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!
Thursday, July 9, 2009
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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