A life cut short, a reason to ride
RANDOLPH, Aug. 6, 2008 – Naomi Drown grew up in Northfield, the oldest of six children, energetic and outgoing. She danced, participated in school plays, and was artistic and athletic, playing soccer and softball. She loved Scrabble, her American Indian heritage and being involved in her central Vermont community.
She went on to attend Johnson State College, studying psychology and playing soccer and dancing. She taught dance as well at a Northfield studio, A Step Above. And in March of 2007 when she moved to Virginia to begin life on her own, athleticswere again apart of the mix. She worked as anaquatic director in a fitness facility.
It was there that the young athlete suffered an injury. “She was jumping rope and broke her foot,” her mother Sandra Drown recalls.
Thinking it was a minor, hairline fracture, Naomi waited before visiting a Virginia doctor. When she did seek medical care two weeks later, an X-ray revealed what medical professionals there thought was an infection in her foot. Surgery was scheduled.
“They were going to scrape the bone and take out the infection, but when they got in there, they knew that it was a tumor,” her father Frank Drown says.
A biopsy was taken, and on Aug. 14, 2007, at age 24 Naomi was diagnosed with cancer. The Virginia doctor told Naomi at her bedside and then immediately phoned her parents in Vermont.
“I just started screaming ‘no,’” Sandra recalls at hearing the news her daughter had cancer.
“Get her home” was family’s next reaction, says Frank.
Sandra flew to Virginia the following morning, packed up Naomi and her things, and drove back to Vermont for a 10-month battle with an evil even greater than first imagined.
Naomi had Ewing’s sarcoma – a rare cancer that affects both bone and soft tissue and generally is found in children during puberty when bones grow rapidly. And, worse yet, Naomi’s cancer had metastasized.
Tumors were found in her spine, shoulder and lungs.
“When I brought her back (to Vermont), there was an 80 percent chance that she would be cured. Once it metastasized, it became a 20 percent chance,” Sandra says.
Ups and downs, elation and devastation, and lots of travel, followed.
The family put 40,000 miles on their car driving between Beth Israel Deaconess Medical Center and Dana-Farber Cancer Institute in Boston, Dartmouth-Hitchcock Medical Center in Lebanon, N.H., and Gifford Medical Center in Randolph.
After a bad reaction to a chemotherapy drug, Naomi initially showed drastic improvement, the family says. “We had this epiphany of hope,” Sandra says.
Then bad news again. The cancer was growing and spreading again, and Naomi was getting sick. Her blood cell and platelet counts were falling, leaving her susceptible to illness. Finally at the end of April she had to stop chemotherapy.
Pain, fevers, difficulty breathing and hospital stays at Gifford – the Drowns’ longtime health care provider – followed.
“She went into the hospital on Mother’s Day, and she had pneumonia,” Sandra says, tears springing to her eyes, as she relates her daughter’s decline.
Naomi returned home only twice after that – once in May for her sister Aurora’s 10th birthday and then on June 8 for sister Alicia’s baccalaureate. Alicia was chosen as a speaker, and her speech was about Naomi and her disease. On oxygen and in a wheelchair, Naomi listened as Alicia spoke of the fleetness of time. “I learned about time, how precious it really is and how little we have, how every moment should be cherished and used to its fullest because who knows how long it will last, and before you know it, poof, your moment’s gone,” her speech concludes.
By the end of that evening, Naomi was back at Gifford. She hoped to live until Alicia’s high school graduation on June 14. But she ran out of time. She died on June 12.
The Garden Room
In the interim, memories were made.
Naomi wanted to return to Gifford following her sister’s baccalaureate because she was in respiratory distress and scared. “Gifford had become her safety net. She felt very comfortable there,” Sandra says. “Her feeling that comfort gave us a point of relief.”
The Garden Room is a suite in the hospital specially designed for dying patients. It has a private patient room with French doors opening to the hospital’s Courtyard Garden and a small living area for family members.
Naomi celebrated her 25th birthday there. “I planned this huge surprise party,” Sandra says. The room was overflowing with family and friends. “It was wild.”
And when Naomi returned to the suite on June 8, it again was filled with loved ones. At least 30 family and friends converged on the Garden Room for Naomi’s last days. “Everybody was there,” her father says.
They slept on pullout couches and cots, were fed by the hospital’s kitchen staff and sat with her in the garden. “We love to be outside,” Sandra says.
Naomi had free massages and acupuncture for pain management, and in the early morning hours of June 10 welcomed a rather unlikely but anxiously awaited visitor – a hairless kitten.
Her family had the kitten flown in from a breeder in Colorado for Naomi, who was allergic to cat hair and always wanted one of the furless creatures. On June 10, Naomi, her new kitten and her family were photographed by Braintree professional Janet Miller. In the afternoon, hospital nurses held a “baby” shower for the cat that the family has since named “Gifford.” “It’s a boy,” read balloons. The kitchen staff brought up a large cake and “literally the whole corner of the room was gifts for Gifford,” Sandra says, smiling at the memory.
“Stuff like that would really have been unheard of someplace else,” she says. “Those are the memories that will be with you forever.”
For Naomi, says Frank, “There wasn’t any place else for her to be other than that Garden Room. Words can’t express the feeling of the Garden Room.”
And there was no other place for the Drowns than Gifford. The hospital supported the Naomi and the family’s wishes, welcomed the large family – and the cat – without a word about noise or visiting hours, and even made house calls, Sandra says. Naomi’s pediatrician, Dr. Lou DiNicola, was available by pager day and night throughout Naomi’s illness and sat by her bedside in Northfield in her final hours.
It had been Naomi and her family’s wish for her to die at home. On June 11, they came by ambulance to their Union Brook address, where cars lined the streets and the house bustled with family and friends.
On June 12, the online journal maintained primarily by Naomi during her illness at www.caringbridge.org/visit/naomidrown received one of its final – and most tragic – posts.
“Our sweet Naomi passed away this afternoon at 3:25 p.m. surrounded by her loving family. She passed peacefully and was in no pain. Heaven has a beautiful new angel today.”
The Last Mile Ride
The special services dying patients like Naomi receive in the Garden Room – the massages, acupuncture and professional photographs – were paid for Gifford’s annual Last Mile motorcycle ride.
Others have been married in the Garden Room, had the hospice singing group River Bend at their bedsides or received Reiki from a team of volunteers. One patient with late stage breast cancer got her wish to attend a Boston Red Sox game granted. All patients’ families receive bereavement mailers and other support. And two more members of the Gifford staff – nurses Pam Fournier and John Young – were specially certified in palliative care this year thanks to the money motorcyclists raise through participation in the ride.
Fournier is Gifford’s palliative care manager. “We try to tailor care to the families and what they need,” she says. “For me, it (the Last Mile Ride fund) makes things possible. It just helps me think outside the box.”
“It gives us a separate, whole new level of creativity,” agrees Dr. Jonna Goulding, a family and palliative care physician and a member of the hospital’s Advanced Illness Care Team.
“It’s nice to know that the fund of money is there to get the patient the services they need,” adds Gifford social worker Sandy Conrad.
Having their daughter’s needs met, meant the world to Sandra and Frank Drown. Knowing motorcycle riders from their and many other area communities helped provide those services through participation in the ride is all the more meaningful.
A former rider himself, Frank recalls the saying popular with particularly Harley enthusiasts: “‘Ride to live. Live to ride.’ It fits what they’re doing for the Garden Room, because the Garden Room in a lot of situations is the last ride.”
“God bless you for doing this,” he tells motorcyclists joining the ride.
The Drown family today
Frank Drown of Northfield describes his late daughter, Naomi, as “a girl not afraid to speak up. And she was a very likable girl.”
“A very lovable girl,” corrects 10-year-old Aurora, Naomi’s sister and Frank’s second youngest daughter.
The Drown family is equally lovable, and incredibly loving. Close knit despite their size – now five kids and mother and father – the Drown family has spent the two months since Naomi’s death on June 12 at age 25 living out some of her final wishes.
She had hoped to make the family’s annual trip to the beach in Maine this year, and so the family went, coloring shells in her memory and tossing them into the ocean. She wanted to clean out an old herb garden behind the family’s home and plant it anew, and so they did. She wanted to go camping, so they went. And she wanted to go to Parc Safari in Canada, and so the family is planning to go.
Weekly visits from a home health therapist help the family cope. And while talk of Naomi brings tears to mother Sandra Drown’s eyes, much of the discussion and family interaction is surprisingly upbeat, warm and laughter-filled.
They still have “Gifford” the cat. Naomi, who was allergic to cat fur, wanted a hairless cat. Her family found one just days before her death and named it Gifford because it had stayed with her during her final days in the Garden Room for dying patients at Gifford Medical Center in Randolph.
Now five months old, the cat, which feels like the fuzzy skin of a peach, is all ears, bulging eyes and scrawny legs. The family carries him around the home like they would any beloved pet and joke that “he’s so ugly, he’s cute.”