Chordoma Resources
A variety of resources is available to those who have been diagnosed with chordoma and their families.








Click here for a list of chordoma resources.
 

 

 
         

Natalie's Story


Natalie is an 11 year old girl who lives in Cape Town South, Africa. She enjoys reading, swimming, hiking, arts, and animals.

In January of 2011 she woke up one night with chest pain and difficulty breathing. Her parents brought her to the Christiaan Barnard Memorial Hospital in Cape Town. After a day of imaging studies a large mass was found in Natalie’s chest that was compressing her airway. The next day surgeons in Cape Town performed urgent surgery to relieve pressure on her airway. The pathologist’s diagnosis was chordoma

Natalie’s tumor involved over ½ of her thoracic spine.The expertise necessary to treat such a large chordoma was not available in South Africa so Natalie’s parents began researching chordoma and its treatment. They contacted The Stephan L. Harris Center for Chordoma Care. After a conference call with the physicians at the Harris Chordoma Center Natalie’s parents made the decision to travel 7700 miles to Boston.

On 3/21/11 Natalie and her parents met with the team of doctors and nurses at the Harris Chordoma Center. The team was led by Dr Francis Hornicek, Director of the Harris Chordoma Center and Chief of Orthopaedic Oncology at MGH

In April of 2011 Natalie began preoperative proton beam therapy at the direction of Dr Yen Lin Chen a radiation oncologist at the Harris Chordoma Center.  If a few chordoma cells are left after removal of the tumor the tumor will return. The preoperative radiation is designed to prevent this. While receiving her radiation therapy Natalie had the chance to build her first snowman.

On April 18 of 2011a team of 5 surgeons performed Natalie’s first surgical procedure. This goal of this 12 hour operation was to stabilize her spine with rods and screws along with preparing for the removal of the tumor at a later date.

Two days later in a 15 hour operation the team removed the tumor along with more than ½ of Natalie’s thoracic spine (T1-T7).  After removal of the tumor they reconstructed her spine using a custom made cylindrical titanium cage. The surgeons also removed a piece of bone from Natalie’s leg (Fibula) with the blood vessels that supply it and used it to rebuild her thoracic spine.  The blood vessels supplying the bone were connected to her vertebral artery giving Natalie living bone to replace what needed to be removed.

After such large operations Natalie faced a long recovery period. Her 11th birthday took place in the Pediatric Intensive Care Unit.  After discharge from Mass General she began rehabilitation at Spaulding Rehabilitation Hospital

In June Natalie had recovered sufficiently to begin the first phase of her postoperative radiation treatment. This goal of this course of proton radiation was kill any tumor cells that may have remained after the resection.

Natalie overcame prolonged nausea and in August another milestone was reached when the halo, the device supporting Natalie’s head, was removed.  This allowed her to begin the second half of her postoperative radiation in September.

On October 6 2011 Natalie had her last visit with the team at the Stephan L. Harris Center for Chordoma Care. The staff at the center held a going away party for Natalie to celebrate the completion of her treatment at MGH.

On October 15 2011 Natalie and her mother left Boston and began the long trip back to Cape Town South Africa.

Natalie continues her rehabilitation at home with physical and occupational therapy. She has returned to school part time and has slowly returned to the activities she enjoyed before her diagnosis.

The team at the Harris Chordoma Center works with physicians in South Africa to assist in her recovery. Her progress in monitored by imaging sent over the internet to Boston and uploaded into MGH systems.

 

 

To read more about Natalie’s journey click here









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