BRAINfully Strong - Katie’s Journey

One of a parent’s worst fear is to watch your child in pain with no way to help them.

It started three years ago this month on a normal high school day, playing dodgeball in gym class - my daughter Kay gets contact from the ball to her head, causing her to get dizzy, fall down and a headache immediately occurs.
Calling it a concussion, doctors ordered her to rest and take it easy for a few days.

Days go by, the headaches turn to migraines. Weeks go by and Kay spends more time in her room with her head covered with blankets, no lights on, no sound and beginning to miss a lot of school. Doctor visits result in the same outcome “Just a migraine due to the concussion, continue taking the migraine medicine”.

Almost a month goes by, symptoms getting worse now - blurred vision, nausea, fatigue and light sensitivity. Kay tells me it feels like someone put a concrete block on her head, the pressure unbearable, ten times more painful than a normal migraine. The next doctor visit, I got more persistent telling the doctors something is wrong, all these symptoms every single day just doesn’t feel right. Finally, a CT Scan was ordered which showed a spot in the center of her brain. From there, an MRI confirms some sort of mass on the brain.

We then travel out of state to a speciality hospital in Vermont where a more in-depth MRI was completed which revealed a tumor on the pineal gland which is centered directly between the right and left side of her brain.

Neurologists and Neurosurgeons said the tumor was pressing on the gland which in turn pressed on the thyroid gland and brain causing the symptoms Katie was experiencing. Every specialist we saw all said nothing could be done due to the location where the pineal gland was located.

More days and weeks go by of my high school senior missing school and I watch the tears come from her eyes as she doesn’t want to move out of her bed or even see daylight. Worried and heart broken I could not take away her pain, I started to research pineal gland tumors and called any and all specialists I could locate to find her some relief. One phone call caused me to research even more when a neurosurgeon said specifically “when she starts to go blind or starts to have seizures, call us”. I was appalled and would not/refused to wait for that to occur.

My small town learned of Katie’s diagnoses and wanted to help. A prayer quilt was made for her by a friend and friends and family stopped by with a prayer said for her as they tied a knot on the strings hanging from the quilt.

As my daughter struggled to go to school, even attempting to get out of bed, I was determined to find someone to help her. I joined forums, groups online, lots of research and found there were many other children in the world with the same diagnoses.
Through these forums and online research, I found a doctor in California who had completed procedures on this type of tumor. I reached out to him. A skype consult was done and the surgeon assured me that the tumor could be removed and she would continue a normal life.

We saved our money, used all my savings and our small town started a fundraiser to help get me and my daughter along with her sister to be by her side to California where they would do the surgery.

My daughter, so strong and wanting to be rid of the pain, agreed to go through with the procedure just a month after turning 18.

With the help of our small town and a wonderful nonprofit group called Miracle Flights who were able to give us 2 airline tickets which gratefully we accepted now only needing to buy one ticket for her older sister who Katie wanted by her side also.

Katie was strong all the way through. There was that one moment, just a few seconds before being wheeled into the operating room when tears came down Kay’s eyes, a frightening experience for her and for myself and my oldest daughter. Katie grabbed us with the tightest hug we had ever felt from her. Her sister and I broke down of course after she was wheeled away.

Hours felt like days in the waiting room. Finally the nurse came out, the surgery was successful and she was in ICU recovering.

Covered with the prayer quilt given to her, Wonderful nurses cared for her with the eight stitches to the back of her shaved head and a plate and micro-screws to close the skull.

Images of the procedure were given to us showing pictures of how the tumor was removed.

Three days we slept in a chair in ICU never leaving her side. On the fourth day, she was moved to a private room and for the first time she got up and walked a short distance.

As she walked, her head dangled to the left and her body slightly to the left also. Worried, I called out to the nurse and the surgeon came, telling us her brain was still adjusting and she would eventually start walking straight again. At one point, I take her shoulders and straighten her so she’s standing straight and she got nervous telling me she was tipping over and she was going to fall, I let her go and she went back to leaning toward the left and continues walking a short distance. By the sixth day she was walking straight and amazingly discharged from the hospital. A hospital administrator had heard we had never been to California before and arranged transportation back to the hotel with a short stop to Hollywood Boulevard so Katie could see a few sights. Still daunting her dark sunglasses to shield even the dimmest of light, we left the hospital with a quick stop and stayed in a hotel close to the hospital.

Amazingly, on the seventh day, the surgeon cleared her to fly back home to New York from California. A scary thought knowing the pressure of being on an airplane. Medication helped her get through the flight. She slept most of the eight hour flight. With only seven days after brain surgery, my daughter insisted during the flight to tour a college she wanted to attend at the city we were flying into. Unsure it was the best idea, she was still insistent and I was amazed at her strength and willpower stating “we’re here already mom, just get me a wheelchair”. So off we went to tour a college just seven days after she underwent such a major procedure. Truly a strong girl.

Homeward bound from there, another three hours in a vehicle to make the road trip home to the mountains. An exhausting day, we had to pull off to spend the night at a hotel.

Finally home, now the challenge was to get her through the daily routines of walking up and down the stairs, showering, making sure she rests properly, needing a pillow wedge to keep her upright while sleeping and of course the wonder if she will be able to graduate high school in the next few months.

After a few weeks of rest at home, we were able to get tutors to come into our home to get her caught up on schoolwork. So many days missed from school, we were afraid she wouldnt be able to graduate. And persistent and strong she was, she wanted to attend her high school prom. With her sunglasses and wheelchair to rest, she went to the prom and although it was too much for her to attend the entire event due to the noise, lights and music, she proudly lasted until the announcement of prom king and queen and to her amazement she received the honor of prom queen by her classmates.

It was now a week before graduation she was just one hour short of her requirement to graduate. We were able to get through that one hour and plans were on the way for a graduation to attend and a graduation party to plan. Proudly again through all she went through she was able to still obtain an advanced regents diploma!

After graduation she attended her first year of college, she struggled and still has side effects from the surgery - red tintness to her red eye and occasional blurriness in her eues but nothing compared to the pain she endured before the surgery. The stress and strain of studying in her psychology major caused some migraines to come back. She had determination, strong as always and managed to get barely get through her freshman year.

I supported her tough decision to take her sophomore year of college off to rest and she realized the coursework and schedule was just too much. It was in her best interest right now. We are hopeful taking this year will enable her to recover some more. I admire her strength, courage and willpower to attempt college after such a journey.

Throughout her recovery, we learned that the tumor on her pineal gland was always there and the dodgeball hitting her that day just happened to set off the symptoms which would have some day eventually would happen anyway.

Thankfully that day in gym class lead to the discovery of the tumor which if left undiscovered until a later time could have lead to a much worse scenario giving it more time to grow and cause other symptoms. Looking back, that day was a blessing in disguise!

Although she still struggles with the red tint and blur in her left eye and will now be on medication for hypothyroidism, our prayers are now for Kay to be some day symptom free and be able to fulfill her dreams to be a psychologist.