin’s have been sending her and is spending her time plotting out her Disney trip with her cousin Caroline.

Every Day Evie… you’ve got this!