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Pediatric patients featured in NIH Children’s Inn 2017 Annual Report

Feb 14, 2018

Lucy was diagnosed with Hyper IgE syndrome or Job’s syndrome – a rare genetic illness that puts her at risk for developing serious lung and skin infections. Avery has a rare NFKB1 gene mutation that compromises her immune system. For both patients, clinical trials at the Center for Cancer Research provided life-saving bone marrow transplants to address infections caused by immune deficiencies. Lucy and Avery stay at The Children’s Inn when they come to NIH for treatment. Read Lucy’s story (page 3) and Avery’s story (page 5) in the Children’s Inn Annual Report…

Pediatric patients featured in NIH Children’s Inn 2017 Annual Report
Jesus Garces-Soto

Finding relief in the aftermath of Hurricane Maria: A patient’s journey from Puerto Rico to the National Institutes of Health

Dec 18, 2017

Jesus Garces-Soto and his wife, Lyssette Santiago, never expected to travel from Puerto Rico to the National Institutes of Health (NIH) in Bethesda, Maryland. On the same day that Hurricane Maria, a storm with 150-mile-per-hour winds, made direct landfall on Puerto Rico in 2017, Garces-Soto needed to seek treatment for an infection related to bladder cancer. Destruction from the hurricane took out the hospital’s electricity, and with no generator, it was difficult to provide adequate care. With help from members of the American Cancer Society and the National Cancer Institute, Garces-Soto and Santiago were flown to NIH where Garces-Soto is receiving care from Andrea Apolo, M.D., Investigator and Lasker Clinical Research Scholar in the Genitourinary Malignancies Branch. Read more...

Michael Becker

Walking with purpose after an HPV-related head and neck cancer diagnosis

Dec 6, 2017

In November 2015, Michael Becker was diagnosed with Stage IV head and neck cancer caused by a strain of the human papillomavirus, or HPV. He now advocates for education and awareness of the HPV vaccine as cancer prevention for both boys and girls. “I want to make people aware that you can avoid my situation by getting the shot.” Read more…

Yolland Jackson

Fearless in the face of small cell lung cancer

Nov 21, 2017

Yolland Jackson considers herself a soldier who is determined to fight her small cell lung cancer until the bitter end. In discussing her decision to enroll in a phase II clinical trial led by Investigator Anish Thomas, M.B.B.S., M.D., in the Developmental Therapeutics Branch, she shared some of her reasoning with him. “This is bigger than me. This is happening to me because someone is going to come after me that will need this treatment. Whatever you need to do, I’m in.” Read more…

Nesma Aly

A fantastic camp experience for kids with unique health conditions

Aug 18, 2017

Believe it or not, camp was a favorite part of summer for Nesma Aly from 2008 to 2016. When Nesma was nine months old she was diagnosed with osteopetrosis, a rare congenital disorder in which bones become prone to break easily due to an imbalance in bone formation and breakdown. Camp Fantastic is distinctive in that it provides a normal camping experience for a unique group: children between the ages of 7 and 19 who are undergoing cancer treatment presently or in the last three years, or a bone marrow transplant in the last five years. The 2017 Camp Fantastic session runs August 13-19.  Read more...

Center for Cancer Research hosts 10th Annual GIST Clinic

Jul 14, 2017

Patients and specialists from around the world gathered for the 10th Annual Pediatric and Wildtype GIST Clinic, which took place Wednesday, July 5 through Friday, July 7, 2017 at the NIH Clinical Center in Bethesda, Maryland. Occurring once a year, the clinic convenes clinicians, research scientists and advocates from across the country to consult with patients who have GIST. Christine Gonzales, a GIST clinic patient from New Mexico, says, “It’s been super amazing because I’ve never talked to a specialist about this cancer."

Using the immune system to fight, and win, the battle against cervical cancer

Jun 6, 2017

Aricca Wallace and Christian Hinrichs, M.D., catch up like old friends each time she comes to the National Institutes of Health Clinical Center for follow-up appointments. She updates him on her two boys’ wrestling competitions and state titles. He shows her pictures of the new puppy that is terrorizing his house. So far, they’ve finished each visit with Dr. Hinrichs telling her she is still cancer-free, something she never thought she would hear following her diagnosis with metastatic cervical cancer.  Read more...

Not slowing down

May 19, 2017

Nine and-a-half-year-old Travis Carpenter gets a lot of speeding tickets. (He stresses that “and-a-half” part, too). These speeding tickets don’t come from a law enforcement officer but Jesse, one of his nurses at the NIH Clinical Center. Travis uses a power chair that he’s adorned with racing stickers, and his speeding tickets come from him zooming down the Clinical Center’s hallways, dodging the steady traffic of doctors, nurses, patients and families. He loves all things racing, NASCAR and pit crews. Neurofibromatosis type 1 isn’t slowing him down. Read more...

Kristy and her daugher Jane

A Conversation with Kristy and Jane

May 17, 2017

Jane has been coming to the NIH Clinical Center for treatment for neurofibromatosis type 1 (NF1) since she was three years old. She is currently enrolled in a trial that tests Selumetinib, a MEK inhibitor, and her tumor is now 30.7 percent smaller than when she first started this trial three years ago. Her diagnosis has changed the lives of her family but has also given them new passions and perseverance. Read more...

“They gave me my life back”

Mar 30, 2017

Collaboration between the CCR and NIAID helped a teenager eat a cheeseburger again. Learn more...