The Butterfly Ball has grown so much in the last five years and this year we surpassed many goals with the event. We strive to create a fun adult prom experience to not only provide a unique event for people to enjoy but to avoid the same sit-down gala experience most of us are tired of. The Butterfly Ball incorporates many things Olivia loved including butterflies and getting dressed up. This event has exploded in growth and with that comes a whole team working behind the scenes to make the night run without a hitch. We start planning months in advance and love to include our constituents with deciding the theme (be on the lookout for 2023 theme voting next week)! Our board of directors plays a key role in helping plan and orchestrate this event. This post would be miles long if I talked about every aspect of the planning process so to condense it down, I’ll share a sneak peek behind the scenes of setting up for the event on the day of Butterfly Ball. The day starts before the sun even rises. OCF staff, board members and volunteers load up three trailers with all the auction items and wine for the wine pull. We arrive at the Events Center at 8AM to begin unloading trailers and divide and concur the set up. This year we were very fortunate to have Sabrina Spears with Sabrina Spears Events helping with decor. She showed up with a U-Haul full of balloon decorations! Nate’s Flowers also arrive early in the day to drop off their amazing floral arrangements they donate for the event. Tables are set up first so we can designate VIP tables and make sure they have all their extra goodies. Floral arrangements and gifts are added to the tables. Next, we have our volunteers split up to set up these stations: the silent auction tables, wine pull tables, plinko and butterfly drop. We also set up all signage and hang sponsor banners. The Silent Auction Tables have to be set up to allow for over 100 packages to be displayed. Some of these included physical items and other included single sheets describing the services offered. We have a digital auction platform we use to bid on so each of these packages has to be added and photographed for the system to operate properly. We were very excited to introduce plinko this year! We had some amazing packages donated to offer and prizes for the plinko game. After we complete set up, we all take a few hours to rest up and dress up before the big event starts! It truly is a whole team effort, and we are so grateful for everyone’s dedication to making this event something special. Remember, if you haven't checked them out yet- the 2022 Butterfly Ball Prom Photos are available for download on our website and you can get a free print at Wyoming Camera Outfitters!
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It’s February! That means, Superbowl, Valentine’s Day, National Pizza Day and many other things, depending on where your interests lie. In this post, I’d like to raise a flag for National Rare Disease Day, which is on February 28th this year. Why This? The Olivia Caldwell Foundation raises funds to support pediatric cancer research and the Specialty Pediatric Outreach Clinic. But we also have our Patient Advocacy Program that jumps even further in caring for families with children diagnosed with any - yes, any - chronic illness or medically complex condition. The goal is to help these families find support in any area of life they need to be able to take the best care of their child and themselves on this medical journey. A diagnosis is difficult and I don’t know that it matters so much to compare one over another - it’s all just hard. It can feel isolating no matter what it is, even if it is a more well-known battle like cancer (which is a broad term with many different kinds under its umbrella). To be considered a rare disease in the US, it needs to affect less than 200,000 people. We only have about 500,000 in our entire state… I’m not a math whiz, but that feels pretty lonely. According to the National Organizations for Rare Diseases, two-thirds of Americans that do have a rare disease are children. Ninety-five percent of these have no known treatments. 95%. That’s a lot of families - as rare as it is - with a very hard road ahead of them. Imagine that your child has a rare genetic disease. Most of the treatments that you would need for your child would be considered “alternative” (not FDA approved), which means they are not readily (if ever) approved by insurance, including Medicare and Medicaid. Most organizations that offer assistance typically align with those same standards, which means there is not much help out there for specific diseases to relieve the financial burden to help parents/guardians get the care that is available for their child. Now add into the scenario that you live in rural Wyoming. We have some wonderful and very gifted medical professionals in our state, but to find this sort of specialty care for children, will always take you far from home and it’s likely that it will be often. The ripple effect is more like a high tide wave when it comes to work, school, and daily life just to find some medical help for your kiddo. Now What? This is all pretty heavy and to be clear, having a rare disease diagnosis does not always come with shortened life expectancy. And it is an uphill battle for quality of life for these children and their families. How can we be supportive of our neighbors? Continue to raise awareness for their cause! Be a form of support they need - social, emotional, financial. We may not be the scientist able to find the cure, but we can be the meal train director and the dog sitter and school carpool driver and compassionate friend that helps in many areas to make the road less lonely and more manageable while these families face their diagnosis one step at a time! If you would like more information on rare diseases or National Rare Disease Day, check out https://rarediseases.org/. If you or someone you know has a child diagnosed with a chronic illness or medically complex condition, our Patient Advocacy Program is here for you. I would be happy to help you navigate where to find support that you need, especially if we have to think outside the box on how to get it! You can reach me at the office at 307-333-1273 or katelin@oliviacaldwellfoundation.org.
Coming off of one of the biggest events of the year here at the Olivia Caldwell Foundation, I feel like it is a great time to talk about self care. Self Care is so important to your daily health. Without it, you could find yourself extra stressed or worn out and unable to succeed at your daily life. Self care comes in many forms. Sleep, exercise, quiet time, boundaries, fresh air, meditation, creative activities, massage, and social media detox! Of course the list could be endless because for each person, their self care looks different. Daily, weekly, monthly, the timing depends on your own self as well. Some might need daily self care, some may only need to decompress and use self care tools once a month. But the important thing is to remember to make that time for yourself! Engaging in a self-care routine has been clinically proven to reduce or eliminate anxiety and depression, reduce stress, improve concentration, minimize frustration and anger, increase happiness, improve energy, and more. It means that you are simply being mindful of your own needs, so you are better able to support the people you care about. When you take care of yourself and are not stressed, you are better able to meet the needs of others. We are all less able to handle the stresses that come our way when we're depleted by physical and emotional exhaustion. Or, put in a more positive way, we are more resilient and more able to handle life's stress when we are feeling our best both physically and emotionally. While self-pampering doesn’t always lead to major improvements in overall health, the relaxation you get from it can trigger the relaxation response. This, in turn, can prevent chronic stress from damaging your health. As you can see, self-care is good for you inside and out! How do you recognize when you are neglecting your self-care needs? Here are 6 Signs you haven't made self-care your top priority: **You Skip or Neglect Your Basic Needs. **You're Always on Autopilot. **You're Always Doing Something for Someone Else. **You've Lost Touch with Friends and Family. **You Can't Remember the Last Time You Had Fun.. **You Don't Feel Like Yourself Anymore. If you find yourself in any of the above situations, maybe it is time to look into some strategies for self-care to get you back on track! Here are a few tips: **Maintain your friendships. **Get regular exercise. **Keep a balanced diet. **Ask for help and accept it when it is offered. **Think of yourself as your own best friend. **Plan something to look forward to, whether that be a trip with your friends or a fun outing Whatever it is you decide that refuels your insides, make sure you are doing it! The most important thing to remember is you can NOT give from an empty cup. Take care of yourself first, and the rest will fall into place!
Happy New Year! We hope that your holidays were special. And just like that, we are jetting forward into the next new season of life. For some of us, this “new” season may feel and look a lot like the one we just came out of, especially if we are caring for a child with a chronic illness or medically complex condition. With all of the buzz about New Year’s Resolutions, let’s see if we can’t dig deep and find things that can actually motivate us in our situations to actually make good, healthy steps forward in 2022. If you google search for the top New Year resolutions this is what’s going to pop up: exercise and weight loss, money management, spend more time with (fill in the blank), pick up a new hobby, put down a bad habit, and why not throw in a new career? All of those seem like good things to try (although maybe the career change is a bit risky), perhaps that’s not what we really need? I’m not going to discourage those healthy lifestyle changes and we’ll even talk about how to incorporate some of those in, but I’d like to challenge those of us who are already facing a difficult road ahead to dig a little deeper and find out: What do I really need in this new year? Reflection Do you ever feel like all you do is run and respond to life? If you have a child that has constant medical needs on top of the normal hustle and bustle of life, it can be hard to stop and cut out some time to reflect. I’d like to encourage us to do this because it may feel like a waste of time when laundry needs to be folded, meals need prepped, and meds need refilled and the list goes on (at least that’s what our anxiety may like to tell us), but reflection can actually have great results in our ability to do those things better. Can you list out the tasks that are on repeat? Can you guess what some other tasks may be that come up from time to time? No one has a crystal ball, but we can guess that unexpected things will be coming our way, too. Reflection can give us the space to see what we really need to help us move forward. Research Once we have narrowed down what our needs are, step two is figuring out how to meet them! It all sounds so easy, but when we’re stuck in our running and responding state of life, this can actually be a little tough. So hang in there! Our question now is, what is out there can help me meet this need? With all of the apps, organizations, and family+friends out there, we really can find some good quality support and ideas to help us. If organizing or time management is difficult, try google sheets for lists or a number of other apps out there that can help us keep track of things! If it’s more in-depth like coordination of medical care, ask those on your medical team for tips and advice on how to best go about the things you need to do. Try Again A big thing to remember is that trying and missing the mark doesn’t mean you can’t hit it the next time or the time after that. I hope that when you are reflecting and researching, you see that you are not alone. We all have our own journeys to walk and even if we find ourselves in the same hospital setting with the same diagnosis, there will still be differences. And yet, while each step can be unique to us, there is a lot of common ground out there. So while we try to juggle life and in or take out what we need to in this new season, remember that you are not alone! If I can be a listening ear or offer some support while you reflect, research and try, please reach out to me at (307) 333-1273 or email me at katelin@oliviacaldwellfoundation.org. We’ll start this New Year off right in ways that make the most sense for us! Cheers 2022!
I can’t believe 2021 is already coming to a close! It feels like this year has flown by. This year has been a special one for all of us at the Olivia Caldwell Foundation! In this incredible year we gave a record gift of $120,000 to pediatric cancer research, added a new specialty to the Pediatric Clinic, saw the Patient Advocacy Program take off and help an incredible amount of families, and grew tremendously as a team. I am truly humbled and thankful for all that God has blessed us with throughout this year! With our most recent gift to support pediatric cancer research, we’ve now donated an incredible $645,000 to research since we were founded in late 2013! And our partners at Stella Strong also gave a record gift of $20,000 this year to support DIPG brain cancer research! We were honored to match their gift, with $100,000 of our funding going to support general pediatric neuro-oncology research and the other $20,000 going straight to support Dr. Adam Green’s DIPG research! I am truly thankful for our partnership and our ability to do so much more because we do it together. We also had an exciting year with our Pediatric Specialty Outreach Clinic & Patient Advocacy Programs! The Clinic now has three active specialty clinics with doctors seeing patients locally for cardiology, endocrinology and pulmonology. We expect that number to rise to five active clinics in 2022. Our Patient Advocate helped an absolutely amazing 133 families during this inaugural year of our program! She was able to help families with everything from a simple one-time need to working with families long-term to ensure they got all the support they needed throughout their child’s illness. We are so excited to see how this program will be able to help even more families going forward! And finally, 2021 also brought new people to the Olivia Caldwell Foundation Team! We added two new staff members this year, plus two new board members. We are so thankful for the additions of Allison, Christy, Brad and Phil to the OCF Family! Thank you SO MUCH for all of your continued support of the Olivia Caldwell Foundation! Your belief in our mission and incredible generosity has made a world of difference in the lives of children battling cancer and other serious diseases in Wyoming and beyond! Thanks to your support our research team has found effective treatment options for 8 different types of pediatric cancers! And more children than ever are able to get the care and support they need locally. YOU made that possible! And in our books, YOU are a hero! Wishing you a very Happy New Year from all of us at the Olivia Caldwell Foundation!
We’ve all been stressed out trying to purchase the perfect gift for our children to make sure the holidays are truly magical. But there’s one thing I think we can all agree on: in 20 years our kids aren’t going to remember what they got for Christmas this year but what they will remember is the time you spent with them and how that made them feel. Time together is the most important gift we can give our loved ones. So what about the families of children battling cancer? Time is a precious resource and there’s a constant fear that it is limited. According to A Cancer Journal for Clinicians 2021, It was estimated that in 2021, 15,590 children and adolescents ages 0 to 19 would be diagnosed with cancer and 1,780 would die of the disease in the United States. Could you imagine being one of those 15,000 families that just want the gift of more time with their children? It may seem like an impossible task for you or I to imagine what that must feel like and how helpless we feel in our ability to change that. However, this holiday season you have the ability to give the most meaningful gift that has the power to truly change someone’s life: the gift of time. The Olivia Caldwell Foundation is dedicated to funding life-saving pediatric cancer research. Since our inception in November 2013 we have given $645,000 in general neuro-oncology grants allowing startup research projects to begin. This type of funding enables our research team to work off of a hunch to pursue innovation that leads to cures and better, less toxic treatment options for a variety of pediatric cancers. Thanks to OCF's funding, our research team has made several tremendous breakthroughs in the fight to find a cure for pediatric cancer. In fact, they have now developed effective treatment options for 8 different types of pediatric cancers! You can read about the primary breakthroughs in the treatment of pediatric cancer by clicking here. So maybe you will give this holiday season because you want to make a difference, because you want to do your small part to ensure families have more time with their children or simply because you want the end of year tax write-off. Whatever motivates you to give this holiday season, please know it is making a huge impact on giving families of children battling cancer the gift of time.
To be honest with you, I had no idea what I was going to write my first blog for the foundation about. But then it dawned on me that my due date for my post was the 20th Anniversary of my grandmother's passing. It was like the light came through the clouds and smacked me right in the face. Most people know what grief is. Right? I mean there is a dictionary definition and EVERY single person will be textbook perfect when grieving. But the reality is each and every person grieves differently. And I am not just talking about grief for loved ones we have lost. Sometimes it is possible to grieve for those still living. Grief includes a variety of feelings that go along with the process of moving on from a significant change or loss. Who are we to judge how someone grieves? I get it, no one wants to see someone sitting in their room crying for months with no interaction because they can’t get over the loss of their loved one. However, our courtesy to those we love is to be patient and understanding. And what about the grief of a breakup or no longer being friends with a longtime pal? We shouldn't disregard it just because no actual “loss” has been had . I have a dear lifelong friend that lost her mother a couple years ago to her battle with cancer. I can't even imagine the pain that feels like. My friend got a tattoo in memory, kept some of her mothers things and merely has had to go on with “normal” life. She loves hearing stories of her mom. It doesn't make her mad to bring her wonderful mother up. In fact, she would prefer to hear all the things. She is handling the “new normal” quite well. Sure she is still sad or mad about it from time to time, but she has learned to live with the grief in other ways. When I lost my grandmother, it was more of a denial stage for me. I knew it was coming, I knew she was no longer in pain. It was like a lie and she would be over next week. The blanket she made me when I was tiny is a source of comfort for me. I have a picture of her by my bed and talk to her when I really need to hear her thoughts or her laugh. When I see a bluebird, I know it is her. I think of her everytime I make pot roast and mashed potatoes. In the 20 years without her, this is how I cope. Then there is the grief of someone who is still living. Someone who really, if circumstances were different, would still be in your life. Say you have been friends with someone for over 10 years! Family gatherings together, kids grow up together and pretty much when you plan something, you ALL are invited. Then one day it stops. No reason, nothing done to one another. It all just stops. I can tell you the first stage of grief I have had with this is confusion, followed by anger and then sadness of all those great memories we shared. People have said that the hardest person to grieve is one that is still living. Maybe that is true, but for me, either way is hard. Oftentimes someone passes and we do the funeral or memorial and that is supposed to be a closure. Close that book and move on. You breakup with your long time partner, they move out and BAM things are perfect again. Seems pretty cut and dry right? If only it was that simple. There are so many emotions and steps that come after this. What is my new normal SUPPOSE to look like? More than likely the grief of losing a friendship or having a breakup is going to be healed a lot faster than having someone you know and love die. But nonetheless as an outsider looking in on someone who is going through grief, we only have one job. That is to make sure we allow them time. Validate their feelings with them. Cry with them, laugh with them or maybe sit quietly with them while they stare out the window. Each person's heart is different. They handle life differently. Not one individual is going to grieve or go through experiences the same as the next. And that is OK. Sure there are stages of grief and a textbook definition of what it SHOULD look like. But feelings and experiences can’t be forced. We can’t snap our fingers and bring people back to life. We can’t make all the pain of the past cure anything overnight. In a perfect world this would happen. The most important thing to remember about grief is this. There is no time limit or right way. Even if it has been 2 weeks or 20 years. The pain is still very valid, the anger, the confusion. It is all still valid. The only hope is that it can get easier in time. If you know someone going through any form of grief, check on them. Even if you are just saying hi to them. That small gesture could make all the difference to them. Don’t be afraid to talk about their loved one. Helping them understand that their loss is important and you are there, can make a gloomy day seem bright enough to continue on. “It’s hard to turn the page when you know someone won’t be in the next chapter. But the story must go on.”- Unknown
A friend of mine reminded me of a quote that I like that is originally from an unknown poet supposedly based on a simple sign on some old English parsonage containing the phrase: “Do the next thing.” With holidays already roaring through in their usual fashion, I was reflecting on this quote/poem again and I think it may be fitting for us all, but especially those of us who are struggling with the demands that come with a diagnosis or unexpected medical condition that has changed “our” world. Take that on any normal day of the year and it can easily become overwhelming. Add in the holidays with its stressors, emotions and extra commitments and we can feel tired just thinking about our lists and calendars. If you or someone you know has been living this new life of appointments, medications, hospital stays, insurance battles, set backs, etc. maybe this can be one of our mantras to not just get us “through” the holidays, but perhaps even bring a little “merry” back, as well. “Do the next thing.” The poem, as to be expected when connected to a preacher’s house, has a Christian message to it about trusting in the One who takes each step with us without the surprise and fear that we often struggle with. Whatever your religious affiliation or non-affiliation, I think we can all sit together around the idea that when we get overwhelmed but need to keep moving in life, sometimes it helps to have a splash of common sense and wisdom to drink down. So here it is - do the next thing. Whether that is the load of laundry or making it to the store for your grocery pick up - do the next thing. If it’s scheduling a follow up appointment at a hospital that has left you scarred because of the news you received when there last - do the next thing. If it’s setting reminders in your phone to make sure you hit all of the medication or treatment needs for your kiddo - do the next thing. If it’s calling a friend for some much needed down time or taking the dog for a walk or going to that office Christmas party - do the next thing. Remember, though, the substance of the poem is based on doing it in the grasp of a loving God - which means we don’t have to pretend that it’s not horrible. Or hard. Or that we just plain don’t have the capacity to feel anything anymore because our feelers are shot. If doing the next thing is having a good cry - we do the next thing. If doing the next thing means taking a brisk walk to release the anger we feel about our child’s illness - we do the next thing. We don’t have to robotically go through the motions when we’re sad, scared, angry, fill in the blank. And we don’t have to get stuck spinning our wheels because it's all a bit heavy. Whatever that next thing is for you, I hope you have the courage to do it. If you’re not even sure what that may be - reach out to those around you who may be able to see things a little more clearly from their seat and take on good advice. I find it particularly fitting that our author is unknown. That’s a big part of life, isn’t it? Not knowing what’s around the next bend, the next phone call, or sometimes even feeling like you just aren’t seen - unknown. And yet look at all of the inspiration this person has left us! If you need support - emotional, financial, or otherwise, you can always contact me and I’d be happy to help connect you to the best resources for your needs. Give me a call at 307-333-1273 or send me an email at katelin@oliviacaldwellfoundation.org and we can work together to do the next thing to inspire you (and most likely others) on the same path! PS - if you’d like to read the full poem, let me know and I can send you a link.
I have written often about the struggles that come with being a grieving mother. The loss of my daughter can be all consuming, especially during this busy season that has included the anniversary of her passing, the holidays, and eventually yet another birthday where Olivia is missing. But what I don’t talk about as often is the incredible toll the loss of Olivia has taken on her brothers. Their experiences are vastly different, and yet they both struggle with the loss of their sister in their own unique way. My oldest son, Wyatt, was Olivia’s twin brother. He knew his sister more intimately than any of us did because of that bond that started very literally while they grew together in my womb. And because of that (and the tremendous loss he suffered when she died at their young age of 20 months) he struggles a lot to this day with living a happy life in spite of missing his other half. My younger son, Landon, on the other hand, was born about a year after Olivia died, so he never got to meet his big sister. Despite being the spitting image of his sissy, he feels like he got robbed of ever knowing her, and that breaks his heart. He has a lot of questions about what she was like and talks often about how sad he is that he has only ever seen pictures of her. Their grief is different and yet both are completely valid and very real. They both suffered a huge loss and they will both have to navigate through life with the undercurrents of that grief shaping how they live. I hope as their mother that I am teaching my boys how to live a joyful life in spite of the tremendous loss we all suffered. I tell my boys often that it is possible to miss their sister terribly and still live a really happy life. I also remind them that Olivia would want them to live happily and to honor her in the way they love one another. It is equally important to me that my boys know it is okay to be sad and to miss their sister. There is no shame in the days when the tears won’t stay away and their little hearts ache for Olivia. My husband and I spend time helping the boys to know how to grieve in a way that won’t be harmful to them in the long run. We tell them to let the tears fall, talk about what’s on their mind, and then do something to help their heart feel better. That could be spending time with their family, taking a hot bath, seeking out a friend, or just getting a big hug from their dad or I. I think that’s good advice for all of us and something that I practice in my own walk with grieving my daughter. I used to spend so much time bottling up my own feelings because I was afraid I wouldn’t be able to get back up if I ever let it take me over. But now when I feel the grief coming, I embrace it. I let my tears fall. I hole up for a while when I need to. And then I do something to pull myself out of it. What have you done to help yourself or your children grapple with a big loss in your family? Please feel free to share any tips or tricks you have learned in the comment section or send them to me via email - katie@oliviacaldwellfoundation.org. November is here and many of us are already starting to think about the holidays - will there be travel involved this Thanksgiving? How many do we need to cook for? How will we afford it this year? Will we even be home to celebrate? There are so many questions we might be asking ourselves already depending on our circumstances. So I’d like to share a little bit about the art and science of gratitude, since that’s what the first Thanksgiving was all about! Why art and science? Some may say that gratitude is more of a mindfulness tactic or a religious affair and it really has nothing to do with science. And some on the other end of the spectrum have argued that it must be science because the act of gratitude can be traced through the brain and its effects seen throughout the body. Well, I’m no scientist and hold tightly to my Christian faith, so in my humble opinion I think we can have the best of both worlds however you choose to look at it and all sit at the table together this Thanksgiving (and beyond)! Gratitude - the Art Gratefulness or gratitude is something done within relationships. We can be grateful for an act of kindness someone did for us and that thankful feeling is directed towards the kind person. Oftentimes this is reciprocated with an act with the feeling like saying, “Thank you!”, writing a note, making a social media post, giving a hug, however that feeling moves you to express your gratitude toward the other person. Depending on your gauge of spirituality, this can also easily transfer over to God or your higher power. Sometimes people are overwhelmed with a sense of gratitude for a beautiful day or a closer parking spot or a feeling of comfort given in the midst of trial. However this looks, we’re going to try to find ways to take the art to a level that also affects our physical well-being! Gratitude - the Science Here’s something for a little self-reflection: “People generally do not make efforts to actively infuse their daily experiences with greater emotional quality….Although most people definitively claim that they love, care, appreciate, it might shock many to realize the large degree to which they are actually experienced in their feeling world. In the absence of conscious efforts to engage, build, and sustain positive perceptions and emotions, we all too automatically fall prey to feelings such as irritation, anxiety, worry, frustration, self-doubt and blame.” (Rollin McCraty, “The Grateful Heart,” The Psychology of Gratitude, 2004) Science has proven that people who tend to be grateful experience fewer aches and pains, improves sleep, reduces stress, and in general causes a “healthier” life. Mental health is stronger with greater ability to overcome traumas. There are more opportunities for friendships and overall better self esteem - doesn’t this sound pretty awesome? (For a quick taste of what this could look like and the studies, check out this link.) I’m feeling grateful just thinking about all of the benefits that come from being grateful! When things are difficult, it can be hard to find those things to be grateful for - those people to be grateful to. So what can we do to help relieve some of the holiday stress and tap into these benefits? Here are a few easy steps to add to your daily life:
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