Hi everybody -
Yesterday Mom took me to Edward Hospital for another MRI. This one lasted 3 hours but I was asleep. When it was over we went out for lunch. I was pretty sick to my stomach so we went back home and I went to sleep.
Note from Brianna's Parents:
Children's Memorial read the scan today around midday and called shortly thereafter to give the results. The MRI confirmed what we were pretty sure was occurring. We found that her pain along the spine was due to the cancer spreading to the spine. To say that this news was a surprise would not be accurate because Brianna was telling us of her backache pain that was primarily along the spine.
Brianna will be temporarily stopping the Avastin/CPT-11 treatments and instead be starting about a 4 - 6 week radation treatment plan that will be focused on the spine. We will be monitoring her pain level and giving her the appropriate dosage as directed by the doctors. We are going to be figuring out where in the next couple days. Hopefully we can find a facility closer to home that she can take the radiation treatments as opposed to driving 1 1/2 hours each way to Northwestern Memorial Hospital where she could get radiation treatments if we wanted to.
This weekend Brianna will have her Grandma and Grandpa Sharp and her Aunt Faith and Aunt Julie come into town to visit this weekend. Also her Aunt Lisa and cousin Braeden and Hailee will be flying in town Thursday night and staying the weekend to visit with her as well.
We appreciate all the thoughts and prayers for Brianna as those are what help sustain us through each day. We appreciate all that everyone has done for us as a family and will continue to do for us as a family. It can be hard to stay focused at times but everytime we see Brianna still having good days where she is her cheerful, bubbly smiley self we are reminded that we have the strongest daughter in the world. She has been an inspiration to us as her parents and we are thankful that we are lucky enough to be her parents. She is truly amazing.
Please keep Brianna, Max, Kole, Alexis, Andrew, Caleb and all the children that are the warriors that fight the monster that is pediatric brain cancer every day. We are in awe of all of those children!
Thank you again for stopping in to check in on Brianna !!!
With hope and gratitude,
Matthew, Jennifer, Brianna and the rest of the family!
Thursday, April 30, 2009
Friday, April 24, 2009
Healing Prayers over the Weekend
Hi Everybody -
Mom and I are going to a religious retreat with Aunt Georgia. I get to meet a lady named Colleen Willard. She was healed from a brain tumor they couldn't operate on. I also get to meet Mother Nadine from the Intercessors of the Lamb in Omaha and a visionary. We are going to pray a lot and it will be really good to be with people who have strong faith.
Mom can explain it better.
Love,
Bree
Note from mom Jennifer;
This weekend at the retreat we will be focusing on God's mercy and for the laying of hands to physically heal Brianna. Please join us in our prayers this weekend that Brianna will be blessed with God's mercy and grace!
I previously mentioned how Brianna has deepened her faith and that her personality is one to always put others first. Two more examples I will share: First, Brianna was in the ER one night with an excrutiating headache and she said, "Mom, I want to say something, but I can't." I said, "What do you mean?" She responded, "I really need to say something, but God will be mad at me." I finally convinced her that she can tell me and she stated, "I feel like hell!" Another example was with her most recent episode which was the worst ever as she was not able to find any relief. She noticed that Bob had become teary eyed and grab him and told him how much she was sorry for upsetting him! If you recall, she did that to me as well...based on her level of pain it's hard to believe she could think about our feelings.
Today, Brianna and I are going to visit my school (Lincoln-Way North High School) so we can deliver Brianna Brigade t-shirts to visit and meet with a lot of my friends who have been an unbelievable support network. They have been so generous and kind during this difficult period and it is very important for us to give and receive LOTS OF HUGS!!
We had a very speedy delivery of the chicken ginger soup last night, secretly delivered by the "Soup Elf." Brianna could not wait to eat it so she decided it would be her afternoon snack! WOW, that was fast service as I only posted a request for the recipe and several hours later the fresh soup was delivered!! Thank you!!
With the long weekend religious retreat and the fact that Brianna will undergo a 3 hour MRI for her total spine, you will have to wait until Monday afternoon to hear from us as to how well things went for us.
Finally, a friend of the family, Katie Slou is organizing a fundraiser where we will be selling spirit cups. I am including her email as a contact in case you have any questions or are interested in obtaining an order form. Proceeds from the sale of the spirit cups will go towards the "Brianna Sharp Benefit Fund." We would like to thank you in advance for your support. (I hear the cups are REALLY cool and hope that you will consider contacting Katie. Her email is listed below:
logan216@sbcglobal.net (Katie Slou)
God bless you all for your kindness and generosity. We are most appreciative of your prayers and words of encouragement as they allow us to face each day with amazing strength and courage. Brianna had a good day yesterday (Wed. she slept most of the day) as Aunt Amy and her cousin Colleen treated us to lunch at Pizza Fusion (DELICIOUS) and she got her exercise by helping me shop at Whole Foods.
"Patience is having faith in God's timing!" Thank you Joellyn for the line about how God laughs whenever anyone tries to spell out timelines. It made me laugh and helped me realize that the news we received from doctors giving us a timeline is a joke!! Only God knows His plans for Brianna and the fact she is so strong tells us that anyone who is given a timeline needs to be patient, take things one day at a time, and live every moment to the fullest, while continuing to believe that His plan is perfect and Brianna will always be safe!
God bless!!Jennifer
})
Mom and I are going to a religious retreat with Aunt Georgia. I get to meet a lady named Colleen Willard. She was healed from a brain tumor they couldn't operate on. I also get to meet Mother Nadine from the Intercessors of the Lamb in Omaha and a visionary. We are going to pray a lot and it will be really good to be with people who have strong faith.
Mom can explain it better.
Love,
Bree
Note from mom Jennifer;
This weekend at the retreat we will be focusing on God's mercy and for the laying of hands to physically heal Brianna. Please join us in our prayers this weekend that Brianna will be blessed with God's mercy and grace!
I previously mentioned how Brianna has deepened her faith and that her personality is one to always put others first. Two more examples I will share: First, Brianna was in the ER one night with an excrutiating headache and she said, "Mom, I want to say something, but I can't." I said, "What do you mean?" She responded, "I really need to say something, but God will be mad at me." I finally convinced her that she can tell me and she stated, "I feel like hell!" Another example was with her most recent episode which was the worst ever as she was not able to find any relief. She noticed that Bob had become teary eyed and grab him and told him how much she was sorry for upsetting him! If you recall, she did that to me as well...based on her level of pain it's hard to believe she could think about our feelings.
Today, Brianna and I are going to visit my school (Lincoln-Way North High School) so we can deliver Brianna Brigade t-shirts to visit and meet with a lot of my friends who have been an unbelievable support network. They have been so generous and kind during this difficult period and it is very important for us to give and receive LOTS OF HUGS!!
We had a very speedy delivery of the chicken ginger soup last night, secretly delivered by the "Soup Elf." Brianna could not wait to eat it so she decided it would be her afternoon snack! WOW, that was fast service as I only posted a request for the recipe and several hours later the fresh soup was delivered!! Thank you!!
With the long weekend religious retreat and the fact that Brianna will undergo a 3 hour MRI for her total spine, you will have to wait until Monday afternoon to hear from us as to how well things went for us.
Finally, a friend of the family, Katie Slou is organizing a fundraiser where we will be selling spirit cups. I am including her email as a contact in case you have any questions or are interested in obtaining an order form. Proceeds from the sale of the spirit cups will go towards the "Brianna Sharp Benefit Fund." We would like to thank you in advance for your support. (I hear the cups are REALLY cool and hope that you will consider contacting Katie. Her email is listed below:
logan216@sbcglobal.net (Katie Slou)
God bless you all for your kindness and generosity. We are most appreciative of your prayers and words of encouragement as they allow us to face each day with amazing strength and courage. Brianna had a good day yesterday (Wed. she slept most of the day) as Aunt Amy and her cousin Colleen treated us to lunch at Pizza Fusion (DELICIOUS) and she got her exercise by helping me shop at Whole Foods.
"Patience is having faith in God's timing!" Thank you Joellyn for the line about how God laughs whenever anyone tries to spell out timelines. It made me laugh and helped me realize that the news we received from doctors giving us a timeline is a joke!! Only God knows His plans for Brianna and the fact she is so strong tells us that anyone who is given a timeline needs to be patient, take things one day at a time, and live every moment to the fullest, while continuing to believe that His plan is perfect and Brianna will always be safe!
God bless!!Jennifer
})
Fundraiser on Saturday - April 25
Note from dad Matt -
On Saturday from 1:00 - 4:00pm at Danny's Pub and Grill in Naperville we are having a fundrasier for Brianna! Its $20 per person( $10 goes to Brianna) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger,chicken or deli sandwich with french fries, soup or salad. We will be raffling off some great prizes. Come on out! It should be a great time! If you can't make it and still want to help then go to www.curebrianna.com to find out how!
Host: Danny's Pub and Grill/ Lori Young-Higaki
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and Grill
Street: 1550 N Rt 59
City/Town: Naperville, IL
Also Good Luck to the CureBrianna run team that will be running in the ABTA 5K walk and run tomorrow at Soldier Field in the morning! I know that I couldn't pull that off well because I was out of breath just jogging from the Grizzly House to the Chili Care Center at St. Jude!
Have a great day everyone!
From Brianna's dad, Matt
On Saturday from 1:00 - 4:00pm at Danny's Pub and Grill in Naperville we are having a fundrasier for Brianna! Its $20 per person( $10 goes to Brianna) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger,chicken or deli sandwich with french fries, soup or salad. We will be raffling off some great prizes. Come on out! It should be a great time! If you can't make it and still want to help then go to www.curebrianna.com to find out how!
Host: Danny's Pub and Grill/ Lori Young-Higaki
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and Grill
Street: 1550 N Rt 59
City/Town: Naperville, IL
Also Good Luck to the CureBrianna run team that will be running in the ABTA 5K walk and run tomorrow at Soldier Field in the morning! I know that I couldn't pull that off well because I was out of breath just jogging from the Grizzly House to the Chili Care Center at St. Jude!
Have a great day everyone!
From Brianna's dad, Matt
First Day of New Treatment - April 21
Hi everybody -
I started my new treatment today at Children's Memorial hospital. I like St. Jude a whole lot better. First of all, it took almost 2 hours to get to the hospital cause there was so much traffic. I was bored ALL day! I wish I could just go back to St Jude. Plus on the way home I was really sick to my stomach but they said its the medicine that does that. After a while I felt better but I wasn't very hungry. I'm just tired so I'll let my parents finish this.
Note from mom Jennifer:
Brianna is right, we were definitely spoiled at St. Jude. We are not saying that Children's is not a wonderful place, but what you experience at St. Jude can not be put into words. While heading home during rush hour traffic, Brianna said she would rather fly back and forth to St. Jude and that she doesn't like CMH. I am sure her irritability and most of the words can be chalked up to her emotions/feelings pouring out as she begins a new treatment. She felt terribly nauseated on the way home but did not vomit. As frustrating as it is to listen to Brianna complain about anything and everything I have remind myself that it's not Brianna...it's the tumor and/or the medication. Her nausea only lasted for an hour or two and later that evening she was talkative and laughing hysterically as she watched Funniest Home Videos. She did not feel up to eating any dinner so she had some applesauce before bed. Brianna slept with me and as she was falling asleep began listing all of the foods she was craving. Around 2 AM she woke up and decided she was ready to eat. I went downstairs to get her a bowl of cereal and some nausea medicine. She slept off and on until 11 AM where she finally perked up and made Miso Soup with Seaweed for lunch. (I find it hard to believe that she can complain about every single thing on her diet that Bob and I find delicious, yet she enjoys the most disgusting soup I have ever smelled or tasted!!)
IMPORTANT: THE ANONYMOUS CHEF OF THE GINGER, CHICKEN NOODLE SOUP LEFT A COUPLE MONTHS AGO IN OUR COOLER NEEDS TO IDENTIFY THEMSELVES OR LEAVE AN ANONYMOUS RECIPE!!! IT'S BRIANNA'S FAVORITE DISH AND SHE CONTINUES TALKING/ASKING ABOUT IT!!
I am going to let Matt take over and talk about the medical part of it all and what he knows....
Note from dad Matt -
Alright.... I guess I am the relief pitcher here so here it goes.
We got in at 8:30am and met with a nurse to take all the vital signs, height, weight, etc. Then she had a blood draw to get sent to the lab so that we could make sure her WBC and Platelet levels were good enough to start treatment. That took about a half an hour before the results came back and all was fine there.
We were lead back to the Day Hospital where Brianna was hooked up an an IV to make sure she was hydrated with fluids for an hour before the CPT-11 (one component of the treatment) was to be administered. CPT-11 is also known as Irinotecan which is meant to damage the DNA and RNA in each cancer cell so that it doesn't have the ability to divide and multiply. That takes about an hour to administer and then more fluids were given before the Avastin was admisitered and that again was a little over an hour. Finally a fluid IV and an antibiotic was given and that took 2 hours so needless to say it was a rather long day. For the next day or two she may experience some nausea and fatigue.. there are other side effects but those two are the most common.
One thing that Brianna was given was MC Contin which is a controlled release of morphine and that should help her feel as comfortable as possible. She has her regular dosage of pain meds if that controlled release doesn't control a larger pain episode that Brianna might experience.
We are planning on doing an MRI of the spine just to get some more insight into what might be causing her back pain. We are still committed to continue to look at all options including biopsy. I believe that the only way to get to a cure of this disease to biopsy the tissue to see what is actually in the tumor. Other countries like France and Germany already do it as a matter of course when a patient is given this diagnosis. We would just need to find a doctor in the U.S. that would be comfortable with doing the procedure.
We will continue to keep everyone updated as we move forward but we really appreciate everyone stopping in and offering their kind words of encouragement. It gets us through the rough days when Brianna is not feeling so great. It means alot to us.
Matt, Jennifer and Brianna
I started my new treatment today at Children's Memorial hospital. I like St. Jude a whole lot better. First of all, it took almost 2 hours to get to the hospital cause there was so much traffic. I was bored ALL day! I wish I could just go back to St Jude. Plus on the way home I was really sick to my stomach but they said its the medicine that does that. After a while I felt better but I wasn't very hungry. I'm just tired so I'll let my parents finish this.
Note from mom Jennifer:
Brianna is right, we were definitely spoiled at St. Jude. We are not saying that Children's is not a wonderful place, but what you experience at St. Jude can not be put into words. While heading home during rush hour traffic, Brianna said she would rather fly back and forth to St. Jude and that she doesn't like CMH. I am sure her irritability and most of the words can be chalked up to her emotions/feelings pouring out as she begins a new treatment. She felt terribly nauseated on the way home but did not vomit. As frustrating as it is to listen to Brianna complain about anything and everything I have remind myself that it's not Brianna...it's the tumor and/or the medication. Her nausea only lasted for an hour or two and later that evening she was talkative and laughing hysterically as she watched Funniest Home Videos. She did not feel up to eating any dinner so she had some applesauce before bed. Brianna slept with me and as she was falling asleep began listing all of the foods she was craving. Around 2 AM she woke up and decided she was ready to eat. I went downstairs to get her a bowl of cereal and some nausea medicine. She slept off and on until 11 AM where she finally perked up and made Miso Soup with Seaweed for lunch. (I find it hard to believe that she can complain about every single thing on her diet that Bob and I find delicious, yet she enjoys the most disgusting soup I have ever smelled or tasted!!)
IMPORTANT: THE ANONYMOUS CHEF OF THE GINGER, CHICKEN NOODLE SOUP LEFT A COUPLE MONTHS AGO IN OUR COOLER NEEDS TO IDENTIFY THEMSELVES OR LEAVE AN ANONYMOUS RECIPE!!! IT'S BRIANNA'S FAVORITE DISH AND SHE CONTINUES TALKING/ASKING ABOUT IT!!
I am going to let Matt take over and talk about the medical part of it all and what he knows....
Note from dad Matt -
Alright.... I guess I am the relief pitcher here so here it goes.
We got in at 8:30am and met with a nurse to take all the vital signs, height, weight, etc. Then she had a blood draw to get sent to the lab so that we could make sure her WBC and Platelet levels were good enough to start treatment. That took about a half an hour before the results came back and all was fine there.
We were lead back to the Day Hospital where Brianna was hooked up an an IV to make sure she was hydrated with fluids for an hour before the CPT-11 (one component of the treatment) was to be administered. CPT-11 is also known as Irinotecan which is meant to damage the DNA and RNA in each cancer cell so that it doesn't have the ability to divide and multiply. That takes about an hour to administer and then more fluids were given before the Avastin was admisitered and that again was a little over an hour. Finally a fluid IV and an antibiotic was given and that took 2 hours so needless to say it was a rather long day. For the next day or two she may experience some nausea and fatigue.. there are other side effects but those two are the most common.
One thing that Brianna was given was MC Contin which is a controlled release of morphine and that should help her feel as comfortable as possible. She has her regular dosage of pain meds if that controlled release doesn't control a larger pain episode that Brianna might experience.
We are planning on doing an MRI of the spine just to get some more insight into what might be causing her back pain. We are still committed to continue to look at all options including biopsy. I believe that the only way to get to a cure of this disease to biopsy the tissue to see what is actually in the tumor. Other countries like France and Germany already do it as a matter of course when a patient is given this diagnosis. We would just need to find a doctor in the U.S. that would be comfortable with doing the procedure.
We will continue to keep everyone updated as we move forward but we really appreciate everyone stopping in and offering their kind words of encouragement. It gets us through the rough days when Brianna is not feeling so great. It means alot to us.
Matt, Jennifer and Brianna
Tuesday, April 21, 2009
New Photos and New Treatment - April 20
Note from Brianna's mom, Jennifer:
Well, I was finally able to post the NEW PHOTOS from Brianna's surprise 13th birthday party along with her birthday event with Kole (our DIPG buddy from St. Jude who turned 5) and the birthday outing for Brianna and Kaitlyn with Ms. Beauregard at Color Me Mine. I also posted two pictures as proof of Kaitlyn's words written on the patio. She wrote the most loving note to Brianna. You will have to click on the larger images if you want to see the entire picture for each thumbnail. We hope you enjoy as you can see how wonderful she looks and how incredibly happy she was at her surprise party!! Thank goodness we postponed the St. Jude trip for one more week as we were able to enjoy her 13th birthday without any knowledge of the tumor progression.
Unfortunately, we have had a rough two days as she experienced a painful episode Sunday evening and was not feeling well for a majority of the day today. She slept most of the day today with a little energy burst in the early evening when she decided to paint. Around 8:00 this evening she experienced her worst episode ever where the morphine didn't kick in for at least an hour and she was begging for an ambulance to take her to the hospital. It broke our hearts is a huge understatement, as there is nothing we can do but wait for the medicine to kick in. Where it usually only takes 10-15 minutes, tonight it took at least an hour before she found relief and even then her pain was at a 7 for another hour. Recently, her pain is mostly in her back (between her shoulder blades) and when it gets really bad the pain shoots into her head causing the headache to become a 10. Bob and I feel helpless as all we can do is hold her, pray for her, and anxiously wait for the nurse to arrive. The pallative nurse is not left to do anything but talk with her, check vitals, and record the information in the chart. She stayed long enough to make sure Brianna was comfortable and o.k. with her leaving.
After these past two days we can not wait to get to Children's to begin the NEW TREATMENT tomorrow. Please pray that all goes well and that the new treatment proves to be effective and also has limited side effects that she will have to deal with. We are in for a very long day and hope that all goes well. A little prayer to avoid the evening rush hour would also be helpful! :-)
Thank you for your outpouring of love and prayers over the past week and a half as I have been blessed with a huge amount of peace! I have mentioned to some people that I could say I am in shock or denial, but I know that it is neither...it is a grace that is something I can not put into words and I am left feeling that Brianna is now (actually always was) 100% in God's hands and I wouldn't have it any other way. We will pray for a miracle healing, pray that He is guiding the doctors caring for DIPG children, and we will fight as long as she is willing to endure and has the energy and spirit that still shines though. We will also pray that our will is one with God's.
We will be attending the religious healing retreat this weekend and will have a visionary pray over her, along with Colleen Willard (who was miraculously healed from an inoperable brain tumor), and Mother Nadine from the Intecessors of the Lamb in Omaha, Nebraska. Please pray that Brianna be blessed with a healing in mind and body! God bless you all for supporting us through this difficult journey! We are eternally grateful for all of your kind words and unending prayers!
God Bless! Jennifer
Well, I was finally able to post the NEW PHOTOS from Brianna's surprise 13th birthday party along with her birthday event with Kole (our DIPG buddy from St. Jude who turned 5) and the birthday outing for Brianna and Kaitlyn with Ms. Beauregard at Color Me Mine. I also posted two pictures as proof of Kaitlyn's words written on the patio. She wrote the most loving note to Brianna. You will have to click on the larger images if you want to see the entire picture for each thumbnail. We hope you enjoy as you can see how wonderful she looks and how incredibly happy she was at her surprise party!! Thank goodness we postponed the St. Jude trip for one more week as we were able to enjoy her 13th birthday without any knowledge of the tumor progression.
Unfortunately, we have had a rough two days as she experienced a painful episode Sunday evening and was not feeling well for a majority of the day today. She slept most of the day today with a little energy burst in the early evening when she decided to paint. Around 8:00 this evening she experienced her worst episode ever where the morphine didn't kick in for at least an hour and she was begging for an ambulance to take her to the hospital. It broke our hearts is a huge understatement, as there is nothing we can do but wait for the medicine to kick in. Where it usually only takes 10-15 minutes, tonight it took at least an hour before she found relief and even then her pain was at a 7 for another hour. Recently, her pain is mostly in her back (between her shoulder blades) and when it gets really bad the pain shoots into her head causing the headache to become a 10. Bob and I feel helpless as all we can do is hold her, pray for her, and anxiously wait for the nurse to arrive. The pallative nurse is not left to do anything but talk with her, check vitals, and record the information in the chart. She stayed long enough to make sure Brianna was comfortable and o.k. with her leaving.
After these past two days we can not wait to get to Children's to begin the NEW TREATMENT tomorrow. Please pray that all goes well and that the new treatment proves to be effective and also has limited side effects that she will have to deal with. We are in for a very long day and hope that all goes well. A little prayer to avoid the evening rush hour would also be helpful! :-)
Thank you for your outpouring of love and prayers over the past week and a half as I have been blessed with a huge amount of peace! I have mentioned to some people that I could say I am in shock or denial, but I know that it is neither...it is a grace that is something I can not put into words and I am left feeling that Brianna is now (actually always was) 100% in God's hands and I wouldn't have it any other way. We will pray for a miracle healing, pray that He is guiding the doctors caring for DIPG children, and we will fight as long as she is willing to endure and has the energy and spirit that still shines though. We will also pray that our will is one with God's.
We will be attending the religious healing retreat this weekend and will have a visionary pray over her, along with Colleen Willard (who was miraculously healed from an inoperable brain tumor), and Mother Nadine from the Intecessors of the Lamb in Omaha, Nebraska. Please pray that Brianna be blessed with a healing in mind and body! God bless you all for supporting us through this difficult journey! We are eternally grateful for all of your kind words and unending prayers!
God Bless! Jennifer
Monday, April 20, 2009
A Weekend to Remember - April 19
hi everybody!
This weekend was great weekend to remember! Friday night my Aunt Lisa and Uncle Brad paid for a presidential suite at Indian Lakes Resort in Bloomingdale and Kaitlyn and me both got a pedicure and a manicure. Then we rented a moved and got to order room service for dinner! We felt like movie stars it was so much fun! Saturday morning we ordered breakfast in the room and then we played miniature golf and THEN we had Swedish massages!! We LOVED getting those massages! Dad said he would never forget this weekend and he really has to thank my Aunt Lisa and Uncle Brad Ballantine! We love you guys! Thank you for giving us a great night!
Saturday we went to Grandma and Grandpa Spinello's and had a great day. ALL us girls got their hair done by Teresa and Aunt Ania took came and take some great pictures of us and our family!
Well, I'm tired now so my dad can tell you the rest.
Love, Bree
Note from Dad Matt:
I would like to thank Ania taking time out of her busy weekend to make this weekend special and I can't thank her enough! I would also like to thank my inlaws John and Madeline for providing us with a beautiful background that no other portrait studio could ever provide!
After spending that time at their house we went to Dave and Busters and had an awesome time! We ate and played games and Brianna was actually starting to experience some pain at the start of the evening but actually forgot about it when she starting playing games! She even said that it was the best place that she had ever been to play games! Hopefully we can do Dave and Busters Part 2 when Grandma and Grandpa Sharp come up in two weeks because they are looking forward to enjoying a fun filled weekend with their granddaughters.
Sunday was the Blue Hair for Brianna Day! ( as their youngest sister Gianna calls it) My mom was gracious enough to open her home for the fundraiser and so many of Brianna and Kaitlyn's friends and even some of her teachers came out to support Brianna! Earlier in the day she was rather tired but once she saw how many of her friends came to support her she was really happy and perked right up! Ania came again to take some great pictures and Teresa came to put those Blue hair extensions in everyone's hair with help from her daughter ( who is also named Gianna!). It was a great day and we all had a great time! Even I got a hair extension but don't worry I won't post a photo! I don't think my wife likes to look at me with it in my hair!
I would like to thank my wife, Maria for planning this fundraiser! She and Teresa put alot of planning into it and Maria got the food and organized it all! I would also like to thank Brianna's teachers and some staff that came to the event. It really warms the heart to see all that support that Brianna got! Some of the Romeoville Rebel volleyball players came to support Brianna as well! Thank you and we appreciate all of your support!
Brianna's Grandma Close and Aunt Jackie and cousin Lauren came to show support as well. Brianna always loves to spend time with them and was excited to see them come to the event. Brianna was growing tired towards the end of the event and it was time to head home with her mom and Bob. We really appreciate all the help we have received from everyone!
As many of you know, Brianna starts her new round of chemo on Tuesday morning at 8:30. It will last about 5 hours and be administered through her port. We ask that all of you have her in your thoughts on that day as we enter this next part of our journey.
An update will be posted on Wednesday after we get through the events of Tuesday!
Thank you all stopping in and checking in on Brianna!
Thank you for all your support!
Matt, Maria, Brianna and the rest of the gang!
This weekend was great weekend to remember! Friday night my Aunt Lisa and Uncle Brad paid for a presidential suite at Indian Lakes Resort in Bloomingdale and Kaitlyn and me both got a pedicure and a manicure. Then we rented a moved and got to order room service for dinner! We felt like movie stars it was so much fun! Saturday morning we ordered breakfast in the room and then we played miniature golf and THEN we had Swedish massages!! We LOVED getting those massages! Dad said he would never forget this weekend and he really has to thank my Aunt Lisa and Uncle Brad Ballantine! We love you guys! Thank you for giving us a great night!
Saturday we went to Grandma and Grandpa Spinello's and had a great day. ALL us girls got their hair done by Teresa and Aunt Ania took came and take some great pictures of us and our family!
Well, I'm tired now so my dad can tell you the rest.
Love, Bree
Note from Dad Matt:
I would like to thank Ania taking time out of her busy weekend to make this weekend special and I can't thank her enough! I would also like to thank my inlaws John and Madeline for providing us with a beautiful background that no other portrait studio could ever provide!
After spending that time at their house we went to Dave and Busters and had an awesome time! We ate and played games and Brianna was actually starting to experience some pain at the start of the evening but actually forgot about it when she starting playing games! She even said that it was the best place that she had ever been to play games! Hopefully we can do Dave and Busters Part 2 when Grandma and Grandpa Sharp come up in two weeks because they are looking forward to enjoying a fun filled weekend with their granddaughters.
Sunday was the Blue Hair for Brianna Day! ( as their youngest sister Gianna calls it) My mom was gracious enough to open her home for the fundraiser and so many of Brianna and Kaitlyn's friends and even some of her teachers came out to support Brianna! Earlier in the day she was rather tired but once she saw how many of her friends came to support her she was really happy and perked right up! Ania came again to take some great pictures and Teresa came to put those Blue hair extensions in everyone's hair with help from her daughter ( who is also named Gianna!). It was a great day and we all had a great time! Even I got a hair extension but don't worry I won't post a photo! I don't think my wife likes to look at me with it in my hair!
I would like to thank my wife, Maria for planning this fundraiser! She and Teresa put alot of planning into it and Maria got the food and organized it all! I would also like to thank Brianna's teachers and some staff that came to the event. It really warms the heart to see all that support that Brianna got! Some of the Romeoville Rebel volleyball players came to support Brianna as well! Thank you and we appreciate all of your support!
Brianna's Grandma Close and Aunt Jackie and cousin Lauren came to show support as well. Brianna always loves to spend time with them and was excited to see them come to the event. Brianna was growing tired towards the end of the event and it was time to head home with her mom and Bob. We really appreciate all the help we have received from everyone!
As many of you know, Brianna starts her new round of chemo on Tuesday morning at 8:30. It will last about 5 hours and be administered through her port. We ask that all of you have her in your thoughts on that day as we enter this next part of our journey.
An update will be posted on Wednesday after we get through the events of Tuesday!
Thank you all stopping in and checking in on Brianna!
Thank you for all your support!
Matt, Maria, Brianna and the rest of the gang!
Kaitlyn's Writing - April 18
Hi everybody. The first part of this is from my sister Kaitlyn.
Mom saw her writing and so she wanted to put it in here.
Love,
Bree
From Kaitlyn:
BRIANNA ROX AND WILL ALWAYS BE LOVED!!!
BRIANNA IS THE BEST SIS ANYONE CAN HAVE!!! AND I LUV HER WITH ALL MY HEART! HOPE SHE GETS BETTER SOOOON! LUV LUV LUV LUV LUV LUV LUV LUV UUU W/W/ ALL MY HEART! I LOVE BRIANNA AND I HOPE THAT SHE GETS BETTER! I WILL PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!! I LUV BRIANNA WITH ALL MY HEART AND ALWAYS WILL KS
From mom Jennifer:
As I was sitting on the patio yesterday afternoon/evening I noticed that Kaitlyn wrote something in chalk around the entire perimeter of our concrete patio. The above are words Kaitlyn wrote (without a single edit on my part) I walked the entire permimeter taking pictures to capture the entire short story. (If I did not have proof, Brianna would never believe it if I told her...even though I have two other witnesses!)
She signed her initials inside a heart. Anyone that is close to Brianna and Kaitlyn know that they have a "love / hate" relationship, as many sisters have while growing up with a sister close in age. They bicker and poke fun of each other constantly! Well, now I have proof in photos in case she doesn't believe me or my two witnesses. Thank goodness I discovered the words before a good rain washed it away.
It melted my heart to read those words. Please do exactly what Brianna's younger sister (11) says:
"PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!!"
God bless you and thank you for all of your prayers and support!
PS-Our other computer is finally working so I will be posting the long awaited pictures of Brianna's 13th birthday, picture with our buddy Kole, and I might even include a pic of Kaitlyn's words!
Love to all from Mom Jennifer
Mom saw her writing and so she wanted to put it in here.
Love,
Bree
From Kaitlyn:
BRIANNA ROX AND WILL ALWAYS BE LOVED!!!
BRIANNA IS THE BEST SIS ANYONE CAN HAVE!!! AND I LUV HER WITH ALL MY HEART! HOPE SHE GETS BETTER SOOOON! LUV LUV LUV LUV LUV LUV LUV LUV UUU W/W/ ALL MY HEART! I LOVE BRIANNA AND I HOPE THAT SHE GETS BETTER! I WILL PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!! I LUV BRIANNA WITH ALL MY HEART AND ALWAYS WILL KS
From mom Jennifer:
As I was sitting on the patio yesterday afternoon/evening I noticed that Kaitlyn wrote something in chalk around the entire perimeter of our concrete patio. The above are words Kaitlyn wrote (without a single edit on my part) I walked the entire permimeter taking pictures to capture the entire short story. (If I did not have proof, Brianna would never believe it if I told her...even though I have two other witnesses!)
She signed her initials inside a heart. Anyone that is close to Brianna and Kaitlyn know that they have a "love / hate" relationship, as many sisters have while growing up with a sister close in age. They bicker and poke fun of each other constantly! Well, now I have proof in photos in case she doesn't believe me or my two witnesses. Thank goodness I discovered the words before a good rain washed it away.
It melted my heart to read those words. Please do exactly what Brianna's younger sister (11) says:
"PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!!"
God bless you and thank you for all of your prayers and support!
PS-Our other computer is finally working so I will be posting the long awaited pictures of Brianna's 13th birthday, picture with our buddy Kole, and I might even include a pic of Kaitlyn's words!
Love to all from Mom Jennifer
Thursday, April 16, 2009
New Steps in the Journey - April 15
Today my dad is gonna write the blog because it's all about the medical stuff and I don't understand a lot of it. Thank you for visiting my website again.
Love,
Bree
Note from Brianna's Dad (Matt):
We have made a decision in the next steps of Brianna's treatment now that her tumor has been classified as in progression (growing again). Brianna will be going once every two weeks for infusions of Avastin (Bevacizumab) and Irinotecan (CPT-11) that will be given to her through her port that she has had in since late October. Up until now the port has been utilized to draw blood for lab reports and occasionally administer pain meds like she had to have last week. There were no more spots available on the Avastin/CPT-11 trial open so we opted to go off study and hope that Insurance will cover this.
Now that we are not under the constant care of St. Jude and now are with Chicago Children's Memorial this will create a little more work with the insurance company in covering the drugs and such. St. Jude didn't ding the insurance quite as much as they could have and were absoutely on top of every step with me in working on the insurance stuff. Now that we are at Children's Memorial this is where the Medical fund that was established back in October will really come into play. The fund has paid for some of the doctor's vists and a couple of hosptializations back here in Chicago, as well as the supplements and other things relative to Brianna's medical care.
So now even more important are the fundraisers that we will be doing for Brianna's care.
The next one is this Sunday at Brianna's Grandma Pat's house. For $15 you can get a blue hair extension and the proceeds from that will go to The Brianna Sharp Medical Fund!
When: Sunday the 19th of April
Time: 1:00pm to 5:00pm
Where: Brianna's Grandma Pat's house906 Jaipur AvenueNaperville, Illinois
Cost for extension: $15
We will be having my sister in law, Ania there to take pictures of anyone who wants to have their picture taken with Brianna! It should be a great day and we invite everyone to come!\
And we are also doing another fundraiser at Danny's Pub on the 25th in Naperville! Here are the details of that one:
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and GrillStreet: 1550 N Rt 59
City/Town: Naperville, IL
Its $20 per person ($10 goes to Brianna's fund) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger, chicken or deli sandwich with french fries, soup or salad.
We really appreciate the love and support that you all have shown throughout this journey. This has been a roller coaster for all of us and we certainly could not get through each day without all the support from our family and friends and everyone else that has been following her story.
Matt (Brianna's Dad)
Love,
Bree
Note from Brianna's Dad (Matt):
We have made a decision in the next steps of Brianna's treatment now that her tumor has been classified as in progression (growing again). Brianna will be going once every two weeks for infusions of Avastin (Bevacizumab) and Irinotecan (CPT-11) that will be given to her through her port that she has had in since late October. Up until now the port has been utilized to draw blood for lab reports and occasionally administer pain meds like she had to have last week. There were no more spots available on the Avastin/CPT-11 trial open so we opted to go off study and hope that Insurance will cover this.
Now that we are not under the constant care of St. Jude and now are with Chicago Children's Memorial this will create a little more work with the insurance company in covering the drugs and such. St. Jude didn't ding the insurance quite as much as they could have and were absoutely on top of every step with me in working on the insurance stuff. Now that we are at Children's Memorial this is where the Medical fund that was established back in October will really come into play. The fund has paid for some of the doctor's vists and a couple of hosptializations back here in Chicago, as well as the supplements and other things relative to Brianna's medical care.
So now even more important are the fundraisers that we will be doing for Brianna's care.
The next one is this Sunday at Brianna's Grandma Pat's house. For $15 you can get a blue hair extension and the proceeds from that will go to The Brianna Sharp Medical Fund!
When: Sunday the 19th of April
Time: 1:00pm to 5:00pm
Where: Brianna's Grandma Pat's house906 Jaipur AvenueNaperville, Illinois
Cost for extension: $15
We will be having my sister in law, Ania there to take pictures of anyone who wants to have their picture taken with Brianna! It should be a great day and we invite everyone to come!\
And we are also doing another fundraiser at Danny's Pub on the 25th in Naperville! Here are the details of that one:
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and GrillStreet: 1550 N Rt 59
City/Town: Naperville, IL
Its $20 per person ($10 goes to Brianna's fund) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger, chicken or deli sandwich with french fries, soup or salad.
We really appreciate the love and support that you all have shown throughout this journey. This has been a roller coaster for all of us and we certainly could not get through each day without all the support from our family and friends and everyone else that has been following her story.
Matt (Brianna's Dad)
Back to Children's Memorial - April 14
Note from Mom Jennifer:
Tomorrow morning (later this morning) we have an appointment at Children's Memorial-Chicago and hope to learn more about any open trials they have for progressive DIPG. Since we were told the news last Thursday it has been a rough road as we try to regain focus on the next leg of our journey. I admit that I am dumbfounded watching Brianna as her appearance, energy, strength, etc. have much improved, yet we received news that no parent should ever have to hear and for the first time we were given a timeline that we will once again choose to ignore.
Matt can fill you in about the research but my focus is on taking care of Brianna on a daily basis. We have decided that Brianna will no longer attend school (she happily agreed) and will receive homebound instruction (hopefully from Mrs. Romano) as there is a possibility of experiencing a seizure. My goal now is to figure out how to keep her busy enough to not allow her time to worry about her tumor. She knows the tumor is growing and that we are going to try to find a new medicine. She is so glad she no longer has to endure the daily, liquid chemo medicine (we opted to call it crap) that she matter-of-factly states, "The tumor is growing, but at least I don't have to take the crap medicine anymore." Since she is older than most kids that were on the trial she was asked to describe or compare what the medicine tasted like and she said, "nail polish remover or dirty sink water." The doctor said the only other description of the taste was a boy who said, "poop" so I guess we gave the med the right nickname.
The kids enjoyed the holiday while the adults did their best to try to forget about the recent news. I continue to watch her and wonder how she could be so sick when she looks so good! The only thing we have noticed lately is that she seems to become easily fatigued. Another reason why I want to keep her busy, but not push too hard so that she experiences any other symptoms.
We had two things take place yesterday afternoon, the first of which I dreaded and the other I will speak about in a minute. We were told to begin to establish a relationship with a 'hospice' nurse so that Brianna would be comfortable. Though I had to listen and answer questions I don't think I got anything out of the conversation except that we are not considered 'hospice' rather 'pallative'. The difference is that we are still seeking or continuing radiation or chemotherapy treatments and this type of care allows a nurse to come to the home and for us to have access to immediate care at home rather than having to run Brianna to numerous appointments and ER visits. They also have social workers, chaplains, etc. available. We are not giving up the fight and though I am exhausted and drained in every way, I have a HUGE support network to continue to offer words of encouragement and hope. Thank you everyone for your wonderful, kind words and for the conversations, either in person, phone, email!!
The highlight of Monday afternoon was when I took the girls to meet Brianna's teacher at Color Me Mine. Ms. B wanted to treat them for their birthday gifts. Brianna chose a penguin, Kaitlyn a set of coasters, while I opted out...I have learned from experience that Kaitlyn will always ask for help finishing a project. This was a wonderful idea as WE HAD A BLAST sharing stories and getting a chance to take our minds off of her illness. Thank you Ms. B!!
We want to thank you for your continued prayers and support! I noticed that tons of people joined our carepage Monday night and I want to let them know that we appreciate their support...I was shocked watching the visitor total run up...it went on for a few hours!! It did my heart well to know so many people are checking on Brianna! God Bless!!
Love, Brianna's Mom Jennifer
Tomorrow morning (later this morning) we have an appointment at Children's Memorial-Chicago and hope to learn more about any open trials they have for progressive DIPG. Since we were told the news last Thursday it has been a rough road as we try to regain focus on the next leg of our journey. I admit that I am dumbfounded watching Brianna as her appearance, energy, strength, etc. have much improved, yet we received news that no parent should ever have to hear and for the first time we were given a timeline that we will once again choose to ignore.
Matt can fill you in about the research but my focus is on taking care of Brianna on a daily basis. We have decided that Brianna will no longer attend school (she happily agreed) and will receive homebound instruction (hopefully from Mrs. Romano) as there is a possibility of experiencing a seizure. My goal now is to figure out how to keep her busy enough to not allow her time to worry about her tumor. She knows the tumor is growing and that we are going to try to find a new medicine. She is so glad she no longer has to endure the daily, liquid chemo medicine (we opted to call it crap) that she matter-of-factly states, "The tumor is growing, but at least I don't have to take the crap medicine anymore." Since she is older than most kids that were on the trial she was asked to describe or compare what the medicine tasted like and she said, "nail polish remover or dirty sink water." The doctor said the only other description of the taste was a boy who said, "poop" so I guess we gave the med the right nickname.
The kids enjoyed the holiday while the adults did their best to try to forget about the recent news. I continue to watch her and wonder how she could be so sick when she looks so good! The only thing we have noticed lately is that she seems to become easily fatigued. Another reason why I want to keep her busy, but not push too hard so that she experiences any other symptoms.
We had two things take place yesterday afternoon, the first of which I dreaded and the other I will speak about in a minute. We were told to begin to establish a relationship with a 'hospice' nurse so that Brianna would be comfortable. Though I had to listen and answer questions I don't think I got anything out of the conversation except that we are not considered 'hospice' rather 'pallative'. The difference is that we are still seeking or continuing radiation or chemotherapy treatments and this type of care allows a nurse to come to the home and for us to have access to immediate care at home rather than having to run Brianna to numerous appointments and ER visits. They also have social workers, chaplains, etc. available. We are not giving up the fight and though I am exhausted and drained in every way, I have a HUGE support network to continue to offer words of encouragement and hope. Thank you everyone for your wonderful, kind words and for the conversations, either in person, phone, email!!
The highlight of Monday afternoon was when I took the girls to meet Brianna's teacher at Color Me Mine. Ms. B wanted to treat them for their birthday gifts. Brianna chose a penguin, Kaitlyn a set of coasters, while I opted out...I have learned from experience that Kaitlyn will always ask for help finishing a project. This was a wonderful idea as WE HAD A BLAST sharing stories and getting a chance to take our minds off of her illness. Thank you Ms. B!!
We want to thank you for your continued prayers and support! I noticed that tons of people joined our carepage Monday night and I want to let them know that we appreciate their support...I was shocked watching the visitor total run up...it went on for a few hours!! It did my heart well to know so many people are checking on Brianna! God Bless!!
Love, Brianna's Mom Jennifer
A Very Difficult Update - April 10
Update from Brianna's Dad Matt:
I am going to be brief with this update as much as I can....
Brianna and Jennifer arrived Tuesday and I arrived Wednesday and we had several appointments including a physical which Brianna passed with flying colors. Dr. Baker had even seen her in the hallway and commented on how great she looked!
That evening we went out to eat with our friends the Millers ( Scottie and Lori are the parents of Kole Miller). Brianna had a great time having fun with Kole and they even exchanged birthday gifts. It was a fun time to spend with them and Brianna had fun playing with Kole and it was a great evening! We had just heard about Kole's stable scan and we were so happy for Kole.
The next day Brianna had her labs drawn and went into sedation for the MRI around 9:45. I went back with her and she was quite happy and laughing! She was knocked out mid-sentence while talking to the nurses which was quite funny to see.
Jennifer and I were waiting for an eternity for the results and I finally got the results. It was not good news. Dr. Baker called and said that the primary (original tumor) had grown back to almost is orginal size when she was diagnosed back in October. Futhermore she had a few nodules that had formed on the ventricles and some brain tissue that they feel was the cause of her headaches. They originally felt that something else was the cause of her headaches because they didn't see any spread of the disease. That has obviously changed.
Needless to say Jennifer and I are speechless. This is not what we had expected at all. Some of the research I have done over the last couple months will have to be wrapped up over the next week or so and we will be trying to get an appointment with Chicago Children's Memorial Hospital to see what they can do closer to home.
Clinical trials open and close with great frequency. Sometimes there is nothing they can do when a child presents progression because trials open and close all the time. So we will continue the search to find the next treatment. In the meantime Brianna will have an in home nurse that will start coming to the house so she can start developing a relationship with an at home nurse.
Brianna is on a low dose of the steriod but that is to control any swelling and pain that she may be experiencing. She also has some meds to help with her pain if she has any more than the steriods can handle.
We will be exploring all options and we hope to have more answers after we meet with Chicago Children's Memorial hospital sometime this week.
Please keep Brianna and all the DIPG kids in your prayers including Caleb Spady and Andrew Smith and Max Lacewell. All three kids got similar news lately and we all pray for their situations to bring relief to their pain and find comfort.
Brianna is a great kid... one of the bravest I have ever seen. She has taught me alot from the first day she was born. She will continue to teach me.
Please visit three worthwile foundations to learn more about how you can help! ( www.justonemoreday.org) ( wwww.icouldbeyourchild.org) and ( www.thecurestartsnow.org) I know the organizers of all these organizations and I sit on the board of Just One More Day. All of these incredible people that run these foundations are dedicated and caring people that have been affected by this horrible disease. Please visit their websites to learn more about how you can help.
Also please continue to go to www.curebrianna.com to learn more about how you can help Brianna personally. This is going to be new territory for us and all the support and love you can give is much appreciated!
Thanks for checking in.... I know you all have been anxious to hear and thats is why I wanted to take time to do this update.
We can't thank you all enough....
We love you all.
With Hope,
Matt, Jennifer and Brianna
I am going to be brief with this update as much as I can....
Brianna and Jennifer arrived Tuesday and I arrived Wednesday and we had several appointments including a physical which Brianna passed with flying colors. Dr. Baker had even seen her in the hallway and commented on how great she looked!
That evening we went out to eat with our friends the Millers ( Scottie and Lori are the parents of Kole Miller). Brianna had a great time having fun with Kole and they even exchanged birthday gifts. It was a fun time to spend with them and Brianna had fun playing with Kole and it was a great evening! We had just heard about Kole's stable scan and we were so happy for Kole.
The next day Brianna had her labs drawn and went into sedation for the MRI around 9:45. I went back with her and she was quite happy and laughing! She was knocked out mid-sentence while talking to the nurses which was quite funny to see.
Jennifer and I were waiting for an eternity for the results and I finally got the results. It was not good news. Dr. Baker called and said that the primary (original tumor) had grown back to almost is orginal size when she was diagnosed back in October. Futhermore she had a few nodules that had formed on the ventricles and some brain tissue that they feel was the cause of her headaches. They originally felt that something else was the cause of her headaches because they didn't see any spread of the disease. That has obviously changed.
Needless to say Jennifer and I are speechless. This is not what we had expected at all. Some of the research I have done over the last couple months will have to be wrapped up over the next week or so and we will be trying to get an appointment with Chicago Children's Memorial Hospital to see what they can do closer to home.
Clinical trials open and close with great frequency. Sometimes there is nothing they can do when a child presents progression because trials open and close all the time. So we will continue the search to find the next treatment. In the meantime Brianna will have an in home nurse that will start coming to the house so she can start developing a relationship with an at home nurse.
Brianna is on a low dose of the steriod but that is to control any swelling and pain that she may be experiencing. She also has some meds to help with her pain if she has any more than the steriods can handle.
We will be exploring all options and we hope to have more answers after we meet with Chicago Children's Memorial hospital sometime this week.
Please keep Brianna and all the DIPG kids in your prayers including Caleb Spady and Andrew Smith and Max Lacewell. All three kids got similar news lately and we all pray for their situations to bring relief to their pain and find comfort.
Brianna is a great kid... one of the bravest I have ever seen. She has taught me alot from the first day she was born. She will continue to teach me.
Please visit three worthwile foundations to learn more about how you can help! ( www.justonemoreday.org) ( wwww.icouldbeyourchild.org) and ( www.thecurestartsnow.org) I know the organizers of all these organizations and I sit on the board of Just One More Day. All of these incredible people that run these foundations are dedicated and caring people that have been affected by this horrible disease. Please visit their websites to learn more about how you can help.
Also please continue to go to www.curebrianna.com to learn more about how you can help Brianna personally. This is going to be new territory for us and all the support and love you can give is much appreciated!
Thanks for checking in.... I know you all have been anxious to hear and thats is why I wanted to take time to do this update.
We can't thank you all enough....
We love you all.
With Hope,
Matt, Jennifer and Brianna
Another Great Weekend - April 5
Hi everybody,
This weekend Dad picked me up early on Friday so I could go over to my Aunt Jacke and Uncle Dave's house to spend time with them and my cousins Lauren and JJ! When he came back to get me I was in a really good mood cause we had a great time! Then we went to downtown to se Grandma and Grandpa Sharp and Aunt Faith at the John G. Shedd Aquarium. I loved every minute of it! We saw lots of exhibits! After that we went to Grandma and Grandpa's hotel and Kaitlyn and Gianna and me painted Aunt Faith's hair with hair mascara! It's supposed to wash out but Dad told me that Grandpa called him later and said Aunt Faith washed her hair but it didn't come out. Sorry Aunt Faith!!! We all went to eat at South Water Kitchen right next to the hotel and they fixed some organic food that I can have and I had a really good time. It was a great day and we'll remember it for a long time for sure! Today is Sunday and we got to color Easter eggs. We're going to Grandma and Grandpa Spinello's for a late birthday party cause me and Kaitlyn and Madison all had birthdays so we get to celebrate together! I felt good all weekend and that is great.
Love,
Bree
Note from Parent (Dad Matt):
Before I get into this weekend I do want to extend a big thank you to Seana Somolik,and everyone that came out to Palace Billards on a night that was predicted to get alot of snow but it didn't come until the next day! We raised a little over $3000 for The Brianna Sharp Medical Fund and everyone had a great time. Also a big thank you to Bill (owner of Palace Billards) and Detroit Danny who played some great music while everyone had a great time! Thanks to all for making it a success despite the weather.
This is good especially since we are heading into this week at St. Jude for follow up appointments including a 2 hour MRI Thursday morning! Please keep Brianna in your thoughts on Thursday and we are praying for good news.
Just a reminder that this week ( Monday thru Wednesday) is Jewel Shop n Share and the Shop n Share forms are posted on the GET INVOLVED part of the www.curebrianna.com website. 5% of all sales where people present the Shop N Share coupon at checkout will go to The Brianna Sharp Medical Fund.
Thanks to all for your birthday emails to Brianna! She went through them last night and recieved alot! And yes Aunt Michele that e-card was cute... she even saved to keep looking at over and over LOL
Please keep all the DIPG kids in your prayers, including Max, Kole, Caleb, Andrew, Alexis and all the other kids facing this battle on a daily basis. They need your thoughts and prayers every day.
Thanks for checking in and have a great day!
Matt (Brianna's Dad)
This weekend Dad picked me up early on Friday so I could go over to my Aunt Jacke and Uncle Dave's house to spend time with them and my cousins Lauren and JJ! When he came back to get me I was in a really good mood cause we had a great time! Then we went to downtown to se Grandma and Grandpa Sharp and Aunt Faith at the John G. Shedd Aquarium. I loved every minute of it! We saw lots of exhibits! After that we went to Grandma and Grandpa's hotel and Kaitlyn and Gianna and me painted Aunt Faith's hair with hair mascara! It's supposed to wash out but Dad told me that Grandpa called him later and said Aunt Faith washed her hair but it didn't come out. Sorry Aunt Faith!!! We all went to eat at South Water Kitchen right next to the hotel and they fixed some organic food that I can have and I had a really good time. It was a great day and we'll remember it for a long time for sure! Today is Sunday and we got to color Easter eggs. We're going to Grandma and Grandpa Spinello's for a late birthday party cause me and Kaitlyn and Madison all had birthdays so we get to celebrate together! I felt good all weekend and that is great.
Love,
Bree
Note from Parent (Dad Matt):
Before I get into this weekend I do want to extend a big thank you to Seana Somolik,and everyone that came out to Palace Billards on a night that was predicted to get alot of snow but it didn't come until the next day! We raised a little over $3000 for The Brianna Sharp Medical Fund and everyone had a great time. Also a big thank you to Bill (owner of Palace Billards) and Detroit Danny who played some great music while everyone had a great time! Thanks to all for making it a success despite the weather.
This is good especially since we are heading into this week at St. Jude for follow up appointments including a 2 hour MRI Thursday morning! Please keep Brianna in your thoughts on Thursday and we are praying for good news.
Just a reminder that this week ( Monday thru Wednesday) is Jewel Shop n Share and the Shop n Share forms are posted on the GET INVOLVED part of the www.curebrianna.com website. 5% of all sales where people present the Shop N Share coupon at checkout will go to The Brianna Sharp Medical Fund.
Thanks to all for your birthday emails to Brianna! She went through them last night and recieved alot! And yes Aunt Michele that e-card was cute... she even saved to keep looking at over and over LOL
Please keep all the DIPG kids in your prayers, including Max, Kole, Caleb, Andrew, Alexis and all the other kids facing this battle on a daily basis. They need your thoughts and prayers every day.
Thanks for checking in and have a great day!
Matt (Brianna's Dad)
Jewel Shop - April 2
From Brianna's Parents:
Reminder that the Jewel Shop & Share fundraiser is next week, (April 6, 7 & 8) We emailed the slips to as many people as possible, but if it did not reach you please visit www.curebrianna.com and click on "Get Involved" and go to the Jewel Shop & Share link. You should be able to print a copy of the slips. You must have the slip with you as the stores will not be able to donate without the documentation. Please, feel free to distribute to as many people as possible.
Jewel food stores will donate a portion of your grocery bill to the Brianna Sharp Medical Fund. We had great success Super Bowl week and hope that Easter/Spring break will prove to be just as successful.
Thank you for your continued support!! If you would like to contact us or if you have any questions, please see the information below.
Jennifer Siemann(Brianna's Mom) jensiemann@sbcglobal.net
Matthew Sharp (Brianna's Dad) msharp@broadvox.com
Reminder that the Jewel Shop & Share fundraiser is next week, (April 6, 7 & 8) We emailed the slips to as many people as possible, but if it did not reach you please visit www.curebrianna.com and click on "Get Involved" and go to the Jewel Shop & Share link. You should be able to print a copy of the slips. You must have the slip with you as the stores will not be able to donate without the documentation. Please, feel free to distribute to as many people as possible.
Jewel food stores will donate a portion of your grocery bill to the Brianna Sharp Medical Fund. We had great success Super Bowl week and hope that Easter/Spring break will prove to be just as successful.
Thank you for your continued support!! If you would like to contact us or if you have any questions, please see the information below.
Jennifer Siemann(Brianna's Mom) jensiemann@sbcglobal.net
Matthew Sharp (Brianna's Dad) msharp@broadvox.com
My 13th Birthday Tomorrow! - March 31
Exactly 13 years ago tomorrow I was born! Tomorrow is my birthday but I got to celebrate a week early! Mom treated me to a salon day and Kaitlyn and Haley came with us. Karin and Megan at the spa treated Mom and Kaitlyn and Haley too. It was fun! After the spa we went to Gino's East pizza and my friends from school and all Mom's family were there! For a minute I didn't get what was happening and then all of a sudden I realized it was a surprise party!!! I couldn't even talk! Gino made my special pizza and Mom made a chocolate cake that was on my special diet and I even got to have Steaz soda so I didn't miss out on anything! I got to get my hair done and makeup and some cool new shades. Mom said I looked like I was 16. COOL! If you want to send me a message, I have my own email address too. It is bls.2009@att.net. It would be fun to get messages from all the people who are praying for me to get well.
Thanks to everybody.
Love,
Bree
Note from Parents (Mom Jennifer):
Exactly 13 years ago I called the OB doctor and he told me to go to the hospital to get checked (it was a Sunday night) I left for the hospital thinking they would send me right back home...I wasn't due for another month (April 28th). I was shocked when the nurse said, "Well, you won't be leaving here without a baby!" I thought she was nuts!!! I could not believe we spent the entire day shopping for a cell phone so I could call Matt when I was in labor!!!Brianna was born on April 1st (April Fool's Day) and since she couldn't wait another 4 weeks and the fact that it was April Fool's Day, no one believed that I was at the hospital, in labor...including the store manager at Menards (I was in charge of payroll) because I called in sick saying I was in labor and someone needed to send payroll to the general office. I think he finally realized it wasn't a joke mid-afternoon and they decided to scramble to get someone to finish payroll.I remember calling family and friends telling them, "I'm at the hospital in labor...and this is no joke!!" While I was at the hospital my entire family had to scramble to finish the nursery which had the carpeting ripped out and still needed to be painted. By the time we came home all was ready including the new crib and dresser. The entire labor, delivery, etc. was complete chaos but well worth the wait. Born 1 month early, Brianna Leigh still weighed in at 7 pounds, 3 ounces. Thank goodness she didn't wait!! We will post the pictures from her birthday soon so don't forget to check the photo gallery next time.Thank you for all of your continued prayers and support. Thank you to everyone that helped with the party (Bob, Jackie, Grandma, Aunt Pat, Great Grandma, Karin, Megan, Leanne, etc.) I am sorry if I left someone out...please know we are so grateful for all that you do to support us daily! Goc Bless!If you would like to wish Brianna happy birthday, her email address is bls.2009@att.net. She doesn't receive many emails so she will be shocked when she sees the number of emails in her "inbox"
Love to all,
Brianna's Family
Thanks to everybody.
Love,
Bree
Note from Parents (Mom Jennifer):
Exactly 13 years ago I called the OB doctor and he told me to go to the hospital to get checked (it was a Sunday night) I left for the hospital thinking they would send me right back home...I wasn't due for another month (April 28th). I was shocked when the nurse said, "Well, you won't be leaving here without a baby!" I thought she was nuts!!! I could not believe we spent the entire day shopping for a cell phone so I could call Matt when I was in labor!!!Brianna was born on April 1st (April Fool's Day) and since she couldn't wait another 4 weeks and the fact that it was April Fool's Day, no one believed that I was at the hospital, in labor...including the store manager at Menards (I was in charge of payroll) because I called in sick saying I was in labor and someone needed to send payroll to the general office. I think he finally realized it wasn't a joke mid-afternoon and they decided to scramble to get someone to finish payroll.I remember calling family and friends telling them, "I'm at the hospital in labor...and this is no joke!!" While I was at the hospital my entire family had to scramble to finish the nursery which had the carpeting ripped out and still needed to be painted. By the time we came home all was ready including the new crib and dresser. The entire labor, delivery, etc. was complete chaos but well worth the wait. Born 1 month early, Brianna Leigh still weighed in at 7 pounds, 3 ounces. Thank goodness she didn't wait!! We will post the pictures from her birthday soon so don't forget to check the photo gallery next time.Thank you for all of your continued prayers and support. Thank you to everyone that helped with the party (Bob, Jackie, Grandma, Aunt Pat, Great Grandma, Karin, Megan, Leanne, etc.) I am sorry if I left someone out...please know we are so grateful for all that you do to support us daily! Goc Bless!If you would like to wish Brianna happy birthday, her email address is bls.2009@att.net. She doesn't receive many emails so she will be shocked when she sees the number of emails in her "inbox"
Love to all,
Brianna's Family
Reminder of Tonight's Fundraiser - March 28
Note from Brianna's Dad, Matt
I just wanted to remind those of you in the Chicago area of the fundraiser that is being held tonight at 6:00 for Brianna in Villa Park.
Here are all the details!
Start Time: Saturday, March 28, 2009 at 6:00pm
End Time: Sunday, March 29, 2009 at 12:00am
Location: Palace Sports Bar and BilliardsStreet: 160 West Roosevelt Road
City/Town: Villa Park, IL
Come on out to Palace Billiards and help out Brianna Sharp who has been diagnosed with a Pediatric Brain Tumor. There will be a silent auction and raffles. A $35 ticket includes a dinner from 7-8 pm, free pool all night (starting at 6pm), two drink tickets and Live Music with Detroit Danny! All proceeds from ticket, auction and raffles will go to the Brianna Sharp Medical Fund to help pay for medications, nutritional supplements and medical bills!
We are excited to see many of you that will be coming out tonight to support Brianna in her fight against DIPG.
Thanks to all for your love and support!
Gratefully,
Matt (Brianna's Dad)
I just wanted to remind those of you in the Chicago area of the fundraiser that is being held tonight at 6:00 for Brianna in Villa Park.
Here are all the details!
Start Time: Saturday, March 28, 2009 at 6:00pm
End Time: Sunday, March 29, 2009 at 12:00am
Location: Palace Sports Bar and BilliardsStreet: 160 West Roosevelt Road
City/Town: Villa Park, IL
Come on out to Palace Billiards and help out Brianna Sharp who has been diagnosed with a Pediatric Brain Tumor. There will be a silent auction and raffles. A $35 ticket includes a dinner from 7-8 pm, free pool all night (starting at 6pm), two drink tickets and Live Music with Detroit Danny! All proceeds from ticket, auction and raffles will go to the Brianna Sharp Medical Fund to help pay for medications, nutritional supplements and medical bills!
We are excited to see many of you that will be coming out tonight to support Brianna in her fight against DIPG.
Thanks to all for your love and support!
Gratefully,
Matt (Brianna's Dad)
Promoting Our Greater Cause - March 27
This blog is from my parents. It's got a lot of medical stuff in it and you all know I don't like to talk about it much. I just want to get well. So today is mostly for parents.
Love, Bree
From Brianna's Parents:
The websites and Youtube clip inclkuded in this update may not be for everyone. The websites include links to DIPG warriors' websites, as well as other ways you can help promote our cause. The sites and the Good Morning America clip also honor DIPG angels.
We previously asked everyone for help in assisting us by contacting your U.S. Representatives and Senators in order to push for current legislation that would help pediatric brain tumor patients. Though there are many different types of pediatric brain tumors, Brianna and all of the DIPG warriors have a tough road because their tumor accounts for only about 5%-10% of all pediatric brain tumors. (150-200 children are diagnosed annually in the U.S.)
The percent of money spent on pediatric cancer research is lacking in comparison to other types of cancer. With DIPG, we have an extremely small community and we can only get our voices heard if we can count on people like you helping us in our efforts to promote awareness. Whether it is for pediatric cancer in general, more specifically pediatric brain tumors, or even more specifically Diffuse Intrinsic Pontine Glioma, the families and friends directly related to the brave DIPG warriors would be forever grateful for your support and contributions to promote awareness and research that will hopefully lead to a cure.
We have many friends fighting the same battle as Brianna and we include them on our updates and pray for them daily as the DIPG parents have developed a support system and at the same time are working on promoting our cause.
For Brianna, Max, Kole, Liam, Caleb, Carter, Derrick, Keleigh, Skylar, and many more warriors we thank you for your continued support and prayers!
We are including those organization website addresses and hope that you will visit to learn more about how you can help. We also included a video clip from Good Morning America, which tells a story about a little girl who made a difference and her parents are working hard to promote awareness for pediatric cancer.
You will have to cut and paste into your browser in order to view!!
www.justonemoreday.org
www.icouldbeyourchild.org
www.thecurestartsnow.org/gma (Good Morning America clip)
God Bless You! Thank you to everyone who prays for and holds a special place in their heart for our DIPG warriors and angels!!!
Brianna's Family
Love, Bree
From Brianna's Parents:
The websites and Youtube clip inclkuded in this update may not be for everyone. The websites include links to DIPG warriors' websites, as well as other ways you can help promote our cause. The sites and the Good Morning America clip also honor DIPG angels.
We previously asked everyone for help in assisting us by contacting your U.S. Representatives and Senators in order to push for current legislation that would help pediatric brain tumor patients. Though there are many different types of pediatric brain tumors, Brianna and all of the DIPG warriors have a tough road because their tumor accounts for only about 5%-10% of all pediatric brain tumors. (150-200 children are diagnosed annually in the U.S.)
The percent of money spent on pediatric cancer research is lacking in comparison to other types of cancer. With DIPG, we have an extremely small community and we can only get our voices heard if we can count on people like you helping us in our efforts to promote awareness. Whether it is for pediatric cancer in general, more specifically pediatric brain tumors, or even more specifically Diffuse Intrinsic Pontine Glioma, the families and friends directly related to the brave DIPG warriors would be forever grateful for your support and contributions to promote awareness and research that will hopefully lead to a cure.
We have many friends fighting the same battle as Brianna and we include them on our updates and pray for them daily as the DIPG parents have developed a support system and at the same time are working on promoting our cause.
For Brianna, Max, Kole, Liam, Caleb, Carter, Derrick, Keleigh, Skylar, and many more warriors we thank you for your continued support and prayers!
We are including those organization website addresses and hope that you will visit to learn more about how you can help. We also included a video clip from Good Morning America, which tells a story about a little girl who made a difference and her parents are working hard to promote awareness for pediatric cancer.
You will have to cut and paste into your browser in order to view!!
www.justonemoreday.org
www.icouldbeyourchild.org
www.thecurestartsnow.org/gma (Good Morning America clip)
God Bless You! Thank you to everyone who prays for and holds a special place in their heart for our DIPG warriors and angels!!!
Brianna's Family
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