Five of the members of 6 person Ake family pose outside the Seattle Children’s hospital. Emerson Ake, in the front, is battling leukemia with quiet courage and good humor and his family temporarily moved from Sequim to stay together. Photo courtesy of the Ake family

Five of the members of 6 person Ake family pose outside the Seattle Children’s hospital. Emerson Ake, in the front, is battling leukemia with quiet courage and good humor and his family temporarily moved from Sequim to stay together. Photo courtesy of the Ake family

Sequim a beacon to family in leukemia struggle

  • Friday, October 29, 2021 3:43pm
  • News

When the Ake family arrived in Sequim, it seemed like it would be the last of many changes.

Greg Ake went from being an intelligence analyst in the U.S. Navy to working in cyber security and Jaime Ake was home with the children ever since their first-born, Emerson, came early at just 27 weeks.

“I stopped working so I could be at the NICU with him every day,” Jaime said.

Prior to Sequim, they had landed in Texas, where it was so hot that the children had to spend most of their time indoors. Jaime researched for a place where they could spend more time outdoors, to grow up surrounded by nature.

She found the Olympic Peninsula.

“Sequim is the most perfect place to raise children for us and every day I woke up so crazy thankful to be there and get to spend my days exploring the PNW with my family … It is truly the most amazing place I’ve ever lived in or even known about,” Jaime said in an email interview.

“I love how the mountains are on one side with the Pacific on the other. I love the Farmer’s Market, shopping for groceries at Sunny Farms, doing yoga in the park at Jardin Du Soliel Lavender Farm and buying gifts for friends and family at the shops downtown. It’s so peaceful, safe and quiet … No other place will ever compare.”

The family moved here in the summer of 2020, and quickly got acquainted with the neighbors, made friends and fell in love with the beauty of Sequim and all this corner of the world has to offer.

Ursula Naylor, the Ake’s neighbor, said, “Last year, Jaime said to me, ‘I’ve moved so many times and no one said hello (in any of the neighborhoods)’.”

Naylor said, “That’s not our neighborhood.”

She described a friendly neighborhood with a block party on Memorial Day, where the Akes fit right in.

Naylor said that Jaime regularly baked with the children, sending 13-year-old Emerson or the second-oldest, Jameson, to the neighbors with cookies or muffins.

“She was an avid baker … used a dozen eggs a day,” Naylor said.

Then, during a recent check-up scan of Emerson’s brain, who was born with mild cerebral palsy, the medical team discovered that he has B cell lymphoblastic leukemia.

The treatment for this leukemia has a high success rate, but takes at least two years at Seattle’s Children’s Hospital to defeat.

Treatment can take years

A statement from Emerson’s team, including his primary oncologist Todd Cooper, said, “This diagnosis can change the life of a child and family overnight.

“There have been major advances in our understanding of acute leukemia in children that have led to great improvements in survival. These treatments usually last up to three years and include chemotherapy that Emerson takes by mouth and through an IV catheter, called a port, that lie just under the skin on the upper chest.

“Because cancer cells grow and divide very quickly, chemotherapy is designed to affect fast-growing cells. Normal cells that grow quickly are also affected which makes chemotherapy treatment quite difficult with many side effects.

“Emerson and his family are responsible for managing side effects, monitoring for signs/symptoms of infection, juggling frequent appointments to the clinic and unexpected admissions to the hospital. Many efforts are underway to develop therapies that target only the leukemia cells and spare children from acute and late effects of toxic chemotherapies.”

Indeed, the lives of the Ake family did change over night.

Emerson and Jaime Ake spent a month and half at the Seattle Ronald McDonald House while the younger children, 10-year-old Jameson, 4-year-old Amelia and 6-year-old Arden, stayed in Sequim with Greg.

Greg holds two full time jobs — one with a cyber-security company, and one his own company, Level Effect — that he’s able to do from home.

Ordinarily, the entire family could stay at the Seattle Ronald McDonald house during a time like this. According to Heather Bauer, Director of Annual Giving with the Ronald McDonald House Charities of Western Washington & Alaska, the organization’s mission is “to support families with seriously ill children. Historically, our housing and support services have helped families stay together during their child’s treatment so they can support each other.”

Their services are free of charge for families that live at least 45 miles from the House.

Bauer said, “Unfortunately, the infectious nature of COVID has changed how we serve families for the time being. At the guidance of our partner, Seattle Children’s Hospital, we have limited families to one patient and two caregivers only.

“No siblings are currently allowed at the House to decrease infection risk for our immune compromised patients. We know that can be difficult for families and realize some aren’t able to stay here because they don’t have other care options for siblings. We look forward to a time when COVID risk recedes and we can welcome siblings again.”

Protocols have changed at Seattle’s Children’s Hospital as well.

Emerson Ake smiling in his cub scout uniform in Sequim. Ake and his family have temporarily moved to Bellevue as Ake battles leukemia at the Seattle Children’s Hospital. Photo courtesy of the Ake family

Emerson Ake smiling in his cub scout uniform in Sequim. Ake and his family have temporarily moved to Bellevue as Ake battles leukemia at the Seattle Children’s Hospital. Photo courtesy of the Ake family

Joyce Dubois, nurse coordinator of the Leukemia/Lymphoma team wrote,”It has been difficult to see families have to go through additional challenges, risks, and restrictions with COVID while they are already going through cancer treatment.

“In order to keep everyone safe, there are hospital policies to complete frequent COVID swabs and restrictions on visitors in the hospital.

“However, the silver lining for our patient population is the increased awareness in the community to reduce the spread of illness which is very important since our patients are immunocompromised.

“COVID has also opened up more options for our patients to participate in online school and virtual events.”

Community support

This extended separation has been difficult for the close-knit family, particularly for the younger children.

Jaime’s good friend Beth Vogel explained that it was difficult for the other children to understand what was happening without being allowed in the hospital, and that they missed the constant presence of their mother and brother.

The Akes decided that to stay together they had to give up their rental home in Sequim.

“Everybody misses them,” Naylor said. “All the neighbors. But Jaime said, ‘We’re going to get through this treatment and we’ll be back.’”

It costs $4,000 a month for a normal house in Bellevue right now, according to Vogel — double the price of their rental home in Sequim.

“The market is insane right now,” she said. It was difficult for the Akes to find a place, Vogel said, “but thankfully they found something.”

With rent doubled and out of pocket medical more than $10,000 in-network, expenses quickly piled up for the Akes. Greg had to reduce his working time, so that one parent could be present while the other was going to the hospital or running errands. In the crowded Seattle area during COVID, this necessitated another vehicle.

Back in Sequim, Emerson’s scout leader Rene Nadon brought up the idea for a GoFundMe campaign, which Vogel started.

“Between the cut in pay and doubling of the rent, I thought the GoFundMe page might help them,” Nadon said.

The fund goal is high because the family has several years of financial challenge ahead of them.

A path at the wildlife refuge on Voice of America Road in Sequim, one of the Ake family’s favorite places to go in Sequim. Sequim Gazette photo by Emily Matthiessen

A path at the wildlife refuge on Voice of America Road in Sequim, one of the Ake family’s favorite places to go in Sequim. Sequim Gazette photo by Emily Matthiessen

Vogel said that Nadon talked Jaime into accepting the GoFundMe to help with the expenses.

“(Jaime) said, ‘Other people might need it more,’” said Vogel.

Nadon said, “It really can be stifling financially. Everybody could use a bit of help and that’s why I wanted to do the gofundme.”

“Everybody knows about the GoFundMe,” Naylor said. “The immediate neighbors have all donated to it, but it just didn’t take off. They’re a great family and whatever we can do to get them through this tough period will be wonderful.”

Nadon said the scouts miss Emerson and are holding his place for him. Nadon’s Troop 90 has been in existence for 96 years and he said his goal is to get it to 100 and he is hoping Emerson will be there to celebrate with the rest of the troop.

He said that some of them have sent letters, handmade cards and collectable patches and that they are rooting for him.

Vogel has been using the GoFundMe to provide updates to interested parties on Emerson’s progress.

In her most recent post, she said, “And speaking of ‘the house,’ I want to again thank all who helped the family get into it. Nearly every time I speak with or text with Jaime, she mentions how grateful she is that her family is able to be together now that they’ve moved closer to the hospital.

“Cancer is so hard but being together makes the emotional aspect of it a bit easier … of course, the financial aspect is still tough with rent being twice what it was in Sequim, so please continue to share this campaign and donate if you’re willing/able. Thank you all for your support (financial and otherwise).

“Emerson is an amazing and strong boy (case in point: he’s been handling the feeding tube like a champ since he got it a few weeks back). And, he comes from a great family, too. They are all so grateful to have y’all rooting for them, as am I. Thanks again!”

The Akes have a strong support system for matters of daily life. Vogel flew in from South Korea to help at the beginning, and this month Jaime’s mother, sister and brother-in-law have moved from Texas.

Rhythm of life

Jaime has established a rhythm of life at the new house, which according to Vogel is a “gorgeous property” with room for everyone, including an office for Greg. Emerson has a big room on the main floor.

The family has settled into a routine of homeschooling, taking care of Emerson as he struggles with the side-effects of the treatment, chores and entertainment, baking, walking the dog (Allie) and maintaining a sense of normalcy as they enjoy the moments they share together.

Dubois wrote, “I have really enjoyed meeting Emerson and working with the Ake family. His parents are doing an amazing job managing all of the care at home and asking great questions about his treatment, side effects, and long term outcomes.

“Emerson has been so strong and resilient going through intensive chemotherapy. He is quiet but I’m getting to know his sense of humor and he has done such a good job with his family and all of the staff hovering over him… which is not what most 13 (almost 14 year old boys) are used to.”

Dubois added, “Children are extremely resilient and the bonds between family members become even stronger after having to endure the ups and downs of treatment.”

Meanwhile, Sequim beckons.

“My heart says Sequim is our forever home, it just may take a few years to be able to go back safely,” Jaime wrote. “Emerson isn’t considered cured until he has been cancer-free for five years, which won’t be until he is almost 19.

“That said, we talk everyday about getting back to Sequim, we still look at real estate listings and we’re going to try to move back the absolute earliest we can.

“I can’t really put into words why I love Sequim as much as I do, all I know is that my soul feels like ‘yes. Here. This is where you’re supposed to be.’

“I’ve never felt that anywhere else we’ve ever lived or been stationed and I didn’t even feel that in the place where I grew up — so, I don’t take that feeling for granted. I’ve learned to listen to my intuition, and I know Sequim will always be home for our family.”

GoFundMe for for Emerson Ake, family

Family and friends are seeking to raise funds for the Ake family of Sequim. Emerson Ake, 13, was diagnosed with B cell lymphoblastic leukemia. Visit gofundme.com/f/keeping-the-ake-family-together-under-one-roof.

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