Medullobastoma Survivor’s Story | YMyHealth

Mikaya Franklin is a positive force of nature with a sense of determination like few people you will ever meet.

Shortly after graduating college, she began working as a scribe for doctors in her local emergency room, as she prepared for applying to medical school.

Like so many who pursue this career path, she was so laser focused on her work that even after falling multiple times, it took seeing her always excellent penmanship become practically illegible, for her to notice something was not right with her health.

“Being a scribe in the hospital, I took pride in everything looking nice when I wrote down my patient’s information,” Mikaya said. “Eventually, I was squeezing my pencil to try to write better and my writing was so small and looking as if I was back in first grade, just learning how to write.”

That’s when she got scared and decided it was time she get checked out. Incredibly she could not get an appointment for months with her primary care doctor, so she had no choice but to go to the emergency room—the very place she was getting professional experience at.

There, she was diagnosed with a medulloblastoma—a rare type of brain cancer.

“I was living my life, preparing for medical school, and driving around hanging out with my friends, being a regular 22-year-old and then boom,” Mikaya said.

Mikaya and her mom, Josette, share with us the harrowing and remarkable tale of Mikaya’s brain tumor diagnosis, treatment, and fight for her full recovery, all while balancing the demands of graduate school, as she pursues her master’s degree in biology.

What is medulloblastoma?

A cancerous tumor of the central nervous system, a medulloblastoma forms in the area of your brain called the cerebellum. What’s significant about this is that the cerebellum controls our balance, coordination, and movement. So, people with a tumor in this area have problems with loss of balance and falling or dropping things—something Mikaya experienced without knowing why.

Medulloblastomas are typically fast-growing cancers, but they are rare. They affect only 350-500 children and adults combined in the U.S. yearly. Medulloblastomas are more commonly known as a childhood cancer affecting people under age 16, making Mikaya’s diagnosis rarer. However, adults ages 20-44 can develop it.

For young patients, medulloblastomas can have significant impacts including major changes in vision, headaches, difficulty walking or with balance, dizziness, and fatigue.

Life Before Diagnosis

Growing up, Josette describes Mikaya as “a regular, energetic, smart lady full of life and full of love for her classmates and teachers.”

“There was nothing that would have given us any indication that she'd have a major health incident like this,” she said. “We would go to our annual visits for dental and the annual physical checkup, but we were one of those families that said, ‘Why are we paying all this for medical insurance that we never use much of?’”

The family was healthy, not eating much fast food, having no soda around the house, and at least one vegetable at every meal.

So, health had long been a family priority and an interest of Mikaya’s. Yet, despite her college education in science, she had never come across much about brain tumors. That all changed.

Mikaya enjoying a day of shopping in the year before her medulloblastoma diagnosis.

The Diagnosis

Mikaya’s symptoms were like pieces of puzzle that just did not fit together.

First, she noticed that she couldn’t brush her teeth with a fluid motion like she normally did. Then, her vision started becoming a little weird.

“I remember walking through the store—looking side to side at the shelves—and things looking blurry. It took me a minute to focus on what I was reading,” Mikaya said. She thought this was weird. So, she went to the doctor. Her prescription changed, and she got new glasses. Nothing to worry about, she thought.

She does remember her walking being a little off balance. This led to her spilling drinks while walking up stairs, slipping on the stairs a couple of times; and another time falling backwards. While all of this seemed weird to her, the events were so isolated that they didn’t feel alarming.

It was not until her handwriting got so noticeably bad after seven months of these isolated experiences that she decided to seek urgent medical attention. With zero luck getting into her primary care doctor, she went to the very place she was working in to build up her resume, the ER.

After doctors found a mass in her cerebellum on CT scan that was about half the size of her cerebellum, they immediately did an MRI to make sure the tumor was not blocking the flow of her spinal fluid, Josette recounts.

Thankfully, it showed no blockage. So, they scheduled surgery for two weeks later, giving Mikaya and her family some time to plan.

While she remembers her younger brother having leukemia when he was three years old and that piquing her interest in cancer, even after undergraduate courses in biology, Mikaya did not have any knowledge of brain tumors to go on.

“I will say working in the hospital in the emergency room, I kind of was putting things together. It was bittersweet when I started noticing I'm doing the finger-to-nose test with my mom and instead of going back to touch my nose, my finger would touch my cheek.” Mikaya said. It’s something she saw in stroke patients.

“But it's also interesting that I did have that background and was not able to put everything together. My walking, my balance, and my sight were off, and I'm just thinking these are all individual occurrences.”

At 22 years old, after months of isolated symptoms, she was diagnosed with a medulloblastoma.

Navigating Resources and Information

For older and younger people alike, Mikaya says that the most important thing is to “know your body and listen to it.” She did, and thanks to being her own advocate she got diagnosed and started treatment.

Yet when it came to walking the fine line between actively seeking information and letting others guide you, Mikaya for the most part let the information come to her. Even still, the experience was overwhelming. Thankfully, her mom acted as a second set of ears and eyes.

“When you’re going through something like this it’s a bit overwhelming and you need things repeated, even if it’s common knowledge or data. We started with radiation and the packet of information was the size of a small phonebook,” Josette said. “I wish there was another way for patients to get information.”

Mikaya and her mom made a decision early on when sharing the news with their extended family members in a meeting, to make them agree to not Google things and send them. A decision that served them well.

Sharing the Diagnosis and Support Systems

Upon learning her diagnosis, everyone was very supportive.

Her immediate family was an unbelievably wonderful source of constant strength throughout her journey. Her mother and father were there daily with her providing support. Her younger bother was “a very positive light, who was always willing to help and do whatever was needed.”

All of her mom's friends in the beginning were coming to the house and cooking for the family as well. They gave her blankets and candles (which she loves) to help lift her spirits.

Her best friend came to the hospital to see her and kept her spirits uplifted, which was really good.

All of her close friends she told were very supportive, but they were astounded by Mikaya’s attitude in the face of such adversity. She remembers calling them from the hospital the day she was diagnosed.

“I said, ‘Hey, I have a tumor in my brain.’ And everybody was really shy because I was really positive about it. They said, ‘How can you be so optimistic?’” Mikaya recalled.

It is that incredible optimism that led Mikaya through treatment and the unexpected challenges along the way.

Mikaya during one of her chemotherapy treatments.

Treatment Experience and Decision Making

While she was presented with options, being a person with a science background, the decision about which treatment path to take was not a hard one.

“Because medulloblastomas are so researched, they have a plan already that works the best. So, that's what I went with,” Mikaya said.

Her treatment plan included:

A complete, 100% surgical removal of the tumor (which was a complete success).
Repeated lumbar punctures- a very painful procedure that takes samples of fluid from the spine to test for cancer cells.
Six weeks of radiation (Monday to Friday).
Nine chemotherapy treatments (requiring admission to the hospital for 1-2 days every month or so).

For the most part, the doctors told her ahead of time about what she could expect like hair loss, feeling lethargic, fatigued, and sleeping more than usual. But they did not effectively or even adequately prepare her for two things that were specific to her as a young woman and really important.

She was told that a hair specialist would come talk about how to prepare for surgery. At the time, Mikaya had French braids and asked if she should just shave her head. The specialist said, “No,” that all they would do was make a slit down the part and sew it back up. That was not the case.

Instead, Mikaya woke up with a rectangular-shaped bald patch, which impacted every single braid in her hair, losing them all. She then had to wait to shave her remaining hair until her incision had scarred over. They also instructed her to wash her hair every day—something known in the Black community to dry hair out.

Clearly this specialist had no knowledge of women’s hair across different cultures.

Another thing that was handled very poorly and could have had permanent consequences was her fertility.

Despite going through radiation and about to begin chemotherapy, no one had spoken to Mikaya about her future fertility. She said something to her doctor, who sent in a male physician with a cavalier attitude who said to her, “Chemo will make you infertile. So, if you want to have kids naturally, you should probably like freeze your eggs or do something.”

That was Mikaya’s rough introduction into fertility preservation—something she only got to do in the nick of time because Mikaya (along with her mom) was her own health advocate.

Of the two fertility preservation options, the easier one was to fly to Cleveland Clinic and have her ovaries removed and frozen. Then, they would be surgically placed back in when she was ready to have kids. That’s what she wanted.

Very unfortunately because her own team waited so late to talk to her about this, there wasn’t any space in the OR in Cleveland before she was starting chemotherapy in Atlanta. So sadly, she had to go the more painful route.

For two weeks before even began grueling chemo, she had to have hormone shots in her stomach and go through the whole egg retrieval process. Thankfully, it went great, and they retrieved about 29 eggs.

The lack of cultural sensitivity by healthcare providers about her hair and the lack of forethought about her future fertility added unnecessary heartache and pain to Mikaya’s journey.

Mikaya working to learn to regain balance during one of her aquatic therapy sessions. This is one of several types of therapies Mikaya has participated in throughout her recovery.

Impact on Life After Treatment

Mikaya has been cancer free since completing all of her treatment.

Yet, life as she knew it before cancer did not instantly go back to the way it was after cancer. She has learned to adjust to her ‘new normal,’ which is improving with each month.

“Everything got worse at first and not better because I had the tumor removed. So, that was upsetting,” Mikaya said. “I couldn’t walk. So, I had to use a walker and learn how to walk again. I also developed double vision and had to have eye surgery.”

Adding that, “As a recent survivor, its still kind of scary every time I get my MRI, but I guess that will get better with time.”

She knew going straight into a clinical program was not an option, so she chose to deepen her foundation of biology pursuing a master’s degree There and from therapy, she has definitely seen progress in her abilities.

“I used to have accommodations with longer testing times and extensions on due dates, if necessary, and this semester, I have not had to have any accommodations,” Mikaya said.

In addition, she has mastered an extensive schedule of therapies. She has done aquatic therapy with exercises in the water to gain her balance back, occupational therapy to work on her hands, writing, and coordination; and physical therapy to strengthen her lower body and balance with the idea of progressing over time from walking to being able to run and jump.

Reflections and Lessons Learned

Mikaya has always loved life, but cancer made her realize how truly precious it is.

“Before, people would die of cancer, and of course, you don't want to hear that. It's a sad thing. But to actually have had cancer and known I could have died like that, that really kind of messed with me. People could have been talking about me. So, while school and therapy are hard, I'm very grateful to God that I'm still here,” Mikaya said.

While her mom has appreciated Mikaya’s attitude and demeanor about the whole thing, she has also been deeply impressed by her daughter’s wonderful self-advocacy, as she spoke to doctors and therapists. They hope other young people will learn from her story to advocate for their own health and gain perspective.

“I think it's very easy for young people, old people, everybody to get caught up in the little things. I'm not saying it's not frustrating. We're human. But put it in perspective,” Mikaya said. “Even for me, I had cancer and was going through that, but I would think to myself somebody has it worse than me. Let’s think about that.”

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Medulloblastoma Survivor’s Story