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Patients in the Spotlight

Teenage Girl Shows Courage & Grace with Cancer Treatment

Golisano Children’s Hospital is fortunate to work with incredible families who, despite being faced with great adversity, take time to recognize and appreciate the value of quality medical care. Read what Lori Luther had to say about the care her daughter Michaela received at Golisano Children’s Hospital.

Michaela DeegMichaela was diagnosed with Hodgkin’s Lymphoma on April 6, 2011, after five months of visits to a dermatologist for severe itching/rash on her legs.

Michaela had met with her primary care physician, Dr. Howard Foye, on March 17, for a bump above her clavicle. Dr. Foye had ordered blood work that same day, but it had revealed nothing. An ultrasound and biopsy with Dr. David Berns, of Borg Imaging, the following week revealed 22 masses, but the biopsies were negative. Dr. Foye recommended we meet with Dr. Jeffrey Andolina, pediatric oncologist at Golisano Children’s Hospital at the University of Rochester Medical Center (URMC), for a CT scan.

On April 6, Dr. Andolina examined Michaela and told us he was very concerned, the tumors looked like Hodgkin’s Lymphoma, and ordered a CT scan for the same day. Dr. Andolina couldn’t have been more compassionate. He explained to Michaela what Hodgkin’s was, the typical protocols, and what she could expect over the next few months.

When Dr. Andolina left the examining room, Michaela turned to me and said, “Mom, if I’m going to lose all my hair I want to get an undercut, when would I ever have an opportunity like this to shave part of my head?” And so began Michaela’s bravery throughout her whole journey. Michaela had done some modeling and had long blond hair half way down her back, the “undercut” hair style is where one side of your head is shaved and the other stays long – she rocked the style and incredible poise. Throughout the next four months I had nearly every nurse and doctor ask me on the side, “Is she normally like this?” I said, “Yes, she’s an amazing young woman.”

On April 14, Michaela had a PET (positron emission tomography) scan. A PET scan gives health care providers more precise information about how much the tumors have affected the function of the tissue and organs, to help them decide on the best course of treatment. , She also had a bone marrow biopsy on both sides, and insertion of her PICC line. Michaela had to have a PICC line, a long, slender tube that fed to a vein in her arm, instead of a portal, an opening in one of the organs that main blood vessels pass through, because the masses were so large and close to her heart and lungs they felt it wasn’t safe. The procedure was very painful, but Michaela’s team was outstanding and Michaela was so brave! Cheri Gillette, a nurse on the PICC team, headed up the procedures and had such a fantastic personality, making Michaela at ease while Mary Tyson, the child life specialist, distracted her with find the hidden picture books

April 21 was the first day of chemotherapy, and July 8 was her last. During those months, Michaela had four rounds of chemotherapy, which included 16 visits to clinic for treatment, two separate blood transfusions, and a trip to the emergency room with a 48-hour stay due to a fever and her blood counts being off, three CT scans, two PET scans, weekly blood draws, a drug store full of drugs to be taken daily including 25 injections given at home. One She had terrible pain which began in her legs then spread throughout her body. Vicodin sometimes didn’t even help, but she refused morphine. Michaela also had home health nurse visit once a week to examine her and take blood draws. We were hoping Michaela would not need subsequent radiation treatment due to the potential negative long-term effects on her health and higher probability of developing additional cancers later in life, but that was not to be.

Michaela was crushed – we all were – when she met with Dr. Louis Constine, professor of radiation oncology at URMC, who informed her there was still a large mass around her heart and lungs that they didn’t want to take the chance cancer cells were hiding in there. It was the first time Michaela said something negative after talking with the doctors and nurses. As soon as he left the exam room to schedule the radiation treatments Michaela said, “Well that sucks.”

Michaela underwent radiation treatment every day for two weeks. I wasn’t allowed in the room like I was for all of her other scans and treatments and she was really scared the first few times. Once again, she emerged as a fighter.

Michaela’s primary nurse and favorite is Margaret Hussong, in pediatric oncology at Golisano Children’s Hospital. She always had a way of giving Michaela the facts without sugar coating them, but at the same time reassuring her. She turned an overwhelming situation into something manageable. One day Michaela went into clinic for a non-scheduled appointment because of the pain she was in and cried for the first time in front of anyone (except me). Michaela’s tears were barely down to her cheek when Margaret shot up out of her seat and hugged Michaela for a long time. It was a moment she will never forget.

It was a very difficult journey for Michaela. She turned 16 during her treatment and was too sick to have a Sweet 16 birthday party but was determined to have a few friends over. The very second her last friend left the house, Michaela began to cry because she felt so sick, she had kept it all in resolute to be “normal.” It was also the end of the school year and Michaela was taking three AP courses. Her brother brought school work home for her and she completed her assignments and exams feeling absolutely horrible. She lost her hair and wanted nothing to do with wigs, bandanas, or hats; she was content and self-assured with her looks. She has a great group of friends who did a fundraiser “M&M’s for Michaela” in which they raised over $500 for CURE Childhood Cancer Association, but as time went by they no longer called or got together with her. They are just starting to reconnect with her now.

Every time Michaela went into clinic, the staff, from Shalonda McKinnon at check-in through her team of nurses, all made her feel so special, treating her with insurmountable care and compassion. Michaela especially liked the warmed blankets she was given every time she went into clinic for her chemotherapy treatments. We cannot say enough positive things about Dr. Jeffrey Andolina and Margaret Hussong, who made themselves available to us, literally, 24/7. They were invaluable to Michaela and our family during this very difficult journey.

Sincerely,

Lori Luther

Click here t o learn more about Golisano Children's Hospital's Pediatric Hematology/Oncology Division.