Gabby recently ended radiation treatment and Chemo. She did 6 weeks/30 radiation treatments. The new plan is we attend clinic weekly for a quick check up and then in September she has an MRI to see what progress has been made. After that the new plan could include 5 days of chemo every 28days for the next year. So basically she is in a holding pattern until we see how everything worked.
Up until last yesterday she seemed to be getting more energy, and eating better. However last night she started having trouble drinking. When she drank she would cough it up and her head would start to hurt. Also she seems to be much more lethargic, doesn’t really want to do much.
We took Gabby to clinic hoping it would only be a few hours long. Unfortunately those few hours stretched to about 9 hours. She needed to be reaccessed and given fluids. She was also started on steroids. A cat scan was done. After talking to the doctor a number of things were discussed. We would watch her over the next few days and see if she was improving. The CAT scan showed swelling in the brain, therefore the ventricles are narrowing which could prevent fluid from draining. So a shunt was discussed that would be put in the brain to allow this fluid to drain. A tube might be needed if the drinking doesn’t improve in order to get fluids into her system. Please forgive me if I didn’t get that all correct. It’s how I heard it.
Two days ago we were excited about how well she got off the couch and scooted across the room for a book and now we are discussing possibilities of even more procedures.
Does he really need another angel by his side?
On Friday my mother’s husband passed away after he lost his long battle with cancer. I have yet to tell my daughters. They know their sister has cancer, they are bright girls and it’s just a matter of time before they ask the question: What about Gabby’s cancer?
As I was at his celebration of life to say goodbye, I listened to the grief counselor say a few words about how he was now sitting with god, He was a new angel by god’s side. I realize this was for Joe but my mind drifted to Gabby.
We all believe and are praying she gets better. But as doubt drifts in you have to wonder what if? That’s when the anger set in. To myself I wondered doesn’t god have enough angels? Why would he need my five year old? He doesn’t need her. He’s selfish; he wants all the good ones. People kept telling my mother Joe is in a better place, he’s not hurting. Again I thought of Gabby. Ask her if she would rather be sitting by god’s side, or would she rather be sitting with her family on thanksgiving morning in pajamas watching the parade. The truth is she is my angel, my baby, no one else’s. No one has a right to my child but me and her family. If my child is taken it’s a selfish act, it’s not an act of mercy, and it serves no purpose what so ever. It will take a miracle to convince me otherwise.
Who is better and stronger for this????????
On Saturday I took place in a grief group. I listened to a person explain that she was better and stronger because of this. I disagree. No one is stronger because of this, I’m not a better person, Gabby isn’t stronger or a better person for it. No one in my family can come out of this and say” I saw the good in what is happening, no one can say I learned so much from it. It’s ridiculous to think that such a tragedy can bring hope, can bring peace, and can bring a better person. To be honest with you I was happy the way I was, I didn’t need to be better or stronger and neither did gabby.
It’s strictly my opinion that that most families who deal with this are basically victims of torture.. First the sick child. Each day they go on not know what is causing the pain, why won’t it stop, why does food taste different, why can’t I run with my sisters anymore or swing on the swings, why dos everyone scare me. Torture.
Now move to the parents and siblings. Same thing we sit and we watch our child, our sister suffer, not knowing when or how it will stop, not knowing how to put them at ease. Each day, everything you look at is torture. I can’t look at a picture of Santa Claus without crying. Everyone says live day to day in this situation. Well I’m thinking about next Christmas and the one after that. Will she be here? Will she be old enough one day to look at me and say: dad I know you’re Santa Claus? Torture.
The other day we were sitting on the couch watching TV. It was a Disney show about first kisses. Gabby looked up at Carolynn and said I had my first kiss two years ago with a little boy in her class. As cute as that was I started to cry, because I wonder will she ever have another first kiss? She has watched her sisters get on the school bus for three years; she’s been looking forward to getting on that bus. Will she ever get to? Torture.
Every minute of every day for the rest of our lives is filled with the unknowing just another form of torture. It’s torture knowing a five year old innocent little girl that has never lived; never experienced what life can be is now fighting for her life.
When people made speeches at my mothers husband services they told great stories about his life, how much fun he had, we are two months into gabbys diagnosis and I have trouble remember how it felt when she hugged me, or how she sounded when she opened a birthday gift and was excited. How is that not torture?
- She got to meet Brad Lidge, but only cared about ice cream in the Phillies hat
- Held up the Phillies foam finger with both hands.
- I was changing her diaper and she looked right at me and said” dad your horrible at this”
- She waved at me one morning
- Radiation is done
- She wants to go to the beach
- She cheats at connect four
It comes down to a few things. We still believe, we know if anyone can do it she can. We have no choice but to learn to deal with the pain, deal with the unknowing, never embrace it, but always be aware it’s there.