Ila is a very shy girl who can be swayed with food and cute animals or funny cat videos.
We got her diagnosis when I took her in thinking she had an ear infection. She had been tripping and falling a lot and I thought it was maybe just vertigo or inner ear issues. But we got a huge shock with a DIPG diagnosis. DIPG is a terminal brain tumor located in the brainstem, making removal impossible.
It was a whirlwind from there and we immediately started radiation. We stayed in another town an hour away, it was physically easier for her than the daily car rides but it took a huge toll on every one emotionally. The other kids missed all of us so bad, and she missed everyone. She hated the routine, and the huge dose of steroids made her much less capable of handling all the awfulness she had to deal with. She was angry and cried and yelled and just not our little girl. We honestly doubted her course of treatment daily.
We both obviously couldn’t work during her treatments and honestly didn’t want to take even a moment away from her. Knowing your child is suffering and that this monster is eventually going to win is heart wrenching, every day is different. Some days you’re up and full of optimism and it seems like a normal day, until the inevitable moment when you remember that eventually this little ray of sunshine that warms everyone’s heart she crossed will no longer be with you.Sometimes you go the whole day without crying and sometimes you can’t stop. Currently Ila is doing amazing and running and playing, we are trying to pretend life is normal until we no longer can’t.