Kelsey's Story

Kelsey's Story

January 9, 2012

An update on Kelsey’s story was shared with us today from her mom, Lana.

Unfortunately on December 13, 2011, she lost her battle to a brain tumour.

In October I noticed changes in her, getting weaker and just not feeling well. Late October an MRI was completed and we were once again delivered devastating news, that the tumour was back. This time the tumour was within her brainstem and there was no further treatment available. I was a complete wreck, so full of sorrow and fear for Kelsey and she was her courageous self, as always. She would see me upset and hug me and try and comfort me and tell me that I didn’t have to cry, that she was going to be alright.

By November 15, 2011, as her condition worsened, doctors began informing us of decisions and preparations that were necessary for her eventual passing. This was just 2 days before her 13th birthday. Somehow we got the strength to try and carry on as if we always did, doing everything together and letting Kelsey be the centre of attention. Kelsey was always the centre of attention with her father and I and her older sisters Megan and Corrie. Kelsey was the baby of our family and we always watched over her and protected her. Any plans we made, always included her and revolved around her. She was special from the day that she was born.

On November 16, her sister Corrie was selected to participate in the Rick Hansen Relay. Corrie had applied to participate with her sister Kelsey as her inspiration since she was now wheelchair bound. We decided that this was an opportunity that we were all looking forward to and we wouldn’t miss.

There we were, in the middle of the street with Corrie wearing the medallion and pushing Kelsey right along with her. We were joined by dozens of friends and family. Kelsey’s schoolmates and teachers even played guitars and sang Kelsey’s favourite songs and happy birthday to Kelsey. It was remarkable! We celebrated Kelsey’s birthday that day and the next day, on her actual 13th birthday on November 17, 2011.

Kelsey became weaker and weaker and then passed away on December 13, 2011, but not without a fight right down to her last breath. It has been devastating for our entire family and community to have to lose Kelsey to such a horrible disease.

As I am reflecting on Kelsey’s entire journey battling the brain tumour, I don’t want her to be forgotten, I want her strong will and determination to fight this disease to inspire others to keep her fight going. Even while Kelsey was suffering through treatments and relapses, she still wanted to help other children and families so that they wouldn’t have to suffer through what she and our family endured. We need to find a cure and keep fighting until brain tumours are a thing of the past . . . we need to continue fighting for Kelsey’s sake.


October 2011

In September 2010, Kelsey started grade 7. On Monday, September 13, she began to suffer from headaches, nausea and blurred vision. After numerous trips to the family doctor and to the urgent care facility in Fort Erie, she was referred to a pediatrician at Welland General Hospital. On September 15, a CT scan was performed and a mass in her brain was discovered. She was immediately referred to McMaster Children’s Hospital in Hamilton.

That night Kelsey underwent an MRI and the next day was on the operating table to relieve pressure in her brain. A week later, a biopsy was performed and the mass was diagnosed as PNET (Primitive neuroectodermal tumour). Unfortunately, it was malignant and very aggressive and was located within her mid-brain and could not be completely removed by surgery. A de-bulking surgery was performed on October 15, 2010.

The surgery went very well, but the surgeons were only able to remove approximately 50% of the tumour. In addition, the surgery left Kelsey without feeling or movement and blurred vision on her left side, but saved her life. The next phase in her treatment consisted of 31 daily radiation treatments followed by 6 months of chemotherapy which she completed in June 2011.

Scans in January and April 2011 showed that the tumour had shrunk and treatments seemed to be successful. Kelsey was very excited to finally be finished treatment and was looking forward to spending time recovering.

Kelsey’s next MRI on July 31, 2011, delivered devastating news. The tumour had returned, was on the brain stem and was once again aggressive. Doctors informed us that they weren’t sure how much time Kelsey had left. The following week we met with Dr. Whitton at the Juravinski Cancer Centre (JCC) and he introduced us to the CyberKnife Radiation Treatment. This is a new, more advanced, concise and condensed treatment.

Kelsey would be receiving 5 treatments from August 15 to 19 which was equivalent to receiving 3 weeks of treatment with the older radiation technology. Kelsey was rushed into treatment the following week and she was the first child to have this treatment at the JCC. On the first day of treatment, Kelsey was unable to hold her head up, her speech was slurred because of the loss of control on the right side of her face and she had little appetite. On day 3 of the treatment, Kelsey was able to hold her head up, her speech had improved and her appetite was picking up.

By the 5th day of treatment, Kelsey was sitting up and singing on her way to treatment and starving! As soon as she was finished treatment, which took approximately 45 minutes each day, we had to get her to the cafeteria where she enjoyed egg and cheese on a bagel.

Results seemed to be almost immediate but now we had to wait 4 – 6 weeks before another MRI could be completed. On the morning of September 27, Kelsey went in for the MRI. That afternoon, the doctors and neurologists were holding a brain tumour clinic where MRI scans were reviewed. The nurse told me that when Kelsey’s scan came up, the whole room was quiet and everyone was holding their breath.

The radiologist held up the scan and said that she was so impressed with it, the room let out a huge sigh of relief as there was an overall improvement in her condition. The tumours were remarkably smaller! Seeing was believing, the following week we saw the scans for ourselves and Kelsey was congratulated on the great results. What a huge relief for Kelsey and our entire family. Finally, we shed tears of joy!

With the tumour recurrence, Kelsey lost alot of strength and movement which she had previously regained on her left side. Recovery is a slow and ongoing process with setbacks along the way; however, Kelsey’s goal is to one day walk again.

Needless to say, this year has been the toughest year our family has had to face and despite everything that Kelsey has had to endure, including over 500 needle pokes to her body, she continues to have a positive attitude and inspires everyone that knows her.

In June 2011, Kelsey created Team Kelsey and entered a walk-a-thon to raise money for the Ronald McDonald House of Hamilton (where her family lived for months to be close to her). Team Kelsey raised approximately $15,000 for this organization and Kelsey was the top individual fundraiser. I was very proud of Kelsey that even while suffering through chemotherapy, she still wanted to help other children and families in need. In fact, immediately after the walk-a-thon, Kelsey was admitted to hospital for her final chemotherapy treatment. Kelsey also was the co-chair at the 2011 Ronald McDonald House Fundraising Gala.

Kelsey is now collecting chocolate bars for the kids at McMaster Children’s Hospital and she will be personally handing them out on Halloween morning because she knows how it feels to have to miss events such as Halloween while being in the hospital. So far, over 600 chocolate bars have been collected. Kelsey has been involved with the following organizations to raise awareness on pediatric brain tumours: Heaters Heroes; Terry Fox Run; Rick Hansen Relay; Kids are Heroes and the Brain Tumour Foundation of Canada Spring Sprint (now Brain Tumour Walk).

Kelsey’s illness has really opened our eyes to this terrible disease and we will continue to support organizations such as the Brain Tumour Foundation of Canada to hopefully one day find a cure.

Lana & Derek Hill

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