Éowyn: Fight Like a Princess

11/02/2025

Remembering Éowyn and her Grampa Jim on Dia De Los Mu***os, at Éowyn's house and her older sister's house.

11/02/2025

Yesterday we finally dropped off the toys we collected at the Fight Like A Princess toy drive in September. We collected lots of good stuff to be distributed to patients at Children's Mercy Hospital. Someone even snuck in one of the fishing lures made for a fund raiser right after diagnosis!

Children's Mercy was so grateful for your donations and generosity, as are we. Our community's support reminds us Éowyn is still loved by more than just our close friends and family, helps us keep her memory alive, and gives back to a wonderful institution that treated us with kindness and compassion during a terrible time.

Happy Halloween, Sunshine. We love you bunches, and miss you terribly, every day.

09/10/2025

Happy Fight Like a Princess Day! We are excited to hold our 8th Annual toy drive benefitting Children’s Mercy. Come see us at in Major Mall. 💛🩶

09/09/2025

Tomorrow is the big day! Éowyn would be turning 13 this year. Help us celebrate her memory with a donation to Children’s Mercy.

09/08/2025

Wednesday is the 8th Annual Fight Like a Princess Day toy drive benefitting Children’s Mercy Hospital.

All Smithville School District schools are joining us in collecting toys.
Eagle Heights Elementary PTO
Horizon Elementary PTO Smithville
Maple Elementary PTO
Smithville Middle School Parent Group
Smithville School District
Sunshine Coffee Co

09/02/2025

To kick off Childhood Cancer Awareness Month tell us who you go gold for.

08/20/2025

Today should be the first day of middle school for Éowyn, her first day at the "big" school. Tomorrow Avery moves into the dorms at Iowa State. We should have six more years of a kid in the house, school sports and band performances to attend. Instead, our house is now a very, very, empty nest. It feels...hollow. Éowyn was our tiny terrorist in life, but the void left behind by her death is gigantic. It's very hard not to be overwhelmed by it right now, not to have all the joy and satisfaction of seeing our "last" kid off to college pushed out by Éowyn's absence.

Love you bunches, Sunshine. Missing you more than ever right now.

08/08/2025

The FDA recently approved the first drug designated specifically to treat DIPG and Diffuse Midline Glioma (DMG). This is the first time a DIPG treatment has made it out of clinical trials to market. For decades the only standard of care for DIPG has been radiation, both on initial diagnosis and regrowth/reoccurrence. This is the first real progress in the fight to finding a cure.

The clinical trials started for this drug (ONC201, now called Modeyso) started about the same time Éowyn's fight ended. I remember reading the very early, very promising results, and how quickly more trials and approvals for compassionate use spread, both in the US and internationally. I wish for our little girl's sake she could have had the opportunity to try this. Maybe it would have given her the time she needed to start kindergarten, let her ride the bus with her sister to school. But I am thrilled for all the kids and families that have benefitted from this already, and will benefit in the future. If even one child with DIPG gets to live a normal, healthy life because of this drug, it will be so worth it.

Still miss you everyday, Sunshine. Love you bunches.

In a historic milestone, the FDA has granted approval to ONC201 (now named Modeyso™) for the treatment of recurrent H3 K27M-mutant diffuse midline glioma (DMG) — a category that includes diffuse intrinsic pontine glioma (DIPG). This marks the first-ever approved therapy for this devastating disease, offering real hope to families who have been told for generations, "There's nothing we can do."

For decades, a diagnosis of DIPG meant only one thing: heartbreak. Found in the brainstem and most often affecting children between ages 4 and 11, DIPG robs children of their ability to walk, talk, eat, and breathe while leaving their minds fully intact. It has been an inoperable, mostly fatal brain tumor with no FDA-approved treatments. Even today, the median survival remains less than one year, and the five-year survival rate is less than 1%.

Now, thanks in large part to the early and ongoing support of the ChadTough Defeat DIPG Foundation and its partners, patients will now have access to an FDA-approved drug for recurrent H3 K27M-mutant DMG/DIPG. To date, the foundation has invested nearly $6 million in ONC201-related efforts.

Learn more about our involvement here: https://chadtough.org/research/onc201-receives-fda-approval-a-historic-milestone-for-dipg/

05/14/2025

7 years ago Éowyn left this world. We still miss her every single day. 💔💛🩶

11/02/2024

Last night we decorated Éowyn's grave for Halloween. Tonight we light her candle on our ofrenda. 💛

09/12/2024

We ended Tuesday by sharing birthday cake and singing Happy Birthday to Éowyn at her grave.

Every year we are blown away by the kindness shown to our family and the donations made. Thank you for keeping Éowyn's memory alive. The world is a better place because she was in it. Even if her time here was much to short. 💛🩶