Sunday, January 31, 2010

Day 7- And So The Journey Begins...

From Sara:
Ok so its time to begin the journey. We are starting to get ready for our first trip to St. Jude. Reading the St. Jude web site for the list of things to bring, making sure the laundry is done, making sure that Kaite is packed to go stay with Leslie and Eric for an undetermine​d amount of time, making sure Jacob and I have what we need to go for an undetermine​d amount of time(Really thinking I may wait to talk to the Travel Office at St. Jude before we start packing.), paperwork, medical information​, phone numbers, and everything else. Wow its really a lot to take in and pretty overwhelmin​g. I took Jacob to get some slippers and new socks, the boy is really rough on socks, HAHAHA. Well just wanted to let everyone know what is going on with us right now. I will post when we know the details of our trip tomorrow. Sounds like we have our own travel guide, HAHAHA sure wish it was to Cancun or something. : )
Much Love.

Saturday, January 30, 2010

Day 6- Snow Day

From Jacob:
Wow! The snow is cold but we are having a great time sliding down the hill. We were being pulled around the hill by my Uncle Eric. Coffee is good on a cold day with your family. Last night we were out of power, but we lit some candles and we played a boardgame.

Friday, January 29, 2010

Day 5- Yay!! St. Jude Finally Called

Just heard from St. Jude. We will start appointment​s and tests on Thursday. Sounds like we will be there for several days. Will post more later!

Now to the friends and family of Jacob's mom, Sara. Sara has started her own blog on blogger. She needed a place to vent in a grown up fashion! What she is going through is what we as parents hope to never be faced with. Be aware that her blog may contain adult language and some intense thoughts and feelings, so be cautious if you or your children are going to follow it! Follow at Your Own Risk- LOL!! Just click the link on the right that says Jacob's Mommie!

Thursday, January 28, 2010

Day 4- Another Day of Waiting

From Jacob:
Another day of waiting till I find out my appointment to see the doctor at St Jude. I am tired all the time and it is annoying and im about to fall asleep in my class. It is really annoying. I hope that we go to school tomorrow because I have archery practice and if we dont, I want to go hang out with my Uncle Eric. Since we moved to Lawrencebur​g, Uncle Eric and Aunt Leslie have been supporting us and I just want to Thank them so much.

**I need pictures people!! If you have any fun or silly pictures of Jacob or just your favorite, please email them to! I am working on some things and any photos would be greatly appreciated!**

Wednesday, January 27, 2010

Day 3- Still No Word Yet

We are still waiting to hear from St. Jude to find out what the next step is! We are already starting to throw around fundraising ideas and maybe look into getting some Team Jacob wristbands! Everyone seems to love those wristbands. We are going to donate a portion of all fundraising proceeds to St. Jude, but we have to do some paperwork to get their approval. The rest of course will go to Jacob, his mom, and sister to help with travel expenses, any bills incurred from treatment, and day to day needs of the family. Anyone that has any ideas or is interested in helping out with fundraisers, please contact me @ or leave a comment with your idea or information!!

Tuesday, January 26, 2010

Day 2- News from the Dr. Atiyah

Just heard from Dr. Atyiah, they have assigned Jacob a Dr. Farbia Navid at St. Jude in Memphis. Jacobs chart was faxed and sent UPS with a copy of the cd of Jacobs MRI. They said that we will be hearing from Dr. Navid this week. Now we wait, at least there is only 3 days left in this week.

From Jacob:
I am feeling good with all the support not only by my family, but my friends and teachers. Today my mom told me about my doctor at St. Jude and I think we are lucky to have a very experienced doctor. If my mom likes her, I will too.
Thanks Everyone for the Great Support

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