Olivia Caldwell Foundation Blog - A blog about child loss and childhood cancer
The Olivia Caldwell Foundation is a nonprofit that was established in November 2013 in honor of Olivia Caldwell, who passed away at just 20 months old on October 22, 2013 after a 16 month battle with an astrocytoma (brain cancer). Our mission is to provide funding for childhood cancer research and programs to improve the lives of children battling cancer.
This morning as I was eating breakfast with my little boys, I made the mistake of getting on Facebook. The first image to catch my eye was a memory from 6 years ago. It was a reminder that on this day 6 years ago we were celebrating Olivia’s very last chemo treatment after she beat brain cancer.
Of course, that wasn’t Olivia’s last chemo treatment ever. In reality, the cancer would return just a few short months later and before the end of 2013 she would be gone.
That reality hit me like a tidal wave this morning and before I knew it I was sobbing. My boys looked at me with tears in their eyes, unsure of what to do with their mommy’s emotions.
There’s no poignant way to say that.
You can be trucking along, believing that you are doing well, and managing your grief while going through the motions in life. And then just like that, grief sneaks back up and smacks you. Grief wants to make sure you remember that you are in fact still grieving no matter how much time goes by.
Grieving my daughter isn’t just about grieving her actual death. It is also about grieving the loss of her future and my future with her. It’s grieving the loss of who she would’ve become.
Her twin brother, Wyatt, is turning 7 next week. We are planning his birthday celebrations and going through a daily countdown until that big day. His excitement brings me so much joy!
But Olivia should be celebrating her 7th birthday too. She should be planning a birthday party too, excitedly telling us about what she wants for her birthday, and which friends from school she wants to invite.
She should be here.
But she isn’t.
Cancer stole that from her and from all of us.
Instead, I am left with the memory of the smiling little girl in that picture. And the daily reminder that I want to do something great to honor her.
Each year we ask for our friends, family and supporters to donate the dollar amount of the year Olivia would be turning if she was still with us. This year, we are asking that everyone who can donates $7 in honor of Olivia’s 7th birthday.
Our goal is to raise $7,000 this month! To date we have raised $2,150 towards our goal! Will you help us reach $7,000? That is enough to pay for 7 genetic profiles for children being treated at Children’s Hospital Colorado.
The Olivia Caldwell Foundation is a 501c3 nonprofit based in Casper, WY that was established in memory of Olivia Caldwell. Olivia passed away from brain cancer at 20 months old in October 2013. To date, the Olivia Caldwell Foundation has given $325,000 to pediatric cancer research in just 5 years. Learn more about the foundation and donate by visiting http://www.oliviacaldwellfoundation.org.
Christmas Season is one of my most favorite times of the year. I’ve loved it ever since I was a young child and I think I might love it even more now that I have a family of my own.
I love sitting quietly in my living room at night after a long day with no light except the glow from our Butterfly Christmas tree. I love the excitement of my children counting down each day until Christmas morning. I love the time spent with family. And more than anything I love the spirit of giving and loving on others that exists this time of year.
But there’s also another underlying reality of this season. The reality that despite the beauty that exists so many of us are hurting deeply, and far from cheery.
That reality exists for me too. I had one Christmas with my daughter. ONE. Her first and her last before cancer stole her from me at 20 months old.
The year that she died, she passed at the end of October, and by the time Christmas rolled around her loss was still so incredibly fresh. I had no strength but I was also desperate to make the holidays amazing for Olivia’s twin brother.
So I got up, I slapped on a fake smile, I decorated, made a big Christmas breakfast, and seriously overcompensated by giving our son about a million toys.
I wore that fake smile like a badge of honor, willing myself to just be okay. But I wasn’t okay. And sometimes, even more than 5 years later, I’m still not okay.
But that is okay too.
Believe it or not, it is actually more than okay to not be okay sometimes.
That was a lesson I had to learn the hard way when I finally began to process through the loss of my daughter and other life circumstances that led to my tremendous grief.
It actually took me until I was very near a mental breakdown before I began to bask in the freedom of that knowledge.
The holidays can be really hard. This is especially true if you’ve lost a treasured loved one or are reeling from some other hurt that exists in your life and in your heart.
And rather than beating yourself up because you are lacking some Christmas cheer, take some time and acknowledge what you are feeling and the why behind it. Cry if you need to, but let it out! When you don’t and you hold onto something and bury it deep inside is when you finally reach a point of explosion. And those explosions can be much harder to come back from.
When I feel my grief coming I have learned to stop and spend some time with it. I do some soul searching and understand where the sadness is coming from. And then I let it out. I pray. I journal. I cry. I share my feelings with some treasured people, and I just rest.
And you know what? Nine times out of 10 I wake up much stronger and less consumed by grief by the very next day. I’ve managed my grief instead of letting it handle me.
So friends, if you are sad this Christmas. If you are missing someone or having a hard time wrapping your head around a circumstance in your life, just go ahead and feel it. Explore the feelings you are feeling and then learn what it will personally take for you to get your mind back to a happier space.
It isn’t an easy thing to do at first. But each time you decide to take your grief by the horns and manage it up front, it gets easier, and your grief will become less consuming!
I also take the time to try and remind myself about the positive things I have in my life. Remembering what brings me joy helps me bring my mind to a more positive space.
Yes, I lost my daughter. And yes, right now I have stressors coming at me from just about every direction. But I serve a God who loves me and He has brought me through much worse. So I am going to lift my eyes, count my blessings, and work on getting a real smile on my face. And you my friend, can do the same, even if it feels impossible right now.
Katie Caldwell-Burchett is the CEO/Founder of the Olivia Caldwell Foundation, which is a nonprofit she founded in memory of her daughter, Olivia, who passed away from brain cancer at 20 months old in October 2013. To date the foundation has given $325,000 to pediatric cancer research in just five years. You can learn more about Katie, Olivia’s story and the foundation by visiting www.oliviacaldwellfoundation.org.
This week has been rough. My head has been spinning around the 5th anniversary of Olivia’s passing.
Exactly 5 years ago yesterday, on October 22, 2013, I held my baby girl in my arms when she took her very last breath at 20 months and 3 days old.
All day long my head was filled with memories from that last day with her. I can still hear the gravely breathing she had for the last hours of her life. I can feel her shallow breathing beat against the crook of my neck, and I can hear her whimper when she wanted to be closer to me. But more than anything, I remember vividly the moment I had to hand her over to the coroner and watch her leave our family home for the very last time.
Each memory spins around in my head endlessly until the weight of it all is too much for me to even stand. And now today my thoughts revolve around that horrible morning after she passed away.
I woke up in a daze. I just knew that the events of the night before had to be a nightmare. There was no way my baby girl had actually died.
I walked out of my bedroom and her big empty room was there, staring me in the face. Sure enough, she wasn’t in it.
I walked a bit further down the hallway to get her twin brother out of his crib. I was expecting him to immediately head down the hall to his sister’s room so he could get her up. But he didn’t. My sweet little baby already knew his twin sissy was gone.
After breakfast that day we loaded up in the car and made the 2 hour trip to Casper. Olivia’s body was already there waiting for us at the funeral home. We had to go and make the final preparations for her funeral service and burial.
I sat across from the funeral staff and lashed out in anger when they began to talk nonchalantly about cremation or embalming my baby. I didn’t want anyone to touch her.
Then after the funeral home we made the trip to the church where her service would be held. We talked about the logistics of the service, the slide show and the song choices we hoped to have. It was like I was floating outside of my body. There was absolutely no way this was real life.
Before we made the trip back home to Rawlins we stopped for lunch and it was there that the tears began to flow. Wyatt was extra fussy and wouldn’t eat anything. Nothing I could do would calm him. I broke down, right there, in the middle of the restaurant with people looking at us in confusion.
That awful day after Olivia passed away was just the beginning of learning how to live life without one of my children. I wish I could say it has gotten easier over time. In some ways the pain is less raw, but it still hurts like hell each and every time she misses out on something.
This year my boys got to walk me down the aisle when I married their wonderful stepdad. She should’ve been there too.
Just a week ago we settled into our dream home as a family, and as I have worked on setting up my son’s superhero themed bedrooms, I should have been decorating a princess themed room too.
With each new family memory I am more and more aware of all that’s missing. That she is missing and nothing will bring her back or fill that space in my heart.
Olivia would love this time in life. She would have fallen in love with her stepdad just like my little boys. She would also certainly would be obsessing over each detail of her new room. She would love the space and fresh air that comes with the country living. And I would’ve loved each and every minute of making those memories with my girl.
Yesterday marked 5 years since the day I learned my baby girl was going to die from brain cancer. Normally I spend that day holed up in my house, but this year I spent my day roaming the very halls where I received that news on October 17, 2013.
Ever since we started the Olivia Caldwell Foundation we have re-visited Children’s Hospital Colorado each October to get an update from the research team and present our annual donation check. This year, our check presentation is going to happen a bit later in November, but my heart ached to visit anyways.
With my dear husband tenderly holding my hand we made our way through one of the places I both love and hate the most in this world.
Olivia’s former doctor led us around on the tour since Wayne had never been there before. He took us past the reception area, the treatment rooms, the oncology work rooms, and then carefully detoured us around the room I sat in on that fateful day. Her doctor didn’t want to go back in there any more than I did.
With each step my heart grew heavier.
I could see Olivia everywhere.
I remembered holding her for hours on end while she was pumped with poison.
I remembered the anxiety I felt as I sat in the exam rooms waiting on results.
But most of all I remembered sitting in that family conference room alone and hearing those words, “We are so sorry, but there’s nothing more we can do. Your daughter is going to die.”
After the tour of the oncology floor we walked across the medical campus to our team’s research lab. It was there that we got a brief update on the progress that’s been made over the past year using our funding.
The biggest news is that they were able to find the treatment that would have saved Olivia’s life had she been diagnosed today. I don’t know what could possibly be more bittersweet. They found the cure because of their quest to find answers for us and the funding we’ve provided through Olivia’s Foundation. But the cure still came too late to save my baby.
Today my heart hurts. I miss my daughter with every ounce of my being and I wish the cure had come quickly enough, but I am also humbled to know that my daughter is saving the lives of so many more.
You have quite the legacy sweet baby girl.
The Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric cancer research in memory of Olivia Caldwell, who passed away from brain cancer at 20 months old in October 2013. To date we have given $225,000 to childhood cancer research, and will be giving another large check in November 2013. To learn more or to donate please visit www.oliviacaldwellfoundation.org.
For more years then I care to count I lived in an alternate reality. It was built around a need to display a false sense of perfection and happiness. I was so worried about protecting the feelings and emotions of everyone else around me and our public image that I refused to let myself feel anything at all.
It wasn’t until I made the decision to end my first marriage that I went into the breakdown I should’ve had years before.
People have always told me that I’m so strong. That they would never have been able to survive the loss of one of their children or any of the other horrors I’ve experienced. But to that I say, I’m not actually any stronger than you. You just don’t know what you are capable of overcoming until God forces you to go through it.
This month marks 5 years since Olivia died. And more than any other year the anniversary is looming like a heavy, dark cloud. Sometimes feeling is anything but wonderful, but it is critical.
A major tragedy will always show you the true colors of the people around you. And while I am beyond blessed by the army God placed around me during my darkest hour, He also showed me which relationships I had to let go of as I heal. He showed me my worth in a way I had never seen it before.
I’ve learned that you can’t move forward in life without taking an inventory of everything. I looked deep within myself and God showed me who I really am. He showed me what I’m worth. And now that I am armed with that knowledge, I know there are things I put up with for years that I will never, ever tolerate again.
These days I am fixing my eyes up above and focusing on healthy relationships, while ridding myself of those that are only there to cause harm. I can now say I have a handful of dear friends rather than a large group, but they are friendships that will undoubtedly last a lifetime.
I am also tremendously blessed to be recently married to a man who loves me for exactly who I am. October is the darkest of months for me, but my sweet husband patiently wades through the trauma with me all over again. He wipes my tears when I need to cry, and lets me scream when I need to scream about the unfairness of it all. God certainly had a plan when he brought Wayne into my life.
Life will never be perfect. I am still a grieving mess more often than not, but I am in awe of how much my life has changed. How much I have changed. And that’s how I know that this October won’t break me.
Just one month ago I said “I Do” for the second time. And with that I entered a brand new chapter of life with my little boys in tow.
I am often struck by the magnitude of the changes I have gone through these past several years. I went from being a young wife and mother still reeling from the loss of my daughter to cancer, to a single mother devastated by the toll that loss had taken in my family, to a point where I can now see the true beauty that has come from all the devastation.
I have struggled with putting words into my blog for some time now. And it took awhile to realize that it is because I am no longer in a space of complete and utter devastation.
I still miss my daughter every single day, but the experience of her loss has softened after nearly 5 years. My work at her foundation makes grieving her so much easier. Putting my all into the Olivia Caldwell Foundation allows me to be her mother and say her name each and every day.
It took a long time and a ton of work in therapy to come to grips with the devastation that entered my home and my family a little over two years ago. I never wanted or expected my first marriage to end in divorce, but ultimately, divorce was the only option I had. However, even with that knowledge, I still had to deal with so much fallout and guilt from making such a terrible decision.
Life today is still sometimes hard. There are days that I am overcome with grief where Olivia is all I can think of. But I have learned how to take care of myself and to live in gratitude for the beauty that can come from the ashes of devastation.
I decided that it was time to do a blog re-design to go with this new stage in life, and that is why this blog is now “Beauty From The Ashes.” It’s time to tell the rest of my story in the hopes that it will help someone else.
I certainly don’t have all the answers. But I do know that it is possible to move forward and live a new life after loss. It might even be more wonderful then you could ever imagine.
Today I had the honor of not only being invited to attend the press conference announcing the new Care Alliance between Wyoming Medical Center & Children’s Hospital Colorado; but I also got to spend some time afterwards with Jena Hausmann, President/CEO of Children’s Hospital Colorado, and several other members of the Children’s Board and Staff. Both as the founder of a nonprofit that works to raise money for Children’s Hospital Colorado and as a parent of two children who have been treated there, I am thrilled!
This Care Alliance is something that means a lot to me. I have seen the need for better pediatric care in Wyoming firsthand.
My daughter, Olivia, was diagnosed with brain cancer at just 4 months old in July 2012 when our family lived in Rawlins. Her diagnosis came months after I first began to discuss my concerns with her pediatrician. At first it was thought that her medical problems and developmental delays were due to her premature birth. It wasn’t until she began having seizures that we were given an EEG and then sent by Flight For Life to a Denver-area children’s hospital. By the time they discovered her tumor, Olivia’s cancer had spread throughout her brain and down her spine like a spiderweb.
Her diagnosis completely changed our lives. We found ourselves suddenly spending more and more of our time in Denver as Olivia had multiple surgeries, a brain biopsy, and then began chemo treatment. We lived in Denver for a month when she was first diagnosed, and then made trips back and forth to Denver every third week so Olivia could receive treatment.
During the weeks Olivia was not in Denver for chemo, we still had to drive an hour and a half to Laramie from Rawlins so she could have weekly labs taken. And any time Olivia got a fever or became dehydrated from her treatment-related nausea, we found ourselves back in Laramie.
I was truly shocked to discover how little experience and basic knowledge the staff at the Laramie Hospital had with a pediatric cancer patient. Each time we needed to access her port, it was a lengthy ordeal that involved multiple people and a ton of unnecessary poking and prodding.
One of our experiences was especially traumatic. A nurse in Rawlins with extensive pediatric experience attempted to access Olivia’s port before one of her treatments. Something went very wrong and suddenly Olivia had blood shoot out of her chest around her port, all over the two of us. Olivia was hysterical, and honestly so was I. It was a horrific experience.
Our experiences became more and more difficult, to the point that Olivia’s medical team at Children’s Hospital Colorado decided to train me to access Olivia’s port and give her fluids from our home when necessary. Now mind you, I have ZERO medical training or experience. But they were more confident in my ability to take care of Olivia in our home, knowing that I would remember and follow the precautions to make the experience less traumatic for my baby girl.
While we were fortunate to have some wonderful providers in Wyoming who took great care of Olivia during her cancer battle, we had many, many more who lacked the training and expertise to care for her, even with the direction of her team in Colorado over the phone.
After Olivia died in October 2013, we thought our medical troubles with our children were over. But instead, her twin brother, Wyatt, was diagnosed with Type 1 Diabetes the day after her funeral. Once again we were sent by Flight For Life to Children’s Hospital Colorado. Wyatt was in full DKA and spent a few days in their PICU before being released to a team of pediatric endocrinologists at Barbara Davis Center located on the Children’s Hospital Campus in Aurora.
And to this day nearly 5 years after Wyatt’s diagnosis we still don’t have a way to see an endocrinologist specializing in pediatrics in the state of Wyoming. We are required to make the trip to Denver anywhere from 2-4 times per year so he can receive relatively simple specialty care.
Mine and my children’s experiences are not unique. I personally know countless families who have spent months in Denver after their child receives a serious diagnosis. And many more who continue to travel to Denver or Salt Lake to receive routine treatment and follow-up care.
This new Care Alliance with Wyoming Medical Center aims to help change this. Children’s Hospital Colorado is ranked in the Top Ten out of all the pediatric hospitals in the United States in many of their specialities. They are going to bring their institution’s excellence and expertise to Wyoming to help our local kids receive the best care in their own communities, by our local medical staff, whenever possible.
They are going to do this by:
Doing extensive local training with the Wyoming Medical Center staff on pediatric cancer across many departments
Allowing staff from Wyoming Medical Center to spend time at the Children’s Hospital Campus in Aurora learning from their specially trained medical staff
Increasing access to specialty care and holding clinics at the Wyoming Medical Center for a variety of specialties
Creating standard protocols for pediatric medical treatment
Streamlining the transportation of patients to Colorado if/when that becomes necessary
Streamlining communication between providers at Wyoming Medical Center and Children’s Colorado to help patients receive the best care possible
Today was just the first step forward. And as these two organizations begin working even more closely to implement the Care Alliance, I have no doubt that our local kids will see a tremendous benefit.
When our kids can receive better care at home it makes a world of a difference in their quality of life and the quality of life for their family. I am personally filled with gratitude for the work being done by both Children’s Hospital Colorado and Wyoming Medical Center to make this possible.
The Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric cancer research in memory of Wyoming resident, Olivia Caldwell, who passed away from brain cancer at just 20 months old in October 2013. To date we have given $225,000 to pediatric cancer research. To learn more or to donate please visit www.oliviacaldwellfoundation.org.
July 17th is one of my least favorite days of the entire year. It’s a day I would love to forget, but one that will always be written in permanent ink on my memory.
You see, July 17, 2012 is the date my baby girl was diagnosed with brain cancer. I took Olivia to the doctor that morning knowing she was having seizures. I was obviously deeply concerned, but I truly thought she had a neurological disorder that could be easily treated. I never imagined she had cancer running rampant inside her sweet 4-month old body.
I normally like to hibernate a bit on that day, but this year that simply wasn’t possible.
Late at night on July 16th Olivia’s twin brother, Wyatt, woke up in a lot of pain and a very swollen finger. I took him to the ER where he received some antibiotics for an infection that had developed in his fingertip and we were released to go home. But by the afternoon of the 17th he was getting a whole lot worse.
I took Wyatt into the pediatrician for a follow-up and just like that we were admitted to the hospital so he could receive IV antibiotics. My sweet little boy’s Type 1 Diabetes made it impossible for him to fight off what would likely be a minor infection for most other kiddos.
It was a truly surreal experience to be admitted to the hospital again with one of my babies on that same date.
All the sights, sounds and smells in the hospital were haunting. It was like I was right back in that hospital room with Olivia on the night we found out she had brain cancer. Each time the door opened or the machines beeped I could see her. She was so tiny, so helpless, and so, so sick.
Wyatt is back home and on the mend. Thankfully his stay was just slightly over 24 hours and as I write this now he is running around my office like nothing ever happened.
I on the other hand am still pretty shaken up. And still pretty haunted by the experience of being in the hospital again.
You truly never know what could be around the corner.
Hold your babies close. So kiss your kids tonight, tell them you love them, and treasure each night you get to tuck them in at home safely in their beds. I would give so much to be able to do that for my baby girl just one more time.
The Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric cancer research in memory of Olivia Caldwell, who passed away from brain cancer at 20 months old in October 2013. To date we have given $225,000 to pediatric cancer research. To learn more or to donate, please visit www.oliviacaldwellfoundation.org.
Something strange happens when you become a momma. Your life as you knew it melts away. It is no longer about you. Your needs, wants, dreams, everything slips into the background. Suddenly your life is 100% about this beautiful little person.
That is only magnified when you have a sick child.
I became a first time mom to twins, Wyatt & Olivia, at just 24 years old. I had read every parenting book and it still didn’t prepare me for any of it. And mothering them only became more challenging when my sweet Olivia was diagnosed with brain cancer at 4 months old in July 2012.
That diagnosis came and my entire world was turned upside down. I no longer had time to be a scared new mom. I had to become an advocate for my girl. And so I did.
I learned everything I could about Olivia’s diagnosis. I learned how to give her all of her meds, the precautions we had to take to protect her immuno-compromised body, worked with her on PT, OT and Speech Therapy to help her catch up developmentally, and so, so much more.
I spent every waking moment with Olivia. I held her for hours on those uncomfortable hospital beds as chemo was pumped through her tiny body. We passed the time with books, toys and tons of hugs, cuddles and kisses.
That little girl was my everything.
When Olivia passed away I had no idea what to do with myself. I had been her advocate and caregiver for 20 months and 3 days. Then just like that she was gone.
I have been so fortunate in my life to be able to keep being Olivia’s caregiver and advocate through the foundation bearing her name. Without this work I know without a doubt I couldn’t have survived her loss.
So thank you to all of you who support the Olivia Caldwell Foundation! Thank you for remembering my baby girl and helping her memory to live on! She might have only lived for 20 months on this earth but thanks to you she is alive and well and changing the lives of countless other children through the research funded in her name.
The Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric cancer research in memory of Olivia Caldwell, who passed away at 20 months old in October 2013. To date we have given $225,000 to pediatric cancer research. To learn more or to donate please visit www.oliviacaldwellfoundation.org.
Five years ago I visited the Butterfly Pavilion in Denver, Colorado with my (now) ex-husband, my Dad, brother, and our twins, Wyatt & Olivia. This family excursion took place during one of our trips to Denver so Olivia could continue treatment for her second bout with brain cancer.
I didn’t know it then but that day is now one of my most important and beautiful memories. It is the last day I can remember Olivia doing really well before her health tanked and we lost her just two short months later.
On that day, Olivia held my hands and we walked around the butterfly garden for hours. My precious girl who was never able to take steps on her own or even crawl, was able on that day to be a normal little kid. She stared at those butterflies, in awe at their beauty and ability to fly around her. She giggled as they flew past her face and landed on her arms.
It was such a beautiful day.
But after losing Olivia that place had become another piece of my heartbreak. I honestly thought I would never be able to go back. I knew I would see her everywhere and just the thought of doing it again withour her was too much.
Then two weeks ago our family took a trip to Denver to watch my younger brother graduate from college. We ended up renting a house just a mile away from the Butterfly Pavilion. During a trip to the grocery store with my fiancee we suddently came face to face with the Butterfly Pavilion. Immediately my heart sank and tears flooded my eyes.
I started telling Wayne about that beautiful day with Olivia. He asked if we should take the boys there that weekend. And for the first time that which seemed so impossible wasn’t anymore. And before I could think it through any further I said okay.
Then two days later we walked hand in hand through the front doors of the Butterfly Pavilion with my two little boys, my parents, and my brother in tow. And what I thought would be really sad experience ended up being filled with such joy! I did see Olivia everywhere, but when I did it brought a smile to my face. And that smile was only made brighter as I watched my little boys love each moment.
Butterflies have always been such a big piece of Olivia’s story and in my love for her since she passed. It’s only fitting that a visit to the Butterfly Pavilion would be such a healing experience.
As they say, perhaps the butterfly is proof that you can go through a great deal of darkness yet become something beautiful.
And this life, grief and all, is beautiful.
The Olivia Caldwell Foundation is a 501c3 nonprofit that raises money for pediatric cancer research in memory of Olivia Caldwell, who passed away at 20 months old in October 2013 after a 16 month battle with brain cancer. To date we have given $225,000 to pediatric cancer research. To learn more about Olivia’s story or to donate please visit www.oliviacaldwellfoundation.org.