Nicole Kristian's Salon

Early birds, this one’s for you ☀️✨

Need an appointment super early?! I’ve got you! My schedule can start as early as needed to help make your hair appointment fit YOUR life!

This client comes to see me every 8 weeks right after her 5 AM workout! She does her makeup in my chair while I do her hair, and by the time we finish, she’s completely ready for work!

This week is Aplastic Anemia Awareness Week, and it was such an honor that Texas Children’s wanted to highlight Josie during this time.

Severe Aplastic Anemia is a blood disorder that causes your bone marrow to fail. Your bone marrow is responsible for making all of your blood cells and is the primary organ to your immune system.

When we first heard the words aplastic anemia, it didn’t sound too concerning. Because of the rarity of this disease, it doesn’t carry the same immediate sense of devastation that you feel when hearing about other illnesses.

But it should.

It is life-threatening.
It is consuming.
It is traumatic.

Severe Aplastic Anemia affects 1 in 2 million people, and because it is so rare, it often lacks the funding and awareness that it desperately needs.

We are so incredibly thankful for Texas Children’s Hospital.

Every physician, nurse, coordinator, child life specialist, and social worker at Texas Children’s made something so overwhelmingly terrifying feel manageable through the hardest season of our lives.

And none of this would have been possible without the incredible generosity of one selfless person we can’t wait to meet one day… Josie’s bone marrow donor.

Because of her bone marrow donor’s decision to say yes, Josie was given a second chance at life.

Without Texas Children’s and the generosity of her donor, our lives and Josie’s future, would look very different today.

Instead, she is here. She is thriving. And our family will forever be grateful for the people who made that possible.

I think I’m extra emotional this week because we’re finalizing Josie’s Make-A-Wish plans. I am beyond grateful that we’re here, at this stage, but I’m also painfully aware of all the families who never get this far. There were days we danced with her while silently wondering if it might be the last time. We have followed EVERY single guideline because we knew her life depended on it. We’ve been given news that will affect her entire life and the family she may one day want. She will have permanent organ damage from the harsh medications she’s had to take. She’s still fighting through things. We are still managing her blood pressure with medication just to keep it stable. She has walked through more than any child ever should. She was robbed of her toddler years, and we are still trying to process that.

And even after everything we’ve lived through, I still can’t fully comprehend the pain of parents who don’t get to bring their children home. No one should ever have to know that kind of loss. And that is not fair!!!

Awareness is the first step and staying silent doesn’t help the ones still fighting.

In three days, it will mark two years since we found out Josie had Severe Aplastic Anemia and her bone marrow failure. And heartbreakingly, that wasn’t even the beginning of her story.

As we are Pink Out Month for Breast Cancer Awareness, I saw a post today that stopped me in my tracks and it made me face something hard... I’ve been part of the silence. I truly love how October turns pink and how much awareness and funding pour into research. It’s beautiful and powerful.

I’ve always tried to keep my social media light, happy, and full of the good. I never want to weigh people down. But I’m realizing how important it is to talk about ALL of it!! The beautiful and great thing that we got to experience. The selflessness of so many strangers and organizations. But there are also so many extremely dark, hard, heavy days.

There are so many diseases that don’t get the attention, research, or awareness they desperately need. We have sat in infusion rooms, clinics, and hospital with children battling life threatening cancers and blood disorders. We have gotten to meet some many families and children. And it is heartbreaking to know we have walked the halls with some who are no longer here.

I watched a father grieve one son while walking into clinic for his other child. I spoke with a mother in Houston whose daughter had the same disease Josie has, and when I learned her little girl’s body wasn’t even strong enough to start treatment, my heart broke all over again. I want to help bring Severe Aplastic Anemia into people’s vocabulary.

Severe Aplastic Anemia is considered “rare” and life-threatening. It’s estimated that only 300 to 900 people in the U.S. are diagnosed each year... that’s roughly 2 in 1 million. But after being part of so many support groups filled with families facing the same diagnosis, that number is hard for me to accept.

I think, much like breast cancer once was, Aplastic Anemia simply isn’t talked about. It’s not at the forefront, it’s not widely understood, and very few people even know it exists. And when something isn’t seen, it isn’t funded so research stays incredibly limited.

(2 of 2) It’s still so incredible to us to look back and see how far she’s come. We’ve been on this journey for over two years now… from chronic ear infections, to near liver failure, to complete bone marrow failure, to a bone marrow transplant. We have watched her skin and eyes turn yellower by the day. We have had a doctor pray over her. We have watched her life be completely dependent on blood product transfusions for so long. She has gone through some really scary things! She has received so many IV's and blood pokes. She has had 7 different surgical procedures. She has had her body wiped completely out to zero with aggressive chemos and radiation. We have lived in one hospital room for 41 days. We have been separated as a family for over 1/2 a year. And today, here she is strong, resilient and proving to the world she is a warrior and can do ANYTHING!!

(1 of 2) How cool is it that Josie's appt this month fell on the exact same day, 1 year ago, that we got the ok to leave Houston and return back home! I have never wanted to be home so badly and wrap my arms around my entire family and have my entire world back in one city again! It's still hard for me to wrap my head around that we have been back home for an entire year already and still not done! Since getting to come home to Midland, we have made 16 trips back to Houston for appointments!
This trip was extra special though, the whole family got to come!! And if that wasn’t cool enough, the NMDP was at the hospital doing a bone marrow drive the same day as her appointment! And even cooler, my cousin Andy came to the hospital to swab his cheek and officially join the registry! We are so proud of him and beyond grateful that he chose to support something so deeply personal and life changing for our family.
Josie had such a great appointment! Her blood work looks amazing, and her immune system is doing its job and getting stronger every day. She received four more childhood vaccines, including her MMR vaccine!! We were so excited to be able to get her MMR vaccine 7 months earlier than typically scheduled after transplant! Several different teams of doctors have been running and looking at the extensive immune system panels for months to ensure her body was truly ready and healthy enough to receive it early. With every vaccine, it feels like giant weights lift off my shoulders.
We’re still working on bringing her blood pressure down and figuring out the path to take to manage some severe allergies she’s developed since transplant. She’s also had a few skin issues we’ve been keeping an eye on since December. Thankfully, they’ve improved with medicated creams, but there are still a few stubborn spots that have her team a little stumped. We’ll see dermatology next month and hope to get some answers!

We owe everything to this incredible woman! She is absolutely brilliant!!!! We have never met someone more passionate about their work than her! She pours so much into learning, researching, and helping others!

I will never forget the first time I spoke with her on the phone after feeling completely hopeless about Josie's aplastic anemia diagnosis. Her cheerful voice and expertise brought me more peace than I had felt in months! Not only did she get Josie into Texas Children's incredibly fast, but she also provided us with a ton of information and a deeper understanding of this rare disease. She went above and beyond, even giving us her personal cell phone number so we could reach out with any questions.

We are so thankful for her dedication in wanting to learn more, she was able to expedite the transplant study for aplastic anemia to come to Texas Children’s for Josie to be a part of, allowing for more research and understanding of this disease. We absolutely love her and she will always be referred to as our fairy godmother!

Happy rare disease day, Josie!!!!!!! You are makingg a difference in this world!!!

Severe Aplastic Anemia is an incredibly rare blood disease, affecting only 2 people per million each year. For nearly 2 years, it has consumed our every thought, every action, and every emotion. What you see on social media is just a grain of sand in what we have actually experienced. The reality of this journey is so much heavier, so much harder, and so much more than anything we could ever imagine!

Unfortunately, rare diseases like this often don’t get the research they desperately need because they are so uncommon, there just isn’t enough data. That’s why Josie’s journey is more than just her fight!! She is helping researchers gain the information they need to better understand this disease! We are incredibly thankful for Texas Children’s Hospital and their commitment to learn more about Severe Aplastic Anemia! They worked hard to expedite a study that Josie was eligible for so she could be a part of it and hopefully help and improve care for future patients! This study will follow her for the next five years, gathering data, collecting extra samples, and monitoring her progress so they can learn more about this disease!

We have signed countless consent forms along her journey in hopes it will help another person, even if it’s just one!! During her bone marrow biopsies, we’ve agreed to let them take extra samples for study! When she had her central line placed, we said yes to a study needing the removed tissue to study to help researchers learn more! And that’s just a few!

Josie is amazing!! We pray her fight will help change the life of future patients!! We pray her battle will lead to more answers and the best treatment options! Josie’s fight is making a difference, not just for herself, but for countless others who will come after her!!! And at just 4 years old, she is already leaving a lasting impact on the world! We are so incredibly proud of her strength, her bravery, and her resilience!