It is so surreal to see such a young person, especially your child, having so many medical issues. Kaylee's life has been altered because of all this. While her friends are working,going to school, and living as you'd expect, her world is centered around medical appointments, procedures, and physical limitations. Not a life I had envisioned for her. But the key word here is - "LIFE".
When all the traumatic events unfolded, way back when, with the doctor saying "sorry it's cancer" I literally fell to my knees and begged God to leave her here. At any cost. I didn't want him to take her from us. At one point I pleaded that he could take anything from her - legs, hands, torso, anything - just let here be with us. It's amazing what you will do when you think you're about to loose something, especially a child.
I have so many friendships that were established from our long stays at Children's Mercy Hospital. Unfortunately, some of those friendships are with parents whose children didn't make it. So heartbreaking. Especially when you know them, the kids, and the fight they went through. It's so close to home and relevant to your life that you almost keep your distance. I mean you feel their pain and you cry because your heart hurts so bad but at the end of the day you know you are in the same pool when medical professionals are talking to you about percentages, mortality rates, and statics. Scary shit!
I think back to day the doctors told us about the cancer. Me and Tammie, not being an Oncologist or anything close to it, were forced to make decisions regarding treatment. I think they gave us a twenty minute talk about options. Option one) accept a treatment that has worked well since 1972. Or Option 2) take part in a study that has even better results then the 25 yr. old procedure but roll the dice on the side-effects and unknowns.
The door shuts. Hmm? "What do you think Tammie?" She replies, "I have know idea." All the while I'm thinking, I have trouble effectively ordering food from a drive-thru window and I am suppose to make a decision on cancer treatments for the most important thing in my life. Finally I said "lets ask the doctor what he would do if it was his kid OR we can flip a coin." We asked the doctor. Being put in the position to make a decision like that is very difficult. But we made it and the treatment worked. Unfortunately Kaylee got stuck with some ugly and debilitating side-effects but she's here and that's what matters most.
If these bone issues are what we have to deal with, then so be it, I'm fine with that as a parent. I'm just glad he didn't take her. I will be glad when we can get this behind us and move on. It seems like it never ends as far as having commitments and obligations to issues that surrounded the leukemia. Appointments, surgeries, and up & downs. But I will tell you this, no matter what comes our way, I will fight and do whatever it takes for my daughter or anyone else that may need help. Speaking from experience, with Kaylee and Landen, being inside a room, trying to make a life or death decision for your child, is the worst and most difficult thing I think a person could ever face. If you've been there then you know what I mean. It's something I wouldn't wish it on my worst enemy.
I'm just glad Kaylee's here. She is such a beautiful person. I've never heard her complain or take pity for herself. She takes everything in stride and stays strong around us even when I know she's feeling low. She's had a few limitations the last few years because of the illness but she lives life on her terms. She isn't a little girl any more and with all she's had to deal with she probably had to grow up a little faster than other children. My daughter and her life is a blessing.
