My daughter is sick. She is fighting for her life. I realize there are kids everywhere fighting the same fight. But right now it’s12:33 a.m. My wife is upstairs crying because she read some more stories about children with DIPG. Even the positive stories are “complicated” Right now I’m sitting here with a drink. Knowing very well it’s not the answer. But what is?
Tonight my sister and brother visited. They brought all the cousins, two little boys and two little girls. They all ran around playing, screaming, singing to the radio. Gabby was in bed at6:30. Didn’t want to look at any other them, play with them.
I turned on a show tonight and saw Katy Perry singing a song Gabby used to dance along with and sing in the car. Gabby no longer even wants the radio on. Where is the light at the end of that tunnel?
Treatment ends soon, and then we wait to see if it worked at all. They told us in radiation not to be alarmed if it doesn’t look like it worked, they said inflammation of the brain makes the first scan look bad. How do you be happy with that?
I feel selfish; I’ve met a lot of great people going through this. They seem stronger, more confident, they have more faith. I seem only to cry and ask why her? And the anger I feel can’t be measured. How can this be happening? I write this blog to update Gabby’s supporters, to get my thoughts out, when all I want is to never have had to write anything. All I want is that five year old girl in the back seat to sing Katy Perry while I yell at her to stop kicking the seat.
Gabby had a Biopsy and hasn’t been the same since. Over the last weeks we have hoped that the treatment was working, now we wonder is it just the fact that she is healing from the biopsy. We are going to try to have a vacation from it all in august. But where is the light there? It seems all we are doing is running away, hiding from coming back and having to do that scan, hiding from the fact that a new “Plan” will be put in place. Hiding from the fact that we will have to tell Gabby the yuckies are still there and now we start with something new.
Katie says a prayer for Gabby every night I sit there while she does. My fear is what happens if? How will I explain to Katie if something happens to Gabby and she said that prayer every night? How am I going to explain it didn’t work? How will I explain that for the past two months I have said she is going to get better? Everything will get better. Katie will know I lied; she won’t forgive me,Madisonas well. For the rest of their life’s if Gabbys doesn’t win this battle they will know I lied to them the whole time. How can they possibly hear one of those sayings and believe in them?
I am so grateful for all her supporters, all the people praying for her, all the people who give their time to help her and us, to get the word out, to make sure everyone knows who Gabby is. People constantly say what a fighter she is, how strong she is. But what choice does she have. We don’t ask her, we just tell her this is what you have to do. Take the medicine, let’s go to the hospital. She has no choice. There is no real way to explain to this 5 year old what is going on and why. I sat in the yard tonight wondering if she is in pain. When we do therapy with her she howls. Is it pain, frustration? The only thing I know for sure is that it’s horrible.
All day we put on a tough face, a strong face, we force smiles. Act like everything will be fine for my other two girls and each other. Much like Gabby and her treatment we believe because what is the alternative? Don’t read this and assume we gave up. We haven’t and we never will. We still believe she will get better. The issue is trying to make sense of any of it. Trying to keep looking for some type of light. We will never give up, we will always believe in Gabby. Lately though it starting to look like Gabby doesn’t believe. I used to ask her nightly, you know you’re getting better right? She used to shake her head and say yes. The last two nights she just shrugged her shoulders. I’m not sure I can keep asking her that question. Because I’m terrified she will say no.
The world can be a beautiful place; there are things everyday that make people happy. However today in this house tomorrow doesn’t look brighter, and the tunnel seems to be a cave. But we will wake up, we will hug and kiss her. We will put on that face and be strong for her. Praying and hoping that all those saying ring true.