Allie’s Illness
On the morning of March 21st, 2013, I went to wake Allie up and found her unresponsive in her bed. She was seizing, and the ambulance rushed us to Children’s Mercy South. There, Allie went into a persistent state of seizure and quit breathing on her own. She was put on a ventilator, and we were transferred by ambulance to the pediatric ICU at Children’s Mercy downtown.
There, we were blessed to have neurologist, Dr. J.B. Le Pichon, on service that day. Had he not been there, Allie’s story may have ended here. He stopped the seizures after other physicians had failed. Allie went through many tests to see what was causing the seizures. After the CT and MRI, we were told that her entire limbic system of her brain was swollen. It was an unusual presentation, and many specialists were trying to figure out the cause. We were told the most likely cause was post infectious encephalitis. But even on day one, Dr. Le Pichon had warned that a very rare brain cancer was still a possibility. He kept telling me he was very concerned for Allie. Dr. Le Pichon feared that she may have lost everything, but we would have to see how she would respond.
Allie was a fighter. She surprised everyone at the hospital, and she was able to talk as she came off the ventilator the next day. Dr. Le Pichon treated her with high dose steroids and anti-seizure medication, and she got better quick. That was our miracle. We got her back. After eight days at the hospital, Allie was able to come home, and we were hopeful she would make a full recovery. With rehabilitation, Allie was able to get back to near baseline and even went back to preschool for a couple of weeks in April. But as the steroids tapered off, Allie lost focus, began falling, and became very impulsive. We called Dr. Le Pichon to share our concerns. It was almost as if he had a sixth sense about Allie’s case. He did not hesitate. He told us to head straight to the ER to check into the hospital. He needed to rerun the tests.
On May 1st, Dr. Le Pichon entered Allie’s hospital room with the results of her second MRI. He told the students to wait outside and closed the door. Right then, we knew it was very bad. The MRI was identical to the one five weeks prior, and we should have seen improvement on the image. He told us he thought it was gliomatosis cerebri. A brain tumor that does not form a mass and one so rare that it only strikes about one hundred people a year. Inoperable, terminal, and in Allie’s case, it had already invaded the most critical areas of the brain. Dr. Le Pichon feared that Allie had the worst tumor in the very worst spot. He called for consults with other specialists at the hospital. We were given the option of a brain biopsy to confirm. We refused it for several reasons. There were risks involved due to the location in the brain, and it was untreatable even if confirmed. Most of the other physicians at the hospital doubted that it was gliomatosis cerebri. They thought that an infection or an autoimmune disease was more likely the cause. Kyle and I knew our best hope was that Dr. Le Pichon was wrong. Because if he was right, there was nothing we could do to save Al.
Allie was in and out of the hospital in the month of May because of increased seizure activity. Dr. Le Pichon sent us to one of the top hospitals in the country to have another consult. There, we were told that it was most likely caused by an autoimmune disease. We were able to come home, and she was treated with IVIG weekly at Children’s Mercy. Together, we were hopeful that this was something we could manage.
The end came very fast. During early June, Allie continued to lose function, and the seizures became uncontrollable. She was barely speaking and could only walk a couple of steps. Tremors made it impossible for her to do simple tasks, but she always kept trying. It was heartbreaking to see her deteriorating so rapidly, and it was maddening to be unable to stop it. She lost control of her bladder, her bowels quit working, and she could not swallow. We carried Allie into the Children’s Mercy ER on June 10th, and she was vomiting at check in. The ER physician that day had tears in her eyes, and we knew the end was near. Allie’s last words to us that day were “I love you.” After a day and night of suffering, an emergency CT showed that it was the tumor all along. In less than six weeks since the last MRI, it had doubled in size on the right side. Allie coded in the early a.m. hours of June 11th. The hospital staff was able to revive her and put her on life support, but she was never conscious again.
We faced decisions that no parents should ever have to make for their child. After she coded, the only thing we had control over was how much Allie would suffer. The end result would be the same regardless. We chose compassion over all other options. We held her in our arms as she gently left this world. For Allie, there would be no more suffering, and she was granted eternal peace on June 13th, 2013.
After an autopsy, it was confirmed that gliomatosis cerebri took Allie’s life. We sent Allie’s tumor to the Children’s Brain Tumor Project at Weill Cornell to be studied. Allie’s tumor had not been altered from chemo or radiation and that made it valuable for research. It has been genetically sequenced, and those mutations are being compared with the other samples at the Children’s Brain Tumor Project. We are hopeful that Allie’s contribution will advance the science in developing more effective treatments for children like her.