A Very Difficult Update - April 10

Update from Brianna's Dad Matt:


I am going to be brief with this update as much as I can....

Brianna and Jennifer arrived Tuesday and I arrived Wednesday and we had several appointments including a physical which Brianna passed with flying colors. Dr. Baker had even seen her in the hallway and commented on how great she looked!
That evening we went out to eat with our friends the Millers ( Scottie and Lori are the parents of Kole Miller). Brianna had a great time having fun with Kole and they even exchanged birthday gifts. It was a fun time to spend with them and Brianna had fun playing with Kole and it was a great evening! We had just heard about Kole's stable scan and we were so happy for Kole.
The next day Brianna had her labs drawn and went into sedation for the MRI around 9:45. I went back with her and she was quite happy and laughing! She was knocked out mid-sentence while talking to the nurses which was quite funny to see.
Jennifer and I were waiting for an eternity for the results and I finally got the results. It was not good news. Dr. Baker called and said that the primary (original tumor) had grown back to almost is orginal size when she was diagnosed back in October. Futhermore she had a few nodules that had formed on the ventricles and some brain tissue that they feel was the cause of her headaches. They originally felt that something else was the cause of her headaches because they didn't see any spread of the disease. That has obviously changed.

Needless to say Jennifer and I are speechless. This is not what we had expected at all. Some of the research I have done over the last couple months will have to be wrapped up over the next week or so and we will be trying to get an appointment with Chicago Children's Memorial Hospital to see what they can do closer to home.

Clinical trials open and close with great frequency. Sometimes there is nothing they can do when a child presents progression because trials open and close all the time. So we will continue the search to find the next treatment. In the meantime Brianna will have an in home nurse that will start coming to the house so she can start developing a relationship with an at home nurse.
Brianna is on a low dose of the steriod but that is to control any swelling and pain that she may be experiencing. She also has some meds to help with her pain if she has any more than the steriods can handle.
We will be exploring all options and we hope to have more answers after we meet with Chicago Children's Memorial hospital sometime this week.
Please keep Brianna and all the DIPG kids in your prayers including Caleb Spady and Andrew Smith and Max Lacewell. All three kids got similar news lately and we all pray for their situations to bring relief to their pain and find comfort.

Brianna is a great kid... one of the bravest I have ever seen. She has taught me alot from the first day she was born. She will continue to teach me.
Please visit three worthwile foundations to learn more about how you can help! ( www.justonemoreday.org) ( wwww.icouldbeyourchild.org) and ( www.thecurestartsnow.org) I know the organizers of all these organizations and I sit on the board of Just One More Day. All of these incredible people that run these foundations are dedicated and caring people that have been affected by this horrible disease. Please visit their websites to learn more about how you can help.
Also please continue to go to www.curebrianna.com to learn more about how you can help Brianna personally. This is going to be new territory for us and all the support and love you can give is much appreciated!
Thanks for checking in.... I know you all have been anxious to hear and thats is why I wanted to take time to do this update.
We can't thank you all enough....
We love you all.
With Hope,

Matt, Jennifer and Brianna