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!