Back to Children's Memorial - April 14

Note from Mom Jennifer:


Tomorrow morning (later this morning) we have an appointment at Children's Memorial-Chicago and hope to learn more about any open trials they have for progressive DIPG. Since we were told the news last Thursday it has been a rough road as we try to regain focus on the next leg of our journey. I admit that I am dumbfounded watching Brianna as her appearance, energy, strength, etc. have much improved, yet we received news that no parent should ever have to hear and for the first time we were given a timeline that we will once again choose to ignore.
Matt can fill you in about the research but my focus is on taking care of Brianna on a daily basis. We have decided that Brianna will no longer attend school (she happily agreed) and will receive homebound instruction (hopefully from Mrs. Romano) as there is a possibility of experiencing a seizure. My goal now is to figure out how to keep her busy enough to not allow her time to worry about her tumor. She knows the tumor is growing and that we are going to try to find a new medicine. She is so glad she no longer has to endure the daily, liquid chemo medicine (we opted to call it crap) that she matter-of-factly states, "The tumor is growing, but at least I don't have to take the crap medicine anymore." Since she is older than most kids that were on the trial she was asked to describe or compare what the medicine tasted like and she said, "nail polish remover or dirty sink water." The doctor said the only other description of the taste was a boy who said, "poop" so I guess we gave the med the right nickname.

The kids enjoyed the holiday while the adults did their best to try to forget about the recent news. I continue to watch her and wonder how she could be so sick when she looks so good! The only thing we have noticed lately is that she seems to become easily fatigued. Another reason why I want to keep her busy, but not push too hard so that she experiences any other symptoms.

We had two things take place yesterday afternoon, the first of which I dreaded and the other I will speak about in a minute. We were told to begin to establish a relationship with a 'hospice' nurse so that Brianna would be comfortable. Though I had to listen and answer questions I don't think I got anything out of the conversation except that we are not considered 'hospice' rather 'pallative'. The difference is that we are still seeking or continuing radiation or chemotherapy treatments and this type of care allows a nurse to come to the home and for us to have access to immediate care at home rather than having to run Brianna to numerous appointments and ER visits. They also have social workers, chaplains, etc. available. We are not giving up the fight and though I am exhausted and drained in every way, I have a HUGE support network to continue to offer words of encouragement and hope. Thank you everyone for your wonderful, kind words and for the conversations, either in person, phone, email!!

The highlight of Monday afternoon was when I took the girls to meet Brianna's teacher at Color Me Mine. Ms. B wanted to treat them for their birthday gifts. Brianna chose a penguin, Kaitlyn a set of coasters, while I opted out...I have learned from experience that Kaitlyn will always ask for help finishing a project. This was a wonderful idea as WE HAD A BLAST sharing stories and getting a chance to take our minds off of her illness. Thank you Ms. B!!

We want to thank you for your continued prayers and support! I noticed that tons of people joined our carepage Monday night and I want to let them know that we appreciate their support...I was shocked watching the visitor total run up...it went on for a few hours!! It did my heart well to know so many people are checking on Brianna! God Bless!!

Love, Brianna's Mom Jennifer