Emerson is a 12-year-old 6th grader who enjoys swimming, piano, shopping and hanging out with her friends.
Right before Emerson’s 10th birthday at her annual eye exam, our eye doctor noticed a condition called Nystagmus in her left eye that he had never noticed before. That led to several doctor appointments and ended with an MRI which showed Emerson had a large mass behind her left ear.
I will never forget the next day as we sat across from her neurosurgeon and oncologist staring at that large tumor and not knowing what it meant. We did not bring Emerson along for the first meeting with neurosurgeon and oncologist, as we had her 10th birthday party planned that very night and didn’t want to ruin that for her. That was on a Friday, and we did not tell her until the following Tuesday. It was the longest five days, and I just sat watching her thinking so many thoughts. What was this mass in her brain doing to her? How did this happen, or what did I do during my pregnancy to cause this? What damage will the removal of this mass do to her and what will the outcome be after surgery? Is it cancer and will she survive?
We met with Dr. Bendel, her oncologist, along with so many at Children’s, to tell Emerson that following Tuesday. Before going, we told her they found something on the scans, but not to worry. It was devastating telling her, and she thought they were going to remove it that day. She was worried about losing her hair and just plain scared.
We had to wait two LONG weeks until surgery due to the neurosurgeon going out of the country. There was lots of anxiety and headaches those two weeks for her. There was lots of lying in her bed with her at night trying to answer questions I really didn’t know the answers to. I would try to be strong, and then go cry in the shower. Trying to be strong for her was so hard but that’s a mom’s job…right?
It seemed so surreal and frightening. Emerson endured a 10-hour craniotomy to remove the tumor. Unfortunately, they had to leave a shell of the tumor in because it was so intertwined with vital nerves.
Total removal could have meant possibly never walking again, permanent feeding tube and other things we didn’t even want to think about. Their hopes were that the remainder of this benign Acoustic Schwannoma tumor would die off. After her surgery, Emerson spent the whole summer at three different therapies five times a week. The tumor affected her swallowing, and she had to relearn how to swallow and eat. She is deaf in her left ear and wears hearing aids, and the tumor affected her balance which led to a broken ankle last fall. And she has paralysis on the left side of her face which means she doesn’t have her beautiful full smile.
I think one of the hardest things for both Gary and I was seeing only half her smile and not knowing if we would ever see it again. We both mentioned to one another that going home and seeing all the pictures of her with her full smile was devastating. My artwork on our walls at home are my three children’s faces and now, in one day, everything had changed. It is still hard, two years later, not to see her big full smile but our hopes are that with her latest surgery, it will be back. Now it’s just a waiting game, but the doctors have told us Emerson is making wonderful strides that they haven’t seen before. It’s so promising, but so scary as a parent and knowing what a cruel world it will be for her if her smile isn’t restored. Emerson seems to deal with it better than me most days…I believe she is stronger than I am every day.
They believe Emerson was born with this tumor, and after genetic testing, they have come to the conclusion that her tumor is just a fluke. At her 3-month MRI following her surgery, we found that the shell of the tumor had grown. In the fall of 2015, she endured almost seven weeks of proton radiation therapy at The Mayo Clinic in Rochester to destroy the tumor. The MRIs after radiation showed some swelling and growth of tumor which the doctors all told us were normal after radiation. Her last MRI in November showed a slight shrinkage of the tumor which leaves the doctors hoping the tumor is stabilizing and will remain stabilized. This was the first time we have waited six months instead of three for the next MRI. We pray the next MRI will show that the tumor is stabilizing— there is no cure for her tumor if it continues to grow.
This past April, Emerson endured an 8-hour facial surgery to restore her smile on the left side of her face which involved 3 different procedures. On her left side, the surgeons hooked up her smile nerve to her chewing nerve and transplanted a nerve from her calf to the right side of her face, the working side, and graphed it to give her smile more power. It can take up to 4 to 18 months for the nerves to regenerate and to see any results. The surgeons also did some injections in her left paralyzed vocal cord to thicken it and help with swallowing and eating issues.
For the past two years, Emerson and our whole family have lived with many unknowns and through scary moments. She has missed so much school, but still perseveres and gets great grades.
Written by Kim Kowalkowski
My husband and I live in Elk River, Minnesota where I am a stay-at-home mom of Emerson, two boys and two crazy dogs. Emerson’s continued therapies, MRIs and appointments keep me busy along with volunteering at the boy’s school during the week.