Love for Lily!

New Medication

shlbrewster — Tue, 07 Feb 2012 15:04:21 +0000

Lily has started the Afinitor and has done well! She has had some issues with dry mouth but otherwise, she is happy and healthy and learning so much! We have so much hope and are so proud of her!!!

Jingle Bells!

shlbrewster — Wed, 14 Dec 2011 16:07:25 +0000

It’s almost Christmas time! We will be visiting our favorite family in only 1 week! We are so excited! Lily is doing great and we appreciate everyone’s donations! Thank you for giving and making this an exceptionally wonderful Christmas.

Bye Bye Lamictal!

shlbrewster — Mon, 05 Dec 2011 17:19:03 +0000

Last night was the FIRST night in TWO weeks that Lilliana has not vomited! Yay Lily! Thanks to super parents, Lily’s Lamictal (one of her seizure medications) has been stopped completely. Lily is feeling much better this morning!! Yipee! Great job Mommy and Daddy!

Medication Issues

shlbrewster — Mon, 05 Dec 2011 16:25:23 +0000

Lily’s physicians are trying to solve the mystery of what is causing Lily to vomit several times a day for the past 2 weeks. With Scott and Heather’s close watch, they have related the vomiting as a reaction to the Lamictal (seizure medication) she is taking. Unfortunately, the neurologist is also ruling out hydrocephalus (a very dangerous condition that is caused by brain swelling). Please pray for Lily today to feel better.

Miracle Drug

shlbrewster — Fri, 04 Nov 2011 21:56:46 +0000

Lilliana will begin taking a new drug called Afinitor in 2 weeks. We are hoping and praying this will be Lily’s family’s miracle drug. There is a possibility that this drug will shrink ALL of Lily’s brain tumors. However, there are several risks and side effects related to taking this drug. You can read more information on this drug at http://www.afinitor.com. Afinitor is the first and only FDA-approved therapy for patients who need treatment but aren’t candidates for curative surgery to remove their tumors. This is very exciting for Lily~! Please pray for a miracle!

P.S. We are 1/4 of the way of meeting our goal for Christmas to raise $800.00 to make the first payment on Lily a KidWalk~*! Thank you so much for your donations. We appreciate you and your loving hearts!

Operation Christmas

shlbrewster — Thu, 27 Oct 2011 21:37:16 +0000

This website is being built for the Brewster family. It is a Christmas surprise for them. They recently moved to Puyallup, WA (close to Seattle) to be close to a physician that specializes in Lily’s medical condition. Aaron, Brooklyn and I will be flying to Seattle for Christmas so that they don’t spend it alone. We can’t wait to see our dear friends that we miss so much! Our goal before December 22, 2011 is to raise at least $800.00 to make a payment on their daughter’s future kidwalk. It is very important to them for Lily to have this to aid in her process of learning to walk. Lily will be 3 years old in January and she can not crawl or walk. Her seizures have kept her from meeting these developmental milestones. However, she was able to “try out” the kidwalk while she lived in Tulsa. Therapy Source for Kids loaned the kidwalk to Lily for about a month. Due to the move, Lily had to give her kidwalk back. Please help us reach our goal of $800.00. If all our friends, family, and co-workers make even a small donation we believe we will reach this goal and give Lily the best Christmas present ever! Not only will she begin building muscles in her legs that will help her walk, her parents will just know they are loved and have a little more hope! Thank you so much for visiting! Please take a second to learn a little more about Lily’s disease at http://www.tsalliance.org

Hope for Change

shlbrewster — Thu, 27 Oct 2011 19:07:28 +0000

Lily has an appointment with the neurologist next Wednesday, November 2nd. Please pray for an accurate evaluation for the possible use of a new drug called Afinitor. Lily will also be evaluated to see if she is a candidate for brain surgery. Scott and Heather are hoping for the drug due to the many risks of surgery.

Lily’s Journey

shlbrewster — Wed, 19 Oct 2011 03:17:14 +0000

Please visit www.williamandheatherbrewster.blogspot.com to learn more about Lily and her journey. This website is new, so we would like you to be able to see Lily’s journey through her life with tuberous sclerosis and the obstacles Lily and her parents have overcome. Scott and Heather are not aware of this website, as it is a 2011 Christmas surprise to help take some of the financial burden out of their life due to multiple surgeries, hospital stays, doctor visits, medications, etc. We also hope this website will help raise awareness to the disease of tuberous sclerosis. Thank you for your time, prayers and donations.
– Sincerely, Aaron and Alicia Legg

Sweet Lily

shlbrewster — Wed, 19 Oct 2011 01:18:13 +0000

Lily is doing well today! She enjoyed a nice adventure to the zoo with Momma and Daddy. Within the last month Lily has endured three surgeries. She had ear tubes placed in both ears, a ureteral reimplantation due to stage 4 urinary reflux, and a umbilical hernia repair. Despite the constant appointments, IVs, worsened seizures, needle sticks for lab, and the fear of surgery, Heather and Scott have stayed hopeful and strong for Lily. I truly believe it is because of their attitudes, love and God’s grace that Lily has recovered wonderfully and quickly from each surgery! Yay Lily! I called Heather to check on Lily yesterday and got to hear her laugh which made my day! We just love this family so much. They are amazing and have touched our lives forever. We are praying people will share this site and share their story. **Special thanks to Cory for helping us get this site running. We appreciate his time and the love that he has given to us and the Brewster’s.

Diagnosis

shlbrewster — Thu, 25 Aug 2011 16:38:03 +0000

Tuberous sclerosis is a rare genetic disease that causes non-cancerous tumors 
to grow in many parts of the body, such as the skin, brain and kidneys. 
In most cases, tuberous sclerosis is detected during infancy or childhood. 
Lily had her first seizure July 5, 2009. Lilliana's diagnosis was confirmed 
in December of 2009. She was 11 months old.