Every Day Evie…

You’ve Got This!

Daily Updates following Evie’s Journey

Category: Uncategorized

Day 2
Today was a pretty uneventful, but good day. Her WBC are in the 90s and her BP is slightly elevated due to the steroids so we’ve added in a BP medication twice a day. This won’t have to be for forever, but most likely for the duration of the rest of her 28 days on the steroid. Her potassium has been high sometimes and on the high normal others, so they’re closely monitoring that to check for Tumor Lysis Syndrome. Her blast cell % went from 91% to 55% which is promising/trending down. They told us that she could potentially move out of the PICU tomorrow, but if not tomorrow then latest would be Friday when she receives her PICC line. She enjoyed seeing videos of her friend Walker today; he’s so silly. We had a visit from an Occupational Therapist today where they informed us that during this treatment time, she’ll more than likely need OT 2-3x a week due to the chemo making her legs weak. Today was the first time she specifically requested a meal, which was none other than Chick-Fil-A chicken nuggets with mac and cheese and french fries and a chocolate milk. To our surprise, she ate all of the nuggets!! Making good steps forward with getting an appetite back. Thankfully she didn’t seem to have any side effects worth complaining about today. Here’s to hoping tomorrow will be the day we’re bustin’ out of the PICU!

Every Day Evie… you’ve got this!
One response to “Day 2”
1. Holland
  
  March 18, 2026
  
  We love you so much sweet girl!
  
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March 17, 2026
Day 1

Today she started out with a nice pancake breakfast though she still doesn’t really have an appetite. She received an ECHO which came back “beautiful” so today began Day 1 for chemo. She received Daunorubicin and Vincristine on top of the Dexamethasone she’s already been taking. On day 4 she will receive a round of Calpargase and only once on day 4. On day 8 she will repeat the two chemo drugs (Daunorubicin and Vincristine) and also get a round of Methotrexate. Then again on day 15 and once more on day 22. Her WBC are down to 200s which is trending good. She’s in good spirits still and was up for most of the day. The steroids are making her slightly more goofy or ornery than usual, so you have to watch your back with her haha. We met her official oncology team today and they were wonderful and seem very positive. She’s also had no side effects, yet, from the chemo, so praying she stays feeling good and positive and that we will get to move to the acute floor soon where she can have visitors (her siblings sure do miss her) and more leeway with things.

Every Day Evie… you’ve got this!

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March 16, 2026
Day 0 – Treatment Plan

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!

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March 15, 2026
Diagnosis

Today we met with the oncologist team where they delivered the news that Evie has T cell ALL (T-cell Acute Lymphoblastic Leukemia). Her WBC were critically high at almost 500,000 and her blast cells were 91%, meaning 91% of her cells were leukemia. She’ll be kept in the PICU until her levels are stable enough to be on the acute floor and we will hear more later on a treatment plan for chemotherapy. Today they sedated her to place a Cath line in her groin to get labs from instead of her hands which will eventually be a PICC line that she will be sent home with for about a week and then it’ll become a port. After placing the cath, the oncologist came in and pulled fluid from her spine to test to see if there was any leukemia in her brain, which thankfully came back negative – there is no cancer detected in her brain. While in the spinal area, they administer one round of chemo as a precaution. She woke up after the procedure in good spirits; you’d truly never know this was going on with how she’s acting. She’s doing well so far and her only requests have been an Elsa Night Light and doll, a Makeup Kit, Nail Polish and a Unicorn Toy.

Every Day Evie… you’ve got this!

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March 14, 2026