October 20, 2021
Adenoid cystic carcinoma caregiver: Finding the right treatment plan for my daughter
BY Seana Johnson
When my daughter, Preslie, was eight years old, I noticed that her left eyelid seemed to be a little droopy. But I never expected it to be a type of cancer called adenoid cystic carcinoma of the lacrimal gland. Her left eye just was not symmetrical with her right eye. I didn't want her to feel embarrassed about it, so I didn’t bring attention to it. Her regular eye checkups never showed anything out of the ordinary discovered.
But by the time Preslie turned 12, my husband and I noticed how much different her left eye looked. It was drooping, and she was always rubbing it. We made an appointment with an optometrist.
That appointment started out normal. Then the doctor asked to see me outside of the room. She told me that Preslie needed to go to the emergency room right away for an MRI.
I will never forget the look in her eyes as she told me this. Being optimistic and hoping for the best, we went straight to the hospital.
Undergoing eye surgery for a closer look
The MRI showed a mass behind Preslie's left eye. They told us it was a hemangioma, a benign tumor. They let Preslie go home but wanted us to see a surgeon.
The next day, a surgeon took one look at her scans and said it was not a hemangioma and needed to come out right away.
Preslie had surgery the next morning. The surgeon was not able to remove all the tumor but told us that a rush was put on the pathology report. A week and a half later, Preslie was diagnosed with a rare eye cancer called adenoid cystic carcinoma of the lacrimal gland.
Finding the right adenoid cystic carcinoma treatment plan
The first oncologist we met with gave us a very intense treatment plan. She had never treated this type of cancer before and advised us to get a second opinion at MD Anderson. But first, she wanted Preslie to start treatment that week. That did not feel right to me. I knew in my heart this wasn't the right course for our daughter.
I did some research and learned that the treatment plan she prescribed for Preslie would not have worked on her cancer. I knew we needed an oncologist that had experience with this specific cancer. A friend sent me information on Bita Esmaeli, M.D., an ophthalmologist and orbital surgeon at MD Anderson who is renowned for remarkable advances in lacrimal gland cancer treatment. I knew we needed to see her. We made plans to go to MD Anderson for an appointment with Dr. Esmaeli. Prior to the appointment, Dr. Esmaeli called to assure me not to worry and that finding the right treatment plan was the most important part.
At our first appointment, I knew that Dr. Esmaeli was the right doctor for us. She is very wise and kind. After more scans, she saw a lot of the tumor left from Preslie’s first surgery.
Preslie’s care team recommended another surgery to remove the remaining tumor and the lacrimal gland itself, followed by proton beam radiation and chemotherapy.
A second eye surgery, chemotherapy and proton therapy
On Dec. 14, 2020, Preslie underwent a four-hour surgery with Dr. Esmaeli. When I was able to see her, I was amazed at how good she looked. The recovery from this surgery was much easier. Her eye never even bruised.
After healing from surgery, we met with radiation oncologist Steven Frank, M.D. He also had experience treating this exact cancer. We knew we had the right team. Dr. Frank made us feel comfortable and put us at ease.
In January, Preslie started six weeks of proton therapy treatments at MD Anderson’s Proton Therapy Center along with five weeks of chemotherapy at MD Anderson Children’s Cancer Hospital. Preslie handled chemotherapy and proton radiation like a champ. We had wonderful experiences everywhere we went at MD Anderson. Preslie’s nurses, doctors and therapists were amazing. Everyone made us feel so at ease, even amid a pandemic.
Ringing the gong and thriving after adenoid cystic carcinoma treatment
On March 5, Preslie got to ring the gong to celebrate her last proton therapy treatment. We were so proud of her. It wasn't easy, but she never complained.
About two months after she finished treatment, we could tell Preslie was feeling back to normal. She was cracking jokes and smiling all the time. We were so glad that everything seemed to be out of her system.
Preslie returns to MD Anderson for scans every few months to check for recurrence. Even as we move forward, we can look back at our time at MD Anderson and remember some fun, happy memories. We don't look back on our time during her treatment with sadness. We are grateful to have found the right people who knew exactly what to do with her rare cancer.
Advice to parents with children facing a cancer diagnosis
I know how hard it is to learn your child has cancer. What helped me in those early days was taking a deep breath and doing some research. It can be overwhelming with so much information being thrown at you, but finding the right treatment is so important.
Be confident in your child’s care. Speak up if something doesn't feel right. You are your child's advocate, their voice. Find a place where you will be heard. For us, that place was MD Anderson.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
Find a place where you will be heard. For us, that place was MD Anderson.