Patient Stories

Treating Crystal – who was 3 years old at the time – posed two significant challenges for her CHAM physicians. First, they needed to remove the tumor before she lost her leg. Second, because she was still growing, doctors needed to not only replace the bone she would lose in surgery but do it in a way that would allow her leg to be lengthened proportionately over time. To address the sarcoma, CHAM oncologists and surgeons placed the child on a course of chemotherapy both before and after surgery to shrink the tumor and prevent metastases. In Crystal’s case, she received a combination of five chemotherapies administered via a port in alternating cycles.

At the mid-way point in her therapy, Crystal underwent surgery to remove the tumor. The procedure was performed by CHAM’s David Geller, MD, Director, Sarcoma and Soft-Tissue Oncology Service, and one of only 150 orthopaedic surgeons nationwide specially trained in the field of pediatric oncology. Dr. Geller’s experience treating Ewing Sarcoma led him to partner with engineers at Stryker® – an orthopaedic device company – to build a prosthetic that was small enough to fill the void in Crystal’s tiny leg and could be lengthened incrementally.

The resulting expandable, femoral-replacing endoprosthesis had the capacity to “grow” up to three centimeters and could be extended easily with two small incisions and the twist of a screw. Today, Crystal is 6 years old and has experienced what her doctors call a “fairy tale” recovery. She sailed through chemotherapy, surgery and reconstruction and is enjoying a happy, active life with no signs of cancer recurrence. She is growing normally and her prosthesis has been lengthened on three separate occasions. Crystal’s physicians say that she will outgrow her current prosthesis and require a replacement in the near future.

Learn more about the Division of Hematology, Oncology and Marrow and Blood Cell Transplantation

Specialists at CHAM knew that Michael’s only chance at life was a liver transplant and he was immediately listed with the United Network for Organ Sharing. His doctors were still left with the challenge, however, of maintaining his health until a viable donor liver became available.

To help improve Michael’s chances, CHAM surgeons performed the Kasai procedure to bypass the clogged biliary tree and alleviate the strain on his liver by allowing bile to drain into the intestine. Unfortunately, the procedure – which has only a 50 percent success rate – didn’t work.

As an alternative, CHAM gastroenterologists sustained Michael by giving him small amounts of infant formula through a tube in his stomach.  

While Michael was undergoing his treatments, his father was being simultaneously tested to determine if he could serve as a living donor for his son, should a suitable donor liver not be found in time.

After eight months of waiting, the green light was given and Michael and his father were taken in to surgery. Michael’s diseased liver was replaced with a portion of the left lobe from his father’s liver which had been removed only minutes prior in the adjacent operating room. 

The case was a complete success and heralded CHAM’s entrée into pediatric living donor transplantation.
Just a few months following his surgery, Michael is a totally different child. He is eating well and gaining weight. While he does have some developmental delays due to his prolonged illness he is gaining ground quickly with the help of physical therapy.

Within six or seven weeks of the surgery, his father’s liver had regenerated and he was able to return to work full time.

Learn more about the Division of Gastroenterology and Nutrition

Simultaneously maintaining an active life style and stable glucose levels required that Mount check his blood sugars between 14 and 15 times a day.  It’s an exhaustive regimen that he continues to maintain, but one that has helped him live the life he desires.

Mount got his first glimpse of what life would be like without this daily practice in the spring of 2013 when he participated in a pioneering study being conducted by Rubina Heptulla, MD, Chief of Endocrinology at CHAM.

This NIH-funded study strives to define the role of two meal-related hormones in post-prandial glucose homeostasis in the closed-loop system (glucose monitoring and glucoseresponsive insulin management). Dr. Heptulla’s pioneering effort to develop this “artificial pancreas” offers the promise of automated mealtime glucose measurement and insulin delivery.

As a participant in the artificial pancreas study, Mount spent two separate nights at CHAM.  During these stays he was connected to an insulin pump and given a medication – in addition to his insulin -- to slow his digestive system and prevent post-meal highs. Over the next several hours, researchers checked his blood sugar levels regularly to ensure control and address any highs or lows. Mount’s blood sugars remained as good as any results he achieved through self-management.    

According to Dr. Heptulla, the hope is that this artificial pancreas will one day help to normalize patients’ lives by eliminating glucose checks and carbohydrate counting, reducing the incidence of hypoglycemia, and removing the need for manual administration of insulin.

Count Joe Mount as a believer. While he concedes that it will probably be a few years before the artificial pancreas will be ready for widespread use, Mount – who hopes to work in healthcare himself someday – says he is proud to have had a role in helping further this potentially life-changing research.  

Dr. Heptulla’s innovative research is just one example of CHAM’s commitment to developing new technology and treatments that will improve the outlook for children at all stages of life.

Learn more about the Division of Endocrinology and Diabetes at CHAM

When it became evident that the cancer wasn’t responding to conservative treatment approaches, Kareem’s doctors were left with only one option—surgically remove the tumor.

This type of invasive procedure is traditionally avoided in children due to the significant potential for disfigurement. Fortunately, CHAM’s neurosurgeons had successfully operated on two children with similar tumors and felt strongly that they could do the same for Kareem.

Armed with a well-defined plan based upon advanced visualization and mapping technology, and reconstructive techniques, a team of elite CHAM surgeons—representing otorhinolaryngology, neurosurgery and plastic surgery—operated on Kareem. The 14-hour procedure involved the removal of part of the child’s frontal skull base and the dissection of the invasive tumor from the optic nerve, sinuses and surrounding muscle. Using viable leg tissue from Kareem’s thigh, surgeons rebuilt his face to mirror his normal appearance and function.

Within a few months of his surgery, Kareem looked like himself, and the only evidence of surgery was a small scar on the left side of his nose.

This is the type of innovative, collaborative environment that exists among specialists at CHAM—helping CHAM neurosurgeons push medical boundaries and provide hope that such children can have normal and promising futures.

Learn more about the Division of Neurosurgery at CHAM