Jacob’s Story – Becoming a Hero

Megan Morrey CCAM, Stories

On an otherwise unremarkable day in June 2015, Nicole noticed something about her son that seemed harmless at first – he was limping.

She wasn’t immediately alarmed, but some mother’s instinct told her that this wasn’t normal. She took him to see the doctor, who ordered more tests. After four days of bouncing from urgent care to Jacob’s primary care doctor, and after blood tests and x-rays, doctors told Nicole that Jacob had something called myelodysplastic syndrome, a disorder caused by Jacob’s blood cells not working properly. This disease can slowly develop into leukemia.

Jacob was immediately admitted to Rady Children’s Hospital in San Diego, where he and Nicole were told he’d need a bone marrow transplant as his disease slowly turned into leukemia. Doctors started him on a chemotherapy treatment to keep the disease at bay, but three months later, Jacob was officially diagnosed with Acute Myeloid Leukemia M7, a very rare and hard-to-treat type of cancer. Never did Nicole imagine that this was the news she’d be getting when she brought Jacob to the doctor for a limp.

“I actually had to leave the meeting when they told me the diagnosis,” Nicole said. “I just felt totally bombarded by information and I was overwhelmed – I needed a moment to just step out and absorb this news I just got before I could take in anything else.”

In preparation for his bone marrow transplant, Jacob endured treatments of three intense chemotherapy drugs, all of which come with scary side effects like hearing loss and a compromised immune system. Jacob’s constant appointments, hospitalizations and blood transfusions meant that waiting rooms and hospital beds, rather than playgrounds and classrooms full of friends, were his new normal. When Jacob started losing his hair, he took it pretty hard.

“It really scared him when his hair started falling out,” Nicole said. “He would hide the clumps under the hospital bed because it made him sad to see them. When it grew back, he didn’t want to get a haircut for a long time – he still doesn’t want it cut too short because he gets worried it won’t come back.”

In January 2016, after three grueling rounds of chemotherapy, Jacob was finally ready for his bone marrow transplant. Thankfully, this often risky procedure worked and Jacob was declared cancer free not long after.

However, thoughts of cancer for Jacob and his family are never far away. Treatments for AML M7 haven’t improved in years, meaning even after three rounds of chemo and a bone marrow transplant, there’s still a 40 percent chance of the cancer coming back. Even years after Jacob’s last treatment, this thought still sticks with Nicole.

“When they told me that 40 percent recurrence statistic, I kind of lost it,” Nicole said. “My biggest hope for him is that the cancer never comes back.”

Now 6 years old, Jacob is still facing many of the side effects caused by his chemotherapy drugs and transplant, but he’s powering forward. Side effects from chemo mean Jacob has tubes in his ears to prevent frequent ear infections. Because Jacob’s immune system is still vulnerable, he has to keep his school supplies separate from other kids in his class, and he’s learned how to always wash his hands. Despite these things, Nicole works hard to make sure Jacob doesn’t feel too different from his friends. When he does have to feel different, she wants him to know it’s because what he’s overcome has made him strong and powerful.

“He used to be pretty insecure about the scar on his chest from his port,” Nicole said. “So I told him it makes him a superhero, and that that’s where the doctors put his super juice to make him better. He loved hearing that. Now he tells anyone who notices his scar that he has it because he’s a hero.”

Support Research for Kids Like Jacob

Treatments for Jacob’s kind of cancer haven’t improved in years. Learn how you can get involved and support researchers who are working on the next big breakthrough for kids like Jacob.

Get Involved