When we think of childhood cancer and in particular childhood brain cancer, we never envisage it happening to our healthiest & brightest. I used to worry about things for my children like stranger danger, motor vehicle accidents, drugs, alcohol and poor peer relationships. Brain cancer was not even on the agenda! How easily we can be side-swiped!
Claire was an active and incredibly gifted sportswoman. Four months before diagnosis Claire participated in her school cross country 3.5km and came second. In all the cross country runs for her age group during her years in primary school, Claire has come in the top three. Claire was also an exceptional tennis player. She started playing at four years old and loves the sport!
Claire was diagnosed with a large right sided tumour in the cerebellum on 2nd September 2013 following deteriorating tennis ability and inability to serve. She had noticeable high stepping gait when she ran and depth perception difficulties. It took her father some effort to convince the medical specialists that something was wrong with his daughter. But four hours and three consultants later, he had convinced them! Parents know their children best! An emergency MRI was scheduled and all our fears were realised.
Initially, we were advised that the tumour appeared to be inoperable, due to its size (occupying 3/4 of the right side of her cerebellum) and possible infiltration of the brain stem. We were transferred to the RCH.
Once at the RCH, the oncologist wasn't convinced that it infiltrated the brain stem and ordered a biopsy. The biopsy the next week revealed that the tumour was operable. 18 days after diagnosis, debulking of tumour was undertaken on the diagnosis of medulloblastoma and the doctors were talking cure. Not all of the tumour could be removed; a 2cm margin remained, that we were assured would respond to radiation and chemotherapy! Claire was discharged from hospital one week after the extensive neurosurgical procedure.
On our son's birthday, 1st October 2013, we had a scheduled appointment with her oncologist where we were advised that there had been some odd staining on some slides and that Claire's pathology had been sent to Memphis for further analysis. The results indicated that Claire had a glioblastoma, which is the most aggressive form of brain cancer.
"We were devastated; from initially being told 'it is potentially curable’, to now being told she has a less than 2% chance of survival..."
Claire commenced a 6 week course of radiation with simultaneous chemotherapy, which finished on the 2nd December 2013. Our daughter truly is remarkable! During this time she returned to playing tennis, performed in her end of year dance concert, performed a solo in her school choral evening, ran a cake stall at a fundraising day and has attended school in between hospital appointments! Always with a smile on her face! At one point, the radiology staff assured us that they were turning the machine on!
On the 30th December 2013, Claire had her first MRI post radiation. The initial results indicated that there is no visible solid tumour remaining. There is some radiological different tissue, however they can't tell what it is. We have been advised that the tumour is likely to come back.
This has been an utterly devastating time for our family, however, Claire is convinced she will get better & always is positive & strong!
Sadly, Claire died on Friday 11th April 2014.