Hi, my name is Annabelle. I am 4 and half years old and I have Aggressive Fibromatosis, also known as Desmoid Tumor, in my right forearm. My mom tells me that I have had my tumor since I was born, but since I can’t remember back then I’ll have to take her word. Mommy was very sick while I was in her belly and she had to have me early. I like doing things early, being born, rolling, crawling, walking, talking and even being sassy.
When I was first born the doctors told mom and dad that my lump wasn’t anything serious, probably just fat or a hematoma (collection of blood that resulted from my traumatic birth).
So for my first year I just got to grow and only see the doctor when a normal baby would. But when I turned one and my lump was bigger instead of having gone away like the doctors said it would we traveled to Peoria, IL to see new doctors. I had my first MRI right after I turned one, I didn’t like not being able to eat for so long and having to go to sleep was very scary, especially since they didn’t let mommy or daddy come with me. After my MRI I went and saw LOTS and LOTS of surgeons, all of them told mommy and daddy that I was too little they wouldn’t want to do anything with my arm because it made them too nervous. Each time the old surgeon would refer us to a new surgeon, finally a surgeon said to us that he thought the tumor was just fat and would be easily removed.
In February 2009 I had my first surgery, I REALLY did not like that! The surgeon said that the surgery would last an hour and a half to two hours and when after 30 minutes the status screen said I was out of surgery mommy knew something was wrong. The doctor came in and told mommy and daddy that he was unable to remove the mass and that he was unsure what it was but that I had some aggressive form of cancer.
Mommy says she cried for 4 days until they called and said that it was just some sort of abnormal fat cells. The doc also said that the swelling from the surgery should go down by 6 months and the tumor should be a bit smaller.
When we hit the 6-month point, my tumor was about 3 times bigger and hurt me a lot. So we went back and the surgeon wanted to remove all of the soft tissue in my forearm. Mommy and Daddy said absolutely not and got me an appointment at Cincinnati Children’s hospital with one of the best surgeons in the country/world.
He ordered another MRI (this was August 2010) and said he would like to see us again in 3 months and that he thought I should be seen by an oncologist, too. We met the oncologist and a genetic team in September and scheduled a follow up MRI for December with a PET scan. In December we traveled from our home in Illinois to Cincinnati for the 3rd time.
I really did not like the sedation for the two scans, but I did get to go to a fun museum and swim in the hotel pool. When the oncologist saw the PET scan results he said that I had some “hot spots” I have no idea what that means, but mommy says that it means those are the most active parts of my tumor. So we stayed in Ohio for another 3 days so that the surgeon could do a surgical biopsy of these hot spots. Right after I was released from post op we drove the 6 hours home to wait for my results.
On December 15th 2010 I received my Aggressive Fibromatosis (Desmoid Tumor) diagnosis and was given two options of treatment, radical surgery (mommy says that they were going to do surgery that would cut off my arm!) or a year of chemotherapy. Since I can still use my arm (mostly) mommy and daddy thought chemo was the best option. In January 2011 I started one year of methotrexate and vinblastine after having a port surgically implanted.
During my year of chemo I was sick a lot and even had to get chemo on my 3rd birthday, I threw up my party cupcake all over my new dress up dress the hospital gave me. I finished chemo 4 days before Christmas and even got my port out too! Then about 3 months ago in January 2013 I had surgery to lengthen the tendons in my wrist so I can use my arm better and unbend my wrist again.
The surgery was successful and I have been in physical and occupational therapy for a few months now making great improvements. I am now about a year and a half post chemo and so far my tumor has remained stable (the chemo made it stop growing).
I have an MRI on Monday June 3rd to check for growth, I have recently been having some pain again, Mommy and Daddy pray every day that it is just pain from using the muscles that haven’t been in so long, but if my tumor is growing again I will fight because I am a survivor and fighting this monster is what I do best!
P.S. Mommy, Daddy and my brother say they are SO proud of me. 🙂