Going back to school is better than I expected! When Mom picked me up on Wednesday I told her I had a fun day and that was true! I decided I would take the bus on Thursday. At night I was still a little nervous but I woke up on Thursday all by myself and rode the bus to school and back home too. I had my friend Kylie come home with me to hang out for a while. I'm getting more energy and it's good to get things back to normal!
Love,
Bree
Note from Parents:
While Brianna was at school yesterday I (Jennifer) had to go to Whole Foods to do some shopping. Brianna's very strict diet makes it very difficult to shop as I need to read every single ingredient on every package. Hopefully, I will soon learn what brands and types of food are acceptable and through trial and error learn her likes and dislikes. Though we have not yet had our consultation with the nutritionist we have started her diet based on what other DIPG families have turned to from the recommendations from a particuluar nutritionist. Brianna's diet is completely organic but it goes beyond that as she also has to avoid sugar (organic sugar, organic brown sugar, artificial, etc.), dairy is very limited (Soy milk is o.k., Organic milk in very limited quantities), and she can only have 100% grass fed, free range beef. Other meats must be grass fed and of course all must be raised free of hormones, steroids, antibiotics, etc. The only acceptable "sugars" are Organic Evaporated Cane Juice, Agave Syrup, and Stevia. Not that you are interested in knowing these details but hopefully it gives you and understanding of how difficult it is to force a kid to make such a drastic change in their diet....AND why it takes me over 2 hours to pick up groceries for Brianna at Whole Foods!!
Through this process we are learning that there are healthy alternatives to every kind of food that Bri loves...however, it definitely comes at a price!!! It is too bad that ALL people can't afford to eat this healthy!! Brianna's diet has changed but it would be impossible do this for the entire family!! Anyways, hopefully Brianna's anxiety over the change in diet and feeling deprived will be relieved when she realizes that I was able to find acceptable alternatives to some of her favorite foods like chocolate "pop-tarts," spaghettio's, cookies, ice cream, etc. She still needs to keep those as special treats and continue to focus on loading up on vegetables, fruits, nuts, etc. We are lucky in that she has always loved vegetables, especially spinach and broccoli! I could not imagine making a change in a younger patients diet who does not enjoy fruits and vegetables. I admit I am quite concerned as to what she will eat when she travels back to St. Jude for her follow up visits and when she travels to Disney World with her dad in a couple of weeks!! Eating out is a huge obstacle, if not impossible when on her type of diet.
I will be returning to work on January 20 and must admit that I am experiencing the same anxiety as Brianna. However, I know that I have an unbelievable support system at Lincoln-Way and look forward to seeing my students and all of the staff after my 3 month absence! I am nervous about getting back into a routine after 3 months focusing my attention on taking care of Brianna full-time. Her return to school made me quite anxious and reminded me of dropping her off at her first day of kindergarten. I was proud and excited for her, but at the same time dreaded leaving her, wondering how she would do, and also missing her terribly! It's always harder on the parents than the children...isn't it?
We would like to thank everyone for their continued support and also let everyone know that not a day goes by where we are not reminded of how truly blessed we are to have you in our lives! Please continue to pray for Brianna, Max, Kole and all the DIPG Warriors as well as for all pediatric cancer patients. We pray for their healing and that their families find strength in their faith to see them through such a difficult journey. God bless!!
Love,
Brianna's Family
Monday, January 12, 2009
January 7 - Back to School!
I just found out that Quigley's Irish Pub in Oak Lawn will be hosting a fundraiser for me on January 31st from 1-5 PM. Everybody is welcome. There is a $30 cover charge and you can have domestic beer, wine, soft drinks and all food. There will also be a silent auction and live entertainment. If you need more information you can call or email my Dad: Matt Sharp @ 630-670-8481 or sharpie0473@yahoo.com
My family is also taking orders for Brianna's Brigade T-shirts. You can get white or gray, short sleeve or long sleeve with a special logo for my battle against DIPG (that tumor I have.) My Brianna's Brigade logo is a cross wrapped with a gold ribbon and it also has my cross country saying on the shirt, "Start fast, finish faster, start strong, finish stronger!" Short sleeve shirts are $15 and long sleeve shirts are $20. If you want to order a T-shirt, email my Mom at jensiemann@sbcglobal.net or my Dad at sharpie0473@yahoo.com
I went back to school today and my mom picked me up. I was a little nervous but I was happy to go back to school with my friends.
Love,
Bree
Note from Parents:
We pray that Brianna enjoyed her day and that her level of anxiety decreased after realizing the support system she has at Gregory Middle School. Everyone in our community has been so wonderful and compassionate we are truly blessed! Brianna was extremely anxious last night and could not get to sleep, but this morning she woke up in good spirits and when we dropped her off she seemed very happy to be back in school.
After dropping Brianna off at school I (Jennifer) met Leanne Lacewell (Max's mom) at Panera Bread. This was our first meeting and I was thrilled to finally get a chance to give her a big hug and talk about Max and Brianna. The Lacewells' are a blessing and have a special place in our hearts. After 2 1/2 hours I left Leanne with a big hug and a huge feeling of peace that we were finally able to meet and will have each other to support through our difficult journey. We discussed the kids and how they must have been chosen to endure this illness because they are special children with special hearts. Brianna and Max are very kind, caring, loving kids and have a unique ability to connect with all people. Brianna's smile and her openness to give hugs, and her empathy towards others despite what she has to endure makes her very unique. They are both very special to us AND to God.
Leanne and I also discussed how grateful we are to have an unbelievable community of people supporting us in a variety of ways. From giftcards, to medical fund donations, spiritual guidance and support, employers and co-workers kindness and understanding, neighbors support with meals, shopping, and errands, etc. The list goes on and on but we mostly want to thank everyone for all that they do and if we have not been able to send you a personal thank you note, please know that all gifts and actions no matter how big or small, do not go unnoticed or unappreciated. We are so overwhelmed by the generosity of people that we can not even begin to say thank you enough!!
Please continue to pray for Max and Brianna's healing and that they find the peace to take one day at a time and focus on God's love and the blessings in their lives. Fr. Ted's homily last week focused our attention on choosing to look towards the light and focus on our blessings and the many positive aspects in our lives, as opposed to dwelling on the darkness and allowing negative thoughts to enter our minds. Leanne and I both ask for Jesus to come to us when our thoughts turn negative and He helps us focus on the light. We are reminded of the blessings we have, especially the time we have with our children and family. Most of all, we are thankful for the deepening faith we have as a result of having to endure such a difficult road. Now we KNOW GOD and not just ABOUT GOD!
Love,
Brianna's Family
My family is also taking orders for Brianna's Brigade T-shirts. You can get white or gray, short sleeve or long sleeve with a special logo for my battle against DIPG (that tumor I have.) My Brianna's Brigade logo is a cross wrapped with a gold ribbon and it also has my cross country saying on the shirt, "Start fast, finish faster, start strong, finish stronger!" Short sleeve shirts are $15 and long sleeve shirts are $20. If you want to order a T-shirt, email my Mom at jensiemann@sbcglobal.net or my Dad at sharpie0473@yahoo.com
I went back to school today and my mom picked me up. I was a little nervous but I was happy to go back to school with my friends.
Love,
Bree
Note from Parents:
We pray that Brianna enjoyed her day and that her level of anxiety decreased after realizing the support system she has at Gregory Middle School. Everyone in our community has been so wonderful and compassionate we are truly blessed! Brianna was extremely anxious last night and could not get to sleep, but this morning she woke up in good spirits and when we dropped her off she seemed very happy to be back in school.
After dropping Brianna off at school I (Jennifer) met Leanne Lacewell (Max's mom) at Panera Bread. This was our first meeting and I was thrilled to finally get a chance to give her a big hug and talk about Max and Brianna. The Lacewells' are a blessing and have a special place in our hearts. After 2 1/2 hours I left Leanne with a big hug and a huge feeling of peace that we were finally able to meet and will have each other to support through our difficult journey. We discussed the kids and how they must have been chosen to endure this illness because they are special children with special hearts. Brianna and Max are very kind, caring, loving kids and have a unique ability to connect with all people. Brianna's smile and her openness to give hugs, and her empathy towards others despite what she has to endure makes her very unique. They are both very special to us AND to God.
Leanne and I also discussed how grateful we are to have an unbelievable community of people supporting us in a variety of ways. From giftcards, to medical fund donations, spiritual guidance and support, employers and co-workers kindness and understanding, neighbors support with meals, shopping, and errands, etc. The list goes on and on but we mostly want to thank everyone for all that they do and if we have not been able to send you a personal thank you note, please know that all gifts and actions no matter how big or small, do not go unnoticed or unappreciated. We are so overwhelmed by the generosity of people that we can not even begin to say thank you enough!!
Please continue to pray for Max and Brianna's healing and that they find the peace to take one day at a time and focus on God's love and the blessings in their lives. Fr. Ted's homily last week focused our attention on choosing to look towards the light and focus on our blessings and the many positive aspects in our lives, as opposed to dwelling on the darkness and allowing negative thoughts to enter our minds. Leanne and I both ask for Jesus to come to us when our thoughts turn negative and He helps us focus on the light. We are reminded of the blessings we have, especially the time we have with our children and family. Most of all, we are thankful for the deepening faith we have as a result of having to endure such a difficult road. Now we KNOW GOD and not just ABOUT GOD!
Love,
Brianna's Family
Wednesday, January 7, 2009
Thursday Night - January 1 - The Puppy
Note from Parents:
Check out the picture of Brianna's new puppy...GIZMO!!!
Brianna and Gizmo are having a great time. Kaitlyn and Haley are also helping out caring for the new puppy. Eric has decided that his new aquarium (donated by Petland) will be home to a piranha....though we are hoping to change his mind! We are not crazy about the idea of a carnivorous fish!! If we can't talk him out of it at least it will be out of sight in his bedroom!
Brianna is preparing to return to school. She is protesting only because she doesn't want homework! She decided she will return to school and just call if she feels tired and wants to come home. Brianna is looking forward to having lunch with her friends and they should be happy because the lunch table is too quiet with her being gone. They will enjoy her random stories that have no point! BUT...that is why we love her so much!!
Thank you for your support and prayers and we wish you a very wonderful and blessed new year!
Brianna's Family
Thursday - January 1 - My Wish!
I had a great time with my family AT HOME!! New Year's Eve was the BEST because it was my WISH DAY. Everybody treated me like a celebrity and it was so cool. I got to ride in a limosine and then I walked down a red carpet. There were photographers and reporters and a huge shopping trip to Petland. Make-A-Wish made my wish for a puppy come true on the best day of my live. They even told about it on TV! ABC and FOX news showed me smiling with my new puppy. Make-A-Wish secretly got them to keep the puppy that I had picked out right after I got home from the hospital. Then they gave me a huge surprise party at Petland before the store was really open. After all that excitement, I got to go home and take care of my puppy. It is a Shih-Poo named Gizmo. Kaitlyn tried to be a mommy to the puppy too. Right now, Mom is on duty at night if Gizmo needs to go outside. Pretty soon we will try to put some pictures on the website so you can see how cute Gizmo is!
Love, Bree
Note from Parents:
We would like to thank Make-A-Wish and Petland for making Brianna's wish day the, "best day of her life!" We commend the efforts of everyone involved! Brianna had the entire store to herself, family and friends and Petland staff escorted her around the store for her shopping spree. Renee and Lissa (Make-A-Wish team members) along with Mike and Adam (Petland general managers)and their staff treated Brianna like royalty! They also presented Eric, Haley, and Kaitlyn with generous gifts for the other pets we have at home (two hamsters and fish.) Mayor George Pradel of Naperville (who will always be referred to as Officer Friendly) was at the store. After the party the staff loaded the limo with the items and we headed home to begin our lessons in dog training. We were overwhelmed and grateful that the media was on hand to document this special day. Though Brianna is very shy...she definitely enjoyed the spotlight today. Her story will also appear in the Naperville Sun and I believe the Chicago Tribune. Hopefully, you will be able to read it online if you do not have a subscription!
This holiday season Brianna enjoyed watching Christmas movies, baking cookies, playing with siblings and friends, opening gifts and giving gifts. She did not ask for much as I said before...she was just happy to be home, but we both (despite having trouble getting in the Christmas spirit) ended the holiday season on a high note with her receiving her puppy on New Year's Eve. We enjoyed a quiet night at home, stayed up to ring in 2009, gave each other kisses, and said a special prayer for a happy, healthy, blessed 2009. We prayed for continued healing and for a year full of many blessings, especially Brianna's health! God bless you all and have a wonderful 2009!
Brianna's Family
})
Love, Bree
Note from Parents:
We would like to thank Make-A-Wish and Petland for making Brianna's wish day the, "best day of her life!" We commend the efforts of everyone involved! Brianna had the entire store to herself, family and friends and Petland staff escorted her around the store for her shopping spree. Renee and Lissa (Make-A-Wish team members) along with Mike and Adam (Petland general managers)and their staff treated Brianna like royalty! They also presented Eric, Haley, and Kaitlyn with generous gifts for the other pets we have at home (two hamsters and fish.) Mayor George Pradel of Naperville (who will always be referred to as Officer Friendly) was at the store. After the party the staff loaded the limo with the items and we headed home to begin our lessons in dog training. We were overwhelmed and grateful that the media was on hand to document this special day. Though Brianna is very shy...she definitely enjoyed the spotlight today. Her story will also appear in the Naperville Sun and I believe the Chicago Tribune. Hopefully, you will be able to read it online if you do not have a subscription!
This holiday season Brianna enjoyed watching Christmas movies, baking cookies, playing with siblings and friends, opening gifts and giving gifts. She did not ask for much as I said before...she was just happy to be home, but we both (despite having trouble getting in the Christmas spirit) ended the holiday season on a high note with her receiving her puppy on New Year's Eve. We enjoyed a quiet night at home, stayed up to ring in 2009, gave each other kisses, and said a special prayer for a happy, healthy, blessed 2009. We prayed for continued healing and for a year full of many blessings, especially Brianna's health! God bless you all and have a wonderful 2009!
Brianna's Family
})
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