For the third and most frightening time in his life, Marc Estabrook rushed to the hospital due to the sever effects of his cystic fibrosis (CF). Brought by his mother, father, and brother, Marc was nervous and trembled from a combination of his nerves and his genetic disorder. His respiratory symptoms had worsened, and the stress of starting university life had overwhelmed him to such a degree that his schedule detracted his attention away from CF. His lung function dropped to a dangerous low of 70 percent.
Since he was born, Marc has stood against both emotional duress and complications of health, and, with the support of his family, fights hard to persevere in the face of his own adversity.
Marc was at the hospital to receive a peripherally inserted central catheter, or PICC line, an intravenous form of antibiotic administration where a small pipe is run to the heart and kept in place from days to weeks. Unlike his first two PICC line hospitalizations, Marc was going to be awake during the insertion rather than anesthetized and would feel the PICC line move up his arm, through his shoulder, and down to his superior vena cava.
“I was nervous and shaking, and it had been so long,” said Marc. “I usually never go to the hospital that much.”
The fear was real for Marc and extended to his parents who were nervous to watch their son endure something so unfamiliar. Marc’s mother Robin, a nurse who worked in the very hospital he was being treated, cried in waves of sorrow while watching Marc from a separated observing room. She couldn’t be in the same room as her son while a pipe was run through his body.
“It was very hard to watch,” recalled Robin. “I had to step out because I would start crying, it just broke my heart.”
In his doctor’s opinion, Marc needed a PICC line due to his deteriorating health at the hands of his stressful first quarter. He put on his hospital gown, laid down in a room in which he was separated from his parents, and endured the uncomfortable feeling running through his body in the name of helpful antibiotic treatment.
“It felt like a rat was slithering up my arm,” Marc said in describing the line moving through his body.
The pain was overshadowed by the light medication and uncomfortable feeling, lasting around 20 minutes.
“The moment when I started to become numb, it was hard to look away when someone Is putting an IV in you,” Marc said. “That’s when I started to shake and tremble”
The procedure was a success. The nurses even let Marc listen to the kind of music he so desired: the Pentatonix Christmas Album. While the risk was minimal, the fear was very real, and the realization of what more could come on Marc’s journey had sunk further in. cystic fibrosis was and would continue to be an ongoing and internal battle for Marc Estabrook.
A freshman, Marc would spend the first weeks of his second quarter at Seattle Pacific University in the hospital and at home, enduring hours of treatments to fight his intensified symptoms. At home and back at SPU, Marc spent over six hours a day treating himself with antibiotics via his temporary PICC line. Treatment, however, isn’t out of the ordinary for Marc.
Every day, for most of his life, Marc woke up with masses of phlegm built up in his lung and a painful urge to hack them up. Each morning is a gamble as to whether or not his coughing could cause him to vomit. The strain that remains has often caused Marc headaches and muscular tension that lasts throughout the day. Marc has also gotten used to being treated by a vibrating chest vest and a saline vapor two to three times a day. Both treatments work to break away his mucus and keep his airways clear.
Cystic Fibrosis, by nature, affects many parts of the body; as such, Marc has a myriad of other precautions he has taken to prevent his symptoms from worsening. This regimen includes a plethora of vitamins, supplements, and medications designed to reduce Marc’s symptoms and promote a healthy form of treatment. He takes over twenty pills a day.
Once, in junior high, Marc was set to go on a class trip to the nation’s capital. He was all set to go, his mother was even joining him on the trip as a chaperone. Upon arriving to the airport, Marc grew violently ill and rushed himself to the closest bathroom he could find. He was nauseous for over an hour, missed his trip, and had to return home, sick and disappointed.
“You miss a lot of things that you’re excited about,” Marc said.
Later, Marc and his family discovered that the effects CF has on the digestive system had caused the problems before the trip. In high school Marc’s CF would disturb his digestive system to a degree even more severe. Marc grew an ulcer in his stomach that lasted through high school and triggered him to go to emotional counseling.
Marc’s treatments haven’t been for naught, as his level of health is far greater than most with CF, given that a large majority don’t live into their 20’s and even fewer live past the age of 40. Marc attributes a majority of the CF cases to a lack of self- discipline and access to treatments; he feels that most people let themselves go when it comes to treating themselves.
“I’ve been really patient with my treatments,” Marc said. “Most people with CF, their health starts going downhill because they aren’t as cautious and don’t take care of themselves as well.”
Earlier this year, eating a casual dinner with their mutual friend Jessica, Marc and his younger brother Matt weren’t giving thought to more than the conversation at hand. The mood was light and positive. It wasn’t until the discussion turned to Marc’s symptoms with CF that Matt and Jessica met eyes in a mutual concern.
“We both got a feeling about something Marc had said at dinner,” Matt recollected. “He was saying things to us that made us feel off. Like his CF was getting worse.”
For Matt, there was always concern, even when he was young. At an age when he was old enough to remember, but young enough to not fully understand his situation, Matt sat in the car with his mother.
“It was somewhere in my middle years,” Matt, 19 years old, recalled of his childhood.
They were on a usual trip to the grocery store, when Matt overheard his mother receive a phone call. There were things he couldn’t fully understand at the time, but he remembered his mother crying in an open sob. The news, he would later learn, was about Marc. His symptoms had worsened; he was coughing up blood.
“She broke down in the car.”
This was the first time it had happened to Marc, and Matt would understand that his brother’s CF was worsening and would continue to worsen as he grew.
“When Marc was born, [my parents] didn’t know what was wrong with him, they really didn’t know,” said Matt. “The day they found out Marc had CF, [our mom] cried for days because she knew what life was like for CF patients.”
In the past couple years, Matt has, in fact, been troubled by his brother’s symptoms more and more, presuming Marc’s health is deteriorating. Stemming from stories similar to the emotional car ride with their mother and the dinner where Marc made comments suggesting he was growing more ill, Matt concern has only grown for his brother and his family. Admittedly, though concerned, Matt would never talk to Marc about the comments he had made.
Marc shares a similar concern, but not for himself, for his family instead. Being the firstborn, and the only one in his household with regularly compromised health, Marc often had the feeling that he pulls the most focus and has often overshadowed his younger brother.
“I’ve always felt guilty because there is so much attention to this disease,” said Marc. “Sometimes I feel like they have less attention on my brother.”
The family dynamic has faced its fair share of hardships due to Marc’s ongoing battle with CF. Ranging from issues between parent and child to feelings of being left by the wayside, the Estabrooks each have felt the scorn of Cystic Fibrosis in one story or another.
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Marc’s hardships have not been in vain, however; even through the pain and time commitments, he has maintained a perseverant attitude. A reason he has works at it is his passion for music.
In his senior year of high school, Marc was granted a wish by the Make A Wish Foundation related to his love of music. His wish: to produce and record songs to be released on a playlist. The experience was one Marc wouldn’t easily trade away. Even now, his selections can be heard playing at Starbucks coffee shops across the nation. He keeps a small set of copies of his playlist, Summer Solstice, for himself so that he may hand them out to friends and family who haven’t heard him play.
“Having my music recorded meant everything to me,” Marc said. “It’s a symbol of my life and one of my greatest achievements. All of these special moments were like building blocks of my self-esteem.”
Examples like Marc’s wish have given him the motivation to take care of himself and keep moving forward in life, despite the physical limits he may have. With the help of music, Marc grew in both his musical skills and the capacity of self-care.
“When I do my treatments, I’ll sit in front of the piano and play to get practice,” Marc said.
Music isn’t the only part of Marc’s life where he has a connection to his CF; in regards to his friendships, Marc hasn’t seen anything but positive impacts relating to his cystic fibrosis.
“CF hasn’t affected my friendships in a negative way,” Marc said. “It has enforced my friendships. I’ve gained more friends since I came out to them about my CF. After I had my Make-A-Wish in senior year of high school, I was more comfortable with myself and I was more comfortable talking about it. Overall, I think there have been very positive outcomes.”
When he was young, Marc was, in his mother’s words, always full of life, even with his CF diagnosis.
“He’s always had such a spirit,” Robin said. “He has always rolled with the punches.”
In one instance in particular, Marc’s mother recalled a very happy memory she had of Marc. Both Marc and Matt were young, Marc around 3 or 4 years old and Matt closer to 2 years old. It was time for a version of Marc’s treatments called clapping: a hand-held piece that is lightly and continuously slapped against Marc’s back to dislodge mucus from the walls of his lungs.
Jealous, Matt would hop up onto their father’s lap after Marc was done with his clapping to get a round of clapping done to himself for no reason other than to fit in.
To pass the time with the treatment, Marc’s parents would play some of his favorite videos they had. One most memorable was their copy of the Sound of Music; Marc would see the characters singing and dancing to the music and Marc would sing along. It was a memory cherished by the entire family.
On dealing with her own child’s journey with Cystic Fibrosis, Marc’s mother spoke to watching him grow up with his disease not holding him back.
“I call him my million-dollar baby,” she said, referring to the money and time invested in Marc to keep him healthy and stable. “He’s been worth it all.”
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