Meet the Mills-Poirier Family of Albany. They are right in betweenÂ Portland and Mid-Willamette Valley, so we get to see them at both Portland and MWV activities, and Joey is an active member of the Luminaries, Candlelighters Teen/Youth group. We spoke to Melissa Mills, Joey’s mom, about their experience with Joey’s cancer diagnosis and journey, and what has and hasn’t helped along the way.
Tell us about your family, and Joeyâ€™s cancer diagnosis.
That we found Joeyâ€™s cancer was a bit of a miracle. He has chronic kidney disease, and has been on meds his whole life. When he was 4, he suddenly got sick and started throwing up all the medications heâ€™d always taken. This continued for about a week. We couldnâ€™t figure out why he was having this reaction, and became very concerned because he wasnâ€™t getting his blood pressure medication. We drove 3 hours to the children’s hospital for tests, and they didn’t find anything. But Joey kept having issues, and so this time, we went to the ER. When a Doctor in the ER asked if Joey had been having headaches and we said yes, they did a full CT scan that showed a tumor the size of a golf ball in his cerebellum. He was diagnosed with Anaplastic Medulloblastoma, an extremely aggressive type of brain cancer.
What happened after his diagnosis?
After major brain surgery to remove the tumor, he had to learn to walk again. Once he was well enough for treatment, he went through 36 rounds of proton radiation therapy. The doctors gave him a 30% chance of survival, because this type of tumor is so very aggressive and grows so quickly. In fact, just three months before we discovered the tumor, he had a full body MRI as part of a routine check up for kidney disease. That MRI was completely clear. In the space of just 3 months, the tumor had grown and become the size of a golf ball. The doctors said if we had waited a week or so more, before finding it, he wouldnâ€™t have made it.
He ended up with a year of treatment, and then a 5 year remission period. Joey is now 14, andÂ because of the radiation and chronic kidney disease, there are ongoing health issues, like his small stature, hair loss, and memory disabilities.Â At the same time, Joey is a lot like any other 14 year old boy. Heâ€™s interested in youtube and funny videos. He has a cat he loves named â€œDragon,â€ based on a character from “Stepbrothers,” one of his favorite movies. He loves comedy – Jack Black, Kevin Hart -and Marvel & DC villain backstories. Heâ€™s really creative, still loves legos, and has an active imagination.Â Joey is sweet and introverted, and protective of his six year old little brother, Isaac. Isaac is Joeyâ€™s opposite – loud and energetic. The twoÂ like to play outside together. Isaac is slowly starting to understand how different things are for Joey, recently wondering if â€œall those medications are for Joey?â€
How did you find out aboutÂ Candlelighters programs and services?Â How did they help?
We moved to Oregon in 2019, with no connections here. When your child is sick, your world becomes so small, and you don’t have a lot of ways to find other families. WeÂ found out about Candlelighters through the Survivorship Program at Doernbecher. We connected with Mary Lou Bradley of the Mid-Willamette Valley chapter, and she connected us to Lisa to learn more about the Luminaries, Candlelighters teen/youth group.
Joey started going to their weekly zoom meetings before we went to in-person family activities. The kids in the Luminaries group were so awesome, funny, accepting and kind! He was bullied a lot in school. We were told we would need to advocate for him, so we met with the teachers, and even did a presentation to Joeyâ€™s class to educate them and also help them see he was the same as them – same interests, etc. But that didn’t stop all of the bullying and we got to the point of needing more one-on-one time because of learning issues, so we decided to home school him. Because heâ€™s homeschooled and we have moved a lot for healthcare and family reasons, he had been feeling isolated. Each time we moved, he lost friends.
Tell us about Joeyâ€™s favorite Candlelighters activity.
He loves being with the Luminaries every week. He does all their outings and our family goes to both Portland and Eugene Candlelighters family activities because weâ€™re right in the middle. Last summer, we went to the Luminaries pizza party at a home on Lake Oswego.Â At first, Joey was very apprehensive about getting on the boats for boat rides. But when he was encouraged by his friend Sierra, he got on a boat and ended up loving it! Heâ€™s really looking forward to going again this summer. He also loved the Candlelighters Christmas party.
Is there anything else you would like other Candlelighters Families and our community to know about your journey with childhood cancer?
I’d say that You’re never alone! It honestly takes a village, especially when going through something like this, and our Candlelighters community is so amazing! Reach out if you need help, or just need a friend. That goes for the adults and kids alike. Candlelighters have become like a second family to us, and it’s opened up our once very small world. Joey’s especially, which is so important for him and kids who are like him.