Before this started, before Gabby was diagnosed, I didn’t realize how different the two words afraid and worried were. Since this happened I have constantly been worried for Gabby. Worried she wouldn’t grow up to figure out I was Santa, worried I wouldn’t teach her how to drive, worried that some boy would try to get her to sneak out late one night. In the last two weeks I have no longer been worried. It’s switched over to being afraid. Afraid she wouldn’t see her sixth birthday, afraid she wouldn’t see Disney in October, afraid she wouldn’t see Christmas this year. Afraid! Her symptoms are getting worse, the vacation we planned to the beach didn’t work out and we returned early for her to be admitted to CHOP and receive surgery. I have never so badly wanted to just be worried as opposed to truly afraid.
We headed to the beach with all these ideas that she would experience joy and happiness, smile and laugh. Unfortunately that didn’t happen. When we took her to the beach she just wanted to go back, she sat on a chair and just closed her eyes. At the house she just wanted to eat and watch TV. She sat and watched her sisters laugh and have fun and all she could manage was to just pretend to be asleep on the couch.
While we were there Gabby’s symptoms got worse. She no longer wanted to walk assisted, and she started to have us feed her as opposed to eating on her own. Her breathing seemed labored as though she couldn’t get a full breath.
One night we put her to bed and watched a movie with the girls and my mother. As I looked around the room at my daughters all I could do was hide my tears because my third daughter was upstairs in her bed fighting to take a breath it seemed. On Thursday morning we called the Oncology desk and CHOP and they said bring her in. We decided to leave the girls with my mother because this truly was the only vacation they had this summer. Carolynn and I put Gabby in the van and headed to CHOP once again.
Back at Chop.
We met with Gabby’s doctor, she had another CT scan and it showed that the fourth ventricle in her brain was narrowing due to the pressure of the mass. A shunt would be placed in her brain with a tube threaded down her body into her abdomen so the spinal fluid would be able to drain since the ventricle wasn’t doing its job.
When we were driving to the hospital I made sure to tell Gabby, don’t worry it’s just a check-up we would be headed back to the beach right afterwards. Well that didn’t happen, she was admitted and surgery was planned for Friday. As I looked at her I started to realize why she won’t say I love you to me. I keep lying to her. I told her we would be leaving and now here she is staying at the hospital again. I had to leave that night to drive back down to the beach to get the girls and my mother due to the hurricane. The next day we drove back. A normal two hour ride took six. When I got back to the hospital Gabby was in surgery. The Surgeon came out and said everything went well. We asked how soon we would see results. He stated IF it works within a day or two. Just hearing the word IF was a punch in the stomach. When they brought her back to the room I broke down, she has a three inch incision on the side of her head and a three inch incision on her stomach. I wanted so badly just to grab her and say how sorry I was, how I want this all to go away and if I could stop it and take it all myself I would. I held her hand in mine. She has such little hands, more tears, more true fear. I kept thinking how could someone with such little hands be so sick, how could someone with such little hands need two surgeries on her brain in less than three months.
Gabby had surgery four days ago, her symptoms haven’t improved. She can no longer manage to lift the spoon to even feed herself Rice Krispies she loves so much. She can’t produce enough suction to drink through a straw. We lift the cup to her mouth she gets some down and the rest just seeps back out of her mouth. She is no longer walking even assisted like she was three weeks ago. Speech now consists of grunts and moans most times, with the occasional word. The worst part is I can’t explain to her why this is happening, why she can’t walk, eat, and swallow. If I’m afraid she has to be truly terrified. Imagine waking up one morning and you couldn’t move correctly, couldn’t eat or drink. On top of that imagine there was no explanation given to you. Just some smiles and promises that it would be alright.
School is back in session.
When we got home from the hospital all the school paperwork was there. Carolynn opened it, started to cry and threw it across the room. The paperwork was a reminder that she wouldn’t be going, life was moving forward and she was stuck behind. She has waited the last few years to get on that bus. She watched her sisters go as we kept telling her soon Gabby you’ll be going to Kindergarten. Less than four months ago she believed that.
As a parent I dream of certain points or milestones in my children’s lives. The day they no longer need diapers and are potty trained, seeing them go to a prom, teaching them to drive, walking them down the aisle when they finally get married, and today the milestones, the dream of giving Gabby a hug and a kiss and waving goodbye as her bus drove away didn’t happen. She currently can’t go to school even with an aide it wouldn’t be possible. We are not interested in home schooling because we want her to be able to socialize with her friends. Now again I’m just afraid that isn’t going to happen anytime soon.
Life goes on
Tomorrow is her MRI, we will have to wait a week to discuss the results with our doctor. A week of not breathing, a week of constant fear. A week wondering is this monster growing, are these symptoms just a sign of tumor breakdown or is she getting worse.
I have to go back to work in the next few weeks. Bills need to be paid, we need to keep insurance. My fears concerning going back consist of the thought that if she gets worse, I won’t be there again, if this monster takes her from us I spent the last days and months away from her at work as she sits with Carolynn wondering why isn’t daddy here. I will hold this against myself for the rest of my life if it happens. I will never get over the guilt that during these days I left her again.
We also have two other daughters, we need to be strong for them, soccer is starting, birthday parties, homework, everything. We need to figure out how to live again with the newest addition of cancer into our lives.
It’s such a powerful word. I need to believe, I want to believe. So I do believe not just that she can be the miracle but believe she is true perfection, she is pure innocence, she is what I strive to become, the type of person that doesn’t hold hate in her heart or anger. A person who just wants to make people smile and laugh as she sings songs on the radio and dances around the room. A person so perfect that even her little snore sounds beautiful. So when you ask me do I believe? The answer is YES. I believe in Gabby and always will.