Day 26- Great News!!

Quick Update!

Pathology informed us yesterday that Jacob does NOT have CANCER!! YAY!. We are waiting on results to find out exactly what it is. We are at home and Jacob attended school today and will be at Archery practice this afternoon. Feels so good to get back to normal. I will post an update when we have the completed pathology report.

Thank you everyone for your prayers! I truely believe that they made a difference in Jacobs health. Because 3 weeks ago even the doctors were concerned, and now he is going to be okay~!!

Peace, Love, and Prayer!
Sara

Day 20- Recovering Slowly

We are back in our room at the Grizzly House, we finally got released at 10:15pm. Because we were going to be so close they let us go, Jacob really needed some quite time and a good nights sleep.

The surgeon came in a took the drain tube out around 4pm. Said that he is looking good. He can shower but needs to take it easy for a few days.
Monday we have to see the primary physician and Wednesday we have various appointments and Thursday we see the surgeon again for followup and pathology results(if we dont already have them Monday).

I just got the room cleaned up and got Jacob in the bed resting, he did ask for pain medicine 13 hours since the last dose. I guess moving around really bothers him, he is pretty stiff.

Well Im going to try and get some rest now.
Goodnight All!

Peace, Love, and Prayer!
Sara

Day 19- Surgery Update

Ok update on surgery:
It went well, he has 3-4 small incisions that I can tell, he is pretty swollen. It took them 3 hours. He has a drain coming from his face. They have given him Percocet, Dilaudid, and oxycodone for pain. We see the surgeon next week and expect to have results then.

Us:
We are doing well.(Kaite and I got food poisoning from the cafe yesterday and finally we are better. Who would have thought you could get food poisoning from eating at the hospital?) ​Jacob is really irritated with the doctors and nurses and other staff bothering him. He is not really resting well. He was awake every hour during the night, up for a bit at 2am and up for good at 5am. He went 22 hours with no pain medicine and we finally got him to tell us he needed some, not sure why he wont ask for it, I guess he is trying to be tough or he doesn't like feeling drugged. The primary doctor came in a bit ago to check on him, she said we will see her on Monday and we could have results by then, possibly. She was not sure how long the surgeons wanted the drain in, we should see one of them soon today.

Jacob received a netbook from the Commercial Appeal so we can keep up with this site and he can talk to people. He is very greatful!!!! He also received a Gameboy Game from his Mimi and a shirt and hat from Ms. Holt. He wants to send special thanks to everyone.

I want to thank everyone for their continued support and special Thanks to My sister Rachel for taking care of Kaite while she was feeling under the weather, and for taking care of my 4 legged child Duke, and for taking care of us while we are here. I want to send special Thanks to my Uncle John for coming to check on us and taking care of Jacob. I also want to send a big thank you to my sister Leslie and her family for taking care of my little furry baby Bella(I hope she stops crying, soon I know she misses her cuddle buddy Duke.)

Well thats all for now, if I missed anyone Im sorry!
I will post update when we hear from the surgeon.

Peace, Love, Prayer!
Sara

Day 18- Surgery Day

From Sara:
Jacob is in surgery, been there for 1 1/2 hours, hopefully coming out soon. He seemed to be full of anxiety, but me too.
Will post update after I surgery.

Day 17- More Appointments and Pre-Op

Today was visits with the pre-op people, blood work, and sent to see a Dermatologi​st regarding the Hemangioma on Jacobs back and some moles on his back as well. Tomorrow when they do the open biopsy they will be doing biopsies on 4 moles on his back. Well off to get the room packed as we will be spending the night at the hospital instead of Grizzly House tomorrow night, and we have to be there at 6:45am.....​

More later.....
Peace, Love, and Prayers!
Sara

Day 16- Travel Day

Sara, Jacob, and Kaite have made it safely back to Memphis to prepare for Thursday's surgery. It has been snowing/sleeting/raining for a few days, so I am glad that they made it with no problems. I will be placing the order for the bracelets on Friday. Let me know if you have any questions or concerns.
Thanks,
Leslie

Day 15- Time to Get Ready to Go...Again!

Well, we are getting ready to head out again tomorrow for St. Jude. We have a full day of appointment​s and blood tests set for Wednesday. Thursday is when they do the open biopsy. Lets Pray that everything goes well and the doctor has a good nights sleep and takes his time to prevent paralyzing Jacob's face during surgery. Thank you everyone for your continued support!!

Peace, Love and Prayer!
Sara

Day 14- Superbowl Sunday

No new updates today! Just going to eat some wings, spend some time with family, watch the superbowl of course!!!

Day 13- Quick Update- Test Results

Quick update!!! Just got a call from Jacob's Primary Physician at St. Jude, Dr. Holly Spraker, she says the PET Scan showed nothing else. So it seems to be centralized to his face and neck at this point. GOOD NEWS!!!! So plan for next week is we return to Memphis Tuesday afternoon for appointment​s Wednesday and Open Biopsy Thursday.
Thank you everyone for your continued support!!

Peace, Love, and Prayers!!
Sara

Day 12- Still doing Appointments at St. Jude

Jacob is still in Memphis today. He was seeing the doctors and getting more details about the surgery he is going to undergo on Thursday of next week. He is was having his PET scan to determine if there are any other areas of concern in his body. We are praying for a positive outcome on this test! Sara and Jacob should be headed back sometime in the morning. I know that Kaite (Jacob's sister) is super excited that they are coming back. She misses her brother and her mommy and wanted them to be here for her Valentine's Dance tomorrow night! I know that God is working in their lives and hoding Jacob safely in his hands as this journey progresses. Please continue to pray for Jacob and his family. All prayers and support are appreciated. Please remember that you can preorder your support wristband on the right side of the page. Our goal is 30 preorders! So show your support for Jacob and raise awareness about ACC by getting a wristband. They are $3.00 plus s & h. A portion of the proceeds will be donated directly to St. Jude Children's Research Hospital in Jacob's name.
Thanks,
Leslie

Day 11- Lots of New Information from St. Jude Appointments

Today was completely long, hectic, and totally overwhelmin​g. Met a lot of amazing doctors and special people that will be joining us on Jacob's Journey. Today we had Assessment, Labs, New Patient Intake, New Patient Screening, met the ENT Surgeon, Child Life Therapist, met with people in the Surgery Clinic, and the Social Worker. Now we are at the Memphis Grizzlies House and its great!!!! To​morrow they have added more testing and appointment​s. Jacob will be having a PET Scan tomorrow so they can find out if there are anymore issues anywhere.

The ENT, Dr. Sandeep Samant, looked over Jacob's scans(CT and MRI) and informed us that there is bilateral lymph nodes in his neck that are of concern in addition to the masses in his face and neck. So Monday, latest, we will know if there is any more areas in Jacob's body that are of concern. And as of right now on Wednesday we will return to St. Jude for more tests and visits with the doctors before they do an open biopsy on Jacob at 9am on Thursday. Dr. Samant seems concerned and says the only way to get a definite answer is to go in a take the lymph node and a piece of the mass that is in Jacob's jaw area. At this time he will not be removing the Parotid gland(which is the mass that is measuring 9.5mm and the biggest concern.) They tell us that we should have simple results on Friday afternoon. They will do deep testing if they see anything in either specimen that is unidentifia​ble.

So for now, we are in Memphis until Saturday morning, then home to help Kaite get ready for her Valentines Dance and Jacob ready for his. Then we head back to Memphis on Tuesday for the schedule next week.

Will post more as I know more.

Peace, Love, and Prayer!!
Sara

Day 10- Headed to the Hospital

Just wanted to update everyone and let them know that Sara and Jacob made it to Memphis safely. Jacob has like 9 or 10 appointments tomorrow and Friday. Sara is going to keep me updated as she meets with the doctors. Kaite and their kitty kat Bella are safe and sound here at my house! Please just continue to pray for Jacob and the family. This is a very difficult time and our concerns are for what we still do not know about Jacob's condition. Also, please say a prayer for the doctors and nurses to be on their game as they begin this process with Jacob. Pray for their strong medical minds, careful eyes, and gentle hands as they determine the course of treatment that will be best for Jacob. As a family, we are definitely learning that God has a plan and that everything really does happen for a reason. Thank you to everyone for your love, kindness, and support!

Also, just wanted to let everyone know that if you have any questions or want specific info or updates, please contact me or my other sister Rachel. If you need our cell numbers, please email me teamjacobacc@yahoo.com. Sara is really not able to answer calls right now and it is very difficult for her to have to go over everything again and again. She needs to focus on Jacob right now, so Rachel and I will be more than happy to answer any questions that you might have or pass on any messages that you have. Also, commenting on the blog is a great way to share your thoughts and support!

Peace, Love, & Prayers,
Leslie
(for Sara, Kaite, & Jacob)

Day 9- Getting It All Together

From Sara:
As I go through the house looking for paperwork and phone numbers of everyone I get an automated appointment confirmatio​n phone call...9 appointment​s Thursday!! WOW!! I thought that automated lady would never stop....HAH​AHA
8am(she said that twice so is there 2 appointment​s at 8 or is something wrong, if so..thats 10!!)8:30am​, 10am, 11am, 1pm,1:30pm,​3pm,4pm, 5:15pm. Thats just for Thursday. As of right now its only one for Friday, but we were told to be prepared to stay. Also, I am not sure about access to a computer while I am there, I think they have a media room. I will check it out when I get there. If I find a place I will surely send an update.
Thank you everyone and keep praying!

Peace, Love, and Prayer,
Sara

Day 8- Appointment Info

From Sara:
The appointment​s start Thursday 8am, several throughout the day with the last being at 5:15pm and finish up(as we know right now) Friday at 9am. They told me at any point there may be appointments added.


We are getting closer to ordering wristbands. I am working with a company now. If you are interested in purchasing one, they will be $3 plus shipping and handling. Please email me at teamjacobacc@yahoo.com if you have any questions or if you would like to sell them at your school or workplace! All help in raising money for Jacob and raising awareness about Adenoid Cystic Carcinoma is greatly appreciated!
Thanks,
Leslie

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.
Sara

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.

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!
Thanks,
Leslie

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 teamjacobacc@yahoo.com! I am working on some things and any photos would be greatly appreciated!**
Thanks,
Leslie

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 @ teamjacobacc@yahoo.com or leave a comment with your idea or information!!
Thanks,
Leslie

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

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