Home Cancer Research For 8-year-old with cancer, Old Saybrook family, community and Coast Guard try to make remaining time special

For 8-year-old with cancer, Old Saybrook family, community and Coast Guard try to make remaining time special

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For the Coast Guard Major. George McDonnell didn’t know how much time he had left with his eight-year-old son Sean, so he paid more attention to the little things and meant to say more. That means “lots of Oreo, trips to Dairy Queen, trips out of baseball, lots of additional YouTube videos.”

The Coast Guard Academy, where Sean visited for various events and was interested in military history, also wanted to do something special. Sean was surprised last Saturday that he was nominated as the youngest Honorary Sergeant.

He went there thinking he was going to the retirement ceremony of his family friend, Emir Adam Nourisian. But his father knew it wasn’t. At the end of the ceremony, Command Master Chief Maria Dangero must be officially nominated by the Chief’s turmoil, with few civilians or officers to acquire Chief status, and consent must be obtained through all badges in the chain. I explained that. ..

“You need to lead with conviction and at the same time adhere to the standards. In short, you have to prove that you are worth your salt,” Dangero said. At this point, another officer passed the Major. McDonnell is Tissue and D’Angelo has announced a new title for Sean.

Other participants began to tap their eyes in the face of the reality behind this honor. Sean has been fighting a rare type of cancer called rhabdomyosarcoma for over four years and started hospice in less than two weeks.

Rhabdomyosarcoma is a type of cancer in which cancer cells form in the muscle tissue and occurs in the neck for Sean.

Sean was seen by a doctor at the Dana-Farber Cancer Institute in Boston in early May. The doctor looked at Sean’s ears and asked him to go to her waiting room so she could talk to her parents. She told George and Christine McDonnell that she had an option that could go wrong, taking Sean away from her home.

“At that time, we made a very difficult decision that we weren’t going to continue treatment,” said George McDonnell.

Since the cancer relapsed in September 2020, McDonnell has had a lot of experience at that moment as doctors have been honest with their families who want to maintain Sean’s quality of life and they met other parents of sarcoma patients. Said they prepared them. He said he knew what was going on because Sean knew the other kids who didn’t accomplish it.

Currently, parents are focused on keeping Sean painless and living the best possible life with Sean’s 9-year-old brother Owen. McDonnell described them as her best friend, two peas in a pod, Owen is an extroverted one, and Sean is more shy.

They have traveled to Disney World five times in the last year and a half. Sean’s favorite is Epcot. He loves the Earth of the spaceship and the three knights of the pyramidal Mexican Pavilion.

Sean also loves baseball, and the Jimmy Foundation handed the box to his family at Fenway Park. A catering event was held at Fenway Park in early May.Sean too “METS Dream Day” at Citi Field on June 1st, he went to the clubhouse to meet the players. He also threw his opening ceremony to his dad.

Last month they spent a week at Martha’s Vineyard’s house. This is a gift from Vineyard Havens, a non-profit organization that works with the Jimmy Foundation Clinic to give families dealing with cancer a paid vacation at all costs. Sean brought a pet guinea pig, peaches & cream.

The family also had professional photos taken, but this is usually not their style.

“What I can hope for is an attribute that only all coasties can do”

Sean and his family have been involved in raising awareness and raising awareness about rhabdomyosarcoma. In August 2018, they joined the Jimmy Foundation Radio Telethon and spoke on the air to raise awareness.

Sean participated in the PMC Pedal Partner Program for the Panmas Challenge Bike Ride Fundraiser. In other words, we partnered with a team where members put their pictures on their shirts.He and his parents were the faces of the Jimmy Foundation Opportunities for kids and families a program sponsored by Burger King.

In his speech, Dangero said Sean has served as a role model by attending fundraising events and educating the general public.

“Sean has inspired everyone here since the Coast Guard Academy,” she said. “His fighting spirit and his positive attitude are the attributes I can hope for every coasty.”

D’Angelo later explained that while Nurizian was preparing to retire, he informed her that his family had stopped treatment and asked if Sean could be the honorary chief. The memo had to be approved by the Chief’s turmoil, after which D’Angelo reached the highest enlisted member of the service, the Chief Senior Commander of the Coast Guard, through the Deputy Commander of Mission Support.

McDonnell said Sean wouldn’t stop talking about the ceremony. He was anchoring around the house. Sean’s mom bought a Coast Guard chief bumper sticker that is currently on Sean’s door.

Members of the Old Saybrook community, where the family lives, have also shown support for Sean. In the summer of 2018, Old Saybrook police raised money to wear shorts by raising funds for “shorts shorts.”

Sean and Owen played in Little League, and team members ranked first in Sean’s number jersey sleeves this year. The team marched at the Memorial Day parade with a banner labeled “Strong Sean # 1”.

“We are living a nightmare”

The battle that lasted more than half of his life began when Sean grew up on his neck. His pediatrician thought it was probably a swollen lymph node, but it got bigger. Sean was finally diagnosed with stage 3 rhabdomyosarcoma in March 2018 and turned 4 in the same month.

“It was terrible,” McDonnell said. “It’s still terrible. We’re living a nightmare.”

Immediately after diagnosis, Sean began a 42-week chemotherapy cycle in Boston with 33 proton therapy. Her radiation therapy ended in July, but Sean continued weekly chemotherapy at the Dana-Farber Cancer Institute until January 2019, after which she took oral medications daily at her home for six months. He was declared in remission.

Sean was absent from kindergarten for almost a year in the 2018-19 school year, but went to Old Saybrook kindergarten the following year. “Despite COVID,” McDonnell said the period from July 2019 to September 2020 was “quite normal.”

The family moved to North Carolina in 2020, where McDonnell commanded an officer of the Coast Guard Cutter Maple, a bid for an Atlantic Beach-based ocean buoy. Shortly after returning from the hurricane in September 2020, he returned here with Sean for a scan, and doctors found the tumor growing again.

McDonnells received the catastrophic news that Sean is very unlikely to survive.

Given that Christine was from Major Old Saybrook, the family hurried back to Connecticut. McDonnell is from Rhode Island and Sean’s doctor is in Boston. McDonnell has been reassigned as an instructor at the Academy’s Leadership Development Center.

Meanwhile, Sean resumed five days of chemotherapy every third week from December 2020 to December 2021. Sean received another scan in January this year and doctors didn’t know if he was worried. McDonnell said he didn’t know if he was seeing radiation recurrence or calcification. She said she would scan again in April.

At the beginning of February, Sean began to have a dull headache every day, and then his neck and ears were hurt. He was dealing with various degrees of sagging on the right side of his face, and his parents knew that the cancer had returned when he was unable to move that side of his face. I did. CT scan confirmed this.

Sean took another study drug, just like the first treatment. Then there was a visit in May and the doctor told Sean to wait while talking to her parents.

“You have two paths, and I don’t sit in anyone’s judgment whichever path you take,” McDonnell said. On the first road, he said, “Children have no hair, are sick, are always in the clinic and die anyway. Who is it for? Is it for the child or is it for the child? Parents? ? ”

If they could avoid it, they weren’t going to kill Sean for treatment. Currently, hospice nurses come home twice a week and Sean is experiencing pain and malaise.

McDonnell doesn’t know how long Sean was, but that experience made him think a lot about life.

“Too often people take life for granted, especially as parents,” McDonnell said. “As a parent, it’s easy to take it for granted that it can’t happen to you, or that your child will live longer than you,” he added.

McDonnell says he will never do more work than ever before. He will hear other people on the Coast Guard talk about how they worked until 8 pm and couldn’t meet the kids, and his attitude is “work can wait … Go home to your children.”

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