Finns Fierce Fight

18/04/2025

After a long process, Finn is finally represented at his grave. Resting with his grandparents. I am beyond impressed and grateful to John for his hard work. We miss you so much buddy. Dad and I shed tears every day, but we know you're happy and healed. Happy Easter everyone!

22/09/2024

These past few days have been filled with emotional ups and downs. For those that don't know, this weekend is the CureFest for Childhood Cancer in DC. But there's also another 3-day event called the BrainStorm Summit that is all things DIPG/DMG. I was not only able to attend this conference, but When I'm Better Foundation co-sponsored a Cruisin for the Cure event on Wednesday night. We met many families that we only knew through social media; and got to hug many others that we had met from other events or retreats, but live too far away to see more often. It was a beautiful and emotional evening. And, because of that I did not get many pictures. Once I get more pics I will make a post on our When I'm Better Foundation page.

I attended many conferences, including an advocacy workshop, focused ultrasound studies (Finn underwent one of these trials), and a conference on detection techniques. All of the conferences were recorded if anyone is interested.

During one of these conferences my fellow DIPG Mom, Christy L. Saalfeld Kirkby (mom to Ryan) and I were stopped by a lovely young lady from Children’s National Hospital. (Ryan and Finn fought at the same time and had the same doctors.) We were informed that Ryan and Finn's tumors and tissues had just been processed and were sitting next to each other ready to be studied that day! Of course that brought all the tears for Christy and I. Our boys are making a difference! 💪

We had also donated Finn's cord blood and tissue from birth, and that had also just been processed and was ready for examination.

I was not able to stay for the remainder of the CureFest, as I was emotionally drained, but many friends sent me Finn's picture on the angel wall, which is way too long. We need to find a cure for DIPG/DMG. Next year I plan on attending the entire weekend and all the events, including a rally to the white house and a candle light vigil. I hope you will consider joining me to fight for these kids.
🩶🎗🩶🎗🩶🎗🩶🎗🩶🎗🩶🎗🩶🎗🩶🎗

04/07/2024

Remi and Finn left this Earth only five days apart. Hannah, Remi's mom, and I are still so close. I love her, but both of us wish we didnt have to meet over this treterous disease. What a crappy conundrum of feelings.

It's time to focus on DIPG/DMG! Lemonade stands to fund pediatric cancer has worked in the past; and it will work again!💪

Let's give these kids a fighting chance to get better.
Let's give kids, like Remi, a chance to have 100 more kitties and a chance to visit Great Wolf Lodge. 💛

Rally-4-Remi

🎗️Join the fight at https://whenimbetter.org/

26/06/2024

Come out and see us tomorrow! The drivers are doing a meet and greet!🏇

🏇Ocean Downs Casino
🙈Bad Monkey OC

19/06/2024

Hi Finn's Fierce Fight family! I just wanted to check in. Please check out my new video on our When I'm Better Foundation page. We're still here! It's just been busy and exhausting.

Finn's birthday is this Friday. Stay tuned for a post about our sweet boy. Thank you all for continuing to support us through this journey.🩶🎗🩶

04/06/2024

I know Brilly and Finn would've become fast friends. Come help celebrate sweet Jabril this weekend for his birthday. 🪅🎉🪅

Thank you to Edith Patterson and Thomasina Coates along with the Jolly Dream Foundation for supporting this cause. 💪

Sweet Jabril is a little boy from Southern Maryland diagnosed with DIPG in February of this year. I was honored to meet him and his beautiful momma over memorial day. Come help celebrate his birthday this weekend!

23/05/2024

If you're looking for something fun to do this weekend, come out and support cancer research. We will be there all day!🩶🎗🩶

04/05/2024

Finally!! Most people that know me, know that I am not good with technology. It took me nearly four days and a Facebook time out to create this page. I can imagine Finn shaking his head at me. 😆

This page will highlight the progress we make with your donations as well as upcoming events and opportunities to volunteer.

I did not share other DIPG/DMG children on Finn's page, but that will not be the case with When I'm Better Foundation. These children deserve to be seen and heard. They deserve hope and I know Finns Fierce Fight family will give them that.

Thank you everyone for getting us through these last 18 months. Finn is so proud of us. Let's keep his fight going. Come follow our new journey on our new page. Here we come DIPG!🩶🎗💪🎗🩶

https://www.facebook.com/profile.php?id=61558999781423&mibextid=ZbWKwL

The When I'm Better Foundation seeks to fund research and trials that will cure DIPG/DMG, while also supporting families in the fight; so that the phrase "when I'm better" can be a reality.

01/05/2024

Today was absolutely amazing! The love and support from family, friends, our community, and government officials was overwhelming to say the least. We even had some celebrity athletes come out to support. Our live is available for everyone to watch. We're hoping to get it edited a bit for easier viewing.

Finn always said, I don't want to be forgotten, and we will never let that happen. What a better way to keep his memory alive by fighting against DIPG/DMG and supporting families in the fight. Like I've always said, DIPG, you're going down!

I'm sharing our website, but our face book page is still underway. Thank you from the bottom of our hearts!

whenimbetter.org

14/03/2024

Finn's Fierce Fight, along with some amazing and talented friends, have been hard at work developing a foundation in honor of our sweet boy. Our mission is to fund cutting edge trials to eventually find a cure for DIPG/DMG, while also supporting families through their journey.

No child should ever hear they only have 9-12 months to live, and during that time you will experience the unthinkable; losing every ability you have until it takes your ability to breath. And no parent should have to watch their child take those last horrible, traumatic breaths.

On May 1st we will not only announce the name of our foundation via Facebook live, but we will also have our first fundraiser. St. Mary's Bryantown will have a tag day (out of uniform) for all the kiddos in support of our efforts. It is important to us to hold our first fundraiser with them. The SMB community was and still is incredibly supportive through this journey. We are so excited to get started and for you to see what we can do to defeat this horrible disease. It's time to focus on DIPG/DMG.

05/02/2024

Hello Finns Fierce Fight family. Finn has been gone for nine weeks. It doesn't seem real; I can't understand why this happens to these sweet children.

I imagine this is what prison is like. Being in a place just counting the days down until you get to leave, while also wondering what went wrong. I saw an elderly woman in the grocery store the other day. I abruptly stopped just staring at her. I found myself jealous of her; I found myself wanting to change places with her so that I wouldn't have all this time to wait to see my son again.

His couch is empty now. I sit in his place and try to hold back the tears. He was so sick at the end and he was ready, but it is still so hard to process what happened to him. I pray every day that he is up there running and playing and learning with all the other kiddos.

We continue to see the piebald deer. He is the most beautiful white buck I have ever seen. Every time I see him I say, "Hi bud, we miss you."

I don't like the word "hate". I would even tell the kids that it's a cuss word. But I HATE DIPG and so did Finn. He wanted it defeated and so do we. We have made great progress with our next steps. Please stay tuned to Finn's page for an announcement in the next couple of months. We will need your support as we move forward fighting this devastating disease. May God bless you all.

06/01/2024

Happy New Year everyone! After taking a breath, I finally feel like Finns Fierce Fight can move forward. This Sunday will be five weeks since he made his beautiful transition and he wouldn't want us to stop. We have some big things in the works for 2024. As Finn's mom, I am dedicated to honoring his fight and all the children that have gone before and that WILL sadly come next. We need to end this horrendous cancer called DIPG/DMG. We are obviously in the infancy stages of how we want to transform his page. We hope that you will continue to follow us for our upcoming news and help us in our fight.

I want to take this opportunity to say something that has weighed heavy on my heart since Finn's diagnosis. Gratitude. If you've read my posts, you know I have major guilt over gratefulness. I pray all of you know how thankful I am for all of your kindness and generosity, but even thinking about reaching out with a text or thank you note was overwhelming and exhausting. Anticipatory grief will bring you to your knees; it will drag you into a black hole. And although most of our posts showed a happier journey, the truth is, it was an absolute nightmare. Please hear me when I say "thank you" to every single one of you. Thank you to the foundations that sent boxes of goodies and donations. Thank you to the police and fire departments that came to visit or allowed us to visit. Thank you to everyone around the country that sent Finn a card. Thank you to every individual here that sent money, gift cards, toys, had masses said for us, prayed for us, people that brought us dinner, people that offered us excursions, for the funeral flowers, people that have sent us charms and chimes and plants to remember Finn and also made donations to ChadTough in Finn's honor- the outpouring of your love will forever be part of me.

This isn't goodbye, it's simply see you later... stay tuned!🩶💛🩶