In April 2013, our 7 month old son, Emory, was diagnosed with anaplastic ependymoma, a rare brain tumor. Since then, Emory has had surgery to remove his tumor and is currently undergoing a Headstart chemotherapy protocol in hopes of delaying or avoiding radiation therapy. We hope his chemo will cure him!.
Emory is our beautiful baby boy. In mid April 2013, at about 7 months old, his dad noticed that Emory was consistently tilting his head to the right. After dad found the term "torticollis", meaning "twisted neck", through some online research, his mom took him to see the family doctor a couple days later. We expected Emory to need some physical therapy to straighten out what we assumed was a muscular problem.
The family doctor felt that Emory was a very healthy little boy but referred us to the pediatrician in the ER at BC Children's Hospital just to be sure. (Thank you Dr. MacDonald.)
After many hours at the ER, the tentative diagnosis was occular torticollis, suspected because Emory was reluctant to sustain his gaze to the left. So next he was examined by opthalmology, but no eyesight deficits were evident that might cause Emory to compensate by tilting his head. Ultrasound imaging of Emory's brain through the soft spot on his head and of his neck were also normal. Our original assumption that the torticollis was caused by a muscular problem was definitively eliminated, confirming what the ER pediatrician had also ruled out.
The next referral was to a neurologist, who like all the other doctors, thought that Emory seemed very healthy. There was still the remaining mystery though of why Emory was tilting his head and so as a last precaution, Emory was scheduled for an MRI.
At the conclusion of the MRI several days later, when dad asked about the results, the nurse said that the neurologist would come to see us (not a good sign, but we were still hoping). The night after Emory's ER visit, his dad had read that in rare cases, torticollis could be caused by a brain tumor. This made for a restless night. When the neurologist came in to report on the MRI, he gravely confirmed our worst fear: Emory had a brain tumor.
This was a Friday afternoon, 2 weeks since the time we first noticed his torticollis. We left the hospital carrying our precious baby and crying. We mourned throughout the weekend.
Emory had a consultation with a neurosurgeon on Monday morning and he was to be admitted to the hospital at that time, surgery being scheduled for Wednesday. We requested to take him home for a nap first. He still had his basic baby needs and we needed time. We returned to the hospital that afternoon, and over the next couple days Emory underwent many tests and procedures to prepare him for surgery. One of the most trying moments was the night before surgery when he needed an IV put in to begin fluids for hydration. Over the span of 3 1/2 hours, he had 4 people attempt multiple times to start an IV. We had to hold him down while he screamed. Then calm him and tell him it was okay and then after he had fallen asleep, try again.
Emory underwent surgery all day on Wednesday, and when the neurosurgeon came out to report to us, he told us that he had been able to remove all the tumor (a later MRI confirmed that there was no visible tumor post-surgery). The tumor was difficult to remove because it was wrapped around Emory's brain stem and stuck to important blood vessels and nerves that control the most fundamental of functions. The neurosurgeon thought that through careful monitoring, all nerve functions had remained unharmed with the possible exception of the nerve controlling swallowing. We would have to wait to see how Emory recovered before knowing. Later, the neurosurgeon told us that removing (all of) Emory's tumor was one of the most dangerous things he had ever done. We are grateful for the expertise of Dr. Singhal and his team. We are also forever grateful to the people who were praying for Emory throughout his surgery.
We had a sense of elation at the conclusion of the surgery. Emory was still alive and we had hope that he would be the same boy as before.
In the days following his surgery, we have experienced many difficulties--Emory's trouble breathing after the removal of the breathing tube (every part of my body cringed as my baby writhed for breath); Emory's swallowing abilities have not returned yet (as of mid May) to where he can have food or liquid orally without risk of aspiration; the hospital is a hard place to be with many families experiencing heartache, some left with less hope than us.
Another crushing moment came for us when we heard the results of the pathology report about a week after the surgery. Emory's tumor was found to be a grade 3 (or anaplastic) ependymoma, a fast-growing cancer with an almost certain chance of recurring in as little as a few months. Now chemotherapy.
We hope the best for our strong boy. We love you, Emory.
Things have been pretty good with Emory recently, so I feel there is not much to report. Progress with oral feeding has stalled out. He is still resistant to solid foods and hasn't made the connection that eating is a necessary part of living. Our pediatrician basically said that overcoming a food aversion in a toddler is like trying move a boulder without touching it. All we can do it provide him opportunities to eat and hopefully he will eventually get it. Since Emory seems to be on the slow track on getting off tube feeds, we decided to switch him to a blenderized diet (meaning we blend real food to put through his G-tube as opposed to formula). So far he is tolerating the switch quite well.
We also received some cautiously good news from Emory's ENT doctors. During his last visit, the scope of his throat may have shown that his paralyzed vocal cord has started to move again. His doctors was 90% certain he saw them move. This would be fantastic if true since it effects both Emory's speech and swallowing.
We are discovering that some of the best therapy for Emory development is to just simply put him around other children. Our local community center has several drop-in activities for toddlers and Emory is becoming more and more of a regular there.
Next week, Emory has a checkup on the state of his hearing. Hopefully his hearing loss is stable (or maybe even improved!). Hearing loss from chemo typically doesn't settle until 6-8 months after treatment ends, so the jury is still out what the damage will be.