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
Tuesday, May 5, 2009
Treatment Decision - May 5
Today I am letting my Mom write the blog because it's all about stuff I don't like to talk about. I want so save my energy for the fun stuff we're gonna get to do and I get tired. Thank you for reading this.
Love,
Bree
Note from Mom (Jennifer):
We decided to seek radiation therapy at Central DuPage Hospital in Winfield, IL. Brianna's home nurse and the doctor who we consulted with discussed Brianna's needs with DuPage Oncology Radiology and with Dr. Jason from Children's. They assured us that they would not recommend her receiving treatment there unless they were absolutely certain Brianna's needs would be met. Avoiding the M-F commute to Northwestern for 6 weeks is a priority as we would like to make the experience the best for Brianna by allowing her to maximize time at home with family and friends. She will go this Wednesday for the simulation where the radiologists will look at her scans and calculate the degrees of radiation, etc. Her first radiation treatment will begin next Monday. We are anxious to get the treatment started as she has been experiencing numbness in her feet, waist and tingling in her hands. She no longer complains of headaches and her back pain has become manageable with the increase in steroid medication. Brianna has adjusted to her regular morphine medication as she is not as drowsy as she was over a week ago.
Since Brianna's pain has become manageable and her energy has improved, she has been able to enjoy more activity. We have to keep a close eye on her to make sure she doesn't do too much, but she enjoys visits from friends and family and even ventures out for short periods of time. She enjoys going to an occassional lunch or shopping. This past weekend she was able to enjoy time with Aunt Jackie, Grandma & Grandpa Sharp, Aunt Julie, & Aunt Faith and Aunt Lisa. Aunt Jackie treated her to Pizza Fusion and frozen yogurt, Aunt Julie and Aunt Faith traveled from Kentucky and Champaign, IL to spend the afternoon with her (unfortunately we had an afternoon appointment, but they tagged along, happy to just have time with Brianna), and they met up with grandma and grandpa Friday evening. Brianna and Kaitlyn enjoyed a weekend with their dad and his extended family. The weather was beautiful over the weekend and Brianna was able to enjoy quality time with everyone.
Grandpa & Grandma Sharp presented Brianna and Kaitlyn with incredibly special gifts! They gave Brianna a rosary that was blessed at the Vatican by Pope John Paul, while Kaitlyn's rosary was blessed by a priest in Auschwitz, Poland! I am positive that Brianna will be carrying the rosary with her at all times...an unbelievable gift and we can not thank them enough! Grandma and grandpa were able to witness Brianna's faith because the Spinello family hosted a special mass at their home. Matt admitted feeling inspired by watching Brianna's attentiveness and sense of peace throughout the mass. We are grateful for the blessing and want to thank everyone who made it an extra special occassion.
Today, we will be visiting Children's Memorial for Brianna's appointment. She will begin the new chemo medication which will be in pill form so today is a routine exam, blood work, and vitals. Today is going to be AN EXTRA SPECIAL DAY because we will have the company of our very close friends. Brianna's BFF and her family are Cubs fans. We gave them an offer they couldn't refuse...free tickets to the Cubs game. If you are one of my fellow Sox fans (Siemann family, Sue & Phil, Katy Arme, etc.) please know that I am wearing black and plan on enjoying only food and sun!) We had to make last minute plans as Make A Wish called and offered us the tickets. I decided to call back after turning them down because I realized this would be a wonderful opportunity for Brianna and her friend to have a great time together...and it was important to me that I have someone who knows their way around the city!! Bob is traveling out of town and I tend to have trouble with the Garmin on occassion. I must apologize for "tricking" them into driving and I would like to thank them in advance for being our chauffeur. Thanks to our friend's offer to drive, Brianna and her BFF might be spared from hearing inappropriate language since it is a well-known fact that I can't stand traffic and "idiot drivers."
Please pray for a "good day" for Brianna so that she may thoroughly enjoy the occassion with her best friend. We hope her symptoms remain stable or improve and that her energy level allows her to participate in occassional activities/outings with friends and family.
We continue to keep all of our friends and families in our prayers. Max Lacewell, Kole Miller, Liam Reilly, Caleb Spady, Ravyn Finch and all the DIPG warriors!! Please pray for daily strength and courage for each of these children and their families. This is an incredibly difficult road and each of these children and their families allow us to be reminded of what's truly important and they inspire people every day!
God Bless!!
Jennifer and all of Brianna's Family
Love,
Bree
Note from Mom (Jennifer):
We decided to seek radiation therapy at Central DuPage Hospital in Winfield, IL. Brianna's home nurse and the doctor who we consulted with discussed Brianna's needs with DuPage Oncology Radiology and with Dr. Jason from Children's. They assured us that they would not recommend her receiving treatment there unless they were absolutely certain Brianna's needs would be met. Avoiding the M-F commute to Northwestern for 6 weeks is a priority as we would like to make the experience the best for Brianna by allowing her to maximize time at home with family and friends. She will go this Wednesday for the simulation where the radiologists will look at her scans and calculate the degrees of radiation, etc. Her first radiation treatment will begin next Monday. We are anxious to get the treatment started as she has been experiencing numbness in her feet, waist and tingling in her hands. She no longer complains of headaches and her back pain has become manageable with the increase in steroid medication. Brianna has adjusted to her regular morphine medication as she is not as drowsy as she was over a week ago.
Since Brianna's pain has become manageable and her energy has improved, she has been able to enjoy more activity. We have to keep a close eye on her to make sure she doesn't do too much, but she enjoys visits from friends and family and even ventures out for short periods of time. She enjoys going to an occassional lunch or shopping. This past weekend she was able to enjoy time with Aunt Jackie, Grandma & Grandpa Sharp, Aunt Julie, & Aunt Faith and Aunt Lisa. Aunt Jackie treated her to Pizza Fusion and frozen yogurt, Aunt Julie and Aunt Faith traveled from Kentucky and Champaign, IL to spend the afternoon with her (unfortunately we had an afternoon appointment, but they tagged along, happy to just have time with Brianna), and they met up with grandma and grandpa Friday evening. Brianna and Kaitlyn enjoyed a weekend with their dad and his extended family. The weather was beautiful over the weekend and Brianna was able to enjoy quality time with everyone.
Grandpa & Grandma Sharp presented Brianna and Kaitlyn with incredibly special gifts! They gave Brianna a rosary that was blessed at the Vatican by Pope John Paul, while Kaitlyn's rosary was blessed by a priest in Auschwitz, Poland! I am positive that Brianna will be carrying the rosary with her at all times...an unbelievable gift and we can not thank them enough! Grandma and grandpa were able to witness Brianna's faith because the Spinello family hosted a special mass at their home. Matt admitted feeling inspired by watching Brianna's attentiveness and sense of peace throughout the mass. We are grateful for the blessing and want to thank everyone who made it an extra special occassion.
Today, we will be visiting Children's Memorial for Brianna's appointment. She will begin the new chemo medication which will be in pill form so today is a routine exam, blood work, and vitals. Today is going to be AN EXTRA SPECIAL DAY because we will have the company of our very close friends. Brianna's BFF and her family are Cubs fans. We gave them an offer they couldn't refuse...free tickets to the Cubs game. If you are one of my fellow Sox fans (Siemann family, Sue & Phil, Katy Arme, etc.) please know that I am wearing black and plan on enjoying only food and sun!) We had to make last minute plans as Make A Wish called and offered us the tickets. I decided to call back after turning them down because I realized this would be a wonderful opportunity for Brianna and her friend to have a great time together...and it was important to me that I have someone who knows their way around the city!! Bob is traveling out of town and I tend to have trouble with the Garmin on occassion. I must apologize for "tricking" them into driving and I would like to thank them in advance for being our chauffeur. Thanks to our friend's offer to drive, Brianna and her BFF might be spared from hearing inappropriate language since it is a well-known fact that I can't stand traffic and "idiot drivers."
Please pray for a "good day" for Brianna so that she may thoroughly enjoy the occassion with her best friend. We hope her symptoms remain stable or improve and that her energy level allows her to participate in occassional activities/outings with friends and family.
We continue to keep all of our friends and families in our prayers. Max Lacewell, Kole Miller, Liam Reilly, Caleb Spady, Ravyn Finch and all the DIPG warriors!! Please pray for daily strength and courage for each of these children and their families. This is an incredibly difficult road and each of these children and their families allow us to be reminded of what's truly important and they inspire people every day!
God Bless!!
Jennifer and all of Brianna's Family
Just Tell Me What I Gotta Do - April 30
My parents told me that the cancer is in my spine and I have to have radiation and chemotherapy for a few weeks. It isn't bothering me too much cause I can still go up and down stairs and walk and run a little bit. Sometimes my back hurts now instead of my head. I get a little more of the steroid medicine so I get hungry more. Sometimes I get to have regular food instead of my special diet. I guess I'm getting used to the organic weird stuff cause when I eat regular food I don't feel so good. I told Mom I would listen to her from now on cause she warned me that I wouldn't feel good if I ate regular food. She was right! My mom wants to write about my treatments so that's all from me. Thank you everybody for all your prayers.
Love,
Bree
Note from Mom Jennifer:
"JUST TELL ME WHAT I GOTTA DO!" Brianna's words once again after we told her that the cancer spread to the spine and she would have to undergo 4-6 weeks radiation and take a new chemotherapy medicine. She once again took the news better than we would have expected and that allowed us to breathe a sigh of relief as we felt like we were re-living the original diagnosis all over again. The MRI showed that the cancer spread through the entire spine and the doctors are amazed once again that Brianna's outward appearance shows no signs of the seriousness of the MRI results. God is blessing Brianna with unbelievable strength and courage as she is still bouncing up and down stairs, walking, and even running/jogging for a little bit (like to the neighbors house) Her back does give her problems and has taken place of any headache she experienced previously. We increased her steroid medication once again and I think we are beginning to see a slight increase in her appetite. She has not been complaining of her diet as much since we decided to allow an occassional "break." She has been so completely miserable for so long and no matter how many times I found a healthy alternative she had convinced herself that organic tastes terrible (even though it is the opposite). Since we let up a little bit and give her some ownership over her diet she actually makes the healthy choice most of the time. She has also discovered that her body is used to the healthy, organic, limited sugar and dairy diet so when she tries to eat anything else she feels terrible. I warned her on two occassions and sure enough, she felt so bad she assured me she would listen to me from now on...
We had a great religious retreat last weekend and had a special meeting with Mother Nadine from the Intercessors of the Lamb. We left with a wonderful peace after Mother Nadine took time to pray for us and share her insights. Though Brianna was only able to make it through the first half of the day Saturday she did pick up enough to ask questions and share what she learned from the experience. At the retreat I had a flashback to one of the best memories of Brianna at 3 or 4 years old. She was supposed to be taking a nap on my bed but I heard her talking and playing around. I decided I would crack the door and peek to see what she was up to. She was sitting on her knees with a baby doll blanket draped over her head. She was holding her baby doll wrapped in "swaddling clothes" and was singing "Away in a Manger." Her pre-school class was learning the song for their Christmas program and Brianna decided she would practice the song while pretending to be Mary. No one had taken on that role so it was beautiful to see her acting out the song. Of course the video camera was not working...just liked it wasn't working when she fell asleep on the toilet at 3 years old!! (Don't let her know I shared that-we have a snapshot to prove it!)
Brianna spent several days sleeping and was having a difficult time adjusting to a new medication schedule and new treatment. However, the past three days she has been in better spirits and has had more energy and less pain. Today we went out to lunch and a movie with Dr. Ellison and her four kids (Aidan, Talia, Logan, and Gavin.) Brianna and Kaitlyn love little kids and enjoyed giving them special gifts. Brianna created a mermaid painting titled "Talia," (Dr. Ellison's daughter's name) and she did a beautiful job! Talia was very excited and we were able to take photos of the excitement and of Brianna autographing the creation for Talia. Brianna created the painting with pink and purple which will be the colors in Talia's new bedroom. We found out that Logan said, "Well, I like Nemo." and Aidan said, "I like Star Wars." Looks like the orders are going to start piling up. We must thank Dr. Ellison for a wonderful day as Brianna was out from 10:30-4:00 feeling great and loving the company!!
Tomorrow we are meeting with the DuPage Oncology Radiologists out of Central DuPage Hospital in Wheaton, IL. They mostly work with adults, but have also worked with children. Our home nurse and the doctor we are assigned for home health both agree that this recommendation wouldn't happen unless they were 100% comfortable in their ability to treat Brianna. This is wonderful news as it will save us a daily commute to Northwestern as radiation treatments are Monday-Friday for 4-6 weeks.
I want to thank Lori Miller (Kole's mother-our little buddy at St. Jude) for the proverb she emailed to me after receiving the latest round of news. I am including it for you as it gave me peace once again that we can continue to remain strong and hopeful throughout our next uphill battle. Brianna, Kaitlyn and I have been listening to a Miley Cyrus song that has great meaning to us right now...just like the Jonas Brothers song, "Little Bit Longer." Miley's song is titled, "Climb." The lyrics are perfect!! Thank you for your support and please continue to pray for all of our DIPG warriors (Kole, Max, Liam, Caleb, Andrew, and many others)
Trust in the Lord with all your heart and lean not on your own understanding. Proverbs 3:5
God Bless!
Brianna's Family
Love,
Bree
Note from Mom Jennifer:
"JUST TELL ME WHAT I GOTTA DO!" Brianna's words once again after we told her that the cancer spread to the spine and she would have to undergo 4-6 weeks radiation and take a new chemotherapy medicine. She once again took the news better than we would have expected and that allowed us to breathe a sigh of relief as we felt like we were re-living the original diagnosis all over again. The MRI showed that the cancer spread through the entire spine and the doctors are amazed once again that Brianna's outward appearance shows no signs of the seriousness of the MRI results. God is blessing Brianna with unbelievable strength and courage as she is still bouncing up and down stairs, walking, and even running/jogging for a little bit (like to the neighbors house) Her back does give her problems and has taken place of any headache she experienced previously. We increased her steroid medication once again and I think we are beginning to see a slight increase in her appetite. She has not been complaining of her diet as much since we decided to allow an occassional "break." She has been so completely miserable for so long and no matter how many times I found a healthy alternative she had convinced herself that organic tastes terrible (even though it is the opposite). Since we let up a little bit and give her some ownership over her diet she actually makes the healthy choice most of the time. She has also discovered that her body is used to the healthy, organic, limited sugar and dairy diet so when she tries to eat anything else she feels terrible. I warned her on two occassions and sure enough, she felt so bad she assured me she would listen to me from now on...
We had a great religious retreat last weekend and had a special meeting with Mother Nadine from the Intercessors of the Lamb. We left with a wonderful peace after Mother Nadine took time to pray for us and share her insights. Though Brianna was only able to make it through the first half of the day Saturday she did pick up enough to ask questions and share what she learned from the experience. At the retreat I had a flashback to one of the best memories of Brianna at 3 or 4 years old. She was supposed to be taking a nap on my bed but I heard her talking and playing around. I decided I would crack the door and peek to see what she was up to. She was sitting on her knees with a baby doll blanket draped over her head. She was holding her baby doll wrapped in "swaddling clothes" and was singing "Away in a Manger." Her pre-school class was learning the song for their Christmas program and Brianna decided she would practice the song while pretending to be Mary. No one had taken on that role so it was beautiful to see her acting out the song. Of course the video camera was not working...just liked it wasn't working when she fell asleep on the toilet at 3 years old!! (Don't let her know I shared that-we have a snapshot to prove it!)
Brianna spent several days sleeping and was having a difficult time adjusting to a new medication schedule and new treatment. However, the past three days she has been in better spirits and has had more energy and less pain. Today we went out to lunch and a movie with Dr. Ellison and her four kids (Aidan, Talia, Logan, and Gavin.) Brianna and Kaitlyn love little kids and enjoyed giving them special gifts. Brianna created a mermaid painting titled "Talia," (Dr. Ellison's daughter's name) and she did a beautiful job! Talia was very excited and we were able to take photos of the excitement and of Brianna autographing the creation for Talia. Brianna created the painting with pink and purple which will be the colors in Talia's new bedroom. We found out that Logan said, "Well, I like Nemo." and Aidan said, "I like Star Wars." Looks like the orders are going to start piling up. We must thank Dr. Ellison for a wonderful day as Brianna was out from 10:30-4:00 feeling great and loving the company!!
Tomorrow we are meeting with the DuPage Oncology Radiologists out of Central DuPage Hospital in Wheaton, IL. They mostly work with adults, but have also worked with children. Our home nurse and the doctor we are assigned for home health both agree that this recommendation wouldn't happen unless they were 100% comfortable in their ability to treat Brianna. This is wonderful news as it will save us a daily commute to Northwestern as radiation treatments are Monday-Friday for 4-6 weeks.
I want to thank Lori Miller (Kole's mother-our little buddy at St. Jude) for the proverb she emailed to me after receiving the latest round of news. I am including it for you as it gave me peace once again that we can continue to remain strong and hopeful throughout our next uphill battle. Brianna, Kaitlyn and I have been listening to a Miley Cyrus song that has great meaning to us right now...just like the Jonas Brothers song, "Little Bit Longer." Miley's song is titled, "Climb." The lyrics are perfect!! Thank you for your support and please continue to pray for all of our DIPG warriors (Kole, Max, Liam, Caleb, Andrew, and many others)
Trust in the Lord with all your heart and lean not on your own understanding. Proverbs 3:5
God Bless!
Brianna's Family
Subscribe to:
Posts (Atom)
