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
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