Conversations with Chelsie Cox

Today we’d like to introduce you to Chelsie Cox.

Hi Chelsie, so excited to have you with us today. What can you tell us about your story?
On August 31, 2021 our youngest child, Amelia “Millie”, was diagnosed with leukemia. We were completely unaware of what this diagnosis would mean. You often see cute bald children going on make a wish trips, or smiling and playing. We started at children’s mercy Kansas City and was immediately told Amelia has leukemia, she would need chemotherapy, and for HOURS, we sat in the room playing with Millie. We were devastated, we have another child at school, and our lives have just been flipped upside down, shaken, and tossed around! Millie had just turned two in April, and was the LIGHT of our life. She brought a sense of peace, and happiness to our entire family, immediate and extended. While getting the run down of how the next few days-weeks were going to go. Our oldest daughter went to her grandparents and Kyle, Amelia, and I got settled into room 14, on 4Henson. We were welcomed with a sterile room, horrible Kleenexes, and the most kind nurses on the planet. They answered all of our questions, sat with us while we cried, and loved on Millie. We quickly find out that our initial stay is going to be 3-4 weeks. Chemotherapy began immediately, and we were so lost! At this time, no family could come. Not even Millie’s favorite person, her big sister Ayverie. It was devastating! A few days later we find out not only does Millie have leukemia, but it is “rare, and more aggressive.” The plus side, our stays were going to be long, but we potentially only had to do treatment for six months instead of 5 years… Each stay led us to 28-30+ days. Millie was getting the hardest of the hardest chemos and continued to play, be so silly, and always laughing. Which led to her name, Mighty Millie! She continued to defy the odds of being “sickly” from the harsh chemos and her spunk and sass ruled 4henson. While we were there we met a lot of nurses, and learned the ins and the outs of pediatric cancer. We learned quickly how isolating it felt, even when you had your entire community cheering you on, and offering love and support. It didn’t change the fact that our little girl had cancer, and was given a 15% chance at life. Despite the percentages, we kept our spirits high, our faith strong, and our love for our girls in the forefront of our mind. I fully believed that we would get a miracle, and that was keeping Millie by our side. In between our long stays, we would get 3-5 days at home before coming back and starting another round of chemotherapy Amelia would be Chasing her big sister down the hall, and stealing her toys just like before diagnosis. After many unsuccessful treatments, Millie went through a bone marrow transplant. This kicked the cancer to the curb, she was cancer free!Once getting to a recovery point from the bone marrow transplant, We lived at the Ronald McDonald, instead of inside children’s mercy’s walls, and things were starting to feel whole, as we had our Ayverie and Millie under one roof most of the time. On the 100th day of being cancer free, Millie went in for a bone marrow biopsy, a check into the marrow to see where her body is, making sure no cancer cells are showing up. When we arrived we asked to see the lab numbers from a blood draw the day before. Kyle and I noticed a drop in her platelets, that didn’t look right, which led to a big concern. Then we were told in the following days the leukemia was still there, that it was stupidly good at hiding.
we could, Either go home and let Millie live out the rest of her days playing and living, or we could continue treatment. This brought her survival rate to 10%. We were ready to defy the odds. This led us back into the hospital. A new promising treatment came out and we were excited. It was called venetoclax. It was harsh and it was yellow. It was a huge pill that we had to crush up and stick in Millie’s feeding tube. I remember her getting a dose from one of the nurses, I asked a tough question, do you think this is going to work? Erin looked at me, smiled and said sometimes we just have to find the right combination! She said this with such hope, and was so encouraging.

After many months of continuing to find the treatment that would cure Millie’s cancer, it was deemed that Millie’s cancer was not only rare/aggressive/relapsed, it was also chemo resistant. This led our team to believe our next best option would be, trying a trial at St. Jude’s. This was Millie’s only chance at beating cancer for good. It was using her own immune system and having her body kill the cancer cells. The trial was called, CAR-T therapy, targeting CD-123. It led us to a whole lot of hope! This decision wasn’t easy, and there was a lot of factors playing into getting her there, and with making the decision to move forward. Fast forward to August 31, 2022 we are at St. Jude’s. We are harvesting Millie’s t-cells. Being this is her diagnosis day a year ago, we felt like it was meant to be. So promising!

While there, Ayverie would come from home, 8 hours away on the weekends and was able to spend time with us. It was hard being away, and being in and out of inpatient. Millie got very sick and the trial appeared to be doing its job, it looked like she was going to beat the odds, for sure! Our doctors and nurses were so amazed and so excited. Everything looked good until one night she started throwing up bloody vomit and it was suggested the leukemia had bursted inside her. Meaning there was still leukemia hiding in pockets of her body. Millie was three then, she told us “I don’t want to do this anymore”. When you hear your three year old, cry out, I don’t want to do this anymore, you just know. You know it’s time. We requested to go home and was able to fly to CMH, where our “home” was. Our nurses and doctors that were most familiar with Millie’s needs, her care, and her rare needs. She was three but no one knew her body more than she did. While there we met with the hospice team and got a plan to take Millie home. She requested to be home, she wanted to be home with her doggy, Maxy Boy and her sissy.
Millie went home and was comfortable, surrounded by her favorite family, her favorite doggy, and her favorite people. She entered the pearly gates on November 17, 2022.

She left us a legacy we needed to keep alive.

Millie was known for her love for shoes, her doggy, sister, and her sassy personality, and making others laugh.

As we navigate through life without her, we try to carry her memories with every moment we have.

We started Millie’s Might foundation to do just that. With every child/ parent/ sibling/ grandparent/ family member, we meet we get to share our Millie. We get to share the hope we still hold onto, and the joy she brought us, and continues to bring others. Millie was so funny, there was never a dull moment when she was around. Whenever we are sharing her memories, she still lights up the room. People laugh, cry, and feel a spark of joy, that cannot be matched.

Millie’s Might is to show that Millie’s Mightiness continues, and we will share with others. It takes such a village to get through every moment of childhood cancer. A lot of people want to help, and don’t know how. They ask how can I help to a newly diagnosed parent. The parent doesn’t know, and though they mean well, it adds more pressure to themselves. We offer a safe place for families to share anything they’re feeling, without judgment, while being able to understand the pain they are feeling. We offer hope to families and encouragement through every decision that is laid on their hands. Our mission at Millie’s Might is to spread joy to children and families facing the battle of pediatric cancer. Being a listening ear, getting the parents out of the hospital for dinner, or sending a care package with extra soft towels to a child going through a bone marrow transplant, providing siblings with a safe place to feel heard and loved, we provide monetary assistance to families that need support, or to go do something fun with their family, and escape the pain for a little bit of joy. We recently had an opportunity to team up with a local Housekeeping Business, to provide support with getting a families home cleaned, it was a big relief on the family, it was just one thing off of the family’s load, so they can enjoy just being a family without the worry of their home being clean enough for their sons immune system, as he just went through a transplant. We have been able to bless a family with a Deanna Rose membership, to enjoy getting out as a family and spending time together.

We have had so much love and support and we want to continue to offer that to others. We are working behind the scenes to get help with better Kleenexes, for newly diagnosed families. It seems so small, but the last thing you need when you’re crying nonstop, is uncomfortable Kleenexes. You just need a hug, not a cactus!

We host an annual event, Riding for you Millie Sue a motorcycle/hot rod event where we ride together as a group, to raise funds for not only the foundation, but our chosen beneficiary. It’s an incredible event, where everyone continues to show up, year after year, and each year someone brings someone with them. We continue to grow through this event and it has truly helped us give back to families, and supports our mission!

Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
Yes and no.

Getting our nonprofit going has been challenging, but we have had such great support, behind the scenes. Our closest friends and family have really stepped in. They make our nonprofit a reality, they give us a push whenever we need it.

Learning the ins and outs of a nonprofit can be tricky.

Not being able to provide to every family, all over the world, or give everything they’d possibly need, is rough. We like to make sure everyone is taken care of, and especially feel heard.

Managing our grief, while still wanting to provide for everyone else, can be tricky. There are days that we just have to step away, and allow ourselves to take a break.

We love being able to see all the kiddos, and their families having fun together. It makes us feel so warm inside. There isn’t anything that beats families enjoying themselves!

Appreciate you sharing that. What else should we know about what you do?
Millie’s Might is a nonprofit organization. Our mission is simple, it is to provide joy, hope, and love to children and families fighting big battles.

Whenever we first started, we knew we wanted to spread joy to others, and give them light in the darkness. We had many different ideas and ways to do that. We are most known for our event, Riding for you Millie Sue, which is hosted the first weekend of June, every summer!

Our focus has shifted to focus on families battling pediatric AML( acute myeloid leukemia) being we have traveled that path and we have discovered many new families with this diagnosis. It is oftentimes a secondary cancer caused from the treatments the children get. AML, typically gets overlooked. People hear “leukemia” and will often say oh good, as it has a higher survival rate, or it is curable unknowingly thinking of ALL leukemia . With a diagnosis of AML, your treatments are very different than most. You’re immediately treated with the harshest chemotherapies, and your immune system is completely wiped out. You have to stay in the hospital without leaving for 4-6(+) weeks at a time.You don’t have the option of going outside, the playgrounds, school, or other activities that kids enjoy. While we shift our focus, we will continue to help other pediatric families.

It is what makes our foundation different from the rest, we don’t have a set item, of what may bring others joy. We know every family is different and we are proud to provide what is needed for each family, including our bereaved families. Whether it be a night out, a family trip, or a house keeper, a zoo membership. Whatever is going to help that individual family the most is what is important to us. Something as simple as a colorful towel, or soft pajamas can truly make a difference in the world of white walls, and sterile sheets. Just something to make it a touch of your own, and encouraging.

What I am most proud of is the community behind this foundation. We have been so incredibly fortunate to have the love and support. Our community not only helps us carry on Millie’s legacy, but they help provide to others in need. They are another person to stand with. When you get Millie’s might, you gain an entire army who is ready to battle with you and your family!

Can you share something surprising about yourself?
Our logo, come from Millie always giving the peace sign to everyone! She loved to say, “peace out baby!”

Our brand colors are red and yellow, because Millie’s nickname is Milbug, like a ladybug, and yellow, was her favorite color.

Milbug come from a ladybug Landing on Millies cheek right before her first bone marrow biopsy, and they continued to show up throughout her journey, or on dark days.

Ladybugs are known for good luck, so they were always there, when we needed them.

Contact Info:

• Website: https://www.milliesmight.com
• Facebook: https://www.facebook.com/mightymilbug