Merrill's Story: Parent's Letter Project Brain tumor- Merrill’s mom

I'd much rather be writing a "dear parent of a child with a broken arm" letter, that "club" is much larger and a much more commonly shared experience among parents. Fortunately our "club" has limited membership. Although we were terrified by the diagnosis when our son was five years old, we were relieved to finally know what had been causing his unexplained headaches, nausea, and on-going illness he had been experiencing for months. Once the CT scan revealed the large tumor, we were rushed directly to Children's National. The on-call resident said, "He'll definitely be admitted," and we also were told he may have surgery that night.

The tumor was about the size of an orange, it was a miracle he was still alive and functioning. Around midnight during an MRI, the radiologist said, "Well, if you are going to have a brain tumor, this is the kind to have." We were hopeful that the tumor was benign, and could be removed surgically. The surgery occurred the following day, on our 14th wedding anniversary. As we ate dinner in the hospital cafeteria, we decided we would go somewhere else for our 15th anniversary.

Merrill pulled through that day very well. The benign tumor was completely removed. Part of his optic nerve was permanently damaged, and he lost his left peripheral vision. He also had several complications, including a subdural hemotoma, meningitis, and skull reconstruction. However, we consider ourselves extremely lucky that he survived with relatively few complications and long-term issues. Actually, when he was diagnosed with Type 1 diabetes at age 12 it was even harder. Now he is facing that disease with incredible patience, even through his teen and young adult years. I think his medical experiences as a small child helped develop his attitude and approaches for coping. He still thinks of Children's as a friendly, good place, which is a real tribute to the excellent care and treatment he received.

I remember launching into another dimension from the moment we were given the diagnosis. I felt as if someone else was in my body, walking through the consultations and tests, and I was observing that person from a distance. I wanted to be strong for my son, so that he would not be afraid. I also wanted to be supportive of my 9-year-old daughter, who didn't understand what all the fuss was about. I developed a sort of sardonic sense of humor, which helped keep things in perspective. Additionally, I learned to keep a bag packed with extra clothes, toiletries, and snacks. I never knew when I'd be spending another night in the hospital.

Our friends and family were really there for us, taking care of our daughter and bringing meals and providing unending moral support. If you aren't taking up offers for such help, please do. If you aren't taking some time for yourself to rest a little, please do. I remember going outside just once a day and feeling the sunshine and seeing the blooming cherry blossoms. It really helped.

As the primary caregiver for your child, you need to find ways to care for yourself. I think of the parents in the waiting rooms now as "egg shell people." Egg shells are one of the strongest structures in nature, designed to withstand strong forces and extreme temperatures. However, they are also incredibly fragile. Remember that you are very, very strong, and will get through this. Remember too that you need to be gentle with yourself and fellow parents, helping each other out in even small ways will make all the difference. See if you can find a smile a day, look at nature, and eat a piece of chocolate!

Welcome to the club you never wanted to join. Now that you are a member, I hope you will reach out to any new members you encounter and offer your suggestions and support. We all need each other.

Sincerely,

Merrill's mom, Janet

Treatment Team

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