#BakerTough

Norman family raises awareness about rare cancer, shares infant son’s journey

BY: Callie Collins

Morgan and Chance Grubb sound like typical parents of small children as they talk about milestones like starting school, sleeping through the night and learning to crawl. Their sons, Cooper, 5, and Baker, who will be 1 in July, keep them busy.

Like so many families at this life stage, the days are long but the years are short, occupied with the constancy of care all children require. Despite the familiar details of the Grubb family, an extremely rare diagnosis is now also part of their daily life.

Baker, 10 months, is the world’s youngest Langerhans Cell Histiocytosis patient. A rare form of cancer, the disease causes lesions throughout the body. The only newborn with the condition specific to the lungs, Baker was diagnosed at just under a month old, despite an otherwise uneventful pregnancy.

Connections to the University of Oklahoma, a lifelong tie for the couple, the OU football season ticket holders found support in the Norman community.

“Baker was a Big 12 Title baby. The Tuesday before he was born, we started talking about naming him Baker,” Chance said, a reference to quarterback Baker Mayfield. “Now, it seems very fitting for the tenacious, tough little fighter we didn’t know that he would have to be.”

Morgan, a nurse, was in a minor traffic accident on the way to work at OU Medical Center while 35 weeks pregnant. Her mother-in-law, who also works at the hospital as a perinatal clinical nurse specialist, insisted she get checked out. She turned out to be in labor and proceeded to have a c-section.

“It was a pretty crazy two-hour span. We went from the work week about to end, being a regular Friday, to having a car accident that was more of an annoyance than any real risk, to having a baby who then went into the NICU,” Morgan shared.

Baker had trouble breathing from the very beginning.

“We were waiting there in the operating room for our newborn son to cry and that didn’t happen,” Chance remembered. “Usually, when you have a baby, you see him right away and really get to look at him. Not this time. They held him up for me for just a second then took him off to the side.”

Although respiratory insufficiency is not uncommon in premature infants, Baker had to be resuscitated multiple times during his NICU stay. His right lung collapsed and doctors also noticed an unusual number of skin lesions.

A CT scan the day before discharge later showed lesions were also visible on his lungs. No other Langerhans Cell Histiocytosis patients had ever been as young as Baker.

“When we went home, there was still a possibility that maybe Baker wouldn’t require further treatment,” Morgan said. “We went from being NICU parents to cancer parents in a flash. Baker’s diagnosis came at a follow-up appointment the next day and it was definitive. His lungs were full of lesions and an oncology consult followed.”

At that point, the couple made a decision to take a positive approach: “We can’t give up because we made a commitment to our children,” Chance said. “The most important thing we can do is not give up.

“We want to be advocates for the families with this disease. It’s rare. This is the first known case of being present in a newborn. We want to raise awareness about this disease.”

Baker started treatment in September and continues to receive chemotherapy at Jimmy Everest Center for Cancer and Blood Diseases in Children at The Children’s Hospital. He receives daily injections for one week every month.

The COVID-19 pandemic has limited Baker’s visits to the hospital, but his labs are checked each week.

“Everyone is worried about the same things we’ve been worried about now because of COVID and for us, it’s magnified to a whole new level of awareness and caution,” said Chance. “Hand sanitizer became a religion for us. There was one point where Morgan got sick and she had to quarantine herself in one part of the house, then I got sick and had to quarantine myself to another section. We’ve been living the way a lot of families are now with the virus for almost a year.”

The family has adjusted to their new normal, including new big brother, Cooper.

“Introducing a baby brings a new dynamic to any family, but this circumstance is really different for a kid who’s 5 and now knows more about getting sick than other kids his age,” said Chance. “He didn’t ask for any of this. We have friends that will come pick him up and take him to the water park for the day. Grandparents will take him to a movie. There are times we’re definitely distracted as we deal with the symptoms of chemotherapy in a baby like nausea, vomiting, irritability and lethargy.”

Support from friends and family makes an important difference, as well as from the broader community. The family started their website, bakertough.com, and social media accounts to keep everyone informed.

“I work in IT so it was second nature to me and our therapist recommended it as a form of emotional journaling and so we didn’t have to keep explaining the same issues over and over again,” Chance explained. “We knew people cared. They wanted to know and wanted to help.”

The website is usually updated quarterly while their social media schedule has a more fluid approach. Lincoln Riley liked and commented on a recent post and, within the Norman community, friends of friends and beyond follow the Grubb family.

A meal train and a GoFundMe have helped with practical household needs.

“That assurance of knowing people are there for us is huge. Once we got past the initial announcements and social media set-up, I feared people would forget about us but that hasn’t happened,” Morgan said. “We still get shout-outs on social media, people still care and they are still loving on us even from a distance.”

The Grubbs remain focused on Baker’s treatment, taking care of Cooper and raising awareness about Langerhans Cell Histiocytosis.

“We want you to know about this diagnosis,” said Morgan. “If donations go to the American Cancer Society, funding doesn’t necessarily go toward the research for histiocytosis. That weighed heavily on my heart. Families like ours are part of a club nobody wants to join, first in the NICU, and now this is an even more exclusive club that nobody wants to be part of. It’s this community of incredibly strong families.”

Talking about the disease from a mental health stand point is also an important aspect of both living with an ill family member and reaching out to the family.

“There’s an assumption when you have a baby with cancer that people have to tiptoe around you,” said Chance. He encourages others to get past the awkwardness and know they won’t bring parents down by asking.

“I don’t want you to feel sorry for me. We need help. We need support. Yes, it’s a terrible situation but we’re always going to be positive about it. We’ll figure out a way to handle it because this is our family and it is every day for us,” said Morgan. “There are amazing families that we’ve met who are going through far worse than what we’re facing and they’re doing it without the friends and family we have.”

“You can’t let it define you, because when you do, that’s a victory for the disease. It’s all about positive emotion,” Chance added. “The human spirit is a strong spirit. You’d be amazed at what you can achieve. Nothing good ever comes from a negative emotion.”

Chance admits not every day is positive.

“There is a rollercoaster of emotions we go through on a regular basis but being in a dark place is not good,” he said. “There are parts of me that appreciate this situation. I would have never in 100 years wished for this but it has made me reevaluate what’s important. What used to make me upset is pretty insignificant, considering what Baker has gone through.”

Morgan and Chance plan to host a charity event after COVID-19 concerns subside. In the meantime, they are enjoying their young family as much as possible.

“Baker smiles and I see the pure beauty of it,” Chance shared. “Cooper and Baker sit there and make each other laugh. That’s what keeps us going.”

To learn more about Langerhans Cell Histiocytosis, visit histio.org and keep up with the Grubbs online as Baker celebrates turning 1 this July. – BSM

Advice on how to help if you know someone whose family member is ill:

* Make a specific offer of help rather than broad statements like “Let me know if there’s anything I can do.” Bringing by a meal, completing a household chore or helping with other children in the family may be just what the family needs.

* Start the conversation. “Don’t be scared to reach out to them,” Morgan encouraged. “They need that support.”

* Recognize the situation. “Sometimes, I look at people and I know what they’re thinking but they don’t want to ask about our son who’s sick. I understand the hesitation but just say it. Ask the questions,” Chance said.

From parents, for parents:

* Find others in a similar situation. “Nobody should fight a disease alone,” Morgan said. “I wish I had known about support groups sooner.”

* Leverage social media resources that are available even with social distancing. “We talk to other families with cancer through Twitter and connect with others to find what works,” she added.

* Give yourself grace. “Not every day is going to be a good day,” Chance said. “Give yourself permission to get angry and frustrated before you get backto a positive place.”