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!
Tuesday, November 25, 2008
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
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