Kira was a very conscientious child, always concerned with everyone else before herself. Kira was kind to a fault, and loved being a little kid – she embraced childhood. She excelled at softball, and especially loved playing catcher.

On Saturday, May 11, 2013 Kira was practicing with her team and sisters when she left the plate and came over to her father and said, “I can’t play. I have a really bad pain in my head and there are two of everyone”.

Kira’s mum immediately whisked her to the emergency room where she suspected a brain tumour. Because the tumour was circular in shape with a thick border, they considered it could possibly be an “infection” of some sort. A biopsy surgery was recommended in order to evaluate the tissue. This frightening surgery was performed the next morning revealing cancer, more specifically, Diffuse Intrinsic Pontine Glioma (DIPG).
Their world was forever rocked. It was May 14th, 2013.

After searching every possibility to try and save their daughter’s life they came across the pioneering work of Professor Gill and his team at the Frenchay Hospital in Bristol. Following an evaluation of Kira’s condition Professor Gill agreed to treat Kira with this experimental treatment on compassionate grounds. Kira and her family traveled to the UK where Professor Steven Gill and his team (including Richard Edwards, Consultant Pediatric Neurosurgeon; Neil Barua, Fellow Researcher in Experimental Neurosurgery; David Cronin, Clinical Research Fellow; and Rupert Harris, Anesthesiologist) began what would become a 15 hour surgery.

The first surgery of the day would involve a craniotomy, where the back of Kira’s skull was removed and the cerebellum manipulated to reveal the tumor in the pons*. Because the centre of the tumour was necrotic**, the surgeon aspirated*** the center of the tumor in the pons. It collapsed like a balloon, and went from 41mm across to 15mm across, creating space and relieving pressure.
The next part of her surgery would be to insert guide tubes and catheters through the brain matter and down into and around the tumour, guided by a robot, which allows the surgeon to insert the tubes without hitting blood vessels.

The catheters had small ports at the top of Kira’s head which were attached to a machine that infused carboplatin (chemo) in and around the tumour (the parts that were still active), very slowly, for a period of three days while Kira was awake. Another surgery removed the catheters but allowed the guide tubes to remain, for future infusions if needed. Kira recovered at the hospital for a week and then rehabilitated with mum, for another 2 weeks, before returning home to America. Because there would be no chemo in Kira’s system (it was all contained in her brain), she returned to school with no neurological damage, and no nasty chemo side effects. The doctors in Chicago kept watch on Kira while she and her family were at home, and her team in England monitored her progress across the pond. The Spedales would return to England for draining the old drug and infusing more from an Ommaya reservoir**** behind her ear three more times.

Tragically Kira passed away in October 2014, just 6 weeks before her 12th birthday. Kira was a very special little girl and has played a huge part, along with a number of other children, in advancing the research to find a cure for this horrendous condition. To hear Kira’s story in full click here.

Following Kira’s treatment the system progressed to include a port that is embedded into the side of the skull so that surgery is not required to allow repeated infusions of chemotherapy.

* pons – part of the brainstem
** necrotic – dead
*** aspirated – drawn in or out using a sucking motion
**** Ommaya reservoir – a catheter system used for the delivery of drugs into the cerebrospinal fluid (colourless bodily fluid found in the brain and spine)