Sunday, January 22, 2012

It's been a year today


It's been a year today, well technically yesterday (12:30am). I wanted to wait until the kids were asleep to begin writing as I can better reflect on this past year. The previous post reflected on day 1. I wanted to sum the year up in this post, both the good & bad. Briley was diagnosed on January 21st, 2011. It was a Friday. She started her chemo on the following Monday. Two nurses came into the room. Both nurses were wearing a gown, mask, and gloves. The chemo was in a bag with HAZMAT labels on it. It is pure poison. My anxiety level rose as the first chemo dripped into her veins. At that time, I would have gave anything, even my life, only if I could be the one with cancer. Not my 3 year old daughter.
The 29 straight days of steroids also started that day. The staff warned us about the the physical and mental changes to expect, but how bad could it really get? Well, let me tell you. She ate, and ate, and ate. If she didn't get what she wanted, the roid rage kicked in. She would literally sit in bed and eat all day. She wouldn't walk because of a combination of leukemia and steroids made her legs and back hurt. She could only stand with assistance. She gained tons of weight. We kept food stocked in the room. She would wake up every 2 hours wanting something to eat and if we didn't have it, she would throw a fit. It was a very trying time. The staff at the Ronald McDonald House jumped on her on day while she was throwing a fit. It's not her fault. We let them know a thing or two.
That was a long 29 days. However her immune system was still compromised. Briley got an respiratory infection that most kids wouldn't even see the doctor about. It was serious with her. Her O2 stats were low. She had seesaw breathing. I have just enough medical knowledge that to be scared. I would stay up until 4 or 5 in the morning watch her breathing. I was afraid it would get worse or she would finally tire and give out. She recovered from the infection and that was the last she was admitted to the hospital.
Over the next few months, she was able to stay home, going back to Cooks for regular check-ups and treatments. Cancer affects us all. I had to quit 2 jobs. Alicia's pay is still being docked from paying subs to take over her classroom while she was out. Since Briley and Bryson can no longer go to daycare, I have the luxury of having a job where I can stay home most days of the week and keep the kids. Although I've packed on about 25lbs since June. I've gone nearly bald on top from the stress of the past year.
But there is good to come out of this. We've met and made lots of friends during our time there. And just not at the hospital, this town has really rallied around us. I've talked to people that I wouldn't have talked to before cancer. The amount of support that we received has been awesome. We never once had to worry about paying her medical bills, gas down there, hotel rooms, food. We were even fortunate enough to replace the carpet in the house with laminate flooring. Between that and the air purifiers we have going in every room 24/7 has kept Briley out of the hospital. We are doing everything in our power to keep her from getting sick and it has paid off so far. Washing & sanitizing hands and keeping her isolated in the house during low counts have been key. But above all else, we thank the Almighty Lord for watching over her. He has a plan, yet we don't see it. He has heard all the prayers. This is one special girl.
I can tell you, I've been touched by so many kids that we have met going through treatments. Some have earned their angel wings. I will always cherish the conversation I had with an 18 year old that the doctor gave 3 months to live. I rejoice for the kids that have beat these diseases. I can tell you, none of these kids deserve to have cancer. Not a one of them. But it's going to happen. So much has been done for us that we want to give back. I have a million ideas floating through my head. Do I start a foundation that will give newly diagnosed kids iPads or help with medical bills? Do we start a cancer support group for residences of Seymour that will help with bills, meals, rides, ect. We are currently planning a Curesearch walk in Wichita so that's a pretty good start.
One year down! A year and 2 months to go! We are looking forward to a big party at the end of treatment!

1 comment:

  1. You guys are such an inspiration to all of us, especially Briley! Thanks for all that you have done.

    ReplyDelete

Thank you for your thoughts & prayers for Briley! God Bless!