Just Tell Me What I Gotta Do - April 30

My parents told me that the cancer is in my spine and I have to have radiation and chemotherapy for a few weeks. It isn't bothering me too much cause I can still go up and down stairs and walk and run a little bit. Sometimes my back hurts now instead of my head. I get a little more of the steroid medicine so I get hungry more. Sometimes I get to have regular food instead of my special diet. I guess I'm getting used to the organic weird stuff cause when I eat regular food I don't feel so good. I told Mom I would listen to her from now on cause she warned me that I wouldn't feel good if I ate regular food. She was right! My mom wants to write about my treatments so that's all from me. Thank you everybody for all your prayers.
Love,
Bree

Note from Mom Jennifer:
"JUST TELL ME WHAT I GOTTA DO!" Brianna's words once again after we told her that the cancer spread to the spine and she would have to undergo 4-6 weeks radiation and take a new chemotherapy medicine. She once again took the news better than we would have expected and that allowed us to breathe a sigh of relief as we felt like we were re-living the original diagnosis all over again. The MRI showed that the cancer spread through the entire spine and the doctors are amazed once again that Brianna's outward appearance shows no signs of the seriousness of the MRI results. God is blessing Brianna with unbelievable strength and courage as she is still bouncing up and down stairs, walking, and even running/jogging for a little bit (like to the neighbors house) Her back does give her problems and has taken place of any headache she experienced previously. We increased her steroid medication once again and I think we are beginning to see a slight increase in her appetite. She has not been complaining of her diet as much since we decided to allow an occassional "break." She has been so completely miserable for so long and no matter how many times I found a healthy alternative she had convinced herself that organic tastes terrible (even though it is the opposite). Since we let up a little bit and give her some ownership over her diet she actually makes the healthy choice most of the time. She has also discovered that her body is used to the healthy, organic, limited sugar and dairy diet so when she tries to eat anything else she feels terrible. I warned her on two occassions and sure enough, she felt so bad she assured me she would listen to me from now on...
We had a great religious retreat last weekend and had a special meeting with Mother Nadine from the Intercessors of the Lamb. We left with a wonderful peace after Mother Nadine took time to pray for us and share her insights. Though Brianna was only able to make it through the first half of the day Saturday she did pick up enough to ask questions and share what she learned from the experience. At the retreat I had a flashback to one of the best memories of Brianna at 3 or 4 years old. She was supposed to be taking a nap on my bed but I heard her talking and playing around. I decided I would crack the door and peek to see what she was up to. She was sitting on her knees with a baby doll blanket draped over her head. She was holding her baby doll wrapped in "swaddling clothes" and was singing "Away in a Manger." Her pre-school class was learning the song for their Christmas program and Brianna decided she would practice the song while pretending to be Mary. No one had taken on that role so it was beautiful to see her acting out the song. Of course the video camera was not working...just liked it wasn't working when she fell asleep on the toilet at 3 years old!! (Don't let her know I shared that-we have a snapshot to prove it!)
Brianna spent several days sleeping and was having a difficult time adjusting to a new medication schedule and new treatment. However, the past three days she has been in better spirits and has had more energy and less pain. Today we went out to lunch and a movie with Dr. Ellison and her four kids (Aidan, Talia, Logan, and Gavin.) Brianna and Kaitlyn love little kids and enjoyed giving them special gifts. Brianna created a mermaid painting titled "Talia," (Dr. Ellison's daughter's name) and she did a beautiful job! Talia was very excited and we were able to take photos of the excitement and of Brianna autographing the creation for Talia. Brianna created the painting with pink and purple which will be the colors in Talia's new bedroom. We found out that Logan said, "Well, I like Nemo." and Aidan said, "I like Star Wars." Looks like the orders are going to start piling up. We must thank Dr. Ellison for a wonderful day as Brianna was out from 10:30-4:00 feeling great and loving the company!!
Tomorrow we are meeting with the DuPage Oncology Radiologists out of Central DuPage Hospital in Wheaton, IL. They mostly work with adults, but have also worked with children. Our home nurse and the doctor we are assigned for home health both agree that this recommendation wouldn't happen unless they were 100% comfortable in their ability to treat Brianna. This is wonderful news as it will save us a daily commute to Northwestern as radiation treatments are Monday-Friday for 4-6 weeks.
I want to thank Lori Miller (Kole's mother-our little buddy at St. Jude) for the proverb she emailed to me after receiving the latest round of news. I am including it for you as it gave me peace once again that we can continue to remain strong and hopeful throughout our next uphill battle. Brianna, Kaitlyn and I have been listening to a Miley Cyrus song that has great meaning to us right now...just like the Jonas Brothers song, "Little Bit Longer." Miley's song is titled, "Climb." The lyrics are perfect!! Thank you for your support and please continue to pray for all of our DIPG warriors (Kole, Max, Liam, Caleb, Andrew, and many others)
Trust in the Lord with all your heart and lean not on your own understanding. Proverbs 3:5
God Bless!

Brianna's Family