11th Sept 2013: Kerry & her husband Mark were told that Mark had 2 malignant brain tumors.
Mark & Kerry lived every day for the next nine months to it’s absolute fullest & always looking for what would keep Mark alive & living a brilliant life. Sadly Mark was taken by brain cancer on 25th June 2014. What they looked for most of all was to be able to talk to someone who knew what this journey was about but they weren’t able to find a survivor.
Mark had a natural gift of helping anyone he could; he was the guy that literally gave the shirt off his back to a stranger. Through his journey of rehabilitation after a near fatal motor vehicle collision in 2011 & then his brain tumor journey Mark made his promise to help anyone he met, even if it was a simple chat that added a moment of brilliance to another’s day.
Kerry is keeping Mark’s promise through her dedication to support those touched by brain tumors & work toward helping find a way of stopping brain tumors.
Mark was a patient at the PA Hospital Intensive Care Unit in an induced coma for 21 days after a near fatal high speed car collision in April 2011. He wasn’t expected to live due to the injuries he sustained in the smash, Kerry was by his side all but a few hours each day & some days she did not leave his side. Mark was brought out of the coma after 21 days & began rehabilitation, 1st was learning to write, 2nd was to breathe on his own without the machine, 3rd was to talk & finally was to walk. He managed all of these tasks but living in a hospital for so long & in different wards & hospitals Mark & Kerry were witness to so many people suffering in so many ways. What stood out most to them was how many people were dealing with their situation alone & with little support from family & friends.
It was then that Mark & Kerry started to offer help wherever they were able, loaning equipment, chatting & offering encouragement. Once Mark was able to return home they continued his rehabilitation & fumbled through the legal jargon, workers compensation & simply managing. They felt grateful that they were in a position to allow them to manage & be together. They knew families going through similar experiences that had young children & very little income.
A new journey
Mark continued to suffer with PTSD & for this reason they moved to 5 acres in Montville to live a quieter life & to build a respite center for people needing to get away from the hospitals & in need of recharging the batteries. Sadly 6 weeks after moving to Montville Mark was diagnosed with 2 malignant brain tumours.
And it began again but this journey was different. The last journey was working toward improvement & getting better, this one was to stay alive as long as possible & as well as possible.
So many times Mark & Kerry asked the Doctors to treat Mark to live, not to die.
From the first meeting with surgeons, oncologists, palliative care physicians it was obvious that Mark was dying quickly. Mark & Kerry were handed armfuls of brochures & reading material but no one was able to sit with them & tell them what to truly expect. They asked to speak with someone who had been through this & was willing to talk with Mark in particular but no one could be found. They knew Mark wasn’t the first person to have a brain tumour; Kerry’s cousin had died from a brain tumour 10 years before. Not being able to talk with anyone was shattering to Mark’s emotional state giving him little hope of survival. Mark fought to live, he requested to be put on trials, he endured full brain radiation, chemotherapy, alternative therapy, strict diet regime and everything he could do to stay alive he did it. But the medical people only suggested he visit places & do things he wished to do & do it NOW. So many times Mark & Kerry asked the Doctors to treat Mark to live, not to die. One neurosurgeon told Mark & Kerry that they simply did not know enough about the brain & why these tumours occur; she stated that not enough research is being done.
A lonely disease
To be diagnosed with a malignant brain tumour is possibly the scariest thing a person can hear, secondary to being told your young child has a malignant brain tumour. It is a lonely disease, one that takes your voice away, your logical thinking, your ability to think of anything else, seemingly feeling hopeless yet hope it seems is all you have.
Mark had surgery to remove the 2 tumours so again spent a lot of time in hospital. Every brain tumour is different & every patient comes out of neurosurgery different. Mark was fortunate to not have any obvious deficits from his surgery. However others in the same ward were not so fortunate.
Mark lived for 9 months battling the brain tumours, which grew back, & more. Mark was a sensible man & with Kerry they organized their respective futures as best they could. They were together 24hrs a day, 7 days a week with only 4hrs a week help once a week. This was the only respite they could get so Kerry could leave the house to do whatever needed to be done outside the home. The problem was that they couldn’t find any help who had experience with people having brain tumours & the difficulties that are secondary conditions.
Thankfully Mark & Kerry had many lengthy discussions and it was this sentence from Mark that Kerry will not forget.
Will you please help the poor beggars with this killer in their head? Somebody has to so can you please do your best?”
And with that Kerry declared she would do her best to see that no-one touched by brain tumours will walk alone.
Kerry didn’t know how or where to start she only knew she had to. Her first charity was Ronald McDonald House, and then a young boy from the Sunshine Coast suffering with cerebral palsy & having had a stroke needed a more reliable car to get to appointments & treatment so she organized that. And then in mid 2015 at a charity lunch Kerry met Jane Meredith of Secrets-Shhh. With a short exchange of words they both knew that together they could make a positive contribution in brain tumour treatment. And that is how Beyond Brilliant Foundation was formed & is building to support those touched by brain tumours.
Kerry has no formal medical qualifications she only has real life experience. She watched & nursed her mother with bone cancer in 1997, she watched her cousin go through 11 brain surgeries to remove tumours & endure full brain radiation from 1993 -2004 & then her husband in 2013 – 2014, the thing that stood out was that not much has improved in 17 years for the patient’s experience. We’re getting on top of breast cancer, prostrate cancer & so many others now we need to get on top of brain cancer!! It is the number 1 killer of people under the age of 40.