Robert Hood / Fred Hutch News Service
Paul LaGrange couldn’t go home for Christmas this year, so home came to him.
On the day before Christmas Eve, his wife and youngest daughter made the six-hour drive down from Kelowna, British Columbia, to the Seattle Cancer Care Alliance House, where LaGrange, 47, has been staying since late October while undergoing treatment for cancer in his lower spine. He has Christmas day off from his daily, three-hour radiation regimen but not the day before or after, so going home was out of the question.
LaGrange and his family knew, however, that spending the holiday in a “home away from home” for cancer patients, as the SCCA House bills itself, wouldn’t be the same as being at their own house. In fact, they insisted on that.
In discussing what to do about Christmas, he and his wife decided on a handful of guidelines that aimed to banish both overly rosy expectations and reflexive commiserations:
- They would not try to replicate Christmases past.
- They would not wallow in the fact that they would not be home.
- They would use technology to bridge the distance with grandparents, siblings and friends – and ask them to respect rules 1 and 2.
“We’re going to try to keep it relaxed and low key, but still celebrate,” said LaGrange. “I think we can still make it a special Christmas.”
The diagnosis: chordoma
If anyone has grounds to wallow, it is LaGrange. Earlier this year, he was diagnosed with chordoma, a cancer thought to arise from remnants of the embryonic notochord, a cartilage-like structure that serves as scaffolding for the formation of the spinal column. Rare and aggressive, chordomas usually occur in the base of the skull or the lower spine. Because of their proximity to the spinal cord and nerves, they are challenging to treat and require highly specialized care not available in Kelowna, a city of about 110,000 people in Canada’s Okanagan Valley wine country.
LaGrange underwent major surgery in Vancouver in July to remove the tumor and a lower vertebra. Once he recovered and was able to walk again – a spacer bolted into place where bone had been – he started searching for a place to undergo the second phase of his treatment, precision proton therapy, which is not available anywhere in Canada.
Proton therapy is an advanced form of radiation treatment that is especially effective for reaching tumors or remaining cancer cells close to key organs such as the brain stem or spinal cord. Proton beams can be controlled more precisely than conventional photon, or X-ray, therapy. They also stop once they hit the target rather than continuing through the body, allowing them to deposit higher doses of radiation at the selected site while minimizing damage to nearby healthy tissue and the short- and long-term side effects that can result.
Only a handful of sites in the United States offer proton therapy, and at first LaGrange feared he would have to travel to Massachusetts or Southern California for treatment. Then he learned that in 2013, the SCCA partnered with ProCure Treatment Center, Inc., to open a proton therapy center on the University of Washington’s Northwest Hospital and Medical Center campus, the only such facility within 1,000 miles of Seattle.
“I had no idea until six months ago how much is being done both from a research and a treatment perspective here,” said LaGrange. “It’s pretty amazing to be a part of that.”
The fact that proton treatment could be done relatively close to his home was good news. So was the fact that his provincial health plan agreed to pay for it.
Still, the treatment has been no picnic. For starters, it has involved more uncertainty – and anxiety – than anticipated as his medical team figured out how best to reach an area around the hardware now installed in his lower spine. The solution meant the addition of conventional radiation that LaGrange had hoped to avoid. Among the side effects is a relentless fatigue that leaves him able to be up and about for just two-hour stretches at a time.
And although family and friends have visited over the two months he has been in Seattle, LaGrange has spent much of that time on his own. With his career and earnings as a freelance writer on hold, his wife, Olivia Walsh, stayed behind in Kelowna with their 10-year-old daughter Stella to work.
Treatment in Seattle
LaGrange can’t help but worry about how his wife and daughter are doing without him.
A cellist who plays with the local symphony, does solo work and teaches, Walsh is working more than she ever has, LaGrange said, plus managing the house and Stella and fielding hundreds of concerned calls and emails from friends – and the occasional question about why she isn’t down in Seattle with him. Their community, he is quick to add, has been tremendously supportive, holding concert fund-raisers for him, bringing dinners to Walsh and Stella and, most recently, decorating the family’s house for the holidays.
“There’s been tremendous amount of support for her, but at the end of the day she’s bearing the brunt of this,” he said. “She’s also trying to be as strong as she can for me. Being the primary caregiver and supporter – that’s a challenging role.”
LaGrange is especially concerned about how Stella is taking his absence. (An older daughter, Maya, 20, from an earlier marriage is away at college; LaGrange wants her to keep her focus on her studies and says the distance has made it a little easier to manage that.) Because he’d worked from home, he was the one who packed lunch and got Stella (and her mother) out the door in the morning. He was there when Stella came home from school or needed a ride to after-school activities.
Before LaGrange began treatment, he, Walsh and Stella came down to Seattle over the Canadian Thanksgiving holiday, which is sensibly celebrated in October, around the time of the actual end of the harvest season, to check things out. They called it their science fiction radiation vacation.
“Stella was able to meet the doctors and see where I was going to be,” LaGrange said. “It seems to have helped, knowing what the room looks like, just knowing where I am. She knows the people at the front desk, the people in the Shine shop [the gift shop on the ground floor of the SCCA House]. They’ve made Stella feel really comfortable.”
The SCCA House has 80 apartment-like units with various room configurations. LaGrange has one that includes space for a caregiver to stay, which allows room for his family when they visit. The facility has a communal kitchen, a common area where guests can read, play games or do jigsaw puzzles (very popular, according to LaGrange), a media room, a meditation room, a small gym and laundry facilities. The house is within walking distance of the SCCA and also includes a free shuttle there and to the UW Medical Center.
Although LaGrange doesn’t need day-to-day help with bathing, dressing and eating as some residents do, he welcomes the house’s convenient location, amenities and especially the sense of community with other cancer patients and caregivers.
He believes it will be a comfortable place to spend Christmas.
Robert Hood / Fred Hutch News Service
Christmas past and present
Christmas for the LaGrange-Walsh household ordinarily means a big Christmas Eve dinner with siblings and cousins, alternating between the houses of one or the other’s parents. Then there would be Christmas morning with stockings and a special breakfast, followed by a big Christmas afternoon at whichever parents’ house they didn’t visit the evening before.
LaGrange and Walsh discussed the possibility of her and Stella trying to keep Christmas as normal as possible this year by going to her parents’ house, without him. But Stella vetoed that idea: She had spent enough time this fall without her dad.
(Maya offered to come to Seattle for Christmas too, but LaGrange urged her to accept her grandparents’ offer of Christmas in Hawai’i, and plans to see her in February when she will be on break and he will be finished with treatment and back home in Kelowna.)
So with Walsh and Stella coming, the next thing to decide was what to do.
“We spent a lot of time discussing the holidays, and how to manage them,” LaGrange said, adding that he’d advise anyone in a similar situation to have that conversation early on. “What I’d advise people is to make a plan in terms of how you’re going to celebrate, and be clear up front that it’s going to be a different Christmas. Don’t try to replicate it, and also don’t wallow in the fact that you’re not going to be home for Christmas.”
So instead of singing carols at church on Christmas Eve as they usually do, they plan to do carols at the SCCA House for the other patients staying there over the holiday. The house will be about 60 to 70 percent full on Christmas, according to SCCA House staffer Ericka Albright, or about 60 to 100 people, including patients and caregivers.
And instead of hauling presents down from Kelowna and then having to haul everything back, they plan to keep things simple, with stockings in their room and cinnamon buns baked in the community kitchen.
Live trees aren’t allowed in the SCCA house, but LaGrange bought a cardboard tree at the Shine shop and has put up a few decorations. And although his extended family won’t be there, LaGrange anticipates a lot of Skyping.
“My gosh, the technology is amazing,” he said. “My wife was at a concert three weeks ago and had her iPhone on, and I was watching the concert from here.”
Being here, now
He and Walsh have already had conversations with their parents and siblings about what to say – and not say – when they Skype. They learned what not to say the hard way, when LaGrange first left for Seattle and well-meaning friends overwhelmed Stella with sympathy.
“She had dozens of people all day long saying to her, ‘Oh, you must miss your Dad,’ and ‘It’s terrible that he’s away,’” said LaGrange. “All that did was reinforce that I was away. So we’re trying to change the messaging a bit.”
Instead of saying, “We miss you guys” and “It’s awful that you’re not with us for Christmas,” LaGrange and Walsh have urged their parents to ask about Christmas in Seattle.
“It’s a great city and there are lots of things to do,” he said. “Some people plan to come here for the holiday. We didn’t necessarily plan to do it, but let’s enjoy it.”
On the agenda: a Christmas play at the Taproot Theater in Greenwood and other activities that can be done in the two-hour stretches that LaGrange can be up and about, interspersed with movies, puzzles, games and books back at the SCCA House.
“We’ll take advantage of what’s here, now,” LaGrange said. “We’ll go see the gingerbread houses at the Sheraton – we don’t have a huge hotel like that where we live. Next year, that will be something to look back on. We’ll say, ‘Hey, remember when we saw those gingerbread houses? Or when we saw that railroad train in the window at Macy’s?’ That will be awesome.”
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.
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