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?
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.
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.
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 firstname.lastname@example.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 email@example.com 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 - firstname.lastname@example.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:
Parenting is wonderful and exhausting all at the same time - which is a statement any parent would agree with. Between the hustle and bustle of school, sports, homework, and trying to stay on top of the never ending piles of laundry, parenting is a daily marathon that is sure to test your patience, while also stretching your heart to new limits of love.
Having a child with a complex medical condition only makes that parenting marathon more difficult. You have all of the normal stressors of parenthood, while also adding on your child’s special needs that require even more careful management. This medical super marathon of parenting is something I have experienced with two of my own children, and it is anything but easy!
When my daughter Olivia was 4 months old she was diagnosed with brain cancer. Her journey required a lot of special care, including learning how to access her mediport and give her IV fluids at home when needed. I also had to give her liquid feeds via her feeding tube, keep track of a whole slew of medications, give her steroid injections, balance doctors appointments with a whole host of therapists to help her developmental skills, and more. Caring for her was a full time job and one I would do all over again in a heartbeat!
The day after Olivia’s funeral her twin brother, Wyatt, was diagnosed with Type 1 Diabetes. His own diagnosis has presented a new medical super marathon all its own! For him I’ve learned the delicate (but time consuming) balance of making sure he never runs out of his medications or supplies. I have to make sure I don’t order too soon for insurance to cover the cost but also not order too late that he runs out of supplies. I’m also constantly changing his insulin levels on his pump, keeping track of when his last pod was inserted or when his CGM sensor will need to be changed. There’s also doctors appointments to keep track of and constant communication with anyone else who takes care of him to make sure his needs are met and his diabetes is cared for properly even when we aren’t in the same place. Thank God for technology to help with our communication, including a CGM that sends information about his glucose levels to my cell phone.
These experiences with my children have taught me a lot about advocating for my children while trying to maintain my own sanity. Here are a few tips I would love to share:
I hope this advice will help you in some way if you are navigating through life with a child who has a chronic or complex medical condition! If you have any other tips you would like to share, please reach out! We would love to hear from you. You can email me directly at email@example.com.
I'm not here to talk about everyone’s obsession of pumpkin spice lattes and the early (dare I say too early) introduction of Christmas decorations in October. No, today we’re going to talk about how the change of seasons can bring a feeling of hope but only if you let it.
It's in our nature to be resistant of change. Though we might enjoy each season for its individuality, and though we might appreciate a change once it's taken place, there's an anxiety that comes with that build up to the actual change. Knowing change is coming tends to spark a bit of nervous energy within us, making us feel like we need to prepare ourselves or brace for impact.
And even though summer seems like a distant memory at this point, we still have lots of changes to come as winter nears. So while we might be excited about things like sweater weather and Halloween parties, we can't help but hesitate to embrace the new season.
So how can we learn to let go of the fear and anxiety around change in order to embrace the new season and become hopeful for all it can provide?
Have you stopped and taken the time to truly soak in the beauty of nature during this time of year? The changing leaves with brilliant pops of yellow, orange and red. Seeing the glistening snow on top of the mountains. The massive swarms of birds flying across the sky during their migration. If we take time every day to stop and appreciate the natural beauty of this season we will form a gratitude for all this season has to offer. One of my favorite things to do is to look out my window in the morning and see the beautiful sunrise colored sky with the snow-capped mountains in the background- it’s stunning and immediately places my mindset in a gratitude state.
The arrival of winter no doubt will bring lots of snow making travel difficult and potentially impossible. We have had plenty of snow days for the kiddos which definitely throws a wrench in our plans. But instead of letting the anxiety of all the difficulties snow can bring- that’s totally out of our control so wasting our energy worrying about it doesn’t serve us- instead, can we think about all the benefits the snow provides us? Sledding, cross country skiing, downhill skiing & snowboarding, snowshoeing, moisture for spring, the list goes on.
If you feel your anxiety start to rise when you think about the stress of the holidays, my advice is to stop in that moment and look at the holidays for all the good they provide. Going back to a gratitude mindset is going to help us shift from fear & anxiety to a place of peace and gratefulness. You can go from “how are we going to afford Christmas gifts this year?” to “I’m so thankful we have the ability to spend time as a family and make memories together at Christmas”.
The next time you feel yourself wanting to resist change, try these mindset tricks so you can find yourself in a place of gratitude. I can almost guarantee if you can do this, you’ll be amazed at how much you look forward to the change of the seasons.
Not diagnosis specific? You got it.
Works with other groups? With joy!
These are some of the most common questions we get about the Patient Advocacy Program. And they make sense. For this blog, I wanted to give some real life examples of how it all works together for Wyoming families who need support in various ways while they care for a child born prematurely, with a chronic illness or medically complex condition.
I received an email from a nurse case manager at a hospital in Denver. A family was preparing to discharge with their child, but couldn’t until they found a nurse on duty to help care for their child’s medical needs. In Wyoming, this can be a very challenging hurdle to overcome. The nurse case manager and I shared ideas of who to try and after many calls and emails, we were finally able to connect them to the Department of Health who were determined to make it work. The family was able to discharge back to Wyoming knowing that they had the medical support they would need for their precious child.
A dad emailed me in need of help with rent and groceries because they had the added expense of traveling out of state for several days of medical appointments for his child. The gas, doctor bills, and missed work days left them short when it came to other needs in the budget, but missing the appointments was not an option! We worked on several options not only for the upcoming month’s rent, but knowing this was going to be an ongoing struggle, we worked on options for the future that would always involve these appointments. We found several local food pantries that could help supplement the grocery bill. To help with rent, he applied for the Emergency Rental Assistance Program. We reconnected with the Department of Health program called Children’s Special Health to make sure he understood how they could help with some of the medical costs, care coordination and more.
A school nurse called me on behalf of a mother who was hit hard 2 days before with a difficult diagnosis for her child. I was able to connect with mom and be a listening ear as she processed her grief over the news. When she was ready, I was able to connect her to a disease-specific organization to help walk her through the days, months and possibly years ahead with almost everything they would need.
A social worker at a hospital in Denver called to see if there were any CNA course options for a mom who wanted to be able to care for her child at home herself when they got to come home. I was able to send several options along with possible scholarships and tuition cuts so that she could make her decision.
For several months, I was in contact with a mom walking through very complex medical conditions in one of her children, along with needing help with her older kids that needed some care, as well. We found counseling options, because it is HARD to manage everything in life on our own, travel expense assistance, grocery assistance, therapy support and connections to other families that have children with disabilities to be able to have that understanding and knowledge all through a local program that could help her wade through the State waiver program. We even found a wagon that accommodates her child’s specific needs. There is nothing too big or too small when it comes to caring for the whole family.
I’ve helped find diapers, toiletries and clothes for families when they were emergency life flighted out of state, medical contacts for eye care, childcare, the list goes on! If you have any questions about what the Patient Advocacy Program is and if it could be a help for your family - please feel free to call me at (307) 333-1273 or email me at firstname.lastname@example.org. I’d be happy to hear your story and work with you to connect you to the resources that can help your family during your medical journey.