My house is clean, dishes are done, I am caught up on laundry. I have a two year old, this isn’t right.
Those were my thoughts 10 months ago when my daughter, Kyla, wouldn’t get off the couch, she only wanted to watch Finding Dory over and over again. Two weeks prior she was a fun, energetic kid waiting for her second birthday party, full of optimism and life. And within the blink of an eye all her energy was gone. I had taken her to the doctor at our offices on-call clinic, and they had diagnosed her with an ear infection, something we were no stranger to. She had had many prior to this one but there was something different about this one. It wasn’t getting better. I took her back 4 days later and same thing- got stronger antibiotics for her ear infection. Again I pointed out the bruises that we not going away, her yellowing skin, her bleeding gums, and her lack of energy as Kyla was sleeping on me yet again.
Kyla’s birthday came and went and 2 days later on November 1, I took her to our family doctor and refused to see anyone else. He knows my family, I trusted him. Kyla couldn’t walk that morning and little did I know, the night before, on Halloween, was the last day she would walk for the next 7 weeks. Within 10 minutes of talking to us, my doctor had us going to Grand River Hospital as he explained to me, that this needed to be attended to immediately by the paediatrician at grand river hospital. My doctor suspected what the diagnoses was and knew we needed blood tests to confirm. He didn’t tell me, of course, to make sure I got to the hospital safe and not panicked.
From the moment we got to Grand River, things moved quickly. We saw the doctor, we got all the tests done, and within 2 hours we were being told “ I have bad news. Kyla has leukemia.”
My world shattered. Time stopped.
The staff in the clinic jumped into action and knew exactly what to do. My husband came immediately and met with us and they educated him with everything that they told me as well. They answered every question and tended to our immediate needs. We needed to lay down. I was 8 weeks pregnant with our second baby and I had my two year old laying on me sleeping. I wasn’t about to ever let her go so they got me a bed to lay with her. They got us a room and started transfusions on Kyla right away. The next day we got transferred to London Health Science Centre Children’s Hospital.
From that point on, when we returned home in December, Grand River was our pogo clinic and is for the next few years. Being able to stay close to home during my pregnancy and always staying close to Kyla was amazing and a comfort that I didn’t know I needed. To have the same people help us every time we went to clinic, the same friendly faces, and watch them make such a connection with Kyla helped with the daunting fear that my little girl was still getting chemo.
Grand River pogo clinic is not scary for Kyla. She has no fear of going in. She loves the staff and considers them her friends, as do I. She runs down the halls to say hello and sits and “helps” them administer the chemo. She is incredibly strong and we are so fortunate to have the pogo staff so close to us to keep our family together more often.
10 months down 17 months to go.
On July 5th, 2013, while preparing for a weekend getaway, we got the call from our family
doctor saying that they had received the results from our son Desi’s blood-work, and asked
that we come in as soon as possible. Our doctor gave us the news. Desi had T-Cell, Acute
Lymphoblastic Leukemia, and they needed to get him to Sick Kids to start treatment
Upon arrival at Sick Kids, the doctors were concerned with Desi’s very high white blood cell
count, and a large mediastinal mass in his chest. The doctors told us that the next 48 hours
would be critical for Desi to respond to the treatments. The team worked tirelessly to shrink
the mass in Desi's chest and to stop his white blood cell count from climbing, all the while
maintaining his kidney functions.
Managing all three of those complications meant constant monitoring day and night. It
meant triple maintenance via IV saline solution (triple the fluid normally needed). It also
meant electrolyte blood test every hour to test for tumor lysis, and complete blood counts
every two hours to check white blood cell count. The doctors were also watching his kidney
functions very closely, and using a set of drugs to protect his kidneys. All that monitoring
meant that nobody got any sleep the first two nights. Thankfully, with the skill and care of his
doctors and the staff, Desi made it through those two days, and his counts normalized.
That was the beginning of our son’s (and our family’s) journey through cancer. When it was
all said and done, Desi would undergo the high risk treatment protocol (including a more
intense chemotherapy regimen and cranial radiation). We would end up spending one
month at Sick Kids, before having his care transferred to Children’s Hospital at London
Health Sciences Centre (LHSC) as his primary care center, and Grand River Hospital as his
satellite clinic, where Desi would finish both the front line and maintenance phases of his
Desi finished his treatment protocol on November 6th, 2016 and we couldn’t be more
grateful! Today, he is a healthy, happy kid, who enjoys swimming, soccer, playing with his
friends, and playing guitar! We wouldn’t be where we are today, without the support of our
family, friends, the great staff at Sick Kids, Grand River Hospital and London Children’s
Hospital and organizations like POGO.
We’re proud to support and fund raise for the annual Kitchener Kids with Cancer Run, in
support of POGO, so that they may continue to support and advocate for the doctors,
children, families and survivors who have dealt with pediatric cancer.
It was the beginning of Thanksgiving weekend 2015 when we received the devastating news. Gage had just been diagnosed with A.L.L. Leukemia. We didn’t have many signs or symptoms, he just didn’t seem right. I had him at the doctor earlier in the week with a fever that wouldn’t break. After noticing some spots on his belly and groin I decided to take him back to my doctor. She immediately sent me to Grand River Hospital where after routine bloodwork, they sat us down and gave us the news. That night we were sent to Children’s hospital in London. We started the beginning of an extremely long road of chemotherapy and more hospital visits we could even count. We returned home 5 weeks later, spent most of the following year at home in isolation, trying to keep Gage as healthy as we could, away from germs, and any illnesses. Almost 3 years later we are in the maintenance phase of his protocol. Gage receives daily oral chemo and many other drugs weekly to keep his blood counts in a healthy range for him. We have had plenty of ups and downs, experienced more emotions than we ever thought possible. One of the positive things we discovered on this journey was all the amazing support we receive. I joined a POGO support group, our doctors and nurses have eased our worries each and every time we talk to them, our friends and family still continue to help and support us on this long, eventful journey. We wouldn’t be able to make it through without all the love and help we get. We will now continue to give support to as many other families as we can through events like the POGO race and many fundraisers. We are nearing the end of our Chemo journey, but our lives have forever been changed by this. We know how valuable knowledge, support and love can be and we will continue to pay it forward wherever possible.
You can never ever prepare yourself as a parent, or anyone for that matter, for receiving the news that your child has cancer or any serious illness. It hits you like a ton of bricks that you never saw coming and then in seconds your family life changes. The worry, the stress, the wondering, the heartbreak, the feeling of lack of control, all sets in but you just power through the events minute by minute until the daily/weekly hospital visits and course of treatment becomes your new normal. Our life changed January 31, 2018.
Before Jonathan (aka: JT) was diagnosed he was a very active and energetic 10 year old boy. You could never slow him down. He was into many different activities – hockey, baseball, soccer, skiing, running, music, etc. Thinking back months before his diagnosis, he was experiencing symptoms that you’d not think it was cancer related. In December/January, JT started missing lots of school days for feeling unwell and then developed enlarged glands in his neck; with one lymph node popping out over his collar bone which landed us back at the doctor. On the Tuesday, JT was sent for blood work and x-rays, and by the next morning on January 31, we received the most unsettling phone call with the results of his tests showing lymph nodes all in his chest and the initial fear that he may have cancer. We immediately were sent to Grand River hospital for more tests and by Friday of that week JT was admitted to Sick Kids in Toronto for extensive tests and biopsies to determine what JT will be up against. On February 5, 2018, JT was officially diagnosed with Non-Hodgkin’s T-Cell Lymphoblastic Lymphoma, Stage 3; a fairly uncommon form of cancer, especially in children. Cancerous lymph nodes were found in his neck, arm pits, groin, kidneys, with the largest mass in his chest that quickly started to compromise his breathing and which explained his shortness in breath and chest pains he experienced over the past few months. Chemo therapy started immediately, and by the end of the first phase of treatment (Induction), his chest mass of 13 cm was significantly decreased to 3 cm which suggested he was responding extremely well to the treatment and on the positive path. During the critical early stages of his treatment, JT and his mom stayed at Ronald McDonald House in Toronto as KW was deemed too far away from his care at Sick Kids. Being away from home and apart from his dad and sister was hard on all of us. After 3 months, we moved back home where he will now receive most of his treatment at Grand River hospital with occasional visits and treatment at Sick Kids.
Being home has been the best medicine for JT as he can be back with family and friends who have all been extremely supportive and generous during this journey. His treatment protocol is for 2.5 years so he still has a long road ahead of him but we are constantly reassured by the doctors for a positive outcome. Unfortunately, JT’s journey won’t be easy with the many ups and downs he experiences from the side effects of chemo. When you think you are over the initial shock of diagnosis, then you get hit with all the side effects, and it’s heartbreaking to watch a child or anyone, have to go through all that. JT is such a brave, strong boy. He has been a trooper through everything so far. “You never know how strong you are until being strong is the only choice you have”. With the amazing support of family, friends, the community, staff at Sick Kids and Grand River Hospital and organizations like POGO, it truly helps families get through the tough time and helps relieve some of the pressures that are faced. We are grateful for all the support we have received and the fundraising for programs and research being done to help all kids battling cancer. With Strength, Courage, and Hope - Together we can get through it and lives can be changed.
Taya’s first year of life was the same as any other happy, healthy one year old. At about 16 months old, Taya began to experience bouts of repeated vomiting. Responding to the unexplained sickness, her parents took her to a walk-in medical clinic to be examined; unfortunately, the family’s regular physician was on vacation at the time. The attending physician sent the family home with a diagnosis of the common flu. With the vomiting persisting, the family visited multiple clinics in the weeks to follow. Each visit resulted in the same flu diagnosis. With the flu symptoms continuing, Taya was taken to her regular family doctor upon his return from vacation. Recognizing the severity of the situation, their family doctor immediately sent Taya to Grand River Hospital and, under the care of Dr. Jodi Rosner, Taya was sent for a CT scan. Dr. Rosner delivered the devastating news to the family that there was a mass in Taya’s brain and that she was being immediately transferred to Sick Kids Hospital in Toronto for further care.
Once at SickKids, Taya underwent brain surgery in an attempt to remove the tumour. The 8-hour procedure was successful in removing a good portion of the mass however not all of it could be extracted. During the days following surgery, Taya was diagnosed with an extremely rare and aggressive Embryonal brain tumour. The medical team at SickKids proceeded to fight the tumour with the most aggressive form of cancer treatment that Taya could endure. Although Taya was only 16 months of age, she demonstrated to her parents and all of those around her, a remarkable level of bravery and tolerance having to undergo extremely intrusive brain surgery and cancer treatment. She had to relearn the very basic motor skills, like walking, since these skills were disrupted during surgery. Throughout all of this, Taya never complained and woke each day with an optimistic, heart-warming smile.
Over the course of a few months, the chemotherapy successfully shrunk the tumour. The medical team decided that a second surgery would be scheduled to remove the final remnants. To give Taya’s body time to strengthen before the 2nd surgery, the chemotherapy treatment was halted. Unfortunately, during this treatment hiatus her family learnt that the tumour had grown back, and with a vengeance. It was concluded that nothing further could be done to help Taya as her tumour was just too aggressive.
Taya passed away at 22 months of age, on Dec 25th, 2007, surrounded by loving family and friends. Although this story is one of great loss, Taya’s family has created a legacy of giving in Taya’s memory. Taya’s bravery and continued love and appreciation of life, despite everything she went through, served as inspiration to her family. She inspired a drive to help others living through same, unthinkable circumstances. Through walk/runs, that have supported fundamental programs and research at both POGO and SickKids, Taya’s loved ones hope to ensure better outcomes for other children with cancer. This year, Taya’s family and friends are proud to be joining the Kitchener Kids with Cancer Run & Walk to continue Taya’s legacy of joy and optimism. Together, they truly strive to provide better outcomes and support for families with children battling cancer.
A Day in the Life of Sara Jean
At six years old, Sara Jean knows way more about the ins and outs of a hospital than any child should have to. That’s because she has spent half of her young life in cancer treatment.
It started with a hard lump in her forearm. Her parents thought it was bone, her doctor thought it might be a hematoma under the skin, but just days after her 3rd birthday, Sara Jean was diagnosed with rhabdomyosarcoma—a rare form of cancer. After six weeks of radiation, 46 weeks of chemotherapy and a surgery that removed muscle from her forearm, Sara Jean went into remission. But in 2012 they found another lump in the same arm, and she began a new course of treatment. Today, Sara Jean is on maintenance chemotherapy that is likely to continue through the end of the year, but that isn’t holding her back. She plays hockey, loves school and has a repertoire of impressive Ninja moves. Her hair is emblazoned with a bold streak of pink, and at six years old she is a fiery role model to her younger brother and sister.
Christopher was a happy healthy baby who was born with a small lesion on the top of head that everyone thought was a scratch. As time passed, he met most of his milestones but was plagued with chest infections, multiple ear infections and slowly stopped growing, eventually falling off the growth chart. He was never sick enough to warrant a trip to the hospital but never well enough to be away from the doctors. We were referred to Dr. Rosner, who immediately admitted him to Grand River hospital thinking he had CF. When that test was negative, we were transferred to The Hospital for Sick Children (Sick Kids) in Toronto. After numerous tests and a biopsy of the scar on his head, Christopher was diagnosed with a rare cancer called Langerhans Cell Histiocytosis. It was in his lungs, skin, mastoid and jaw. His liver and spleen were also enlarged. In 2017, he sadly relapsed with CNS/ND involvement.
Christopher began a lengthy, life long course of chemotherapy and testing. He responded really well to each round however, the chemo was never quite enough to keep the cancer away for good. Christopher has spent his whole life in and out of the hospital. He is now on his 5th protocol after almost a 10 year break. He will be on chemotherapy for at least another 6 -8 months. Chemotherapy as a young adult is extremely hard emotionally, and physically. Being able to do most of the treatment locally has eased some of the burdens that commuting would have brought. It also allowed our family to retain employment and juggle the day to day appointments that chronic sickness brings. It also allows Christopher to stay in touch with his sister, friends and school. He just graduated from high school while on chemo with help from POGO who have been a huge supporter and advocate, as well as, helping with post-secondary education planning.
When this journey began 18 years ago, no one thought we would still be fighting, but with all the support from POGO, GRH staff, the SickKids team and our exceptional group of friends and family we are stronger than ever! Please help us raise money for POGO so that other kids get the same type of care locally! We are forever grateful!
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© 2019 Kitchener Kids with Cancer 5K Run & Walk