This past 19 months has been such a roller coaster of emotions. So many times Oliver will go through periods of time where Ed and I think that his tumor is growing because of the symptoms he'll start having. He'll start choking more, stumbling more, etc. After a bit of time, the symptoms will subside and we are left wondering what is going on. We were so sure that his tumor had been growing, but were gladly shocked and surprised to find out that his MRI in June was still stable. He has his MRI's every 3 months to check on the tumor and see if it remains stable or has grown.
In the months that we wait for an MRI to ease our fears, it seems that I freak out about symptoms reappearing and wondering if his tumor is progressing. It's a horrible state to be in... always nervous for what the next day will bring.
As far as his symptoms go this is where he is currently:
Double Vision - He still has double vision and so he wears his eye patch most of the day. If he doesn't wear it, he gets a headache and nausea. A few weeks ago, he'd taken his eye patch off and it looked like his eye was straightening out! I couldn't believe it! So, he's been having periods throughout the day that he doesn't wear his patch, which is great!
Balance / Gait - Oliver still walks differently than he used to. He trips and falls down every once in a while here at home and when we are out and about. His legs just aren't as strong as they used to be and his body isn't doing what it should. I joke with him that he walks like a drunken sailor. We try to joke around about things to make it easier to deal with at times.
Strength / Endurance - Oliver can still walk, but we just got him a new wheelchair fitted for him last week. Whenever we go to the store, I try to get him to walk as much as he can so he can get the exercise in, however he tires easily so he's usually in the wheelchair. He just can't walk long distances anymore.
Speech - His speech has gotten worse over the last several weeks. A few weeks ago he was at my mom's house and I was talking to him on the phone and I seriously could hardly understand a word he said. When I'm with him face to face it's easier to understand him, but we have to ask him to repeat himself several times. I've also noticed that the longer he speaks, the quieter he becomes. When he's finishing a sentence it trails off like he's having a hard time catching his breath. When he's getting upset and tearing up or when he's whining about something, it's almost impossible to understand him. I find myself straining to make sense of what he's saying.
Emotions - I don't know if it's because he's getting older... if it's because he has a younger sister that is close in age... sibling rivalry... or what... but the anger and the eye rolling has been difficult for me to deal with. He has times where he just is as sweet as can be and laughing and joking around and then there are times when he's bugging the crap out of his siblings and gets angry and more aggressive when someone ticks him off. I know anger is an issue when a child is on steroids, however he hasn't been on them for over a year now. He's also been more emotional and cries and gets upset more easily. I do know that brain tumors can affect emotions based on where the tumor is pressing in the brain. The anger and pouting has been so hard for me to deal with because it's just not the same Ollie which makes me so sad to see and it just grates on my nerves to be harping on him all day long.
It's hard to see how much he has changed both physically and emotionally / mentally. I see so many photos of kids with DIPG and I'm struck by how much they look alike. The way their legs look is the same... the loss of muscle tone, the droopy eyes, the sagging smile at times, the way they speak. It just makes me sick.
Two more little boys passed in the last few weeks... Ty'Yonne and Kendall. Please keep their families in your prayers.
Ollie's next MRI is September 14th and we are praying that the tumor remains stable or a miracle occurs and it shrinks! We always have to hang on to that shred of hope... even if it's just a shred.