Medical update from Brianna's Mom Jennifer:
Thank you for all your prayers…they were definitely answered! The platelet transfusion went great! If Brianna was nervous she didn’t show it, she was a real trooper! I felt my anxiety level increasing once they started giving her the platelets. I found myself constantly looking at my watch to see if she could make it past the 5-10 minutes when she reacted last time. They gave her plenty of medication and although it shouldn’t matter with platelet transfusions, they made sure that the blood type was an exact match just to be safe. We will check her numbers again on Monday to determine whether or not she will need another transfusion on Tuesday. We will push through to finish the last two weeks of radiation and support her with platelets whenever needed.We left Children’s around 1:30 and Brianna slept in the car the entire ride home then immediately went back to sleep when we arrived home. Her nice long nap allowed her to be energized enough to attend the Relay for Life event. We arrived at 5 PM and she went until 9:30 PM when she finally hit a brick wall. I thought we would be lucky to get 2 hours out of her and pictured her sitting in a chair or hiding in a tent, but she enjoyed having friends and family push her around the track in her wheelchair!
The weather was perfect, but what made the day even better was the fact we were able to meet so many people who have been supporting us in this journey. We saw people who we did not recognize wearing Brianna’s Brigade t-shirts. We were so overwhelmed by the number of people introducing themselves and are thrilled that they took the time so we can put names to faces. Thank you to everyone who came out to support Brianna and the American Cancer Society. Brianna (and her entire family) were so excited to see the number of people come out to support her… all gathered in one place wearing Brianna’s Brigade shirts.
A huge highlight of the day was seeing “Little Dude,” Max Lacewell himself, along with his parents David and Leanne, and sister Addie. This was the first time we were all gathered in one place at one time! Max Lacewell’s “Little Dude’s DIPG Warriors” rocked in fundraising and overall support. Brianna and Max have only met a few times but they have a unique bond in battling a devastating disease. I recall the first time I met Leanne and in the course of our conversation we learned that we already had the answer as to “Why?” Max and Brianna. They are two of the most loving, caring children who shine above all others in their ability to connect with people. Whether it is their smile, laugh, charm, or their unique ability to show compassion and empathy at such a young age…we realized that is precisely why they are chosen to endure such a difficult journey. Seeing the number of people supporting Max and Brianna proves they have touched more hearts than anyone can imagine. We are all God’s children first and as parents we are given the privilege of raising these beautiful children. How blessed are we to have Max and Brianna because through them we have come to know so many extraordinary people who display the deepest love and compassion. The communities that support Max and Brianna reach far and wide and we will forever be grateful for their willingness to share in our journey. Please say a prayer for all who have been affected by cancer (past and/or present) especially young children and their families! Thank You & God Bless!
Love,
Brianna's Family
Monday, June 8, 2009
Platelet Transfusion - June 4
Medical Information from Mom Jennifer:
Good news to report...our friend Kole Miller returned to St. Jude a week ahead of schedule as they suspected possible tumor progression, but the MRI shows that his tumor remains stable! Thanks be to God!
We are asking for a few extra prayers tonight and tomorrow as Brianna will undergo another platelet transfusion tomorrow morning. Her number dropped from 35 down to 24 and Dr. Jason feels it is very important to get the transfusion done asap. We will miss radiation tomorrow morning so we can head to Children's ahead of rush hour...hopefully. She will be given steroids and Benadryl prior to receiving the platelets and they will watch her closely throughout the transfusion.
Hopefully, everything will run smoothly so we may return home around lunchtime. I will be busy preparing for the Relay for Life event and setting up our campsite. We would like to have Brianna get the rest she needs so she can enjoy her lap(s) around the track and visits from friends and family who come out to support her. Brianna and Kaitlyn were able to meet my girlfriend from high school, along with her children, as she delivered some equipment and golf balls for the event! Thank you Mike and Greta for the HUGE box of golf balls and for letting us borrow the net and putting green. Stevie rocks!! He did a great job helping Kaitlyn with the golf balls....so cute!!
Thank you for your continued support and prayers!! Please continue to pray for all children fighting pediatric cancer, especially our DIPG warriors. Max Lacewell and family can use some extra prayers as they begin another treatment. Liam Reilly and family can use extra prayers for comfort and peace during a very difficult time. We are so inspired by the strength and courage displayed by DIPG families and find comfort in the fact we are not alone in this very difficult journey. God Bless!
Brianna's Family
Good news to report...our friend Kole Miller returned to St. Jude a week ahead of schedule as they suspected possible tumor progression, but the MRI shows that his tumor remains stable! Thanks be to God!
We are asking for a few extra prayers tonight and tomorrow as Brianna will undergo another platelet transfusion tomorrow morning. Her number dropped from 35 down to 24 and Dr. Jason feels it is very important to get the transfusion done asap. We will miss radiation tomorrow morning so we can head to Children's ahead of rush hour...hopefully. She will be given steroids and Benadryl prior to receiving the platelets and they will watch her closely throughout the transfusion.
Hopefully, everything will run smoothly so we may return home around lunchtime. I will be busy preparing for the Relay for Life event and setting up our campsite. We would like to have Brianna get the rest she needs so she can enjoy her lap(s) around the track and visits from friends and family who come out to support her. Brianna and Kaitlyn were able to meet my girlfriend from high school, along with her children, as she delivered some equipment and golf balls for the event! Thank you Mike and Greta for the HUGE box of golf balls and for letting us borrow the net and putting green. Stevie rocks!! He did a great job helping Kaitlyn with the golf balls....so cute!!
Thank you for your continued support and prayers!! Please continue to pray for all children fighting pediatric cancer, especially our DIPG warriors. Max Lacewell and family can use some extra prayers as they begin another treatment. Liam Reilly and family can use extra prayers for comfort and peace during a very difficult time. We are so inspired by the strength and courage displayed by DIPG families and find comfort in the fact we are not alone in this very difficult journey. God Bless!
Brianna's Family
A Very Long Day - June 2
Today was really hard so Mom is going to tell you what happened.
Love,
Bree
Note from Mom Jennifer:
Today consisted of Brianna’s radiation treatment (7 AM) and her weekly visit to Children’s Memorial (left at 9 AM). We did not return home until 8 PM! Kyle, the reporter from WCIU, joined us today at Children’s to continue working on Brianna’s story.
The visit to Children’s was for her normal check-up (blood work, exam, and meeting with Dr. Jason) and she was going to receive an antibiotic through an IV as a preventive treatment. We didn’t know it at the time but our day would prove to be a tough one. If her blood work came back with decent counts she was going to start up on the IV chemo infusion (Avastin). Last week we learned that her platelets dropped from 331 down to 85 (Normal range is 150-450, too low can lead to excessive bleeding since platelets help with clotting; too high and dangerous blood clots result). Today her platelets dropped down to 35 so they decided to do a platelet transfusion. She will be tested again in a couple of days. Since she is undergoing radiation treatment to the spine her ability to produce platelets and maintain levels is hindered.
After Brianna was infused with the antibiotic they set up the platelet transfusion. We were told that there was a chance of an allergic reaction or other reaction and it could range from mild to severe. It is standard of care for patients to receive platelets without any pre-medication. The nurses and doctors wait to see how the patient will tolerate, or if they can tolerate the transfusion, and adjust accordingly. In Brianna’s case, it only took about 5-10 minutes to learn she had a severe reaction to the platelets. I called a nurse when she began to have difficulty breathing. Within 1-2 minutes there were 3 nurses and a doctor giving her various medications and oxygen. This experience scared Brianna so much she began to panic and it took Bob and I, along with the constant presence of the doctor and nurses, over an hour to calm her down. Dr. Jason was called immediately. Our goal is to avoid any more attempts at platelet transfusion (20 or below leaves us no option) but if we must, she will be pre-medicated with steroids, Benadryl, etc. in order to avoid any similar reaction. We are holding her chemo medication for the next few evenings to see if her number goes up. I should add that Bob and I were very impressed with the reaction and response by the nurses and doctors….it definitely left us feeling she is in great hands!
After a long day and very scary experience, Bob and I decided to take Brianna to Greektown for dinner. She thanked us profusely and was in no hurry to leave as she continued sketching in her journal. I believe she is on her 4th large notebook for journaling, sketching, etc.
If anyone happens to be in the Naperville area (Neuqua Valley H.S.) on Friday night, feel free to stop by and say hello! Brianna’s Brigade is participating in the American Cancer Society’s Relay for Life event. Our theme is golf because coloring/labeling cancer golf balls and driving the golf balls seems to be a big hit. Our two phrases: “Driving Out Cancer” & “PUTTing An End To Cancer” focuses our attention on allowing individuals to purchase golf balls that they can decorate or label for any cancer they wish to PUTT an end to, or DRIVE away…it is a huge stress reliever and we hope others will think so too!!
THANK YOU---For your unending support and prayers! We are incredibly grateful to you all!!
Brianna's Family
Love,
Bree
Note from Mom Jennifer:
Today consisted of Brianna’s radiation treatment (7 AM) and her weekly visit to Children’s Memorial (left at 9 AM). We did not return home until 8 PM! Kyle, the reporter from WCIU, joined us today at Children’s to continue working on Brianna’s story.
The visit to Children’s was for her normal check-up (blood work, exam, and meeting with Dr. Jason) and she was going to receive an antibiotic through an IV as a preventive treatment. We didn’t know it at the time but our day would prove to be a tough one. If her blood work came back with decent counts she was going to start up on the IV chemo infusion (Avastin). Last week we learned that her platelets dropped from 331 down to 85 (Normal range is 150-450, too low can lead to excessive bleeding since platelets help with clotting; too high and dangerous blood clots result). Today her platelets dropped down to 35 so they decided to do a platelet transfusion. She will be tested again in a couple of days. Since she is undergoing radiation treatment to the spine her ability to produce platelets and maintain levels is hindered.
After Brianna was infused with the antibiotic they set up the platelet transfusion. We were told that there was a chance of an allergic reaction or other reaction and it could range from mild to severe. It is standard of care for patients to receive platelets without any pre-medication. The nurses and doctors wait to see how the patient will tolerate, or if they can tolerate the transfusion, and adjust accordingly. In Brianna’s case, it only took about 5-10 minutes to learn she had a severe reaction to the platelets. I called a nurse when she began to have difficulty breathing. Within 1-2 minutes there were 3 nurses and a doctor giving her various medications and oxygen. This experience scared Brianna so much she began to panic and it took Bob and I, along with the constant presence of the doctor and nurses, over an hour to calm her down. Dr. Jason was called immediately. Our goal is to avoid any more attempts at platelet transfusion (20 or below leaves us no option) but if we must, she will be pre-medicated with steroids, Benadryl, etc. in order to avoid any similar reaction. We are holding her chemo medication for the next few evenings to see if her number goes up. I should add that Bob and I were very impressed with the reaction and response by the nurses and doctors….it definitely left us feeling she is in great hands!
After a long day and very scary experience, Bob and I decided to take Brianna to Greektown for dinner. She thanked us profusely and was in no hurry to leave as she continued sketching in her journal. I believe she is on her 4th large notebook for journaling, sketching, etc.
If anyone happens to be in the Naperville area (Neuqua Valley H.S.) on Friday night, feel free to stop by and say hello! Brianna’s Brigade is participating in the American Cancer Society’s Relay for Life event. Our theme is golf because coloring/labeling cancer golf balls and driving the golf balls seems to be a big hit. Our two phrases: “Driving Out Cancer” & “PUTTing An End To Cancer” focuses our attention on allowing individuals to purchase golf balls that they can decorate or label for any cancer they wish to PUTT an end to, or DRIVE away…it is a huge stress reliever and we hope others will think so too!!
THANK YOU---For your unending support and prayers! We are incredibly grateful to you all!!
Brianna's Family
Medieval Times - June 1
Hi -
I really had a great weekend. We went to Medieval Times on Saturday and it was really fun. I LOVED the food but it was kind of gross eating with my hands. LOL
I was supposed to go to church on Sunday but I didn't sleep very much Friday or Saturday because of the medicine I take and after breakfast my stomach hurt so Mom let me go back to bed. I felt a little better after I slept. After lunch I felt pretty good again and I got to go to the mall to get my nails done. That was a treat. Then we went to the pet store at the mall and I got to play with one. It was really cute.
I still have some more radiation but you know I don't like all that stuff so I'm gonna let Mom tell about it.
Thanks for reading and sending all your love and prayers,
Bree
Note from Dad Matt:
Brianna has some more radiation treatments to go and is still taking the Temodar along with the pain and nausea medications and has tolerated them quite well. Tomorrow (Tuesday) she will go into Children's for her normal checkup. She will get her blood drawn first so that they can check blood levels and see if she might be able to go back on the Avastin. If her levels are questionable then she will get the Pantanamine antibiotic infused. (She will get that once a month via her port.) Then she might have to wait for the Avastin until the blood levels are good enough to resume. We hope that her levels are good enough today to resume.
She is continuing to wean off the steriods little by little and hopefully that can continue as that is the main reason for her inability to sleep through the night. She has been and continues to be a trooper and is always doodling in her notebooks and watching TV and taking naps as she gets tired throughout the day.
This weekend starting Friday afternoon we have the American Cancer Society's Relay For Life. Jennifer is working really hard to organize this thing and I won't steal her thunder as I will let her explain that in the next update. We have a link on the www.curebrianna.com webpage if you would like to support us in this effort. Just go to the GET INVOLVED tab on the site and the link is there!
Please keep Max, Kole, Alexis, Andrew, Ravyn, Caleb and all the other DIPG warriors in your thoughts and prayers. Brianna's Brigade will be thinking of them all night next Friday into Saturday as we participate in the Relay for Life!!!!
Matt, Jennifer, Brianna and the rest of the gang
I really had a great weekend. We went to Medieval Times on Saturday and it was really fun. I LOVED the food but it was kind of gross eating with my hands. LOL
I was supposed to go to church on Sunday but I didn't sleep very much Friday or Saturday because of the medicine I take and after breakfast my stomach hurt so Mom let me go back to bed. I felt a little better after I slept. After lunch I felt pretty good again and I got to go to the mall to get my nails done. That was a treat. Then we went to the pet store at the mall and I got to play with one. It was really cute.
I still have some more radiation but you know I don't like all that stuff so I'm gonna let Mom tell about it.
Thanks for reading and sending all your love and prayers,
Bree
Note from Dad Matt:
Brianna has some more radiation treatments to go and is still taking the Temodar along with the pain and nausea medications and has tolerated them quite well. Tomorrow (Tuesday) she will go into Children's for her normal checkup. She will get her blood drawn first so that they can check blood levels and see if she might be able to go back on the Avastin. If her levels are questionable then she will get the Pantanamine antibiotic infused. (She will get that once a month via her port.) Then she might have to wait for the Avastin until the blood levels are good enough to resume. We hope that her levels are good enough today to resume.
She is continuing to wean off the steriods little by little and hopefully that can continue as that is the main reason for her inability to sleep through the night. She has been and continues to be a trooper and is always doodling in her notebooks and watching TV and taking naps as she gets tired throughout the day.
This weekend starting Friday afternoon we have the American Cancer Society's Relay For Life. Jennifer is working really hard to organize this thing and I won't steal her thunder as I will let her explain that in the next update. We have a link on the www.curebrianna.com webpage if you would like to support us in this effort. Just go to the GET INVOLVED tab on the site and the link is there!
Please keep Max, Kole, Alexis, Andrew, Ravyn, Caleb and all the other DIPG warriors in your thoughts and prayers. Brianna's Brigade will be thinking of them all night next Friday into Saturday as we participate in the Relay for Life!!!!
Matt, Jennifer, Brianna and the rest of the gang
Subscribe to:
Posts (Atom)
