Note from Brianna's Family:
We have received many Christmas cards from family and friends and yet have not had the opportunity to send any out this year. Brianna's Mom and Stepdad have posted their Christmas picture on www.carepages.com and promise that next year we will definitely get cards out to everyone.
We hope everyone has a very happy and blessed holiday and we pray for a wonderful and blessed 2009!!!
Merry Christmas and Happy New Year!
P.S. In a few days we will update you with more information about the holiday and the Make-a-Wish surprise!! Check back after New Year's Eve!!
Brianna's Family
Monday, December 29, 2008
Friday - December 19 - Online Fundraiser
Note from Bree's Parents:
Hello everyone! We would like to pass along the website link to a online fundraiser for magazine renewals and new subscriptions! 40% of the proceeds will come back to Brianna's Medical Fund which was created to help cover what insurance doesn't cover! You will also see that there are some great prizes involved for those who recruit others to join!
Please visit the following link to learn more!
www.magfundraising.com/TheBriannaSharpMedicalFund
If the link doesn't work in this update just cut and paste into your browser and you should be all good to go!
If anyone has any questions don't hesitate to contact me directly!
Regards,
Brianna's Dad, Matt
630-670-8481
Hello everyone! We would like to pass along the website link to a online fundraiser for magazine renewals and new subscriptions! 40% of the proceeds will come back to Brianna's Medical Fund which was created to help cover what insurance doesn't cover! You will also see that there are some great prizes involved for those who recruit others to join!
Please visit the following link to learn more!
www.magfundraising.com/TheBriannaSharpMedicalFund
If the link doesn't work in this update just cut and paste into your browser and you should be all good to go!
If anyone has any questions don't hesitate to contact me directly!
Regards,
Brianna's Dad, Matt
630-670-8481
Thursday - December 18 - A Friendly Surprise!
Hi Everyone!
I am slowly getting back to my regular routine. I am a little nervous about going back to school. Part of it is because I have been gone so long and the other part is that the medicine they gave me made me puffy and it's a little scary to see my friends. I'm afraid they will think I look too different. But I had a really cool surprise. Some of my friends from school invited me and Kaitlyn over on Sunday and there was Haley and all of my friends from school! We played board games and they even had special organic snacks that are good for me and my friends liked them too! Now I know my friends are true friends and they won't treat me any different because I got sick. Today I went for a visit to Gregory Middle School and I got a big hug from some of my teachers and I have to admit I'm feeling great! I will do just about anything to go back to school and get back to normal! Sunday the Make-A-Wish people came to see if I had a wish they could grant. At first I wanted to go on a vacation with my whole family, but then when I thought about it, I decided that I would rather have my own puppy. A vacation doesn't last very long, but a puppy can be with you every day! I really want a Shih-Poo. It's half Shihtzu and half Poodle. It is SOOOOO cute! I really hope they grant my wish! Kaitlyn even told them what her wish would be, even though she didn't get sick! She wants to meet Miley Cyrus. That would be cool, too, but I still want a puppy. Last night the doorbell rang and Kaitlyn wouldn't answer it so I had to. There was Santa Claus! He just came by to wish us Merry Christmas and hopes that I feel better. It's really nice to know how many people are helping me get well. Thank you to everybody and I hope everybody has as good a Christmas as I'm going to have!
Love,
Bree
Note from Parents:
Our goal is to have Brianna return to school after the holiday break if only for a few hours a day and then eventually build to a full-time schedule. She is experiencing a little anxiety about returning to school. The swelling from the steroids is going down but we need to have patience. Part of her anxiety was reduced after she was surprised by a group of friends from school. Maddy and Camilla Ose invited Brianna and Kaitlyn over this past Sunday afternoon. Brianna was surprised to see Haley and all of her friends from school. Brianna has an extraordinary group of friends, a protective older brother (Eric-same school) and a sister (Haley-same school)who will be a huge support system when she returns. On our visit to Gregory Middle School, she admitted to Mrs. Binder (band instructor) that she is feeling, "Great!" Not good, but great! I asked her if being at the school makes her miss it and she said yes. I believe that she will do whatever it takes to return the first day back from break!
Sunday late afternoon we were visited by Brianna's Make-A-Wish team, Renee and Lissa. Brianna was interviewed and discussed how her two top wishes would be a puppy or a vacation with all of her family. When asked which one she would lean towards more she admitted a puppy. Since we returned from St. Jude, Brianna was asking daily if we could take her to pet stores so she could look at puppies. I think that after her experience with the therapy dogs at St. Jude she was convinced that a dog would be her number one wish. Ultimately, Brianna has wished for a puppy (she already had one picked out as she has her heart set on a Shih-Poo) and when I called Petland later that evening I found out that the puppy was still there. Petland and Make-A-wish are currently working on granting Brianna's wish which will take place the morning of December 31st. Last night there was a visit from Santa. Bob and I were not witness to this as I was taking part in an online volleyball training session while Bob and Eric were working on making holiday ornaments.
We will keep you updated throughout the holiday season, especially to let you know how her Make-A-Wish day was spent. We would like to wish everyone a blessed holiday season. The St. Jude commerical states, "Give thanks to the healthy children in your lives." and we ask that you pray for those who are not. Though we are home and Brianna is feeling great we would ask that you please continue to pray for her continued healing and for her to be blessed with God's mercy as He restores her to complete health. We also pray for all of the DIPG children and their families that they have the strength and courage to continue their journey with faith and hope. Please pray for all children with cancer that they may be blessed with God's grace and mercy.
Love,
Bree's Family
I am slowly getting back to my regular routine. I am a little nervous about going back to school. Part of it is because I have been gone so long and the other part is that the medicine they gave me made me puffy and it's a little scary to see my friends. I'm afraid they will think I look too different. But I had a really cool surprise. Some of my friends from school invited me and Kaitlyn over on Sunday and there was Haley and all of my friends from school! We played board games and they even had special organic snacks that are good for me and my friends liked them too! Now I know my friends are true friends and they won't treat me any different because I got sick. Today I went for a visit to Gregory Middle School and I got a big hug from some of my teachers and I have to admit I'm feeling great! I will do just about anything to go back to school and get back to normal! Sunday the Make-A-Wish people came to see if I had a wish they could grant. At first I wanted to go on a vacation with my whole family, but then when I thought about it, I decided that I would rather have my own puppy. A vacation doesn't last very long, but a puppy can be with you every day! I really want a Shih-Poo. It's half Shihtzu and half Poodle. It is SOOOOO cute! I really hope they grant my wish! Kaitlyn even told them what her wish would be, even though she didn't get sick! She wants to meet Miley Cyrus. That would be cool, too, but I still want a puppy. Last night the doorbell rang and Kaitlyn wouldn't answer it so I had to. There was Santa Claus! He just came by to wish us Merry Christmas and hopes that I feel better. It's really nice to know how many people are helping me get well. Thank you to everybody and I hope everybody has as good a Christmas as I'm going to have!
Love,
Bree
Note from Parents:
Our goal is to have Brianna return to school after the holiday break if only for a few hours a day and then eventually build to a full-time schedule. She is experiencing a little anxiety about returning to school. The swelling from the steroids is going down but we need to have patience. Part of her anxiety was reduced after she was surprised by a group of friends from school. Maddy and Camilla Ose invited Brianna and Kaitlyn over this past Sunday afternoon. Brianna was surprised to see Haley and all of her friends from school. Brianna has an extraordinary group of friends, a protective older brother (Eric-same school) and a sister (Haley-same school)who will be a huge support system when she returns. On our visit to Gregory Middle School, she admitted to Mrs. Binder (band instructor) that she is feeling, "Great!" Not good, but great! I asked her if being at the school makes her miss it and she said yes. I believe that she will do whatever it takes to return the first day back from break!
Sunday late afternoon we were visited by Brianna's Make-A-Wish team, Renee and Lissa. Brianna was interviewed and discussed how her two top wishes would be a puppy or a vacation with all of her family. When asked which one she would lean towards more she admitted a puppy. Since we returned from St. Jude, Brianna was asking daily if we could take her to pet stores so she could look at puppies. I think that after her experience with the therapy dogs at St. Jude she was convinced that a dog would be her number one wish. Ultimately, Brianna has wished for a puppy (she already had one picked out as she has her heart set on a Shih-Poo) and when I called Petland later that evening I found out that the puppy was still there. Petland and Make-A-wish are currently working on granting Brianna's wish which will take place the morning of December 31st. Last night there was a visit from Santa. Bob and I were not witness to this as I was taking part in an online volleyball training session while Bob and Eric were working on making holiday ornaments.
We will keep you updated throughout the holiday season, especially to let you know how her Make-A-Wish day was spent. We would like to wish everyone a blessed holiday season. The St. Jude commerical states, "Give thanks to the healthy children in your lives." and we ask that you pray for those who are not. Though we are home and Brianna is feeling great we would ask that you please continue to pray for her continued healing and for her to be blessed with God's mercy as He restores her to complete health. We also pray for all of the DIPG children and their families that they have the strength and courage to continue their journey with faith and hope. Please pray for all children with cancer that they may be blessed with God's grace and mercy.
Love,
Bree's Family
Monday, December 15, 2008
Sunday - December 14
Hi Everybody! I had a great weekend. The last time I was here at my Dad's house was when I went to the hospital and they found the tumor. This week I had a lot of time that I felt good and I got to laugh and play a lot. Kaitlyn is being really nice to me so we don't fight as much. My stepmom changed our room here and I really like it so I colored a lot and drew pictures on my dry erase board. Yesterday we went to see Grandma and Grandpa Spinello and then we went to see some people who work at Palmers. They told my I could come exercise in their gym any time I want! After that I ate a LOT of brocolli at dinner and then we watched Fred Clause. It was funny and I laughed a lot and played with Gianna. Today we are going to Grandma Mollos house and then back home to talk to the people from Make a Wish. I sure hope they grant me my wish! If they do I will get a puppy!
Love,
Bree
Note from parents:
We are in the midst of planning a few fundraisers so we will make sure keep doing updates as they are finalized. A fundraiser at Quigley's Irish Pub on the South side is starting to be planned today so keep your eyes out for that.
Thank you for stopping by and seeing what Brianna is up to. We really appreciate all of you that have kept her in your thoughts and prayers!
Brianna's family
Love,
Bree
Note from parents:
We are in the midst of planning a few fundraisers so we will make sure keep doing updates as they are finalized. A fundraiser at Quigley's Irish Pub on the South side is starting to be planned today so keep your eyes out for that.
Thank you for stopping by and seeing what Brianna is up to. We really appreciate all of you that have kept her in your thoughts and prayers!
Brianna's family
Wednesday - December 10
Home sweet home!
I am starting to get back to NORMAL. Now I can try to build up my strength and not be so tired all the time. I wake up, eat breakfast and then I have a tutor to help me with schoolwork until I can go back to regular school. Then I eat lunch, play and usually somebody comes by to visit. In the afternoon I get tired so I have to take a nap. Then I eat dinner, watch some TV and do my homework and get ready for bed. It's kind of hard to go to sleep right now cause I got used to Mom being in my room with me at Ronald McDonald house. She would watch a movie with me and then we would turn out the light. But now that I'm home it is different so Mom stays with me until I fall asleep. It's just a lot quieter at home but I know I'll get used to it again. I still have to take medicine but maybe pretty soon I won't have to.
Love to everybody!
Bree
Note from Parents:
Hopefully, Brianna will soon be able to be weaned off of her anxiety medication. However, it serves a dual purpose because it also serves as a back-up to her nausea medication. She has been fortunate enough not to have nausea as a side-effect. I am sure the prayers and the medication are serving her needs.
Brianna has a homebound instructor coming to work with her for 1 hour each day. Mrs. Romano is very nice and Brianna even has the energy to complete extra homework in the afternoons and evenings. Bob told her it is good to see her doing homework with her siblings...just as it was before we left. She is also enjoying the normal routine of playing with Haley and Kaitlyn and is looking forward to seeing her friends soon.
We have enjoyed visits from Uncle Jeff, Brendan, Aunt Jackie, Uncle Dave, J.J., Aunt Georgia, Grandma Close, Grandma Siemann, and Great Grandma and Grandpa. Everyone is thrilled to see that Brianna is feeling much better and has her personality back!
Thank you everyone for all of your support! Please continue to pray for Brianna's continued healing and all of the children fighting DIPG: Max, Kole, Keleigh, and Liam.
God Bless!
Brianna's Family
I am starting to get back to NORMAL. Now I can try to build up my strength and not be so tired all the time. I wake up, eat breakfast and then I have a tutor to help me with schoolwork until I can go back to regular school. Then I eat lunch, play and usually somebody comes by to visit. In the afternoon I get tired so I have to take a nap. Then I eat dinner, watch some TV and do my homework and get ready for bed. It's kind of hard to go to sleep right now cause I got used to Mom being in my room with me at Ronald McDonald house. She would watch a movie with me and then we would turn out the light. But now that I'm home it is different so Mom stays with me until I fall asleep. It's just a lot quieter at home but I know I'll get used to it again. I still have to take medicine but maybe pretty soon I won't have to.
Love to everybody!
Bree
Note from Parents:
Hopefully, Brianna will soon be able to be weaned off of her anxiety medication. However, it serves a dual purpose because it also serves as a back-up to her nausea medication. She has been fortunate enough not to have nausea as a side-effect. I am sure the prayers and the medication are serving her needs.
Brianna has a homebound instructor coming to work with her for 1 hour each day. Mrs. Romano is very nice and Brianna even has the energy to complete extra homework in the afternoons and evenings. Bob told her it is good to see her doing homework with her siblings...just as it was before we left. She is also enjoying the normal routine of playing with Haley and Kaitlyn and is looking forward to seeing her friends soon.
We have enjoyed visits from Uncle Jeff, Brendan, Aunt Jackie, Uncle Dave, J.J., Aunt Georgia, Grandma Close, Grandma Siemann, and Great Grandma and Grandpa. Everyone is thrilled to see that Brianna is feeling much better and has her personality back!
Thank you everyone for all of your support! Please continue to pray for Brianna's continued healing and all of the children fighting DIPG: Max, Kole, Keleigh, and Liam.
God Bless!
Brianna's Family
Monday, December 8, 2008
Monday - December 8
Note from Brianna's Dad and Stepmom:
As I drove home from Memphis with Kaitlyn, my mind had gone back over the journey from day one when we had recieved the diagnosis. This diagnosis had us really thrown us for a loop and was something that we were certainly not prepared for. And as I thought about what got us through this time during her radiation treatment and being so far away from home I was reminded again that it was all of you that had kept us in your thoughts and prayers that helped get us through it all. We thank you for that as it was comforting to see how many people that Brianna has touched through this difficult time in our lives.
I would like to take the time to thank some people that were instrumental in helping Maria and I (as well as Brianna) get through these tough times. I would especially like to thank my parents. My mom and Mike found the time to make the trip down to Memphis to visit Brianna and take her to Corky's which has some phenomenal Memphis BBQ. And in the evening the kids were able to swim at their hotel. Thanks Mom and Mike for coming down!
My Dad and my stepmother Sue and my sister's also found time in their busy schedules to come down and visit Brianna a couple of times. Grandma and Grandpa Sharp brought Brianna her first IPOD and she was in love with that thing from day 1. She still listens to it everyday! My sisters Faith and Julie each came down and brought Brianna some things to help her pass her time. Brianna and Kaitlyn love spending time with them as they have their "nerd academy" which I am told I am a member of (its an inside joke I won't understand I am sure).
I would also like to thank my Aunt Michelle for her love and support and sending Brianna and Kaitlyn things to help them through this difficult time as well as sending Jennifer some great inspirational books to read as those helped her through some hard times while in Memphis as well. Also a shout out to my Aunt Kate and Aunt Shiela who have also helped us through a very difficult time by sending some gift cards and such to help get through this rough time as well. My cousin Kelly also sent Bree some iTunes gift cards and Bree put those to good use! My sister in law Lisa and her husband Brad have also helped tremendously as well, without them I would not be able to take my girls to Florida next month! They bought us airplane tickets so we could watch Madison compete in Disney World!! I am fortunate to have the family that I have and I can't really put into words how grateful I am but hopefully I can get the chance to see you all over the holidays so that I can!
I also want to thank my work family! From the time I recieved the diagnosis, they have been a great help in getting through the first few days. The "Brianna" team has been nothing short of amazing. They created the www.curebrianna.com website, the content and picture uploads to the website. They also helped with the Christine Magnuson visit which was really cool and coordinated the Olympic flag and other things Bree got from many Olympic athletes! So thanks!
I would also like to thank my wife's parents as they have really helped with some painting and home improvements in the home, including a little renovation and redoing of the girls' room here at my house as well! And finally I want to thank my wife for holding down the fort here in Chicago while I was down in Memphis. She is a tremendous partner and is my rock and support on a daily basis and I could not possibly get through this without her.
I hope everyone has a wonderful holiday season! We are preparing for Christmas just as you all are but find this holiday season especially unique because we have the great gift of all of our family and friends and we could not thank you all enough for what you have done for our families and especially for Brianna. I hope to put a holiday video clip of Brianna on the www.curebrianna.com website sometime soon here for everyone to see!
Have a great holiday and we will keep you updated on everything with Brianna throughout the holiday season!
Love,
Matt and Maria
As I drove home from Memphis with Kaitlyn, my mind had gone back over the journey from day one when we had recieved the diagnosis. This diagnosis had us really thrown us for a loop and was something that we were certainly not prepared for. And as I thought about what got us through this time during her radiation treatment and being so far away from home I was reminded again that it was all of you that had kept us in your thoughts and prayers that helped get us through it all. We thank you for that as it was comforting to see how many people that Brianna has touched through this difficult time in our lives.
I would like to take the time to thank some people that were instrumental in helping Maria and I (as well as Brianna) get through these tough times. I would especially like to thank my parents. My mom and Mike found the time to make the trip down to Memphis to visit Brianna and take her to Corky's which has some phenomenal Memphis BBQ. And in the evening the kids were able to swim at their hotel. Thanks Mom and Mike for coming down!
My Dad and my stepmother Sue and my sister's also found time in their busy schedules to come down and visit Brianna a couple of times. Grandma and Grandpa Sharp brought Brianna her first IPOD and she was in love with that thing from day 1. She still listens to it everyday! My sisters Faith and Julie each came down and brought Brianna some things to help her pass her time. Brianna and Kaitlyn love spending time with them as they have their "nerd academy" which I am told I am a member of (its an inside joke I won't understand I am sure).
I would also like to thank my Aunt Michelle for her love and support and sending Brianna and Kaitlyn things to help them through this difficult time as well as sending Jennifer some great inspirational books to read as those helped her through some hard times while in Memphis as well. Also a shout out to my Aunt Kate and Aunt Shiela who have also helped us through a very difficult time by sending some gift cards and such to help get through this rough time as well. My cousin Kelly also sent Bree some iTunes gift cards and Bree put those to good use! My sister in law Lisa and her husband Brad have also helped tremendously as well, without them I would not be able to take my girls to Florida next month! They bought us airplane tickets so we could watch Madison compete in Disney World!! I am fortunate to have the family that I have and I can't really put into words how grateful I am but hopefully I can get the chance to see you all over the holidays so that I can!
I also want to thank my work family! From the time I recieved the diagnosis, they have been a great help in getting through the first few days. The "Brianna" team has been nothing short of amazing. They created the www.curebrianna.com website, the content and picture uploads to the website. They also helped with the Christine Magnuson visit which was really cool and coordinated the Olympic flag and other things Bree got from many Olympic athletes! So thanks!
I would also like to thank my wife's parents as they have really helped with some painting and home improvements in the home, including a little renovation and redoing of the girls' room here at my house as well! And finally I want to thank my wife for holding down the fort here in Chicago while I was down in Memphis. She is a tremendous partner and is my rock and support on a daily basis and I could not possibly get through this without her.
I hope everyone has a wonderful holiday season! We are preparing for Christmas just as you all are but find this holiday season especially unique because we have the great gift of all of our family and friends and we could not thank you all enough for what you have done for our families and especially for Brianna. I hope to put a holiday video clip of Brianna on the www.curebrianna.com website sometime soon here for everyone to see!
Have a great holiday and we will keep you updated on everything with Brianna throughout the holiday season!
Love,
Matt and Maria
Sunday - December 7
I am finally home! When we got here my first surprise was that my bedroom was painted aqua, just like a tropical beach! I have a lighted palm tree and ornaments, a beach chair, shark teeth, grass skirts, surf board, signs and fish and all kinds of stuff! I LOVE IT! Thank you to everybody who helped do all the work.
Love,
Bree
Note from Parents:
We had a couple of obstacles to overcome in our trip home, but we made it and enjoyed our first weekend resting at home. In a previous update we thanked everyone in Memphis. This update is to thank the home team in Naperville. Matt will post an update tomorrow thanking his team.
Thank you to the White family for painting Brianna's room a beautiful Jamaican aqua color. It's perfect for her new tropical beach theme. Thank you Bob, Eric, and Haley for moving furniture and getting the room ready for painting. Thank you Aunt Pat, Uncle John, Dan, Aunt Jackie, & Grandma Close for beautifully decorating Brianna's room. Uncle John even suggested removing the dresser and adding a Tiki Bar. (Maybe give her at least a few more years!) She loved her new room and is very grateful to all who worked hard putting it together. Kaitlyn is planning on her theme and it appears she may go in the opposite direction as she suggested an arctic theme (polar bears, penguins, northern lights, snow, ice, skiing, etc!) If you get too warm in Brianna's room you can just head over to Kaitlyn's to cool down! Haley will take her time thinking about what theme she will go with...she always has a difficult time making up her mind! :-)
Bob, Eric, Haley & Kaitlyn met us at the airport. We thoroughly enjoyed the car ride home as Brianna was giddy with excitement...talking and laughing non-stop. When we turned into our subdivision we noticed that every single tree had blue, pink, and green ribbons tied on them (Brianna's three favorite colors). The Ose family organized a "ribbon team" so Brianna could see the love and support from all of our neighbors.
Bob and I would like to personally thank all of the neighbors for their help over the last couple of months. Jennifer Charboneau organized a meal team where many people provided Bob, Eric, Haley and Kaitlyn with dinners while we were gone.
Thank you Gina (Eric & Haley's mom) for providing a meal and also helping out by taking Haley and Kaitlyn to see the HSM3 movie so Bob and Eric wouldn't have to endure that torture!
Thank you to Max's and Brianna's supporters who coordinated the ornament fundraiser. The ornaments are beautiful!! If you missed out so far they will still be selling/taking orders at the 95th Street YMCA tomorrow.
Thank you to our extended Siemann family. Georgia, thank you for your spiritual support in getting us through the past two months. Bill and Connie for coming to visit and for taking care of Bob and kids while Brianna and I were gone. Mike, Steve, and Amy for offering any help and support when needed.
Thank you to Gregory Middle School teachers, parents, and students for their unbelievable support for Brianna, Eric, and Haley! Thank you for the wonderful cards and letters of encouragement for Brianna. Thank you 7th grade teachers for the holiday giftcard for our family.
Thank you to Brianna's friends and their parents for their love and support. Brianna has a remarkable group of friends that love her, support her, and protect her through everything. Please know that Bob and I feel very blessed to have the support of their families as well. Edwards', Didiers', Binkus', Oses', Whites', Riveros', and many more...thank you for everything!!
Thank you Eric, Haley, & Kaitlyn for welcoming Brianna home, making her feel loved, and helping her get back into her routine of playing and having fun. Saturday morning, Haley and Brianna decided to step out on the patio in their robes and winter boots to see if it was really cold and if it was actually snowing. When Bob found out he immediately ordered them back into the house...but only after taking a picture!
As we settle back in the comforts of our home and prepare for Brianna's return to school, we ask that you continue praying for her, that she continue to heal and that the tumor continues to shrink. Radiation will continue to work for another 3 months...so we will pray for the tumor to continue to shrink and to go into remission. The last MRI showed an overall 20% reduction since our arrival. (That number is only a guess by doctors as it is impossible to give an exact number. The doctors have to confer with the radiologists and others to measure a tmour that is not a perfect shape. The doctor said that different areas are shrinking at different rates.)
Please continue to pray for Brianna, Max, Kole, and Keleigh who are all fighting DIPG. Please pray for their complete healing, that they may all experience God's grace and mercy. We will enjoy this holiday season more than ever as we have grown in our faith and have been blessed with an outpouring of friendship and love from a community greater than one could ever imagine! God Bless!!
Brianna's Family
Love,
Bree
Note from Parents:
We had a couple of obstacles to overcome in our trip home, but we made it and enjoyed our first weekend resting at home. In a previous update we thanked everyone in Memphis. This update is to thank the home team in Naperville. Matt will post an update tomorrow thanking his team.
Thank you to the White family for painting Brianna's room a beautiful Jamaican aqua color. It's perfect for her new tropical beach theme. Thank you Bob, Eric, and Haley for moving furniture and getting the room ready for painting. Thank you Aunt Pat, Uncle John, Dan, Aunt Jackie, & Grandma Close for beautifully decorating Brianna's room. Uncle John even suggested removing the dresser and adding a Tiki Bar. (Maybe give her at least a few more years!) She loved her new room and is very grateful to all who worked hard putting it together. Kaitlyn is planning on her theme and it appears she may go in the opposite direction as she suggested an arctic theme (polar bears, penguins, northern lights, snow, ice, skiing, etc!) If you get too warm in Brianna's room you can just head over to Kaitlyn's to cool down! Haley will take her time thinking about what theme she will go with...she always has a difficult time making up her mind! :-)
Bob, Eric, Haley & Kaitlyn met us at the airport. We thoroughly enjoyed the car ride home as Brianna was giddy with excitement...talking and laughing non-stop. When we turned into our subdivision we noticed that every single tree had blue, pink, and green ribbons tied on them (Brianna's three favorite colors). The Ose family organized a "ribbon team" so Brianna could see the love and support from all of our neighbors.
Bob and I would like to personally thank all of the neighbors for their help over the last couple of months. Jennifer Charboneau organized a meal team where many people provided Bob, Eric, Haley and Kaitlyn with dinners while we were gone.
Thank you Gina (Eric & Haley's mom) for providing a meal and also helping out by taking Haley and Kaitlyn to see the HSM3 movie so Bob and Eric wouldn't have to endure that torture!
Thank you to Max's and Brianna's supporters who coordinated the ornament fundraiser. The ornaments are beautiful!! If you missed out so far they will still be selling/taking orders at the 95th Street YMCA tomorrow.
Thank you to our extended Siemann family. Georgia, thank you for your spiritual support in getting us through the past two months. Bill and Connie for coming to visit and for taking care of Bob and kids while Brianna and I were gone. Mike, Steve, and Amy for offering any help and support when needed.
Thank you to Gregory Middle School teachers, parents, and students for their unbelievable support for Brianna, Eric, and Haley! Thank you for the wonderful cards and letters of encouragement for Brianna. Thank you 7th grade teachers for the holiday giftcard for our family.
Thank you to Brianna's friends and their parents for their love and support. Brianna has a remarkable group of friends that love her, support her, and protect her through everything. Please know that Bob and I feel very blessed to have the support of their families as well. Edwards', Didiers', Binkus', Oses', Whites', Riveros', and many more...thank you for everything!!
Thank you Eric, Haley, & Kaitlyn for welcoming Brianna home, making her feel loved, and helping her get back into her routine of playing and having fun. Saturday morning, Haley and Brianna decided to step out on the patio in their robes and winter boots to see if it was really cold and if it was actually snowing. When Bob found out he immediately ordered them back into the house...but only after taking a picture!
As we settle back in the comforts of our home and prepare for Brianna's return to school, we ask that you continue praying for her, that she continue to heal and that the tumor continues to shrink. Radiation will continue to work for another 3 months...so we will pray for the tumor to continue to shrink and to go into remission. The last MRI showed an overall 20% reduction since our arrival. (That number is only a guess by doctors as it is impossible to give an exact number. The doctors have to confer with the radiologists and others to measure a tmour that is not a perfect shape. The doctor said that different areas are shrinking at different rates.)
Please continue to pray for Brianna, Max, Kole, and Keleigh who are all fighting DIPG. Please pray for their complete healing, that they may all experience God's grace and mercy. We will enjoy this holiday season more than ever as we have grown in our faith and have been blessed with an outpouring of friendship and love from a community greater than one could ever imagine! God Bless!!
Brianna's Family
Thursday - December 4
Start fast, finish faster. Start strong, finish stronger. That's exactly what I did! Today I crossed the finish line! Operation Radiation...Mission Complete!! The last MRI is over and we should know the results soon. Even after the last MRI I was still a little nervous that something might happen to keep me from going home tomorrow. Mom asked everybody to pray for a good test and it worked because she said the numbers were low. I was so excited I gave the BIGGEST smile! When I was waking up after the MRI the nurse asked who was going home tomorrow and all I could do was grin. And then I got more news because the doctors said I don't have to come back down here until February!!! I thought I would have to come back next month but they said the tests could be done at home! So I DO get to go home after all. I'll have school at home for a little while and some physical therapy and then - BACK TO SCHOOL and all my FRIENDS!!!
THANK YOU EVERYBODY!
Love,
Bree
Note from Mom:
I asked everyone yesterday to pray for a good EKG reading as that might have been one thing that would prevent us from making it home. Once again, our prayers were answered. The doctors told us today that the official reading was 436!! Yesterday we believed that number was 460!! I know God is answering our prayers! Thanks be to God! When the doctors told us everything is great and assured us we would be leaving tomorrow, Brianna was so excited she could not hide her biggest smile! As Brianna was waking up from sedation from her two-hour MRI the recovery nurse asked, "Who is going home tomorrow?" The nurse said Brianna gave her a huge smile. We got an early Christmas present as the doctors told us we do not need to return until February. Her December and January appointments and tests can be done back home!! She will return home, continue with physical therapy and home-schooling, and eventually return to school sometime after the holidays. She will most liekly return on a part-time basis and work up her endurance to return full-time.
Today we would like to thank numerous people at St. Jude for the outstanding care and compassion on Brianna's behalf. Dr. Baker & Dr. Piya are Brianna's neuro-oncologist physicians and they are absolutely the most caring men. Some family members were able to meet Dr. Baker and in their brief meetings were able to tell just how special he is. Nurse Dori from E-clinic and nurse Crystal were very sweet and they both work incredibly hard at making the children feel safe and cared for. Childlife Specialists Amy and Krystiana did an excellent job working with Brianna, especially early in our treatment when Brianna was afraid she would never make it home again and struggled with homesickness throughout. Amy and Krystiana were able to provide Brianna with activities an projects to keep her spirits up. Amy also did a wonderful job keeping mom's spirits up as well! Kimberly had a rough time with Brianna when she started working with her on physical therapy. When Brianna started therapy the side effects from the medication had her in no mood to do any activity and she would constantly complain about having to go. Kimberly is excellent and was able to see Brianna's real personality emerge and has helped Brianna make tremendous progress. Dr. Merchant is Brianna's radiation physician and he is also a wonderful man. He appeared on the Today show Thanksgiving morning when he was interviewed about the type of radiation therapy patients are receiving at St. Jude. There are way too many people to list individually so I will shout out a huge thank you to the ladies in patient registration that we had to meet every single morning for a new armband, patient services, radiation technicians, all of the triage nurses, schedulers, receptionists, shuttle drivers, and staff at Ronald McDonald House.
We would also like to thank Lori, Scottie, and Kole along with Gary, Valerie, and Keleigh...DIPG families and RMH neighbors who we have become part of our family. Everyone we have met at St. Jude and Ronald McDonald House will forever hold a very special place in our hearts and will forever be in our prayers. It is an unbelievable experience to be surrounded by an overwhelming number of people who devote all their time and efforts to care for children like Brianna. Throughout our stay and through all of the appointments and treatments we felt as though Brianna was the only patient at St. Jude. Everyone in every department works so hard to make sure each child is cared for in a very special way. Thank you St. Jude!!
Thanks be to God! We will continue to pray for Brianna's complete healing! We will also continue to pray for Max, Kole, and Keleigh along with all children with cancer, and that their families have the stength and courage to endure the difficult road.
I will pack my laptop and the next time I post an update I will be sitting at my desk back home!
Love and Prayers,
Brianna's Family
THANK YOU EVERYBODY!
Love,
Bree
Note from Mom:
I asked everyone yesterday to pray for a good EKG reading as that might have been one thing that would prevent us from making it home. Once again, our prayers were answered. The doctors told us today that the official reading was 436!! Yesterday we believed that number was 460!! I know God is answering our prayers! Thanks be to God! When the doctors told us everything is great and assured us we would be leaving tomorrow, Brianna was so excited she could not hide her biggest smile! As Brianna was waking up from sedation from her two-hour MRI the recovery nurse asked, "Who is going home tomorrow?" The nurse said Brianna gave her a huge smile. We got an early Christmas present as the doctors told us we do not need to return until February. Her December and January appointments and tests can be done back home!! She will return home, continue with physical therapy and home-schooling, and eventually return to school sometime after the holidays. She will most liekly return on a part-time basis and work up her endurance to return full-time.
Today we would like to thank numerous people at St. Jude for the outstanding care and compassion on Brianna's behalf. Dr. Baker & Dr. Piya are Brianna's neuro-oncologist physicians and they are absolutely the most caring men. Some family members were able to meet Dr. Baker and in their brief meetings were able to tell just how special he is. Nurse Dori from E-clinic and nurse Crystal were very sweet and they both work incredibly hard at making the children feel safe and cared for. Childlife Specialists Amy and Krystiana did an excellent job working with Brianna, especially early in our treatment when Brianna was afraid she would never make it home again and struggled with homesickness throughout. Amy and Krystiana were able to provide Brianna with activities an projects to keep her spirits up. Amy also did a wonderful job keeping mom's spirits up as well! Kimberly had a rough time with Brianna when she started working with her on physical therapy. When Brianna started therapy the side effects from the medication had her in no mood to do any activity and she would constantly complain about having to go. Kimberly is excellent and was able to see Brianna's real personality emerge and has helped Brianna make tremendous progress. Dr. Merchant is Brianna's radiation physician and he is also a wonderful man. He appeared on the Today show Thanksgiving morning when he was interviewed about the type of radiation therapy patients are receiving at St. Jude. There are way too many people to list individually so I will shout out a huge thank you to the ladies in patient registration that we had to meet every single morning for a new armband, patient services, radiation technicians, all of the triage nurses, schedulers, receptionists, shuttle drivers, and staff at Ronald McDonald House.
We would also like to thank Lori, Scottie, and Kole along with Gary, Valerie, and Keleigh...DIPG families and RMH neighbors who we have become part of our family. Everyone we have met at St. Jude and Ronald McDonald House will forever hold a very special place in our hearts and will forever be in our prayers. It is an unbelievable experience to be surrounded by an overwhelming number of people who devote all their time and efforts to care for children like Brianna. Throughout our stay and through all of the appointments and treatments we felt as though Brianna was the only patient at St. Jude. Everyone in every department works so hard to make sure each child is cared for in a very special way. Thank you St. Jude!!
Thanks be to God! We will continue to pray for Brianna's complete healing! We will also continue to pray for Max, Kole, and Keleigh along with all children with cancer, and that their families have the stength and courage to endure the difficult road.
I will pack my laptop and the next time I post an update I will be sitting at my desk back home!
Love and Prayers,
Brianna's Family
Wednesday - December 3
Tomorrow is my last radiation treatment - YAY! Then I have one more MRI for 2 hours - yuck. But at least I get to sleep through it. Dad and my sister Kaitlynn are going home tomorrow and they are taking a LOT of my stuff with them. On Friday I have a couple of appointments at the hospital and then I get to leave here at 3pm. I am Finally on my way home. Thank you to everybody for praying for me and visiting and doing all the stuff you did to help me get better!
Love,
Bree
Note from Parents:
Brianna has made it to her last radiation treatment. 8:30 AM will be treatment #30 and she will then follow up with another 2 hour MRI. We will also meet with the doctors tomorrow to finalize any/all paperwork and discuss all that we have coming up with the future treatment and visits. Everything looks good but we are a little concerned that her EKG score is once again above 450. The last 3 EKG test are 460 or higher. Still normal for her age, but the drug company in charge of the protocol wants the number to be under 450. Please pray that tomorrow and/or Friday's EKG is below 450. We don't want anything to hold us up from making it home Friday night!! We don't know if this would hold us back, but we would feel better knowing that the score is back in range for the protocol. We are sure the doctor visit will provide us with more insight.
Matt and Kaitlyn will be heading home tomorrow morning. Of course we are sending as much stuff home as possible yet still leaving enough to get by for two more days. We have a long day ahead of us tomorrow and we even have an appointment or two Friday morning. We called for a shuttle to pick us up at 3 PM.
Thank you for all of your kindness and generosity! Hopefully, this is one of the last updates we type from the RMH. We will continue to keep you posted and appreciate your continued prayers! God Bless!
Brianna's Family
Love,
Bree
Note from Parents:
Brianna has made it to her last radiation treatment. 8:30 AM will be treatment #30 and she will then follow up with another 2 hour MRI. We will also meet with the doctors tomorrow to finalize any/all paperwork and discuss all that we have coming up with the future treatment and visits. Everything looks good but we are a little concerned that her EKG score is once again above 450. The last 3 EKG test are 460 or higher. Still normal for her age, but the drug company in charge of the protocol wants the number to be under 450. Please pray that tomorrow and/or Friday's EKG is below 450. We don't want anything to hold us up from making it home Friday night!! We don't know if this would hold us back, but we would feel better knowing that the score is back in range for the protocol. We are sure the doctor visit will provide us with more insight.
Matt and Kaitlyn will be heading home tomorrow morning. Of course we are sending as much stuff home as possible yet still leaving enough to get by for two more days. We have a long day ahead of us tomorrow and we even have an appointment or two Friday morning. We called for a shuttle to pick us up at 3 PM.
Thank you for all of your kindness and generosity! Hopefully, this is one of the last updates we type from the RMH. We will continue to keep you posted and appreciate your continued prayers! God Bless!
Brianna's Family
Wednesday, December 3, 2008
Tuesday - December 2
Yeah! Only two more days left! I bet Uncle Jeff would remind me of his cross country saying. "start fast, finish faster, start strong, finish stronger." I am finally feeling like my old self! I think I get to stop the medicine soon and that's good because it made my whole body swell up and I don't look like me right now. The doctors say that as soon as I get better and all the medicine is out of my body my muscles will come back and I won't be swollen any more. That's good news for sure! I am so excited to go home so I can sit by the fireplace and watch TV like I used to on movie nights. Kaitlyn and I got to visit with the therapy dogs today. They are golden retrievers and their names are Tank and Cooper. They both sat with their heads in my lap. They are amazing. It's like they know I have been sick. I was glad to see them one more time before I go home. That's all for now! I just hope that this cold I have won't keep me from going home, but Mom is giving me lots of stuff to drink and keeps telling me that a cold isn't enough to make me have to stay any longer.
Love,
Bree
Note from Parents:
Brianna has gone from 16 mg/day on the steroid medication down to .5 mg/day!! Hopefully, by Friday she will be completely weaned from the steroid medication and can focus on rebuilding her muscle mass and strength as well as enjoying being home for the holiday season. Brianna mentioned three times today that she is so excited to come home. She asked if we can have a fire and watch t.v. I don't think that will be a problem! We have been looking forward to the first full day back home with our family and enjoying our movie nights in front of a fire. We will sleep in, decorate the house, and undoubtedly enjoy a stream of visitors for a few days. I warned Brianna previously, "Be careful what you wish for!" As much as she has been homesick and wishing she were home, she is going to be overwhelmed by all of the people who will want to see her. That is a wonderful problem to have!! We can't wait!! I also took Brianna and Kaitlyn to the Chapel for communion. We enjoyed a moment to reflect, pray, and thank God for all of our blessings.
Brianna is fighting a bad cold and is trying to rest and drink plenty of fluids in an attempt to get back to normal by the time we return home. She is very nervous that her cold will keep her from being able to make it home Friday night. We continue to pray for her to continue her progress and we assure her that a cold will not keep her from flying home on Friday night.
As we prepare to come home we would like to thank everyone for their continued support and for their unending prayers. We grow in our faith everyday and gain courage and strength from all the kind words and expressions of love and support. Brianna inspires us every day with her courage. Despite everything she is going through she continues to show everyone that she cares and she is always in tune with others' feelings. She even wrote an note to Kaitlyn where she told her that, "You are the best sister ever and I love you!" The two of them still fight and tease each other (though not as frequently) but Brianna's note and Kaitlyn's immediate concern for every cough or sneeze from Brianna makes our hearts melt.
God bless! The blood of the lamb will heal Brianna. Have faith and be patient as God will heal in His own time.
Brianna's Family
Love,
Bree
Note from Parents:
Brianna has gone from 16 mg/day on the steroid medication down to .5 mg/day!! Hopefully, by Friday she will be completely weaned from the steroid medication and can focus on rebuilding her muscle mass and strength as well as enjoying being home for the holiday season. Brianna mentioned three times today that she is so excited to come home. She asked if we can have a fire and watch t.v. I don't think that will be a problem! We have been looking forward to the first full day back home with our family and enjoying our movie nights in front of a fire. We will sleep in, decorate the house, and undoubtedly enjoy a stream of visitors for a few days. I warned Brianna previously, "Be careful what you wish for!" As much as she has been homesick and wishing she were home, she is going to be overwhelmed by all of the people who will want to see her. That is a wonderful problem to have!! We can't wait!! I also took Brianna and Kaitlyn to the Chapel for communion. We enjoyed a moment to reflect, pray, and thank God for all of our blessings.
Brianna is fighting a bad cold and is trying to rest and drink plenty of fluids in an attempt to get back to normal by the time we return home. She is very nervous that her cold will keep her from being able to make it home Friday night. We continue to pray for her to continue her progress and we assure her that a cold will not keep her from flying home on Friday night.
As we prepare to come home we would like to thank everyone for their continued support and for their unending prayers. We grow in our faith everyday and gain courage and strength from all the kind words and expressions of love and support. Brianna inspires us every day with her courage. Despite everything she is going through she continues to show everyone that she cares and she is always in tune with others' feelings. She even wrote an note to Kaitlyn where she told her that, "You are the best sister ever and I love you!" The two of them still fight and tease each other (though not as frequently) but Brianna's note and Kaitlyn's immediate concern for every cough or sneeze from Brianna makes our hearts melt.
God bless! The blood of the lamb will heal Brianna. Have faith and be patient as God will heal in His own time.
Brianna's Family
Tuesday, December 2, 2008
Monday - December 1 - MY LAST WEEK!!!
Finally I only have a few days left. It was kind of sad when everybody started going home but then Dad reminded me that in just a few days I will be back home and I can sleep in my own bed! That made me feel a lot better.
Note from parents.:
I think Brianna is starting to really see that her time to go back home is just about finally here! I think it really hit her when she was realizing that her visitors from the weekend were starting to head back. Maria and the kids went back early Saturday and she started to get a little sad about that and then Bob left but quickly reminded Bree that she was close to the end of radiation and that there was nothing to worry about and that she would be in her own home on her own couch and able to sleep on her own bed soon! Then Bridget, Bernadette and Lauren said their goodbyes Saturday night because they were leaving early to try and beat the bad weather that was coming Chicago's way on Sunday.
Once all the visitors were gone Jennifer and I reminded her of all that she has accomplished so far and that the radiation finish line was within sight! Brianna was beginning to come down with a pretty good cold later Saturday and we took her to the Medicine room at St. Jude to get checked out. The med room is kind of the equivalent of a conveinent care back home. The doctor checked her out and told us to come back Sunday morning to get a swab test done of her nose and throat. The following morning we did just that and the tests found that it is just a cold at this point. It has progressed a little more into her chest but I went to the store today to get her some cold medicine.
Brianna has done an amazing job since first arriving in Mid October to start this journey and has come so far! The love and support from all of you has definitely helped her and we thank you for all your continued support and prayers. We are proud of Brianna and couldn't be luckier parents to have her as our daughter. If we could clone Brianna the world would be a better place for sure!
As parents we are charged with caring for and teaching our children everything from tying their shoes to walking and everything else but I must say that I have learned alot from Brianna during this journey. She has taught me what it means to have grace and courage even when faced with a really difficult challenge. We all have challenges in everyday life but I think I will reflect on these last couple months everytime I am challenged with something that I feel is impossible. I think Brianna has taught alot of us what the true meaning of courage is.
I will be heading back to Chicago with Kaitlyn on Thursday morning and hope that she isn't bouncing off the walls during our drive! Brianna and Jennifer are still set to arrive back in Chicago late Friday evening. Our Make a Wish meeting is scheduled for the afternoon of December 14th and we will keep you all updated on the progress of that as well!
Thank you all again for your love and support and caring during these difficult times for our family. Your support has helped but the wind at Brianna's back as she is ready to cross this radiation finish line!
Gratefully yours,
Bree's Family
Note from parents.:
I think Brianna is starting to really see that her time to go back home is just about finally here! I think it really hit her when she was realizing that her visitors from the weekend were starting to head back. Maria and the kids went back early Saturday and she started to get a little sad about that and then Bob left but quickly reminded Bree that she was close to the end of radiation and that there was nothing to worry about and that she would be in her own home on her own couch and able to sleep on her own bed soon! Then Bridget, Bernadette and Lauren said their goodbyes Saturday night because they were leaving early to try and beat the bad weather that was coming Chicago's way on Sunday.
Once all the visitors were gone Jennifer and I reminded her of all that she has accomplished so far and that the radiation finish line was within sight! Brianna was beginning to come down with a pretty good cold later Saturday and we took her to the Medicine room at St. Jude to get checked out. The med room is kind of the equivalent of a conveinent care back home. The doctor checked her out and told us to come back Sunday morning to get a swab test done of her nose and throat. The following morning we did just that and the tests found that it is just a cold at this point. It has progressed a little more into her chest but I went to the store today to get her some cold medicine.
Brianna has done an amazing job since first arriving in Mid October to start this journey and has come so far! The love and support from all of you has definitely helped her and we thank you for all your continued support and prayers. We are proud of Brianna and couldn't be luckier parents to have her as our daughter. If we could clone Brianna the world would be a better place for sure!
As parents we are charged with caring for and teaching our children everything from tying their shoes to walking and everything else but I must say that I have learned alot from Brianna during this journey. She has taught me what it means to have grace and courage even when faced with a really difficult challenge. We all have challenges in everyday life but I think I will reflect on these last couple months everytime I am challenged with something that I feel is impossible. I think Brianna has taught alot of us what the true meaning of courage is.
I will be heading back to Chicago with Kaitlyn on Thursday morning and hope that she isn't bouncing off the walls during our drive! Brianna and Jennifer are still set to arrive back in Chicago late Friday evening. Our Make a Wish meeting is scheduled for the afternoon of December 14th and we will keep you all updated on the progress of that as well!
Thank you all again for your love and support and caring during these difficult times for our family. Your support has helped but the wind at Brianna's back as she is ready to cross this radiation finish line!
Gratefully yours,
Bree's Family
Thanksgiving Weekend
It has been really great to have so much of my family with me in Memphis. I started to cry when Bridget and Bernadette and Lauren got here on Friday. They got to go on a tour of Ronald McDonald house and Bridget made a special dinner for me with two of my favorites - spinach and broccoli- YUM! Bridget is going to cooking school and is learning how to make special healthy food for me. She even fixed a fresh pomegranate. After dinner we rode a carriage and went to a place called Silky O'Sullivans for something to drink and a snack. I was really tired cause we have done a lot of stuff this week so I went back to go to bed.
Note from Parents:
Bob and I took our time enjoying Beale Street with Lauren and Bernadette. When we returned to the hotel Kaitlyn still had energy to burn so she went swimming again.
Everyone met for breakfast at the RMH and Maria and kids said goodbye to Brianna and headed back home. Bob stayed until the afternoon as we needed to load his truck with as many boxes as possible. The girls and I will be living out of suitcases and with just enough activities to keep us entertained for the next 6 days. I can't believe we have less than 1 week remaining!! Radiation treatment ends on Thursday and Brianna also has another 2 hour MRI that day.
Brianna enjoyed today by spending time with Kaitlyn, Bridget, Bernadette, and Lauren playing a game, playing cards, watching a movie. My three very generous nieces (three broke college students) treated me, Matt and the girls to dinner. We ordered in so we could take full advantage of our relaxing day at the RMH. We are very grateful to them for making the long road trip with limited budgets. They are all sweethearts and it is easy to see why Brianna and Kaitlyn love them so much. They will leave tomorrow morning to head back home.
Finally, I have received word that Brianna's bedroom is finally complete! Thank you to the White family for having her room painted her favorite color (Jamaican aqua) and to Aunt Pat, Uncle John, Aunt Jackie, Grandma Close, Bob, Dan, and others who moved furniture, purchased items, and decorated her room to turn it into a real tropical, beach theme. We have only been planning her bedroom for over a year! It always seemed like we could never find a good time to get it all done! So thank you to everyone who helped make it happen!! We are so appreciative. I hear there are palm trees, surfboard, beach chair, grass bedskirt and valance, themed lamps, and much more. Knowing the talents of my mother, sister and aunt I can only imagine how spectacular her new bedroom will be. I can't wait for Brianna to see it!!
Let the countdown begin! Love to all and thank you for all of your prayers and support! God Bless!
Bree's Family
Note from Parents:
Bob and I took our time enjoying Beale Street with Lauren and Bernadette. When we returned to the hotel Kaitlyn still had energy to burn so she went swimming again.
Everyone met for breakfast at the RMH and Maria and kids said goodbye to Brianna and headed back home. Bob stayed until the afternoon as we needed to load his truck with as many boxes as possible. The girls and I will be living out of suitcases and with just enough activities to keep us entertained for the next 6 days. I can't believe we have less than 1 week remaining!! Radiation treatment ends on Thursday and Brianna also has another 2 hour MRI that day.
Brianna enjoyed today by spending time with Kaitlyn, Bridget, Bernadette, and Lauren playing a game, playing cards, watching a movie. My three very generous nieces (three broke college students) treated me, Matt and the girls to dinner. We ordered in so we could take full advantage of our relaxing day at the RMH. We are very grateful to them for making the long road trip with limited budgets. They are all sweethearts and it is easy to see why Brianna and Kaitlyn love them so much. They will leave tomorrow morning to head back home.
Finally, I have received word that Brianna's bedroom is finally complete! Thank you to the White family for having her room painted her favorite color (Jamaican aqua) and to Aunt Pat, Uncle John, Aunt Jackie, Grandma Close, Bob, Dan, and others who moved furniture, purchased items, and decorated her room to turn it into a real tropical, beach theme. We have only been planning her bedroom for over a year! It always seemed like we could never find a good time to get it all done! So thank you to everyone who helped make it happen!! We are so appreciative. I hear there are palm trees, surfboard, beach chair, grass bedskirt and valance, themed lamps, and much more. Knowing the talents of my mother, sister and aunt I can only imagine how spectacular her new bedroom will be. I can't wait for Brianna to see it!!
Let the countdown begin! Love to all and thank you for all of your prayers and support! God Bless!
Bree's Family
Monday, December 1, 2008
Friday - November 28 - Thanksgiving!
I've been really busy this week so I haven't been putting much in my blog. That's a good thing cause it means I'm feeling better! Everybody in my family was here! Mom and Kaitlyn and me got excited to see my stepdad on Tuesday and then we met my Dad and stepmon and my brothers and sisters and we all went to Spaghetti Warehouse for dinner. After that we all went back to hotels so I could have radiation and physical therapy and school. On Wednesday Mom showed me my plane ticket home - it's REAL and I REALLY get to go home to my own bed! On Wednesday afternoon we went swimming and then we went to the mall and went shopping.
On Thursday morning I got to have breakfast with everybody and then we went to Ronald McDonald House for Thanksgiving dinner. They had lots of fun stuff for kids to do. We made gingerbread houses and also played a game. We got to have dinner all together for once. The best part is that I don't have any doctor appointments for 4 whole days! After I woke up from my nap all of us kids went swimming at the Marriott and then we had some snacks before we went to bed.
On Friday we got up early so we could go to this famous hotel called the Peabody because they have this duck march. It was kind of weird but it was fun too. Everybody stood in line for like 2 hours to watch some ducks march from the elevator inside the hotel to the fountain. They said the ducks have been doing it for a long time. It WAS really cute the way the baby ducks followed the mother duck. Bridget is going to make a chocolate pie for me the healthy way and I can't wait cause chocolate is one of my favorites! Tonight we are supposed to go on a trolley ride and that will be fun.
Love,
Bree
Note from Mom:
While Brianna was attending school I picked up our plane tickets for Friday, December 5th. We will arrive at O'Hare around 10:15 pm. (Our only option....we don't care as we are just looking forward to being home in our own beds!) At lunch I showed Brianna the tickets and this is when she finally realized this is, "for real!" I warned her about being cautiously optimistic. Please pray that everything goes well this week so we can make our trip home Friday evening.
We also took time to begin packing up the room so we can send as much home as possible. Matt and Kaitlyn will head home 1 day before we leave so he can take any remaining items and drop them off with Kaitlyn returning home. We will attempt to live out of a couple of suitcases for the next week.
Friday morning Bob and I took the girls to the Peabody Hotel in order to watch the ducks march from the elevator to the fountain. We thought the ducks came out at 10am but they actually parade out at 11am. It was a good thing we were early as at least a few hundred people crowded the lobby and balcony to watch the 5 ducks parade out in a line from the elevator to the fountain. The Peabody is a gorgeous hotel and it is just an experience to see the architecture and of course watch the ducks. After the parade we left for RMH and again met Matt, Maria and kids. Matt and Maria decided to take the girls around town until Brianna's cousins. Bridget, Bernadette, and Lauren should be arriving any minute. Bridget, the future chef will be cooking some healthy, sweet food for Brianna. She is craving a chocolate pie and I think Bridget will be making a dairy free, sugar free pie. She has plenty of resources from culinary school so I am looking forward to more advice.
Tonight Bob and I will take the girls along with their cousins downtown on the trolley. We will go on a carriage ride, walk down Beale St., and go back to the Marriott and enjoy swimming or playing cards.
We hope everyone had a blessed Thanksgiving. Thank you for your support and your prayers!
Bree's Family
Tuesday, November 25, 2008
Tuesday, November 25 - Waiting!
I can hardly wait! My stepdad and stepmom and Zachary, Madison and Gianna are supposed to get here tonight to celebrate Thanksgiving with me. And on Friday my cousins Bridget and Bernadette and Lauren will come to stay for a few days too! The doctors say that I can go back home pretty soon! Starting right now it is supposed to be only two more weeks before I can finally go home! I have a lot to be thankful for this Thanksgiving-that's for sure!
Love,
Bree
Note from Parents:
Today we had a longer day at the hospital, but the appointments were easy. We met with the doctors to determine a possible date we can return home. Jokingly, we tried to get the doctor to initial our calendar. He caught himself before putting pen on paper! :-) Though he didn't put pen on paper, he said we can speak with the travel office about scheduling our return tickets for Friday, December 5th!!! Please pray especially hard for all of Brianna's tests and appointments to continue to show progress and show positive results that will allow us to return home to our friends and family. This is 1 week sooner than we were anticipating. We are cautiously optimistic as we know that there is always the possibility for a postponement if there are scheduling conflicts or if doctors are not happy with any of the numbers or results.
Brianna is the sweetest, most caring child because despite what she is enduring she is always thinking of others first. She has been spending her own money to purchase gifts for her parents, step-parents, and all of her siblings. If you cough, she makes sure you are o.k. Aunt Jackie said she wishes she could have a fraction of the sweetness that Brianna possesses. She doesn't think it is possible for anyone to be more thoughtful, caring or kind.
Kaitlyn is keeping up with her need to clean and organize as she will wipe down all dining room tables at the RMH at least once/twice a day. She sweeps and swiffers the floor of our room. She is currently cleaning our bathroom and doing laundry. She also ran downstairs and did the dishes as well....See how much energy she has! She's also been diligently working on her homework assignments.
We would like to wish you all a very happy Thanksgiving holiday. We know we have a lot to be thankful for this year. This experience is showing us that we have a network of family and friends that we can never thank enough. Everyone is demonstrating unbelieveable amounts of kindness and compassion. Please continue to pray for Brianna, Max, and Kole that they may be blessed with God's healing power. The Great Physician has worked miracles. We have already witnessed many small miracles and blessings and we'll have patience to allow God to work his miracles. "Patience is having faith in God's timing." "He will answer prayers in one of three ways: Yes, Not Yet, I have something better in mind." These two quotes/thoughts have occupied our minds. We will have patience and we will continue to have faith that the blood of the lamb will cure Brianna. Patience that all that we endure is for a purpose and Jesus is with us through it all.
God Bless! Happy Thanksgiving!
From Brianna and families!
Love,
Bree
Note from Parents:
Today we had a longer day at the hospital, but the appointments were easy. We met with the doctors to determine a possible date we can return home. Jokingly, we tried to get the doctor to initial our calendar. He caught himself before putting pen on paper! :-) Though he didn't put pen on paper, he said we can speak with the travel office about scheduling our return tickets for Friday, December 5th!!! Please pray especially hard for all of Brianna's tests and appointments to continue to show progress and show positive results that will allow us to return home to our friends and family. This is 1 week sooner than we were anticipating. We are cautiously optimistic as we know that there is always the possibility for a postponement if there are scheduling conflicts or if doctors are not happy with any of the numbers or results.
Brianna is the sweetest, most caring child because despite what she is enduring she is always thinking of others first. She has been spending her own money to purchase gifts for her parents, step-parents, and all of her siblings. If you cough, she makes sure you are o.k. Aunt Jackie said she wishes she could have a fraction of the sweetness that Brianna possesses. She doesn't think it is possible for anyone to be more thoughtful, caring or kind.
Kaitlyn is keeping up with her need to clean and organize as she will wipe down all dining room tables at the RMH at least once/twice a day. She sweeps and swiffers the floor of our room. She is currently cleaning our bathroom and doing laundry. She also ran downstairs and did the dishes as well....See how much energy she has! She's also been diligently working on her homework assignments.
We would like to wish you all a very happy Thanksgiving holiday. We know we have a lot to be thankful for this year. This experience is showing us that we have a network of family and friends that we can never thank enough. Everyone is demonstrating unbelieveable amounts of kindness and compassion. Please continue to pray for Brianna, Max, and Kole that they may be blessed with God's healing power. The Great Physician has worked miracles. We have already witnessed many small miracles and blessings and we'll have patience to allow God to work his miracles. "Patience is having faith in God's timing." "He will answer prayers in one of three ways: Yes, Not Yet, I have something better in mind." These two quotes/thoughts have occupied our minds. We will have patience and we will continue to have faith that the blood of the lamb will cure Brianna. Patience that all that we endure is for a purpose and Jesus is with us through it all.
God Bless! Happy Thanksgiving!
From Brianna and families!
November 23 - The Start of a Week of Giving Thanks
Sunday was the last night that Grandma Close and Aunt Jackie and my cousins JJ and Dan were going to be here so we went to the movies and saw Bolt. It was really good and I'm glad we got to do something fun with them before they had to go home.
On Monday we got up and had breakfast with them before they had to go home. It was sad that they had to go back to Chicago but I'm glad they got to visit for a while. Then we got on the shuttle to go to St. Jude. The doctors said I didn't have to take so much medicine now and that's good cause I can sleep better when I don't and I don't get so tired so fast. I had physical therapy today and it helps my muscles stay strong and gives me energy. After dinner we played Clue. Kaitlynn is fun. She's like the energizer bunny! Thank you for reading my blog and for all the presents and stuff you send. It helps the time go by faster.
Love,
Bree
Note from Parents:
THANK YOU to Grandma, Jackie, JJ and Dan for coming to visit! We are glad you got to come to visit and see what kind of a place St. Jude's is. After breakfast we jumped on the 7:30 shuttle over to St. Jude to start our day of appointments. Dr. Merchant told us that Brianna could go down in dose again on the steriods and that is awesome news! Brianna's increased energy and her ability to sleep better at night is a combination of the steriods going down in dose and the radiation treatments having a positive affect. Brianna had her physical therapy today which is helping her keep her energy level up and keep the muscles working for her. We give many THANKS that the treatments are having the affect that they are!
We had dinner and Jennifer and I played Clue with Kaitlyn and Brianna. It was a nice way to spend some time with both kids. As their parents Jennifer and I give THANKS everyday for letting God bring them into our lives. In case anyone was wondering... Kaitlyn is still like the Energizer bunny-- she keeps going and going and going -- well you get the idea.
Jennifer has explained how grateful we are for the love and support we have recieved from the Lincoln Way Family but I would also like to give a shout of thanks and place some praise on the team at my employer's office for the tireless love and support and work that they have put into creating the website (www.curebrianna.com), organizing the Christine Magnuson visit and the other assorted gifts that the Olympic athletes will be sending to Brianna. The "Brianna team" at work has done an exceptional job and we THANK them for their love and support. The company has become a great family that I have been a part of for only a short time but they have given so much of their time and efforts to Brianna's cause.
This week is Thanksgiving and we are reminded to recall all the things that we are thankful for. The situation we are facing doesn't excuse us from remembering the great people and great things in our lives. So as we all join this weekend as a family here in Memphis we give thanks for all of you that have joined in praying and sending love to Brianna. THANK YOU !!!
Regards,
Brianna's Family
On Monday we got up and had breakfast with them before they had to go home. It was sad that they had to go back to Chicago but I'm glad they got to visit for a while. Then we got on the shuttle to go to St. Jude. The doctors said I didn't have to take so much medicine now and that's good cause I can sleep better when I don't and I don't get so tired so fast. I had physical therapy today and it helps my muscles stay strong and gives me energy. After dinner we played Clue. Kaitlynn is fun. She's like the energizer bunny! Thank you for reading my blog and for all the presents and stuff you send. It helps the time go by faster.
Love,
Bree
Note from Parents:
THANK YOU to Grandma, Jackie, JJ and Dan for coming to visit! We are glad you got to come to visit and see what kind of a place St. Jude's is. After breakfast we jumped on the 7:30 shuttle over to St. Jude to start our day of appointments. Dr. Merchant told us that Brianna could go down in dose again on the steriods and that is awesome news! Brianna's increased energy and her ability to sleep better at night is a combination of the steriods going down in dose and the radiation treatments having a positive affect. Brianna had her physical therapy today which is helping her keep her energy level up and keep the muscles working for her. We give many THANKS that the treatments are having the affect that they are!
We had dinner and Jennifer and I played Clue with Kaitlyn and Brianna. It was a nice way to spend some time with both kids. As their parents Jennifer and I give THANKS everyday for letting God bring them into our lives. In case anyone was wondering... Kaitlyn is still like the Energizer bunny-- she keeps going and going and going -- well you get the idea.
Jennifer has explained how grateful we are for the love and support we have recieved from the Lincoln Way Family but I would also like to give a shout of thanks and place some praise on the team at my employer's office for the tireless love and support and work that they have put into creating the website (www.curebrianna.com), organizing the Christine Magnuson visit and the other assorted gifts that the Olympic athletes will be sending to Brianna. The "Brianna team" at work has done an exceptional job and we THANK them for their love and support. The company has become a great family that I have been a part of for only a short time but they have given so much of their time and efforts to Brianna's cause.
This week is Thanksgiving and we are reminded to recall all the things that we are thankful for. The situation we are facing doesn't excuse us from remembering the great people and great things in our lives. So as we all join this weekend as a family here in Memphis we give thanks for all of you that have joined in praying and sending love to Brianna. THANK YOU !!!
Regards,
Brianna's Family
Monday, November 24, 2008
Friday-Saturday - Magnuson Day at RMH!!!
On Friday I only had 2 appointments and I got to go back to Ronald McDonald House in the morning. I got visitors in the afternoon and that's always cool cause they bring messages and sometimes packages from friends back home. Aunt Jackie came with a great scrapbook with pictures for me to see. There is room in the scrapbook for more pictures. My favorite picture was JJ, me and Kaitlyn. We dressed up in Mom's OLD prom dresses. It was really fun!
I wanted to go to the Olive Garden for dinner but there was too much traffic and I was starving so we got burgers instead.
On Saturday the most amazing thing happened. Christine Magnuson came to see me at RMH! She won a Silver medal in the Olympics in swimming and I can't believe she came all the way to Memphis to see me! She gave me an Olympic jacket and even let me take pictures with her silver medal! Then she gave me an autographed book and swimcap and a picture of her. I guess she stayed for almost and hour and told funny stories and answered lots of questions. It was REALLY COOL! We found out that sometimes she practices at Lincoln-Way North and she is from Tinley Park. That's real close to where I live. Her father is the director of the Sharks swim program. I couldn't stop smiling it was soooo exciting!
Love,
Bree
Note from Parents:
Thank you to everyone who sent pictures for Brianna to see how much she is loved and missed!! We are going to keep adding to the scrapbook so feel free to send your pictures if you missed the previous deadline. The book is great....I can't stop looking through it! The best picture was J.J., Brianna, and Kaitlyn all wearing my old prom and homecoming dresses! Priceless...I can't believe J.J. agreed to let Jackie include that picture! I would also like to thank our friends at Hallmark Services Corporation for their very thoughtful, caring gifts.
I took Aunt Jackie and Grandma Close to the giftshop and on a tour of the hospital where we ran into Dr. Baker. They were able to see for themselves what a wonderful, caring man he is and what a "magical," inspirational place St. Jude is...
Cousin Dan, J.J., Brianna, and Kaitlyn enjoyed the gameroom at RMH until we returned. Matt and I took everyone to the Marriott to check in before heading to dinner. Brianna wanted Olive Garden so we decided to trek to Germantown (about 16 miles down the interstate) however, Friday night traffic and a major accident tied up traffic and forced us to venture into the unknown. Dan and Brianna were both past their feeding times and were beginning to get impatient. We had dinner at a Backyard Burger joint then traveled back to turn in for the night.
Saturday was Brianna's big visit with Olympic swimmer Christine Magnuson!!! We were eager with anticipation and so excited to have her personally visit Brianna at the RMH. After the visit, the remaining part of the day we spent at the mall (back to Germantown) shopping for the holiday and spending giftcards. Tonight we found Olive Garden just around the corner. We returned to the hotel after dinner and the night swimming at the hotel.
We are having a blast this weekend. Brianna is laughing and showing so much more energy...able to go all day and night without feeling/appearing tired. She is thoroughly enjoying time spent with the family. J.J. especially as the two of them have been best buddies forever! Kaitlyn is exhausting everyone with her level of energy....way too much for anyone to handle!! I believe I said it before and I'll remind everyone again. She will wear you out physically, mentally, and emotionally as she is constantly talking, bouncing, spinning, etc. "Spunky" just doesn't seem adequate...she is much more!! The next 2-3 weeks should be VERY interesting!!!
God Bless!!
Bree's Family
I wanted to go to the Olive Garden for dinner but there was too much traffic and I was starving so we got burgers instead.
On Saturday the most amazing thing happened. Christine Magnuson came to see me at RMH! She won a Silver medal in the Olympics in swimming and I can't believe she came all the way to Memphis to see me! She gave me an Olympic jacket and even let me take pictures with her silver medal! Then she gave me an autographed book and swimcap and a picture of her. I guess she stayed for almost and hour and told funny stories and answered lots of questions. It was REALLY COOL! We found out that sometimes she practices at Lincoln-Way North and she is from Tinley Park. That's real close to where I live. Her father is the director of the Sharks swim program. I couldn't stop smiling it was soooo exciting!
Love,
Bree
Note from Parents:
Thank you to everyone who sent pictures for Brianna to see how much she is loved and missed!! We are going to keep adding to the scrapbook so feel free to send your pictures if you missed the previous deadline. The book is great....I can't stop looking through it! The best picture was J.J., Brianna, and Kaitlyn all wearing my old prom and homecoming dresses! Priceless...I can't believe J.J. agreed to let Jackie include that picture! I would also like to thank our friends at Hallmark Services Corporation for their very thoughtful, caring gifts.
I took Aunt Jackie and Grandma Close to the giftshop and on a tour of the hospital where we ran into Dr. Baker. They were able to see for themselves what a wonderful, caring man he is and what a "magical," inspirational place St. Jude is...
Cousin Dan, J.J., Brianna, and Kaitlyn enjoyed the gameroom at RMH until we returned. Matt and I took everyone to the Marriott to check in before heading to dinner. Brianna wanted Olive Garden so we decided to trek to Germantown (about 16 miles down the interstate) however, Friday night traffic and a major accident tied up traffic and forced us to venture into the unknown. Dan and Brianna were both past their feeding times and were beginning to get impatient. We had dinner at a Backyard Burger joint then traveled back to turn in for the night.
Saturday was Brianna's big visit with Olympic swimmer Christine Magnuson!!! We were eager with anticipation and so excited to have her personally visit Brianna at the RMH. After the visit, the remaining part of the day we spent at the mall (back to Germantown) shopping for the holiday and spending giftcards. Tonight we found Olive Garden just around the corner. We returned to the hotel after dinner and the night swimming at the hotel.
We are having a blast this weekend. Brianna is laughing and showing so much more energy...able to go all day and night without feeling/appearing tired. She is thoroughly enjoying time spent with the family. J.J. especially as the two of them have been best buddies forever! Kaitlyn is exhausting everyone with her level of energy....way too much for anyone to handle!! I believe I said it before and I'll remind everyone again. She will wear you out physically, mentally, and emotionally as she is constantly talking, bouncing, spinning, etc. "Spunky" just doesn't seem adequate...she is much more!! The next 2-3 weeks should be VERY interesting!!!
God Bless!!
Bree's Family
Friday, November 21, 2008
Wednesday-Thursday - November 19-20
Boy, I'm starting to feel better finally. It's not so boring any more and I don't get so tired so I'm walking around instead of riding in a wheelchair. Even when we were done with the appointments I didn't have to take a nap. I've been doing alot of arts and crafts and watched Pirates of the Caribbean again. (Johnny Depp is HOT!) I'm starting to sleep more at night and the medicine isn't keeping me awake. Yesterday and today I started doing some of my homework. I am really behind but Mom is helping me get caught up. (She's not very good at algebra tho'). I worked on some science too. I'm doing a project with a candy bar and I didn't even eat any of it! I'm supposed to start eating healthy stuff so candy bars are NOT on the list.
Kaitlyn is going to come stay with me until I get to go home. She THINKS she gets to skip school but she won't get to. At Ronald McD House kids do their homework anyway, even if they are sick unless they are too tired. But they help us get it made up. K, that's all for now.
Love,
Bree
Note from Parents:
These past two days Brianna's personality is reappearing. She was not complaining about being bored and had the energy to walk all day through numerous appointments. When we returned to RMH we assumed she would plop on the bed for a nap, but she has been very busy with arts and crafts. Another sign that she is feeling better. She is participating in conversation and we have been able to get a few belly laughs out of her! She also admitted that Johnny Depp is "hot!" (We watched Pirates of the Caribbean again.) Up until this point she has denied attraction to any movie/t.v. star. She slept well 3 out of the last 4 nights being able to put together at least 6 hours straight. She is continuing to come down off of the steriods and we are sure she is feeling better with the numerous negative side effects decreasing. Originally, when first diagnosed she was taking 16 mg/day and is now down to 2 mg/day. By Thanksgiving she should be completely weaned and can focus on racing to the finish line.
She finally decided to go to school yesterday and today and spent time with an instructor trying to get caught up with her school work. We hit our limit with math. Getting beyond a certain level in algebra...just forget it! She also worked on a science lab involving a Milky Way candy bar. We were so proud that she passed on eating any part of it as she is attempting to stick to her new diet restrictions. We are slowly weaning her off sugar and dairy products and moving to a completely organic diet. Comfort foods over the past several weeks were proving too hard to let go. It is another sign of her progress to see that she is now able to avoid temptations. We are so very proud of her hard work, especially over the past several days. We are thrilled to see our Brianna coming back. Smiling, laughing, talking, working on her art projects....physically she looks very different (that is temporary) but when your child is not themselves mentally or emotionally that is the most heart-wrenching. We are beginning to see Brianna the way she was before the diagnosis.
Tomorrow Grandma Close, Aunt Jackie, cousin Dan, and Kaitlyn will arrive. Kaitlyn will stay with us until the end of Brianna's treatment. Her personality and energy will definitely help Brianna feel better. Once they begin fighting, etc. it will feel more like home...we can't wait!! We think Kaitlyn believes she will not have to work on homework while she is here and may be begging Bob to come get her so she can "relax" at school. Our neighbor (Miss Penny) informed me that Kaitlyn was already checking things off her list that she can put off until later. Miss Penny is an elementary teacher and would have no part of Kaitlyn trying to get out of doing homework! Thanks Penny! :-) Penny informed us that Kaitlyn organized her tupperware cabinet as well!!
I finally caved and asked Matt to drive me to a TakeCare Clinic at Walgreens as I have had a sore throat for a few weeks. Compared to what Brianna is experiencing my sore throat seems pretty insignificant, but I decided to make sure it wasn't strep. It is most likely a combination of factors (dry air, stress, etc.) I will go back to giving Brianna kisses as often as I can!!
Love and Prayers, Brianna's Family
Kaitlyn is going to come stay with me until I get to go home. She THINKS she gets to skip school but she won't get to. At Ronald McD House kids do their homework anyway, even if they are sick unless they are too tired. But they help us get it made up. K, that's all for now.
Love,
Bree
Note from Parents:
These past two days Brianna's personality is reappearing. She was not complaining about being bored and had the energy to walk all day through numerous appointments. When we returned to RMH we assumed she would plop on the bed for a nap, but she has been very busy with arts and crafts. Another sign that she is feeling better. She is participating in conversation and we have been able to get a few belly laughs out of her! She also admitted that Johnny Depp is "hot!" (We watched Pirates of the Caribbean again.) Up until this point she has denied attraction to any movie/t.v. star. She slept well 3 out of the last 4 nights being able to put together at least 6 hours straight. She is continuing to come down off of the steriods and we are sure she is feeling better with the numerous negative side effects decreasing. Originally, when first diagnosed she was taking 16 mg/day and is now down to 2 mg/day. By Thanksgiving she should be completely weaned and can focus on racing to the finish line.
She finally decided to go to school yesterday and today and spent time with an instructor trying to get caught up with her school work. We hit our limit with math. Getting beyond a certain level in algebra...just forget it! She also worked on a science lab involving a Milky Way candy bar. We were so proud that she passed on eating any part of it as she is attempting to stick to her new diet restrictions. We are slowly weaning her off sugar and dairy products and moving to a completely organic diet. Comfort foods over the past several weeks were proving too hard to let go. It is another sign of her progress to see that she is now able to avoid temptations. We are so very proud of her hard work, especially over the past several days. We are thrilled to see our Brianna coming back. Smiling, laughing, talking, working on her art projects....physically she looks very different (that is temporary) but when your child is not themselves mentally or emotionally that is the most heart-wrenching. We are beginning to see Brianna the way she was before the diagnosis.
Tomorrow Grandma Close, Aunt Jackie, cousin Dan, and Kaitlyn will arrive. Kaitlyn will stay with us until the end of Brianna's treatment. Her personality and energy will definitely help Brianna feel better. Once they begin fighting, etc. it will feel more like home...we can't wait!! We think Kaitlyn believes she will not have to work on homework while she is here and may be begging Bob to come get her so she can "relax" at school. Our neighbor (Miss Penny) informed me that Kaitlyn was already checking things off her list that she can put off until later. Miss Penny is an elementary teacher and would have no part of Kaitlyn trying to get out of doing homework! Thanks Penny! :-) Penny informed us that Kaitlyn organized her tupperware cabinet as well!!
I finally caved and asked Matt to drive me to a TakeCare Clinic at Walgreens as I have had a sore throat for a few weeks. Compared to what Brianna is experiencing my sore throat seems pretty insignificant, but I decided to make sure it wasn't strep. It is most likely a combination of factors (dry air, stress, etc.) I will go back to giving Brianna kisses as often as I can!!
Love and Prayers, Brianna's Family
Wednesday, November 19, 2008
Tuesday - November 18 - Newsday
My family is trying to get my greatest wish granted from the Make A Wish people. What I wished for is a vacation with ALL of my family. I want my Mom and Dad and my Stepmom and Stepdad and ALL my brothers and sisters to go somewhere where I could snorkel and swim with dolphins and just hang out with my brothers and sisters. Make A Wish sometimes gets famous people to meet kids but what I want is to get to go on vacation with my whole family all together. Well, we'll see.
Love, Bree
Note from Parents:
We are trying to expedite Brianna's wish through the Make-A-Wish foundation. She has stated that her greatest wish would be to go on a vacation with both of her families. Her dad's family and her mom's family...together on a tropical vacation. She would swim with dolphins, snorkel, and just enjoy swimming and hanging out with all of her siblings. It appears that this may be a more complicated process than you would expect. We are doing our best to communicate with the organization our unique situation and hope that they will in fact be able to grant her the wish. She colored a Christmas picture the other day that included both families next to a Christmas tree. She couldn't care less about meeting anyone famous, etc. We tried to help her explore all options through the make-a-wish packet and she could not get beyond wanting both families to be together. Along with her statement about just wanting to be home, on the couch, watching t.v. with her family and that she doesn't need anything for Christmas (just to be home) she has a very real sense of priorities. Forget material items, forget celebrities....just be with family!! The Naperville Sun and Chicago SunTimes covered Brianna and Max's story today and we hope that the greater community will open up their hearts and begin an even larger prayer network. We hope that our loving community continues to grow and that people will learn more about this rare form of childhood cancer and help us fight to find a cure. We understand that the statistics are quite negative, yet there is much more to keep in mind. The families and some friends are very aware of the challenge we face. However, we believe that as you read these updates and those from the Lacewells you will realize that the hope we have and the faith we possess far outweigh any numbers doctors may present. Not only do we believe that God CAN heal but God WILL heal our children. That is what separates those that truly believe and we have deepened our faith more than ever to be able to find the courage and strength to fight our battle on a daily basis. We are not going to leave any stone unturned. If our story can spread far and wide it is our hope that we will not have missed a single opportunity to explore any/all treatments and research that can help our children. DIPG parents are a very determined and motivated group of people and we are fortunate enough to have a strong network of prayer groups and community support from our family, friends and neighbors.We all know children are more resilient than adults. We all know that they have an unbelievable ability to heal and bounce back. Brianna is showing progress and we will continue to pray for her to continue on her path of healing. She is starting to "perk up" more and has enjoyed two nights in a row of full sleep. We believe she is feeling some improvement in her condition as her headaches have not resumed and her double vision has almost completely diminished. Please pray that she continues with her progress. Pray that doctors work to find the answer to this disease. Pray that the siblings of Max and Brianna are able to remain positive and allow this experience to bring them a better understanding of their faith.Thank you to the staff at Gregory Middle School for their overwhelming support to help Brianna, as well as Eric and Haley through this difficult time. The compassion and understanding displayed by the entire staff is overwhelming and greatly appreciated.
God Bless!
Brianna's Family
Love, Bree
Note from Parents:
We are trying to expedite Brianna's wish through the Make-A-Wish foundation. She has stated that her greatest wish would be to go on a vacation with both of her families. Her dad's family and her mom's family...together on a tropical vacation. She would swim with dolphins, snorkel, and just enjoy swimming and hanging out with all of her siblings. It appears that this may be a more complicated process than you would expect. We are doing our best to communicate with the organization our unique situation and hope that they will in fact be able to grant her the wish. She colored a Christmas picture the other day that included both families next to a Christmas tree. She couldn't care less about meeting anyone famous, etc. We tried to help her explore all options through the make-a-wish packet and she could not get beyond wanting both families to be together. Along with her statement about just wanting to be home, on the couch, watching t.v. with her family and that she doesn't need anything for Christmas (just to be home) she has a very real sense of priorities. Forget material items, forget celebrities....just be with family!! The Naperville Sun and Chicago SunTimes covered Brianna and Max's story today and we hope that the greater community will open up their hearts and begin an even larger prayer network. We hope that our loving community continues to grow and that people will learn more about this rare form of childhood cancer and help us fight to find a cure. We understand that the statistics are quite negative, yet there is much more to keep in mind. The families and some friends are very aware of the challenge we face. However, we believe that as you read these updates and those from the Lacewells you will realize that the hope we have and the faith we possess far outweigh any numbers doctors may present. Not only do we believe that God CAN heal but God WILL heal our children. That is what separates those that truly believe and we have deepened our faith more than ever to be able to find the courage and strength to fight our battle on a daily basis. We are not going to leave any stone unturned. If our story can spread far and wide it is our hope that we will not have missed a single opportunity to explore any/all treatments and research that can help our children. DIPG parents are a very determined and motivated group of people and we are fortunate enough to have a strong network of prayer groups and community support from our family, friends and neighbors.We all know children are more resilient than adults. We all know that they have an unbelievable ability to heal and bounce back. Brianna is showing progress and we will continue to pray for her to continue on her path of healing. She is starting to "perk up" more and has enjoyed two nights in a row of full sleep. We believe she is feeling some improvement in her condition as her headaches have not resumed and her double vision has almost completely diminished. Please pray that she continues with her progress. Pray that doctors work to find the answer to this disease. Pray that the siblings of Max and Brianna are able to remain positive and allow this experience to bring them a better understanding of their faith.Thank you to the staff at Gregory Middle School for their overwhelming support to help Brianna, as well as Eric and Haley through this difficult time. The compassion and understanding displayed by the entire staff is overwhelming and greatly appreciated.
God Bless!
Brianna's Family
Tuesday, November 18, 2008
Monday - November 17
Today started out great and then we skipped one appointment and did the other two. I got to eat lunch with Kole. He's my new little buddy! One of the people here cooks special food for us and I got to try a chicken nugget. I was afraid it would be really yuck because it is supposed to be healthy but it was really good! It's a good thing cause Mom is finding out a lot about food and stuff like organic food. Some of it doesn't sound really good cause its different than what I usually eat but the chicken was so good the rest of it probably will be too!
Love,
Bree
Note from Parents:
Today started out great with things running ahead of schedule but appointments came to a screeching halt with one appointment (we decided to ditch) and moved on to the last two appointments. We ditched the height, weight, temperature and blood pressure check...We are sure they will track us down tomorrow. :-)
Brianna started babysitting this summer and though shy in front of adults, she loves little kids and Kole is a sweetheart. He is very shy but is starting to open up with us and it is great to see him smile!
Dinner tonight presented us with another blessing. We started talking with a woman who was preparing a wonderful meal and learned that she was cooking for her 8 year old niece and during the conversation we learned that her niece shares the same diagnosis as Brianna. However, her niece is on a different treatment protocol. We told her dinner looked great and she began discussing diet and nutrition. She is from New York and is a nutritionist and since we have been looking into changing Brianna's diet we were intrigued. Matt has been completing a lot of research on DIPG patients and looking at how to change habits to try to counter tumor growth. We already know we will be making huge changes and are very nervous. What do we buy? How/What do we cook? How do we know what is best? It is overwhelming to think about all that we have to look forward to...BUT we (and Kole's mom) are going to study and listen to the nutritionist and even take some cooking lessons (we hope!) She made a wonderful pasta dinner with "chicken" parmesan and vegetables, etc. All completely organic, meat and sugar free!! At first this sounded absolutely horrible and we were wondering how we could possibly pull this off, but if you saw the dinner she made you would be amazed. She even gave me a "chicken" nugget for Brianna...she tasted the nugget and it was a big hit!
We feel this was another blessing as we are making connections with people that know exactly what we are having to endure and we are all working together to fight DIPG any and every way we know how! We now have a nutritionist here at RMH to teach us how to shop, cook, etc. and we can give Brianna every advantage in her treatment and ability to heal!
Thank you for all of your support and please continue to pray for Brianna's continued progress and healing. We would also like to thank those of you who have sent books on the power of miracles, power of healing, and hope! We are gaining in strength everyday!! We believe we are finally finding some words to comfort Brianna even more than before. Thank you!
Bree's Parents
Love,
Bree
Note from Parents:
Today started out great with things running ahead of schedule but appointments came to a screeching halt with one appointment (we decided to ditch) and moved on to the last two appointments. We ditched the height, weight, temperature and blood pressure check...We are sure they will track us down tomorrow. :-)
Brianna started babysitting this summer and though shy in front of adults, she loves little kids and Kole is a sweetheart. He is very shy but is starting to open up with us and it is great to see him smile!
Dinner tonight presented us with another blessing. We started talking with a woman who was preparing a wonderful meal and learned that she was cooking for her 8 year old niece and during the conversation we learned that her niece shares the same diagnosis as Brianna. However, her niece is on a different treatment protocol. We told her dinner looked great and she began discussing diet and nutrition. She is from New York and is a nutritionist and since we have been looking into changing Brianna's diet we were intrigued. Matt has been completing a lot of research on DIPG patients and looking at how to change habits to try to counter tumor growth. We already know we will be making huge changes and are very nervous. What do we buy? How/What do we cook? How do we know what is best? It is overwhelming to think about all that we have to look forward to...BUT we (and Kole's mom) are going to study and listen to the nutritionist and even take some cooking lessons (we hope!) She made a wonderful pasta dinner with "chicken" parmesan and vegetables, etc. All completely organic, meat and sugar free!! At first this sounded absolutely horrible and we were wondering how we could possibly pull this off, but if you saw the dinner she made you would be amazed. She even gave me a "chicken" nugget for Brianna...she tasted the nugget and it was a big hit!
We feel this was another blessing as we are making connections with people that know exactly what we are having to endure and we are all working together to fight DIPG any and every way we know how! We now have a nutritionist here at RMH to teach us how to shop, cook, etc. and we can give Brianna every advantage in her treatment and ability to heal!
Thank you for all of your support and please continue to pray for Brianna's continued progress and healing. We would also like to thank those of you who have sent books on the power of miracles, power of healing, and hope! We are gaining in strength everyday!! We believe we are finally finding some words to comfort Brianna even more than before. Thank you!
Bree's Parents
Lazy Quiet Weekend, November 15
Radiation is half over! I have already had 18 treatments and they told me I get 33. Yay! I can't wait until I can go home. My stepdad and sister Kaitlyn left and that was sad. It was fun having her here and we got to share a bed at the hotel. The only bad thing is that Kaitlyn snores! I had to yell at her to "shut up!" and then Mom reminded me that Kaitlyn wouldn't hear me anyway cause she sleeps really sound. Kaitlyn is spunky and it was fun to have her come visit, but the medicine I take makes me really tired so she entertained me. Then we started bugging each other and that made it almost like being at home. Some of the medicine they give me keeps me from sleeping good and I wake up hungry - like on Sunday at 3:00 in the morning! My stepdad did some work so I wouldn't have to be up by myself and Mom got up too and I got to have a snack and watch TV. Kaitlyn didn't even wake up! Then we took a nap and got ready for breakfast and went back to Ronald Mcdonald house. Dad was there too so we got to hang out for a while. Kaitlyn decided to organize my room cause I have so much stuff now she helped me pack some of it to take back home. Aunt Jackie is going to come and help us clean and stuff cause my room is so full from all the presents. My Dad was back at my room so we got to hang out for a while. I can hardly believe I have been here 5 weeks! Sometimes it seems like a long time but it really isn't and I'm supposed to get to go home before Christmas!!
Thank you everybody for helping me!
Bree
Note from Parents:
Brianna is scheduled to finished treatment around December 9th and we are hoping to be home no later than the weekend of the 12th. Towards the end of this week we will have more visitors. Grandma Close, Aunt Jackie, Cousin Dan, and Kaitlyn will come down Friday and they will leave Monday morning....however, Kaitlyn will be staying for the duration. We have decided to have Kaitlyn stay in order to help lift Brianna's spirit when she feels homesick and it will also help Kaitlyn understand what Brianna must endure on a daily basis. The childlife specialists at St. Jude are excellent at helping siblings understand what is going on and they provide activities for them to keep them entertained during appointments. Siblings also have the opportunity to attend the classroom to keep up on school work and meet with psychologists, etc.
Brianna's story is scheduled to appear in the Naperville Sun this coming Tuesday. Brianna and Max's story should focus on their rare tumor and the hope that the families have for them to find healing. By God's grace and His mercy we can be witness to the power of prayer and His ability to heal. Thank you everyone for all of your prayers and support!
Thank you everybody for helping me!
Bree
Note from Parents:
Brianna is scheduled to finished treatment around December 9th and we are hoping to be home no later than the weekend of the 12th. Towards the end of this week we will have more visitors. Grandma Close, Aunt Jackie, Cousin Dan, and Kaitlyn will come down Friday and they will leave Monday morning....however, Kaitlyn will be staying for the duration. We have decided to have Kaitlyn stay in order to help lift Brianna's spirit when she feels homesick and it will also help Kaitlyn understand what Brianna must endure on a daily basis. The childlife specialists at St. Jude are excellent at helping siblings understand what is going on and they provide activities for them to keep them entertained during appointments. Siblings also have the opportunity to attend the classroom to keep up on school work and meet with psychologists, etc.
Brianna's story is scheduled to appear in the Naperville Sun this coming Tuesday. Brianna and Max's story should focus on their rare tumor and the hope that the families have for them to find healing. By God's grace and His mercy we can be witness to the power of prayer and His ability to heal. Thank you everyone for all of your prayers and support!
Friday - November 14
Yesterday and today were really busy. I had a lot of appointments and then I got to spend the night at the hotel with my stepdad and Grandma & Grandpa Siemann and my Aunt Julie. Even my sister Kaitlyn came and that made me cry. Usually we argue but this time I was really happy to see her! Lincoln-Way sent a bunch of more presents and now there are so many I lost track! I hope it's okay with you if I don't say thank you to each person cause I'm afraid I'll forget somebody and hurt their feelings. But I love all of you and thank you SO MUCH for remembering me. I had a really long MRI today and my mom can tell about that. I don't like to talk about that stuff.
Love, Bree
Note from Parents:
The last 2 hour MRI was 2 weeks ago on Halloween and at first the doctor said there didn't appear to be any change in the size of the tumor (not a big deal...could swell, stay the same or get smaller and could take any amount of time - even a few months after radiation before the tumor begins to shrink). He called a few minutes ago and said that while consulting with the radiologist the radiologist would "guesstimate" about a 10-15% reduction in size of the tumor so far! He warned it was only a guess as he was working on exact measurements, but definitely goodo news and he called us so we could celebrate with the family this weekend. Three possible results and we are blessed to already be seeing a reduction in size. The doctor said even if there was no change in size she is doing very well being weaned off of the steroids so he knows the radiation is having a positive effect.
We are going out to dinner tonight, swim at the hotel, sleep in very cozy beds at the hotel and enjoy a relaxing weekend!
Thank you everyone for all of your support! Thank you to the Lacewell family and friends for your kind words of supprot and your prayers. We would like to add a note for everyone reading our updates. Though we don't have exact statistics, we have been told that there are maybe 100-150 kids diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) annually. The fact that 2 children were diagnosed from Naperville, sharing the same family physician and diagnosed in the same month, and we live only about 2 miles apart...makes you believe there is a greater power that has brought us together. If you think about the connections we have in combining our efforts it is overwhelming! The Sharp/Siemann family and Lacewell family and all of their friends will make a huge difference in the lives of Max and Brianna. They are both an inspiration to all of us and they will have a connection with each other that no one will ever be able to comprehend.
We are not going to forget to shout out to Kole Miller (4 years old with the same diagnosis), our little buddy next door at Ronald McDonald House. He is a champ and we love him so much!! We lso love his sister Mckenna (10 years old)! Keep chuggin', Kole, and we will continue praying for you every day!
Brianna, Max and Kole ... you are inspirations to us all! Stay strong and brave!
Love and prayers,
Brianna's family
Love, Bree
Note from Parents:
The last 2 hour MRI was 2 weeks ago on Halloween and at first the doctor said there didn't appear to be any change in the size of the tumor (not a big deal...could swell, stay the same or get smaller and could take any amount of time - even a few months after radiation before the tumor begins to shrink). He called a few minutes ago and said that while consulting with the radiologist the radiologist would "guesstimate" about a 10-15% reduction in size of the tumor so far! He warned it was only a guess as he was working on exact measurements, but definitely goodo news and he called us so we could celebrate with the family this weekend. Three possible results and we are blessed to already be seeing a reduction in size. The doctor said even if there was no change in size she is doing very well being weaned off of the steroids so he knows the radiation is having a positive effect.
We are going out to dinner tonight, swim at the hotel, sleep in very cozy beds at the hotel and enjoy a relaxing weekend!
Thank you everyone for all of your support! Thank you to the Lacewell family and friends for your kind words of supprot and your prayers. We would like to add a note for everyone reading our updates. Though we don't have exact statistics, we have been told that there are maybe 100-150 kids diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) annually. The fact that 2 children were diagnosed from Naperville, sharing the same family physician and diagnosed in the same month, and we live only about 2 miles apart...makes you believe there is a greater power that has brought us together. If you think about the connections we have in combining our efforts it is overwhelming! The Sharp/Siemann family and Lacewell family and all of their friends will make a huge difference in the lives of Max and Brianna. They are both an inspiration to all of us and they will have a connection with each other that no one will ever be able to comprehend.
We are not going to forget to shout out to Kole Miller (4 years old with the same diagnosis), our little buddy next door at Ronald McDonald House. He is a champ and we love him so much!! We lso love his sister Mckenna (10 years old)! Keep chuggin', Kole, and we will continue praying for you every day!
Brianna, Max and Kole ... you are inspirations to us all! Stay strong and brave!
Love and prayers,
Brianna's family
Friday, November 14, 2008
Wednesday, November 12, 2008
Note from the parents:
Bree's Parents
Today our appointments ended before lunchtime and Brianna was able to come back to RMH and take a nap. Grandma Pat (Matt's mom) came to visit Brianna and they are going out to eat and maybe stop at a couple of stores. Tomorrow she will most likely enjoy swimming at the hotel and will have a couple more visitors come around lunchtime (Aunt Julie and Grandma & Grandpa Siemann) Then around dinner time Bob and Kaitlyn will be here. Wow! I am not sure how Brianna is going to handle so much activity!
She is very tired all day and night which is to be expected. With both chemo and radiation fatigue is the primary side effect. Last night she was able to sleep from 9-3 which is unusual because usually she is only able to get 2-3 hours at a time. Hopefully, as she continues to be weaned off of the steriods she can get back on a regular sleep schedule.
Today I was able to speak with Leanne Lacewell (Max's mom) Max is the 5 year old boy I mentioned in previous updates. They are from Naperville and live less than 2 miles from our home. They are undergoing treatment at Children's Memorial in Chicago. We are anxious to be able to return home to meet Max and the rest of the Lacewell family. Please include Max and his family in your prayers. He has a website similar to this, but you must go to www.caringbridge.org and visit maxlacewell.
I was interviewed by the Naperville Sun today about Brianna and all that she is going through along with the impact on our family. I also mentioned Max so the Lacewell family will share their story as well. I believe the story about Brianna and Max will appear sometime next week. The Siemann/Sharp families will be combining their efforts with the Lacewell family in order to help both Brianna and Max. We know the Naperville community can be counted on to deliver an amazing amount of support and resources.
Please continue to keep Brianna AND Max in your thoughts and prayers. We greatly appreciate all the kind words and your continued prayers.
Bree's Parents
Tuesday, November 11, 2008 - Easy Day
Note from the parents:
Bree's Parents
Yesterday and today were "easy" days as we only had a handful of appointments. Brianna's Grandpa Sharp and Aunt Faith left Monday morning and we are looking forward to more visitors throughout the week.
Sunday evening after I completed the update Brianna received some AWESOME mail! The JONAS BROTHERS sent Brianna their autographed photo. She thought that was very cool!
We have enjoyed watching a number of movies...again thank you for the Netflix account! It is awesome!
The doctors are beginning to wean Brianna off of the steroid medication which causes the worst side effects that she experiences. (relentless appetite, bloating of the face and stomach, inability to sleep well, and some joint pain among others) For all that she is experiencing she is absolutely a brave, courageous young lady!! She has been on steroids since she was diagnosed over a month ago and over the past two weeks the doctors have slowly reduced the medication and will continue keeping a close eye for any symptoms. As radiation shrinks the tumor, steroid medication will continue to be reduced.
WE ARE 50% DONE WITH RADIATION!! We passed her doctor in the hallway and he gave her their secret handshake and a kiss on the forehead! He is wonderful with Brianna as I am sure he is with all of his patients. He has four kids of his own ages 7,5,3,1 so you can just imagine how he is with his patients!
Please continue to pray for the radiation and chemotherapy to do their job, for the doctors to find a cure and for God to show us his mercy. We have alreay witnessed so many blessings and miracles along the way and will continue to pray for the ultimate healing when Brianna is able to return home happy, healthy and tumor-free!
We would like to let Max's family know we are praying for them as well! We can't wait to come home to meet you in person! God Bless you and your family! You're in our thoughts and prayers! We are praying for God to give you strength and courage to help you through this very difficult time. If you need us we will be there to support you!!
Bree's Parents
Sunday, November 9, 2008 - Shop & Swim
I got to go shopping at Target today with Grandpa Sharp, Aunt Faith and my Dad. Then we went to Grandpa’s hotel and I got to go swimming! After that Grandpa took me to Olive Garden – YUM! Today was a fun day!
Love, Bree
Note from the parents:
Brianna enjoyed Sunday with a wonderful shopping trip to Target…of course to spend more money…typical girl/lady!! Grandpa Sharp, Aunt Faith and dad took her shopping and back to grandpa’s hotel so she could ejoy swimming! She loves to swim and I am so happy she was able to enjoy the exercise as I am sure it was great therapy for her!
Grandpa loves to spoil Brianna and took her to Olive Garden for dinner. Brianna still has quite an appetite from the steroids. (They are beginning to reduce the amount of steroids and will continue to reduce throughout treatment) She sent me a text message about how much she enjoyed dinner and she said she was stuffed.
Despite what she is going through and the fatigue, etc. she must be experiencing, she is still showing her caring, nurturing personality by making sure I am o.k. while she is gone. I reassure her that I am fine and let her know it is o.k. to enjoy herself and to not worry about me, her dad, etc.
We are so grateful to have such a wonderful support system and we can not thank you enough for the prayers and compassion we are experiencing from a huge network following her hourney.
God Bless Everyone!
Bree’s Parents
Saturday, November 8, 2008 - Madagascar 2
Today started out pretty boring then I received another package from the Lincoln-Way Central High School Varsity Football Team. They sent me some more gifts, a card they all signed and some spending money. Woo Hoo – more shopping! They sent a game that I can’t wait to play called Eat It. Then Grandpa Rick and Aunt Faith came to see me. They brought me even more gifts and it’s not even Christmas yet. We went to eat then we went to see Madagascar 2 – I really liked it! Going out these days makes me get tired very easy so when we got back I went to sleep. And boy did I sleep! My parents keep telling me that we are half way done and that I’m doing so good but all I really want is to just go home. I can’t wait!
Love, Bree
Note from the parents:
The first half of the day was very lazy. While most of us would say relaxing, Brianna complained of being bored. HOWEVER, it is not for lack of things to do as we have so many great gifts from everyone. There is no way we could possibly be bored. I think she was enjoying her rest but was also relieving some stress and vent a little frustration about being sick. I am glad she is able to share her emotions which I hope helps her from wearing herself out and allows her to feel like she has some control over the situation.
Brianna was excited to receive another package. The Lincoln-Way Central H.S. Varsity Football Tam sent her some gifts and extra cash for her to spend on anything she wants. Everyone on the team signed a get well card. Amazing compassion displayed by high school boys! Though they admitted they were not sure what a 12 year old girl would like, they did a great job picking out gifts for Brianna. I personally look forward to playing the game “Eat It”, a snacks and sweets trivia game…I think I might finally be able to win a family game.
She also perked up when Grandpa Rick and Aunt Faith arrived. They brought more gifts, ate dinner with us, and took us to see Madagascar 2! GREAT MOVIE-we highly recommend it!! Brianna enjoyed going out to the movie, but was exhausted when we returned. She immediately went to bed and finally slept through the night. Since she arrived in Memphis she has not been able to sleep for more than a few hours at a time. Hopefully, some new medicine will help and as she progresses through treatment she will begin to feel better and continue to improve with her sleeping pattern.
Know that Brianna is hanging tough and really doing her best to maintain a positive attitude and strong spirit. This week will be a busy week with plenty of visitors and will hopefully make the week fly by for Brianna. We keep trying to focus on day-to-day, but Brianna is beginning to question how many more weeks. All we want for Christmas (including Brianna) is to be home with family and friends and we are excited as we are now hearing Christmas music at the mall and seeing Christmas commercials played on t.v….we are getting closer!!
God Bless!
Bree’s Parents
Friday, November 7, 2008 - Lazy Friday/Pray Day
Today I was pretty lazy. I only had radiation today and some boring history homework stuff. Except for the homework it was a pretty good day. Father Rookey called me today and he prayed for me. He can heal people with prayer – even over the phone. I was supposed to go meet him in October but we had to come to St. Jude to start my treatments and medicine instead. It was really weird because when I got off the phone with him I was really hot. Mom said it’s called the burning and that the Holy Spirit passed through my body. Sounds pretty weird to me. Yesterday I got an autographed photo and swim cap from my idol, Dara Torres. She has won 5 Olympic medals. That was so cool! My parents told me that I am going to have a bunch of visitors for the next week or so that will be fun.
Love, Bree
Note from the parents:
Can you believe we only had 1 appointment today? (Her radiation treatment) We were able to be lazy all morning and Brianna worked on some homework..."boring history stuff."
Yesterday Brianna received an autographed photo and signed swim cap from 5 time Olympic swimmer Dara Torres. Very exciting!
This morning Brianna received a phone call from Fr.Rookey out of Olympia Fields, IL. He is known for his Compassion Ministry and his ability to heal. We had an appointment to meet him and attend a healing mass at the end of October, but had to cancel due to the trip to St. Jude. However, he does offer prayers via phone conferences and he prayed for Brianna. Immediately after hanging up Brianna complained of feeling hot. Those of you that may be of strong Catholic faith might know that the sensation she felt is called, "the burning."(Her stepdad also experienced when Fr. Rookey prayed with him) It was the Holy Spirit entering/passing through Brianna. A couple of minutes later I asked Brianna if she was feeling warm/hot and she said no. Brianna has received an amazing gift/blessing. We look forward to meeting Fr. Rookey when we return home sometime in December.
This weekend and all through next week Brianna will have plenty of visitors. Grandpa Rick, Aunt Faith, Grandma Pat, Grandma & Grandpa Siemann, Bob & Kaitlyn. With all different family members visiting we hope for a light appointment week and the opportunity to get out and experience Memphis.
Thank you for your continued support and all of your love and prayers. We are truly blessed!
Love,
Bree's Parents
Friday, November 7, 2008
Wednesday - Nov. 5
I had a really good weekend and I love my new cell phone cause I get free texting so I can text all my friends and family while I am here. I couldn't stop smiling at my little sister Gianna. It was like having a piece of my home right here with me.
Love,
Brianna
Note from Parents:
The weekend ended quite well for Brianna when we gave Brianna her first cell phone. She gets free texting ( thankfully) and she has had no problem jumping right into connecting back home with family and friends. Brianna also got to spend time with her sister Gianna and we all noticed a nice smile and spark in her attitude. Since Brianna can't go home right now we felt it is best to bring as much of home to her.
Monday and Tuesday were short days from a scheduling perspective and we took her to spend her Target gift card. We took her to the Waffle House but not before we got some sage advice from her stepdad Bob about it! Maria and Gianna said their goodbyes after eating some cold Mickey D's and we took them to the train station to head back to Chicago. They will be back soon over Thanksgiving as will Bob and Kaitlyn and we will all have a great Thanksgiving together!
Brianna is starting to find that her schedule and her days are coming into somewhat of a normal routine if you will. If there is one thing we have learned is that once cancer affects your family there ends the prospect of things being the way they used to be but rather you work to find a "new normal". While it is comforting for her to have her parents and stepparents behind her...We think it has been even more uplifting for her to recieve the love and support of all of you. For that we say THANK YOU. Nothing we can do could show all of you just how appreciative we are but we will continue to try!
Love,
Bree's Parents
Love,
Brianna
Note from Parents:
The weekend ended quite well for Brianna when we gave Brianna her first cell phone. She gets free texting ( thankfully) and she has had no problem jumping right into connecting back home with family and friends. Brianna also got to spend time with her sister Gianna and we all noticed a nice smile and spark in her attitude. Since Brianna can't go home right now we felt it is best to bring as much of home to her.
Monday and Tuesday were short days from a scheduling perspective and we took her to spend her Target gift card. We took her to the Waffle House but not before we got some sage advice from her stepdad Bob about it! Maria and Gianna said their goodbyes after eating some cold Mickey D's and we took them to the train station to head back to Chicago. They will be back soon over Thanksgiving as will Bob and Kaitlyn and we will all have a great Thanksgiving together!
Brianna is starting to find that her schedule and her days are coming into somewhat of a normal routine if you will. If there is one thing we have learned is that once cancer affects your family there ends the prospect of things being the way they used to be but rather you work to find a "new normal". While it is comforting for her to have her parents and stepparents behind her...We think it has been even more uplifting for her to recieve the love and support of all of you. For that we say THANK YOU. Nothing we can do could show all of you just how appreciative we are but we will continue to try!
Love,
Bree's Parents
Monday - Nov. 3 - FUN Day
I didn't have to do much at the hospital today and that was good cause I got to spend the day with my dad, my stepmom and my sister Gianna. She is only 2 and she's so cute she makes me smile and that really feels good! Also, I GOT A CELLPHONE! YIPPEEEEE! I texted my friends and everybody all day and wouldn't put it down. I got to go to Target and spend a gift card from the Lincoln-Way High School. It didn't take long to spend it, that's for sure. When we got back to the Ronald McDonald house my mom asked me if I knew how many people cared about me. I don't really know, but all I know is it's really amazing how many cards and things people are sending me and it keeps me smiling and I can almost forget for a little while that I'm not well yet. But I'm working on it! Thank you everybody for caring about me.
Love,
Brianna
Note from Parents:
Bree was very excited to get out and have a nice afternoon. The weather is sunny and in the 70's and we enjoy the fresh air!
When we returned to the RMH this evening we picked up more mail. We asked Brianna if she ever had any idea how many people really care about her and she said, "I really didn't have any idea!" With the gift baskets, messages, cards, etc. she is starting to realize the extent of people who care about her and are praying for her! It was so great and warmed our hearts to hear her admit and to see her expression when she said she had no idea how many people care about her!!
Thank you everyone for all the things (big and small) that you do every day to show you care! Brianna is staying strong despite feeling homesick, but November is a very busy month with numerous family members coming to visit. She will have family coming and going throughout the month to keep her occupied and shower her with hugs and kisses.
God Bless!
Brianna's Parents
Love,
Brianna
Note from Parents:
Bree was very excited to get out and have a nice afternoon. The weather is sunny and in the 70's and we enjoy the fresh air!
When we returned to the RMH this evening we picked up more mail. We asked Brianna if she ever had any idea how many people really care about her and she said, "I really didn't have any idea!" With the gift baskets, messages, cards, etc. she is starting to realize the extent of people who care about her and are praying for her! It was so great and warmed our hearts to hear her admit and to see her expression when she said she had no idea how many people care about her!!
Thank you everyone for all the things (big and small) that you do every day to show you care! Brianna is staying strong despite feeling homesick, but November is a very busy month with numerous family members coming to visit. She will have family coming and going throughout the month to keep her occupied and shower her with hugs and kisses.
God Bless!
Brianna's Parents
Thursday, November 6, 2008
Saturday, November 1 - Surprises!
Today my FIRST surprise was a knock at the door and when I opened it, there was my step-dad! Boy was I surprised and then I got the biggest hug! It was a great way to start the day. Then I got a HUGE care basket from Lincoln-Way Central High School with an amazing bunch of presents. I can't write a thank you note that is big enough or good enough so I am making a special thank you with a camera. You will just have to wait and see what it is! I got to go the mall today and I went to Build-a-Bear and Aeropostle and Claire's and The Gap. I got really tired real fast but I sure had a great time and it was fun to pick out clothes with the gift card from the Nollen family. Thank you SO much!
Love,
Bree
From Parents:
We decided that today would be a great day to go to the mall. Brianna purchased a stylish white vest and bought a t-shirt!) Tonight another group of volunteers hosted a dinner. We opted to stay in as the dinners that people cook here are outstanding! You meet amazing people make a difference. This particular couple (along with their friends) has hosted a dinner here at the Memphis Ronald McDonald House 1 Saturday a month for 14 years!!! We sat near a gentleman who has tagged along with this couple on several of these missions and found out he lived in Naperville for a period of time many, many years ago! He is another individual who is exceptional in his ability to see blessings and God's grace in ways others may not.
Finally, we would like to tell everyone about some very important events that took place over the last two days!! Brianna's primary care physician called us two days ago and told us that she has another patient (5 year old boy) just diagnosed with the same exact diagnosis. We have made contact with his mother. In Naperville (population 150,000) we have a family that is in the exact same situation and we must believe that there is something greater happening here than just coincidence. We will go meet them upon our return. They live less than 2 miles from our house. In addition to learning about this, last night we were speaking with another mother here at RMH and we learned that both our children have the same diagnosis (she has a 9 year old boy)and as we were discussing the terrible tasting liquid chemo medicine, another mother asked us what we were discussing and learned her 4 year old boy has the same!! Within 2 days we met/learned of 3 other families. When we made our decision to bring Brianna to St. Jude to try to get her in the experimental trial and there were only 3 spots left...we now know who those children are....Over the past two days we have had an enormous feeling of being blessed to have made these connections as there is a support system building beyond what we would have ever expected!! There is a plan and we have to believe everyday that God is working on his miracle!!
Thank you all for your continued prayers and support!! We learn that our prayer network is growing more and more every day. Thank you from the bottom of our hearts!
Brianna's Parents
Love,
Bree
From Parents:
We decided that today would be a great day to go to the mall. Brianna purchased a stylish white vest and bought a t-shirt!) Tonight another group of volunteers hosted a dinner. We opted to stay in as the dinners that people cook here are outstanding! You meet amazing people make a difference. This particular couple (along with their friends) has hosted a dinner here at the Memphis Ronald McDonald House 1 Saturday a month for 14 years!!! We sat near a gentleman who has tagged along with this couple on several of these missions and found out he lived in Naperville for a period of time many, many years ago! He is another individual who is exceptional in his ability to see blessings and God's grace in ways others may not.
Finally, we would like to tell everyone about some very important events that took place over the last two days!! Brianna's primary care physician called us two days ago and told us that she has another patient (5 year old boy) just diagnosed with the same exact diagnosis. We have made contact with his mother. In Naperville (population 150,000) we have a family that is in the exact same situation and we must believe that there is something greater happening here than just coincidence. We will go meet them upon our return. They live less than 2 miles from our house. In addition to learning about this, last night we were speaking with another mother here at RMH and we learned that both our children have the same diagnosis (she has a 9 year old boy)and as we were discussing the terrible tasting liquid chemo medicine, another mother asked us what we were discussing and learned her 4 year old boy has the same!! Within 2 days we met/learned of 3 other families. When we made our decision to bring Brianna to St. Jude to try to get her in the experimental trial and there were only 3 spots left...we now know who those children are....Over the past two days we have had an enormous feeling of being blessed to have made these connections as there is a support system building beyond what we would have ever expected!! There is a plan and we have to believe everyday that God is working on his miracle!!
Thank you all for your continued prayers and support!! We learn that our prayer network is growing more and more every day. Thank you from the bottom of our hearts!
Brianna's Parents
Friday, October 31-Happy Halloween Blast!
Today I had an MRI (it's like an x-ray) for 2 hours. I got to sleep through it and when I woke up I was really hungry. I was a little sleepy still, so Mom pushed me around to see all the Halloween decorations in a wheelchair. It's kind of fun being pushed around and not having to walk (sorry, Mom!) Mom told me they were supposed to have some cool Halloween stuff and we looked around and it was really amazing! It was more like going to an amusement park than a hospital. There was so much stuff I'm gonna let Mom tell about it cause I'm too tired.
Thanks again to EVERYBODY for remembering me and sending things so I don't get so homesick or bored! Love, Bree
Note from Parents:
Brianna's 2 hour MRI went well and she recovered with her hearty appetite. Since she was still groggy from the sedation I wheeled her around the Halloween happenings in a wheelchair. (Actually, I think she just likes to be pushed around...and that's o.k. with me!)
I mentioned the rumors I heard about St. Jude and what they put on for Halloween. We discovered firsthand that these are not rumors, rather major understatements about the great lengths they go to for kids!!! Brianna liked everything, but doesn't show too much emotion. (I think being a pre-teen keeps her from showing too much excitement about a 'kid' holiday!) The various departments of the hospital had various themes. Our day started out with the MRI. The MRI/x-ray department had an, 'Under the Sea' theme. Brianna's nurse from anesthesia was dressed in footy p.j.'s with her hair in pigtails. The anesthesia department theme was 'Sleepy Time.' (They had a sleepover party station set up outside the cafeteria where you could trick or treat.) She woke up in recovery inside of a beehive where all nurses were dressed as busy bees. She left recovery through the honeycomb hallway. After lunch we came out to find Harry Potter and friends. As we continued our tour, we visited 'New York City,' 'Old McDonald's Farm,' 'Willy Wonka's Chocolate Factory,' & ended our day in radiation oncology set us as 'Sesame Street'....brought to you by the letters "R and O"! Those were only the BIG themes as we could easily count over 50 other mini-stations like, 'The God Squad,' 'Olympic Spirit,' 'CSI,' 'Disney,' 'King Tut,' 'Pirate Ship,' 'Toy Story,' etc. Keep in mind this was only on the first floor!!
I took a few pictures with a disposable camera....sorry, you'll have to wait for the film to be developed and scanned before we can add the pictures to the site. Who would have thought that you would need to pack a camera for a trip to St. Jude?!
Thank you so much for all of your support. Brianna continues to receive care packages and tons of cards and she wonders what we are going to do with all of the candy!? I said we can put some down in the common area at the Ronald McDonald House, but prefers to keep it and bring it home! Typical kid...doesn't want to share her candy! :-)
We can not put into words how much it means to us to have so many people praying for Brianna. We are all so grateful for everything you do, big and small!! Thank you to all of our friends for sending encouraging words. Thank you to our neighbors in Timber Creek that continue to bring meals to Bob and the kids. Thank you to the Lincoln-Way family for supporting us in so many ways (cards, gifts, donations, kind words, etc.)!! I know there are a ton of other people and groups deserving of many thanks and we will promise to find some way to give you personal thanks for all that you do!!
Love and Prayers,
Brianna's Parents and All Her Family
Thanks again to EVERYBODY for remembering me and sending things so I don't get so homesick or bored! Love, Bree
Note from Parents:
Brianna's 2 hour MRI went well and she recovered with her hearty appetite. Since she was still groggy from the sedation I wheeled her around the Halloween happenings in a wheelchair. (Actually, I think she just likes to be pushed around...and that's o.k. with me!)
I mentioned the rumors I heard about St. Jude and what they put on for Halloween. We discovered firsthand that these are not rumors, rather major understatements about the great lengths they go to for kids!!! Brianna liked everything, but doesn't show too much emotion. (I think being a pre-teen keeps her from showing too much excitement about a 'kid' holiday!) The various departments of the hospital had various themes. Our day started out with the MRI. The MRI/x-ray department had an, 'Under the Sea' theme. Brianna's nurse from anesthesia was dressed in footy p.j.'s with her hair in pigtails. The anesthesia department theme was 'Sleepy Time.' (They had a sleepover party station set up outside the cafeteria where you could trick or treat.) She woke up in recovery inside of a beehive where all nurses were dressed as busy bees. She left recovery through the honeycomb hallway. After lunch we came out to find Harry Potter and friends. As we continued our tour, we visited 'New York City,' 'Old McDonald's Farm,' 'Willy Wonka's Chocolate Factory,' & ended our day in radiation oncology set us as 'Sesame Street'....brought to you by the letters "R and O"! Those were only the BIG themes as we could easily count over 50 other mini-stations like, 'The God Squad,' 'Olympic Spirit,' 'CSI,' 'Disney,' 'King Tut,' 'Pirate Ship,' 'Toy Story,' etc. Keep in mind this was only on the first floor!!
I took a few pictures with a disposable camera....sorry, you'll have to wait for the film to be developed and scanned before we can add the pictures to the site. Who would have thought that you would need to pack a camera for a trip to St. Jude?!
Thank you so much for all of your support. Brianna continues to receive care packages and tons of cards and she wonders what we are going to do with all of the candy!? I said we can put some down in the common area at the Ronald McDonald House, but prefers to keep it and bring it home! Typical kid...doesn't want to share her candy! :-)
We can not put into words how much it means to us to have so many people praying for Brianna. We are all so grateful for everything you do, big and small!! Thank you to all of our friends for sending encouraging words. Thank you to our neighbors in Timber Creek that continue to bring meals to Bob and the kids. Thank you to the Lincoln-Way family for supporting us in so many ways (cards, gifts, donations, kind words, etc.)!! I know there are a ton of other people and groups deserving of many thanks and we will promise to find some way to give you personal thanks for all that you do!!
Love and Prayers,
Brianna's Parents and All Her Family
Friday, October 31, 2008
Thursday, October 30, 2008
I didn’t feel very good today – my stomach was hurting. I am just so ready to get all this over with and go home. I miss my friends and my family a lot. Tomorrow should be pretty fun though because all the doctors and nurses get dressed up for Halloween and all the kids can trick or treat. I probably will but I already have enough candy for 3 Halloweens!!
Note from Bree’s Parents:
Brianna’s appointments moved along very quickly today. When it was time for her radiation treatment she started to feel a little bit nauseated….we don’t believe it was from any medication or treatment, rather her anxiety or nerves about being homesick. She is really doing her best to be strong and we can be so proud of how she is determined to “just get it over with”! She did perk up a little bit and we went back to the Ronald McDonald House to relax. We decided to wait until after dinner to tell her she has another 2 hour MRI tomorrow morning and will have to be sedated again. It should be an interesting night and early morning because the steroid medication gives her a ravenous appetite and she has been having a few snacks throughout the evening hours to get her through…we just hope that they get her in to her sedation appointment asap so she can be in her best spirit, ‘get it over with’. I am sure she will be looking forward to a big lunch after she recovers.
We hear that St. Jude puts on an unbelievable Halloween Party all throughout the hospital. Every wing has its own theme, doctors/nurses/patients/etc. all get dressed up and kids can trick or treat all afternoon. (Not that Bree needs anymore candy…according to her we have enough for 3 Halloweens!)
Thank you again for all of your prayers and support as we appreciate it more than you’ll ever know!
Love to all,
Bree’s Parents
Thursday, October 30, 2008
Early in the week of October 27, 2008
My days are so boring – I have chemo from 8:30 to 9:00 every day, then doctor appointments and then radiation in the afternoon. This week has been a little easier because I didn’t have very many appointments. Halloween is this week too and we got to do some cool stuff. Tuesday we went to a Halloween party at the Target House and Wednesday we went to another one at St. Jude. They were fun. I decorated the door to my room with all the cards and stuff from everybody. It’s pretty cool. Most of the time I either just like to hang out and listen to my iPOD that Grandpa and Grandma Sharp gave me or paint. I am painting a picture right now that I am going to hang in my bedroom when I get home. That’s pretty much all that is going on right now. Thank you for all the cards, letters and signs – they really make me smile. Happy Halloween!
Note from Bree’s parents:
The past couple of days have been easier on Bree due to the decrease of Dr. appointments. It’s been a nice change of pace.
The Halloween party on Tuesday evening at the Target House was nice. It’s a very nice facility where longer term patients live with their families. The Ronald McDonald House is closer to St. Jude’s than the Target House. While there we met some other families and had a nice meal. We attended the Halloween party on the St. Jude campus after Bree’s physical therapy and radiation treatment on Wednesday.
The cards, letters and signs that you all have sent, Bree now has plastered on her door. She loves them all and they make her feel so much better to see them. She can’t believe how many people care about her. So thank you for making our little girl smile.
Thanks to all for checking in! Happy Halloween!
Love,
Bree’s parents
Monday, October 27, 2008
Saturday, October 25, 2008
The Memphis Zoo was so much fun with my grandparents, dad and mom. Mom was feeling a little better and got to go with us. My favorites are the giraffes and the panda bears. I have pictures of the giraffes on my website – they’re on the "My Friends and Family” page. It was a long day and I was really tired when we got back so I took a nap. The radiation treatments make me really tired these days. Before I laid down though I had to have some of the pistachio jello that me and mom made the other day. I love it! Today was a good day!
Note from Bree’s parents:
As Brianna said “today was a good day” and a great way for her to get her mind off of all the other stuff. As parents of a child that is experiencing this…We just wanted to tell all of you how absolutely uplifting it is to see how much support that you all are giving. Thank you. Words cannot express how grateful we are.
Love to all,
Bree’s parents
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