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    Wednesday, August 17, 2022

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

    Sean MacDonnell, 8, salutes after his promotion to honorary chief petty officer Saturday, June 4, 2022, at the U.S Coast Guard Academy in New London. MacDonnell, son of academy instructor Lt. Cmdr. George MacDonnell, has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)

    New London — For Coast Guard Lt. Cmdr. George MacDonnell, not knowing how much time he has left with his 8-year-old son, Sean, has meant paying more attention and care to the little things and saying yes more. It's meant "a lot of Oreos, a lot of trips to Dairy Queen, a lot of trips to outside baseball, a lot of extra YouTube videos."

    The Coast Guard Academy, a place where Sean has visited for various events and developed an interest in military history, also wanted to do something special. Sean was surprised last Saturday with the designation of Honorary Chief Petty Officer, the youngest person to be named honorary chief.

    He went there thinking he was just going for the retirement ceremony of Chief Adam Noorigian, a family friend. But his father knew otherwise. At the end of the ceremony, Command Master Chief Maria D'Angelo got up to explain that very few civilians or officers achieve the status of chief, that they have to be formally nominated by the chief's mess and get concurrence through every badge in the chain.

    "You have to lead with conviction, care and simultaneously uphold standards. In short, you have to prove you are worth your salt," D'Angelo said. At this point, another officer passed Lt. Cmdr. MacDonnell a tissue, and D'Angelo announced Sean's new title.

    Other attendees began dabbing their eyes, faced with the reality behind this honor: Sean has been battling a rare type of cancer called rhabdomyosarcoma for more than four years, and less than two weeks ago, he started hospice.

    Rhabdomyosarcoma is a type of cancer in which cancerous cells form in muscle tissue, and for Sean, it developed in his neck.

    Sean had a doctor's appointment in early May at Dana-Farber Cancer Institute in Boston. The doctor took a look in Sean's ear and asked him to go to the waiting room so she could talk to his parents. She told George and Christine MacDonnell she had options that likely would not work, options that would take Sean away from home.

    "That was when we made the extremely difficult decision we weren't going to continue treatment," George MacDonnell said.

    The doctor had been honest with the family since the cancer recurred in September 2020 that she wanted to maintain Sean's quality of life, and they have met other parents of sarcoma patients, so MacDonnell said many experiences sort of prepared them for that moment. He said Sean has known other kids who didn't make it, so he knows what's going on.

    Now, the parents are focused on keeping Sean pain-free and giving him the best life they can with them and Sean's 9-year-old brother, Owen. MacDonnell described them as best friends, two peas in a pod — Owen the outgoing one and Sean more shy.

    They made five trips to Disney World in the past year and a half. Sean's favorite is Epcot; he loves Spaceship Earth and the Three Caballeros in the pyramid-shaped Mexico Pavilion.

    Sean also loves baseball, and the Jimmy Fund gave the family its box at Fenway Park, where they had a catered event in early May. Sean also got a "Mets Dream Day" at Citi Field on June 1, when he went to the clubhouse to meet the players. He also threw out the first pitch, to his dad.

    Last month, they spent a week at a house on Martha's Vineyard, a gift through the organization Vineyard Havens, a nonprofit working with the Jimmy Fund Clinic to give families dealing with cancer diagnoses all-expenses-paid vacations. Sean brought his pet guinea pig, Peaches & Cream.

    The family also has gotten professional photos taken, something that's not normally their style.

    'Attributes that I can only wish all Coasties have'

    Sean and his family have been involved in fundraising and awareness around rhabdomyosarcoma. In August 2018, they participated in the Jimmy Fund Radio-Telethon, speaking on air to raise awareness.

    Sean participated in the PMC Pedal Partner program for the Pan-Mass Challenge bike ride fundraiser, meaning he partnered with a team whose members had his picture on their shirts. He and his parents were the faces of The Jimmy Fund's A Chance for Kids & Families program, sponsored by Burger King.

    In her speech, D'Angelo said Sean has served as a role model by participating in fundraising events and educating the public.

    "Sean has been an inspiration to everyone here at the Coast Guard Academy and beyond," she said. "His fighting spirit and positive attitude are attributes that I can only wish all Coasties have."

    D'Angelo explained later that as Noorigian was getting ready to retire, he informed her that the family stopped treatment and asked if Sean could be made an honorary chief. A memo had to be approved by the chief's mess, then D'Angelo, up through the deputy commandant for mission support, to the master chief petty officer of the Coast Guard, the most senior enlisted member of the service.

    MacDonnell said Sean wouldn't stop talking about the ceremony. He was wearing his anchors around the house. Sean's mom bought a Coast Guard chief bumper sticker that's now on Sean's door.

    Members of the Old Saybrook community, where the family lives, also have showed their support for Sean. In the summer of 2018, Old Saybrook police did a "Shorts for Sean" fundraiser, raising money to wear shorts.

    Sean and Owen played Little League, and the members of their team put #1 on the sleeves of their jerseys this year, since that's Sean's number. The team marched in the Memorial Day parade with a banner that said "Strong Sean #1."

    'We're living a nightmare'

    A battle that has lasted more than half his life began when Sean developed a growth on his neck. His pediatrician thought it was probably a swollen lymph node, but it got bigger. Sean ultimately was diagnosed with stage 3 rhabdomyosarcoma in March 2018, the same month he turned four.

    "It was awful," MacDonnell said. "It still is awful. We're living a nightmare."

    Immediately after his diagnosis, Sean started a 42-week chemotherapy cycle in Boston, with 33 treatments of proton beam radiation. The radiation ended in July but Sean continued chemotherapy every week at Dana-Farber Cancer Institute until January 2019, and then took an oral drug every day at home for the next six months. He was declared in remission.

    Sean missed almost a whole year of prekindergarten in the 2018-19 school year but went to kindergarten in Old Saybrook the following year. MacDonnell said that "COVID notwithstanding," the period from July 2019 to September 2020 was "pretty normal."

    The family moved to North Carolina in 2020, where MacDonnell was commanding officer of the Coast Guard cutter Maple, an oceangoing buoy tender based out of Atlantic Beach. Just after getting back from a hurricane in September 2020, he drove back here with Sean for a scan, and the doctors found the tumor was growing again.

    The MacDonnells got the devastating news that it was highly unlikely Sean would survive.

    The family hurriedly moved back to Connecticut, considering Christine is from Old Saybrook, Lt. Cmdr. MacDonnell is from Rhode Island, and Sean's doctors are in Boston. MacDonnell got reassigned as an instructor at the Leadership Development Center at the academy.

    Meanwhile, Sean started chemotherapy again, which occurred for five days every third week from December 2020 to December 2021. Sean got another scan this past January, and the doctor didn't know whether to be worried. MacDonnell said she didn't know if what she was seeing was a recurrence or calcification from radiation. She said she would scan again in April.

    At the beginning of February, Sean started getting dull headaches every day, and then his neck and ear were hurting. He had dealt with varying degrees of drooping on the right side of his face, and when he couldn't move that side of his face, his parents knew the cancer was back. A CT scan confirmed this.

    Sean got on another trial drug, as he had for the first round of treatment. Then came the visit in May, when the doctor told Sean to wait while she talked to his parents.

    "You have two paths, and I don't sit in judgment of anybody for taking either path," MacDonnell said. In the first path, he said, "the kids have no hair, they're sickly, and they're in clinic all the time, and they pass away anyway. Who's that for? Is that for the kid, or is that for the parents?"

    They weren't going to have Sean pass away in treatment if they could avoid it. A hospice nurse is now coming to the house twice a week, and Sean has been experiencing pain and fatigue.

    MacDonnell doesn't know how much longer Sean has, but the experience has made him rethink a lot about life.

    People "too often take life for granted, especially as parents," MacDonnell said. He added that "it's easy as a parent to think it couldn't happen to you, or to take for granted your child's going to outlive you."

    MacDonnell said he says no to more work things than he would have in the past. He'll hear others in the Coast Guard talk about how they were working until 8 p.m. and didn't get to see their kids, and his attitude is, "The work can wait ... Get home to your kids."

    e.moser@theday.com

    Command Master Chief Maria D'Angelo, left, and Chief Boatswain's Mate Adam Noorigian, right, help award Sean MacDonnell, 8, with a promotion to honorary chief petty officer Saturday, June 4, 2022, at the Coast Guard Academy in New London. MacDonnell, son of academy instructor Lt. Cmdr. George MacDonnell, has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)
    Lt. Cmdr. George MacDonnell hugs his son Sean, 8, after he received a promotion to honorary chief petty officer Saturday, June 4, 2022, at the Coast Guard Academy in New London. Sean has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)
    Master Chief Maria D'Angelo, left, and Lt. Cmdr. George MacDonnell talk to Sean MacDonnell, 8, after he received a promotion to honorary chief petty officer Saturday, June 4, 2022, at the U.S Coast Guard Academy in New London. Sean has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)
    Lt. Cmdr. George MacDonnell wipes away tears Saturday, June 4, 2022, after his son Sean, left, received a promotion to honorary chief petty officer at the U.S Coast Guard Academy in New London. Sean, 8, has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)
    Lt. Cmdr. George MacDonnell hugs Command Master Chief Maria D'Angelo, after his son Sean received a promotion to honorary chief petty officer Saturday, June 4, 2022, at the Coast Guard Academy in New London. Sean, 8, has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)
    The U.S Coast Guard Academy recognizes Sean MacDonnell, 8, with a promotion to honorary chief petty officer Saturday, June 4, 2022, during a retirement ceremony for one of the academy's company chiefs in New London. Sean, son of academy instructor Lt. Cmdr. George MacDonnell, left, has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)
    The U.S Coast Guard Academy recognizes Sean MacDonnell, 8, with a promotion to honorary chief petty officer Saturday, June 4, 2022, during a retirement ceremony for one of the academy's company chiefs in New London. MacDonnell, son of academy instructor Lt. Cmdr. George MacDonnell, has been battling a rare type of cancer for the past four years. (Daniel Passapera/Special to The Day)

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