Never Be Discouraged (We're Trying!) - July 4

The weather today matches our spirit on this Fourth of July holiday. It’s cloudy, rainy, chilly…no cookouts, no fire in the firepit, no s’mores, and no fireworks. Brianna struggles each day and is losing her spirit. She now needs assistance at all times as her balance is off, she has fallen a few times, and even has difficulty eating. This became apparent Thursday and Friday as Aunt Faith was here to visit and help out. She witnessed Brianna’s balance deteriorate in just 2 days. What's worse is her mind is almost completely gone and she has no sense of where she is or who she is with. She carries on conversations with people who are not there and she’ll call out for you when you are sitting next to her. If it isn’t enough to watch the physical breakdown of your child, we have also lost her mentally as well. Conversations are non-sensical and there are very few, rare moments when a glimmer of Brianna shines through…like poking fun at Kaitlyn or rolling her eyes at me. The rest of the time, she appears to be in her own world!
She fell the other day and as Kaitlyn jumped to try to rush to catch her, Brianna started screaming at Kaitlyn, “Get away, I hate you, get away!!” In Brianna’s mind, Kaitlyn tried to hurt her and pushed her down. This ripped Kaitlyn’s heart out and after I explained to Brianna what she was trying to do, she hugged Kaitlyn and apologized and told her she loved her. Thank goodness Aunt Faith was there to comfort Kaitlyn and bring her back downstairs to let Brianna apologize. There was also an incident where she started yelling at me to keep Bob away because he was going to hurt her, when usually he is the one who brings more comfort to her than anyone. She trusts him to help her more than me….probably because she feels safer as he is much stronger than I.
Nurse Jessica began helping out from 11pm-7am, Monday-Friday and it has lifted a huge weight. Brianna still doesn’t sleep well at night and we have no idea what keeps her going! We have had plenty of family and friends coming over to help during the day, to allow for a short emotional break or a much needed nap. I was preparing Brianna’s breakfast today only to look at her eating a crayon. She doesn’t remember eating so the effect of the steroid is worse than ever, not because of the dosage, but because her memory doesn’t allow her to realize she just ate 2 minutes ago. She can no longer reason and trying to keep a 13 year old contained is extremely challenging. Another emotional toll is having my 13 year old calling herself, “fattie!” She also asks, “Do you think I’m pretty?” “You can’t lift me, I’m such a fattie!” Thank you to the steroids, not only does Brianna have to worry about cancer, she has to suffer an additional emotional toll of feeling fat and ugly! No matter what you say to her, she won’t remember so she continues to ask or repeat these questions and statements. She also has stretch marks over much of her stomach, hips, thighs, legs, etc. What makes me very angry is the fact that there is a drug out there that treats edema without all of these negative side-effects, but it hasn’t been approved for children! A 13 year old girl who went from 105 lbs-at least 140 lbs. UGH….I wish I could cut through the red tape!
We had equipment delivered to our house yesterday. A hospital bed being one of them….this is heartbreaking!! I had to go upstairs yesterday and allow Bob and Jill to take the delivery. Today, as much as I hate to admit it, the bed has proven to be a benefit as it keeps her safer by making it difficult to get up and down and risk falling. She has to have our help to get out of bed where as on the couch she would get up and easily fall. The bed is in our family room so she will have company all day long and Bob and I will take turns staying with her on the weekend nights. As long as she can still use the stairs, we will have her sleep in her bed when the nurse comes to help. She loves her bedroom!!She tries to color or draw, but usually ends up with lines, circles, or squiggles on a page. Her speech is slurring and it is becoming more difficult to understand her. Thus, if you ask her to speak up or repeat herself she becomes very frustrated. Her mental, emotional, and physical condition deteriorates every single day. We never know what we are going to experience from one moment to the next.
Our heart is also breaking for our friend Max! We seem to have been on identical paths since diagnosis. Today, Brianna started crying for Kole (our buddy from St. Jude who we pray remains stable!) She misses him and wanted to see him soooo bad!! Another friend from St. Jude, Ravyn Finch is also not doing well so hearts are breaking all over the place.I don’t even know what to ask for anymore. Obviously, prayers…but I don’t have any energy left to even begin to think about what to pray for…..I am trying not to get discouraged and find the strength to carry on, but it is very difficult. My sister sent me this poem which helps, but I think I need to read it more often.
“Never Be Discouraged”A Poem By: Helen Steiner Rice
There is really nothing we need to knowor even try to understand,If we refuse to be discouragedand trust God's guiding hand.So take heart and meet each minutewith faith in God's great love,Aware that every day of lifeis controlled by God above.And never dread tomorrowor what the future brings,Just pray for strength and courageand trust God in all things.And never grow discouraged-be patient and just wait,For God never comes too early,and He never comes too late.