DANIELLE. HER SON GRAYSON, FAP AND DESMOID TUMORS.

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 problems I was having and was told by all that I was too young to have anything wrong and that my problem was simply internal hemorrhoids. As the years went on, nothing improved but it didn’t get worse either, other than having several ovarian cysts and fibroid rumors in my uterus. 

My husband and I were blessed with our son on 5/24/10. I’ll never forget the first time he was placed in my arms. We had a perfect child. 6 months passed and Grayson had developed a tumor at the base of his skull. It was removed when he was 7 months old. Pathology came back as benign, nothing to worry about. We were warned that this could grow back but was unlikely. Three months later our lives changed and our world was turned upside down forever. I was sick. My family doctor found an adrenal tumor on my left adrenal gland. I was sent to a surgeon and was told that I would need lung X-rays and a colonoscopy to determine what we were dealing with. My lungs were clear, my colon was not. During the colonoscopy, the surgeon found thousands of precancerous polyps carpeting my colon and some of my rectum…it must be removed. It was determined these were adenomatous polyps that had more than likely been growing since I was a young teenager. I was angry, bitter and broken. I kept asking why this couldn’t have been found sooner. Them I snapped back to reality and my husband and I agreed to the surgery, after all we had Grayson and he needed his mommy. My colon, rectum and adrenal gland and tumor were all removed on 5/23/11. I spent 2 weeks in ICU and another 10 days on the floor.  We thought the hard part was over and life would continue on as “normal” – minus a few innards. Chloe (my illeostomy) was a part of us now and we learned to deal with her temperamental ways.

In November 2011, my doctor found 2 rumors on my thyroid and diagnosed me with Graves disease. Not having researched much about FAP/GS we left it at that. Together, my husband and I decided to have them removed (both tumors and thyroid). Another week stay in the hospital due to minor complications. Aside from this small set back and another organ gone, life returned to normal a week later.

In December 2012, we noticed Grayson’s tumor was growing back. So we called the surgeon. We were sent for multiple ultrasounds, CT’s and MRI’s to determine what we were dealing with. After the second round of tests, his surgeon came into the recovery room. We knew it wasn’t good but certainly weren’t thinking he had FAP. After all, my surgeon had told us the likelihood of Grayson having this was very slim.  However, when his surgeon sent us directly to St. Jude’s we feared the worst. Everything I had ever associated with St. Jude’s was cancer. My world was once again shattering at my feet…MY baby was sick. On March 5, 2013, Grayson underwent his second resection of this tumor. A few days went by and we finally got the call…not from the nurse but from the surgeon himself. Again, I knew this wasn’t good. He told me that the pathology came back as a fibromatosis (desmoid tumor) and that it was also growing down around his corroded artery and might need to undergo chemo at some point to shrink it enough to safely remove it. The good news was that the tumor was benign.  The bad news was that we could expect it to grow back again as they couldn’t remove all of it safely right now. My husband and I went to pieces. I cried and my heart broke knowing that Grayson had inherited this from me. I remember weeping over a pot of chili while my husband cried silently in the living room. I didn’t know how we were going to make it or what to do for our son. I just knew we weren’t going to sit by and let this beast win.

I was up all night pondering and researching. And ten like a ton of bricks it hit me and the idea for Capes for Grayson was born. Grayson is very much into superheroes and capes. In fact, before his surgery he had asked me to make him a cape to wear to help him be strong. He said “nothing will hurt me when I wear my cape”. He also asked me to make one for his daddy. When I asked him why, he simply replied “To help him be strong too mommy”.  I was so touched. What started out as an idea to help Grayson be brave when he goes to have tests and surgeries spawned into something so much more. The idea was to let people order capes with superhero names on them and send us a picture back so I could make Grayson a hospital scrapbook to take with him when he had tests and surgeries so he could remember how many people were thinking about him and being superheroes for him. What I thought would be a small venture of maybe 10-20 capes turne into over 400 capes and still rising to this day.

I spend my days researching FAP/GS and raising awareness and support through Capes for Grayson. We choose to look at the positives and blessings and make the occasional tacky joke. As a family we chose to laugh about it instead of cry. I will spend the rest of my life advocating and raising awareness for my son and other people with FAP in hopes that tomorrow will bring us one day and one step closer to a cure.

9 Comments

  1. Loved your story. My husband too has FAP and it has been a fight everyday since he was diagnosed October 8, 2012. I pray for everyone who has this horrible disease and my heart breaks especially for the children. They have no clue what lies on the path before them and the scary part is, we don’t know either. Just hope and pray…for comfort, for peace and for a cure. Love the super hero cape idea. Because of you and your son’s idea, children all over can find a little comfort knowing that their cape will give them strength. God Bless you and your little boy. Prayers and hugs for all <3

    Reply
    • Amy, I’m so sorry your family is having to go through this. Thank you for reading our story. Your husband and family will be in our thoughts and prayers!

      Reply
  2. You know our family loves you and we feel as we have walked this journey with you as our story is very similar. Love you all.

    Reply
    • Shinar, we love your family too and continue to pray for your family!

      Reply
  3. Thank you so much Danielle for sharing you heart wrenching story! Our family has lived with FAP for almost 40 years now. If you would ever like to talk via email or phone, please let me know. I don’t do Facebook. God’s blessings to you and your family! Hugs from Todd’s mom, Jolane Rankin.

    Reply
    • Holme,thank you so much for your kind words. I would love to talk sometime. Please feel free to email me at Capesforgrayson@yahoo.com. Your family is so lucky to hve a wonderful caregiver such as yourself!

      Reply
      • Jolane not Holmes. Autocorrect gets me all the time. I’m so sorry for that.

        Reply
        • Ha Danielle, I scratched my head on that for a moment. Then I figured it was phone related :)

          Reply
  4. Touched like the rest! My heart goes out to all! I also have fap, and was the first one out of my family to find out what fap was. There are a few good closed groups on face book., that help for knowledge and support. praying for all and God bless you all!

    Reply

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