“I don’t want her to see suffering anymore”

Michelle Arce and Aimee Gomez-Arce await news on Aimee's treatment at Seattle Children's.
Michelle Arce and Aimee Gomez-Arce await news on Aimee’s treatment at Seattle Children’s.

It was roughly 11 a.m. on March 31, 2013, when Aimee Gomez-Arce, 2, having suffered bouts of nausea, headaches and frequent vomiting for going on a couple of weeks, was rushed to Seattle Children’s Hospital. Aimee’s mother Michelle Arce, 19, knew there was something wrong about this “stomach flu” she’d been told was the culprit. Having reached two years old and still yet to say her first words, Aimee was now showing signs of trouble keeping her head straight as she walked, instead tilting it progressively more and more down and to the side as her condition worsened.

At 2 p.m. Aimee was admitted for examination and a magnetic resonance imaging (MRI) scan. Michelle, joined by Aimee’s Grandmother Gloria Arce, sat anxiously in the lobby awaiting results of the tests.

“I saw them gathering more and more doctors into a small little area and that’s when I knew something serious was going on,” said Michelle. “They came in, and there were at least eight of them coming in at once. They said ‘we don’t really have some good news to tell you’ and I thought ‘great’. That’s when they told us there was something in her brain that wasn’t supposed to be there. We asked ‘what do you mean?’, and they told us ‘we can’t tell you what it is, but it could be a tumor.’”

The doctors also explained Aimee’s brain had also been collecting fluids leading to excess pressure, which was causing her to tilt her head, and that it required immediate same-day surgery. It took doctors about four hours to drain the fluids. Following the procedure, Aimee was sedated and allowed to rest for the night.

The following day, April 1, Aimee underwent another surgery, this time to remove the mass discovered in the MRI scan.

“[The second surgery] was seven hours long…and we just didn’t know what was going on. [Every] hour or so one of the nurses would come out and say ‘oh she’s doing good’ and ‘she’s getting through it.’”

Doctors were only successful in removing 75-90% of the tumor. After the procedure, doctors approached Michelle with Aimee’s diagnosis.

“They told us during the surgery, they took out a part of the tumor for examining to see what kind of tumor it was,” said Michelle. “And during the tests, they determined it was an atypical teratoid rhabdoid tumor, or ATRT.”

ATRT is rare form of brain tumor, almost exclusive to young children. In the United States, only three in every one million children are diagnosed ATRT per year. The cancer occurs in the central nervous system and often, and as it is in Aimee’s case, appears in the cerebellum, a region of the brain critical to controlling motor functions.

“ATRT is a high-grade malignant pediatric brain tumor that…requires more aggressive therapy than some other types of brain tumors in children,” said Dr. Sarah Leary, Aimee’s attending physician. “Treatment includes initial surgery to make the diagnosis and relieve pressure, followed by chemotherapy, a “second look” surgery to remove any remaining bulk of tumor if possible, radiation therapy, and additional high-dose chemotherapy with hematopoietic stem cell rescue.”

“Data is preliminary on this newer aggressive combination of treatments, but it is looking much better than in the past.  It appears that we are now curing more than half of children diagnosed with ATRT,” said Leary.

In the night, April 22, Aimee began her first cycle of chemotherapy. Administered through a double-lumen Hickman line, Aimee received a cocktail including seven separate medications. Aimee’s sessions lasted anywhere from one to six hours depending on the medication being administered. Some sessions she was lucky enough to only need done weekly. Others though she had to endure the pain and discomfort of on a daily basis.

Over the following several weeks, Aimee would complete not one, but two cycles of chemotherapy of this nature. Michelle, a full-time student at Bellevue College and who works as a front desk attendant for Multicultural Services at the college, had been pursuing a transfer degree in forensic nursing when Aimee was diagnosed. However, Michelle was forced to drop her classes when Aimee began treatment.

On June 4, Aimee underwent another MRI to determine the effectiveness of the chemotherapy she’d completed up until this point. The news was not what had been hoped for.

“Through the MRI they saw that the chemotherapy wasn’t working how it was supposed to be working,” said Michelle. “They want to do another surgery because they know the cancer is going to grow and they know it just needs to come off…[but] there’s a lot of risks.” Without this surgery, Aimee’s cancer will grow and can cause further damage.

Michelle says that some of the issues that weigh on her mind are the idea of Aimee “not able to breathe on her own, not being able to eat anymore, and being paralyzed.”

“I don’t want her to see suffering anymore,” said Michelle. “She doesn’t want to be there, she doesn’t want to be tortured anymore. She’ll hide from the doctors. She’ll grab her blankets and hide from them because she doesn’t want them to touch her anymore.”

“It’s been really hard…she points at the door [and] she just wants to get out,” said Michelle.

But Aimee’s fight is far from an end. Aimee is due be transferred to Children’s Hospital of Philadelphia where she will begin radiation treatment. Michelle, accompanied by her mother Gloria, will be housed at the Ronald McDonald House. They will need to live there for a minimum of two months while Aimee undergoes treatment.

The government has helped cover some of the costs of treatment and hospital stay. However as Michelle’s father Carlos Arce, a janitorial maintenance services provider, is the sole provider for Michelle, Aimee, his wife Gloria and Michelle’s younger brother Carlos Jr., 11, the financial burden on Aimee’s family is still great.

In order to help alleviate some of the pressure, BC students involved with the Random Act of Kindness club organized a fundraiser May 14-15. Partnered with the Bellevue College Foundation, they raised $1,403.88. The money was given to Michelle through the Foundation’s Student Resources Network Fund, which exists to help students faced with emergency situations.

BC Alumni Laura Hidalgo and Alex Sanchez have been working with members of Student Programs to organize “Car Wash for Aimee”. The carwash will be Saturday June 22, 9 a.m. – 5 p.m. at Discount Tires in the Renton Highlands, 3123 NE 4th St. Renton, WA 98056. All proceeds go directly to Aimee and her family.

If you are interested in donating to help Aimee’s cause, visit www.actofkindnessforaimee.wordpress.com or contact Leslie Mayo at LeslitaM@bellevuecollege.edu

 

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