Millie S.

We took the best family vacation the summer of 2021. We spent four and half weeks on the road marveling at national parks, hiking up mountains, enjoying the Oregon Coast, and creating amazing memories with many families and friends. Little did we now our sweet Millie had a tumor wreaking havoc on her little brain the whole time. You couldn’t tell. She was great in the car, loved all the hiking and being outside, was just pure joy. But almost immediately after returning home a few days before the start of the school year, we noticed that Millie was not acting like herself. She wasn’t as happy as she usually was, she wasn’t as talkative, she didn’t like to crawl or climb up the stairs, and she just refused to walk. She just wanted to be held. All the blood work we did came back negative, but when Millie developed a nystagmus in her left eye, we headed back to the pediatrician. 24 days after getting home from our epic roadtrip, Millie was diagnosed with Medulloblastoma at the age of 16 months.

Millie’s largest brain tumor was the size of a small orange and multiple smaller nodules surrounded it. She had to have two brain surgeries within just a few days to get it all out. Following her surgeries, she had five very intensive rounds of chemotherapy every two to three weeks. All involving hospital stays and time away from her three older sisters—Lucy, Sadie, and Willa.

We knew fevers were common during treatment and how serious they were, and we were very fortunate that for the first few months of Millie’s therapy she didn’t get any fevers. That is until Christmas Eve, when we had to head into the hospital by mid-afternoon. We had just gotten home a few days earlier from round four of chemotherapy. Our older daughters cried as we pulled out of the driveway, worried for Millie and worried we’d be in the hospital for the rest of Christmas break. We were able to come home five days later but being away from the girls for Christmas was very difficult.

Millie had an autologous stem cell transplant in February of 2022. It was the hardest few weeks of her cancer journey, but it seems to have been a very successful procedure and she exceeded all expectations, being able to leave the hospital 22 days after her transplant despite a septic scare about 14 days into the transplant. We were so grateful her release was weeks sooner than we had anticipated and that she’s continued to have clear scans since her release, including most recently an MRI of her brain and spine at the end of June.

Matt and I let out big sighs of relief when the oncologist gave us the good news.  We both admitted later on the drive home that we felt like we couldn’t let all the air out of our lungs with that sigh.  There is a heaviness inside of us, a worry that Millie’s cancer will come back.  I suppose we are likely to carry that heaviness with us for a long time though we hope it will get a little lighter as time goes on and that we learn to live in the best possible way with it. We will repeat the scans again in three months.  Just enough time for us to settle into the rest of summer and hopefully forget about those scans before they sneak up on us again.

Millie’s most resent labs also looked great and appear headed towards what would be considered “normal” range.  That was also encouraging. Unfortunately, though there are no signs of cancer in the scans, Millie’s brain does have effects from the brain surgeries and all the hard, intense chemo she got.  We will be meeting with her neurosurgeon soon so he can go over in more detail what that all means and what we can expect from these changes to her brain going forward. Millie’s diagnosis has forever changed each of us. We really don’t know exactly the full extent of how her cancer treatment will affect her and what long term side effects she will have. Right now, we are just trying to adjust to a new normal. Millie is getting help with occupational, physical, and speech therapy. She is the happiest of girls, and absolutely loves chasing her three older sisters around the house. She still loves being outside, reading and being read to, playing with dinosaurs, and listening to all kinds of music. She makes us laugh every day and we are continually amazed by her strength and bravery.

If you want to read more about Millie’s journey, you can check out her CaringBridge site: