Monday, January 25, 2010

Day 1- Diagnosis: Adenoid Cystic Carcinoma

Hello! My name is Leslie. I am Jacob's aunt and I started this blog for many reasons. First, I want our family and friends to be able to follow Jacob's story and get daily updates on his progress. Second, I want to put his journey out there for information and awareness regarding Adenoid Cystic Carcinoma. Lastly, to allow Jacob, his sister Kaite, and his mom Sara to have a place to share their thoughts and feelings. I am going to be the administrator of this blog and help keep everyone up to date on fundraising projects and I may even blog occasionally. Jacob is a very special child and he and his family need lots of support during this battle against ACC! So with that said...lets get started!

From Jacob:
Hello. My name is Jacob. I am 14 years old. Today January 25, 2010, I was diagnosed with Adenoid Cystic Carcinoma. Tomorrow, the doctor Dr. Rajah Atyiah, will call St. Jude in Memphis and find out when we go to see the specialist there and find out my treatment plan.

Background Story
From birth I have had many of surgeries and health battles. My first being a Pyloric Stenosis repair at Vanderbilt.
Then I was diagnosed with a Hemangioma on my back. They used Steriod Treatment first, then Laser Surgery to try and shrink it. Then after 3 years of no success and the Hemangioma growing larger the doctors decided to remove it and do skin graphs from the lower part of my back.
When I was 7 I had eye surgery, at LeBonheur in Memphis, to correct a lazy eye. Which did work very well and I only need reading glasses.
The​n when I was 8 the Hemangioma started coming back and eventually grew through the skin graphs and I was in a lot of pain all of the time. Eventually, after seeing a lot of doctors in Memphis, in December 2004 we were sent to Arkansas Childrens Hospital, where I was diagnosed with a Kaposiform Hemangiolio​ma, or KHE. The treatment was to use low dose Chemotherap​y to shrink the Hemangioma. At the time my mom was being transferred to Florida for her job. When we got to Florida my mom found a doctor that got us involved with the people at All Childrens Hospital. They talked with the people at Arkansas Childrens Hospital and followed the treatment plan they requested. I had a Meta-Port put in my upper left chest and had weekly doses of Vinchristin​e Chemotherap​y for 1 year.
I lost my hair and got very depressed, my mom and sister made me get up and kept me busy with other things to free my mind. I had to go to physical therapy one time a week to get the strength back in my legs from the chemo. It was a very tough time. But I did get to go to a Tampa Bay Bucs Football game and a lot of Tampa Bay Rays Baseball games and a lot of Tampa Bay Lightning hockey games, so there was some fun times and things that made me happy. I also got a shopping spree at Walmart and got to go to dinner with my sponsor and my favorite social worker. We also got to ride in a limo, it was the coolest.
So now, I have cancer and a whole lot of support from family and friends. I am putting my life in God's hands completely. He will keep me safe and my family safe too.

From Sara, Jacob, & Kaite

This is day 1. We have no clue where this is going to lead and what the treatment plan is. Its all up to God. We just request prayers and love from everyone while we go through this.

Thank you everyone,

Love Sara, Jacob & Kaite

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