Two and a half years ago I gave my daughter Alexis a kiss as she was wheeled into an operating room. The doctors told us that the surgery to remove a non-cancerous brain tumor called a craniopharyngioma would likely result in rapid weight gain after surgery, but nothing could have prepared our family for what was to come.
Alexis woke up from the surgery hungry and she’s been hungry every moment since then. It’s impossible to know if the tumor itself damaged her hypothalamus or if it was the surgery to remove it, but the hunger-regulating function of her brain went haywire.
We all thought we could beat it because we knew about it and expected it. But no matter what we tried, she still gained weight. I kept telling her that we just needed to figure out how to make it stop, but nothing worked. Each time we went to an appointment with one of her doctors I would see the scale go up. I expressed my concern with her weight gain over and over, but we’d already tried everything that was suggested to help.
I started to lose hope that we would find a way to control her weight gain. Each day it seemed like there was something new that was hurting Alexis or she’d discovered something else she could no longer do.
We stopped going on bike rides as a family because Alexis couldn’t physically ride her bike. We were no longer able to “stay and play” when we visited with friends because Alexis was in too much pain to be up and about.
Since the surgery, Alexis has gained an average of 2 pounds per week due to hypothalamic obesity. She has also developed several other serious health conditions as a result of the damage to her hypothalamus and the significant amount of weight that her little 12-year-old frame is carrying.
The weight gain is relentless, but so is my dedication to finding something to help Alexis. Last summer, through a registry for people who have hypothalamic obesity, I learned about gastric bypass surgery as a treatment option.
After a lot of discussion with Alexis, we decided to see Dr. Inge at Cincinnati Children’s.
Here’s part of a Facebook post that I wrote after our first appointment with the Surgical Weight Loss Program for Teens: “Well, I can not describe the feeling!! A Dr. and team that really “get it”. They understood everything about hypothalamic obesity. I felt like finally someone takes this as serious as I do. Alexis loved the hospital and so did I. We got everything done that they need for now and now we have to wait.”
That visit was the first glimmer of hope that we’d had in a long time. It felt good!
Unfortunately, a battle with our insurance provider came shortly thereafter, but with the help of some amazing media coverage and the support of thousands of strangers, our insurance troubles were resolved and we are in a position to make this surgery a reality for Alexis.
This Friday, March 21, 2014, Alexis will have the Roux-en-Y gastric bypass surgery, along with a vagotomy (removal of part of the anterior vagus nerve) to help reverse some of the miscommunication that is happening between her brain and her digestive system.
We realize that this is not a magic bullet kind of thing and we know that there are risks associated with the surgery, but we are confident that it is worth the risk. Everything we’ve tried has failed to control her weight. If we don’t do anything, her weight will continue to increase and eventually my child will lose her life to the weight.
This surgery, we hope, will give her a fighting chance.
I hope this Friday will be the beginning of the end of all of her pain and insecurities. I hope she won’t have to endure another day feeling like she is starving. I hope she will be able to think about fun things, not just when she will get to eat next.
This surgery will be a success in my mind if we can achieve a better quality of life for Alexis. I hope that she will be able to get around better and not be the object of staring anymore. Her sister and brother look forward to her being able to play with them again. I would like for her to have the opportunity to be a “normal” kid, teenager and adult. And more than anything, I hope the surgery will result in enough weight loss that she isn’t in constant pain. She has endured so much already.
She is excited about the surgery, but nervous. So are her dad and I. We hold so much hope for the future. We know it is going to be hard but we will be with her every step.
My daughter is a caring, loving and brave kid. I’m proud of how she’s handled everything that has happened in the last couple of years. She’s mature beyond her years and I want more than anything for her to be happy.
So, here’s to Friday. We hope you’ll keep Alexis in your thoughts!