When we returned home from Children's we knew Brianna would need some extra attention and assistance and thought it would be temporary. However, Brianna of last week compared to Brianna of this week....unrecognizable!! She needs assistance walking, bathing, dressing, getting food, basically any activity requires additional assistance. She is getting her voice back a little bit but it is difficult to understand her sometimes because her words are slurred. She has been awake all day the past few days, but only half-awake as she nods off from time to time.
We have reached an extremely difficult part of this journey. Brianna has not just lost her short term memory, but she has completely lost all sense of reality. I can handle the constant, repetitive questions, but I am having difficulty with the fact she is completely lost in this world. I don't think this has happened to other DIPG children in progression, but this is something that has wiped out my sense of peace in handling our situation.
This morning she woke me up at 4 AM and apologized for ruining our Christmas. I didn't quite understand that was what she said until we came downstairs and she asked where the tree was. She asked me why Aunt Georgia and Uncle Mike were leaving (they were never here), she told me she was sorry she pushed JJ (her cousin) off the bed but she was scared, she told Matt that Haley was at the hospital because she broke her leg, she told the nurse that she had soccer practice yesterday and that she hates soccer...
This is just a sample of some of the comments she made just this morning. She is very irritable already, so to keep her from getting too agitated we go along with her stories. Again, you can choose to laugh or cry, but at this point I am not finding it very amusing and have had my breakdowns. I am trying to find family members to come sit with her for a short period so I can catch a breather and a quick nap.
We do get some laughs though because she still has a quick wit and can make comments or throw zingers out...a talent she only developed since diagnosis. She was never good at making people laugh and never had the ability to throw out zingers...though they are usually at Kaitlyn's expense, it's all in good fun. We are also able to get some laughs out of Brianna, though they are very few and far between. We miss her smile and her laughter so those moements when you are lucky enough to catch it, it's a truly blessed day.
Kaitlyn has been absolutely wonderful lately!! She is out of school and is witnessing the rapid decline in Brianna's health which I think is making it easier on her to see why Brianna has been the focus for so many months. Though they fight constantly and as I pointed out before, they have always had a love/hate relationship, they have expressed real concern and love for each other over the last few weeks. As for Kaitlyn, she is extremely strong and helpful and is taking everything in stride...including allowing Brianna to chide her without getting upset.
Matt and I are trying to decide what to do next and are weighing our options as we are more uncertain now than ever as too what direction we go from here. Brianna will go for another platelet transfusion tomorrow and Bob an I are going to take the 4 kids to the Dells for at least 1 night, hopefully two...so we can enjoy time together without interruption and without worrying about doctors, appointments, cancer, steroids, food, etc. Of course it will be on our minds and Brianna will be very limited in her activity. We hope that we can have a good time and make some memories.
For those of you who do not follow other DIPG sites, I am stealing some good advice given to one of our good friends...
EVERY DAY IS A GOOD DAY, SOME ARE JUST BETTER THAN OTHERS!!
I will chalk today up as a good day. And I will pray for tomorrow to be better.
Finally, I will leave with another Irish saying,
The future is not ours to know, and it may never be-so let us live and give our best and give it lavishly!
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