My head started spinning as the doctors told me the results of the emergency MRI of my 3-year-old daughter McKenna, that afternoon. And that was when our world turned upside down.
McKenna was a very happy little girl. She loved playing with her older brother Jarret and younger sister Kylie. She had always been a very little and petite child. She could eat and eat and never gain a pound! Every morning at 6 AM she would wake up with her Dad before he went into work and have a bowl of soup. The rest of her day consisted of many more snacks and meals. As she would go to the doctor for her regular check-ups I would ask about her small size and low weight. The doctor told me that because my husband (Morgan) and I were not very big people that she would probably not get very big and that we shouldn’t be worried. I tried my best to not worry but still watched her closely.
It wasn’t until around 2 months before her 3rd birthday that things started getting bad. McKenna would experience flu-like systems of throwing up and being very tired. The sickness would last a couple of days and then go away. But before you knew it she would be sick again. It turned into a vicious cycle where she just couldn’t get better. Morgan and I thought maybe it was a bad flu bug that she just couldn’t get rid of. So we took her into the doctor and they weighed her in at 24 pounds. This was a very low weight for a little girl that was supposed to be perfectly healthy. But again, the doctor said she was fine. We had a lot on our plate at the time as we were getting ready to move cross-country for Morgan’s new job and focused on getting all packed up.
Before long McKenna became very lethargic; all she wanted to do was sleep. And when she was awake all she would do was cry. My happy, active toddler was acting like an infant again. I knew something was wrong and called the doctor to try and set up an appointment. Her regular pediatrician was out of town so we had to settle with an appointment with the on-call doctor. I took McKenna in and explained what had been happening with her.
After carefully listening to what I said, the doctor asked if I would have McKenna walk across the room. I was extremely puzzled and wondered what that had to do with anything but at this point I was desperate to know what was wrong and had McKenna do what the doctor asked. I was shocked. As little McKenna made her way across the room she was walking at a complete slant. She couldn’t walk standing up straight! This confirmed the doctor’s suspicions and an appointment for an MRI was made immediately. A few hours later we found ourselves prepping McKenna for an emergency MRI.
I was in disbelief. There was no way it could be this serious. As the doctors were placing the IV in McKenna’s arm to get her ready for the MRI I asked that she get tested for diabetes. She drank a crazy amount of water and I thought diabetes could be to blame. At this point Morgan had already left for his new job. I was doing all of this by myself. After the MRI was finished the doctors analyzed the images I was told that McKenna had a brain tumor. The next step was to determine what kind of tumor it was.
McKenna was checked into the pediatric intensive care unit and was scheduled for surgery the very next morning. Morgan got the first flight back to Boise and arrived just as McKenna was getting out of surgery. The biopsy informed us that McKenna had a tumor called Pilocytic Astrocytoma Hypothalamic Optic Glioma. It’s a type of tumor that grows around the optic nerve, which connects the eye to the brain. Surgery to have this type of tumor removed is very serious because it has the potential risk of causing serious brain damage and worsening her vision. The tumor sat directly below her hypothalamus right in the middle of her brain. The hypothalamus controls many hormones and functions of the endocrine system. This explained why she ate so much. The tumor had damaged her hypothalamus leaving her with the feeling of always being hungry. With this in mind the doctors recommended that we try and get as much of the brain tumor out as possible. And after 3 surgeries in one month they were able to remove about ¾ of the tumor. To remove the remaining parts McKenna was going to have to go through an 18-month round of chemotherapy.
Before she started chemotherapy McKenna was able to come home and recover from her surgeries. We had therapists that would come to the house to work with her as they taught her basic skills she had lost. She had to re-learn how to walk. Once chemo started we found ourselves spending a great amount of time at Mountain States Tumor Institute. Chemo wasn’t an easy time for her or me. I hated having to watch my little girl go through so much pain. But she was tough and through the love and support of her family she successfully finished her chemo treatments.
After she finished the doctors wanted to make sure that the tumor wasn’t growing back. So periodically she would go in for MRIs. For several years there was no regrowth. But one MRI showed it was starting to grow back. This meant another round of chemo. This time McKenna was able to do chemo at home by taking an oral pill. And soon enough the tumor was stable again, showing no regrowth! It wasn’t until she was 12 that the tumor started growing back AGAIN. This time instead of chemotherapy the doctors recommended radiation therapy. After months of research we chose to go to Boston MA and have Proton Beam Radiation Therapy. We spent 6 weeks in Boston receiving radiation every day. McKenna tolerated the treatment very well with minimal side effects, which gave us the opportunity to explore Boston! We have adopted Boston as our second home!
We are now one year out from radiation treatment, McKenna is currently scanned every 4 months to observe the tumor. So far all of her MRI scans have looked good and the tumor has been stable to slightly smaller. McKenna will always have MRI scans to follow the tumor. We are in hopes that the residual tumor will die from the radiation and turn to scar tissue.
Because the tumor damaged her hypothalamus she still has the feeling of always being hungry. She can eat a whole meal and never have the full satisfied feeling. She has even eaten to the point of being sick before. The term for this condition is known as Hypothalamic Obesity and there is nothing that can help her.
McKenna’s weight was getting out of control from eating and sneaking food. It got to a point where we had to lock the refrigerator and pantry to keep her from sneaking. To get her weight under control we started calorie counting and have had great success! McKenna has lost 40 pounds since January 1st, 2014! Her weight and her eating disorder will always be a struggle for her. But we have high hopes that through research there will be a solution to help her and other children who suffer from this disorder.
McKenna has been through a lot. After so much time in the hospital, chemotherapy and radiation it is important for her and our family to enjoy each other and do fun things. We love going camping, bike riding, and boating together. McKenna enjoys an oncology camp called Camp Rainbow Gold that she attends every year. This has been one of the greatest challenges my family has had to face but from it we have gained great experiences and great friends!
Written by Kristy Randis