Hello everyone, this is a Maria. I wanted to share with you a letter that I wrote to Brianna. I read it during the wake in front of just the family and some close friends but I wanted to take this opportunity to share it with everyone. Jennifer, Matt and Bob will be posting their remembrances as well.
Dear Brianna,
I made you a charm bracelet. I picked out some trinkets that remind me of you.
PRINCESS – When I met your dad he always talked about how you were his princess.
FOUR LEAF CLOVER – You and Kaitlyn were in Irish Dance. You were so proud of your Irish Heritage.
HORSE – You always talked about your love for horses. I bet you are riding a beautiful white stallion right now.
CANCER AWARENESS RIBBON – I was so proud to walk the survivor lap at The Relay for Life as a fellow survivor. That is a moment I will cherish forever.
CELL PHONE – I was so excited to see the look on your face when me and your dad bought you your first cell phone.
FLIP-FLOP – I know how much you missed wearing Flip Flops when your coordination was off. I know you’ve got some on now.
PALM TREE – You were so excited to get your room done! The theme you picked was so fun. I hope you’re relaxing under a big palm tree right now.
DOG BONE – Your biggest wish was to get a dog. Little Gizmo is going to miss you so much!
CROSS – I always admired your strong Faith in God. You were an inspiration to so many people.
ANGEL – When I knew that it was only a matter of time that you would not be with us I had to start talking to Gianna about it. This is what Gianna tells everyone about where you are going……..
“Brianna is going to get wings and fly up high in the sky. She is going to live in God’s house which is called Heaven with all the other angels. She will also be with God’s son, his name is Jesus.”
I was saddened but joyful for Gianna when I had to tell her that you got your Angel wings. I told her that she is so blessed because now she can tell everyone she has an“Angel Sister”
I love you Brianna. I am going to miss you so much.
Maria
Thank you to everyone for your love and support.
Sincerely,
Maria Sharp
Proud Stepmother of Brianna and Kaitlyn Sharp
Friday, July 31, 2009
Monday, July 27, 2009
Visitiation, Funeral Mass and Luncheon
From Brianna's Family -
Thank you for your overwhelming support and sympathy. We are reading all of your messages and finding comfort in them all...God bless you all for taking our precious girl Brianna into your heart and sending unending prayers which have blessed us with more love and faith in the human spirit and compassion that reaches far and wide.
Visitation will be at Friedrich-Jones Funeral Home (Naperville, IL), on Tuesday, July 28 from 2-9 pm.
All are welcome to attend a funeral Mass at St.Raphael Catholic Church (also in Naperville) on Wednesday, July 29 at 10 AM. Interment will immediately follow at Sts. Peter & Paul Catholic Cemetary. Upon returning to St. Raphael Catholic Church there will be a luncheon beginning around noon. You are welcome to celebrate Brianna's life and view photos, videos, artwork, and stories about Brianna. You may also want to bring a photo or write a short note about a fond memory you have of Brianna. Come and Celebrate her stong finish to a very difficult race!
One of the members of Brianna's carepage made a beautiful tribute to her and you can cut and paste the web address below, into your browser bar. The address ishttp://www.angelfire.com/tn2/psyches/dedicationbrianna.html
There were so many wonderful and kind words of sympathy and support, we are just overwhelmed as our hearts overflow with love for Brianna, but also for everyone of you who found a special place in your heart for our sweet girl, Brianna. i will like to share many beautiful poems that people have shared, but I will have to do so at another time. If you haven't taken time to read through the other messages people send, they are also inspirational by their deep faith citing scripture as well as finding the most appropriate words, poems, or expressions that lift us up everyday.
We look forward to seeing you so that we may celebrate Brianna's life and share some of her never-ending, never-having a point stories....one area where she failed to "finish the race" she could never finish a story!
God Bless You and Brianna is too!
Thank you for your overwhelming support and sympathy. We are reading all of your messages and finding comfort in them all...God bless you all for taking our precious girl Brianna into your heart and sending unending prayers which have blessed us with more love and faith in the human spirit and compassion that reaches far and wide.
Visitation will be at Friedrich-Jones Funeral Home (Naperville, IL), on Tuesday, July 28 from 2-9 pm.
All are welcome to attend a funeral Mass at St.Raphael Catholic Church (also in Naperville) on Wednesday, July 29 at 10 AM. Interment will immediately follow at Sts. Peter & Paul Catholic Cemetary. Upon returning to St. Raphael Catholic Church there will be a luncheon beginning around noon. You are welcome to celebrate Brianna's life and view photos, videos, artwork, and stories about Brianna. You may also want to bring a photo or write a short note about a fond memory you have of Brianna. Come and Celebrate her stong finish to a very difficult race!
One of the members of Brianna's carepage made a beautiful tribute to her and you can cut and paste the web address below, into your browser bar. The address ishttp://www.angelfire.com/tn2/psyches/dedicationbrianna.html
There were so many wonderful and kind words of sympathy and support, we are just overwhelmed as our hearts overflow with love for Brianna, but also for everyone of you who found a special place in your heart for our sweet girl, Brianna. i will like to share many beautiful poems that people have shared, but I will have to do so at another time. If you haven't taken time to read through the other messages people send, they are also inspirational by their deep faith citing scripture as well as finding the most appropriate words, poems, or expressions that lift us up everyday.
We look forward to seeing you so that we may celebrate Brianna's life and share some of her never-ending, never-having a point stories....one area where she failed to "finish the race" she could never finish a story!
God Bless You and Brianna is too!
She Finished Strong! - July 25, 2009
"I have fought the good fight, I have finished the race, I have kept the faith." ~ 2 Timothy 4:7
Brianna passed away at 6:12 this morning. She finished the race strong….living up to the meaning of her name and her cross country motto. She was surrounded by her loving sister, parents, and step-parents.
We felt from the day of diagnosis that Brianna was here to serve a bigger purpose, especially if God chose her to bear such a heavy cross. If a child cannot live out their dreams and God chooses to call them home, we must know His plan is perfect. She always put others first and even though I told her it is o.k. to be selfish for once in her life…to let go if she wants to be out of pain, she held strong for everyone else. She held strong and allowed her family and friends to come share their love with her and she shared her love and so much more. Though she could not speak, could not move, and struggled to open her eyes for even a second, she would gather the strength to let us know how much she loved us. She wanted to bless us with a few more squeezes of the hands, a few more words, and to show us her beautiful blue eyes a few more times.
Though we don’t know all the plans He has for her, we do know she accomplished more in 13 years than most people do in a lifetime. She touched the hearts and inspired so many people, including her parents!
Because of Brianna, family relationships have healed, parents and children cherish each other like never before, and people grew in faith. Brianna would want nothing more than for people to be happy, but we hope she served a greater purpose by displaying the hope, faith and love which inspires people to seek out the little miracles and many blessings in every day. She did accomplish her primary goal in life. Especially as Matt, Maria, Bob and I were able to give her what she always wanted…peace in her family. She was not going to leave until we reconciled our relationships. Only hours after she heard it from everyone, she began to let go and she was lifted up!
We decided if she cannot live out her own dreams (hairdresser, chef, artist, marriage, kids) we would make at least one dream come true, which was to have her family together with her and at peace.Brianna is lifted up, healed in mind, body, and spirit. She is donning beautiful angel wings, and I imagine is being tugged at by two little boys who are asking her to play with them. God Bless Brianna…her Irish eyes are smiling down on us!
May the road rise to meet you.May the wind be always at your back.May the sun shine warm upon your face.May the rains fall soft upon your fields.And until we meet again,May God hold you in the hollow of His hand.
Dance as though no one is watching you,Love as though you have never loved before,Sing as though no one can hear you,Live as though heaven is on earth.
From Brianna's extended family - all of us, parents, siblings and more, opening our hearts to each other in love, as Brianna wished it to be.
Brianna passed away at 6:12 this morning. She finished the race strong….living up to the meaning of her name and her cross country motto. She was surrounded by her loving sister, parents, and step-parents.
We felt from the day of diagnosis that Brianna was here to serve a bigger purpose, especially if God chose her to bear such a heavy cross. If a child cannot live out their dreams and God chooses to call them home, we must know His plan is perfect. She always put others first and even though I told her it is o.k. to be selfish for once in her life…to let go if she wants to be out of pain, she held strong for everyone else. She held strong and allowed her family and friends to come share their love with her and she shared her love and so much more. Though she could not speak, could not move, and struggled to open her eyes for even a second, she would gather the strength to let us know how much she loved us. She wanted to bless us with a few more squeezes of the hands, a few more words, and to show us her beautiful blue eyes a few more times.
Though we don’t know all the plans He has for her, we do know she accomplished more in 13 years than most people do in a lifetime. She touched the hearts and inspired so many people, including her parents!
Because of Brianna, family relationships have healed, parents and children cherish each other like never before, and people grew in faith. Brianna would want nothing more than for people to be happy, but we hope she served a greater purpose by displaying the hope, faith and love which inspires people to seek out the little miracles and many blessings in every day. She did accomplish her primary goal in life. Especially as Matt, Maria, Bob and I were able to give her what she always wanted…peace in her family. She was not going to leave until we reconciled our relationships. Only hours after she heard it from everyone, she began to let go and she was lifted up!
We decided if she cannot live out her own dreams (hairdresser, chef, artist, marriage, kids) we would make at least one dream come true, which was to have her family together with her and at peace.Brianna is lifted up, healed in mind, body, and spirit. She is donning beautiful angel wings, and I imagine is being tugged at by two little boys who are asking her to play with them. God Bless Brianna…her Irish eyes are smiling down on us!
May the road rise to meet you.May the wind be always at your back.May the sun shine warm upon your face.May the rains fall soft upon your fields.And until we meet again,May God hold you in the hollow of His hand.
Dance as though no one is watching you,Love as though you have never loved before,Sing as though no one can hear you,Live as though heaven is on earth.
From Brianna's extended family - all of us, parents, siblings and more, opening our hearts to each other in love, as Brianna wished it to be.
Friday, July 24, 2009
Peaceful Night and Blessed Morning - July 24
From my mom:
Brianna rested comfortably last night and looks very peaceful as she lies in bed with me. This morning we were blessed with several hand squeezes (and she even moved her left hand/arm today) and she opened both of her eyes widely to say good morning. Her lips were dry so I put moisturizer on her lips and she opened them as if she was relieved. I was especially blessed with her saying, "Mom" very clearly. Her breathing, though staggered, is remaining the same and the congestion is under control.
She is a fighter! Definitely lives up to her name, for sure...STRONG, virtuous, noble. She is cuddling HOPE bear, her comfort item from when she was a baby. How did we decide on the perfect name and how did she happen to cling to a praying teddy bear? I am beginning to see examples of how God's plan is perfect...some may say coincidence, but on our journey there have been too many to "coincidences" to believe that is all that is happening.
Trust in Him, Believe in Him, and be comforted by Him.Just as children view their parents. We are all God's children first and are blessed with the gifts of our precious children. I read this next quote in a book one day and have thought of it everyday since...."If I could sit on a porch and have a conversation with God, I would thank Him for lending you to me." Brianna is God's child first and if He chooses to call her home, He is the only person who loves her more than I...in that I find comfort and peace.
Praying for peace and comfort today, for my hero!
Right now she is really starting to move her arms and her eyes are open...Bye
Brianna rested comfortably last night and looks very peaceful as she lies in bed with me. This morning we were blessed with several hand squeezes (and she even moved her left hand/arm today) and she opened both of her eyes widely to say good morning. Her lips were dry so I put moisturizer on her lips and she opened them as if she was relieved. I was especially blessed with her saying, "Mom" very clearly. Her breathing, though staggered, is remaining the same and the congestion is under control.
She is a fighter! Definitely lives up to her name, for sure...STRONG, virtuous, noble. She is cuddling HOPE bear, her comfort item from when she was a baby. How did we decide on the perfect name and how did she happen to cling to a praying teddy bear? I am beginning to see examples of how God's plan is perfect...some may say coincidence, but on our journey there have been too many to "coincidences" to believe that is all that is happening.
Trust in Him, Believe in Him, and be comforted by Him.Just as children view their parents. We are all God's children first and are blessed with the gifts of our precious children. I read this next quote in a book one day and have thought of it everyday since...."If I could sit on a porch and have a conversation with God, I would thank Him for lending you to me." Brianna is God's child first and if He chooses to call her home, He is the only person who loves her more than I...in that I find comfort and peace.
Praying for peace and comfort today, for my hero!
Right now she is really starting to move her arms and her eyes are open...Bye
Holding Strong! - July 23
From mom Jennifer:
Nurse Jane arrived and was able to get Brianna feeling better and now appears to be resting comfortably. She was running a high fever and vomited twice. We cooled her down with cold towels and her morphine, ativan (anxiety), and robinal (congestion); then her breathing slowed down and she went back to her staggered breaths. Wonderful Maria came to help Jane give her a bath and change her bedding...Kaitlyn is showing unbelievable compassion and is gaining valuable nursing experience.
Brianna had family visiting her all day long!! As you already know, she has a huge family with both Matt and I being remarried with supportive extended families....
She opened her eyes a few times, moved her right hand a few times, and also made a few sounds all of which we believe shows she is hearing everything we are saying. She is holding on strong as everyone floods her with kisses and showers her with their love.
Nurses Jane and Robin spent the entire day helping us make 3D hand sculptures of each of us holding Brianna's hand. Bob and I made Eric and Haley's last night and for our first time they turned out...Robin is the expert so we are looking forward to seeing how the 7 others turn out! Brianna has perfect hands, fingers, nails...at St. Jude she received compliments every day on her nails because they are so beautiful. Thank you Jane and Robin for spending the day with us and taking the time to make such special gifts for each of us.
Thank you for all of your messages. I am taking the time to read your notes as it has been our source of strength to now we have so many people who love and pray for Brianna. Many of you have praised us for instilling such a deep faith in Brianna. We can take no credit as we have learned everything from her.
When I was a single mom with two toddlers, people kept telling me if you take them to church they will get used to it and will learn to behave. They were always so naughty in church. I would be kneeling for communion and they would be hitting, biting, pulling each other's hair, and kicking each other. I would leave church in tears.
I spent most of the mass every week begging God to give me the strength to get out of there without incident. After the girls realized I was not going to give up, they did in fact learn to behave in church. We started out sitting in the last pew and as they slowly learned to behave we would move up a few rows. We made it to the sixth pew and decided that was close enough. Who knew at the time Bob's parents and his brother's family sat two pews behind us! Brianna has been the only one of our kids who never complains about going to church...now they all accept it and appreciate it!!
I am sleeping with Brianna tonight and will continue to pray. I wanted to share the story with you so you all know Brianna has taught me a lot more than I have taught her.
She is going to finish strong!!
Nurse Jane arrived and was able to get Brianna feeling better and now appears to be resting comfortably. She was running a high fever and vomited twice. We cooled her down with cold towels and her morphine, ativan (anxiety), and robinal (congestion); then her breathing slowed down and she went back to her staggered breaths. Wonderful Maria came to help Jane give her a bath and change her bedding...Kaitlyn is showing unbelievable compassion and is gaining valuable nursing experience.
Brianna had family visiting her all day long!! As you already know, she has a huge family with both Matt and I being remarried with supportive extended families....
She opened her eyes a few times, moved her right hand a few times, and also made a few sounds all of which we believe shows she is hearing everything we are saying. She is holding on strong as everyone floods her with kisses and showers her with their love.
Nurses Jane and Robin spent the entire day helping us make 3D hand sculptures of each of us holding Brianna's hand. Bob and I made Eric and Haley's last night and for our first time they turned out...Robin is the expert so we are looking forward to seeing how the 7 others turn out! Brianna has perfect hands, fingers, nails...at St. Jude she received compliments every day on her nails because they are so beautiful. Thank you Jane and Robin for spending the day with us and taking the time to make such special gifts for each of us.
Thank you for all of your messages. I am taking the time to read your notes as it has been our source of strength to now we have so many people who love and pray for Brianna. Many of you have praised us for instilling such a deep faith in Brianna. We can take no credit as we have learned everything from her.
When I was a single mom with two toddlers, people kept telling me if you take them to church they will get used to it and will learn to behave. They were always so naughty in church. I would be kneeling for communion and they would be hitting, biting, pulling each other's hair, and kicking each other. I would leave church in tears.
I spent most of the mass every week begging God to give me the strength to get out of there without incident. After the girls realized I was not going to give up, they did in fact learn to behave in church. We started out sitting in the last pew and as they slowly learned to behave we would move up a few rows. We made it to the sixth pew and decided that was close enough. Who knew at the time Bob's parents and his brother's family sat two pews behind us! Brianna has been the only one of our kids who never complains about going to church...now they all accept it and appreciate it!!
I am sleeping with Brianna tonight and will continue to pray. I wanted to share the story with you so you all know Brianna has taught me a lot more than I have taught her.
She is going to finish strong!!
Thursday, July 23, 2009
Struggling
From my Family:
Brianna's condition has changed. We will do our best to keep you informed, but know that we are comforting her best we can at this time. Nurse Jane arrived and we are talking and sitting with her. She is very hot and is vomiting. Her breathing changed last night and this morning she is non-responsive. She is fighting a good fight, but we don't know how much longer. She seems determined to "Finish Strong", living by her cross country motto.
Please pray for her to be comfortable and pain free, and that she may feel God's loving arms around her!
Love, Jen & Bob (Eric, Haley, & Kaitlyn), Matt & Maria (Zachary, Madison, & Gianna)
Brianna's condition has changed. We will do our best to keep you informed, but know that we are comforting her best we can at this time. Nurse Jane arrived and we are talking and sitting with her. She is very hot and is vomiting. Her breathing changed last night and this morning she is non-responsive. She is fighting a good fight, but we don't know how much longer. She seems determined to "Finish Strong", living by her cross country motto.
Please pray for her to be comfortable and pain free, and that she may feel God's loving arms around her!
Love, Jen & Bob (Eric, Haley, & Kaitlyn), Matt & Maria (Zachary, Madison, & Gianna)
Gizmo Did It...Are You Kidding Me? - July22
From my mom Jennifer:
O.K. I mentioned yesterday that I accidentally sliced Brianna’s morphine line when I adjusted her bed railing. Well, today while nurses Jane and Robin were tending to Brianna it happened again. BUT, it wasn’t me…IT WAS GIZMO!!! He chews the clamp on the line and it cuts it in half. Jane came back tonight and rigged her morphine line so Gizmo can't get to it under the bed! Don’t worry though, Bob suggests we enroll him in a twelve step program :o) (You have to understand Bob’s sense of humor…no offense.) The pharmacy didn’t believe Jane when she called to tell them we needed another line…she said if she didn’t witness it herself she would have thought Bob was just trying to blame it on the dog! Remember, Bob claims to hate dogs…but if you sneak downstairs late at night he is cuddling the dog and feeding him snacks. Yeah, after telling everyone else not to feed the dog “people” food he goes ahead and does it when no one is looking! The pharmacy decided to draw a picture of a dog bone on the delivery bag...Ha Ha, very funny!!
Brianna is about the same nothing much changed. She slept almost the entire day, had two bites of applesauce, and nothing to drink. It appears her body is shutting down, but things are very unpredictable as we have followed many families and every experience is a little different. We pray that she remains comfortable and peaceful. She told me her head hurt this morning so I gave her an extra dose of morphine. She spoke very few words and the only ones I understood all day were, "I wish I could talk!"
I wanted to dedicate this update to the great-grandparents as they have such a special place in our hearts. Grandparents are o.k. (just kidding!), but GREAT GRANDPARENTS ARE THE BEST!!! You can see the words taken right from the dictionary! I am just a guardian…I have a long way to go before I earn any level of “importance or distinction” in the field of parenting :o)
Great: a person who has achieved importance or distinction in a field (i.e. parenting)Grand: magnificent, splendid, first-rate, very good, noble, revered, of great importance or distinctionParent: A father or mother; protector or guardian
Great grandma was diagnosed with lung cancer before Brianna’s diagnosis and they were each undergoing 6 week radiation treatments. Brianna worries more about great grandma than herself. She wanted to call them the other day so I dialed the phone, held it to her ear, and listened to her say, “I love you so much!” It is very difficult to understand Brianna’s speech, but somehow great grandpa understood. I learned today that great grandma has a new mass and the oncologist labeled it stage 4 lung cancer. Brianna would be heartbroken if she was aware of the news.
Brianna is blessed with several great-grandparents she has been able to spend time with: Marjorie & John, Ruth, Margaret, and Shirley. My family was always big on taking pictures of “the four generations.” The natural order of things is not to have the youngest generation leave first. However, maybe it’s the reason why some children are chosen to leave us and become angels? Grandparents & great grandparents need children to love and spoil in heaven! You can only play Bingo and Bridge for so long, and though some may deny it, fishing and golf becomes dull as well! Isn’t life better when you hear a child smile and laugh or watch them play? I don’t imagine people being excited to get to heaven without the smiles and laughter of children.
We have been blessed to have our entire extended family live near us our entire lives. We are what you call, “Naper-villagers” because we were born and raised in Naperville and have lived through all of the growth and change. People “new” to Naperville might be referred as, “Naper-villians” even though they may have lived here for 10-15+ years; because they may not know that the Starbucks downtown used to be a liquor store or that the Ann Taylor & Eddie Bauer used to be Cee-Bee’s grocery store. Seeing the community grow and develop has not changed its small town roots and feel. A city of 150,000 people and everyone still pulls together to help in a time of need. It has happened many times and you might have read about it in yesterday’s Naperville Sun as the Lacewell’s subdivision, then extended parts of Naperville pulled together to help them on their journey. They also took us on and are continuing to support us on our journey as well. Whether it’s neighbors, friends, schools, churches, police, fire, or Mayor Pradel, we have a support system that extends far and wide…it goes way beyond Naperville and we thank you all for continuing to encourage and support us while we enjoy our time with Brianna and continue on this tough road!
We would like to extend our deepest sympathy as CALEB SPADY passed away yesterday morning while his mother Kim was in surgery. She had to undergo another surgery due to a complication from her previous surgery for colon cancer. You might remember me asking for prayers for this family not too long ago. Caleb’s dad, Ken and his three brothers need to be lifted up in prayer. Please pray for Kim to have a speedy recovery. There are no words to describe what this family is going through. It is unbelievable how many families have lost children to DIPG in the past several weeks!! When will there ever be progress? As another parent put it, “Heaven gets sweeter every day!”
God Bless!!
O.K. I mentioned yesterday that I accidentally sliced Brianna’s morphine line when I adjusted her bed railing. Well, today while nurses Jane and Robin were tending to Brianna it happened again. BUT, it wasn’t me…IT WAS GIZMO!!! He chews the clamp on the line and it cuts it in half. Jane came back tonight and rigged her morphine line so Gizmo can't get to it under the bed! Don’t worry though, Bob suggests we enroll him in a twelve step program :o) (You have to understand Bob’s sense of humor…no offense.) The pharmacy didn’t believe Jane when she called to tell them we needed another line…she said if she didn’t witness it herself she would have thought Bob was just trying to blame it on the dog! Remember, Bob claims to hate dogs…but if you sneak downstairs late at night he is cuddling the dog and feeding him snacks. Yeah, after telling everyone else not to feed the dog “people” food he goes ahead and does it when no one is looking! The pharmacy decided to draw a picture of a dog bone on the delivery bag...Ha Ha, very funny!!
Brianna is about the same nothing much changed. She slept almost the entire day, had two bites of applesauce, and nothing to drink. It appears her body is shutting down, but things are very unpredictable as we have followed many families and every experience is a little different. We pray that she remains comfortable and peaceful. She told me her head hurt this morning so I gave her an extra dose of morphine. She spoke very few words and the only ones I understood all day were, "I wish I could talk!"
I wanted to dedicate this update to the great-grandparents as they have such a special place in our hearts. Grandparents are o.k. (just kidding!), but GREAT GRANDPARENTS ARE THE BEST!!! You can see the words taken right from the dictionary! I am just a guardian…I have a long way to go before I earn any level of “importance or distinction” in the field of parenting :o)
Great: a person who has achieved importance or distinction in a field (i.e. parenting)Grand: magnificent, splendid, first-rate, very good, noble, revered, of great importance or distinctionParent: A father or mother; protector or guardian
Great grandma was diagnosed with lung cancer before Brianna’s diagnosis and they were each undergoing 6 week radiation treatments. Brianna worries more about great grandma than herself. She wanted to call them the other day so I dialed the phone, held it to her ear, and listened to her say, “I love you so much!” It is very difficult to understand Brianna’s speech, but somehow great grandpa understood. I learned today that great grandma has a new mass and the oncologist labeled it stage 4 lung cancer. Brianna would be heartbroken if she was aware of the news.
Brianna is blessed with several great-grandparents she has been able to spend time with: Marjorie & John, Ruth, Margaret, and Shirley. My family was always big on taking pictures of “the four generations.” The natural order of things is not to have the youngest generation leave first. However, maybe it’s the reason why some children are chosen to leave us and become angels? Grandparents & great grandparents need children to love and spoil in heaven! You can only play Bingo and Bridge for so long, and though some may deny it, fishing and golf becomes dull as well! Isn’t life better when you hear a child smile and laugh or watch them play? I don’t imagine people being excited to get to heaven without the smiles and laughter of children.
We have been blessed to have our entire extended family live near us our entire lives. We are what you call, “Naper-villagers” because we were born and raised in Naperville and have lived through all of the growth and change. People “new” to Naperville might be referred as, “Naper-villians” even though they may have lived here for 10-15+ years; because they may not know that the Starbucks downtown used to be a liquor store or that the Ann Taylor & Eddie Bauer used to be Cee-Bee’s grocery store. Seeing the community grow and develop has not changed its small town roots and feel. A city of 150,000 people and everyone still pulls together to help in a time of need. It has happened many times and you might have read about it in yesterday’s Naperville Sun as the Lacewell’s subdivision, then extended parts of Naperville pulled together to help them on their journey. They also took us on and are continuing to support us on our journey as well. Whether it’s neighbors, friends, schools, churches, police, fire, or Mayor Pradel, we have a support system that extends far and wide…it goes way beyond Naperville and we thank you all for continuing to encourage and support us while we enjoy our time with Brianna and continue on this tough road!
We would like to extend our deepest sympathy as CALEB SPADY passed away yesterday morning while his mother Kim was in surgery. She had to undergo another surgery due to a complication from her previous surgery for colon cancer. You might remember me asking for prayers for this family not too long ago. Caleb’s dad, Ken and his three brothers need to be lifted up in prayer. Please pray for Kim to have a speedy recovery. There are no words to describe what this family is going through. It is unbelievable how many families have lost children to DIPG in the past several weeks!! When will there ever be progress? As another parent put it, “Heaven gets sweeter every day!”
God Bless!!
Wednesday, July 22, 2009
"Whatever" & "Amen" - July 21
From my mom Jennifer:
Today we had a visit from Aunt Georgia, Grandma Siemann, and Aunt Amy (who brought a wonderful Whole Foods lunch over)and cousins Kayla and Colleen. Brianna was barely awake almost the entire time and we understood very few words, but we were able to get her request for Macaroni and Cheese, and nurses Jane and Robin got a "Whatever!" The only other word we understood was "Amen" as she received communion.
I called nurse Jane this morning as we realized the line to her morphine pump was split in half. I think the bedrail cut the line when we put it up or down. I noticed blood coming back down her two lines. The nurses had to get her hooked back up and checked her vitals. Her blood pressure was down 96/60 and her heart rate was up. Her respirations are about 6-8 per minute. Yesterday her respirations were 16-18 and pretty regular, but today she seems to be back to taking 3 breaths, nothing for awhile, then 3 more breaths.
I found several pieces of Brianna's preschool and elementary school work. It is so interesting that kids she went to school with saw her the same way we do. We told everyone that Brianna is the one who wanted to tell stories to try to make you laugh, but she just wasn't good at it. It wasn't until diagnosis when she developed a quick wit and was good at throwing zingers.
Here is a quote from her 4th grade caring book. Every student in the class had to write a note to each and every other student in order to make keepsae booklet. One student wrote, "Brianna is a nice person. Sometimes she makes me laugh but doesn't. She is also a great team player." Lots of other notes about her creative/artistic abilities, how she is so nice and treats everyone with respect, and never wanting to leave anyone out or to get hurt feelings.
It is wonderful to have found all of her old school work. Kaitlyn and I had a great time sharing and searching for Brianna's art projects, journals, and notes.
We had a good day today and Brianna is resting comfortably. She has not shown she is in any pain and looks quite peaceful most of the time. It seems we have the pain under control and she ate more today that she did yesterday.
Brianna's dad Matt will likely visit again tonight at 8 pm. Kaitlyn is sleeping over at her cousins house. We are hoping and praying for an uneventful night! I will end with the prayer we've said ever since she could kneel at her bedside. I asked her not too long ago if she is praying before bed and she said yes. I tested her to see if she remembered our prayer and she said I still say that every night too!
Now I lay me down to sleep
I pray the Lord my soul to keep
His angels guard me through the night
and wake me with the morning light.Amen
From Brianna's mom Jennifer and all her loving family
Today we had a visit from Aunt Georgia, Grandma Siemann, and Aunt Amy (who brought a wonderful Whole Foods lunch over)and cousins Kayla and Colleen. Brianna was barely awake almost the entire time and we understood very few words, but we were able to get her request for Macaroni and Cheese, and nurses Jane and Robin got a "Whatever!" The only other word we understood was "Amen" as she received communion.
I called nurse Jane this morning as we realized the line to her morphine pump was split in half. I think the bedrail cut the line when we put it up or down. I noticed blood coming back down her two lines. The nurses had to get her hooked back up and checked her vitals. Her blood pressure was down 96/60 and her heart rate was up. Her respirations are about 6-8 per minute. Yesterday her respirations were 16-18 and pretty regular, but today she seems to be back to taking 3 breaths, nothing for awhile, then 3 more breaths.
I found several pieces of Brianna's preschool and elementary school work. It is so interesting that kids she went to school with saw her the same way we do. We told everyone that Brianna is the one who wanted to tell stories to try to make you laugh, but she just wasn't good at it. It wasn't until diagnosis when she developed a quick wit and was good at throwing zingers.
Here is a quote from her 4th grade caring book. Every student in the class had to write a note to each and every other student in order to make keepsae booklet. One student wrote, "Brianna is a nice person. Sometimes she makes me laugh but doesn't. She is also a great team player." Lots of other notes about her creative/artistic abilities, how she is so nice and treats everyone with respect, and never wanting to leave anyone out or to get hurt feelings.
It is wonderful to have found all of her old school work. Kaitlyn and I had a great time sharing and searching for Brianna's art projects, journals, and notes.
We had a good day today and Brianna is resting comfortably. She has not shown she is in any pain and looks quite peaceful most of the time. It seems we have the pain under control and she ate more today that she did yesterday.
Brianna's dad Matt will likely visit again tonight at 8 pm. Kaitlyn is sleeping over at her cousins house. We are hoping and praying for an uneventful night! I will end with the prayer we've said ever since she could kneel at her bedside. I asked her not too long ago if she is praying before bed and she said yes. I tested her to see if she remembered our prayer and she said I still say that every night too!
Now I lay me down to sleep
I pray the Lord my soul to keep
His angels guard me through the night
and wake me with the morning light.Amen
From Brianna's mom Jennifer and all her loving family
Thursday, July 16, 2009
Drastic Changes in 2 Days - July 15
Update from Brianna's mom Jennifer:
I have a sixth sense that only a mother has...mother's intuition. Through this entire journey, whenever something bad happens or we take a turn for the worse, I suffer insomnia the night before as if I know something is going to happen. I should have known last night's insomnia was a sign to tell Bob NOT to go on his business trip. He is currently trying to get a flight home from Denver tonight. He didn't really want to go, but I told him it would be o.k.
Brianna has been sleeping since 2 PM yesterday afternoon with only occassional periods where she is awake. Awake is a relative term, as we barely understand what she is saying and she is not asking for food anymore. Trying to give her medication in pill form is a challenge as she fights you tooth and nail and she even bit my finger today. She either spits it out or chews the medicine and doesn't drink from the straw anymore. Instead she bites down on it and tries to pull it out of the cup. Nurse Jane is starting an IV since we may need to use it very soon.
Her breathing has changed in the past few days. She will takes 3 breaths then nothing, then 3 breaths. You can drive yourself crazy just watching and waiting to see her take the next three breaths. She is very upset and confused. Last night she said she doesn't want to die. I had to have a long discussion with her to tell her it's o.k. and I talked about Max. I said he might need her one day to help build a million lego sets! I told her there would be a lot of other kids and she can help Jesus take care of all the sick kids, because all she wants is for no one else to suffer. She wants the tumor gone!!
Patience is a virtue, and we are definitely being tested by Brianna “Waaaiit!” “Not Yet!” “5 more minutes!” “Hold On!” No matter what we are asking her to do we get these responses numerous times and she really tries our patience…especially when we try to give her medicine. What should take 1 minute can take up to 10 minutes or more! Based on this information our day today was "Good" (Remember Good is our baseline, there are no bad days.)
Just Monday Grandma & Grandpa Sharp visited and Aunt Julie and Uncle Josh are still here. Brianna was very sleepy and wasn’t making much sense, but we learned that Uncle Josh does NOT have cooties! Whew! I felt bad that Brianna was sleeping the entire visit, but just when they were going to leave she woke up to say hello and give some hugs…but she made us all laugh incredibly hard because she made several shocking statements that we thought were out of her character, but then that’s typical with her confusion lately. Imagine a group of adults hearing certain statements and thinking, “wow,” and standing around somewhat sober faced only for Brianna, at just the right moment say, “I’m kidding” and then smile. Then we would give a sigh of relief and break into laughter. She did it over and over again. I need to preface the next statement because we certainly do not mean any disrespect for disabled/handicapped individuals and Brianna would be the most sensitive to this group. She hugged Grandpa Sharp and told him she loved him and he was special. She then started pointing to each of us saying, “You’re special, you’re special, you’re special.” However she got to Aunt Julie said “You’re special ed.” I can’t even remember all of the other jokes, but it was a great way to end the visit with the family.
Karyn came to give Brianna a haircut (trim). Karyn is one of my closest friends and Brianna and Kaitlyn were flower girls in her wedding. Brianna told Karyn she wants highlights in her hair. Karyn asked her what color and she said one, then two, then kept listing different colors. Karyn said you may not want all of those colors because you’ll look like a bag of skittles. Brianna gave one of her belly laughs and it was an AWESOME DAY. Brianna’s hair is three different lengths. From the radiation at St. Jude the bald spots have over an inch of growth and it’s coming in curly just like when she was little. It took almost 2 years for her to get hair, but once it came in she had beautiful blonde curls, and we loved when it was humid out! Now, she hates her hair and wants it straight. Brianna spends most of her waking hours, which are becoming fewer, running her fingers through her hair…over & over & over & over….she ends up pulling out some of her hair when she does this, but it seems to be a comfort to her. It’s a futile effort to try to do anything with her hair because a minute later she is pulling it out.
Now within a couple of days I am barely able to get her to open her eyes and there are fewer hugs. I can't even describe to you how horrilble it feels to have to feed and diaper your 13 year old. She is aware that she is having accidents and is terribly upset. There are no words to describe what it is like to watch your teen regress back to infancy as you slowly lose them to a horrible cancer.
Brianna keeps saying she wants to go home. For a long time I was telling her we are home, assuming she is talking about our house. Though she just said yesterday she doesn't want to die, I am hoping those words have new meaning so she can go home with Jesus, be comforted by Mary our Blessed Mother, and behold the face of God.
Thank you for all of your prayers and unending support. Thank you to our "Naperville Friends" who delivered the awesome basket of gifts and cards. I will be reading those cards to Brianna so she knows how much she is loved. I am at a loss for words when I see how much love there is for our Brianna. Please pray for God's will to be done and for Brianna to find peace and comfort in the days ahead.
I have a sixth sense that only a mother has...mother's intuition. Through this entire journey, whenever something bad happens or we take a turn for the worse, I suffer insomnia the night before as if I know something is going to happen. I should have known last night's insomnia was a sign to tell Bob NOT to go on his business trip. He is currently trying to get a flight home from Denver tonight. He didn't really want to go, but I told him it would be o.k.
Brianna has been sleeping since 2 PM yesterday afternoon with only occassional periods where she is awake. Awake is a relative term, as we barely understand what she is saying and she is not asking for food anymore. Trying to give her medication in pill form is a challenge as she fights you tooth and nail and she even bit my finger today. She either spits it out or chews the medicine and doesn't drink from the straw anymore. Instead she bites down on it and tries to pull it out of the cup. Nurse Jane is starting an IV since we may need to use it very soon.
Her breathing has changed in the past few days. She will takes 3 breaths then nothing, then 3 breaths. You can drive yourself crazy just watching and waiting to see her take the next three breaths. She is very upset and confused. Last night she said she doesn't want to die. I had to have a long discussion with her to tell her it's o.k. and I talked about Max. I said he might need her one day to help build a million lego sets! I told her there would be a lot of other kids and she can help Jesus take care of all the sick kids, because all she wants is for no one else to suffer. She wants the tumor gone!!
Patience is a virtue, and we are definitely being tested by Brianna “Waaaiit!” “Not Yet!” “5 more minutes!” “Hold On!” No matter what we are asking her to do we get these responses numerous times and she really tries our patience…especially when we try to give her medicine. What should take 1 minute can take up to 10 minutes or more! Based on this information our day today was "Good" (Remember Good is our baseline, there are no bad days.)
Just Monday Grandma & Grandpa Sharp visited and Aunt Julie and Uncle Josh are still here. Brianna was very sleepy and wasn’t making much sense, but we learned that Uncle Josh does NOT have cooties! Whew! I felt bad that Brianna was sleeping the entire visit, but just when they were going to leave she woke up to say hello and give some hugs…but she made us all laugh incredibly hard because she made several shocking statements that we thought were out of her character, but then that’s typical with her confusion lately. Imagine a group of adults hearing certain statements and thinking, “wow,” and standing around somewhat sober faced only for Brianna, at just the right moment say, “I’m kidding” and then smile. Then we would give a sigh of relief and break into laughter. She did it over and over again. I need to preface the next statement because we certainly do not mean any disrespect for disabled/handicapped individuals and Brianna would be the most sensitive to this group. She hugged Grandpa Sharp and told him she loved him and he was special. She then started pointing to each of us saying, “You’re special, you’re special, you’re special.” However she got to Aunt Julie said “You’re special ed.” I can’t even remember all of the other jokes, but it was a great way to end the visit with the family.
Karyn came to give Brianna a haircut (trim). Karyn is one of my closest friends and Brianna and Kaitlyn were flower girls in her wedding. Brianna told Karyn she wants highlights in her hair. Karyn asked her what color and she said one, then two, then kept listing different colors. Karyn said you may not want all of those colors because you’ll look like a bag of skittles. Brianna gave one of her belly laughs and it was an AWESOME DAY. Brianna’s hair is three different lengths. From the radiation at St. Jude the bald spots have over an inch of growth and it’s coming in curly just like when she was little. It took almost 2 years for her to get hair, but once it came in she had beautiful blonde curls, and we loved when it was humid out! Now, she hates her hair and wants it straight. Brianna spends most of her waking hours, which are becoming fewer, running her fingers through her hair…over & over & over & over….she ends up pulling out some of her hair when she does this, but it seems to be a comfort to her. It’s a futile effort to try to do anything with her hair because a minute later she is pulling it out.
Now within a couple of days I am barely able to get her to open her eyes and there are fewer hugs. I can't even describe to you how horrilble it feels to have to feed and diaper your 13 year old. She is aware that she is having accidents and is terribly upset. There are no words to describe what it is like to watch your teen regress back to infancy as you slowly lose them to a horrible cancer.
Brianna keeps saying she wants to go home. For a long time I was telling her we are home, assuming she is talking about our house. Though she just said yesterday she doesn't want to die, I am hoping those words have new meaning so she can go home with Jesus, be comforted by Mary our Blessed Mother, and behold the face of God.
Thank you for all of your prayers and unending support. Thank you to our "Naperville Friends" who delivered the awesome basket of gifts and cards. I will be reading those cards to Brianna so she knows how much she is loved. I am at a loss for words when I see how much love there is for our Brianna. Please pray for God's will to be done and for Brianna to find peace and comfort in the days ahead.
Monday, July 13, 2009
Kaitlyn is My Superhero - July 12
From Brianna's mom Jennifer:
While getting Brianna seated at the dinner table Saturday night, Brianna was insistent that Kaitlyn come over to her because she was Brianna’s superhero. She gave Kaitlyn a big hug and whispered in her ear. I asked Kaitlyn to immediately write down what Brianna said. Brianna said, “I love you so much and you’re my best friend!” (there was more, but Kaitlyn forgot the rest…that was all she probably needed to hear) Regardless, Kaitlyn walked back to her seat and said, “Finally, I get the appreciation I deserve!” I am sure Brianna is Kaitlyn’s superhero as well, but she just hasn’t said it aloud yet. In recent days, especially since Max’s passing, Kaitlyn has been a HUGE help and is constantly watching out for Brianna. She has been absolutely wonderful and amazing!!
Grandma Close & Great Grandma visited today. Great Grandma cries just thinking about Brianna, but she made it through a long visit without crying. Great Grandma is struggling with lung cancer and Brianna has spent a lot of time worrying about her. Brianna wanted to call Great Grandma & Great Grandpa the other day and she told them how much she loves them. Brianna told me weeks ago that God told her to be close to Great Grandma & Grandpa and she continually talked about visiting them, so she was excited to see Great Grandma!!
The past two days Brianna has become less aware of her surroundings and has not eaten nearly the amount of food as usual. She might also have a little relief because her belly is not so bloated. Matt came by today and brought orange chicken from Panda Express…she didn’t show any excitement at all.
Kaitlyn and I have been sorting through all of Brianna’s notebooks/sketchbooks. WOW!! There is a ton of artwork and journal entries. The majority of which has only been completed since early May. For the past three weeks she has not been able to write or draw anything but scribbles. Most of the drawings are really cute and happy. She has many, many pages where she describes her feelings for us. We filled one binder already and need 2-3 more in order to have a place for all of her other work. We shared the first binder with Brianna today and she was quite impressed with some of her artwork! :o) She doesn’t realize it’s her work, so we looked at each other and smiled.
I really don’t like ending an update on a sad note, but another child has earned her angel wings. Ravyn Finch, the little girls we met at St. Jude passed away, but she was a very strong warrior who put up a very strong fight. Please pray for her family as they adjust to life without Ravyn’s big, beautiful brown eyes! You are in our prayers & we love you very much!
God Bless You!
While getting Brianna seated at the dinner table Saturday night, Brianna was insistent that Kaitlyn come over to her because she was Brianna’s superhero. She gave Kaitlyn a big hug and whispered in her ear. I asked Kaitlyn to immediately write down what Brianna said. Brianna said, “I love you so much and you’re my best friend!” (there was more, but Kaitlyn forgot the rest…that was all she probably needed to hear) Regardless, Kaitlyn walked back to her seat and said, “Finally, I get the appreciation I deserve!” I am sure Brianna is Kaitlyn’s superhero as well, but she just hasn’t said it aloud yet. In recent days, especially since Max’s passing, Kaitlyn has been a HUGE help and is constantly watching out for Brianna. She has been absolutely wonderful and amazing!!
Grandma Close & Great Grandma visited today. Great Grandma cries just thinking about Brianna, but she made it through a long visit without crying. Great Grandma is struggling with lung cancer and Brianna has spent a lot of time worrying about her. Brianna wanted to call Great Grandma & Great Grandpa the other day and she told them how much she loves them. Brianna told me weeks ago that God told her to be close to Great Grandma & Grandpa and she continually talked about visiting them, so she was excited to see Great Grandma!!
The past two days Brianna has become less aware of her surroundings and has not eaten nearly the amount of food as usual. She might also have a little relief because her belly is not so bloated. Matt came by today and brought orange chicken from Panda Express…she didn’t show any excitement at all.
Kaitlyn and I have been sorting through all of Brianna’s notebooks/sketchbooks. WOW!! There is a ton of artwork and journal entries. The majority of which has only been completed since early May. For the past three weeks she has not been able to write or draw anything but scribbles. Most of the drawings are really cute and happy. She has many, many pages where she describes her feelings for us. We filled one binder already and need 2-3 more in order to have a place for all of her other work. We shared the first binder with Brianna today and she was quite impressed with some of her artwork! :o) She doesn’t realize it’s her work, so we looked at each other and smiled.
I really don’t like ending an update on a sad note, but another child has earned her angel wings. Ravyn Finch, the little girls we met at St. Jude passed away, but she was a very strong warrior who put up a very strong fight. Please pray for her family as they adjust to life without Ravyn’s big, beautiful brown eyes! You are in our prayers & we love you very much!
God Bless You!
Don't Worry About Tomorrow - July 11
"Brianna, what are you doing?" I asked.
"I'm going to flick this pea at you."
Brianna and I were the last ones at the dinner table and as I was working on my laptop I looked up to see her elbow on the table and her hand in a fist directed at me. She flicked a pea at me!! Why? Because she wanted to!!
Another teenage tendency that normally would not fly in our house is calling your parent by their first name! Well, Brianna gets annoyed if I don't respond to her immediately (within 1-2 seconds.) She resorts to "Jen" "Jennifer" or even "Jennifer Ann Siemann." Oh well, I can't help but smile...
Fr. Ted came over from our parish to pray and annoint Brianna. It was wonderful that as soon as he annointed her, she reached to give each of us an individual hug, one by one. Even though she was extremely tired and ws having a few delusions while Fr. Ted was speaking, he waited patiently for her to quiet down and continued. Brianna makes the sign of the cross, recites the Our Father, and folds her hands in prayer.
Brianna was discussing Joseph the other day at dinner and it was very interesting that Fr. Ted discussed Joseph and his significance.
Leanne Lacewell visited us the other day and reminded us to enjoy this time which enabled me to get a new perspective. Don't compare her to yesterday, don't worry about what's ahead, enjoy her as she is now! Even though it's with much assistance, she is walking, talking, feeding herself, she is still giving hugs and she knows who we are...most of the time. It's hard not to think about what's ahead, but I also read a page from a devotional that Leanne gave to me. The message was "Do not worry about tomorrow." As a command He said He divided time into days and nights so we have manageable portions of life to handle. His grace is sufficient, but only if you handle one day at a time.
I worry too much about the future and He was clear that if you do that, you will carry more than He intended and will end up with a web of worry, foggy mind which makes it more difficult to hear and listen to Him.Thank you Leanne for the gift as I have already changed my perspective and hope it will continue to guide me through this journey.
God bless all of you who continually lift our spirits and offer words that comfort at just the right time. We love you and are grateful to have you in our lives.
Brianna's mom Jennifer
"I'm going to flick this pea at you."
Brianna and I were the last ones at the dinner table and as I was working on my laptop I looked up to see her elbow on the table and her hand in a fist directed at me. She flicked a pea at me!! Why? Because she wanted to!!
Another teenage tendency that normally would not fly in our house is calling your parent by their first name! Well, Brianna gets annoyed if I don't respond to her immediately (within 1-2 seconds.) She resorts to "Jen" "Jennifer" or even "Jennifer Ann Siemann." Oh well, I can't help but smile...
Fr. Ted came over from our parish to pray and annoint Brianna. It was wonderful that as soon as he annointed her, she reached to give each of us an individual hug, one by one. Even though she was extremely tired and ws having a few delusions while Fr. Ted was speaking, he waited patiently for her to quiet down and continued. Brianna makes the sign of the cross, recites the Our Father, and folds her hands in prayer.
Brianna was discussing Joseph the other day at dinner and it was very interesting that Fr. Ted discussed Joseph and his significance.
Leanne Lacewell visited us the other day and reminded us to enjoy this time which enabled me to get a new perspective. Don't compare her to yesterday, don't worry about what's ahead, enjoy her as she is now! Even though it's with much assistance, she is walking, talking, feeding herself, she is still giving hugs and she knows who we are...most of the time. It's hard not to think about what's ahead, but I also read a page from a devotional that Leanne gave to me. The message was "Do not worry about tomorrow." As a command He said He divided time into days and nights so we have manageable portions of life to handle. His grace is sufficient, but only if you handle one day at a time.
I worry too much about the future and He was clear that if you do that, you will carry more than He intended and will end up with a web of worry, foggy mind which makes it more difficult to hear and listen to Him.Thank you Leanne for the gift as I have already changed my perspective and hope it will continue to guide me through this journey.
God bless all of you who continually lift our spirits and offer words that comfort at just the right time. We love you and are grateful to have you in our lives.
Brianna's mom Jennifer
Thursday, July 9, 2009
Great Day Ending With a Rainbow - July 8
If a good day is our starting point, today was a GREAT day. Brianna even said so when Grandma Close asked her how she was doing this morning. She seemed to be a little more aware of what was happening around her and she talked several times making perfect sense.
Today was the service for Max Lacewell and we decided that I would attend alone so Bob could watch Brianna. It is becoming more difficult and requires more strength to help her get around. We didn’t feel we should leave that burden with the grandmas. Bob and I were watching the morning news then we heard Brianna talking to Max. Bob pressed mute and I moved closer to her bed to see if I could hear what she was saying (it’s difficult to understand her because her speech is slurred most of the time), but I did hear her say something about him sliding across the floor and she wanted to play rock, paper, scissors… I assume she was still talking to Max.
With Brianna’s short term memory loss, she asked Bob where I was today and he said I went to Max’s funeral. She must have forgotten that I told her previously because she began to cry so Bob had to talk her through the emotional moment and give her peace of mind that he is o.k. and she will be o.k. too.
At dinner tonight Bob took his turn at saying grace and told us what he was thankful for. This has been a long tradition in our family and has become a little difficult because when everyone would take their turn the first think we would say we were thankful for was that everyone was safe and healthy. Now it has become something like, we are altogether, had a good day, etc. Tonight, something inspired Brianna to recite the Hail Mary which we have never done at dinner. I asked her why she recited the Hail Mary and she told me that Mary told her to. WOW!!
It takes a long time for Brianna to eat her meals so I sat alone with her for 20-30 minutes after everyone else was done. I noticed once during this time she made another sign of the cross and prayed quietly by herself. It brings me a great deal of peace when I see Brianna making the sign of the cross at random times, then folding her hands in prayer. She is an inspiration to me as I cannot muster the strength or the nerve to pray some of these days. If she can…then I should be able to no matter what!! Lesson learned!
Sometimes it’s difficult to tell if Brianna is having a delusion or is making perfect sense. I decided to press on and ask a few questions then sat quietly listening to her talk. Sometimes talking to me, while other times she talked to no one in particular. I heard her discussing birthdays and she was talking about Joseph. Once again, I was not able to understand what she was saying, but I asked her, “Who’s the Joseph you’re talking about?” She gave me “the look” and said, “Jesus’ father!” Duh, who else would she be talking about…I am so dense! Then she proceeded to tell me for her next birthday she wants to see the big boat with a ribbon. I had no idea where she was going with this but it eventually became clear she was describing Noah’s Ark! I agreed with her…how cool would that be, it’s HUGE!
Lately, Brianna has been talking a lot about packing a bag or suitcase. When I slept with Brianna a few weeks ago I would woke to find her in her closet with clothes spread out all over the room as if she was ready to pack for a vacation. Yesterday, she made mention of a suitcase on three different occasions. The social worker was here and said that it is a common end of life scenario when people begin discussing packing, travelling, etc. At dinner tonight she told me items I should pack in her bag. Coolio (her beta fish…it died 3 days ago but we didn’t tell her), a few toys (maybe Max is making a few requests because the items are not typical Brianna toys), a mattress (I guess she likes her bed too much), special toothpaste, toothbrush and mouthwash (glad she is into good hygiene), and her Hope Bear (her stuffed, praying bear which is her security item.)
I find a lot of this reassuring but also scary at the same time. I am definitely very reassured that she has reached a level of faith that I don’t think I will ever reach! Though she still gets worried and tells us she is scared, she must also feel God’s love taking care of her, especially when she is able to feel and speak openly about what she is seeing, hearing, and feeling. Today was a GREAT day!
By the way, I missed it…but I heard there was a rainbow at the end of the rainy day today. Must be a sign from Max that things are good and beautiful! God Bless Everyone!
Today was the service for Max Lacewell and we decided that I would attend alone so Bob could watch Brianna. It is becoming more difficult and requires more strength to help her get around. We didn’t feel we should leave that burden with the grandmas. Bob and I were watching the morning news then we heard Brianna talking to Max. Bob pressed mute and I moved closer to her bed to see if I could hear what she was saying (it’s difficult to understand her because her speech is slurred most of the time), but I did hear her say something about him sliding across the floor and she wanted to play rock, paper, scissors… I assume she was still talking to Max.
With Brianna’s short term memory loss, she asked Bob where I was today and he said I went to Max’s funeral. She must have forgotten that I told her previously because she began to cry so Bob had to talk her through the emotional moment and give her peace of mind that he is o.k. and she will be o.k. too.
At dinner tonight Bob took his turn at saying grace and told us what he was thankful for. This has been a long tradition in our family and has become a little difficult because when everyone would take their turn the first think we would say we were thankful for was that everyone was safe and healthy. Now it has become something like, we are altogether, had a good day, etc. Tonight, something inspired Brianna to recite the Hail Mary which we have never done at dinner. I asked her why she recited the Hail Mary and she told me that Mary told her to. WOW!!
It takes a long time for Brianna to eat her meals so I sat alone with her for 20-30 minutes after everyone else was done. I noticed once during this time she made another sign of the cross and prayed quietly by herself. It brings me a great deal of peace when I see Brianna making the sign of the cross at random times, then folding her hands in prayer. She is an inspiration to me as I cannot muster the strength or the nerve to pray some of these days. If she can…then I should be able to no matter what!! Lesson learned!
Sometimes it’s difficult to tell if Brianna is having a delusion or is making perfect sense. I decided to press on and ask a few questions then sat quietly listening to her talk. Sometimes talking to me, while other times she talked to no one in particular. I heard her discussing birthdays and she was talking about Joseph. Once again, I was not able to understand what she was saying, but I asked her, “Who’s the Joseph you’re talking about?” She gave me “the look” and said, “Jesus’ father!” Duh, who else would she be talking about…I am so dense! Then she proceeded to tell me for her next birthday she wants to see the big boat with a ribbon. I had no idea where she was going with this but it eventually became clear she was describing Noah’s Ark! I agreed with her…how cool would that be, it’s HUGE!
Lately, Brianna has been talking a lot about packing a bag or suitcase. When I slept with Brianna a few weeks ago I would woke to find her in her closet with clothes spread out all over the room as if she was ready to pack for a vacation. Yesterday, she made mention of a suitcase on three different occasions. The social worker was here and said that it is a common end of life scenario when people begin discussing packing, travelling, etc. At dinner tonight she told me items I should pack in her bag. Coolio (her beta fish…it died 3 days ago but we didn’t tell her), a few toys (maybe Max is making a few requests because the items are not typical Brianna toys), a mattress (I guess she likes her bed too much), special toothpaste, toothbrush and mouthwash (glad she is into good hygiene), and her Hope Bear (her stuffed, praying bear which is her security item.)
I find a lot of this reassuring but also scary at the same time. I am definitely very reassured that she has reached a level of faith that I don’t think I will ever reach! Though she still gets worried and tells us she is scared, she must also feel God’s love taking care of her, especially when she is able to feel and speak openly about what she is seeing, hearing, and feeling. Today was a GREAT day!
By the way, I missed it…but I heard there was a rainbow at the end of the rainy day today. Must be a sign from Max that things are good and beautiful! God Bless Everyone!
Brianna's Hugs - July 6
Yesterday was a very difficult day for us. To learn of Max’s passing and also deal with Brianna’s increased pain… I finally had enough at 9 PM. I went upstairs, had my breakdown, and went to bed. I said long ago that Max and Brianna share a special bond. It was mentioned in the WCIU news story and I have mentioned it in previous updates, but I want you all to know that it is much more than sharing a terrible disease. We did not tell Brianna about Max until after dinner, but she made a few statements during the day making us wonder how deep the connection goes. The most interesting was when Brianna’s teacher Jill was sitting with her so I could take the dog outside and when I came inside Jill told me someone called but they didn’t answer. Brianna, who was in and out of sleep sitting on the couch said, “Did it say Lacewell on the caller ID?” Jill and I looked at each other and I told Jill that Leanne and I only use our cell phones and there has never been a Lacewell call to our house phone. I told Brianna about Max after dinner and she was very upset, in disbelief because, “He was a good boy and didn’t do anything to anyone!” It is a difficult concept for adults to grasp much less a child, especially one fighting cancer themselves. Today she had a conversation with Max. I wasn’t able to hear exactly what was said, but she was talking to Max!!
Through all of her pain and confusion Brianna is still able to poke fun at her sister Kaitlyn. The other day at dinner she said that Kaitlyn was going to end up in juvie because she continues to streak through the White House. No idea where that came from, but it made us laugh. Kaitlyn is learning to take it with a grain of salt…just shakes her head and looks at us as if, “what the heck?” We told her to enjoy it because it’s the Brianna we know and not the cancer. Brianna’s favorite word is “Whatever” and she is still gives me ‘the look,’ anyone who has a teenager knows ‘the look.’ They don’t have to say anything but you know what they are thinking! “What are you stupid?” or “You’ve got to be kidding me!” It’s nice to know I still annoy her. She has mastered the eye roll as most teenagers do, but she adds the “whatever” at the end. Normally, the “whatever” would bring a lecture or some other discipline action…but I am just glad to see glimpses of Brianna without cancer. Brianna wanted to say something yesterday, but realized I was distracted by some guests so she said to those near her, “Whatever, I will just wait for mom to listen because I am not going to repeat myself!” (Eye roll…sigh!)
Today we witnessed two small miracles!! Brianna called for Kaitlyn, not once… but twice, to come over so she could hug her and tell her how much she loves her….over and over! She wanted to wear her t-shirt from Mary Poppins so she could match Kaitlyn and asked Kaitlyn to climb in bed with her. I’m sooo very thankful for this as it did my heart good and definitely showed Kaitlyn how much she loves her! This made today a GREAT day!
Even though Brianna is struggling with vision, balance and is more confused, she is still anxious to put her arms out for hugs from everyone. Sometimes she will even call for us just to give us a hug!! Brianna loves Nurse Jane (hospice nurse) who is able to get many smiles and even a few giggles, which is very rare. Brianna is always the first to give people hugs…you never have to ask her for a hug.
The past couple of weeks have been heartbreaking for those living in and following the DIPG community. I am not following many children, but through the few I do follow I have learned there were at least 7 children in the past 10 days that have passed from this horrible cancer. How long will it be before we can even find a treatment that might work? I am including links to two organizations, started by parents who have lost a child to DIPG and who are making a commitment to research and finding a cure. I also am very thankful to the Lacewell Family who will use monies from the Max Lacewell Benefit Fund to create an endowment for Children's Hospital in Chicago, which will be spent for research on brainstem gliomas. God Bless Max and his family!
http://www.caringbridge.org/visit/maxlacewell
www.thecurestartsnow.orgwww.justonemoreday.org
Through all of her pain and confusion Brianna is still able to poke fun at her sister Kaitlyn. The other day at dinner she said that Kaitlyn was going to end up in juvie because she continues to streak through the White House. No idea where that came from, but it made us laugh. Kaitlyn is learning to take it with a grain of salt…just shakes her head and looks at us as if, “what the heck?” We told her to enjoy it because it’s the Brianna we know and not the cancer. Brianna’s favorite word is “Whatever” and she is still gives me ‘the look,’ anyone who has a teenager knows ‘the look.’ They don’t have to say anything but you know what they are thinking! “What are you stupid?” or “You’ve got to be kidding me!” It’s nice to know I still annoy her. She has mastered the eye roll as most teenagers do, but she adds the “whatever” at the end. Normally, the “whatever” would bring a lecture or some other discipline action…but I am just glad to see glimpses of Brianna without cancer. Brianna wanted to say something yesterday, but realized I was distracted by some guests so she said to those near her, “Whatever, I will just wait for mom to listen because I am not going to repeat myself!” (Eye roll…sigh!)
Today we witnessed two small miracles!! Brianna called for Kaitlyn, not once… but twice, to come over so she could hug her and tell her how much she loves her….over and over! She wanted to wear her t-shirt from Mary Poppins so she could match Kaitlyn and asked Kaitlyn to climb in bed with her. I’m sooo very thankful for this as it did my heart good and definitely showed Kaitlyn how much she loves her! This made today a GREAT day!
Even though Brianna is struggling with vision, balance and is more confused, she is still anxious to put her arms out for hugs from everyone. Sometimes she will even call for us just to give us a hug!! Brianna loves Nurse Jane (hospice nurse) who is able to get many smiles and even a few giggles, which is very rare. Brianna is always the first to give people hugs…you never have to ask her for a hug.
The past couple of weeks have been heartbreaking for those living in and following the DIPG community. I am not following many children, but through the few I do follow I have learned there were at least 7 children in the past 10 days that have passed from this horrible cancer. How long will it be before we can even find a treatment that might work? I am including links to two organizations, started by parents who have lost a child to DIPG and who are making a commitment to research and finding a cure. I also am very thankful to the Lacewell Family who will use monies from the Max Lacewell Benefit Fund to create an endowment for Children's Hospital in Chicago, which will be spent for research on brainstem gliomas. God Bless Max and his family!
http://www.caringbridge.org/visit/maxlacewell
www.thecurestartsnow.orgwww.justonemoreday.org
Never Be Discouraged (We're Trying!) - July 4
The weather today matches our spirit on this Fourth of July holiday. It’s cloudy, rainy, chilly…no cookouts, no fire in the firepit, no s’mores, and no fireworks. Brianna struggles each day and is losing her spirit. She now needs assistance at all times as her balance is off, she has fallen a few times, and even has difficulty eating. This became apparent Thursday and Friday as Aunt Faith was here to visit and help out. She witnessed Brianna’s balance deteriorate in just 2 days. What's worse is her mind is almost completely gone and she has no sense of where she is or who she is with. She carries on conversations with people who are not there and she’ll call out for you when you are sitting next to her. If it isn’t enough to watch the physical breakdown of your child, we have also lost her mentally as well. Conversations are non-sensical and there are very few, rare moments when a glimmer of Brianna shines through…like poking fun at Kaitlyn or rolling her eyes at me. The rest of the time, she appears to be in her own world!
She fell the other day and as Kaitlyn jumped to try to rush to catch her, Brianna started screaming at Kaitlyn, “Get away, I hate you, get away!!” In Brianna’s mind, Kaitlyn tried to hurt her and pushed her down. This ripped Kaitlyn’s heart out and after I explained to Brianna what she was trying to do, she hugged Kaitlyn and apologized and told her she loved her. Thank goodness Aunt Faith was there to comfort Kaitlyn and bring her back downstairs to let Brianna apologize. There was also an incident where she started yelling at me to keep Bob away because he was going to hurt her, when usually he is the one who brings more comfort to her than anyone. She trusts him to help her more than me….probably because she feels safer as he is much stronger than I.
Nurse Jessica began helping out from 11pm-7am, Monday-Friday and it has lifted a huge weight. Brianna still doesn’t sleep well at night and we have no idea what keeps her going! We have had plenty of family and friends coming over to help during the day, to allow for a short emotional break or a much needed nap. I was preparing Brianna’s breakfast today only to look at her eating a crayon. She doesn’t remember eating so the effect of the steroid is worse than ever, not because of the dosage, but because her memory doesn’t allow her to realize she just ate 2 minutes ago. She can no longer reason and trying to keep a 13 year old contained is extremely challenging. Another emotional toll is having my 13 year old calling herself, “fattie!” She also asks, “Do you think I’m pretty?” “You can’t lift me, I’m such a fattie!” Thank you to the steroids, not only does Brianna have to worry about cancer, she has to suffer an additional emotional toll of feeling fat and ugly! No matter what you say to her, she won’t remember so she continues to ask or repeat these questions and statements. She also has stretch marks over much of her stomach, hips, thighs, legs, etc. What makes me very angry is the fact that there is a drug out there that treats edema without all of these negative side-effects, but it hasn’t been approved for children! A 13 year old girl who went from 105 lbs-at least 140 lbs. UGH….I wish I could cut through the red tape!
We had equipment delivered to our house yesterday. A hospital bed being one of them….this is heartbreaking!! I had to go upstairs yesterday and allow Bob and Jill to take the delivery. Today, as much as I hate to admit it, the bed has proven to be a benefit as it keeps her safer by making it difficult to get up and down and risk falling. She has to have our help to get out of bed where as on the couch she would get up and easily fall. The bed is in our family room so she will have company all day long and Bob and I will take turns staying with her on the weekend nights. As long as she can still use the stairs, we will have her sleep in her bed when the nurse comes to help. She loves her bedroom!!She tries to color or draw, but usually ends up with lines, circles, or squiggles on a page. Her speech is slurring and it is becoming more difficult to understand her. Thus, if you ask her to speak up or repeat herself she becomes very frustrated. Her mental, emotional, and physical condition deteriorates every single day. We never know what we are going to experience from one moment to the next.
Our heart is also breaking for our friend Max! We seem to have been on identical paths since diagnosis. Today, Brianna started crying for Kole (our buddy from St. Jude who we pray remains stable!) She misses him and wanted to see him soooo bad!! Another friend from St. Jude, Ravyn Finch is also not doing well so hearts are breaking all over the place.I don’t even know what to ask for anymore. Obviously, prayers…but I don’t have any energy left to even begin to think about what to pray for…..I am trying not to get discouraged and find the strength to carry on, but it is very difficult. My sister sent me this poem which helps, but I think I need to read it more often.
“Never Be Discouraged”A Poem By: Helen Steiner Rice
There is really nothing we need to knowor even try to understand,If we refuse to be discouragedand trust God's guiding hand.So take heart and meet each minutewith faith in God's great love,Aware that every day of lifeis controlled by God above.And never dread tomorrowor what the future brings,Just pray for strength and courageand trust God in all things.And never grow discouraged-be patient and just wait,For God never comes too early,and He never comes too late.
She fell the other day and as Kaitlyn jumped to try to rush to catch her, Brianna started screaming at Kaitlyn, “Get away, I hate you, get away!!” In Brianna’s mind, Kaitlyn tried to hurt her and pushed her down. This ripped Kaitlyn’s heart out and after I explained to Brianna what she was trying to do, she hugged Kaitlyn and apologized and told her she loved her. Thank goodness Aunt Faith was there to comfort Kaitlyn and bring her back downstairs to let Brianna apologize. There was also an incident where she started yelling at me to keep Bob away because he was going to hurt her, when usually he is the one who brings more comfort to her than anyone. She trusts him to help her more than me….probably because she feels safer as he is much stronger than I.
Nurse Jessica began helping out from 11pm-7am, Monday-Friday and it has lifted a huge weight. Brianna still doesn’t sleep well at night and we have no idea what keeps her going! We have had plenty of family and friends coming over to help during the day, to allow for a short emotional break or a much needed nap. I was preparing Brianna’s breakfast today only to look at her eating a crayon. She doesn’t remember eating so the effect of the steroid is worse than ever, not because of the dosage, but because her memory doesn’t allow her to realize she just ate 2 minutes ago. She can no longer reason and trying to keep a 13 year old contained is extremely challenging. Another emotional toll is having my 13 year old calling herself, “fattie!” She also asks, “Do you think I’m pretty?” “You can’t lift me, I’m such a fattie!” Thank you to the steroids, not only does Brianna have to worry about cancer, she has to suffer an additional emotional toll of feeling fat and ugly! No matter what you say to her, she won’t remember so she continues to ask or repeat these questions and statements. She also has stretch marks over much of her stomach, hips, thighs, legs, etc. What makes me very angry is the fact that there is a drug out there that treats edema without all of these negative side-effects, but it hasn’t been approved for children! A 13 year old girl who went from 105 lbs-at least 140 lbs. UGH….I wish I could cut through the red tape!
We had equipment delivered to our house yesterday. A hospital bed being one of them….this is heartbreaking!! I had to go upstairs yesterday and allow Bob and Jill to take the delivery. Today, as much as I hate to admit it, the bed has proven to be a benefit as it keeps her safer by making it difficult to get up and down and risk falling. She has to have our help to get out of bed where as on the couch she would get up and easily fall. The bed is in our family room so she will have company all day long and Bob and I will take turns staying with her on the weekend nights. As long as she can still use the stairs, we will have her sleep in her bed when the nurse comes to help. She loves her bedroom!!She tries to color or draw, but usually ends up with lines, circles, or squiggles on a page. Her speech is slurring and it is becoming more difficult to understand her. Thus, if you ask her to speak up or repeat herself she becomes very frustrated. Her mental, emotional, and physical condition deteriorates every single day. We never know what we are going to experience from one moment to the next.
Our heart is also breaking for our friend Max! We seem to have been on identical paths since diagnosis. Today, Brianna started crying for Kole (our buddy from St. Jude who we pray remains stable!) She misses him and wanted to see him soooo bad!! Another friend from St. Jude, Ravyn Finch is also not doing well so hearts are breaking all over the place.I don’t even know what to ask for anymore. Obviously, prayers…but I don’t have any energy left to even begin to think about what to pray for…..I am trying not to get discouraged and find the strength to carry on, but it is very difficult. My sister sent me this poem which helps, but I think I need to read it more often.
“Never Be Discouraged”A Poem By: Helen Steiner Rice
There is really nothing we need to knowor even try to understand,If we refuse to be discouragedand trust God's guiding hand.So take heart and meet each minutewith faith in God's great love,Aware that every day of lifeis controlled by God above.And never dread tomorrowor what the future brings,Just pray for strength and courageand trust God in all things.And never grow discouraged-be patient and just wait,For God never comes too early,and He never comes too late.
Kaitlyn and Haley Inspire Too - July 1
My stepdaughter Madison was so inspired by the success of Kaitlyn's and Haley's lemonade stand that she wants to open her own lemonade stand! It will be open the following 2 days:
Thursday, July 2nd from 2-6p.m.Friday, July 3rd from 2-6p.m.
Location: Madison's Grandma's DrivewayStreet: 175 Raven Ln.City/Town: Bloomingdale, IL
We will be selling brownies, cookies (Maria's homemade ones) and lemonade. Please come show your support! All money raised will go to the brianna sharp medical fund.
If you are unable to attend and would like to donate please go to www.curebrianna.com. Click on the online donation button and instead of putting in your home phone type "madison's mission".
Checks can also be mailed to:5554 Gable Ct.Hanover Park, Il. 60133(please make payable to The Brianna Sharp Medical Fund)
Even though Eric, Zachary, Madison and Haley are not Brianna's blood sister they see Brianna as their own sister and want to love and protect her just as though Brianna was their own sister. They are very bright, smart and caring kids that only want the best for Brianna. As parents we are quite proud of them.
Bob (Jen's husband) and Maria ( my wife) have been instrumental in Brianna's life as well and love and care for Brianna and Kaitlyn as though they are their own children. I felt the need to write about them because I want people to know that they are instrumental in every way with Brianna and helping her in this fight against DIPG. Its so easy for people to focus on Jennifer and I because we are her biological parents but I felt the need to give the spotlight to the step parents and step siblings in this post because they deserve it. I wanted to thank them both with this post because I don't think they get enough thanks (at least from me I know)
We have been overwhelmed with the love and support of our friends from all over and we are grateful for your prayers. We feel it every day.
Matt
Thursday, July 2nd from 2-6p.m.Friday, July 3rd from 2-6p.m.
Location: Madison's Grandma's DrivewayStreet: 175 Raven Ln.City/Town: Bloomingdale, IL
We will be selling brownies, cookies (Maria's homemade ones) and lemonade. Please come show your support! All money raised will go to the brianna sharp medical fund.
If you are unable to attend and would like to donate please go to www.curebrianna.com. Click on the online donation button and instead of putting in your home phone type "madison's mission".
Checks can also be mailed to:5554 Gable Ct.Hanover Park, Il. 60133(please make payable to The Brianna Sharp Medical Fund)
Even though Eric, Zachary, Madison and Haley are not Brianna's blood sister they see Brianna as their own sister and want to love and protect her just as though Brianna was their own sister. They are very bright, smart and caring kids that only want the best for Brianna. As parents we are quite proud of them.
Bob (Jen's husband) and Maria ( my wife) have been instrumental in Brianna's life as well and love and care for Brianna and Kaitlyn as though they are their own children. I felt the need to write about them because I want people to know that they are instrumental in every way with Brianna and helping her in this fight against DIPG. Its so easy for people to focus on Jennifer and I because we are her biological parents but I felt the need to give the spotlight to the step parents and step siblings in this post because they deserve it. I wanted to thank them both with this post because I don't think they get enough thanks (at least from me I know)
We have been overwhelmed with the love and support of our friends from all over and we are grateful for your prayers. We feel it every day.
Matt
Same Ol' Brianna - Too Sweet - June 30
We seem to have a new medication schedule for Brianna that is helping with the headaches, nausea, and sleeplessness. Last night she slept from 10-6, took some medication and ate a small snack, then slept again until 8:30!! Woo-hoo!! We were able to get a handful of hours in one shot! Tonight we begin a schedule with a nurse who will be here Monday-Friday, 11PM-7AM…. So maybe Bob and I can get out of our zombie-like state!!Last night we had ALL of Brianna’s cousins over for a sleepover/lateover. So you can imagine, I will list names and ages...just to give you an idea of the craziness! (Bridget 21, Bernadette 21, Amanda 19, Lauren 19, Christopher 16, J.J. 15, Kayla 9, Brendan 7, Colleen 4...and that does not include our four kids (Brianna 13, Kaitlyn 11, Eric 14, & Haley 12)!! I could only imagine how insane it would be to add the cousins on her dad's side of the family!
By the time everyone arrived she was tired and didn’t feel like participating in the games, but she did enjoy having everyone together. It was tough on several of the cousins to see Brianna’s current state and several witnessed her fall twice this morning. Once Bob and I helped her back up and gave her the walker, she was apologizing to everyone while she walked to the kitchen. Typical Brianna, worried about everyone else and their feelings. We were finally able to get all of the cousins together at one time and this is nearly impossible with ages ranging from 21-4, jobs, college, sports, family commitments, etc. Brianna’s 13th birthday was close but Amanda was at Notre Dame, last night we were able to finally make it happen as the youngest was able to arrive before Brianna passed out for the night. We will be posting pictures soon since it has been a long time!
Brianna has had some increased headaches and nausea but it seems to have gotten under control with the new medication schedule. When she does have a few severe episodes she is still able to control herself a lot better than I would be able to. For example, in the Dells she was complaining of the worst headache and nausea EVER!!! She said, “I have a lot of words to describe how I feel right now, but God would not be happy with me!” Hell, oops, I mean heck…I would just let it out with my Irish temper and likely include colorful language (which is now used very rarely…24/7 with Brianna for 8 weeks cured me) I highly doubt I would have the restraint and disciplne to be in so much pain without using a single bad word! No matter what, she does not want to offend God.
Finally, she did view the video from WCIU and I wondered how she would react. Though she was a little drowsy she did watch the entire video. I was prepared for all sorts of questions and rehearsed what I would say or how I would explain things to her if she picked up on the statistics. She asked me to rewind a part where it showed the scan of her head. She asked, “Is that my head?” I told her yes. She then went on to say, “MAN, I have a BIG head!” Whew…that was all she had to say! She enjoyed the video even though she was almost impossible to deal with during taping because she is very camera shy!!
Thank you to Aunt Jackie and Uncle Dave for hosting the Poker Night Fundraiser!! We really appreciate all of your help around the house,helping with the kids, and efforts in fundraising!!
I want to ask for more prayers from everyone as we learned that the mother (Kim) of another DIPG child (Caleb Spady) was just diagnosed with colon cancer. Doctors are hopeful that surgery will resolve the issue, but please send some extra prayers. She is a mother of 4 boys, had breast cancer, is dealing with colon cancer, and is also going through the same battle we are…I can not even imagine what the family is feeling and experiencing right now. You can visit their site on carepages if you are interested in sending a well wish. Just type “KeepingUpWithCaleb” in the box under the “Visit” icon. Also, please keep the Reilly family in your prayers as they adjust to the loss of sweet Liam. Keep in your thoughts and prayers all the children and families battling progression and also pray for those who are stable, that they may continue to be blessed with good news!
Thank you and love to you all!
Brianna Sharp & Family: Jen & Bob Siemann (Eric, Brianna, Haley, & Kaitlyn), Matt & Maria Sharp (Zachary, Madison, & Gianna)
By the time everyone arrived she was tired and didn’t feel like participating in the games, but she did enjoy having everyone together. It was tough on several of the cousins to see Brianna’s current state and several witnessed her fall twice this morning. Once Bob and I helped her back up and gave her the walker, she was apologizing to everyone while she walked to the kitchen. Typical Brianna, worried about everyone else and their feelings. We were finally able to get all of the cousins together at one time and this is nearly impossible with ages ranging from 21-4, jobs, college, sports, family commitments, etc. Brianna’s 13th birthday was close but Amanda was at Notre Dame, last night we were able to finally make it happen as the youngest was able to arrive before Brianna passed out for the night. We will be posting pictures soon since it has been a long time!
Brianna has had some increased headaches and nausea but it seems to have gotten under control with the new medication schedule. When she does have a few severe episodes she is still able to control herself a lot better than I would be able to. For example, in the Dells she was complaining of the worst headache and nausea EVER!!! She said, “I have a lot of words to describe how I feel right now, but God would not be happy with me!” Hell, oops, I mean heck…I would just let it out with my Irish temper and likely include colorful language (which is now used very rarely…24/7 with Brianna for 8 weeks cured me) I highly doubt I would have the restraint and disciplne to be in so much pain without using a single bad word! No matter what, she does not want to offend God.
Finally, she did view the video from WCIU and I wondered how she would react. Though she was a little drowsy she did watch the entire video. I was prepared for all sorts of questions and rehearsed what I would say or how I would explain things to her if she picked up on the statistics. She asked me to rewind a part where it showed the scan of her head. She asked, “Is that my head?” I told her yes. She then went on to say, “MAN, I have a BIG head!” Whew…that was all she had to say! She enjoyed the video even though she was almost impossible to deal with during taping because she is very camera shy!!
Thank you to Aunt Jackie and Uncle Dave for hosting the Poker Night Fundraiser!! We really appreciate all of your help around the house,helping with the kids, and efforts in fundraising!!
I want to ask for more prayers from everyone as we learned that the mother (Kim) of another DIPG child (Caleb Spady) was just diagnosed with colon cancer. Doctors are hopeful that surgery will resolve the issue, but please send some extra prayers. She is a mother of 4 boys, had breast cancer, is dealing with colon cancer, and is also going through the same battle we are…I can not even imagine what the family is feeling and experiencing right now. You can visit their site on carepages if you are interested in sending a well wish. Just type “KeepingUpWithCaleb” in the box under the “Visit” icon. Also, please keep the Reilly family in your prayers as they adjust to the loss of sweet Liam. Keep in your thoughts and prayers all the children and families battling progression and also pray for those who are stable, that they may continue to be blessed with good news!
Thank you and love to you all!
Brianna Sharp & Family: Jen & Bob Siemann (Eric, Brianna, Haley, & Kaitlyn), Matt & Maria Sharp (Zachary, Madison, & Gianna)
Little Helpers & Lemonade - June 27
Before I give you the final total for Haley and Kaitlyn’s Lemonade Stand Fundraiser, I want to tell you about 3 other kids who made their lemonade stand during a garage sale in Montgomery, IL. Logan Slou (4) along with Jordan & Marin Munos (10) decided that they wanted to sell lemonade and give the money to Brianna, because, “all they want is for her to get better.” Logan even had a choice to take the money and go to Target to get a toy, but he said he would rather the money go to Brianna so she can get better. What 4 year old passes on a toy at Target?? The twins lost their dad to cancer when they were only one year old and now their mother is taking a daily chemo pill to fight skin cancer. These little helpers raised $20 and wanted it all to go to Brianna. When Bob and I received the money with their notes, it really touched us. Please pray for the twins and their mother so they may be cured and freed from cancer in their family!
Wednesday was a hot, humid day here so Haley and Kaitlyn decided to set up a lemonade stand to raise money for Brianna’s Brigade. They had a very successful first day making $178. It motivated them to set up the stand on Thursday and after I saw how hard they were working I put out a not to my emails friends, who must have also passed along word. I think after day 2 the girls were up to over $700. They decided they would open their stand on Friday from 11-3 PM hoping to reach a $1000. I mentioned this on the carepage update and not only did they reach their goal, they went way beyond…the GRAND TOTAL for the LEMONADE STAND was $1,850.00!!***If you paid online it is not included in this total as I do not have access to that account. Please email me at jensiemann@sbcglobal.net so I can add your name and amount and verify that Haley & Kaitlyn receive the monies, then we will add it to the grand total. They would be SHOCKED if we could tell them they raised over $2,000, which they are close to doing!! We are so proud of Kaitlyn and Haley for all of their hard work. At the end of the day, Brianna gave each of them a hug and thanked them for everything they did!
I would like to ask for some extra prayers for all of Brianna’s siblings, who are now witnessing Brianna’s decline in health and abilities. Kaitlyn is especially struggling as she is Brianna’s only true sibling and they are best friends. They have a love/hate relationship, but it leads to feelings of guilt as one child falls ill they both wonder if they have been nice enough to the other. Kaitlyn finally had a breakdown last night and came crying to me saying she doesn’t want to lose Brianna, she doesn’t want her to leave us, and Brianna is the best sister ever. I comforted her best I could by letting her know that we will take one day at a time and she can spend as much time with her expressing love for Brianna and letting Brianna know she is the best big sister. I had the baby monitor on in my room and I was able to listen to Kaitlyn climbing in bed with Brianna and she really began expressing her feelings of love and admiration for her big sister. It did not take too long for her to regain composure because she is a very strong girl who doesn’t show emotion like Brianna. We hope Brianna is able to feel the love and admiration from all of her siblings, and that they may feel it too….hopefully, no one will be left wishing they would have said more or done more to show their feelings for each other.
We will try to get back to focusing on each day and making it the best day possible, but it is not easy as we battle deeper, scarier emotions than ever before. Until we get there we need to thank everyone for coming over each day to keep Brianna entertained, occupied, or just to keep an eye on her since she can disappear in a second….she is so quiet when she moves about and sometimes gets frustrated if you fuss over her too much. Aunt Pat, Grandma Siemann, Aunt Georgia, Aunt Jackie, Grandma Close, and many other friends and family have helped clean, organize, cook, shop, helping out in any way to make it easier on me and Bob as we struggle with our emotions on top of huge sleep deprivation. We are tag-teaming the night shift to make sure Brianna stays safe. However, setting up high tech baby monitors, using child door handle covers, etc. she is still able to manage and maneuver in order to get what she wants…mainly food!! I sleep with her and she can slip out of bed and the next thing I know I am covered with clothes as she decides to clean out her closet. I heard her calling my name late last night and the baby monitors and sleeping in the same room, she still managed to give herself a bath but fell when she got back into the bedroom. We are doing everything we can to keep her from getting hurt, or hurting others….Bob and I are looking at finding someone to watch her at night as he needs to be able to function for work and I need to be able to care for her during the day without being in a zombie state.
Thank you for all your extra prayers and kind words over the past two weeks! We also thank you for your kindness and generosity in helping provide meals, gift cards, and offers to come help provide relief so we may get a brief reprieve and reenergize in order to better care for Brianna.
Wednesday was a hot, humid day here so Haley and Kaitlyn decided to set up a lemonade stand to raise money for Brianna’s Brigade. They had a very successful first day making $178. It motivated them to set up the stand on Thursday and after I saw how hard they were working I put out a not to my emails friends, who must have also passed along word. I think after day 2 the girls were up to over $700. They decided they would open their stand on Friday from 11-3 PM hoping to reach a $1000. I mentioned this on the carepage update and not only did they reach their goal, they went way beyond…the GRAND TOTAL for the LEMONADE STAND was $1,850.00!!***If you paid online it is not included in this total as I do not have access to that account. Please email me at jensiemann@sbcglobal.net so I can add your name and amount and verify that Haley & Kaitlyn receive the monies, then we will add it to the grand total. They would be SHOCKED if we could tell them they raised over $2,000, which they are close to doing!! We are so proud of Kaitlyn and Haley for all of their hard work. At the end of the day, Brianna gave each of them a hug and thanked them for everything they did!
I would like to ask for some extra prayers for all of Brianna’s siblings, who are now witnessing Brianna’s decline in health and abilities. Kaitlyn is especially struggling as she is Brianna’s only true sibling and they are best friends. They have a love/hate relationship, but it leads to feelings of guilt as one child falls ill they both wonder if they have been nice enough to the other. Kaitlyn finally had a breakdown last night and came crying to me saying she doesn’t want to lose Brianna, she doesn’t want her to leave us, and Brianna is the best sister ever. I comforted her best I could by letting her know that we will take one day at a time and she can spend as much time with her expressing love for Brianna and letting Brianna know she is the best big sister. I had the baby monitor on in my room and I was able to listen to Kaitlyn climbing in bed with Brianna and she really began expressing her feelings of love and admiration for her big sister. It did not take too long for her to regain composure because she is a very strong girl who doesn’t show emotion like Brianna. We hope Brianna is able to feel the love and admiration from all of her siblings, and that they may feel it too….hopefully, no one will be left wishing they would have said more or done more to show their feelings for each other.
We will try to get back to focusing on each day and making it the best day possible, but it is not easy as we battle deeper, scarier emotions than ever before. Until we get there we need to thank everyone for coming over each day to keep Brianna entertained, occupied, or just to keep an eye on her since she can disappear in a second….she is so quiet when she moves about and sometimes gets frustrated if you fuss over her too much. Aunt Pat, Grandma Siemann, Aunt Georgia, Aunt Jackie, Grandma Close, and many other friends and family have helped clean, organize, cook, shop, helping out in any way to make it easier on me and Bob as we struggle with our emotions on top of huge sleep deprivation. We are tag-teaming the night shift to make sure Brianna stays safe. However, setting up high tech baby monitors, using child door handle covers, etc. she is still able to manage and maneuver in order to get what she wants…mainly food!! I sleep with her and she can slip out of bed and the next thing I know I am covered with clothes as she decides to clean out her closet. I heard her calling my name late last night and the baby monitors and sleeping in the same room, she still managed to give herself a bath but fell when she got back into the bedroom. We are doing everything we can to keep her from getting hurt, or hurting others….Bob and I are looking at finding someone to watch her at night as he needs to be able to function for work and I need to be able to care for her during the day without being in a zombie state.
Thank you for all your extra prayers and kind words over the past two weeks! We also thank you for your kindness and generosity in helping provide meals, gift cards, and offers to come help provide relief so we may get a brief reprieve and reenergize in order to better care for Brianna.
The Lemonade Stand - June 25
Brianna's sisters (Haley and Kaitlyn) decided they wanted to set-up a lemonade stand to raise money for Brianna's Brigade. They set a goal of raising $1,000 for the Brigade and after 2 days they are very close to that goal...they only need to raise $300 more to reach their goal.
Brianna was blessed to see some of her teachers, best friends, neighbors, and was supported all day by Grandma Siemann, Aunt Georgia, and cousin Amanda. They spent the day with us helping keep an eye on Brianna while I took breaks to assist Haley and Kaitlyn in their efforts. Though Brianna was half awake/half asleep all day long, she still showed some smiles to those who popped in the house to see her and give her a hug!
Today the girls had a visit from a police officer and he told us he would put the word out. Soon there was a steady stream of police making our street a stop on their rounds. By 4 PM we had firetrucks and all!!! Brianna found the energy to come outside to see the firetrucks and was able to sit in the firetruck with the help of a few firemen. This is completely out of her character!! It took all her energy but she still insisted on walking back in the house.
SO, if you have not heard about the lemonade stand fundraiser and are in the Naperville area, or know anyone in the area, please pass word along so Kaitlyn and Haley can reach their goal of raising $1000 to help their sister and others fight pediatric brain cancer! They will operate 11 AM- 3 PM, at 3527 Timber Creek Ln, Naperville, IL.
Thank you and God Bless!!
Brianna was blessed to see some of her teachers, best friends, neighbors, and was supported all day by Grandma Siemann, Aunt Georgia, and cousin Amanda. They spent the day with us helping keep an eye on Brianna while I took breaks to assist Haley and Kaitlyn in their efforts. Though Brianna was half awake/half asleep all day long, she still showed some smiles to those who popped in the house to see her and give her a hug!
Today the girls had a visit from a police officer and he told us he would put the word out. Soon there was a steady stream of police making our street a stop on their rounds. By 4 PM we had firetrucks and all!!! Brianna found the energy to come outside to see the firetrucks and was able to sit in the firetruck with the help of a few firemen. This is completely out of her character!! It took all her energy but she still insisted on walking back in the house.
SO, if you have not heard about the lemonade stand fundraiser and are in the Naperville area, or know anyone in the area, please pass word along so Kaitlyn and Haley can reach their goal of raising $1000 to help their sister and others fight pediatric brain cancer! They will operate 11 AM- 3 PM, at 3527 Timber Creek Ln, Naperville, IL.
Thank you and God Bless!!
Liam Reilly's Words - June 25
Though we had very difficult days lately, the Reilly family (Ryan, Maria, big sister Maeve, identical twin Owen, and little brother Aidan) needs many prayers for peace, love, and comfort during the reent passing of their sweet, Irish boy, Liam. We have asked everyone in previous updates to send prayers for this family, but we hope you can send some extra prayers as they struggle to adjust to the loss of their sweet child. Liam earned his angel wings very early morning on Monday, June 22. I am including a quote from Liam that shows what an amazing and beautiful child he is...and this goes right along with the discussion I had with Leanne Lacewell about how Brianna and Max are such special, incredibly sweet children...who knew that Liam had wisdom beyond his years to answer why these things happened to the most sweet, beautiful, loving children.
"You know the thing about angels Mommy? 'What?', I replied. Well,God makes you then he puts little girls and boys on earth. Angels without their wings. He watches you grow, how much you love God and how nice you are and your wings grow just a little. When you become everything He wanted you to be, you die and go to Heaven and then he gives you your full angel wings...and you get to keep them forever. " ~Liam~
http://www.caringbridge.org/visit/liamreilly
The Reilly Family is absolutely an inspiration to us and I think of them so often and gain strength from their faith, devotion, and strong dedication to being the best parents!! Please feel free to express your sympathy and prayers on in their journal. You can cut and paste the above link into your browser.
I hope Brianna continues to maintain her close connection with God and so she is able to find comfort in His loving embrace. Last night she said that God told her she can't stay on Earth, but then she also went on to say that God told her that she can't go to heaven either! I felt this was a sign of her waivering in the strong faith she has held onto for so long. Bob and I told her that children, especially those that must carry such heavy burdens and suffer on earth, well, they go straight to heaven. I talked her through the footprints poem again and she said that Jesus was carrying her and telling her it was going to be o.k. She said we were all there walking behind telling her "she's o.k.", "it's o.k.", and then she said that the blessed Mother was waiting in heaven for Jesus. She could feel His hair and His warmth, He was walking barefoot, she could feel the sun, she could hear waves and people telling her she's o.k. and she was smiling and Jesus was smiling. Laying very peaceful in bed, I told her there are more people than our Blessed Mother waiting for Jesus and the people He carries to heaven. For Brianna and I, it would be my dad (her Grandpa Close) who would be one person waiting. She fell asleep within a minute.
Please pray for the Reilly Family. Please pray for Ravyn Finch as she is experiencing a very difficult time right now. Pray for our buddy Max, that he and his family enjoy their time and Max continues to have good days playing with friends and family. Please pray for Brianna so she may continue to stay strong in her faith and feel God's loving embrace. Please pray for all DIPG families dealing with tumor progression and terrible symptoms, and also pray for those who are stable, that their tumors remain stable and leave them symptom free!
"You know the thing about angels Mommy? 'What?', I replied. Well,God makes you then he puts little girls and boys on earth. Angels without their wings. He watches you grow, how much you love God and how nice you are and your wings grow just a little. When you become everything He wanted you to be, you die and go to Heaven and then he gives you your full angel wings...and you get to keep them forever. " ~Liam~
http://www.caringbridge.org/visit/liamreilly
The Reilly Family is absolutely an inspiration to us and I think of them so often and gain strength from their faith, devotion, and strong dedication to being the best parents!! Please feel free to express your sympathy and prayers on in their journal. You can cut and paste the above link into your browser.
I hope Brianna continues to maintain her close connection with God and so she is able to find comfort in His loving embrace. Last night she said that God told her she can't stay on Earth, but then she also went on to say that God told her that she can't go to heaven either! I felt this was a sign of her waivering in the strong faith she has held onto for so long. Bob and I told her that children, especially those that must carry such heavy burdens and suffer on earth, well, they go straight to heaven. I talked her through the footprints poem again and she said that Jesus was carrying her and telling her it was going to be o.k. She said we were all there walking behind telling her "she's o.k.", "it's o.k.", and then she said that the blessed Mother was waiting in heaven for Jesus. She could feel His hair and His warmth, He was walking barefoot, she could feel the sun, she could hear waves and people telling her she's o.k. and she was smiling and Jesus was smiling. Laying very peaceful in bed, I told her there are more people than our Blessed Mother waiting for Jesus and the people He carries to heaven. For Brianna and I, it would be my dad (her Grandpa Close) who would be one person waiting. She fell asleep within a minute.
Please pray for the Reilly Family. Please pray for Ravyn Finch as she is experiencing a very difficult time right now. Pray for our buddy Max, that he and his family enjoy their time and Max continues to have good days playing with friends and family. Please pray for Brianna so she may continue to stay strong in her faith and feel God's loving embrace. Please pray for all DIPG families dealing with tumor progression and terrible symptoms, and also pray for those who are stable, that their tumors remain stable and leave them symptom free!
The Most Difficult Decision - June 23
It has been awhile since the last update and a lot has happened, so we hope you bear with us. At the end of this update we have included a link to the WCIU story by Kyle Porter, titled “Brianna’s Battle.”
We started our vacation with the kids on Friday afternoon. We knew Brianna was struggling with short term memory loss and also struggling physically, but we had no idea that we would witness a very drastic decline in Brianna’s condition and have reality slap us in the face in the middle of our vacation.
After returning home from Children’s Memorial (Monday afternoon), Brianna completed her last week of radiation treatment and rested every day in order to recover and save energy for a trip to the Wisconsin Dells. However, before leaving for the Dells there was one surprise Bob and I planned for the three girls. Bob purchased front row tickets for the Mary Poppins Broadway musical and Brianna (we all) loved every minute of the show!! It was spectacular and brought many smiles to Brianna’s face, which are harder to come by these past few weeks. She did not remember it the next day, but we now live moment to moment. Brianna enjoyed a great day Saturday and her pain was controlled (increasing headaches and nausea.) She was able to be out of the house for most of the day without incident!
Sunday morning proved to be a challenge as her headaches and nausea reached new levels. At this point she was also experiencing increased episodes of complete confusion/dementia. Bob and I woke to a large Tupperware bowl filled with mini-wheat cereal and there were 3 whole peaches thrown in (sticker and all). The night before, she made a concoction of organic brownies with Coco-Pebbles cereal. She apparently forgot she made these as she never actually took a bite out of either. Based on her latest condition, I was seriously contemplating whether or not Brianna and I should go on the trip. We called Dr. Jason to discuss what we should do. We took our time in the morning, waiting for Brianna to feel better after giving increased morphine and a one-time steroid boost. Again, she did well and was able to enjoy the day. Sunday’s dinner was spent in our hotel where Brianna had everyone laughing and she laughed and smiled more on this night than she has over the past several weeks. We had a blast Sunday night as she let out some great belly laughs. We try to keep her calm by listening to her stories and going along with them as best we can.
Monday proved a very difficult day as she has reached a level of delirium…beginning to see people and things that are not there. Brianna is slipping in and out of sleep periods all day and night, making it impossible to get enough rest to function. Because she needs 24/7 attention and assistance, I managed to get 2 hours of sleep last night…in two, 1 hour increments!! The time I spend with her in the middle of the night is incredibly difficult, but also rewarding. This is the time she expresses such deep love and affection. I can’t bear the thought of missing any waking moment with her. I want to laugh, but she tells me over and over that I am pretty and she wants to look just like me when she grows up! Of course, this morning she was rubbing Bob’s head telling him how pretty he was…she didn’t realize that she was in the wrong room!Kaitlyn, Eric, and Haley are witnessing the rapid decline in Brianna’s condition. They are all doing a great job helping out and keeping an eye on her actions, but without any short term memory any direction or advice they give is immediately lost. Kaitlyn always wants to push her in the wheelchair and is becoming more helpful. It must be incredibly difficult for them to witness her condition and see my meltdowns out of Brianna’s sight, but they seem to be holding up pretty well. The first major sign where Haley and Kaitlyn witnessed the severity of Brianna’s condition was when they saw Brianna eat paint at the pottery place thinking her brush was a fork. We were all painting when I noticed she had paint in her mouth. The most heart-breaking moment was watching her struggle to paint a simple cross…she is no longer able to paint and color like she used to…
While we were making our way home from the Dells today, Matt went to meet Dr. Jason in order to review the latest scans. We learned that the cancer has spread throughout the entire brain. Total brain radiation would do more harm than good. We have made the difficult decision to begin transitioning from palliative to hospice care. We said as long as she is strong and willing to fight, we will continue to seek treatment. When you decide to turn to hospice for your child, it’s too much to bear because it is going against every parental instinct, which is to protect and care for your child. You question whether or not your decision is the right one! We have to believe she is in God’s hands and we will trust in Him. Brianna told me 4 nights ago that she had a face to face conversation with God and He asked her how she was doing and told her to keep fighting. On the way home from the Dells today, she told us she had a weird dream describing that whenever she tried to walk she was floating. I feel frightened and comforted at the same time by her “dream.” When Brianna feels frightened I remind her of the Footprints poem and I have her visualize Jesus carrying her and I ask her to describe using her 5 senses. What does she feel, see, hear, smell, taste…it immediately brings her peace.
Kyle Porter did a phenomenal job on Brianna’s story!! I am so pleased with how it turned out. I was nervous about whether or not I would be able to watch the story. If the link doesn’t work, you can go to www.wciu.com and find “Brianna’s Battle” video segment under the Chicago Insider icon. Scroll down to find the video clip. To view the clip please cut and paste the link into your browser.
http://www.wciu.com/video.php?assetID=10000071
We started our vacation with the kids on Friday afternoon. We knew Brianna was struggling with short term memory loss and also struggling physically, but we had no idea that we would witness a very drastic decline in Brianna’s condition and have reality slap us in the face in the middle of our vacation.
After returning home from Children’s Memorial (Monday afternoon), Brianna completed her last week of radiation treatment and rested every day in order to recover and save energy for a trip to the Wisconsin Dells. However, before leaving for the Dells there was one surprise Bob and I planned for the three girls. Bob purchased front row tickets for the Mary Poppins Broadway musical and Brianna (we all) loved every minute of the show!! It was spectacular and brought many smiles to Brianna’s face, which are harder to come by these past few weeks. She did not remember it the next day, but we now live moment to moment. Brianna enjoyed a great day Saturday and her pain was controlled (increasing headaches and nausea.) She was able to be out of the house for most of the day without incident!
Sunday morning proved to be a challenge as her headaches and nausea reached new levels. At this point she was also experiencing increased episodes of complete confusion/dementia. Bob and I woke to a large Tupperware bowl filled with mini-wheat cereal and there were 3 whole peaches thrown in (sticker and all). The night before, she made a concoction of organic brownies with Coco-Pebbles cereal. She apparently forgot she made these as she never actually took a bite out of either. Based on her latest condition, I was seriously contemplating whether or not Brianna and I should go on the trip. We called Dr. Jason to discuss what we should do. We took our time in the morning, waiting for Brianna to feel better after giving increased morphine and a one-time steroid boost. Again, she did well and was able to enjoy the day. Sunday’s dinner was spent in our hotel where Brianna had everyone laughing and she laughed and smiled more on this night than she has over the past several weeks. We had a blast Sunday night as she let out some great belly laughs. We try to keep her calm by listening to her stories and going along with them as best we can.
Monday proved a very difficult day as she has reached a level of delirium…beginning to see people and things that are not there. Brianna is slipping in and out of sleep periods all day and night, making it impossible to get enough rest to function. Because she needs 24/7 attention and assistance, I managed to get 2 hours of sleep last night…in two, 1 hour increments!! The time I spend with her in the middle of the night is incredibly difficult, but also rewarding. This is the time she expresses such deep love and affection. I can’t bear the thought of missing any waking moment with her. I want to laugh, but she tells me over and over that I am pretty and she wants to look just like me when she grows up! Of course, this morning she was rubbing Bob’s head telling him how pretty he was…she didn’t realize that she was in the wrong room!Kaitlyn, Eric, and Haley are witnessing the rapid decline in Brianna’s condition. They are all doing a great job helping out and keeping an eye on her actions, but without any short term memory any direction or advice they give is immediately lost. Kaitlyn always wants to push her in the wheelchair and is becoming more helpful. It must be incredibly difficult for them to witness her condition and see my meltdowns out of Brianna’s sight, but they seem to be holding up pretty well. The first major sign where Haley and Kaitlyn witnessed the severity of Brianna’s condition was when they saw Brianna eat paint at the pottery place thinking her brush was a fork. We were all painting when I noticed she had paint in her mouth. The most heart-breaking moment was watching her struggle to paint a simple cross…she is no longer able to paint and color like she used to…
While we were making our way home from the Dells today, Matt went to meet Dr. Jason in order to review the latest scans. We learned that the cancer has spread throughout the entire brain. Total brain radiation would do more harm than good. We have made the difficult decision to begin transitioning from palliative to hospice care. We said as long as she is strong and willing to fight, we will continue to seek treatment. When you decide to turn to hospice for your child, it’s too much to bear because it is going against every parental instinct, which is to protect and care for your child. You question whether or not your decision is the right one! We have to believe she is in God’s hands and we will trust in Him. Brianna told me 4 nights ago that she had a face to face conversation with God and He asked her how she was doing and told her to keep fighting. On the way home from the Dells today, she told us she had a weird dream describing that whenever she tried to walk she was floating. I feel frightened and comforted at the same time by her “dream.” When Brianna feels frightened I remind her of the Footprints poem and I have her visualize Jesus carrying her and I ask her to describe using her 5 senses. What does she feel, see, hear, smell, taste…it immediately brings her peace.
Kyle Porter did a phenomenal job on Brianna’s story!! I am so pleased with how it turned out. I was nervous about whether or not I would be able to watch the story. If the link doesn’t work, you can go to www.wciu.com and find “Brianna’s Battle” video segment under the Chicago Insider icon. Scroll down to find the video clip. To view the clip please cut and paste the link into your browser.
http://www.wciu.com/video.php?assetID=10000071
The Future is Uncertain - June 18
When we returned home from Children's we knew Brianna would need some extra attention and assistance and thought it would be temporary. However, Brianna of last week compared to Brianna of this week....unrecognizable!! She needs assistance walking, bathing, dressing, getting food, basically any activity requires additional assistance. She is getting her voice back a little bit but it is difficult to understand her sometimes because her words are slurred. She has been awake all day the past few days, but only half-awake as she nods off from time to time.
We have reached an extremely difficult part of this journey. Brianna has not just lost her short term memory, but she has completely lost all sense of reality. I can handle the constant, repetitive questions, but I am having difficulty with the fact she is completely lost in this world. I don't think this has happened to other DIPG children in progression, but this is something that has wiped out my sense of peace in handling our situation.
This morning she woke me up at 4 AM and apologized for ruining our Christmas. I didn't quite understand that was what she said until we came downstairs and she asked where the tree was. She asked me why Aunt Georgia and Uncle Mike were leaving (they were never here), she told me she was sorry she pushed JJ (her cousin) off the bed but she was scared, she told Matt that Haley was at the hospital because she broke her leg, she told the nurse that she had soccer practice yesterday and that she hates soccer...
This is just a sample of some of the comments she made just this morning. She is very irritable already, so to keep her from getting too agitated we go along with her stories. Again, you can choose to laugh or cry, but at this point I am not finding it very amusing and have had my breakdowns. I am trying to find family members to come sit with her for a short period so I can catch a breather and a quick nap.
We do get some laughs though because she still has a quick wit and can make comments or throw zingers out...a talent she only developed since diagnosis. She was never good at making people laugh and never had the ability to throw out zingers...though they are usually at Kaitlyn's expense, it's all in good fun. We are also able to get some laughs out of Brianna, though they are very few and far between. We miss her smile and her laughter so those moements when you are lucky enough to catch it, it's a truly blessed day.
Kaitlyn has been absolutely wonderful lately!! She is out of school and is witnessing the rapid decline in Brianna's health which I think is making it easier on her to see why Brianna has been the focus for so many months. Though they fight constantly and as I pointed out before, they have always had a love/hate relationship, they have expressed real concern and love for each other over the last few weeks. As for Kaitlyn, she is extremely strong and helpful and is taking everything in stride...including allowing Brianna to chide her without getting upset.
Matt and I are trying to decide what to do next and are weighing our options as we are more uncertain now than ever as too what direction we go from here. Brianna will go for another platelet transfusion tomorrow and Bob an I are going to take the 4 kids to the Dells for at least 1 night, hopefully two...so we can enjoy time together without interruption and without worrying about doctors, appointments, cancer, steroids, food, etc. Of course it will be on our minds and Brianna will be very limited in her activity. We hope that we can have a good time and make some memories.
For those of you who do not follow other DIPG sites, I am stealing some good advice given to one of our good friends...
EVERY DAY IS A GOOD DAY, SOME ARE JUST BETTER THAN OTHERS!!
I will chalk today up as a good day. And I will pray for tomorrow to be better.
Finally, I will leave with another Irish saying,
The future is not ours to know, and it may never be-so let us live and give our best and give it lavishly!
We have reached an extremely difficult part of this journey. Brianna has not just lost her short term memory, but she has completely lost all sense of reality. I can handle the constant, repetitive questions, but I am having difficulty with the fact she is completely lost in this world. I don't think this has happened to other DIPG children in progression, but this is something that has wiped out my sense of peace in handling our situation.
This morning she woke me up at 4 AM and apologized for ruining our Christmas. I didn't quite understand that was what she said until we came downstairs and she asked where the tree was. She asked me why Aunt Georgia and Uncle Mike were leaving (they were never here), she told me she was sorry she pushed JJ (her cousin) off the bed but she was scared, she told Matt that Haley was at the hospital because she broke her leg, she told the nurse that she had soccer practice yesterday and that she hates soccer...
This is just a sample of some of the comments she made just this morning. She is very irritable already, so to keep her from getting too agitated we go along with her stories. Again, you can choose to laugh or cry, but at this point I am not finding it very amusing and have had my breakdowns. I am trying to find family members to come sit with her for a short period so I can catch a breather and a quick nap.
We do get some laughs though because she still has a quick wit and can make comments or throw zingers out...a talent she only developed since diagnosis. She was never good at making people laugh and never had the ability to throw out zingers...though they are usually at Kaitlyn's expense, it's all in good fun. We are also able to get some laughs out of Brianna, though they are very few and far between. We miss her smile and her laughter so those moements when you are lucky enough to catch it, it's a truly blessed day.
Kaitlyn has been absolutely wonderful lately!! She is out of school and is witnessing the rapid decline in Brianna's health which I think is making it easier on her to see why Brianna has been the focus for so many months. Though they fight constantly and as I pointed out before, they have always had a love/hate relationship, they have expressed real concern and love for each other over the last few weeks. As for Kaitlyn, she is extremely strong and helpful and is taking everything in stride...including allowing Brianna to chide her without getting upset.
Matt and I are trying to decide what to do next and are weighing our options as we are more uncertain now than ever as too what direction we go from here. Brianna will go for another platelet transfusion tomorrow and Bob an I are going to take the 4 kids to the Dells for at least 1 night, hopefully two...so we can enjoy time together without interruption and without worrying about doctors, appointments, cancer, steroids, food, etc. Of course it will be on our minds and Brianna will be very limited in her activity. We hope that we can have a good time and make some memories.
For those of you who do not follow other DIPG sites, I am stealing some good advice given to one of our good friends...
EVERY DAY IS A GOOD DAY, SOME ARE JUST BETTER THAN OTHERS!!
I will chalk today up as a good day. And I will pray for tomorrow to be better.
Finally, I will leave with another Irish saying,
The future is not ours to know, and it may never be-so let us live and give our best and give it lavishly!
Quick Update - June 15
Brianna had a rough night last night and was up a lot, having to go to the bathroom because of the increased fluids that she has been taking in from her IV. Brianna had a 100.3 fever last night and was given Tylenol to get that down. About 9:30am today she had a fever at that point again. They have infused her with steriods and an antibiotic through her port. She still is fighting this cough but they believe this antibiotic she will go home with should knock that out.
Believe it or not, they are aiming to discharge her in the next hour or so and she will go with me to get her radiation treatment for the day and then head back to Jen's to rest up. I am a little apprehensive about her going home so soon but they assure us that the meds she is going home with should take care of what she needs.
The scans from all the docs here suggest that any CSF (fluid) buildup is not that great to justify doing a surgical procedure at this point. Her memory loss is probably the most troubling thing for Jen and I at this point. It is really startling to talk to her and see the mental lapse of memory. Hopefully going up on the steriod should be good enough to help with that. She won't be quite as high a dose as she was previously at her highest point but hopefully going to 12MG a day should do the trick.
We will check her platelet counts and White blood cell counts today and then again Thursday.
We will keep you updated as stuff progresses. Thanks for all your thoughts and prayers. We feel them.
Matt
Believe it or not, they are aiming to discharge her in the next hour or so and she will go with me to get her radiation treatment for the day and then head back to Jen's to rest up. I am a little apprehensive about her going home so soon but they assure us that the meds she is going home with should take care of what she needs.
The scans from all the docs here suggest that any CSF (fluid) buildup is not that great to justify doing a surgical procedure at this point. Her memory loss is probably the most troubling thing for Jen and I at this point. It is really startling to talk to her and see the mental lapse of memory. Hopefully going up on the steriod should be good enough to help with that. She won't be quite as high a dose as she was previously at her highest point but hopefully going to 12MG a day should do the trick.
We will check her platelet counts and White blood cell counts today and then again Thursday.
We will keep you updated as stuff progresses. Thanks for all your thoughts and prayers. We feel them.
Matt
ER Visit - June 14
Early this morning Brianna woke up with a severe headache, nausea and difficulty breathing (possibly due to the cough she developed over past few days, but you never know for sure!) The ER doctor at Edward Hospital in Naperville decided to contact Children's Memorial to determine what they would like to do. It was decided that she would be transported to Children's Memorial via ambulance as they could best take care of her and evaluate further. Matt drove directly to Children's in order to meet Brianna there as I went back home to get a few things in case she was admitted overnight. I asked her what she wanted me to do and she preferred that I get her notebooks, pens and ipod. I was a little concerned though because with the short term memory loss I wondered if she would get confused or panic in the ambulance if I wasn't there. I informed the paramedics to remind her about the situation if she questioned what was happening.
Dr. Goldman (Children's) reviewed her MRI and chest X-ray and had a neurosurgeon consult to review records to determine if she needed any procedures performed (shunt? / ventriculostomy?) The MRI shows a fairly stable brainstem tumor (they will verify tomorrow), but the nodules on the ventricles have definitely increased in size and there appears to be some fluid putting pressure on the ventricles. The neurosurgeon decided there is no need for a procedure at this point, but the team of doctors and surgeons will meet to discuss her case and evalute further tomorrow. I will be spending the night with Brianna at Children's. We hope to be discharged tomorrow afternoon so she can make it to radiation later in the day. Dr. Goldman said finishing radiation is the priority at this point so we need to do what we can to get her through this last week of treatment.
She is needing more pain medication, but they have not recommended increasing the steroid medication...at least not yet! We will keep you posted as to what the doctors recommend.
Dr. Goldman (Children's) reviewed her MRI and chest X-ray and had a neurosurgeon consult to review records to determine if she needed any procedures performed (shunt? / ventriculostomy?) The MRI shows a fairly stable brainstem tumor (they will verify tomorrow), but the nodules on the ventricles have definitely increased in size and there appears to be some fluid putting pressure on the ventricles. The neurosurgeon decided there is no need for a procedure at this point, but the team of doctors and surgeons will meet to discuss her case and evalute further tomorrow. I will be spending the night with Brianna at Children's. We hope to be discharged tomorrow afternoon so she can make it to radiation later in the day. Dr. Goldman said finishing radiation is the priority at this point so we need to do what we can to get her through this last week of treatment.
She is needing more pain medication, but they have not recommended increasing the steroid medication...at least not yet! We will keep you posted as to what the doctors recommend.
Cancer Drives the Bus - June 13
Yesterday was supposed to be an easy day. Brianna had radiation to the spine at 7:00 AM and an MRI of the brain at 8:30 AM, then home to enjoy a relaxing day. The day was off to a great start as we made it to Winfield and back to Naperville just in time for MRI registration at Edward Hospital. I was able to stay with Brianna until she was sedated and Matt waited for her to finish. In the end, everything was o.k. but it definitely had me frightened as I waited by myself and worried about Brianna’s MRI. Soon, Brianna was back in the room and was feeling good. Matt informed me, however, that her platelets dropped back down to 24 and they were going to keep her for another transfusion. Her white blood cell count also dropped and we will have a visit from the home nurse tomorrow morning so we can learn how to administer a medication through her port that will help bring up the white count. Ugh…nothing is ever easy!!!
Something that prompted the MRI and that has become more troublesome is the loss of short term memory. Brianna is becoming increasingly frustrated about her memory loss as she can’t remember anything she has done throughout the day. It’s very difficult to hear her ask the same questions over and over and for me to try and answer without showing frustration. She continually asks what day it is, what we are doing, where we are going, etc. and she will ask the questions continuously throughout the day, sometimes repeating herself within minutes. She doesn’t remember that Eric and Haley are in Florida with their mom and she continually asks where they are or when they are coming over. Today she asked this question at least 5 times on our way to radiation and she was asking again when we returned home as she wondered where they were. Hopefully, the MRI answers our questions about what could be causing the short term memory loss, and more importantly, tells us what course of action we must take next!
Brianna finishes radiation in 1 week (5 more treatments) and it can’t come soon enough. Though there is a possibility that she could face more radiation to the brain if the cancer has metastasized to parts beyond the brain stem; we will cross that bridge when we get to it. The cancer is in the driver seat forcing us to respond whenever symptoms occur. We had to interrupt the medication (Avastin and CPT-11) in order to focus on the cancer in the spine, beginning radiation immediately. The focus shifted from the head to the spine and now we are forced to look at the head again as she is experiencing a slight increase in headaches and problems with memory. We will review the MRI result with Dr. Jason at our Tuesday appointment.
There are no easy answers and nothing to guide us in this journey except looking at Brianna and how she is doing, listening to doctors’ advice, praying, and making a decision taking all things into consideration. Even if we get back into the driver’s seat, the cancer will hold us hostage and tell us where to go and what to do.Thank you for your continued support and unending prayers. We want to hold up our special friends in prayer. Please pray for “Little Dude,” Max Lacewell and his family as they struggle with another leg in the journey. Also, please pray for Liam Reilly and his family as they are experiencing a very difficult time and are in great need of peace and comfort. All of our DIPG warriors are extraordinary children and their families’ exhibit unbelievable strength and courage. We pray for all who have traveled this path, are currently traveling it, or might face it in the future. God Bless!!
Love,Brianna, Jennifer (mom), Matt (dad) and family
Something that prompted the MRI and that has become more troublesome is the loss of short term memory. Brianna is becoming increasingly frustrated about her memory loss as she can’t remember anything she has done throughout the day. It’s very difficult to hear her ask the same questions over and over and for me to try and answer without showing frustration. She continually asks what day it is, what we are doing, where we are going, etc. and she will ask the questions continuously throughout the day, sometimes repeating herself within minutes. She doesn’t remember that Eric and Haley are in Florida with their mom and she continually asks where they are or when they are coming over. Today she asked this question at least 5 times on our way to radiation and she was asking again when we returned home as she wondered where they were. Hopefully, the MRI answers our questions about what could be causing the short term memory loss, and more importantly, tells us what course of action we must take next!
Brianna finishes radiation in 1 week (5 more treatments) and it can’t come soon enough. Though there is a possibility that she could face more radiation to the brain if the cancer has metastasized to parts beyond the brain stem; we will cross that bridge when we get to it. The cancer is in the driver seat forcing us to respond whenever symptoms occur. We had to interrupt the medication (Avastin and CPT-11) in order to focus on the cancer in the spine, beginning radiation immediately. The focus shifted from the head to the spine and now we are forced to look at the head again as she is experiencing a slight increase in headaches and problems with memory. We will review the MRI result with Dr. Jason at our Tuesday appointment.
There are no easy answers and nothing to guide us in this journey except looking at Brianna and how she is doing, listening to doctors’ advice, praying, and making a decision taking all things into consideration. Even if we get back into the driver’s seat, the cancer will hold us hostage and tell us where to go and what to do.Thank you for your continued support and unending prayers. We want to hold up our special friends in prayer. Please pray for “Little Dude,” Max Lacewell and his family as they struggle with another leg in the journey. Also, please pray for Liam Reilly and his family as they are experiencing a very difficult time and are in great need of peace and comfort. All of our DIPG warriors are extraordinary children and their families’ exhibit unbelievable strength and courage. We pray for all who have traveled this path, are currently traveling it, or might face it in the future. God Bless!!
Love,Brianna, Jennifer (mom), Matt (dad) and family
CT Scan - June 9
*** From this point forward, all updates will be from Brianna's parents. Brianna is unable to write any comments herself. ***
From Jennifer, Brianna's mom:
Brianna is still coloring and doodling constantly. In fact, you might consider buying stock in paper and pen companies since she has filled several notebooks and gone through tons of gel pens!! Come to think of it, buying stock in Walgreens would be wise since we can make a run for prescriptions and other items on almost a daily basis. Her spirit is good and (knock on wood) she hasn’t had any major meltdowns lately. She has been experiencing minor headaches off and on, but never admitted it until a few days ago. Either she doesn’t want to worry us, or the minor pain is something she shakes off based on what she has been through over the last several months…or maybe a combination of the two. She is holding her own and is keeping herself occupied with coloring. She has minimal complaints except for being hungry all of the time!
Something that has concerned us lately is her loss of short-term memory. Bob and I noticed a definite change about 1 ½ weeks ago. I first noticed two weeks ago that she would ask the same questions or repeat stories that she has shared numerous times. We have been waking up early to go to radiation for four weeks and she asks where we are going and what we are doing. It has increased to the point that late Sunday morning, on the way to her sister’s volleyball game, she asked if we were going to mass. We reminded her we went last night. Then I asked her if she remembered what we did following mass and she did not remember going out to eat. In the last two days she has become aware of the fact she is having difficulty remembering and shows only a little frustration over it. This is also upsetting and frustrating for me, but to keep my spirits up I have to chuckle at some of the things she has done. For example, putting ketchup from the fridge into the pantry, thanking me for letting her use my (actually her) iPod, and placing the entire hand mixer into the kitchen sink (cord and all). We have been keeping Dr. Jason informed about these changes and since it appears to go beyond effects from medicine or exhaustion he decided to order a CT scan.
Today’s CT scan showed that the primary tumor (on the brainstem) was stable for the most part. The other smaller tumor nodules appear to have grown slightly larger but nothing too alarming from the CT scan. The ventricles, however, do look enlarged and are most likely showing increased cranial pressure which can explain some of the headaches Brianna has experienced. We will be doing an MRI in the next few days to determine the exact size of the tumor on the pons and the other nodules and we will be looking closer to see if there is more fluid buildup in the ventricles in the brain.Fluid buildup can create pressure on the brain therefore causing headaches and nausea. That can be remedied with either increasing her steroids (which is not a pleasant thought as we have weaned down to half of the dosage from four weeks ago) or possibly having a surgical procedure with a shunt placed in her head to drain the fluid. We will know a lot more after the MRI is complete.Her platelet count from yesterday’s blood draw was at 82, which means that Brianna (for now) does not have to have a transfusion! That was quite a relief! Her neutrophil levels were good (those are the cells that help fight infection). Dr. Fangusaro said that he feels her exam from today was pretty good despite all the rough stuff she has gone through over the last week. Her strength is good and her energy level was good today. Her energy level can change from day to day as yesterday she slept for most of the day, including through the nurse visit and blood draw.We look forward to the MRI so we can get a more exact picture of what’s going on. It was a relief to hear the CT scan results because we did have concern that we had been focusing so much on the tumor spreading to the spine that we weren’t treating the primary tumor in the brain. The brainstem tumor looks fairly stable, but back at St. Jude in April we learned that a few nodules popped up in other parts of the brain. Those nodules where the cancer has spread might actually be able to be given radiation. (Yes, we are possibly facing more radiation…but that is o.k. if it provides relief and can take care of the other tumors in the brain.) Her brainstem has taken as much radiation as possible, but after consulting with Dr. Goldman, Dr. Fangusaro felt that might be an option to radiate the other parts of her brain. Of course, we will wait to see the MRI results first.
We will keep you updated. Thank you for your unbelievable support and continued prayers. We are extremely grateful and are so blessed to have such a wonderful, supportive community of support! We remain strong in faith and continue to pray for all of our DIPG warrior friends. Please lift Liam and Ravyn up in prayer as they are having a difficult time right now and their families need to be blessed with God's grace and mercy. Also, continue to pray for our friends Max, Kole, Caleb, Andrew, & Carter.
God Bless!
From Jennifer, Brianna's mom:
Brianna is still coloring and doodling constantly. In fact, you might consider buying stock in paper and pen companies since she has filled several notebooks and gone through tons of gel pens!! Come to think of it, buying stock in Walgreens would be wise since we can make a run for prescriptions and other items on almost a daily basis. Her spirit is good and (knock on wood) she hasn’t had any major meltdowns lately. She has been experiencing minor headaches off and on, but never admitted it until a few days ago. Either she doesn’t want to worry us, or the minor pain is something she shakes off based on what she has been through over the last several months…or maybe a combination of the two. She is holding her own and is keeping herself occupied with coloring. She has minimal complaints except for being hungry all of the time!
Something that has concerned us lately is her loss of short-term memory. Bob and I noticed a definite change about 1 ½ weeks ago. I first noticed two weeks ago that she would ask the same questions or repeat stories that she has shared numerous times. We have been waking up early to go to radiation for four weeks and she asks where we are going and what we are doing. It has increased to the point that late Sunday morning, on the way to her sister’s volleyball game, she asked if we were going to mass. We reminded her we went last night. Then I asked her if she remembered what we did following mass and she did not remember going out to eat. In the last two days she has become aware of the fact she is having difficulty remembering and shows only a little frustration over it. This is also upsetting and frustrating for me, but to keep my spirits up I have to chuckle at some of the things she has done. For example, putting ketchup from the fridge into the pantry, thanking me for letting her use my (actually her) iPod, and placing the entire hand mixer into the kitchen sink (cord and all). We have been keeping Dr. Jason informed about these changes and since it appears to go beyond effects from medicine or exhaustion he decided to order a CT scan.
Today’s CT scan showed that the primary tumor (on the brainstem) was stable for the most part. The other smaller tumor nodules appear to have grown slightly larger but nothing too alarming from the CT scan. The ventricles, however, do look enlarged and are most likely showing increased cranial pressure which can explain some of the headaches Brianna has experienced. We will be doing an MRI in the next few days to determine the exact size of the tumor on the pons and the other nodules and we will be looking closer to see if there is more fluid buildup in the ventricles in the brain.Fluid buildup can create pressure on the brain therefore causing headaches and nausea. That can be remedied with either increasing her steroids (which is not a pleasant thought as we have weaned down to half of the dosage from four weeks ago) or possibly having a surgical procedure with a shunt placed in her head to drain the fluid. We will know a lot more after the MRI is complete.Her platelet count from yesterday’s blood draw was at 82, which means that Brianna (for now) does not have to have a transfusion! That was quite a relief! Her neutrophil levels were good (those are the cells that help fight infection). Dr. Fangusaro said that he feels her exam from today was pretty good despite all the rough stuff she has gone through over the last week. Her strength is good and her energy level was good today. Her energy level can change from day to day as yesterday she slept for most of the day, including through the nurse visit and blood draw.We look forward to the MRI so we can get a more exact picture of what’s going on. It was a relief to hear the CT scan results because we did have concern that we had been focusing so much on the tumor spreading to the spine that we weren’t treating the primary tumor in the brain. The brainstem tumor looks fairly stable, but back at St. Jude in April we learned that a few nodules popped up in other parts of the brain. Those nodules where the cancer has spread might actually be able to be given radiation. (Yes, we are possibly facing more radiation…but that is o.k. if it provides relief and can take care of the other tumors in the brain.) Her brainstem has taken as much radiation as possible, but after consulting with Dr. Goldman, Dr. Fangusaro felt that might be an option to radiate the other parts of her brain. Of course, we will wait to see the MRI results first.
We will keep you updated. Thank you for your unbelievable support and continued prayers. We are extremely grateful and are so blessed to have such a wonderful, supportive community of support! We remain strong in faith and continue to pray for all of our DIPG warrior friends. Please lift Liam and Ravyn up in prayer as they are having a difficult time right now and their families need to be blessed with God's grace and mercy. Also, continue to pray for our friends Max, Kole, Caleb, Andrew, & Carter.
God Bless!
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