Saving Grace: A Coast Guard family’s battle against AT/RT

Jennifer Skuches, the mother of Grace, plays with her daughter while at the Columbia University Medical Center in New York, Aug. 26, 2015. The Skuches make at least three trips to the hospital each week for routine check ups, blood draws and transfusions and could continue this until Grace is well past 20 years old. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

Jennifer Skuches, the mother of Grace, plays with her daughter while at the Columbia University Medical Center in New York, Aug. 26, 2015. The Skuches make at least three trips to the hospital each week for routine check ups, blood draws and transfusions and could continue this until Grace is well past 20 years old. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

 

Written by Petty Officer 3rd Class Ali Flockerzi

 

Taken from Jennifer Skuches’ blog on June 15, 2015:

Our pediatrician advised us to see a pediatric neurologist to “ease our mind” of Grace’s tremors. We really thought nothing of them. Later in the evening, we were told our beautiful 5-and-a-half month-old daughter, Grace, had a golf ball-sized tumor sitting near her brain stem.

The elevator doors open on the seventh floor of the Herbert Irving Pavillion, located at the Columbia University Medical Center in New York. The floor is a brightly painted canvas; turtles swim in a flowing stream of water next to fish and worms. Frogs leap across riverbanks and butterflies hover near flowers. The river winds up a path, branching off in different directions, leading to waiting rooms, nurses stations and curtained off areas for families to sit with their sick children.

The bright colors are meant to promote a happy, cheerful environment and bring some light into the dark world of pediatric cancer. But a thick air of sadness hangs overhead. A little boy struggles through another round of chemotherapy. Families anxiously wait for test results. An infant endures another blood transfusion. A single trip to the hospital can leave a family waiting anywhere between two and 10 hours for something as simple as a platelet transfusion.

Jennifer Skuches claims a chair near a large window that overlooks the Hudson River. She is holding her 8-month-old daughter, swaying side to side and keeping her calm while they wait for results from baby Grace’s blood tests. Grace clings to her mother and the corners of her lips pull into a sweet smile as a nurse approaches, speaking to her in a high-pitched voice. Every day is a struggle for Grace, but she manages to sport a positive attitude even under the worst circumstances.

Jennifer and Ken Skuches hold their eight-month-old daughter, Grace, at their home Aug. 30, 2015. At five months, Grace was diagnosed with an Atypical Teratoid/Rhabdoid Tumor, and has had four brain surgeries to date. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

Jennifer and Ken Skuches hold their eight-month-old daughter, Grace, at their home Aug. 30, 2015. At five months, Grace was diagnosed with an Atypical Teratoid/Rhabdoid Tumor, and has had four brain surgeries to date. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

After finding out about the tumor on Grace’s brain, surgery was immediately scheduled for the following day at St. Joseph’s Children’s Hospital in Paterson, New Jersey. Diagnosing the type of tumor Grace had was the best step toward understanding how to fight it.

Taken from Jennifer Skuches’ blog on July 2, 2015:

After waiting and waiting, Dr. Garvin finally met us. Our worst nightmare…AT/RT. After reading journals, the prognosis for AT/RT is grim, (but) we were going into this battle with the best possible situation. Grace has no other tumors or lesions, the Cerebral Spinal Fluid was negative for cancer cells, the tumor was fully resected and she had stem cells available for harvest.

AT/RT, or an Atypical Teratoid/Rhabdoid Tumor, is extremely rare and spreads rapidly. About three of every one million kids will get this type of cancer.

“The first moment you find out, you almost gasp for air. You just don’t know how to react,” said Ken Skuches, Grace’s father. “Luckily, the tumor was in an area that they could remove it.”

The surgery on the tumor lasted approximately five hours and the doctor was able to cut out about 99 percent of it. To date, Grace has had four brain surgeries but the possibility exists that she will have another performed in the future. Ken described the disease as incredibly aggressive, so the treatment needs to be equally aggressive.

Grace Skuches plays in her mother's lap while waiting for her blood to be drawn at the Columbia University Medical Center in New York, Aug. 26, 2015. At five months old, Grace was diagnosed with an Atypical Teratoid/Rhabdoid Tumor and has had four brain surgeries to date. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

Grace Skuches plays in her mother’s lap while waiting for her blood to be drawn at the Columbia University Medical Center in New York, Aug. 26, 2015. At five months old, Grace was diagnosed with an Atypical Teratoid/Rhabdoid Tumor and has had four brain surgeries to date. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

The chemotherapy protocol she’s currently under lasts about six months. As the next three treatments progress, she’ll be given higher and higher doses, Ken said. Seeing the words DANGER: POISON printed all over the chemotherapy bags for the first time was alarming for the couple. The nurses put on special safety suits and the Skuches’ were not allowed to touch Grace without gloves on. Some of the doses Grace will receive in the future will be so toxic it could burn her skin if she isn’t bathed every eight hours.

“They give her enough poison to bring her to the edge of death and then she’s expected to pull herself back,” said Ken. “When you think about what you’re putting into your daughter, it’s incredibly scary.”

Even when the chemotherapy sessions are complete, trips to and from the hospital will likely continue until Grace is 20 years old or maybe longer. This type of brain tumor is relatively new, only having been discovered about 15-20 years ago. The doctors will continue to take magnetic resonance image’s (MRI) of Grace’s brain to help with research and fighting AT/RT.

The Skuches make at least three trips to the hospital each week for routine check ups, blood draws and transfusions. All the medical care Grace requires has already surpassed over a million dollars and the Skuches’ are responsible to pay at least $10,000 a year out of pocket. This doesn’t include transportation to and from the hospital, parking or tolls.

“I could not imagine going through something like this without insurance and the help of the many different cancer organizations,” said Ken.

To help supplement income and pay for the costs that aren’t covered by the couple’s insurance, they were urged to set up a fundraising page in Grace’s honor. Through this site, friends, family and coworkers have donated money to the family and are able to read about Grace’s journey through a blog Jennifer and Ken maintain.

Civilian coworkers with the Coast Guard and Jennifer’s coworkers at the Department of Justice have donated leave to Jennifer so she can continue taking care of Grace during her treatments.

“Working for the Coast Guard is like having another family. The coworkers have been unbelievably supportive and helpful. A lot of leave that my wife has donated to her has come from my fellow Coast Guard workers. They’ve supported us in numerous ways,” said Ken, who works as the Chief of the Regional Examination Center in New York.

Grace Skuches is held by her mother while they wait at the Columbia University Medical Center in New York, Aug. 24, 2015. At five months old, Grace was diagnosed with an Atypical Teratoid/Rhabdoid Tumor, and has had four brain surgeries to date. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

Grace Skuches is held by her mother while they wait at the Columbia University Medical Center in New York, Aug. 24, 2015. At five months old, Grace was diagnosed with an Atypical Teratoid/Rhabdoid Tumor, and has had four brain surgeries to date. U.S. Coast Guard photo by Petty Officer 3rd Class Ali Flockerzi.

The financial, emotional and physical strain is real and always present, but the Skuches’ have never given up hope, crediting their faith and help from family and friends as the family’s source of strength.

“You spend a lot of time crying and we spent a lot of time praying because so much is out of your control,” said Ken. “It’s very comforting to know that God is watching over us and Grace.”

Read here for updates on Grace’s blog.

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