Story of Hope
My daughter was born on August 12th- a Leo. I didn't expect this as she was due a few days before Thanksgiving. However, complications caused her to be born 14 weeks early weighing in at just over one pound. Maybe Fate knew that she would need the heart, the courage and the strength of a lion.
Surprisingly, she sailed through her NICU stay and went home a happy, healthy baby. In late 1999, she had a few episodes of unexplained vomiting over several weeks. I took her to the pediatrician saying, "This is a reassurance visit for you to tell me my daughter doesn't have a brain tumor." She had us schedule an MRI.
On December 3rd 1999, we took our then 5 year old daughter for a "reassurance MRI". Had I really thought she had a brain tumor I would have never scheduled such a test on a Friday night. However, the 6:45 PM time slot would allow all of us to go together so it seemed logical at the time. We had gotten 75 minutes into our 45 minute MRI when the neuro-radioloigst came in and said, "Hi, I'm the neuro-radiologist and I just need to inject some contrast." He then came over and said, "Yes mom, it is a posterior fossa tumor." In a heartbeat our lives were forever changed. Our journey began in to the world of medulloblastomas and brain tumors.
Fortunately, we were at a Pediatric Brain Tumor Consortium site and they had everything worked out. The neurosurgeon had been contacted and a spinal MRI had been immediately added. A PICU bed was ready. The neuro-oncology social worker was on her way. The neurosurgical resident was in the radiology reading room ready to talk with us - with surgical consents in hand. I called my director at work and said get me off the schedule for the next three weeks (although the resident only thought I would need to take off two.) We were whisked through the rest of the night.
We got a gross total resection but the price was high. She came out of surgery with cerebellar mutism, posterior fossa syndrome and cortical blindness. She was extremely irritable, blind, mute, unable to swallow, the right eye turned all the way in towards her nose, her face drooped on the right and since she could not swallow drool dripped continuously down her chin and incontinent. Her right side was paralyzed (and the left arm went out for a little while too). She had no muscle control (marked hypotonia) and could not move voluntarily. She needed to be turned every two hours for a few weeks. We tried to figure out a way to communicate with her but she could not nod her head, she could not squeeze our hand or give a thumbs up, she didn't even seem to be able to control her eyes. Yet, we thought she could hear and had the fears and concerns of a normal 5-year-old.
In addition to the craniospinal radiation and chemotherapy (vincristine, CCNU, and cisplatinum), she would need intensive rehabilitation. Her course was complicated. She developed vincristine toxicity – losing the reflexes in her legs, the ability to feel to a level above her knees and her gut stopped working. Fortunately, after stopping the medicine for several rounds she improved in this area. Halfway through cisplatinum we stopped due to hearing loss. After multiple second opinions, it was decided that she had too many other complications to risk losing hearing too. Nutrition and weight were issues also. She was tube fed for a year.
Our first year off therapy was no better than on. She had developed inexplicable ulcers on the back of her head. At first it was thought to be radiation-induced. So, we did 40 treatments of hyperbaric oxygen therapy. Hyperbarics is more intense than anything else we experienced, but it didn't help. Finally it was apparent that she had an infection in the bone flap so it was back to the OR. She came out with a gapping hole to the dural covering of the brain. Months of antibiotics and dressing changes followed – along with another 20 hyperbaric oxygen treatments.
During all this time, we did not let life pass her by. We were fortunate enough to be able to let her travel so we did. We got to see Mickey Mouse and Shamu in Orlando. She sat with Martha Washington in Williamsburg. She rode on a dog sled in Quebec. She saw Condors over the Grand Canyon and walked on petrified logs. She became a Daisy Girl Scout and now is a Brownie. She took ballet, tap, swimming and tumbling at the YMCA. Perhaps some of our best times were family dates when we went to the movies or a picnic.
Now 45 months later- we are cancer free and leading a great life. We will never be able to leave the experience behind as she has a shunt (just revised this year after a shunt failure). She is on growth hormone injections. We expect for her thyroid to fail in the upcoming year or two. She goes to a private learning differences school as academics are tough.
On the upside- Tori is gentle, perceptive, social, happy, and has a great sense of humor. She is a wonderful kid to be around and her peers like her. She loves tea parties, getting dressed up, and sleeping over at friends. She loves swimming, ice skating, yoga, Brownies, and now wants to take kickboxing.
My parting words... Linus Pauling said, "I have had dreams and I've had nightmares. It is because of my dreams that I have overcome my nightmares." Healing takes time. Healing takes opportunity. Healing takes dreams.