Germinoma caregiver: Why I wrote an open thank you note to MD Anderson

My mother was diagnosed with breast cancer when she was 94. My mother-in-law had it when she was in her 40s. But to my knowledge, there’s no history of brain cancer in our family.

So, when my son, Eric, was diagnosed with pineal germinoma — a type of childhood germ cell tumor — in his brain in August 2021, I was stunned. He was only 24 at the time and had just started his dream job as the new percussion director at a Houston-area high school.

I’ve been a registered nurse for 38 years. My husband is the medical director of a stand-alone emergency room. So, we’re used to taking care of others. But watching our son go through this was very difficult for both of us.

Fortunately, we took Eric to MD Anderson. And we were so impressed by the care and treatment he received there that I wrote an open thank you note to its president, Dr. Peter WT Pisters, and chief nursing officer, Dr. Carol Porter, to share with all of its employees.

My son’s pineal germinoma diagnosis

My son’s symptoms began around January or February of last year. Eric was never cross-eyed as a child, but we started noticing one of his eyes kind of drifting off to the side whenever we talked to him. He was getting self-conscious about it, so we encouraged him to have it checked out. 

The ophthalmologist couldn’t find anything wrong. She diagnosed him with strabismus, the medical term for crossed or misaligned eyes. Eric accepted that and tried not to let it bother him. But the day after his birthday in August last year, Eric told my husband he’d also been having headaches and a little bit of blurry vision for two weeks.

My husband had Eric stop by his emergency room for a brain scan. It revealed a 1-inch mass in Eric’s third ventricle, as well as significant fluid build-up on his brain.

My husband and I knew that MD Anderson is one of the best places in the country to go for cancer treatment. So, we took our son there immediately. Eric was admitted to MD Anderson’s intensive care unit. Neurosurgeon Dr. Betty Kim performed a procedure to drain the fluid from his brain the next day. That’s when she formally diagnosed him with a pineal germinoma tumor.

My son’s pineal germinoma treatment

Neuro-oncologist Dr. Nazanin Majd explained that germinomas are caused by cells that don’t end up where they’re supposed to be in a developing fetus. So, Eric’s tumor could have been growing in his pineal gland before he was even born.

To treat it, she recommended six rounds of intravenous chemotherapy. This shrunk the tumor by almost 90% but didn’t kill it completely. So, Dr. Majd recommended a six-day cycle of high-dose chemotherapy, followed by a stem cell transplant and radiation therapy.

Eric had the transplant using his own cells on Jan. 24, 2022, under the supervision of stem cell specialist Dr. Yago Nieto. Then, he had 30 days of radiation therapy under radiation oncologist Dr. Chengyang Wang. Eric rang the bell to mark the end of his treatments on April 18, 2022. He’s been doing great ever since. 

The hardest part of being my son’s caregiver

For me, the hardest part of this whole experience has been watching my son suffer. 

The high-dose chemo that prepared Eric’s body for the stem cell transplant gave him loose stools for about two weeks. The chemotherapy was so intense that he had to shower and we had to remake his bed three times a day, just so his skin wouldn’t get burned by the secretions in his sweat. He also had to resign from his dream job and move back in with us so we could care for him — just a few weeks after starting it and getting his own place.

Eric always kept a really positive attitude, even when he was at his sickest. But it still broke my heart that he had to go through any of this. Sometimes, I would go in the bathroom and just cry, though I never let him see me do it.

MD Anderson helped my family stay strong

MD Anderson helped us all stay strong. That’s the reason I wrote the open thank you note: because every single staff member we encountered there — from the cleaning crew and food service employees to the doctors and nurses — was exceptional. They took wonderful care of both our son and us.

My husband and I don’t generally broadcast that we’re medical professionals. We’ve found that it sometimes makes people treat you differently. But everyone at MD Anderson made an extra effort to be accommodating and pleasant — even without knowing at first that we were medical professionals. I’m pretty sure they treat everyone that way.

We met a lot of employees during our son’s appointments, treatments and hospital stays at MD Anderson. They were all very professional and extremely helpful in addressing whatever questions or concerns we had. Everybody was so nice that I wanted to make sure they knew we had noticed.

That’s why I wrote a thank you note to MD Anderson's employees. As a retired nurse myself, I know that health care professionals tend to only hear the negative when they get feedback from patients. So, I wanted to make sure that they heard the positive, too.

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