Update from Brianna's Mom Jennifer:
So....I just spent almost the last hour working on today's update and then lost it!!! This has happened on two other occassions and it upsets me so much that I put the time in and begin editting only to lose all of it...then I can't bring myself to re-write the update until later!!
I will at least cover what the title is for and ask that you visit www.gratefulness.org and click on "GROUP" Enter the initials "BLS" for the group name and follow the directions to light a candle for Brianna. We woud like everyone to do this in order to allow Brianna to have a visual allowing her to see how many people are praying for her. Please light a candle and forward it on to everyone you know so Brianna can see the overwhelming support she has on this difficult journey!!
"Be still in the presence of the Lord, and wait patiently for him to act." Psalm 37:7
"Patience is having faith in God's timing"...something I must always repeat to myself when I feel frustrated having to watch Brianna endure such a difficult journey!!
Something to show all of you the type of person Brianna is and to use as an example of how she always cares about others first is our experience this past Sunday evening.
Brianna experienced another excrutiating migraine headache, which for us is hard to deal with as the symptoms/effects are the same as those caused by the tumor. Crying/screaming in pain, nausea, vomiting, dizziness, etc. Though we want to run to the ER we know that recently it was determined that her tumor is stable, and maybe even looks better than a previous MRI. Brianna swore that Sunday evening she had, "the worst headache of her entire life!" She has always been dramatic but after last Sept/Oct. how do you know for sure when she needs medical attention and when she needs to get through it on her own??
Well, Bob and I were trying to help her best we could giving her medicine, icepacks, holding her, praying for her, and trying to get her to relax and breathe...it took almost 2 hours for her to finally settle down!! In the middle of all of the crying and yelling, etc. Brianna must have seen that I was upset and apologized to me. I asked her why she was saying she was "so sorry" and she said, "I'm sorry you have to deal with this and see me go through all of this." As my heart was breaking I grabbed her and told her to never worry about anything except getting better! I want her to focus on fighting he tumor and not about making sure we are all o.k. I want Brianna to be selfish and put herself #1 so that all of her energy can be used to fight this battle.
That is probably the best example to show you Brianna's caring, loving nature and why she is truly a special child!!
Thank you for your continued love and support! God Bless!!
Wednesday, March 25, 2009
After the Wedding - March 21
Hi everybody. Well, we're back from Aunt Julie's wedding and there is so much to tell that it would take me forever to write it all. My dad has some stuff to write about and I'm kind of tired.
Bree
Note from Brianna's Dad Matt:
Well we arrived back from Peoria after Brianna, Kaitlyn, Gianna and I had gone to their Aunt Julie's wedding! We left Thursday after Jennifer had picked up Brianna and Kaitlyn from school and we headed out around 1:00 Thursday for the 2 hour drive to see their Grandpa and Grandma Sue and their Aunt Faith and Aunt Julie and meet their new Uncle Josh!
We had the rehearsal dinner Thursday night and Brianna and Kaitlyn were originally placed in the role of handing out programs but were quickly recruited to help their little sister Gianna down the aisle to be flower girl as we saw that Gianna would be most comfortable with them helping her. Gianna really looks up to all of her siblings but is always excited when its a day where she gets to see them.
We went to Alexander's Steakhouse where Brianna got to visit some more with her Grandpa and Grandma Sue and was her usually laughing and smiling self! Her energy level was pretty good that night until we got back to Grandpa and Grandma's house and then she was ready to take her meds and crash for the night! That first night was rough because Gianna woke up in the middle of the night but Brianna was a great big sister and was helping to get her to calm down and did a great job.
Friday we woke up and had breakfast and as her Aunts got ready for the wedding Brianna just chilled out and played with my iTouch and talked to everyone at the house. Soon it was time to get ready and both Brianna and Kaitlyn looked so nice in their dresses for the wedding! We left around 3:00 to head over to the wedding. All 3 girls fulfilled their roles perfectly and did a wonderful job.
When it was time for the wedding reception Brianna was starting to get really tired but hung in their long enough to make it through the wedding party introductions and the toast and eat a little something before she crashed for a while in Aunt Faith's room. But not before she got to meet many of Grandma Sue's friends and co-workers that have become quite big fans of Brianna and finally got a chance to meet her in person! It's always nice to meet those who have given their love and support to Brianna from day one and we appreciate all of you that tune in every time you get one of these alerts of an update! Your notes and words of encouragement not only help Brianna with her battle but also lifts our spirits as Brianna's parents and step parents to know that Brianna is in your thoughts as well.
Brianna slept in Aunt Faith's hotel room for about 1 1/2 hours before I got her up and back to the reception with enough time to say good night to everyone including many of my aunts and uncles and some of the family members of my new brother-in-law Josh, that came to the wedding who have given their love and support to Brianna from the start of theis journey. I think it was good for Brianna to come, not just to see her Aunt get married but also to see those people that love and support her every day even though she may not see it for her own eyes.
We headed back Saturday around 1pm and I dropped Brianna and Kaitlyn off and Jennifer's house as Kaitlyn does have a volleyball tournament tomorrow and Brianna could use the rest in her own bed. I did get a chance to talk to her earlier tonight and she didn't feel so great and did throw up so hopefully this is just a flu bug that has been going around!
I also wanted to remind those of you in the Chicago area of a fundraiser that we are holding next Saturday in Villa Park! Here are the details:
Start Time: Saturday, March 28, 2009 at 6:00pmEnd Time: Sunday, March 29, 2009 at 12:00amLocation: Palace Sports Bar and BilliardsStreet: 160 West Roosevelt RoadCity/Town: Villa Park, IL
There will be a silent auction and raffles. A $35 ticket includes a dinner from 7-8 pm, free pool all night (starting at 4pm), two drink tickets and Live Music with Detroit Danny! All proceeds from ticket, auction and raffles will go to the Brianna Sharp Medical Fund.
Hopefully anyone and everyone that can make it will come! It should be a great event! We are specifically trying to raise the $6000 needed to get a low level laser therapy machine so that Brianna can benefit from those treatments as well! Any money raised over and above that will go into the fund to help cover her medical bills, medications and supplements that she takes daily!
Thanks for checking in and thank you again for all your thoughts and prayers! Please also pray for Max, Andrew, Caleb, Carter, Kole and all the other children and their families that are fighting the very same battle Brianna is!
Grateful Dad,
Matthew
Bree
Note from Brianna's Dad Matt:
Well we arrived back from Peoria after Brianna, Kaitlyn, Gianna and I had gone to their Aunt Julie's wedding! We left Thursday after Jennifer had picked up Brianna and Kaitlyn from school and we headed out around 1:00 Thursday for the 2 hour drive to see their Grandpa and Grandma Sue and their Aunt Faith and Aunt Julie and meet their new Uncle Josh!
We had the rehearsal dinner Thursday night and Brianna and Kaitlyn were originally placed in the role of handing out programs but were quickly recruited to help their little sister Gianna down the aisle to be flower girl as we saw that Gianna would be most comfortable with them helping her. Gianna really looks up to all of her siblings but is always excited when its a day where she gets to see them.
We went to Alexander's Steakhouse where Brianna got to visit some more with her Grandpa and Grandma Sue and was her usually laughing and smiling self! Her energy level was pretty good that night until we got back to Grandpa and Grandma's house and then she was ready to take her meds and crash for the night! That first night was rough because Gianna woke up in the middle of the night but Brianna was a great big sister and was helping to get her to calm down and did a great job.
Friday we woke up and had breakfast and as her Aunts got ready for the wedding Brianna just chilled out and played with my iTouch and talked to everyone at the house. Soon it was time to get ready and both Brianna and Kaitlyn looked so nice in their dresses for the wedding! We left around 3:00 to head over to the wedding. All 3 girls fulfilled their roles perfectly and did a wonderful job.
When it was time for the wedding reception Brianna was starting to get really tired but hung in their long enough to make it through the wedding party introductions and the toast and eat a little something before she crashed for a while in Aunt Faith's room. But not before she got to meet many of Grandma Sue's friends and co-workers that have become quite big fans of Brianna and finally got a chance to meet her in person! It's always nice to meet those who have given their love and support to Brianna from day one and we appreciate all of you that tune in every time you get one of these alerts of an update! Your notes and words of encouragement not only help Brianna with her battle but also lifts our spirits as Brianna's parents and step parents to know that Brianna is in your thoughts as well.
Brianna slept in Aunt Faith's hotel room for about 1 1/2 hours before I got her up and back to the reception with enough time to say good night to everyone including many of my aunts and uncles and some of the family members of my new brother-in-law Josh, that came to the wedding who have given their love and support to Brianna from the start of theis journey. I think it was good for Brianna to come, not just to see her Aunt get married but also to see those people that love and support her every day even though she may not see it for her own eyes.
We headed back Saturday around 1pm and I dropped Brianna and Kaitlyn off and Jennifer's house as Kaitlyn does have a volleyball tournament tomorrow and Brianna could use the rest in her own bed. I did get a chance to talk to her earlier tonight and she didn't feel so great and did throw up so hopefully this is just a flu bug that has been going around!
I also wanted to remind those of you in the Chicago area of a fundraiser that we are holding next Saturday in Villa Park! Here are the details:
Start Time: Saturday, March 28, 2009 at 6:00pmEnd Time: Sunday, March 29, 2009 at 12:00amLocation: Palace Sports Bar and BilliardsStreet: 160 West Roosevelt RoadCity/Town: Villa Park, IL
There will be a silent auction and raffles. A $35 ticket includes a dinner from 7-8 pm, free pool all night (starting at 4pm), two drink tickets and Live Music with Detroit Danny! All proceeds from ticket, auction and raffles will go to the Brianna Sharp Medical Fund.
Hopefully anyone and everyone that can make it will come! It should be a great event! We are specifically trying to raise the $6000 needed to get a low level laser therapy machine so that Brianna can benefit from those treatments as well! Any money raised over and above that will go into the fund to help cover her medical bills, medications and supplements that she takes daily!
Thanks for checking in and thank you again for all your thoughts and prayers! Please also pray for Max, Andrew, Caleb, Carter, Kole and all the other children and their families that are fighting the very same battle Brianna is!
Grateful Dad,
Matthew
An Irish Prayer - March 20
I had to spend most of last week in the hospital. It was a bummer! But I feel so much better now! I got to spend a lot of time this week with my friends and family. Mom picked Kaitlyn and me up from school early to go to Peoria for my Aunt Julie's wedding. Mom got to school right at lunch time so she waited while I talked to my friends before we left. All my friends have been cheering me on while I have been sick.
Thank you everybody!
love,
Bree
Note from Mom:
I was able to spend the lunch hour time talking to Ms. Beauregard. She has Brianna in class three times each day and we are blessed to have her and the 7-1 team supporting Brianna this entire year. For the first few weeks of the school year, Brianna was participating in cross country while experiencing mild-moderate headaches. It was during this time, when we were searching for a cause of the headaches, that I sought help from Brianna's teachers. By the end of September Brianna's headaches became so severe that we knew something was wrong and needed to find an answer. Since her diagnosis this past October, Ms. Beauregard has assured me that Brianna's teachers, friends, and classmates, "hold her near and dear to their hearts." They are all part of Brianna's Brigade and have held different fundraisers to support Brianna on this difficult journey.
Brianna's smile and laugh have returned and she is back to telling us long stories that have no point or no ending...you finally have to ask her, "o.k., what is the moral of the story," or "get to the point." Most of the time she admits that there is no point!! :-) I now realize that she is happy and feeling well when she gets in the story-telling mood. Her stories may not have a point, but they do have a purpose which is to try to make you laugh or smile!!
We will have a very hectic schedule the next two weeks as Kaitlyn turns 11 on March 24th, and Brianna turns 13 on April 1st!! We have always celebrated their birthdays together, but this year we decided to celebrate their birthdays separately to allow them each a chance to be the center of attention.
We again thank you for your prayers and continued support. I included a prayer below as we once again celebrated our Irish heritage with a wonderful St. Patrick's Day party.
AN IRISH PRAYER
May God give you...For every storm, a rainbow,For every tear, a smile,For every care, a promise,And a blessing in each trial.For every problem life sends,A faithful friend to share,For every sigh, a sweet song,And an answer for each prayer.
God Bless!!
Thank you everybody!
love,
Bree
Note from Mom:
I was able to spend the lunch hour time talking to Ms. Beauregard. She has Brianna in class three times each day and we are blessed to have her and the 7-1 team supporting Brianna this entire year. For the first few weeks of the school year, Brianna was participating in cross country while experiencing mild-moderate headaches. It was during this time, when we were searching for a cause of the headaches, that I sought help from Brianna's teachers. By the end of September Brianna's headaches became so severe that we knew something was wrong and needed to find an answer. Since her diagnosis this past October, Ms. Beauregard has assured me that Brianna's teachers, friends, and classmates, "hold her near and dear to their hearts." They are all part of Brianna's Brigade and have held different fundraisers to support Brianna on this difficult journey.
Brianna's smile and laugh have returned and she is back to telling us long stories that have no point or no ending...you finally have to ask her, "o.k., what is the moral of the story," or "get to the point." Most of the time she admits that there is no point!! :-) I now realize that she is happy and feeling well when she gets in the story-telling mood. Her stories may not have a point, but they do have a purpose which is to try to make you laugh or smile!!
We will have a very hectic schedule the next two weeks as Kaitlyn turns 11 on March 24th, and Brianna turns 13 on April 1st!! We have always celebrated their birthdays together, but this year we decided to celebrate their birthdays separately to allow them each a chance to be the center of attention.
We again thank you for your prayers and continued support. I included a prayer below as we once again celebrated our Irish heritage with a wonderful St. Patrick's Day party.
AN IRISH PRAYER
May God give you...For every storm, a rainbow,For every tear, a smile,For every care, a promise,And a blessing in each trial.For every problem life sends,A faithful friend to share,For every sigh, a sweet song,And an answer for each prayer.
God Bless!!
Tuesday, March 24, 2009
Back Home and St. Baldrick's - March 16
Hi everybody. I got to come home from the hospital on Friday and I am feeling a lot better.
All the doctors said that my bad headache is just a migraine! That's a relief! So now I am just getting excited cause my Aunt Julie is getting married! In a few weeks I have to go back to St. Jude but all I can say is just tell me what to do and I'll do it. I don't really like to talk about all the medical stuff. Just fix it, that's all! St. Baldrick's was great and Uncle Dave and some other people even shaved their heads in my honor! Wow! Uncle Dave let me take the first swipe of cutting his hair off. It was fun! Maybe we can even do it again next year. I hope so.
Love,
Bree
Note from Parents (Mom Jennifer):
Wow!!! I love roller coasters, but not the one we have been riding since October!! Doctors from St.Jude, Central DuPage Hospital, Edward Hospital, primary doctors and specialists all worked together and all concurred that the tumor was not causing the headaches. What a strange experience to have everyone "jumping for joy" that Brianna is a migraine sufferer! We were dreading that particular diagnosis back in October after the CT scan showed no tumor. Her headaches continued so the next weekend we thought for sure she must be suffering horrible migraines or serious tension headaches...a tumor was not at all what we were expecting. So, we began a very scary, unpredictable and uncertain journey.We are glad to have Brianna back home and pray that she has a great week! As we still have a few weeks until our return trip to St. Jude, we will continue to pray that the "area of concern" following the February MRI, is in fact a cyst or a sign of necrosis (dying of cancer cells)Brianna has told us from the very beginning to, "Just tell me what I gotta do and I'll do it!" She doesn't want to know any details and never asks for results of tests. They even used that quote for the headline of the St. Baldrick's event where Brianna was an honoree! However, Matt and I decided to share this information with Brianna as it would without a doubt lift her spirits to know that it isn't the tumor causing the pain!! I do believe she felt instant relief and her spirit returned almost instantly!St. Baldrick's was an amazing experience!! We were not sure what to expect so we were all blown away by the wonderful people and the amount of support they put forth for pediatric cancer. At the beginning of the event we listened to a few speeches. A 14 year old survivor of a very rare form of leukemia, a 23 year old who described what it was like to lose his younger brother to testicular cancer, and a parent of a little girl who is now cancer free. I must admit during this time I wasn't sure I would make it through the event, but the inspiration I received from those people meant too much. It is our goal to have Brianna give her survivor speech one day.Uncle Dave and Uncle Jeff volunteered from our family to shave their heads in honor of Brianna. You can see the pictures I added to the gallery! Brianna had such a wonderful time that she sent me a text message asking if we could do this again next year!!We would like to thank you for your continued support and prayers as we gain such great strength from our greatly expanded community!! Whether it is through your donations, kind words, prayers, cards, etc. We feel blessed to have such support. Brianna, Max, Kole, Liam, Carter, and all the DIPG warriors are true inspiration to all of us and they remind us to not take anything for granted! We parents have the honor of raising these children sent by God! They are God's children first and he has a plan for each of them. We may not know what the future holds and we pray for our will to be one with God, we know that they have already made a difference in the lives of people far beyond what most people may accomplish in a lifetime! They have already demonstrated strength, courage, determination, and love far beyond what many people can comprehend!
God Bless!!
Brianna's Family
All the doctors said that my bad headache is just a migraine! That's a relief! So now I am just getting excited cause my Aunt Julie is getting married! In a few weeks I have to go back to St. Jude but all I can say is just tell me what to do and I'll do it. I don't really like to talk about all the medical stuff. Just fix it, that's all! St. Baldrick's was great and Uncle Dave and some other people even shaved their heads in my honor! Wow! Uncle Dave let me take the first swipe of cutting his hair off. It was fun! Maybe we can even do it again next year. I hope so.
Love,
Bree
Note from Parents (Mom Jennifer):
Wow!!! I love roller coasters, but not the one we have been riding since October!! Doctors from St.Jude, Central DuPage Hospital, Edward Hospital, primary doctors and specialists all worked together and all concurred that the tumor was not causing the headaches. What a strange experience to have everyone "jumping for joy" that Brianna is a migraine sufferer! We were dreading that particular diagnosis back in October after the CT scan showed no tumor. Her headaches continued so the next weekend we thought for sure she must be suffering horrible migraines or serious tension headaches...a tumor was not at all what we were expecting. So, we began a very scary, unpredictable and uncertain journey.We are glad to have Brianna back home and pray that she has a great week! As we still have a few weeks until our return trip to St. Jude, we will continue to pray that the "area of concern" following the February MRI, is in fact a cyst or a sign of necrosis (dying of cancer cells)Brianna has told us from the very beginning to, "Just tell me what I gotta do and I'll do it!" She doesn't want to know any details and never asks for results of tests. They even used that quote for the headline of the St. Baldrick's event where Brianna was an honoree! However, Matt and I decided to share this information with Brianna as it would without a doubt lift her spirits to know that it isn't the tumor causing the pain!! I do believe she felt instant relief and her spirit returned almost instantly!St. Baldrick's was an amazing experience!! We were not sure what to expect so we were all blown away by the wonderful people and the amount of support they put forth for pediatric cancer. At the beginning of the event we listened to a few speeches. A 14 year old survivor of a very rare form of leukemia, a 23 year old who described what it was like to lose his younger brother to testicular cancer, and a parent of a little girl who is now cancer free. I must admit during this time I wasn't sure I would make it through the event, but the inspiration I received from those people meant too much. It is our goal to have Brianna give her survivor speech one day.Uncle Dave and Uncle Jeff volunteered from our family to shave their heads in honor of Brianna. You can see the pictures I added to the gallery! Brianna had such a wonderful time that she sent me a text message asking if we could do this again next year!!We would like to thank you for your continued support and prayers as we gain such great strength from our greatly expanded community!! Whether it is through your donations, kind words, prayers, cards, etc. We feel blessed to have such support. Brianna, Max, Kole, Liam, Carter, and all the DIPG warriors are true inspiration to all of us and they remind us to not take anything for granted! We parents have the honor of raising these children sent by God! They are God's children first and he has a plan for each of them. We may not know what the future holds and we pray for our will to be one with God, we know that they have already made a difference in the lives of people far beyond what most people may accomplish in a lifetime! They have already demonstrated strength, courage, determination, and love far beyond what many people can comprehend!
God Bless!!
Brianna's Family
March 12
Note from Brianna's father Matt:
Hello everyone!
I wanted to send a note out to all of you to give you a little update on the latest with Brianna. Some of you may know that Brianna was experiencing some severe pain and we took her to the hospital. Let me give you a timeline of what occurred.
Monday morning I recieved a call from Bob letting me know that Jen was going to be taking Brianna to the ER at CDH. I got dressed and grabbed all the medical records and the previous MRI scans and headed over to CDH to get her pre-registered in the ER and Jen and Bree showed up shortly after I arrived. The scary part of these pains was that Brianna had said that the pains were nearly as bad as the pains she originally had back in October when she was diagnosed and of course we were concerned that this tumor had gone into a progression stage.
Brianna was given pain meds to help with her pain and was taken in for an MRI about 10:30 Monday morning and by 2 o'clock they had looked at the scan and told us that the tumor is still stable (they were comparing to the previous MRI we did at St. Jude on February 4th). Jennifer and I were very relieved to hear this and we were still trying to figure out where the pains were coming from! Brianna was discharged a little later on and that was the end of that day.
Fast forward to Tuesday evening. I took Gianna with me to watch Kaitlyn's band concert and Brianna was there with Jennifer as well. After the concert I began to drive home and got a call from Jen about 5 minutes later that Brianna was in excruciating pain again and that she was going to take her to Edward ER. I made a bee line for Edward and Maria had to come to Naperville to get Gianna. When we arrived Brianna was in A LOT of pain and I think that shocked Gianna to see Bree in a lot of pain and felt bad for her and even drew Bree a picture to
"make her happy again" as Gianna told me. They gave Bree some morphine for the pain and I contacted Dr. Baker at St. Jude to let him know what was going on. They had recieved my FED EX earlier in the day with Brianna's scan from Monday.
St. Jude wasn't able to view the scan until yesterday morning so we had Brianna admitted for pain management until we could hear from St. Jude about possible reasons for this pain. Jennifer spent the night on those very uncomfortable "beds" for the parents and that did a number on her back and was in pain herself.
Dr. Baker called me Wednesday morning with news that he felt that visually the tumor had shrunk and that he felt that Brianna was otherwise doing really well and that we had to find a reason for the headaches and did hint that it may be due to the cyst-like formation on the edge of the tumor (which we knew about in February). We also know that sometimes fluid leaks in a tumor cyst can be very painful. However we wouldn't be able to definitively know that is the cause until we get the next St. Jude scan on April 8th.
Then I recieved the MRI report and it actually appeared that the tumor had grown a little bit but after talking to the doctors they also reminded us that with her scans at St. Jude she is sedated and immobile. She was awake for this scan last monday so if she moved in the slightest that makes the scan a little tougher to read.
She shows no other neurological symptoms and that is a good thing. At diagnosis she did have some double vision/ blurry vision and some balance issues. She doesn't present those symptoms currently so we are grateful for that.
It appears that Brianna will probably be staying one more evening and possibly get discharged Friday. I know many if you were tuning in to hear about the St. Baldrick's event from last weekend but I am going to let Jennifer update that this weekend for you. I must say though it was a great event and Brianna had a great time!
Thanks to our spouses for handling things on the homefront! We couldn't do it without you!
As you continue to pray for Brianna please also keep Max, Kole, Andrew, Caleb and all the kids fighting this monster in your thoughts and prayers!
We can't thank you all enough!
Matt
Hello everyone!
I wanted to send a note out to all of you to give you a little update on the latest with Brianna. Some of you may know that Brianna was experiencing some severe pain and we took her to the hospital. Let me give you a timeline of what occurred.
Monday morning I recieved a call from Bob letting me know that Jen was going to be taking Brianna to the ER at CDH. I got dressed and grabbed all the medical records and the previous MRI scans and headed over to CDH to get her pre-registered in the ER and Jen and Bree showed up shortly after I arrived. The scary part of these pains was that Brianna had said that the pains were nearly as bad as the pains she originally had back in October when she was diagnosed and of course we were concerned that this tumor had gone into a progression stage.
Brianna was given pain meds to help with her pain and was taken in for an MRI about 10:30 Monday morning and by 2 o'clock they had looked at the scan and told us that the tumor is still stable (they were comparing to the previous MRI we did at St. Jude on February 4th). Jennifer and I were very relieved to hear this and we were still trying to figure out where the pains were coming from! Brianna was discharged a little later on and that was the end of that day.
Fast forward to Tuesday evening. I took Gianna with me to watch Kaitlyn's band concert and Brianna was there with Jennifer as well. After the concert I began to drive home and got a call from Jen about 5 minutes later that Brianna was in excruciating pain again and that she was going to take her to Edward ER. I made a bee line for Edward and Maria had to come to Naperville to get Gianna. When we arrived Brianna was in A LOT of pain and I think that shocked Gianna to see Bree in a lot of pain and felt bad for her and even drew Bree a picture to
"make her happy again" as Gianna told me. They gave Bree some morphine for the pain and I contacted Dr. Baker at St. Jude to let him know what was going on. They had recieved my FED EX earlier in the day with Brianna's scan from Monday.
St. Jude wasn't able to view the scan until yesterday morning so we had Brianna admitted for pain management until we could hear from St. Jude about possible reasons for this pain. Jennifer spent the night on those very uncomfortable "beds" for the parents and that did a number on her back and was in pain herself.
Dr. Baker called me Wednesday morning with news that he felt that visually the tumor had shrunk and that he felt that Brianna was otherwise doing really well and that we had to find a reason for the headaches and did hint that it may be due to the cyst-like formation on the edge of the tumor (which we knew about in February). We also know that sometimes fluid leaks in a tumor cyst can be very painful. However we wouldn't be able to definitively know that is the cause until we get the next St. Jude scan on April 8th.
Then I recieved the MRI report and it actually appeared that the tumor had grown a little bit but after talking to the doctors they also reminded us that with her scans at St. Jude she is sedated and immobile. She was awake for this scan last monday so if she moved in the slightest that makes the scan a little tougher to read.
She shows no other neurological symptoms and that is a good thing. At diagnosis she did have some double vision/ blurry vision and some balance issues. She doesn't present those symptoms currently so we are grateful for that.
It appears that Brianna will probably be staying one more evening and possibly get discharged Friday. I know many if you were tuning in to hear about the St. Baldrick's event from last weekend but I am going to let Jennifer update that this weekend for you. I must say though it was a great event and Brianna had a great time!
Thanks to our spouses for handling things on the homefront! We couldn't do it without you!
As you continue to pray for Brianna please also keep Max, Kole, Andrew, Caleb and all the kids fighting this monster in your thoughts and prayers!
We can't thank you all enough!
Matt
The Luck of the Irish - March 4
I am so excited! I fit into my jeans again!! I am so excited that my body is finally going back to normal after all the swelling from the medicine! I am so happy! And that's all for now!
Love,
Bree
Note from parents:
The swelling going away has made a huge difference in Brianna's attitude as she is so joyful every day she comes home from school! Her Irish eyes are smiling!!This month we have the luck of the Irish with us as we start off this month with the St. Baldrick's Event this Saturday, March 7. Part of the entertainment for the event will be the McNulty Irish Dancers. Brianna and Kaitlyn, along with their cousins (and believe it or not...myself...about 25 years ago when Barbara McNulty was in her very early years of teaching) were all part of the McNulty Irish Dancers. We look forward to the event so we can see Barbara McNulty after missing her for several years.Even though it has been several years since any of us have danced for McNulty, Barbara holds a special place in her heart for everyone whom she meets and teaches. She has been very generous and supportive of Brianna on this journey. Barbara McNulty returned from Ireland recently and brought back holy water from St. Bart's well. It turns out that he is the patron saint of neurological diseases! This along with the blessed St. Peregrine oil (patron saint of cancer) will be used during our daily prayers for Brianna's healing.I received a phone call from Colleen Willard (the lady we went to see in Northlake at St. John's) who was miraculously healed from an inoperable brain tumor. She lays her hands on people for healing and immediately felt a connection with Brianna. In the course of our conversation she told me about the story of a 12 year old girl whose family was mourning her death and Jesus healed her! (written in Mark) It is amazing to me that the previous night I chose to read Mark in the Bible as opposed to going through my prayer book and various prayer cards. As soon as I read that story I felt a sense of peace and fell asleep.Brianna's Aunt Georgia received an unsolicited email from Mother Nadine from the Intercessors of the Lamb in Omaha, Nebraska. The visions that were shared were very hopeful and also helped bring a little more peace. Aunt Georgia, Brianna and I will be attending a weekend retreat in April where we will see Colleen and Mother Nadine. We have a prayer network that reaches around the world!! Thank you for your continued prayers and support!My family (along with her dad Matt's family) are very Irish and Catholic and we pray that the month of March (St. Baldrick's, St. Patrick's Day, and all of the other celebrations this month) will prove that we are blessed and will be witness to a miracle healing! May the luck of the Irish and the grace of God be with us always!! We will continue to pray to St. Peregrine, St. Bart, St. Jude, St. Anthony, St. Michael, the Blessed Mother and all the angels and saints for their intercession on behalf of Brianna's healing.Brianna's 13th Birthday will be coming up on April Fool's Day!! Please pray for Brianna to receive the greatest gift of all, which is the gift of a healthy, happy life! I pray that April 1st will prove to be the rebirth of Brianna as a healthy child. We return to St. Jude April 7th-10th for more testing and another MRI. As we return on Good Friday, may we return with new life (health) with God's will, as we celebrate the Easter holiday and it's true meaning.We will also continue praying for all of our DIPG children, most recently we found out about another little boy (Carter Kettner) from Huntley, IL. He is also on www.carepages.com and you can visit his site if you are interested in sending your wishes and/or prayers. Please pray for their family as they begin the path which we started back in October.
Love,
Brianna's Mom Jennifer and family
Love,
Bree
Note from parents:
The swelling going away has made a huge difference in Brianna's attitude as she is so joyful every day she comes home from school! Her Irish eyes are smiling!!This month we have the luck of the Irish with us as we start off this month with the St. Baldrick's Event this Saturday, March 7. Part of the entertainment for the event will be the McNulty Irish Dancers. Brianna and Kaitlyn, along with their cousins (and believe it or not...myself...about 25 years ago when Barbara McNulty was in her very early years of teaching) were all part of the McNulty Irish Dancers. We look forward to the event so we can see Barbara McNulty after missing her for several years.Even though it has been several years since any of us have danced for McNulty, Barbara holds a special place in her heart for everyone whom she meets and teaches. She has been very generous and supportive of Brianna on this journey. Barbara McNulty returned from Ireland recently and brought back holy water from St. Bart's well. It turns out that he is the patron saint of neurological diseases! This along with the blessed St. Peregrine oil (patron saint of cancer) will be used during our daily prayers for Brianna's healing.I received a phone call from Colleen Willard (the lady we went to see in Northlake at St. John's) who was miraculously healed from an inoperable brain tumor. She lays her hands on people for healing and immediately felt a connection with Brianna. In the course of our conversation she told me about the story of a 12 year old girl whose family was mourning her death and Jesus healed her! (written in Mark) It is amazing to me that the previous night I chose to read Mark in the Bible as opposed to going through my prayer book and various prayer cards. As soon as I read that story I felt a sense of peace and fell asleep.Brianna's Aunt Georgia received an unsolicited email from Mother Nadine from the Intercessors of the Lamb in Omaha, Nebraska. The visions that were shared were very hopeful and also helped bring a little more peace. Aunt Georgia, Brianna and I will be attending a weekend retreat in April where we will see Colleen and Mother Nadine. We have a prayer network that reaches around the world!! Thank you for your continued prayers and support!My family (along with her dad Matt's family) are very Irish and Catholic and we pray that the month of March (St. Baldrick's, St. Patrick's Day, and all of the other celebrations this month) will prove that we are blessed and will be witness to a miracle healing! May the luck of the Irish and the grace of God be with us always!! We will continue to pray to St. Peregrine, St. Bart, St. Jude, St. Anthony, St. Michael, the Blessed Mother and all the angels and saints for their intercession on behalf of Brianna's healing.Brianna's 13th Birthday will be coming up on April Fool's Day!! Please pray for Brianna to receive the greatest gift of all, which is the gift of a healthy, happy life! I pray that April 1st will prove to be the rebirth of Brianna as a healthy child. We return to St. Jude April 7th-10th for more testing and another MRI. As we return on Good Friday, may we return with new life (health) with God's will, as we celebrate the Easter holiday and it's true meaning.We will also continue praying for all of our DIPG children, most recently we found out about another little boy (Carter Kettner) from Huntley, IL. He is also on www.carepages.com and you can visit his site if you are interested in sending your wishes and/or prayers. Please pray for their family as they begin the path which we started back in October.
Love,
Brianna's Mom Jennifer and family
Tuesday, March 3, 2009
St. Baldrick's Event - February 28
Note from Brianna's Dad:
Hello everyone! We wanted to post an update on an event that is going to have Brianna as an honored guest. We are excited for the event and hope that it raises alot of money for Pediatric cancer research!
To learn more about St. Baldrick's please visit:
http://www.stbaldricks.org/about_us/#
If you are interested in attending, volunteering, participating, or donating please click on the link ( or you may have to cut and paste the link) below and make sure it is specifically for the Naperville Department of Public Safety.The event is held Saturday, March 7thNaperville Holiday Inn (off Naperville Road prior to I-88)5-10 pm (registration begins at 5 pm)casual dress codecash barfoodentertainment (head shaving, Irish Dancers and more)silent auction and moreWe would love to see you there.....expecially if you are planning on shaving your head.
http://www.stbaldricks.org/events/event_info.php?EventKey=2009-21
Brianna is doing well and went to a birthday party last night. I haven't had a chance to talk with her today since she went to the party but I know that was very excited to be going and I am sure she had a great time!
We appreciate everyone's thoughts and prayers for Brianna as she continues her courageous fight against cancer. We are touched by everyone's concern and generosity and can't begin to thank everyone enough! Please keep in your thoughts and prayers Max, Kole, Lizzie, Andrew, Luke and All the DIPG kids fighting this battle just as courageously as Brianna is!
I leave you with a quite that I heard from an old high school friend of Jennifer and I that I thought was quote appropriate.
'The will of God will never take you where the Grace of God will not protect you'
Thank you for checking in on Brianna !
Matt - Bree's Dad
Hello everyone! We wanted to post an update on an event that is going to have Brianna as an honored guest. We are excited for the event and hope that it raises alot of money for Pediatric cancer research!
To learn more about St. Baldrick's please visit:
http://www.stbaldricks.org/about_us/#
If you are interested in attending, volunteering, participating, or donating please click on the link ( or you may have to cut and paste the link) below and make sure it is specifically for the Naperville Department of Public Safety.The event is held Saturday, March 7thNaperville Holiday Inn (off Naperville Road prior to I-88)5-10 pm (registration begins at 5 pm)casual dress codecash barfoodentertainment (head shaving, Irish Dancers and more)silent auction and moreWe would love to see you there.....expecially if you are planning on shaving your head.
http://www.stbaldricks.org/events/event_info.php?EventKey=2009-21
Brianna is doing well and went to a birthday party last night. I haven't had a chance to talk with her today since she went to the party but I know that was very excited to be going and I am sure she had a great time!
We appreciate everyone's thoughts and prayers for Brianna as she continues her courageous fight against cancer. We are touched by everyone's concern and generosity and can't begin to thank everyone enough! Please keep in your thoughts and prayers Max, Kole, Lizzie, Andrew, Luke and All the DIPG kids fighting this battle just as courageously as Brianna is!
I leave you with a quite that I heard from an old high school friend of Jennifer and I that I thought was quote appropriate.
'The will of God will never take you where the Grace of God will not protect you'
Thank you for checking in on Brianna !
Matt - Bree's Dad
A Little Bit Longer - February 22
Note from Brianna's parents:
Before I post tonight's update I would like to remind everyone that a second order for Brianna's Brigade t-shirts will be submitted the first week of March so if you are interested in purchasing and do not have an order form, please feel free to email me at (jensiemann@sbcglobal.net). I hope to receive all orders by March 1 for the second printing. Everyone who received thier shirts from the first round of orders were very pleased and we would like to thank our neighbor Chris Reihs for his help in this fundraiser!!Brianna's new theme song is "A Little Bit Longer," by the Jonas Brothers. If you listen to the lyrics you'll know why! The song was written after one of them (Joe, Nick, what's his name) was diagnosed with diabetes. Brianna, Haley, and Kaitlyn all like the Jonas Brothers and Brianna will play this song over and over singing along.Brianna and Kaitlyn had their weekend at their dad's house but it was cut short by Friday evening volleyball practice for Kaitlyn and then her first volleyball tournament of the year which lasted all of Sunday morning. Brianna shows little support for Kaitlyn's volleyball as she reminds me a million times how bored she is...and now with her illness we will definitely not leave her home alone so she have to find something to keep her entertained. No need to recommmend books as she will have no part of that!!An update on Gizmo...he has learned that our home has an upstairs!! Bob and I were both upstairs when we heard him enter our bedroom and watched him jump around wagging his tail with excitement! I went to bed and Bob went downstairs with Gizmo to watch t.v. However, Gizmo proceeded to sneak upstairs 3 more times and was sitting outside our bedroom door. Bob then decided to put Gizmo to bed in his crate only to listen to his whimpering. Bob decided to let Gizmo come upstairs to say goodnight to me shaking his head reminding me how much he "dislikes" dogs. Bob purchased two gates today to keep Gizmo contained to the family room, though when I went to tuck the girls into bed Gizmo barked incessantly and tried to find someway to squeeze through the gate.I would like to put on record (Bob will still deny) that Bob is just jealous of the fact that Gizmo doesn't give him any attention when anyone else is around and his late night t.v. buddy is no longer.Matt went to visit the Burzynski Clinic in Houston this week in order to see what they have to offer for recurrent DIPG tumors. We certainly pray for Brianna's continued healing and believe we will not need to seek other treatment options, but Matt convinced me it is better to be armed with knowledge and prepare for immediate action if it is ever needed. This is very difficult as it forces us to think about tumor progression when we would rather focus on her current treatment being successful along with prayer and God's healing power. In fact, I have not yet been able to hear about Matt's trip as I am not quite prepared for the discussion, but when we are ready we will let you know what we learned.Finally, as we continue to ask for your prayers for Brianna and all of the children battling cancer, especially our DIPG warriors who inspire us everyday with their courage and spirit!God Bless You!
Jennifer
Before I post tonight's update I would like to remind everyone that a second order for Brianna's Brigade t-shirts will be submitted the first week of March so if you are interested in purchasing and do not have an order form, please feel free to email me at (jensiemann@sbcglobal.net). I hope to receive all orders by March 1 for the second printing. Everyone who received thier shirts from the first round of orders were very pleased and we would like to thank our neighbor Chris Reihs for his help in this fundraiser!!Brianna's new theme song is "A Little Bit Longer," by the Jonas Brothers. If you listen to the lyrics you'll know why! The song was written after one of them (Joe, Nick, what's his name) was diagnosed with diabetes. Brianna, Haley, and Kaitlyn all like the Jonas Brothers and Brianna will play this song over and over singing along.Brianna and Kaitlyn had their weekend at their dad's house but it was cut short by Friday evening volleyball practice for Kaitlyn and then her first volleyball tournament of the year which lasted all of Sunday morning. Brianna shows little support for Kaitlyn's volleyball as she reminds me a million times how bored she is...and now with her illness we will definitely not leave her home alone so she have to find something to keep her entertained. No need to recommmend books as she will have no part of that!!An update on Gizmo...he has learned that our home has an upstairs!! Bob and I were both upstairs when we heard him enter our bedroom and watched him jump around wagging his tail with excitement! I went to bed and Bob went downstairs with Gizmo to watch t.v. However, Gizmo proceeded to sneak upstairs 3 more times and was sitting outside our bedroom door. Bob then decided to put Gizmo to bed in his crate only to listen to his whimpering. Bob decided to let Gizmo come upstairs to say goodnight to me shaking his head reminding me how much he "dislikes" dogs. Bob purchased two gates today to keep Gizmo contained to the family room, though when I went to tuck the girls into bed Gizmo barked incessantly and tried to find someway to squeeze through the gate.I would like to put on record (Bob will still deny) that Bob is just jealous of the fact that Gizmo doesn't give him any attention when anyone else is around and his late night t.v. buddy is no longer.Matt went to visit the Burzynski Clinic in Houston this week in order to see what they have to offer for recurrent DIPG tumors. We certainly pray for Brianna's continued healing and believe we will not need to seek other treatment options, but Matt convinced me it is better to be armed with knowledge and prepare for immediate action if it is ever needed. This is very difficult as it forces us to think about tumor progression when we would rather focus on her current treatment being successful along with prayer and God's healing power. In fact, I have not yet been able to hear about Matt's trip as I am not quite prepared for the discussion, but when we are ready we will let you know what we learned.Finally, as we continue to ask for your prayers for Brianna and all of the children battling cancer, especially our DIPG warriors who inspire us everyday with their courage and spirit!God Bless You!
Jennifer
He Can and He Will - February 19
We did have a good time at the GIG. We have pictures to prove it but some of it was still boring. I just figured out how to talk to myself on the phone - I guess I was bored. I called my cell phone from the house phone and answered my cell phone - so I'm really talking to ME. It's cool!
On Monday I woke up with headache and a sore throat. I had a headache when I went to bed too, so Mom called the doctor and they found out I have strep throat. I missed a couple of days of school and then when I knew I was going back I got all worried because I missed so much it would be hard to catch up. Last night I took Gizmo outside and slipped on some ice and hit my forehead. It ended up just being a bump over my eyebrow. This year is really hard. It sucks. I am worried that I won't pass the ISAT tests and then I won't pass 7th grade. I missed a lot of school being sick and it scares me that I might not pass, even though my mom is a teacher, I still want to pass the tests and I am afraid I won't. Well, I'll just have to try.
Love,
Bree
Note from parents (mom Jennifer):
I think teenagers are predisposed to answer boring to whatever question is asked...until you get the answer o.k. which is code for great, then if they answer cool it is code for something fun but mischievous, and if they answer awesome it was probably something illegal! I was going to return to work Monday but was awakened by Brianna at 4 am complaining of a headache and sore throat. Normal sick complaints for most parents, but before Brianna was diagnosed she would wake up in the middle of the night or early morning in pain with a severe headache and nausea. Kaitlyn then woke up not feeling well so I decided to call the doctor asap and we were able to get in right away. Kaitlyn was negative for strep but treated preventatively. When Brianna fell on the ice we were worried because she hit her head. Of course, this also puts us in a panic as she needs to prevent any head injury that might cause a hemorrage. Bob and I realized it was a bump over her eyebrow and she would be o.k. Once Brianna gets going all the world is wrong and her worries and concerns that she keeps bottled up start to come out. Brianna doesn't like school, but that is only because in her words and mine, "This year sucks!!" It doesn't matter that I'm not only her mother but also a teacher, she doesn't believe me when I try to explain things to her. She needs to hear it from her teachers/school. I am just "mom" and realize that I fall into that pre-teen to teen attitude of "you don't know anything."I have had my own struggles to deal with and am doing my best to get back to work. I am having to deal with depression/anxiety issues, but I also am suffering from pain that I have experienced off and on for many years. I will go for medical testing likely showing that nothing is wrong, but I hope to find relief soon so I can return to work.We are still committed to our faith and I even purchased a wall hanging that will remind me of what I have been saying for months but have recently been struggling with..."Faith, is not believing that God can, but knowing that He will!" I have been on this journey swaying back and forth between, "I know He can heal her, but my struggle is between hoping He will and knowing He will heal Brianna." I seem to be stuck on the Hope side and I am struggling with that so I am working hard to pray that my will is one with God's no matter what His will holds for Brianna. Though my family is holding strong and continuing to grwo spiritually, I am working extra hard to keep pace right now.Thank you for your support and continued prayers. Please continue to pray for Brianna, Max, Kole and Liam. They have more strength and courage than you can even imagine. I am amazed as well as everyone who has seen Brianna over the last couple of weeks...she is so happy, energtic, excited and her sweet smile is back!!!! Her teachers miss her whenever she is gone and I think that is because they miss her smile!!
Jennifer
On Monday I woke up with headache and a sore throat. I had a headache when I went to bed too, so Mom called the doctor and they found out I have strep throat. I missed a couple of days of school and then when I knew I was going back I got all worried because I missed so much it would be hard to catch up. Last night I took Gizmo outside and slipped on some ice and hit my forehead. It ended up just being a bump over my eyebrow. This year is really hard. It sucks. I am worried that I won't pass the ISAT tests and then I won't pass 7th grade. I missed a lot of school being sick and it scares me that I might not pass, even though my mom is a teacher, I still want to pass the tests and I am afraid I won't. Well, I'll just have to try.
Love,
Bree
Note from parents (mom Jennifer):
I think teenagers are predisposed to answer boring to whatever question is asked...until you get the answer o.k. which is code for great, then if they answer cool it is code for something fun but mischievous, and if they answer awesome it was probably something illegal! I was going to return to work Monday but was awakened by Brianna at 4 am complaining of a headache and sore throat. Normal sick complaints for most parents, but before Brianna was diagnosed she would wake up in the middle of the night or early morning in pain with a severe headache and nausea. Kaitlyn then woke up not feeling well so I decided to call the doctor asap and we were able to get in right away. Kaitlyn was negative for strep but treated preventatively. When Brianna fell on the ice we were worried because she hit her head. Of course, this also puts us in a panic as she needs to prevent any head injury that might cause a hemorrage. Bob and I realized it was a bump over her eyebrow and she would be o.k. Once Brianna gets going all the world is wrong and her worries and concerns that she keeps bottled up start to come out. Brianna doesn't like school, but that is only because in her words and mine, "This year sucks!!" It doesn't matter that I'm not only her mother but also a teacher, she doesn't believe me when I try to explain things to her. She needs to hear it from her teachers/school. I am just "mom" and realize that I fall into that pre-teen to teen attitude of "you don't know anything."I have had my own struggles to deal with and am doing my best to get back to work. I am having to deal with depression/anxiety issues, but I also am suffering from pain that I have experienced off and on for many years. I will go for medical testing likely showing that nothing is wrong, but I hope to find relief soon so I can return to work.We are still committed to our faith and I even purchased a wall hanging that will remind me of what I have been saying for months but have recently been struggling with..."Faith, is not believing that God can, but knowing that He will!" I have been on this journey swaying back and forth between, "I know He can heal her, but my struggle is between hoping He will and knowing He will heal Brianna." I seem to be stuck on the Hope side and I am struggling with that so I am working hard to pray that my will is one with God's no matter what His will holds for Brianna. Though my family is holding strong and continuing to grwo spiritually, I am working extra hard to keep pace right now.Thank you for your support and continued prayers. Please continue to pray for Brianna, Max, Kole and Liam. They have more strength and courage than you can even imagine. I am amazed as well as everyone who has seen Brianna over the last couple of weeks...she is so happy, energtic, excited and her sweet smile is back!!!! Her teachers miss her whenever she is gone and I think that is because they miss her smile!!
Jennifer
Dancing the Night Away! February 15
We went to Gregory's Dance, it was nicknamed the GIG. I thought it would be boring but Haley and my best friend Maddy went with me so it was pretty fun. Haley and I had disposable cameras so we'll see how the pictures turn out when they get developed. Then we will know for SURE if we had fun!
Last night Haley prayed the rosary with us. I think that my stepdad will pray with us tonight. It's a really special way to pray and we say extra prayers to St. Jude and St. Preegrine, antonietta Meo, St. Francis and some others too. A few people still come by to visit and they all tell me I look really good! I am almost back to normal after all that medicine made me look kind of puffy. I'm getting excited because I am going to be a real teenager on April Fool's Day. Sometimes it's hard to get people to believe that is really my birthday but it is. I was born on April 1st!
Love, Bree
Note from Parents (mom Jennifer):
Dancing the night away!? Well....not really! Brianna still thinks the GIG (Gregory's Dance) was boring, but I think she said that rather than admit she was wrong. I purchased a disposable camera for Haley and Brianna. Considering they each used up 27 exposures tells me they were not "totally bored"!! Once the film gets developed we will be able to see how much fun they had...or how bored they were!
Eric will be at a friends house so he will have to join us in praying the rosary another time. It warms my heart when the girls each take turns reading one of the mysteries. We have only introduced the rosary recently (as far as teaching them exactly how to pray the rosary) and we plan to make a habit out of it. Prayers for the seriously ill, prayer of gratitude, for healing, for deepening faith, etc. When I see their faces and how intent they are while praying the rosary and the determination to get through all of the prayers, it helps me grow in my faith because I see how deeply they believe and how they do not question anything. I am learning from them as we pray the rosary.
A few people have stopped by or seen Brianna out and about and they are all absolutely amazed at how good she looks!! They are almost speechless as she is smiling, laughing, energetic, and physically she looks like she did previously. I believe I mentioned a long time ago that she gained 30 pounds and she has lost all but 5 pounds!!! Which if you think about a 12 year old growing...that is just normal growth.
Brianna was born 1 month premature weighing in at 7lb/3oz. A very healthy, happy, normal baby. Being born 1 month early she was really good size and had no complications. Imagine trying to tell people we were in labor on April Fool's Day!! No one believed us when we tried to call and tell people I was in labor. She was born at 5:15 at night. With her 13th birthday approaching I am brainstorming a very special "teenager" party where she can be pampered. Especially, with all that she has had to endure she deserves a ery special day to be treated like a princess. I am using her approaching birthday to refocus to a positive state of mind. I will also not let Kaitlyn's birthday pass by unnoticed as she turns 11 on March 24th. They have always shared birthday parties since their special days are only 1 week apart, but I think this year they each deserve to have the spotlight on thier own very special day!!
Before I end I would like to add the the first round of t-shirts have arrived and they look AWESOME!! We are still accepting orders for Brianna's Brigade t-shirts so if you are interested or if you forgot to submit the order form before the first deadline, we are targeting the end of February or early March for round two! Please contact me at the email / phone number below for an order form.
Please continue to pray for all the DIPG warriors as their daily courage is so inspirational we are left speechless! Thank you for all of your support and please continue to pray for complete healing for these children.
God Bless!Jennifer
Last night Haley prayed the rosary with us. I think that my stepdad will pray with us tonight. It's a really special way to pray and we say extra prayers to St. Jude and St. Preegrine, antonietta Meo, St. Francis and some others too. A few people still come by to visit and they all tell me I look really good! I am almost back to normal after all that medicine made me look kind of puffy. I'm getting excited because I am going to be a real teenager on April Fool's Day. Sometimes it's hard to get people to believe that is really my birthday but it is. I was born on April 1st!
Love, Bree
Note from Parents (mom Jennifer):
Dancing the night away!? Well....not really! Brianna still thinks the GIG (Gregory's Dance) was boring, but I think she said that rather than admit she was wrong. I purchased a disposable camera for Haley and Brianna. Considering they each used up 27 exposures tells me they were not "totally bored"!! Once the film gets developed we will be able to see how much fun they had...or how bored they were!
Eric will be at a friends house so he will have to join us in praying the rosary another time. It warms my heart when the girls each take turns reading one of the mysteries. We have only introduced the rosary recently (as far as teaching them exactly how to pray the rosary) and we plan to make a habit out of it. Prayers for the seriously ill, prayer of gratitude, for healing, for deepening faith, etc. When I see their faces and how intent they are while praying the rosary and the determination to get through all of the prayers, it helps me grow in my faith because I see how deeply they believe and how they do not question anything. I am learning from them as we pray the rosary.
A few people have stopped by or seen Brianna out and about and they are all absolutely amazed at how good she looks!! They are almost speechless as she is smiling, laughing, energetic, and physically she looks like she did previously. I believe I mentioned a long time ago that she gained 30 pounds and she has lost all but 5 pounds!!! Which if you think about a 12 year old growing...that is just normal growth.
Brianna was born 1 month premature weighing in at 7lb/3oz. A very healthy, happy, normal baby. Being born 1 month early she was really good size and had no complications. Imagine trying to tell people we were in labor on April Fool's Day!! No one believed us when we tried to call and tell people I was in labor. She was born at 5:15 at night. With her 13th birthday approaching I am brainstorming a very special "teenager" party where she can be pampered. Especially, with all that she has had to endure she deserves a ery special day to be treated like a princess. I am using her approaching birthday to refocus to a positive state of mind. I will also not let Kaitlyn's birthday pass by unnoticed as she turns 11 on March 24th. They have always shared birthday parties since their special days are only 1 week apart, but I think this year they each deserve to have the spotlight on thier own very special day!!
Before I end I would like to add the the first round of t-shirts have arrived and they look AWESOME!! We are still accepting orders for Brianna's Brigade t-shirts so if you are interested or if you forgot to submit the order form before the first deadline, we are targeting the end of February or early March for round two! Please contact me at the email / phone number below for an order form.
Please continue to pray for all the DIPG warriors as their daily courage is so inspirational we are left speechless! Thank you for all of your support and please continue to pray for complete healing for these children.
God Bless!Jennifer
Subscribe to:
Posts (Atom)
