This July will mark 9 years since my daughter, Olivia, was first diagnosed with an aggressive brain cancer. These kinds of anniversaries are dispersed all throughout the year, with each one just as difficult as the others.
People have often asked me how I am able to keep going when I have to not only live with her loss each day, but talk about it daily due to my work at the Olivia Caldwell Foundation. My answer is always that if it wasn’t for my ability to keep her memory alive and have a tangible way to keep being her mom, there is no way I would have been able to survive the loss of my only daughter.
It also helps tremendously to know that my daughter is paving quite the legacy and making a huge difference in the lives of other children who are battling cancer!
In fact, because of Olivia, our research team has actually found the cure for the type of cancer that killed my own daughter! And they found that cure only a few years after Olivia passed away. That fact still amazes me, even though it’s also very bittersweet.
Because of my girl, other children with her same type of cancer will not only be able to survive their battle, but the entire treatment process and diagnosis looks completely different because of the work done by our research team.
When Olivia was diagnosed with cancer, she endured a surgical brain biopsy to determine the pathology of her tumor. Her biopsy came back as a Grade 2 astrocytoma, which meant she would receive two different high-intensity chemos in the hospital via IV chemotherapy. This chemo was delivered in the hospital for 3 days every third week with the chemo making her really nauseous and it made her lose all of her hair.
If she was diagnosed with cancer today she would still have a surgical biopsy, but would also have a blood test along with it, which would tell her team what the driving genetic mutation is that is causing her tumor to grow. Today, they would be able to tell that her tumor isn’t just a Grade 2 astrocytoma, but also that it is driven by the FGFR1 mutation (which caused her immune system to turn cold and ignore the cancer cells, allowing them to run wild).
And today, Olivia wouldn’t be treated in the hospital with an IV chemotherapy that would cause her to get sick and lose her hair. Instead, she would be treated at home with an oral chemo tablet, and her hair and appetite still fully intact!
How amazing is that?! And also how bittersweet is it that this cure and treatment transformation came about 5 years too late to save my little girl?
This is why we press on and work as hard as we do at the Olivia Caldwell Foundation. We strive each day to honor the life of Olivia and to ensure that other kids don’t have to meet a similar fate.
Thank you for all of your continued support! You are saving lives and giving children a hope for a better and healthier future like never before.
It’s not a new concept that nonprofits depend on the generosity of others. Whether it be volunteer hours, small donations, monthly recurring donations, large corporate donors, volunteer board members, endowments, and the list goes on.
Here at the Olivia Caldwell Foundation we are no different. As a small staff of four we can only achieve so much on our own. We are so grateful for all of our volunteers and donors that make our mission come to fruition. Together, we have been able to donate over a half a million dollars to pediatric research teams leading to the discovery of new treatment methods and cures for specific cancers. We have been able to help numerous families of children battling serious illnesses during their stressful medical journey at no cost. AND we bring specialty care to chronically ill children in Wyoming to reduce the amount of time spent traveling to Colorado. Those are no small feats and it was only possible because of our amazing community.
However, there is more work to be done and you may be wondering how you can make a greater impact. You want to help fight for a cure, you want to make sure children battling cancer have the best chance at survival with minimal side effects, you want to make sure every family is supported so there are less family life interruptions. But you’re only one person and can only give so much, right? So how can you help beyond the transactional donation?
Introducing the concept of Peer To Peer Fundraising (P2P). You may have heard of the infamous Ice Bucket Challenge a few years ago; it was an activity involving pouring a bucket of ice water over your head to promote awareness of the disease amyotrophic lateral sclerosis (ALS) and encourage donations to research. It went viral as people challenged their network of friends to participate. It became a multimillion dollar fundraiser.
Now, the concept of creating a viral challenge of that scale may not be realistic but imagine if you could help raise awareness about The Olivia Caldwell Foundation to 10 people, and then those 10 people reached 10 more people and so on and so forth. The impact would be huge.
The beauty of P2P Fundraising is that it isn’t one size fits all. You get to choose how you want to participate; train for a 5k, challenge your gym to do a competition, challenge your coworkers to see who can raise the most, ask your boss to match your donation, auction off the opportunity for someone to tell you how to shave your beard- the options are endless and you can be as creative as you want! Whichever way you choose to fundraise the concept of the ALS Challenge remains the same. You rally your connections (family, friends, coworkers, etc.) to donate, you create awareness about our organization, and you can challenge your friends and family to do the same. Now look at how quickly you exponentially increased your impact!
If you’re interested in getting involved as a P2P Fundraiser we encourage you to join us for WyoGives! WyoGives is a 24 hour day of giving on July 14th where we all rally together to create awareness and raise funds for Wyoming nonprofits. We are looking for people who want to be advocates for OCF and raise awareness and funds through P2P Fundraising. Don’t worry, we have all of the materials you need to get going and templates to use to spread the word- your job is to get creative and challenge your network of friends and family to support your goals. This is going to be an amazing day where we all rally together and see how much of an impact we can make!
Reach out to Allison Harker, email@example.com or (307) 333.1273 to find out more information about you or your company/civic organization getting involved with P2P Fundraising.
Being self-sufficient is a good thing.
As a parent, being able to take care of the needs of your kids is also a good thing.
Sometimes in life we get thrown curveballs that come in all shapes and sizes and when they hit, it can really shake the way we are able to be the self-sufficient, capable parents we had been up to that point.
If you have a child that has been diagnosed with a chronic illness or a medically complex condition - a gene mutation, diabetes, severe asthma, rare neurological disorders, physical deformities, the list goes on - that curveball can feel like it’s the size of a wrecking ball.
Overwhelm, grief, anger, sadness, confusion - all of these emotions can come along with these diagnoses and the ability to move forward can seem crippling.
We know that asking for help can be hard, but not knowing where to ask can make it even more difficult. At the Olivia Caldwell Foundation, these curveballs are well-known and so we are taking steps to help you or someone you know be able to move forward.
Our Patient Advocacy Program is a free resource to help families with children diagnosed with a chronic illness or medically complex condition. In partnership with the Orr’s Hope Foundation and the McMurry Foundation, our Patient Advocate is here to help connect these families - your family - to the local resources they need to find whole-family health during this medical journey. We can help connect you to amazing organizations already in place within your local community without you getting lost in google searches. If you need school support, counseling, bill assistance (medical and non-medical), travel assistance to out of state medical appointments, food, housing, medical professional referrals, childcare, therapy or adaptive equipment - you name it, we’re set on listening to your needs and helping to connect you to the resources that may be the best fit!
My name is Katelin, our Patient Advocate, and I would love to assist you as you continue to be the caring supportive parent that you are for your family in a hard time. Please reach out to me at (307)333-1273 or firstname.lastname@example.org and take those next steps in for your family!