MOMS CORNER

You’ll find my own mother’s story below with several others. With three children (including me) who all have both FAP and desmoid tumors and a husband who had FAP and colon cancer, which took him when we were very young, my mother has had a full range of caregiver experiences. Her devotion and strength is what has held our family and each of her kids individually together all of these years and this section is in her honor.

This section is for all of the devoted Caregivers: family members, partners, friends and other loved ones who do so much to take care of us patients. We could not possibly get through all that we go through without you. Too often Caregivers don’t receive the recognition they deserve as being right in the center of the fight right along with the survivors, and we acknowledge how impacted you are in dealing with illness on a daily basis, just like us. We hope that having Caregivers share their stories and the unique struggles and issues that affect the loved ones dealing with these catastrophic illnesses will help others who have had the same, or similar, experiences. Yours are stories of survivorship just as much as ours and to all of you, we say a very heartfelt “thank you”.

If you are, or were, a Caregiver of somebody with colon cancer, FAP or desmoid tumors and would like to share your story here, please send us a note at yo@destinationxride.org.

MY FAMILY & FAP — BY MY MOM.

MY FAMILY & FAP  -By Mom. TED'S FAP DIAGNOSIS & INITIAL SURGERIES When my youngest child was about two months old, my husband Ted was diagnosed with Familial Adenomatous Polyposis (FAP). He was having problems with diarrhea and crampy pain in his abdomen for a couple...

JESSICA. LOVE, FAITH & FAP.

MOMMYHOOD Since I was only knee high, I've dreamt of being a mom. I always hear people say they were blessed with their children. While I absolutely agree that my three beautiful kids are blessings in my life, I made the conscious decision to bring them into this...

INA. HER DAUGHTER JENNY & LIVING THROUGH FAP.

My name is Ina. I’m now 63, and my journey with Familial Adenomatous Polyposis[FAP] (little did I know) began when I was a mere child. This journey started with very little knowledge or understanding and over the course of my life I’ve learned more than I ever wished...

DAWN. FAMILY, FAITH & FAP.

I will never forget October 16, 2011 for as long as I live. I had been ill for 2 years, being passed around from one doctor to another, test after test, and finally was approved for a colonoscopy. I was only 40 at the time so insurance didn’t feel it was necessary. I...

MICHELLE. HER FAMILY’S FAP STORY. A GIFT.

A DISEASE A GIFT? Our journey began back in 1994 and we had only been married for 3 years. My husband Michael's youngest sister was not feeling well and the doctors were trying to figure out through a series of different tests what was wrong. They concluded that she...

CHRISTINA. FAP, DESMOID TUMORS AND HER TWO BOYS.

I found out that I had FAP when I was 7 months pregnant with my first child. I put off scans and surgery for a few years.  I became a great procrastinator. But just because I ignored my disease, didn't mean my disease ignored me. Fast forward 11 years... a lot has...

JUDY. ALLISON, MASON AND FAP.

I'm Judy and this is my family’s FAP story. I was with Kyle for 20 years, married for 16.  We had 2 healthy children, a daughter, Allison born in December 1993, and a son, Mason, born in March 1995.  By the time the kids were in elementary school, they each had some...

DANIELLE. HER SON GRAYSON, FAP AND DESMOID TUMORS.

My family's journey with FAP began when I was 2 years old, I had several sebaceous cysts removed from my scalp. I didn't have any problems as a young child but as I grew up I started having trouble with my GI tract. I went to 8 different doctors and told them the...

KATHY. HER SON AND HIS DESMOID TUMOR.

It started out as a normal day on a late sunday in August. my family was over swimming. My sister n law noticed Max's jaw area was a little swollen. So I did what any other mother does these days and ran to google to see what I could find out. Well it sounded like...

WENDY. HER FAMILY AND FAP.

OUR F.A.P. JOURNEY 1991 is when our journey began. I was 19, my husband Gerard was 21 and we were one week from our wedding day. A few months prior to this Gerard began to bleed rectally which was passed off as hemorrhoids. We went to the ER, saw his primary care...