Thursday, April 30, 2009

Another Step in the Journey - April 28

Hi everybody -

Yesterday Mom took me to Edward Hospital for another MRI. This one lasted 3 hours but I was asleep. When it was over we went out for lunch. I was pretty sick to my stomach so we went back home and I went to sleep.

Note from Brianna's Parents:

Children's Memorial read the scan today around midday and called shortly thereafter to give the results. The MRI confirmed what we were pretty sure was occurring. We found that her pain along the spine was due to the cancer spreading to the spine. To say that this news was a surprise would not be accurate because Brianna was telling us of her backache pain that was primarily along the spine.
Brianna will be temporarily stopping the Avastin/CPT-11 treatments and instead be starting about a 4 - 6 week radation treatment plan that will be focused on the spine. We will be monitoring her pain level and giving her the appropriate dosage as directed by the doctors. We are going to be figuring out where in the next couple days. Hopefully we can find a facility closer to home that she can take the radiation treatments as opposed to driving 1 1/2 hours each way to Northwestern Memorial Hospital where she could get radiation treatments if we wanted to.
This weekend Brianna will have her Grandma and Grandpa Sharp and her Aunt Faith and Aunt Julie come into town to visit this weekend. Also her Aunt Lisa and cousin Braeden and Hailee will be flying in town Thursday night and staying the weekend to visit with her as well.
We appreciate all the thoughts and prayers for Brianna as those are what help sustain us through each day. We appreciate all that everyone has done for us as a family and will continue to do for us as a family. It can be hard to stay focused at times but everytime we see Brianna still having good days where she is her cheerful, bubbly smiley self we are reminded that we have the strongest daughter in the world. She has been an inspiration to us as her parents and we are thankful that we are lucky enough to be her parents. She is truly amazing.
Please keep Brianna, Max, Kole, Alexis, Andrew, Caleb and all the children that are the warriors that fight the monster that is pediatric brain cancer every day. We are in awe of all of those children!
Thank you again for stopping in to check in on Brianna !!!
With hope and gratitude,
Matthew, Jennifer, Brianna and the rest of the family!

Friday, April 24, 2009

Healing Prayers over the Weekend

Hi Everybody -

Mom and I are going to a religious retreat with Aunt Georgia. I get to meet a lady named Colleen Willard. She was healed from a brain tumor they couldn't operate on. I also get to meet Mother Nadine from the Intercessors of the Lamb in Omaha and a visionary. We are going to pray a lot and it will be really good to be with people who have strong faith.
Mom can explain it better.
Love,
Bree

Note from mom Jennifer;

This weekend at the retreat we will be focusing on God's mercy and for the laying of hands to physically heal Brianna. Please join us in our prayers this weekend that Brianna will be blessed with God's mercy and grace!
I previously mentioned how Brianna has deepened her faith and that her personality is one to always put others first. Two more examples I will share: First, Brianna was in the ER one night with an excrutiating headache and she said, "Mom, I want to say something, but I can't." I said, "What do you mean?" She responded, "I really need to say something, but God will be mad at me." I finally convinced her that she can tell me and she stated, "I feel like hell!" Another example was with her most recent episode which was the worst ever as she was not able to find any relief. She noticed that Bob had become teary eyed and grab him and told him how much she was sorry for upsetting him! If you recall, she did that to me as well...based on her level of pain it's hard to believe she could think about our feelings.
Today, Brianna and I are going to visit my school (Lincoln-Way North High School) so we can deliver Brianna Brigade t-shirts to visit and meet with a lot of my friends who have been an unbelievable support network. They have been so generous and kind during this difficult period and it is very important for us to give and receive LOTS OF HUGS!!
We had a very speedy delivery of the chicken ginger soup last night, secretly delivered by the "Soup Elf." Brianna could not wait to eat it so she decided it would be her afternoon snack! WOW, that was fast service as I only posted a request for the recipe and several hours later the fresh soup was delivered!! Thank you!!
With the long weekend religious retreat and the fact that Brianna will undergo a 3 hour MRI for her total spine, you will have to wait until Monday afternoon to hear from us as to how well things went for us.
Finally, a friend of the family, Katie Slou is organizing a fundraiser where we will be selling spirit cups. I am including her email as a contact in case you have any questions or are interested in obtaining an order form. Proceeds from the sale of the spirit cups will go towards the "Brianna Sharp Benefit Fund." We would like to thank you in advance for your support. (I hear the cups are REALLY cool and hope that you will consider contacting Katie. Her email is listed below:
logan216@sbcglobal.net (Katie Slou)
God bless you all for your kindness and generosity. We are most appreciative of your prayers and words of encouragement as they allow us to face each day with amazing strength and courage. Brianna had a good day yesterday (Wed. she slept most of the day) as Aunt Amy and her cousin Colleen treated us to lunch at Pizza Fusion (DELICIOUS) and she got her exercise by helping me shop at Whole Foods.
"Patience is having faith in God's timing!" Thank you Joellyn for the line about how God laughs whenever anyone tries to spell out timelines. It made me laugh and helped me realize that the news we received from doctors giving us a timeline is a joke!! Only God knows His plans for Brianna and the fact she is so strong tells us that anyone who is given a timeline needs to be patient, take things one day at a time, and live every moment to the fullest, while continuing to believe that His plan is perfect and Brianna will always be safe!
God bless!!Jennifer


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Fundraiser on Saturday - April 25

Note from dad Matt -

On Saturday from 1:00 - 4:00pm at Danny's Pub and Grill in Naperville we are having a fundrasier for Brianna! Its $20 per person( $10 goes to Brianna) which includes 2 drink tickets for soda,domestic draft or well drink and lunch - burger,chicken or deli sandwich with french fries, soup or salad. We will be raffling off some great prizes. Come on out! It should be a great time! If you can't make it and still want to help then go to www.curebrianna.com to find out how!
Host: Danny's Pub and Grill/ Lori Young-Higaki
Date: Saturday, April 25, 2009
Time: 1:00pm - 4:00pm
Location: Danny's Pub and Grill
Street: 1550 N Rt 59
City/Town: Naperville, IL
Also Good Luck to the CureBrianna run team that will be running in the ABTA 5K walk and run tomorrow at Soldier Field in the morning! I know that I couldn't pull that off well because I was out of breath just jogging from the Grizzly House to the Chili Care Center at St. Jude!
Have a great day everyone!
From Brianna's dad, Matt

First Day of New Treatment - April 21

Hi everybody -

I started my new treatment today at Children's Memorial hospital. I like St. Jude a whole lot better. First of all, it took almost 2 hours to get to the hospital cause there was so much traffic. I was bored ALL day! I wish I could just go back to St Jude. Plus on the way home I was really sick to my stomach but they said its the medicine that does that. After a while I felt better but I wasn't very hungry. I'm just tired so I'll let my parents finish this.

Note from mom Jennifer:
Brianna is right, we were definitely spoiled at St. Jude. We are not saying that Children's is not a wonderful place, but what you experience at St. Jude can not be put into words. While heading home during rush hour traffic, Brianna said she would rather fly back and forth to St. Jude and that she doesn't like CMH. I am sure her irritability and most of the words can be chalked up to her emotions/feelings pouring out as she begins a new treatment. She felt terribly nauseated on the way home but did not vomit. As frustrating as it is to listen to Brianna complain about anything and everything I have remind myself that it's not Brianna...it's the tumor and/or the medication. Her nausea only lasted for an hour or two and later that evening she was talkative and laughing hysterically as she watched Funniest Home Videos. She did not feel up to eating any dinner so she had some applesauce before bed. Brianna slept with me and as she was falling asleep began listing all of the foods she was craving. Around 2 AM she woke up and decided she was ready to eat. I went downstairs to get her a bowl of cereal and some nausea medicine. She slept off and on until 11 AM where she finally perked up and made Miso Soup with Seaweed for lunch. (I find it hard to believe that she can complain about every single thing on her diet that Bob and I find delicious, yet she enjoys the most disgusting soup I have ever smelled or tasted!!)
IMPORTANT: THE ANONYMOUS CHEF OF THE GINGER, CHICKEN NOODLE SOUP LEFT A COUPLE MONTHS AGO IN OUR COOLER NEEDS TO IDENTIFY THEMSELVES OR LEAVE AN ANONYMOUS RECIPE!!! IT'S BRIANNA'S FAVORITE DISH AND SHE CONTINUES TALKING/ASKING ABOUT IT!!
I am going to let Matt take over and talk about the medical part of it all and what he knows....

Note from dad Matt -
Alright.... I guess I am the relief pitcher here so here it goes.
We got in at 8:30am and met with a nurse to take all the vital signs, height, weight, etc. Then she had a blood draw to get sent to the lab so that we could make sure her WBC and Platelet levels were good enough to start treatment. That took about a half an hour before the results came back and all was fine there.
We were lead back to the Day Hospital where Brianna was hooked up an an IV to make sure she was hydrated with fluids for an hour before the CPT-11 (one component of the treatment) was to be administered. CPT-11 is also known as Irinotecan which is meant to damage the DNA and RNA in each cancer cell so that it doesn't have the ability to divide and multiply. That takes about an hour to administer and then more fluids were given before the Avastin was admisitered and that again was a little over an hour. Finally a fluid IV and an antibiotic was given and that took 2 hours so needless to say it was a rather long day. For the next day or two she may experience some nausea and fatigue.. there are other side effects but those two are the most common.
One thing that Brianna was given was MC Contin which is a controlled release of morphine and that should help her feel as comfortable as possible. She has her regular dosage of pain meds if that controlled release doesn't control a larger pain episode that Brianna might experience.
We are planning on doing an MRI of the spine just to get some more insight into what might be causing her back pain. We are still committed to continue to look at all options including biopsy. I believe that the only way to get to a cure of this disease to biopsy the tissue to see what is actually in the tumor. Other countries like France and Germany already do it as a matter of course when a patient is given this diagnosis. We would just need to find a doctor in the U.S. that would be comfortable with doing the procedure.
We will continue to keep everyone updated as we move forward but we really appreciate everyone stopping in and offering their kind words of encouragement. It gets us through the rough days when Brianna is not feeling so great. It means alot to us.
Matt, Jennifer and Brianna

Tuesday, April 21, 2009

New Photos and New Treatment - April 20

Note from Brianna's mom, Jennifer:

Well, I was finally able to post the NEW PHOTOS from Brianna's surprise 13th birthday party along with her birthday event with Kole (our DIPG buddy from St. Jude who turned 5) and the birthday outing for Brianna and Kaitlyn with Ms. Beauregard at Color Me Mine. I also posted two pictures as proof of Kaitlyn's words written on the patio. She wrote the most loving note to Brianna. You will have to click on the larger images if you want to see the entire picture for each thumbnail. We hope you enjoy as you can see how wonderful she looks and how incredibly happy she was at her surprise party!! Thank goodness we postponed the St. Jude trip for one more week as we were able to enjoy her 13th birthday without any knowledge of the tumor progression.
Unfortunately, we have had a rough two days as she experienced a painful episode Sunday evening and was not feeling well for a majority of the day today. She slept most of the day today with a little energy burst in the early evening when she decided to paint. Around 8:00 this evening she experienced her worst episode ever where the morphine didn't kick in for at least an hour and she was begging for an ambulance to take her to the hospital. It broke our hearts is a huge understatement, as there is nothing we can do but wait for the medicine to kick in. Where it usually only takes 10-15 minutes, tonight it took at least an hour before she found relief and even then her pain was at a 7 for another hour. Recently, her pain is mostly in her back (between her shoulder blades) and when it gets really bad the pain shoots into her head causing the headache to become a 10. Bob and I feel helpless as all we can do is hold her, pray for her, and anxiously wait for the nurse to arrive. The pallative nurse is not left to do anything but talk with her, check vitals, and record the information in the chart. She stayed long enough to make sure Brianna was comfortable and o.k. with her leaving.
After these past two days we can not wait to get to Children's to begin the NEW TREATMENT tomorrow. Please pray that all goes well and that the new treatment proves to be effective and also has limited side effects that she will have to deal with. We are in for a very long day and hope that all goes well. A little prayer to avoid the evening rush hour would also be helpful! :-)
Thank you for your outpouring of love and prayers over the past week and a half as I have been blessed with a huge amount of peace! I have mentioned to some people that I could say I am in shock or denial, but I know that it is neither...it is a grace that is something I can not put into words and I am left feeling that Brianna is now (actually always was) 100% in God's hands and I wouldn't have it any other way. We will pray for a miracle healing, pray that He is guiding the doctors caring for DIPG children, and we will fight as long as she is willing to endure and has the energy and spirit that still shines though. We will also pray that our will is one with God's.
We will be attending the religious healing retreat this weekend and will have a visionary pray over her, along with Colleen Willard (who was miraculously healed from an inoperable brain tumor), and Mother Nadine from the Intecessors of the Lamb in Omaha, Nebraska. Please pray that Brianna be blessed with a healing in mind and body! God bless you all for supporting us through this difficult journey! We are eternally grateful for all of your kind words and unending prayers!
God Bless! Jennifer

Monday, April 20, 2009

A Weekend to Remember - April 19

hi everybody!

This weekend was great weekend to remember! Friday night my Aunt Lisa and Uncle Brad paid for a presidential suite at Indian Lakes Resort in Bloomingdale and Kaitlyn and me both got a pedicure and a manicure. Then we rented a moved and got to order room service for dinner! We felt like movie stars it was so much fun! Saturday morning we ordered breakfast in the room and then we played miniature golf and THEN we had Swedish massages!! We LOVED getting those massages! Dad said he would never forget this weekend and he really has to thank my Aunt Lisa and Uncle Brad Ballantine! We love you guys! Thank you for giving us a great night!

Saturday we went to Grandma and Grandpa Spinello's and had a great day. ALL us girls got their hair done by Teresa and Aunt Ania took came and take some great pictures of us and our family!
Well, I'm tired now so my dad can tell you the rest.
Love, Bree

Note from Dad Matt:

I would like to thank Ania taking time out of her busy weekend to make this weekend special and I can't thank her enough! I would also like to thank my inlaws John and Madeline for providing us with a beautiful background that no other portrait studio could ever provide!
After spending that time at their house we went to Dave and Busters and had an awesome time! We ate and played games and Brianna was actually starting to experience some pain at the start of the evening but actually forgot about it when she starting playing games! She even said that it was the best place that she had ever been to play games! Hopefully we can do Dave and Busters Part 2 when Grandma and Grandpa Sharp come up in two weeks because they are looking forward to enjoying a fun filled weekend with their granddaughters.
Sunday was the Blue Hair for Brianna Day! ( as their youngest sister Gianna calls it) My mom was gracious enough to open her home for the fundraiser and so many of Brianna and Kaitlyn's friends and even some of her teachers came out to support Brianna! Earlier in the day she was rather tired but once she saw how many of her friends came to support her she was really happy and perked right up! Ania came again to take some great pictures and Teresa came to put those Blue hair extensions in everyone's hair with help from her daughter ( who is also named Gianna!). It was a great day and we all had a great time! Even I got a hair extension but don't worry I won't post a photo! I don't think my wife likes to look at me with it in my hair!
I would like to thank my wife, Maria for planning this fundraiser! She and Teresa put alot of planning into it and Maria got the food and organized it all! I would also like to thank Brianna's teachers and some staff that came to the event. It really warms the heart to see all that support that Brianna got! Some of the Romeoville Rebel volleyball players came to support Brianna as well! Thank you and we appreciate all of your support!
Brianna's Grandma Close and Aunt Jackie and cousin Lauren came to show support as well. Brianna always loves to spend time with them and was excited to see them come to the event. Brianna was growing tired towards the end of the event and it was time to head home with her mom and Bob. We really appreciate all the help we have received from everyone!
As many of you know, Brianna starts her new round of chemo on Tuesday morning at 8:30. It will last about 5 hours and be administered through her port. We ask that all of you have her in your thoughts on that day as we enter this next part of our journey.
An update will be posted on Wednesday after we get through the events of Tuesday!
Thank you all stopping in and checking in on Brianna!
Thank you for all your support!
Matt, Maria, Brianna and the rest of the gang!

Kaitlyn's Writing - April 18

Hi everybody. The first part of this is from my sister Kaitlyn.
Mom saw her writing and so she wanted to put it in here.
Love,
Bree

From Kaitlyn:
BRIANNA ROX AND WILL ALWAYS BE LOVED!!!
BRIANNA IS THE BEST SIS ANYONE CAN HAVE!!! AND I LUV HER WITH ALL MY HEART! HOPE SHE GETS BETTER SOOOON! LUV LUV LUV LUV LUV LUV LUV LUV UUU W/W/ ALL MY HEART! I LOVE BRIANNA AND I HOPE THAT SHE GETS BETTER! I WILL PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!! I LUV BRIANNA WITH ALL MY HEART AND ALWAYS WILL KS

From mom Jennifer:
As I was sitting on the patio yesterday afternoon/evening I noticed that Kaitlyn wrote something in chalk around the entire perimeter of our concrete patio. The above are words Kaitlyn wrote (without a single edit on my part) I walked the entire permimeter taking pictures to capture the entire short story. (If I did not have proof, Brianna would never believe it if I told her...even though I have two other witnesses!)

She signed her initials inside a heart. Anyone that is close to Brianna and Kaitlyn know that they have a "love / hate" relationship, as many sisters have while growing up with a sister close in age. They bicker and poke fun of each other constantly! Well, now I have proof in photos in case she doesn't believe me or my two witnesses. Thank goodness I discovered the words before a good rain washed it away.
It melted my heart to read those words. Please do exactly what Brianna's younger sister (11) says:
"PRAY AND HAVE FAITH THAT SHE WILL GET BETTER!!!!!!!!!!!!"
God bless you and thank you for all of your prayers and support!
PS-Our other computer is finally working so I will be posting the long awaited pictures of Brianna's 13th birthday, picture with our buddy Kole, and I might even include a pic of Kaitlyn's words!

Love to all from Mom Jennifer