I had a terrible day at school last Friday after we got back from St. Jude. I felt dizzy, I tripped and hit my arm and my head during the last class of the day. It seemed like everybody was laughing at me! I wanted to drop out of school! It was the worst day of my life! The only really good thing was Gizmo. He relaxes and lays his head on my shoulder and it helps me feel better.
After last weekend I felt better and I was ready to go back to school on Monday.
I made a new promise this week. I am going to pray the rosary every night before bedtime with Mom and Kaitlyn. No matter what is going on or if we don't have time or we are tired, Kaitlyn and Mom and I are going to pray the rosary. When my stepdad and Eric and Haley feel like joining us they can too! I am still reading my books about saints and I pray on my own before bed too.
Love, Bree
Note from Parents:
Since our return from St. Jude we have had our share of ups and downs. Brianna was inconsolable after her day at school last Friday. She just seems to be overly sensitive to anything/everything that happens around her. The teacher assured me that there were boys acting a little goofy in the back of the classroom to try to distract the others and get the attention off of Brianna. No matter what I tried to do to reason with her she insisted it was the worst day of her life and she was ready to drop out. Gizmo definitley proves good therapy as all it takes is for him to lay with Brianna and he knows to just relax and lay his head on her shoulder. Brianna repeated numerous times how much she loved Gizmo.Well, by Monday, she was back to normal being her perky, laughing, goofy, self telling us long, random stories only this time she did have points she wanted to make. This school week went pretty well and she is going (with a big push from me) to attend the Gregory GIG (school dance) with sister Haley, BF Maddy, and her other close friends. I told her the more fun you put into the more fun you'll have. I am sending Brianna and Haley with cameras so it should be interesting what they come back with.I must add a note that I appreciate all of your kinds words of encouragment and continued prayers as I have been struggling over the past several days and needed to return home from work to try to regain positive state of mind and refocus on my faith to carry me through these difficult times. I wish I could plan my meltdowns on weekends when we do not have the kids....but obviously this is not something that can be planned. However, in the midst I found great support from people at work who comforted me and allowed me an opportunity to share my thoughts, feelings, and hope for what the future will hold.I also recieve plenty of support from family and friends at home, especially my husband Bob and my sister-in-law/spiritual advisor Georgia who are both very strong support and immediately change my focus. I will be reliving all events in a positive way as Kaitlyn has decided to enter the Young Author's Contest to write a book about Brianna, her story and wonderful St. Jude! I think this will be great therapy for Kaitlyn! I am looking forward to seeing what she has planned! Brianna, Kaitlyn and I have taken on a new committment which is long overdue!! She is an abslute wonder to me and amazes me with her deep faith!!I had reflected back to when Brianna was a baby and toddler and remebered that the one item she grew attached to (as every child has something whenther it's a "woobie," "blankie," "paciy," "dolly," or "teddy," Brianna's special item was a praying bear named "Hope Bear." I thought how interesting it is that from the time she was a baby she has been clinging to 'HOPE' and it made my heart fill with joy because it is so symbolic and meaningful for her to have always had 'HOPE.'Please pray for Max, our little buddy who we wish we could play with soon! Pray that they have a safe trip for their Make-A-Wish vacation. Also, please pray for Liam and Kole as they continue to fight DIPG. Pray for Brianna and all the DIPG children that thier tumors may remain stable or continue to shrink and make progres towards finding complete healing. We believe in miracles and we believe in the strength and courage of the these children. May God's mercy shine on them and the power of His healing lead them to experience the true power and mercy of our Lord!
God Bless Everyone!
Love, Brianna's family: Mom & Stepdad Jennifer and Bob Siemann, Eric, Haley, and Kaitlyn
Friday, February 13, 2009
Friday, February 6, 2009
St. Jude Checkup - February 5
Well, I had to go back to St. Jude for 2 days for more appointments. We just got back home today. I had another MRI and I was disappointed that they said it didn't show that the tumor is shrinking. But the good news is that it doesn't look like it's growing either! :) The doctors said there is one part of the tumor that they are going to watch real close because it looks like the shape is changing and it looks different than before. They said it looks more "dense". I'll let my mom write about that stuff cause I just want it to go away!
Thank you to everybody for praying for me and helping me be strong. Love, Bree
Note from Jennifer, Brianna's Mom:
As Brianna said, part of the tumor looks more "dense." The doctor said it could be one of two things...either a reaction from the radiation that is still at work or a beginning of "an angry tumor." This would mean that the tumor will begin growing again. The doctors, nurses and therapists were amazed at how well Brianna is doing and how great she looks! I guess that is why the news was difficult to take in as everything seems to be going so well.The doctors have labeled the tumor "STABLE" and our goal is to keep it that way. Brianna will continue with her strict diet and she has started taking the vitamins and supplements recommended by the nutritionist. We believe all of the proactive methods we are introducing will keep the tumor stable. I explained to Brianna previously that people can live with tumors as long as they don't grow or cause symptoms that make people sick. Our goal is to shrink the tumor or at least keep it stable where she does not exhibit any symptoms.While we continue to pray for her healing and for the tumor to shrink or at least remain stable we are also exploring options in case the tumor does progress. Brianna's father, Matt, will be traveling to Houston to visit a clinic that treats recurrent DIPG tumors. We will also be researching other options and praying for a breakthrough which may prove to be the cure. We feel it is better to be armed with knowledge and prepare for the worst case scenario rather than wait it out. We hope we do not have to utilize any of these other resources but if we do, we need to be prepared. Insurance companies usually do not cover experimental treatments but we hope that the FDA approval of the clinical trial in Houston might convince the insurance company to pay at least part of the cost of treatment.We have been told many times by many people to take one day at a time. I will admit that it seems to be an impossible feat for me as I have always planned my future by days, weeks, months, and even years. I am lucky to have a lot of support from people who are very positive and have a deep faith in God. My faith is tested every day and I question whether it is enough! I am blessed to have a wonderful network of family and friends who are able to keep me focused on the positive. I remember Fr. Ted's homily where he made it very clear that we must make a choice to live in the light or live in the darkness. Whenever I am pulled into negative thoughts or experience negative feelings I always have someone that can guide me back to the light. Though I am struggling with this news and disappointed in the fact that the tumor did not shrink, I will try to focus on how well Brianna is doing right now and be glad that the tumor is stable and has not grown.We are scheduled to return around April 7th-10th. Please pray that the radiation continues to work the next few weeks and that the diet and vitamins provide what Brianna needs to continue to fight the tumor. I will continue to pray for guidance and for a deeper faith in God's power to heal.
Thank you for all of your support and prayers.
Jennifer
Thank you to everybody for praying for me and helping me be strong. Love, Bree
Note from Jennifer, Brianna's Mom:
As Brianna said, part of the tumor looks more "dense." The doctor said it could be one of two things...either a reaction from the radiation that is still at work or a beginning of "an angry tumor." This would mean that the tumor will begin growing again. The doctors, nurses and therapists were amazed at how well Brianna is doing and how great she looks! I guess that is why the news was difficult to take in as everything seems to be going so well.The doctors have labeled the tumor "STABLE" and our goal is to keep it that way. Brianna will continue with her strict diet and she has started taking the vitamins and supplements recommended by the nutritionist. We believe all of the proactive methods we are introducing will keep the tumor stable. I explained to Brianna previously that people can live with tumors as long as they don't grow or cause symptoms that make people sick. Our goal is to shrink the tumor or at least keep it stable where she does not exhibit any symptoms.While we continue to pray for her healing and for the tumor to shrink or at least remain stable we are also exploring options in case the tumor does progress. Brianna's father, Matt, will be traveling to Houston to visit a clinic that treats recurrent DIPG tumors. We will also be researching other options and praying for a breakthrough which may prove to be the cure. We feel it is better to be armed with knowledge and prepare for the worst case scenario rather than wait it out. We hope we do not have to utilize any of these other resources but if we do, we need to be prepared. Insurance companies usually do not cover experimental treatments but we hope that the FDA approval of the clinical trial in Houston might convince the insurance company to pay at least part of the cost of treatment.We have been told many times by many people to take one day at a time. I will admit that it seems to be an impossible feat for me as I have always planned my future by days, weeks, months, and even years. I am lucky to have a lot of support from people who are very positive and have a deep faith in God. My faith is tested every day and I question whether it is enough! I am blessed to have a wonderful network of family and friends who are able to keep me focused on the positive. I remember Fr. Ted's homily where he made it very clear that we must make a choice to live in the light or live in the darkness. Whenever I am pulled into negative thoughts or experience negative feelings I always have someone that can guide me back to the light. Though I am struggling with this news and disappointed in the fact that the tumor did not shrink, I will try to focus on how well Brianna is doing right now and be glad that the tumor is stable and has not grown.We are scheduled to return around April 7th-10th. Please pray that the radiation continues to work the next few weeks and that the diet and vitamins provide what Brianna needs to continue to fight the tumor. I will continue to pray for guidance and for a deeper faith in God's power to heal.
Thank you for all of your support and prayers.
Jennifer
Healing Prayers! Thank You! February 2
Special Note from Brianna's Mom, Jennifer:
It has been quite awhile since I posted an update so I hope you are patient with me as I have much news to share...
We leave tomorrow morning for St. Jude. I am extremely anxious and pray for good test results. We will return on Thursday and I will post an update with any/all results from the trip.
We have been incredibly busy over the last couple of weeks. Bob and I took Brianna to meet Fr. Rookey (healing priest in Olympia Fields) and the experience left Brianna speechless...until the 45 minute car ride home where she couldn't stop talking about the experience. I asked Brianna if she wanted me to hold her rosary as we were getting ready to leave and she glared at me with an "Are you crazy?" look and pulled it away from me. She immediately packed the rosary in her bag as Matt picked the girls up for Disney that evening. She has been praying every night, but has taken a new interest in praying the rosary and reading stories about different saints. Brianna left Fr. Rookey and his assistants with the following advice:1. BE PERSISTENT!! Never stop praying and asking for divineintervention.2. Pray the Rosary!! Every day even if you don't remember how, just sayany prayer you know for each bead.3. "Nag" Mary the Blessed Mother---just like you nag your ownmother...never stop until yourprayers are answered. (This shouldnot be a problem for her at all!!)
Last week I took Brianna and Kaitlyn to a healing mass in Northlake. Thanks to Coach Dougherty and the LW Central football team I was able to make a connection with a parent who told me a story about a woman who was miraculously healed from an inoperable brain tumor. Her name is Colleen Willard and the connection she felt with Brianna is remarkable. Thank you Sharon Kolava for inviting us to this mass as we look forward to more opportunities to become closer to God and feel the love of Jesus and the Blessed Mother. Colleen Willard, laying her healing hands on Brianna, brought us much strength and peace. Colleen made it clear to me and all who were present that, "Brianna is a special child chosen by God and has a strong spirit to endure such suffering." "Brianna has a special purpose and closeness with Jesus and is truly in the hands of God." She is carried by Jesus and also the Blessed Mother who guides her and watchs over her constantly. Colleen leaned over to me and said that she has three words she wants me to repeat over and over, "Don't Be Discouraged!" This is my greatest obstacle to overcome as I struggle daily with these feelings. How did she know to say those exact three words?
Finally, I have several people I would like to thank for their hard work, kindness and generosity.1. Lincoln-Way staff and students for the warm welcome back! It iswonderful to be able to see everyone after so long and finally beable to personally thank them for their continued love and supportfor Brianna, myself and our family.2. Leanne Lacewell and friends for the many meals provided in order tomake my return to work as stress-free as possible. Food is delicious!3. Gregory Middle School staff and students who coordinated andparticipated in the hat day fundraiser for Brianna, as well asthe Baylie's for Brianna, and Brianna's Brigade t-shirt fundraisers.4. Mary Onley for coordinating, and everyone who participated in theJewel Shop-and-Share fundraiser. Your continued support is greatlyappreciated and we hope you are able to help us out againbefore Easter and Memorial Day!5. Thank you to everyone who has joined Brianna's Brigade by purchasinga t-shirt. Initial orders were submitted today, but we will continueselling and placing orders as we receive more requests. Brianna isvery excited that people are going to wear HER t-shirts!5. My husband Bob, whose love and hard work are very much appreciatedand admired. He has taken on many additional responsibilities anderrands while I tend to Brianna and try to get back to mywork routine. I probably don't thank him enough for all that he doesfor our family! The thing I need to thank him for most of all is hisdeep spiritual faith and ability to pray with and for Brianna tobring peace to her when she needs it most. When I feel discouragedor have moments of weakness Bob is able to get me through.
We are very happy to report that Max's tumor is down 30%!! Please continue praying for all the DIPG children and send some extra prayers for Brianna as she undergoes a 2 hour MRI on Wednesday. May she be blessed with God's mercy and experience the Lord's healing power and may she grow in hope and faith as she continues on her spiritual journey.
God Bless!!
Jennifer (Brianna's Mom)
It has been quite awhile since I posted an update so I hope you are patient with me as I have much news to share...
We leave tomorrow morning for St. Jude. I am extremely anxious and pray for good test results. We will return on Thursday and I will post an update with any/all results from the trip.
We have been incredibly busy over the last couple of weeks. Bob and I took Brianna to meet Fr. Rookey (healing priest in Olympia Fields) and the experience left Brianna speechless...until the 45 minute car ride home where she couldn't stop talking about the experience. I asked Brianna if she wanted me to hold her rosary as we were getting ready to leave and she glared at me with an "Are you crazy?" look and pulled it away from me. She immediately packed the rosary in her bag as Matt picked the girls up for Disney that evening. She has been praying every night, but has taken a new interest in praying the rosary and reading stories about different saints. Brianna left Fr. Rookey and his assistants with the following advice:1. BE PERSISTENT!! Never stop praying and asking for divineintervention.2. Pray the Rosary!! Every day even if you don't remember how, just sayany prayer you know for each bead.3. "Nag" Mary the Blessed Mother---just like you nag your ownmother...never stop until yourprayers are answered. (This shouldnot be a problem for her at all!!)
Last week I took Brianna and Kaitlyn to a healing mass in Northlake. Thanks to Coach Dougherty and the LW Central football team I was able to make a connection with a parent who told me a story about a woman who was miraculously healed from an inoperable brain tumor. Her name is Colleen Willard and the connection she felt with Brianna is remarkable. Thank you Sharon Kolava for inviting us to this mass as we look forward to more opportunities to become closer to God and feel the love of Jesus and the Blessed Mother. Colleen Willard, laying her healing hands on Brianna, brought us much strength and peace. Colleen made it clear to me and all who were present that, "Brianna is a special child chosen by God and has a strong spirit to endure such suffering." "Brianna has a special purpose and closeness with Jesus and is truly in the hands of God." She is carried by Jesus and also the Blessed Mother who guides her and watchs over her constantly. Colleen leaned over to me and said that she has three words she wants me to repeat over and over, "Don't Be Discouraged!" This is my greatest obstacle to overcome as I struggle daily with these feelings. How did she know to say those exact three words?
Finally, I have several people I would like to thank for their hard work, kindness and generosity.1. Lincoln-Way staff and students for the warm welcome back! It iswonderful to be able to see everyone after so long and finally beable to personally thank them for their continued love and supportfor Brianna, myself and our family.2. Leanne Lacewell and friends for the many meals provided in order tomake my return to work as stress-free as possible. Food is delicious!3. Gregory Middle School staff and students who coordinated andparticipated in the hat day fundraiser for Brianna, as well asthe Baylie's for Brianna, and Brianna's Brigade t-shirt fundraisers.4. Mary Onley for coordinating, and everyone who participated in theJewel Shop-and-Share fundraiser. Your continued support is greatlyappreciated and we hope you are able to help us out againbefore Easter and Memorial Day!5. Thank you to everyone who has joined Brianna's Brigade by purchasinga t-shirt. Initial orders were submitted today, but we will continueselling and placing orders as we receive more requests. Brianna isvery excited that people are going to wear HER t-shirts!5. My husband Bob, whose love and hard work are very much appreciatedand admired. He has taken on many additional responsibilities anderrands while I tend to Brianna and try to get back to mywork routine. I probably don't thank him enough for all that he doesfor our family! The thing I need to thank him for most of all is hisdeep spiritual faith and ability to pray with and for Brianna tobring peace to her when she needs it most. When I feel discouragedor have moments of weakness Bob is able to get me through.
We are very happy to report that Max's tumor is down 30%!! Please continue praying for all the DIPG children and send some extra prayers for Brianna as she undergoes a 2 hour MRI on Wednesday. May she be blessed with God's mercy and experience the Lord's healing power and may she grow in hope and faith as she continues on her spiritual journey.
God Bless!!
Jennifer (Brianna's Mom)
Tuesday, February 3, 2009
Fundraiser Results
Note from Brianna's Dad Matt:
Just an update on the fundraiser that was held Saturday afternoon. A great time was had by all and it was a great success! We want to thank everyone that came from near and far to attend! I would like to thank Mike for hosting the event at his pub in Oak Lawn. He and his staff did such a phenomenal job.
I also would like to thank my mom, Pat for all her hard work and dedication to making it the success that it was! She worked so hard on getting the donations and organizing them into baskets. Thank you Mom !
Maria and her mom, Madeline did a wonderful job organizing the donations that they received from people.Maria worked hard at getting donations in and they both worked so hard to make sure everything was put together just right and her mom did a great job making the sauce and the pasta. Thank you for all of your hard work!
My brothers, Ryan, Scott and Justin worked really hard to get donations in as well and helped to organize the event. They all did a great job for not having done this before!
The band Two Dollars played a great set and everyone enjoyed their music! Dan Guzman followed up with his acoustic playing and a great job.Thanks to all of them for donating their time and talents to the event! Everyone enjoyed the entertainment!
The silent auction was a success as just about every item was bid on and won by various people who attended! Thanks to all people and companies who donated items for the silent auction. We couldn't have done it without you.
I must say that I am overwhelmed by the generosity of everyone and the turnout that we had. I was blown away by the number of people that came. Especially those that had come from so far away! Thanks to all of you that came! We certainly couldn't have done this without you either!
We are headed down to Memphis this week for more appointments and tests and most importantly the MRI which will tell us the status of the tumor. Please have Brianna in your thoughts and prayers this week as she goes back down for these results!
Also keep Max, Kole, Skyler, Lizzie and all the other DIPG kids in your prayers as they continue on their journeys!
We will keep you updated as Jennifer will be doing the updates before they leave and again after we get the results.
Thanks for checking in!
Matt
Just an update on the fundraiser that was held Saturday afternoon. A great time was had by all and it was a great success! We want to thank everyone that came from near and far to attend! I would like to thank Mike for hosting the event at his pub in Oak Lawn. He and his staff did such a phenomenal job.
I also would like to thank my mom, Pat for all her hard work and dedication to making it the success that it was! She worked so hard on getting the donations and organizing them into baskets. Thank you Mom !
Maria and her mom, Madeline did a wonderful job organizing the donations that they received from people.Maria worked hard at getting donations in and they both worked so hard to make sure everything was put together just right and her mom did a great job making the sauce and the pasta. Thank you for all of your hard work!
My brothers, Ryan, Scott and Justin worked really hard to get donations in as well and helped to organize the event. They all did a great job for not having done this before!
The band Two Dollars played a great set and everyone enjoyed their music! Dan Guzman followed up with his acoustic playing and a great job.Thanks to all of them for donating their time and talents to the event! Everyone enjoyed the entertainment!
The silent auction was a success as just about every item was bid on and won by various people who attended! Thanks to all people and companies who donated items for the silent auction. We couldn't have done it without you.
I must say that I am overwhelmed by the generosity of everyone and the turnout that we had. I was blown away by the number of people that came. Especially those that had come from so far away! Thanks to all of you that came! We certainly couldn't have done this without you either!
We are headed down to Memphis this week for more appointments and tests and most importantly the MRI which will tell us the status of the tumor. Please have Brianna in your thoughts and prayers this week as she goes back down for these results!
Also keep Max, Kole, Skyler, Lizzie and all the other DIPG kids in your prayers as they continue on their journeys!
We will keep you updated as Jennifer will be doing the updates before they leave and again after we get the results.
Thanks for checking in!
Matt
Pictures and Fundraiser
Note from Parents:
Just wanted to let everyone know that I posted a few pictures from the Disney trip! You can see them on www.carepages.com/carepages/BriannaSharp.
It was an amazing and fun trip for all of us and I am glad you all are able to stop by and view some pictures from the trip.
I also wanted to remind everyone about the Brianna Fundraiser Benefit that will be held at:
Saturday, January 31, 20091:00pm - 5:00pmQuigley's Pub4010 W 111th StOak Lawn, Illinois
The cover charge is $30 per adult ($20 of your cover will be donated to the Brianna Sharp Medical Fund). The cover charge will include domestic beer, wine, soft drinks and food. There will also be a silent auction and live entertainment.
We have bunch of great silent auction items such as 4 Bulls tickets with parking passes, Cubs tickets, Golf foursomes at various courses throughout Chicagoland and some gift certificates to many restaurants.We hope to see you there and we thoroughly appreciate your support.
Thank you so much for all of your love and support!
As always please pray for Max, Kole, Skyler and the rest of the kids fighting the battle against DIPG.
Love, Bree's parents
Just wanted to let everyone know that I posted a few pictures from the Disney trip! You can see them on www.carepages.com/carepages/BriannaSharp.
It was an amazing and fun trip for all of us and I am glad you all are able to stop by and view some pictures from the trip.
I also wanted to remind everyone about the Brianna Fundraiser Benefit that will be held at:
Saturday, January 31, 20091:00pm - 5:00pmQuigley's Pub4010 W 111th StOak Lawn, Illinois
The cover charge is $30 per adult ($20 of your cover will be donated to the Brianna Sharp Medical Fund). The cover charge will include domestic beer, wine, soft drinks and food. There will also be a silent auction and live entertainment.
We have bunch of great silent auction items such as 4 Bulls tickets with parking passes, Cubs tickets, Golf foursomes at various courses throughout Chicagoland and some gift certificates to many restaurants.We hope to see you there and we thoroughly appreciate your support.
Thank you so much for all of your love and support!
As always please pray for Max, Kole, Skyler and the rest of the kids fighting the battle against DIPG.
Love, Bree's parents
Last Day at Disney - January 26
Hi Everybody!
This was a fantastic trip for me. My dad never has been able to take Kaitlyn and me on a vacation before and he told me that my Uncle Brad and Aunt Lisa bought my plane tickets! Wow! Thank you so much. And Grandma made the reservations at All Star Sports and that was an awesome Christmas present!
Yesterday Kaitlyn and I got to swim at the pool right outside our room. It was 78 degrees yesterday and the weather for swimming was perfect and I am glad we got a chance to go swimming. We had to say goodbye to Grandma Mollo and Aunt Kate and Patrick when they left around noon to go back to the airport. It was great to have them with us for the trip and we were sad to see them leave.
We had lunch and then rode the shuttle to Madison's meet. Gianna had a stomach ache and yuck! we didn't have enough diapers with us! Dad got in a cab with her and went back to the hotel. Kaitlyn and I stayed and watched Madison compete where she won two medals and did a fantastic job! It was really cool to see all those girls compete. There is no way I could ever be that flexible!
Today is our last day in Florida and we leave around noon to catch a bus to the airport. This has been a fantastic trip and I am glad everybody is reading this so you can see that even though I have been sick I am getting better all the time!
Love,
Bree
Note from Parents:
Don't forget the fundraiser for Brianna next Saturday at Quigley's Irish Pub in Oak Lawn, Illinois. $30 to get in for all you can eat and drink and $20 of it goes to Brianna's fund. We are still accepting donations for silent auction or raffle so if you have any please contact Matt at 630-670-8481 or by email at sharpie0473@yahoo.com
thanks for stopping by and take care!
Love, Brianna's Parents
This was a fantastic trip for me. My dad never has been able to take Kaitlyn and me on a vacation before and he told me that my Uncle Brad and Aunt Lisa bought my plane tickets! Wow! Thank you so much. And Grandma made the reservations at All Star Sports and that was an awesome Christmas present!
Yesterday Kaitlyn and I got to swim at the pool right outside our room. It was 78 degrees yesterday and the weather for swimming was perfect and I am glad we got a chance to go swimming. We had to say goodbye to Grandma Mollo and Aunt Kate and Patrick when they left around noon to go back to the airport. It was great to have them with us for the trip and we were sad to see them leave.
We had lunch and then rode the shuttle to Madison's meet. Gianna had a stomach ache and yuck! we didn't have enough diapers with us! Dad got in a cab with her and went back to the hotel. Kaitlyn and I stayed and watched Madison compete where she won two medals and did a fantastic job! It was really cool to see all those girls compete. There is no way I could ever be that flexible!
Today is our last day in Florida and we leave around noon to catch a bus to the airport. This has been a fantastic trip and I am glad everybody is reading this so you can see that even though I have been sick I am getting better all the time!
Love,
Bree
Note from Parents:
Don't forget the fundraiser for Brianna next Saturday at Quigley's Irish Pub in Oak Lawn, Illinois. $30 to get in for all you can eat and drink and $20 of it goes to Brianna's fund. We are still accepting donations for silent auction or raffle so if you have any please contact Matt at 630-670-8481 or by email at sharpie0473@yahoo.com
thanks for stopping by and take care!
Love, Brianna's Parents
Disney Day 3 - January 24
Today started real early for a vacation day! Kaitlyn and I got up around 7:00 and showered and got dressed and ready for a day of fun at Animal Kingdom and EPCOT. When we got to Animal Kingdom we saw a show with the characters from A Bug's Life. It was a pretty funny show and the 3D effects were really good! Then we rode the dinosaur rid and I laughed and screamed all the way through it. We rode it a couple of times and then we went to Expedition Everest. Some of us thought it was the best ride all day! We rode that ride a couple of times too and then we had lunc. Dad and I had lunch at this Oriental restaurant where they had steamed rice and vegetables. I'm doing pretty good finding stuff that is on my diet.For breakfast I usually have fruit, like grapes and a banana and for lunch I try to find something on my diet and then at dinner I usually have a salat. I have only really had one meal where I got to have a little treat by eating chicken nuggets and a couple of fries. We also brought some organic stuff from Fruitful Yield back home (like organic milk and other stuff). It wasn't as expensive as the food at Whole Foods.
After lunch Maria and Grandma Spinello took Gianna to see Nemo and Grandma Mollo and Aunt Kate took in some of the sights and me and the other kids and Dad went on Expedition Everest about 3 or 4 more times! Its always pretty funny to see the pictures when they get off the ride and after a while we started posing for those pictures. Some of them were pretty hilarious.
When we left Animal Kingdom we got on a bus and went to EPCOT center. Riding the "Soarin" ride at EPCOT was very cool. I think it was Dad's favorite and he kept watching me cause I thought it was really awesome and exciting. All of us kids got our pictures taken with Mickey, Minnie and the rest of the gang! Pluto tried to LICK me, but NO WAY!!!! Alice from Alice in Wonderland gave me a big hug and told her good luck and then we headed to the last ride of the day which was Test Track. This this ride was probably her favorite. When the ride was done we were ready to go back to the hotel.
We headed back to our room and along the way I got another salad (Dad tried some and he even though it was REALLY good). Then we just wanted to head back to the room and chill out. After two days of doing so much I was really tired. I took my chemo and other stuff and fell asleep really fast!
Love, Bree
Note from Parents:
I have been able to upload some pictures to my facebook and when we get back home I will work on getting them uploaded to the carepages site as well as the curebrianna.com site. Thanks to all that have stopped by and given Brianna words of encouragement! Its appreciated more than you will know!
On a side note, I noted today a link on my facebook an article about Senator Chuck Shumer and Senator David Vitter who are sponsoring a bill to help establish a new National Childhood Brain Tumor Network which will help shine a bright spotlight on Brianna's type of cancer among many other types of Childhood Brain Cancers! I will update everyone more on this via the curebrianna.com website as I get more information from Senator Shuman's office which should take a week or so.
Please keep Max, Kole, Skyler, and all the DIPG kids in your prayers. With your help this thing can be beaten!
Love, Brianna's family; Matt, Maria, and the rest of the clan down here in Florida !!!!
After lunch Maria and Grandma Spinello took Gianna to see Nemo and Grandma Mollo and Aunt Kate took in some of the sights and me and the other kids and Dad went on Expedition Everest about 3 or 4 more times! Its always pretty funny to see the pictures when they get off the ride and after a while we started posing for those pictures. Some of them were pretty hilarious.
When we left Animal Kingdom we got on a bus and went to EPCOT center. Riding the "Soarin" ride at EPCOT was very cool. I think it was Dad's favorite and he kept watching me cause I thought it was really awesome and exciting. All of us kids got our pictures taken with Mickey, Minnie and the rest of the gang! Pluto tried to LICK me, but NO WAY!!!! Alice from Alice in Wonderland gave me a big hug and told her good luck and then we headed to the last ride of the day which was Test Track. This this ride was probably her favorite. When the ride was done we were ready to go back to the hotel.
We headed back to our room and along the way I got another salad (Dad tried some and he even though it was REALLY good). Then we just wanted to head back to the room and chill out. After two days of doing so much I was really tired. I took my chemo and other stuff and fell asleep really fast!
Love, Bree
Note from Parents:
I have been able to upload some pictures to my facebook and when we get back home I will work on getting them uploaded to the carepages site as well as the curebrianna.com site. Thanks to all that have stopped by and given Brianna words of encouragement! Its appreciated more than you will know!
On a side note, I noted today a link on my facebook an article about Senator Chuck Shumer and Senator David Vitter who are sponsoring a bill to help establish a new National Childhood Brain Tumor Network which will help shine a bright spotlight on Brianna's type of cancer among many other types of Childhood Brain Cancers! I will update everyone more on this via the curebrianna.com website as I get more information from Senator Shuman's office which should take a week or so.
Please keep Max, Kole, Skyler, and all the DIPG kids in your prayers. With your help this thing can be beaten!
Love, Brianna's family; Matt, Maria, and the rest of the clan down here in Florida !!!!
Disney Days! January 22
My vacation started yesterday morning when the limo picked us up at 8:30 am and we went to the airport. We had to stop in Washington DC to change planes and then we landed in Orlando. We finally go to the All Star Sports Resort and met up with Grandma Mollo and Uncle Patrick and Great Aunt Kate! Then I could tell the vacation had really started and I was really excited!We found our rooms and then got something to eat. We brought some things from my new diet from home but we also found some stuff like fruit plates and salads with vegetables that I can eat. I get to eat a few fun things because it is a vacation after all!
Today we got up and ate breakfast and went to Hollywood Studios. I got to ride the Tower of Terror a couple of times and the Rockin' Rollercoaster too! When we got to Hollywood Studios, guess what! There was Aunt Michele and Uncle Gary and dad's cousin Dawn and her family! I was really hapy to see Uncle Gary and Aunt Michele because they sent stuff to me and Kaitlyn when I was at St. Jude. I felt really good today and even kept up with Kaitlyn and that says a lot cause she is full of energy! After Hollywood Studios we went to the Magic Kingdom and rode some rides and it was a blast! We even rode the Monorail back from the Magic Kingdom and got back in time to see the fireworks. They were AWESOME!
When we got back to our room I took my medicine and then went to play with Patrick, Zachary, Madison, Kaitlyn and Gianna. I told my dad that today was so much fun I even forgot about the cancer for a while. I only really thought about it when we got in the bus and I remembered that I had to take my medicine!
Love,
Bree
Note from Parents:
She is fighting and battling this disease with more courage than I think I have ever seen a child have. All the DIPG kids are fighting this disease with the same vigor and Brianna prays for them all. Last night she prayed the rosary as she was laying in bed.
We pray for Max, Kole, Skyler and all the other children with DIPG. Keep them in your thoughts and prayers!
We will do another update tomorrow night! Stay tuned!
Love, Brianna's Family
Today we got up and ate breakfast and went to Hollywood Studios. I got to ride the Tower of Terror a couple of times and the Rockin' Rollercoaster too! When we got to Hollywood Studios, guess what! There was Aunt Michele and Uncle Gary and dad's cousin Dawn and her family! I was really hapy to see Uncle Gary and Aunt Michele because they sent stuff to me and Kaitlyn when I was at St. Jude. I felt really good today and even kept up with Kaitlyn and that says a lot cause she is full of energy! After Hollywood Studios we went to the Magic Kingdom and rode some rides and it was a blast! We even rode the Monorail back from the Magic Kingdom and got back in time to see the fireworks. They were AWESOME!
When we got back to our room I took my medicine and then went to play with Patrick, Zachary, Madison, Kaitlyn and Gianna. I told my dad that today was so much fun I even forgot about the cancer for a while. I only really thought about it when we got in the bus and I remembered that I had to take my medicine!
Love,
Bree
Note from Parents:
She is fighting and battling this disease with more courage than I think I have ever seen a child have. All the DIPG kids are fighting this disease with the same vigor and Brianna prays for them all. Last night she prayed the rosary as she was laying in bed.
We pray for Max, Kole, Skyler and all the other children with DIPG. Keep them in your thoughts and prayers!
We will do another update tomorrow night! Stay tuned!
Love, Brianna's Family
Home from the Hospital - January 17
Hi Everybody,
I had to go the the hospital for 3 days because I was taking some medicine for my toe. The medicine made my throat and stomach hurt. I also take chemo that I have to drink every night and it makes my throat and stomach burn. Finally it got so bad I couldn't eat or drink. So I went to the hospital and they fed me through a vein. It's called intravenous. I finally got home today. It was not a fun three days, but I made it home today so I can enjoy at least part of my mom's birthday with my family. I hope I keep getting better so I can go to Disneyworld with my dad and Kaitlyn for a long weekend. We are ALL really looking forward to it!
Love, Bree
Note from Parents:
Thank you for your prayers and thank you Leanne and Addie for your visit and carepackage of goodies! We really appreciate everyone supporting us through our journey and know the extra prayers over the past few days helped speed Brianna's recovery. We plan on enjoying the next couple of days before heading back to work and school. Please pray for a safe, enjoyable trip for Brianna as her energy will surely be tested with all of the excitement of Disney. Please continue to pray for all of the DIPG warriors and their families.
We will keep you updated with Brianna's progress and also with upcoming fundraisers. Jewel Shop & Share is the next fundraiser which will take place January 26th-28th so if you plan on shopping for a big Super Bowl party remember to get your shop and share slips! We will have them ready on January 22. Thank you so much for your support!
Love, Brianna's Family
I had to go the the hospital for 3 days because I was taking some medicine for my toe. The medicine made my throat and stomach hurt. I also take chemo that I have to drink every night and it makes my throat and stomach burn. Finally it got so bad I couldn't eat or drink. So I went to the hospital and they fed me through a vein. It's called intravenous. I finally got home today. It was not a fun three days, but I made it home today so I can enjoy at least part of my mom's birthday with my family. I hope I keep getting better so I can go to Disneyworld with my dad and Kaitlyn for a long weekend. We are ALL really looking forward to it!
Love, Bree
Note from Parents:
Thank you for your prayers and thank you Leanne and Addie for your visit and carepackage of goodies! We really appreciate everyone supporting us through our journey and know the extra prayers over the past few days helped speed Brianna's recovery. We plan on enjoying the next couple of days before heading back to work and school. Please pray for a safe, enjoyable trip for Brianna as her energy will surely be tested with all of the excitement of Disney. Please continue to pray for all of the DIPG warriors and their families.
We will keep you updated with Brianna's progress and also with upcoming fundraisers. Jewel Shop & Share is the next fundraiser which will take place January 26th-28th so if you plan on shopping for a big Super Bowl party remember to get your shop and share slips! We will have them ready on January 22. Thank you so much for your support!
Love, Brianna's Family
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