WELCOME

“I am a mother, wife,
chronic pain warrior,
rare disease advocate,
blogger and business
owner with a fierce
passion to leave my
mark”

BLOG

My blog started as a simple way to express myself and manage the daily struggles with my sons rare disease, parenthood, and being a woman and mother. Little did I know it would become so much more then my little diary…

THE THOMAS FAMILY

At the core of everything I do is my family. They are my why and my biggest motivation. We are a family who constantly chooses to commit to each other everyday, whether life is hard, easy, beautiful, or ugly. We make a conscious decision to weather the storm alongside each other. We don’t have all the answers – just our experiences, which we hope can benefit and impact other people who are walking in similar shoes.

PODCAST

Our family had the pleasure of interviewing over 20 BWS families from around the world to learn about their experiences and help get their story out. We called these our Because We’re Strong Segments. We have now turned those stories along with other chronic illness and invisible struggles into a podcast. Our podcast is a place for those who struggle silently to no longer do so. We want people to share their voice and their story in the hopes of creating change.

INTERVIEW: Kenzi Paquin & Cervical Cancer Because We Are Strong

Your listening experience is extremely important to us with that being said please forgive Kristine's audio track. We apologize and will continue to work to improve your overall experience. Thank you for helping us bridge the gap between rare diseases and the rest of the world._____________________________________________Meet Kenzi: I had a positive pap in 2016, got a biopsy and found out it was stage 1 cancer. I was told I had HPV 16 and that’s what had caused my cancer. I Had a colposcopy, got it lasered & was good to go. I was supposed to have semi annual paps but didn’t go. I had 5 babies (two after the first diagnosis) and got wrapped up in life and never made Pap smears a priority. I didn’t know it was important.. I didn’t go get a Pap after my last daughter was born.After four years of not getting a Pap smear, I went in in September 2020..i had a positive pap and dysplasia was found.they did a colposcopy and biopsy. Staged me at 3b. I did a leep procedure. I went through two rounds of chemo (Carboplatin and paclitaxel) and internal/external radiation. And they took me back very quick to get a total hysterectomy. The next pet scan showed two of my pelvic lymph nodes were being effected.So I had a second surgery.. I got para-aortic lymph nodes dissection. A week after that surgery I went to the hospital for pain and they found out I had an internal secondary hemorrhage. They did a surgery for packing and vault suturing. I also required a blood transfusion. (I’m anemic anyways) Following that I had surgery for a cuff tear that required a revision. After that I developed cuff cellulitis infection. I was hospitalized with Iv antibiotics. I got my last a pet scan in April 2021 and The surgeries were successful to get rid of the cancer. My scan was clear. I had to go in every 3 months for a check up scan (CT or PET) my husband got out of the military and we moved from California to Michigan to buy our first house. I set up my follow up appointment. It NEVER crossed my mind that the cancer could be back.. I was determined and had plans to live life cancer free. Due to my Covid symptoms they called me and read to me my results. I had a 5.6 cm tumor in my pelvic/abdominal wall cavity. Biopsy came back cancerous. I started chemo right away. They sent me to a surgeon. He took me back for my 6th surgery. Performed Debunking & small bowel resection. Tumor was removed en bloc, with 2 segments of small bowel. The surgeon anticipates 3-5 more surgeries. After that, I had went to the ER for breathing struggles and they had found a nodule on my left lung. I just got a biopsy recently and am waiting for my results. I also go talk to the surgeon next week to discuss more surgeries. In the meantime i have gotten Covid (for the second time) I’ve have had to wear a 24 hour heart rate monitor. I have severe vertigo and was passing out. After hitting my head numerous times, they Diagnosed me with post concussion syndrome. The dr found out why it was happening and diagnosed me with POTS..and I have a vitamin b 12, vitamin d, magnesium and potassium deficiency which I am taking medicine for now. I’m already anemic and have needed multiple blood infusions through the last couple years.I’m just happy and thankful to be at home right now with my family instead of living in the hospital._____________________________________The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.Support the show
  1. INTERVIEW: Kenzi Paquin & Cervical Cancer
  2. INTERVIEW: Lindsay
  3. INTERVIEW: Marie & R.A.R.E Advocates
  4. INTERVIEW: Amber
  5. INTERVIEW: Roxy Murray &

CONNECT

Let’s work together! Available for social media influencing & marketing.

FAVORITE ADVOCACY APPAREL

WHATEVER YOU ARE OWN.IT TEE

I love this shirt because I feel it can apply to so many people and their situations. Its bold and makes a statement!

SCRIPTED RARE. CROPPED CREW

I love this cropped crew neck because it raises awareness but also elevates your style. Its comfortable and looks great with leggings or my personal favorite – high waisted jeans

MOM WITH A MISSION FIERCE TEE

I often say that I am always on a mission when it comes to my children. This shirt is super cute and is my favorite print – camo!

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