TORI ALEXANDRA CARSWELL
Tori Alexandra Carswell
‘ Castles in the Sand ‘
Sometimes life’s most precious things Slip too quickly from our hands… Snowflakes, rainbows, childhood, Castles in the Sand.
God gave us a special spot to preserve them in our hearts; A forever place where all we love lingers when we part.
Fireflies and autumn leaves, Roses, kittens, dreams, Icicles, sunrise, spider webs, Mornings dew, moon beams;
Butterflies and baby birds, Flowers that bloom in spring… Perhaps in life God’s greatest gifts Are blessed by Him with wings.
TORI’S HELPING HANDS
Tori Alexandra Carswell, a beautiful baby girl was born July 1st, 1994 (Canada Day). This adorable baby grew to be a caring and very sensitive little girl.
At the age of 5 ½, Tori began having back and leg pain. After visiting several doctors and going through many tests, Tori and her family were given the devastating diagnosis that Tori had Stage IV Neuroblastoma. It was just 3 weeks shy of her 6th birthday.
Most people have never heard of neuroblastoma, a rare type of cancer that almost always occurs in infants and young children, however it is the most common type of cancer in infants. It still remains rare enough that many doctors have never cared for a child with neuroblastoma.
Although neuroblastoma sometimes forms before a child is born, it usually isn’t found until later, when the tumor begins to grow and affect the body. If neuroblastoma is diagnosed in infancy, the chance of recovery is good.
Neuroblastoma is a rare disease in which a solid tumor (a lump or mass caused by uncontrolled or abnormal cell growth) is formed by special nerve cells called neuroblasts. Normally, these immature cells grow and mature into functioning nerve cells. But in neuroblastoma, they become cancer cells instead.
Neuroblastoma most commonly starts in the tissue of the adrenal glands, the triangular glands on top of the kidneys that produce hormones responsible for controlling heart rate, blood pressure, and other important functions. Like other cancers, neuroblastoma can spread to other parts of the body, such as the lymph nodes, skin, liver, and bones.
Tori endured the same grueling treatment that most of the kids experience with Neuroblastoma; many rounds of chemotherapy, surgery, stem cell transplant and radiation. Despite all of the treatment protocols, within 1 year, Tori’s cancer had returned.
At this point Tori’s family was given the news that Tori may have only a 5% chance of survival, and were given the option of doing nothing. Tori and her family wouldn’t accept those odds and they refused to give up.
The community of Stittsville (outside of Ottawa), and many friends and family rallied around Tori and her family in the summer and fall of 2001. Over $100,000 was raised to assist with medical and travel costs, because the only option was for Tori to go outside of Canada for treatment.
Tori was put on more chemo, and once the disease was under control, traveled to Sloan Kettering in New York City to do an experimental type of cancer treatment called 3F8s. These treatments were extremely painful, and unfortunately resulted in no positive
results and did not buy Tori the additional time that the family prayed for.
Tori started back on the chemo, but had to discontinue after she experienced a serious infection and ended up in ICU at CHEO (Children’s Hospital of Eastern). From there they tried MIBG therapy, which was her easiest treatment, but did little to stop the progression of the disease.
The disease at this point, had spread to Tori’s lungs and liver and she was given weeks to live. It was Christmas 2003, and Tori was just 9 ½ years old. The family had a wonderful Christmas and New Year, with Tori where she felt great and could do most things that children do. That was their miracle! In January 2004 Tori’s health quickly deteriorated, and she had to be admitted to hospital to control the pain in her belly. Tori passed away on January 16, 2004.
Tori, with her infectious smile and passion for life became an inspiration to many, as friends, family and the community did everything they could to give Tori a chance. As it turned out, it was Tori who was giving everyone else something special! Tori’s courage and strength throughout her battle, inspired all to carry on each day, and to appreciate the little things in life. She taught everyone she met not to worry about the petty things, and to live each day like it’s your last!
Tori’s Helping Handwas established in 2005, in Tori’s memory, and is part of the Candlelighters Childhood Cancer Support Programs Inc. This program provides funds to palliative care oncology children and their families, as well as to families whose children require a transplant. The money for palliative children will help the families provide much needed comfort in their child’s last days. This comfort might come in the way of a comfortable chair, a spa visit, a puppy, etc. Whatever can be offered to help even in the slightest way.
An annual memorial golf tournament in Tori’s name has been running since 2004 and Tori’s family have worked diligently to continue to raise money and awareness for childhood cancer in Tori’s name. To date, TORI’S HELPING HAND has donated over $333,700.00 to childhood cancer charities.
It never ceases to amaze me how these incredible, young champions can endure so much in their young lives and yet have such a zest for life and manage to meet every medical challenge with the determination and maturity of an adult.
I met Tori a couple of times when I was visiting my friend Paige in the Cancer ward at CHEO and I will always remember her adorable smile and friendly nature. She was ethereal. That is the only word that I can come up with.
No one can ever make sense of why kids get cancer, or why they have to go through what they go through to fight their cancer demons but we CAN help to make a difference in their lives.
- We can donate to a childhood cancer charity.
- We can donate to Tori’s Helping Hand to assist another young cancer champion and their family as they struggle to find peace and support in the palliative world of childhood cancer.
- We can assist organizations like the Candlelighters Childhood Cancer Support Inc. to make the journey a little bit easier for these amazing young heroes and their families.
- We can share Tori’s story and inform others about the amazing charity that her family created and continues to raise funds through.
Help me to spread awareness! Help me to honour Tori’s memory through my blog by introducing Tori’s Helping Hand to some of your friends and family.