A Little History

Lindsey’s condition at ages 14, 16, and 18 all required tumor extraction using surgical procedures on the   left frontal lobe of her brain. The tumors had continued to grow in the same place in her brain every 18 months, right between the motor control strip, verbal skill center and close to the optic nerve. She had been diagnosed with ependymoma brain tumors.

In spite of these health conditions in her teenage years, Lindsey had graduated from high school with a 4.0 grade point average, participated in a study abroad program in London and Europe, graduated from BYU with almost a 4.0 g.p.a. and had gotten married. I have always been amazed that someone could accomplish all this after having three brain tumors. She was teaching piano lessons, guitar lessons and violin lessons. She loved children. She was also working for me at the IHA. In the summer of 2010, when she was 24, she had started having severe headaches. However, there was no indication of tumors in the brain based on the MRI scans that were being performed.

The pain was so bad and we could find no relief, pain medication was not working so Josh and Lindsey moved in with us the first week of July.

We had no idea where the pain was coming from. Each time we went to the emergency room it was diagnosed as migraines. She had never had a migraine before. It wasn’t until four weeks of trip after trip to four different emergency rooms, and a spinal tap and more MRI’s that we learned that the tumors had spread to her spine.

We were shocked. It had been five years since her last brain tumor, and the brain was fine. Here the tiny tumors had spread to her spine and were attaching like a film along her back bone. She had pain in her back and her neck, plus, the spiking pain of the fluid. Her only comfort was having us rub her feet. We would each take turns sitting at the foot of her bed rubbing her feet. She would “sigh” a little sigh of relief and smile and if we left our post she would be crying from the pain.

We had no idea how serious her condition was. We didn’t fully realize what we were up against as we waited for the appointment with her neuro surgeon. Surely there would be solutions, we had always found solutions. . .

She never made it to the neuro surgeons doctor appointment. She was admitted to the I-med Neuro intensive care in the middle of the night on Aug. 15, 2012, because of the extreme pressure in the spinal fluid. She was experiencing severe headaches nausea, vomiting and passing out and we could find no relief. Her eyes were crossed and she was starting into seizures.

While we were gathered around her hospital bed the next morning, we noticed that Lindsey was losing consciousness. The pressure had been so high that her eyes were not functioning the way they were supposed to.  Her eyes were going cross-eyed and she couldn’t see. She was not responding to the doctor and was not coherent. They ushered us out of the room so that they could put in an emergency shunt to drain off excess fluids and relieve the pressure from the spiking fluid.

They performed the procedure and opened her skull right in her room. There wasn’t time to get her to surgery. Afterwards, we learned that she was dying and that the temporary shunt had just saved her life. She could have released herself right then and there from her dysfunctional body, and yet she chose to stay with us another year. She chose to stay with us even though she had an option right there and then to choose out.

We asked ourselves several times for what purpose? Perhaps we weren’t ready to say good-bye .  .  . perhaps she wasn’t ready to say goodbye .  .  . We still had lessons to learn.

Later that week she had surgery to place a permanent shunt in the right side of her skull that would continue to manage the spiking pressure from the spinal fluid. She came home a week later.

We were trying to help her get strong enough to start radiation treatments September 9. Radiation was my worst nightmare. I couldn’t imagine having to use radiation on the body to try to kill the tumors and watch her suffer. I could hardly contain my fear and my horror. All I could do was be strong for her and those around me while inside I was literally reeling from the horror of it all.

She had had radiation treatments after her third surgery at 18 and the brain was still clear of tumors, so in the hope of all hopes we went forward with radiating her spine. It was what she and Josh decided and so my job was to support their decision.

She was so sick they had to radiate her whole spine. She lost her hair and so much weight, I have never seen someone vomit so much, sometimes 7 – 8 times a day even with the anti- nausea pills. She looked like a World War II refugee. We had people coming and going. People volunteered to take her to and from radiation, I could not emotionally drive her to the radiation treatments and watch them radiate my daughter and treat her body like that. I couldn’t stomach it myself. I think during that time I would cry myself to sleep because of exhaustion and because of how hard it was to watch someone suffer. All I could do was be there for her when she got home from treatments and try to be strong and offer comfort and encouragement. We would talk, and laugh and cry together, and sometimes we would process out all the anger and frustration of why she was going through this. Processing helped us both so much.

We had people bringing meals and so much food, doing yard work, cleaning the house, and taking turns sitting with her throughout the day so Josh and Todd and I could keep working. We had charts on the walls, instructions for those sitting with her and regular phone calls back and forth with Josh and I as we tried to manage everything from work. Of course, during the day, we looked forward the most to talking to Lindsey and hearing her voice on the other end of the line. She would text us funny texts throughout the day and talk to us at night about silly things that happened to her and funny things that people had said or done during the day.

We had at least 50 volunteers helping us in our home over the space of nine weeks during the radiation treatments. She had to take a three week break because her blood count went so low. But, she was still suffering from the radiation sickness during that time and people continued to help.

Yet, Lindsey was so amazing, even happy when she could muster up a smile. She finished radiation around Halloween and the day after Thanksgiving we helped Lindsey and Josh move back into their Condo in Saratoga Springs. Lindsey and Josh went home for about ten weeks which included the holidays. All of us were thinking and hoping that she was going to be fine now and we all had a brief reprieve. A little bit of hair was coming back and she was gaining a little weight. We all had hopes that the treatments had worked.

We were all re-cooperating and hoping that life could return to normal. However, it was not meant to be. It was so devastating to get a call from Josh that he was on his way to the hospital with Lindsey and that we should meet them at the I-med emergency room. It was Valentine’s Day and Lindsey had had a seizure during Josh and Lindsey’s sweetheart dinner at a restaurant. None of us were really prepared to handle the severity of her situation. We all experienced so much sadness and grief as we learned that she would not be with us much longer.

Those next few days were a nightmare. As Lindsey lay in bed drugged and non responsive so that the she could come out of the dysphasia, we spent hours by her bedside. I had seen Todd tear up as we had gone through all these experiences with Lindsey in the last ten years but, it was the first time I saw Todd weep as he stood by her bedside and holding her hand as she slept. We were facing the fact that we were losing the battle and that she was going to die.

They sent Lindsey home with tons of paperwork and home hospice care. I remember preparing the master bedroom for Josh and Lindsey. They needed to be in a comfortable place, I was preparing the room so we could bring my daughter home knowing that I was being called upon to support her in leaving this world and transitioning to the next. So much sadness in my heart, shock and disbelief, surely this wasn’t happening.  

Lindsey’s time with us from the time she started having severe headaches to the final hours of her passing lasted 14 months and Josh and Lindsey lived with us all but 10 weeks of that time. Josh was amazing as he nurtured and took care of her. We shared the responsibilities of her care and having to make decisions to try to help her be more comfortable.

So now, by the middle of June 2011, just after her birthday, Lindsey was back in the hospital because of another severe seizure. After every seizure she would experience dysphasia which meant that she would be out of it for a couple of hours or up to a couple of days where she wouldn’t be able to swallow or eat, she would drool and not be able to talk. This time she wasn’t coming out of it and those functions were not returning. Early on the morning of June 15 a transport vehicle arrived taking her to the A.F. hospital. They were intending to put in a feeding tube so we could get her nourishment and administer the meds. She hadn’t been able to eat for several days.

It felt so dark and heavy at this point, like we had passed the point of no return.  Josh stayed with her in the hospital all weekend they had a little retreat just the two of them. Being at our home was very cramped for all of us and we were living in the upstairs of a three bedroom home, so I know they cherished their time together. That weekend I spent time making arrangements for a tea party.

A tea party for Lindsey.