My name is Christina, and I have desmoid-type fibromatosis.
Don’t know what that is? Most people don’t! Let me break it down for you. DTF is a rare condition that impacts 2-4 people in 1 million each year. As one of my doctors put it, I’m “the rarest of the rare.” So rare in fact that I like to call myself the unicorn of cancer patients! Some people consider it cancer, some don’t. (In fact, even my team of doctors disagrees on that point.) The bottom line is that it’s really important that DTF is treated just like cancer – specifically, sarcoma. My desmoid is located within my chest wall, behind my right clavicle.
Bottom line, I’m 28 and my life is not going to look typical anymore. (Let’s be real, I’ve been typical before, so why start now?)
You may have stumbled on this page because you know me or my family, heard about my story, or perhaps you yourself are a Desmoid Tumor patient. This blog will document my recent diagnosis, updates on my treatment, and my continued adventures. Please keep in mind that Desmoid Tumors are rare and much about them is still a mystery. My experience is going to be different from the next patient’s.
Regardless of how you landed on this page, I invite you to reach out and say hello! If you’re a Desmoid patient, I want you to know you’re not alone. I’ve found comfort and advice in Facebook groups and want to offer my own resource. You’re welcome to contact me at any time by using the “Contact Me” link above.
Thanks again for visiting, and I’ll be updating soon!
12 thoughts on “Hello & Welcome!”
Thank you for sharing your story. You are all in my prayers. Be assured of that throughout your journey. ♡
Thank you so much, Maria! The prayers mean so much.
I’m so sorry to hear of this struggle that lies ahead for you, but I very fondly remember the fighter that you were in high school and know that you will conquer this with that same drive and determination! We live in the best location for medical care possible, so I have faith that you’re in the very best hands! I look forward to reading your blog and hearing your many successes ahead! You will be in my prayers daily and I sincerely wish you all the best in your battle to fight this!
Thank you so much, Mrs. Davis! If I can get through Algebra II, I can do anything! 😂 I’m grateful for your help then and your support and prayers now. Thank you!
Thanks for sharing your story. You’re an amazing young lady. Please know that you are in my daily thoughts and prayers.
Thank you so much, Dr. Melleby! I truly appreciate your support. The thoughts and prayers are returned as well.
You are in my thoughts and prayers and I will be sending you daily positive vibes. Thank you for sharing your story. I know your journey won’t be easy but, I’m sure you will do amazing.
Thank you so much, Holly! I appreciate all the good thoughts and positive vibes 🙂
What a wonderful job you did explaining everything and even suggesting some do’s and dont’s ! Love to hear you so in control . The entire Young family is sending love 💕 hugs and heartfelt prayers .
Love and hugs ,
Wishing you the best on this journey that lies ahead and please know that we will be thinking of you every step of the way !
Hi Christina, you are in our thoughts and prayers. Talkedto your dad yesterday and he directed me to your blog. Thank you for sharing your journey. Really appreciate the do’s and dont’s.
Hello Christina, beautiful, courageous and Mighty Woman of God! Your Faith and the Love of Jesus are unmatched by anyone else I know.
Keeping you in our prayers. Craig and I love you more than you know❤️. We are only a phone call away.
Craig and Jacqui McEady
Something To Make You Laugh:
My puppy 🐶 Maximus loves the snow. He weighs 8 pounds. He is outside spinning around like a top in the snow. He then stops abruptly and takes small bites of the snow and starts all over again. He is 😂 hilarious!
Give your sweet puppies a kiss for me and Craig.
Love you. 😘
Christina- I just heard about your diagnosis! We just spent New Years Eve with your parents and came back for dessert to hang with you. I’m reaching out to your mom today. You are an amazing woman and warrior… I could tell that the night we met. I scrolled to the bottom to start at the beginning and saw you referencing Kris Carr- she is awesome- a true cancer “thriver” … will be keeping you in my thoughts and prayers Sending our positivity and virtual hugs – Mariellen and Paul