×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Emory with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Emory’s Story

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.

Latest Journal Update

unclear MRI results

We got the results from Emory's MRI. The images show that his residual tumor has grown slightly. We were told by his oncologist before Emory started his treatment there can be radiation caused pseudo-progression of the tumor. In this case, the tumor appears to grow some before stabilizing. We hope that is what we are seeing. There is also the possibility that the tumor could actually be progressing, which would be very bad news. At this point it is unclear which is going on.

There is no urgency to pursue more treatment at this time. We plan to scan again in about 3 months and hopefully get a better idea of what is going on. Otherwise, Emory has been a happy and active toddler. Thanks for you prayers!

heart
7 people hearted this

Comments

10 Comments

Diane Emerson
By
Continued prayers for Emory and both of you. Glad you were able to spend the holidays in New York.
Love, Tom and Diane
heart
1 person hearted this
holly grant
By holly grant
Saying prayers for your little man. He has come so far. I pray God continues to protect and heal him.
Emory Is In His Grip!!

Holly Grant
C.O.L.E.’s Prayer Team
www.colesfoundation.org
heart
1 person hearted this
marlene wardle
By Marlene Wardle
HI. just read update and hope that this is stable disease showing pseudo effect of radiation. Sending my prayers your way!
heart
1 person hearted this
Gene Smith
By Gene Smith
Praying. Thanks for keeping us posted. Blessings!
heart
1 person hearted this
Lynn Banks
By Lynn Banks
Praying each day....and praying that in three months you will see no tumor!!! and definitely no growth. I know you are enjoying your very happy, cute and active Emory!!
heart
1 person hearted this
sherry brazzeal
By sherry brazzeal
Praying. ..praying!!
heart
1 person hearted this
Jerry and Ann OSteen
By Jerry and Ann OSteen - Gainesville, Florida
Our prayers continue for Emory! This Christmas I had a special ornament made with a picture of Emory for my Love, Faith and Prayers Christmas Tree. Our prayers continue for him! Thank you for all the updates. He is such a precious child!
heart
1 person hearted this
Sarah Gouzoules
By Sarah Gouzoules
Continuing to pray for Emory!! Sarah Gouzoules C.O.L.E'S Prayer Team www.colesfoundation.org
heart
1 person hearted this
Wesley Parker
By Wesley.
Absolutely praying guys. We have not stopped praying daily for Emory since the day we first met him. I don't pretend to know what God has in store but every time I pray I ask for healing and a long, full life. Love you guys.
heart
1 person hearted this
Mechon & Tommy Ebanks
By Mechon & Tommy Ebanks
Sorry to hear this but praying so hard that this is just radiation effect (pseudo progression) and the next scan will be clear... Kisses to Emory from Team Mimi!
heart
1 person hearted this