Hi -
We had a lot of fun this weekend. We went to Peoria on Saturday night to watch Kaitlyn's volleyball tournament. I felt pretty good and talked all the way there! Finally when we got to the hotel Mom said a whole bunch of times Seriously, we need to get to sleep because we have to get up early! I couldn't help it tho cause we were having fun talking and mom looked so happy!
Kaitlyn and I decided we wanted to go to the Memorial Day parade and we got to see Gregory's marching band. It was FANTASTIC and I'm so glad I used to be part of that band when I played flute!
I've been feeling pretty good but I'm getting clumsy and I lose my balance sometimes. Mom is already filling out the papers for me for 8th grade and Kaitlyn and I have already been talking about getting to ride the bus together again. It's been 2 years since we did that and it was fun!
Ok now it's Mom's turn. She wants to send everybody an Irish proverb that she likes.
Love,
Bree
Note from Jennifer:
Shining Through The Tears
It's easy to be pleasant when life flows by like a song.
But the man worthwhile is the one who can smile
When everything goes dead wrong.
For the test of the heart is trouble and it always comes with years.
And the smile that is worth the praises of earth
Is the smile that shines through the tears.
Love and thanks from Brianna's family
Wednesday, May 27, 2009
Detention and Memorial Day weekend - May 22
Hi everybody,
We have been real busy this week even though I have been so tired from the radiation. On Tuesday morning I fell down and hit my head and it was pretty scary. Wednesday was good though. It's been kinda weird because a reporter from WCIU in Chicago wanted to interview me and I feel funny about when people want to take my picture. There is a lot to tell and Mom does it better than me so she's gonna write all about it.
Love and thank you to everybody for all your support!
Bree
From Mom Jennifer:
(This is a longer update, but I wanted to include some very important events and a special thank you to Brianna’s relatives who we will honor this holiday weekend!) Thank you very much for following this journey and for your unending love & support!!
BRIANNA'S STORY?---A reporter from WCIU Chicago learned about Brianna after reading the November newspaper article in the Naperville Sun. He was following her story online and contacted us about two months ago to see if we might be interested in sharing her story. May is brain tumor awareness month and he was inspired by Brianna’s positive attitude in dealing with such a difficult illness and it is our hope that her story will touch hearts and build DIPG awareness. The reporter is sensitive to our needs and requests and is not overly intrusive. He is showing great patience as Brianna is the most camera-shy person in the world!! Trying to capture her true personality is quite a challenge. We hope that we have been able to capture some glimpses of the “true Brianna” in order to show the world how incredible she is…we want people to see Brianna the way we do! Kyle spent most of Wednesday trying to capture special moments to give people a true picture of what Brianna is going through and how she handles herself.
DR. VISIT---I took Brianna to her doctor appointment Wednesday (Dr. Ellison-primary) and Kyle was there to capture the check-up and the patient/doctor relationship. He was planning on following us for the day and the doctor visit was the first outing of the day. Of course, Brianna was very quiet and shy and it was difficult to capture the wonderful rapport between her and Dr. Ellison which is one of mutual love, respect, caring, and understanding. Brianna presented Dr. Ellison with a gift (a special picture frame she made for Dr. Ellison with a picture of the two of them together) so hopefully that act will show her true personality.
BRIANNA VISITS SCHOOL FRIENDS---Following the doctor visit, we went to Brianna’s school to surprise her friends and say hello to everyone after a long absence. Brianna has TONS of close friends and I am amazed at what a wonderful group of girls she has chosen to associate with…absolutely the most caring, talented, supportive, loving group of friends! It is not an exaggeration when I say that her list of “very close friends” is at least 15-20 girls. Ms. Beauregard and (not all…but a lot) of Brianna’s friends were waiting for the surprise and it turned out to be a wonderful visit. They each helped color/label golf balls for us to use later that evening. When I looked around the room at these incredible girls I had to ask (already knowing the answer), “Have any of you ever received a detention?” Of course, the answer was no, because just like Brianna, these girls are too sweet to ever get into trouble. So, Ms. Beauregard decided Brianna should receive her first detention for vandalizing golf balls!! I signed the detention slip, but I did not take Brianna to serve the detention the next morning. :o)
SMACKING GOLF BALLS---Bob, Eric, Haley, Kaitlyn and I decided to drive some cancer golf balls into the woods behind our house after dinner Wednesday night. Kyle was still following us, but Brianna was pooped out and needed a nap. Kyle filmed us swinging the clubs, but some need more practice than others. We realized what great therapy this is and we plan on continuing to collect donated golf balls, decorating them, and making it to a driving range to continue to smack cancer and “stupid DIPG tumors.”
HOLIDAY WEEKEND---Brianna and I will travel to Peoria Saturday night in order to watch Kaitlyn in her volleyball tournament. Matt headed to Peoria this evening with Kaitlyn so she can play Saturday afternoon. I hope Brianna feels up to the trip as we know our plans have potential to change last minute depending on how Brianna is feeling. We hope to finish out the volleyball season with Brianna cheering on Kaitlyn! We wish Kaitlyn and her team the best of luck in the two-day tourney!!
GOD BLESS---All of our military veterans and current soldiers this holiday weekend! Especially, Brianna’s Grandpa Rick Sharp (U.S. Army-Retired), Grandpa Jack Close (U.S. Coast Guard-retired, deceased), Uncle Jeff Close (U.S. Navy-Retired), Uncle Josh Moser (U.S. Army-Active, two tours Iraq), Great-Grandpa Richard Sharp (U.S. Army-retired, deceased), Great-Grandpa James Skinner (U.S. Army-retired), & Great-Uncle Steve Sharp (U.S. Army Reserves-Afghanistan), Great-Grandpa Harold Cochran (U.S. Army-retired, deceased), Great-Uncle Robert Cochran (U.S. Army-retired).
From Brianna's Family
We have been real busy this week even though I have been so tired from the radiation. On Tuesday morning I fell down and hit my head and it was pretty scary. Wednesday was good though. It's been kinda weird because a reporter from WCIU in Chicago wanted to interview me and I feel funny about when people want to take my picture. There is a lot to tell and Mom does it better than me so she's gonna write all about it.
Love and thank you to everybody for all your support!
Bree
From Mom Jennifer:
(This is a longer update, but I wanted to include some very important events and a special thank you to Brianna’s relatives who we will honor this holiday weekend!) Thank you very much for following this journey and for your unending love & support!!
BRIANNA'S STORY?---A reporter from WCIU Chicago learned about Brianna after reading the November newspaper article in the Naperville Sun. He was following her story online and contacted us about two months ago to see if we might be interested in sharing her story. May is brain tumor awareness month and he was inspired by Brianna’s positive attitude in dealing with such a difficult illness and it is our hope that her story will touch hearts and build DIPG awareness. The reporter is sensitive to our needs and requests and is not overly intrusive. He is showing great patience as Brianna is the most camera-shy person in the world!! Trying to capture her true personality is quite a challenge. We hope that we have been able to capture some glimpses of the “true Brianna” in order to show the world how incredible she is…we want people to see Brianna the way we do! Kyle spent most of Wednesday trying to capture special moments to give people a true picture of what Brianna is going through and how she handles herself.
DR. VISIT---I took Brianna to her doctor appointment Wednesday (Dr. Ellison-primary) and Kyle was there to capture the check-up and the patient/doctor relationship. He was planning on following us for the day and the doctor visit was the first outing of the day. Of course, Brianna was very quiet and shy and it was difficult to capture the wonderful rapport between her and Dr. Ellison which is one of mutual love, respect, caring, and understanding. Brianna presented Dr. Ellison with a gift (a special picture frame she made for Dr. Ellison with a picture of the two of them together) so hopefully that act will show her true personality.
BRIANNA VISITS SCHOOL FRIENDS---Following the doctor visit, we went to Brianna’s school to surprise her friends and say hello to everyone after a long absence. Brianna has TONS of close friends and I am amazed at what a wonderful group of girls she has chosen to associate with…absolutely the most caring, talented, supportive, loving group of friends! It is not an exaggeration when I say that her list of “very close friends” is at least 15-20 girls. Ms. Beauregard and (not all…but a lot) of Brianna’s friends were waiting for the surprise and it turned out to be a wonderful visit. They each helped color/label golf balls for us to use later that evening. When I looked around the room at these incredible girls I had to ask (already knowing the answer), “Have any of you ever received a detention?” Of course, the answer was no, because just like Brianna, these girls are too sweet to ever get into trouble. So, Ms. Beauregard decided Brianna should receive her first detention for vandalizing golf balls!! I signed the detention slip, but I did not take Brianna to serve the detention the next morning. :o)
SMACKING GOLF BALLS---Bob, Eric, Haley, Kaitlyn and I decided to drive some cancer golf balls into the woods behind our house after dinner Wednesday night. Kyle was still following us, but Brianna was pooped out and needed a nap. Kyle filmed us swinging the clubs, but some need more practice than others. We realized what great therapy this is and we plan on continuing to collect donated golf balls, decorating them, and making it to a driving range to continue to smack cancer and “stupid DIPG tumors.”
HOLIDAY WEEKEND---Brianna and I will travel to Peoria Saturday night in order to watch Kaitlyn in her volleyball tournament. Matt headed to Peoria this evening with Kaitlyn so she can play Saturday afternoon. I hope Brianna feels up to the trip as we know our plans have potential to change last minute depending on how Brianna is feeling. We hope to finish out the volleyball season with Brianna cheering on Kaitlyn! We wish Kaitlyn and her team the best of luck in the two-day tourney!!
GOD BLESS---All of our military veterans and current soldiers this holiday weekend! Especially, Brianna’s Grandpa Rick Sharp (U.S. Army-Retired), Grandpa Jack Close (U.S. Coast Guard-retired, deceased), Uncle Jeff Close (U.S. Navy-Retired), Uncle Josh Moser (U.S. Army-Active, two tours Iraq), Great-Grandpa Richard Sharp (U.S. Army-retired, deceased), Great-Grandpa James Skinner (U.S. Army-retired), & Great-Uncle Steve Sharp (U.S. Army Reserves-Afghanistan), Great-Grandpa Harold Cochran (U.S. Army-retired, deceased), Great-Uncle Robert Cochran (U.S. Army-retired).
From Brianna's Family
Can't Thank People Enough - May 19
Brianna is too tired to post on the blog today, so her dad Matt is going to bring you up to date.
Notes from Matt:
It's been a while since I have posted an update and Jennifer has done a great job keeping everyone informed of what Brianna is up to. This morning she was at Edward Hospital ER because she had a fall and hit her head and was experiencing alot of pain early this morning. I am happy to report that Brianna was discharged this morning after having a CT scan of the head and spine done and nothing alarming was seen by the doctor or the radiologist. Just the same we will be taking the scans with us to Children's Memorial when we go next for those folks to look at the scans as well. I couldn't agree more with Jen that parents need to take the reins sometimes in these situations because it is the parents that know the child best.
This past weekend was a nice one as we had dinner on Friday with her Grandma Pat and Aunt Kate and Great Grandma Cochran at Boston Blackies. It was nice for her to be able to visit with her Great Grandma as she lives downstate and doesn't get to visit as often.
Saturday was a pretty relaxing day for her as she just doodled and colored with her youngest sister Gianna. She went home Saturday night back to Jen's to go support some runners that were going to run in her honor but she didn't feel well enough to go.
Sunday afternoon there was the final blue hair extension fundraiser in Algonquin. It was a great succcess as Uncle John and Aunt Ania organized with others in the Algonquin community! Special thanks to Susie McDonnell for opening up her heart and home to make it all possible and Jane Morales and Mary Vogt for all of their support and help. Also Andi Butler for posting announcements on the Eastview PTO site. Denec Cardelli and Beckey Metzger donated some items to be raffled off. And like to thank the "People of Algonquin"... its truly been amazing to see the love and support of all different communities come together to support our daughter and the fight that she battles every day.
There have been countless people that have been supporting and giving their love and prayers each and every day. We can't thank you enough.
Just as a reminder to those that live near a Jewel Food Store and might be doing some shopping for the upcoming Memorial Day holiday... don't forget to go to the www.curebrianna.com website to download the form for the Jewel Shop n Share fundraiser for Brianna. That will be happening today and tomorrow so go to the website and download the form and Happy Shopping!
Also check out the Relay for Life fundraiser for the American Cancer Society where Brianna's Brigade will be participating! (Again see the www.curebrianna.com website for that link ) Join in and participate by either running or walking with us and/or donating (and no you don't have run the entire evening!! ha ha)
Brianna has some busy days over the next couple days so Jennifer will be doing the next update after she is done with her activites on those days.
Thanks to all for your support and checking in on Brianna!
Matt, Jennifer, Brianna and the rest of the "gang"
Notes from Matt:
It's been a while since I have posted an update and Jennifer has done a great job keeping everyone informed of what Brianna is up to. This morning she was at Edward Hospital ER because she had a fall and hit her head and was experiencing alot of pain early this morning. I am happy to report that Brianna was discharged this morning after having a CT scan of the head and spine done and nothing alarming was seen by the doctor or the radiologist. Just the same we will be taking the scans with us to Children's Memorial when we go next for those folks to look at the scans as well. I couldn't agree more with Jen that parents need to take the reins sometimes in these situations because it is the parents that know the child best.
This past weekend was a nice one as we had dinner on Friday with her Grandma Pat and Aunt Kate and Great Grandma Cochran at Boston Blackies. It was nice for her to be able to visit with her Great Grandma as she lives downstate and doesn't get to visit as often.
Saturday was a pretty relaxing day for her as she just doodled and colored with her youngest sister Gianna. She went home Saturday night back to Jen's to go support some runners that were going to run in her honor but she didn't feel well enough to go.
Sunday afternoon there was the final blue hair extension fundraiser in Algonquin. It was a great succcess as Uncle John and Aunt Ania organized with others in the Algonquin community! Special thanks to Susie McDonnell for opening up her heart and home to make it all possible and Jane Morales and Mary Vogt for all of their support and help. Also Andi Butler for posting announcements on the Eastview PTO site. Denec Cardelli and Beckey Metzger donated some items to be raffled off. And like to thank the "People of Algonquin"... its truly been amazing to see the love and support of all different communities come together to support our daughter and the fight that she battles every day.
There have been countless people that have been supporting and giving their love and prayers each and every day. We can't thank you enough.
Just as a reminder to those that live near a Jewel Food Store and might be doing some shopping for the upcoming Memorial Day holiday... don't forget to go to the www.curebrianna.com website to download the form for the Jewel Shop n Share fundraiser for Brianna. That will be happening today and tomorrow so go to the website and download the form and Happy Shopping!
Also check out the Relay for Life fundraiser for the American Cancer Society where Brianna's Brigade will be participating! (Again see the www.curebrianna.com website for that link ) Join in and participate by either running or walking with us and/or donating (and no you don't have run the entire evening!! ha ha)
Brianna has some busy days over the next couple days so Jennifer will be doing the next update after she is done with her activites on those days.
Thanks to all for your support and checking in on Brianna!
Matt, Jennifer, Brianna and the rest of the "gang"
Friday, May 15, 2009
Drive the STUPID TUMOR to Outer Space! - May 15
Hi Everybody -
I finished the first week of radiation and I am really tired. Mostly now I sleep because it really makes me feel lazy and tired all the time. It also makes my throat burn and the steroid stuff makes me hungry so I am always starving! The only thing that feels good to eat is stuff like pudding and ice cream and milk. Then they started giving me medicine to make the burning stop and IT BURNED TOO! So now they changed it and its a little better. I really wish I felt better right now. I am so tired of being SICK! Mom came up with an idea that made me laugh so I hope everybody will join in. Everybody can send my mom golf balls and I'm going to color them like tumors with faces and stuff. Then my stepdad and mom are going to go to the driving range and hit the golf balls as far as they can! That will be so cool! Maybe the real tumor will get the hint!!!
Another goodo thing is that Command Scott Altman sent me an autographed picture and letter and one of his patches and when he goes up in the space shuttle he's going to say a prayer for me. Well that's all I can write for now. Thank you for reading this and send in some golf balls so my parents can whack them!
Love,
Bree
Notes from Mom:
“STUPID TUMOR”---Lately, Brianna has been struggling with all that is going on…she is becoming impatient and wants to feel better-NOW!! I mentioned in the last update her drawing of the “stupid tumor” so I came up with an idea and if you would like to help out, please feel free!! We are going to collect as many golf balls as possible and Brianna is going to color them with faces, labels, etc. Bob and I (David and Leanne-you are more than welcome to join us) will go to a driving range and smack the tumor/cancer golf balls. Brianna should get a kick out of watching the spectacle! I presented the idea to her and she laughed. I am sure she will laugh even harder watching me try to swing a club after taking at least a 3 year sabbatical! Feel free to donate golf balls or even send us your own “stupid cancer” golf balls labeled with anything you want us to cream (to our home address) I can’t guarantee that my drives will amount to much, but Bob will definitely break a record with the added incentive of smacking the tumor/cancer golf balls.
SPACE SHUTTLE---Many of you are probably aware of the space shuttle launch this week. Well, Commander Scott Altman knows Brianna and is saying some prayers while on the mission. He sent Brianna an autograph picture, letter, and one of his patches and had is specially framed. Please pray for Scott and the crew so that they have a safe return home. We hope to be able to meet him someday soon! We are including a link to an article about the mission.
http://news.yahoo.com/s/space/astronautsspotsmalldingsonshuttleheatshield
RELAY FOR LIFE---We have put together a Relay for Life team (Brianna’s Brigade) supporting the American Cancer Society. The event is to be held on June 5th at Neuqua Valley High School in Naperville, IL. Max Lacewell also has a team (Little Dude’s DIPG Warriors). Little Dude’s team is currently leading in the fundraising efforts and our goal is to have both teams finish in the top two! If we can do this, we will bring awareness to a very rare form of pediatric cancer. We are including a link to our team page in case you are interested in joining our team or making a donation to Brianna’s Relay team. Our goal is to raise at least $5,000 and after just a few days we are already 25% on our way. Of course, we want to far exceed that amount and hope we can count on your support! Feel free to send the link to any/all people you know as this event it to support the American Cancer Society and to further research to find a cure for ALL types of cancer.
http://main.acsevents.org/goto/briannasbrigade
THANK YOU’S---Finally, we want to thank everyone for their prayers and words of encouragement. We are blessed with a huge support network and our family has played a very important role. I wish we could thank every individual for everything they do, but the outpouring of love is overwhelming and it is so difficult to list them all. However, a few people need special thanks for their support over the last several weeks. Thank you to Grandma Close and Grandma Siemann for helping take care of Brianna and all of our needs. Whether it is running errands, coming to visit, or sitting with Brianna or Kaitlyn, we greatly appreciate your help. Aunt Jackie and Aunt Georgia have been very supportive as they keep in touch asking how things are going and also visiting Brianna or treating her to an outing so she can get out of the house and enjoy herself. Bob has been a great comfort to Brianna when she struggles emotionally, not to mention a huge help with daily activities, appointments and as emotional support for me. Leanne, thank you for your 7 gifts in 7 days gesture for Brianna, you are amazing! Finally, thank you to the McCoy and Schmidt families for their kindness and generosity…we are incredibly grateful!
GOD BLESS!!
Brianna's Parents
I finished the first week of radiation and I am really tired. Mostly now I sleep because it really makes me feel lazy and tired all the time. It also makes my throat burn and the steroid stuff makes me hungry so I am always starving! The only thing that feels good to eat is stuff like pudding and ice cream and milk. Then they started giving me medicine to make the burning stop and IT BURNED TOO! So now they changed it and its a little better. I really wish I felt better right now. I am so tired of being SICK! Mom came up with an idea that made me laugh so I hope everybody will join in. Everybody can send my mom golf balls and I'm going to color them like tumors with faces and stuff. Then my stepdad and mom are going to go to the driving range and hit the golf balls as far as they can! That will be so cool! Maybe the real tumor will get the hint!!!
Another goodo thing is that Command Scott Altman sent me an autographed picture and letter and one of his patches and when he goes up in the space shuttle he's going to say a prayer for me. Well that's all I can write for now. Thank you for reading this and send in some golf balls so my parents can whack them!
Love,
Bree
Notes from Mom:
“STUPID TUMOR”---Lately, Brianna has been struggling with all that is going on…she is becoming impatient and wants to feel better-NOW!! I mentioned in the last update her drawing of the “stupid tumor” so I came up with an idea and if you would like to help out, please feel free!! We are going to collect as many golf balls as possible and Brianna is going to color them with faces, labels, etc. Bob and I (David and Leanne-you are more than welcome to join us) will go to a driving range and smack the tumor/cancer golf balls. Brianna should get a kick out of watching the spectacle! I presented the idea to her and she laughed. I am sure she will laugh even harder watching me try to swing a club after taking at least a 3 year sabbatical! Feel free to donate golf balls or even send us your own “stupid cancer” golf balls labeled with anything you want us to cream (to our home address) I can’t guarantee that my drives will amount to much, but Bob will definitely break a record with the added incentive of smacking the tumor/cancer golf balls.
SPACE SHUTTLE---Many of you are probably aware of the space shuttle launch this week. Well, Commander Scott Altman knows Brianna and is saying some prayers while on the mission. He sent Brianna an autograph picture, letter, and one of his patches and had is specially framed. Please pray for Scott and the crew so that they have a safe return home. We hope to be able to meet him someday soon! We are including a link to an article about the mission.
http://news.yahoo.com/s/space/astronautsspotsmalldingsonshuttleheatshield
RELAY FOR LIFE---We have put together a Relay for Life team (Brianna’s Brigade) supporting the American Cancer Society. The event is to be held on June 5th at Neuqua Valley High School in Naperville, IL. Max Lacewell also has a team (Little Dude’s DIPG Warriors). Little Dude’s team is currently leading in the fundraising efforts and our goal is to have both teams finish in the top two! If we can do this, we will bring awareness to a very rare form of pediatric cancer. We are including a link to our team page in case you are interested in joining our team or making a donation to Brianna’s Relay team. Our goal is to raise at least $5,000 and after just a few days we are already 25% on our way. Of course, we want to far exceed that amount and hope we can count on your support! Feel free to send the link to any/all people you know as this event it to support the American Cancer Society and to further research to find a cure for ALL types of cancer.
http://main.acsevents.org/goto/briannasbrigade
THANK YOU’S---Finally, we want to thank everyone for their prayers and words of encouragement. We are blessed with a huge support network and our family has played a very important role. I wish we could thank every individual for everything they do, but the outpouring of love is overwhelming and it is so difficult to list them all. However, a few people need special thanks for their support over the last several weeks. Thank you to Grandma Close and Grandma Siemann for helping take care of Brianna and all of our needs. Whether it is running errands, coming to visit, or sitting with Brianna or Kaitlyn, we greatly appreciate your help. Aunt Jackie and Aunt Georgia have been very supportive as they keep in touch asking how things are going and also visiting Brianna or treating her to an outing so she can get out of the house and enjoy herself. Bob has been a great comfort to Brianna when she struggles emotionally, not to mention a huge help with daily activities, appointments and as emotional support for me. Leanne, thank you for your 7 gifts in 7 days gesture for Brianna, you are amazing! Finally, thank you to the McCoy and Schmidt families for their kindness and generosity…we are incredibly grateful!
GOD BLESS!!
Brianna's Parents
Monday, May 11, 2009
New Pictures - Monday, May 11
Hi everybody
Mom just put some more pictures up. Yesterday was a lot of fun. I felt pretty good so we got to go out for breakfast like we do every year. We didn't go to a buffet cause a lot of people have the flue so we went to Hugos Frog Bar instead. Then we went to the Naperville Riverwalk to take pictures.After that we went to Haley's volleball game and Home Depot and Target. I got to ride in the wheelchair cause I get so tired but I still get to go places with my family so thats cool. Sometimes Mom and my step-dad want me to get a little bit more excercise so I don't get too weak but they don't make me walk all the time.
After we got home I rested and colored in my notebook and Mom and Kaitlyn planted flowers. This week I start radiation and Mom told me it might make me swell but the good part is that after it starts working maybe they can let me stop taking the steroids that make me get really puffy and maybe my back won't hurt so much.
I hope everybody had a great Mother's Day and loved thier mom as much as I love my mom.
I think every day should be like Mother's day.
Love,
Bree
Mom just put some more pictures up. Yesterday was a lot of fun. I felt pretty good so we got to go out for breakfast like we do every year. We didn't go to a buffet cause a lot of people have the flue so we went to Hugos Frog Bar instead. Then we went to the Naperville Riverwalk to take pictures.After that we went to Haley's volleball game and Home Depot and Target. I got to ride in the wheelchair cause I get so tired but I still get to go places with my family so thats cool. Sometimes Mom and my step-dad want me to get a little bit more excercise so I don't get too weak but they don't make me walk all the time.
After we got home I rested and colored in my notebook and Mom and Kaitlyn planted flowers. This week I start radiation and Mom told me it might make me swell but the good part is that after it starts working maybe they can let me stop taking the steroids that make me get really puffy and maybe my back won't hurt so much.
I hope everybody had a great Mother's Day and loved thier mom as much as I love my mom.
I think every day should be like Mother's day.
Love,
Bree
Mother's Day weekend - Friday, May 7
Hi Everybody,
I started getting radiation treatments on Wednesday. We went to the Dupage Onclogy Center and they did a scan and radiation. I have to go there 30 times. It's hard to get up so early cause they do it at 7 oclock in the morning, but I can sleep in the car on the way there and on the way home. The radiation only lasts 15 minutes and we get home at 8 and I get to go back to bed. YAY! Every week I have to go to Childrens Memorial hospital for stuff and every week a nurse comes to our house to see me. Then the social worker comes and a music therapist but the good part is I only have school at home 1-5 hours. Also a psychologist comes and a doctor and if anything else happens there will be other stuff. I get tired all the time and its from the radiation. Sometimes I lose my balance and my waist and legs and feet get numb. Today Mom had to help me buckle my seatbelt because my fingers were numb. It's weird. Now I get to ride in a wheelchair if I'm really tired so I can go shopping or go for a walk without getting to tired. I'm supposed to get exercise too so I don't get to use it all the time.
A lot of the time I like to doodle and draw and write and color. I love gel pens and I drew a picture of the stupid tumor. I put beams of radiation on it and chemo and hope and faith. After everything attacked it I drew it all little and crying and I was laughing and saying Ha Ha You Shrunk! Then I wrote down all the stuff since they found the tumor that is wrong with me. Here is my list.
headaches, nausea, sore knees and ankles, backaches, throat and espohagus trouble, strep throat, ingrown toenails, dry skin, itching, back and shoulder pain, knee weakness, ankle weakness, tiredness, laziness, infected/damaged fingernails, hair loss, weight gain.
But after all that stuff, I wrote really big Pain is overrated! and I'm over pain! Most of the stuff I write about is happy cause I love to be with my family and friends and come up with ideas about fun stuff to do. Like go to Medieval Times or go shopping or see a movie.
Well thats all for now,
Love, Bree
Note from Mom Jennifer:
The list of symptoms is from a child who very, very rarely had anything more than a cold!! She also did not list the numbness/tingling, difficulty sleeping, and some others... 99% of her journal is happy, cheerful drawings and entries.
We are still trying to get Brianna out daily for either a lunch, quick errand, or enjoy family or friends' visits or outings. Brianna is in good spirits and wants nothing more than to enjoy time with family and friends as she brainstorms ideas for outings. She expresses this to me and I noticed it's included in various entries in her journal.
Thank you for your words of encouragement and for keeping us in your thoughts and prayers. Especially, since the last update. I am definitely frustrated with how things have been going these past few weeks, but plan on taking a huge step to voice my concerns and be the biggest, loudest advocate for Brianna. "Mother Knows Best," and I will take the lead from now on and will not take no for an answer as my gut has been right on this entire journey. If you mess with or threaten my children (and in this case compromise their health) you will get an earful. I have never had this type of agressive personality, but since dealing with Brianna's illness I no longer believe that doctors have all the answers. Having doctors who have young children themselves make all the difference in the world. Dr. Ellison and Dr. Baker treat Brianna as they would their own children. Please pray for all children fighting cancer and for their doctors to be blessed with compassion and empathy necessary to deal with these children and their families.
Have a very Happy Mother's Day and may God Bless you and your children! May you enjoy this year's holiday with a new perspective and appreciation for the precious children God blessed you with...I know this will be the best Mother's Day ever!!
Brianna's Mom Jennifer
I started getting radiation treatments on Wednesday. We went to the Dupage Onclogy Center and they did a scan and radiation. I have to go there 30 times. It's hard to get up so early cause they do it at 7 oclock in the morning, but I can sleep in the car on the way there and on the way home. The radiation only lasts 15 minutes and we get home at 8 and I get to go back to bed. YAY! Every week I have to go to Childrens Memorial hospital for stuff and every week a nurse comes to our house to see me. Then the social worker comes and a music therapist but the good part is I only have school at home 1-5 hours. Also a psychologist comes and a doctor and if anything else happens there will be other stuff. I get tired all the time and its from the radiation. Sometimes I lose my balance and my waist and legs and feet get numb. Today Mom had to help me buckle my seatbelt because my fingers were numb. It's weird. Now I get to ride in a wheelchair if I'm really tired so I can go shopping or go for a walk without getting to tired. I'm supposed to get exercise too so I don't get to use it all the time.
A lot of the time I like to doodle and draw and write and color. I love gel pens and I drew a picture of the stupid tumor. I put beams of radiation on it and chemo and hope and faith. After everything attacked it I drew it all little and crying and I was laughing and saying Ha Ha You Shrunk! Then I wrote down all the stuff since they found the tumor that is wrong with me. Here is my list.
headaches, nausea, sore knees and ankles, backaches, throat and espohagus trouble, strep throat, ingrown toenails, dry skin, itching, back and shoulder pain, knee weakness, ankle weakness, tiredness, laziness, infected/damaged fingernails, hair loss, weight gain.
But after all that stuff, I wrote really big Pain is overrated! and I'm over pain! Most of the stuff I write about is happy cause I love to be with my family and friends and come up with ideas about fun stuff to do. Like go to Medieval Times or go shopping or see a movie.
Well thats all for now,
Love, Bree
Note from Mom Jennifer:
The list of symptoms is from a child who very, very rarely had anything more than a cold!! She also did not list the numbness/tingling, difficulty sleeping, and some others... 99% of her journal is happy, cheerful drawings and entries.
We are still trying to get Brianna out daily for either a lunch, quick errand, or enjoy family or friends' visits or outings. Brianna is in good spirits and wants nothing more than to enjoy time with family and friends as she brainstorms ideas for outings. She expresses this to me and I noticed it's included in various entries in her journal.
Thank you for your words of encouragement and for keeping us in your thoughts and prayers. Especially, since the last update. I am definitely frustrated with how things have been going these past few weeks, but plan on taking a huge step to voice my concerns and be the biggest, loudest advocate for Brianna. "Mother Knows Best," and I will take the lead from now on and will not take no for an answer as my gut has been right on this entire journey. If you mess with or threaten my children (and in this case compromise their health) you will get an earful. I have never had this type of agressive personality, but since dealing with Brianna's illness I no longer believe that doctors have all the answers. Having doctors who have young children themselves make all the difference in the world. Dr. Ellison and Dr. Baker treat Brianna as they would their own children. Please pray for all children fighting cancer and for their doctors to be blessed with compassion and empathy necessary to deal with these children and their families.
Have a very Happy Mother's Day and may God Bless you and your children! May you enjoy this year's holiday with a new perspective and appreciation for the precious children God blessed you with...I know this will be the best Mother's Day ever!!
Brianna's Mom Jennifer
Wednesday, May 6, 2009
What happened today - April 5
Hi everybody,
We went to Children's hospital today and saw some doctors again. Everybody is real happy cause I haven't been as tired as they thought I would be. Mom says the doctors are surprised because I feel pretty good, but they want to start radiation treatments real soon and give me more steroids just in case. Tomorrow will be the first scan and radiation treatment. I'll have it every day except Saturday and Sunday for 6 weeks. I sure will be glad when this is over with! It's a bummer cause me and my family were going to go on a trip in June but it looks like we won't be able to go now. I feel bad cause I got sick and it ruined the vacation but Mom keeps telling me it's not my fault. We were supposed to go to Mexico, but it's too dangerous so then we were going to the Dells but now we can't. Sometimes I feel like I'm ruining everything. Mom keeps reassuring me that it's not but I still feel bad. I just wish this would all go away and get over with so we can go back to normal! Kaitlyn and me really had fun at Disneyworld and all the other things we got to do. But now we don't get to eat out because of my special diet and when I hurt and get tired I just feel sad that I'm keeping everybody from having fun. Mom and me did get to go to the baseball game with my BFF! It was really fun. I don't care about baseball. It was just fun to be with my friends like old times.
So maybe this will get over with soon! I sure hope so. Thank you for praying for me and for all the stuff you do.
Love,
Bree
We went to Children's hospital today and saw some doctors again. Everybody is real happy cause I haven't been as tired as they thought I would be. Mom says the doctors are surprised because I feel pretty good, but they want to start radiation treatments real soon and give me more steroids just in case. Tomorrow will be the first scan and radiation treatment. I'll have it every day except Saturday and Sunday for 6 weeks. I sure will be glad when this is over with! It's a bummer cause me and my family were going to go on a trip in June but it looks like we won't be able to go now. I feel bad cause I got sick and it ruined the vacation but Mom keeps telling me it's not my fault. We were supposed to go to Mexico, but it's too dangerous so then we were going to the Dells but now we can't. Sometimes I feel like I'm ruining everything. Mom keeps reassuring me that it's not but I still feel bad. I just wish this would all go away and get over with so we can go back to normal! Kaitlyn and me really had fun at Disneyworld and all the other things we got to do. But now we don't get to eat out because of my special diet and when I hurt and get tired I just feel sad that I'm keeping everybody from having fun. Mom and me did get to go to the baseball game with my BFF! It was really fun. I don't care about baseball. It was just fun to be with my friends like old times.
So maybe this will get over with soon! I sure hope so. Thank you for praying for me and for all the stuff you do.
Love,
Bree
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