Over Christmas 2021 we noticed our 8 year old son Cain was limping and had a small lump on his upper shin. A visit to our Minnedosa Doctor on December 31, 2021 showed an abnormality which was immediately forwarded to the Pediatric oncologist clinic at Manitoba Cancer Care. On January 1, 2022 Cain had a CT and MRI scan in Winnipeg after which an appointment with the oncologist informed us that Cain had probable osteosarcoma (bone cancer) on his right tibia bone.
A biopsy on January 20 and pet scan on January 21, 2022 showed that the tumour was localized to his right tibia bone and on February 1st Cain was officially diagnosed with osteosarcoma.
On February 8 Cain had a surgery to install a port to administer chemotherapy and he started treatment on February 15. The chemo treatment consists of six cycles lasting 29 weeks not including delays and surgery occurs on the 11th week to remove the tumour. Cain’s leg surgery has been scheduled for May 28 after which he will have a few weeks to recover before starting chemotherapy again.
Cain‘s treatment is expected to go until the end of December 2022 and all his chemo treatments have to be in patient in the Winnipeg Children’s Hospital. So far, Cain has had to stay at the Brandon regional Hospital twice for developing fevers while being neutropenic (having no white bloods cell) as a result of chemo treatments.
Cain has two siblings. His brother Pierce is four and his sister Arwen is six. In between chemo treatments and fevers Cain likes to spend his time with his family in Minnedosa or when not possible his family comes to Winnipeg to be with him. We are hoping to bring the kids to Winnipeg to have some hospital visits once school is out. Pierce and Arwen have shown us how powerful the love of family can be and their importance In Cain’s life it is truly magic to see Cain gain strength and heal when they are all together. Cain loves his family and community and wants nothing more than to be home playing with Lego, crafting, building and playing with his family and friends. Cain’s favourite thing to do in the hospital is to attend and take part in the Children’s Hospital Today Show.
Our lives have completely changed since Cain was diagnosed with osteosarcoma with splitting our time between the hospital in Winnipeg, Brandon and home. We are thankful that Cain‘s mom is able to take a leave from work during this time to care for him.
We are truly grateful and feel blessed for the continued support from our communities, organizations, family, and friends who have been part of our journey. We cannot express enough how much we appreciate the kindness and love we have experienced during this difficult time.
Cain has a long battle ahead and will require many months of physiotherapy after his surgery, but he has shown such resilience and strength so far and we are so proud of our osteowarrior.
Matthew was born May 5, 2016, 3.5 months early at just 24.5 weeks gestation and weighing 1lb 6oz.
Everything was going along just fine pregnancy wise, we were excited to be welcoming our second son into the world!
One night something didn't feel quite right, contractions were coming along strong. We rushed into Brandon hospital, after some check-ups my water broke, next we know the air-jet was on the way from Winnipeg to pick me up, I got flown to Winnipeg Health Sciences Center, my husband raced along to meet us there.
The day was a blur, doctor consults, decisions, steroids, it was all very overwhelming. When presented with the fact that our son will be arriving that evening, we were faced with the toughest decision, at just over 24 weeks gestation, his chance of survival was just 8%, we had to choose between life and death. We chose life, we asked the doctors to do whatever they can to try to save our little boy!
We were prepared, I remember being in the birthing room ready to push, looking at my husband and saying "you know our baby might not cry", I was in tears.
A few minutes later at 2:04am, with the NICU team standing by, ready to take my baby to the next room for intervention, Matthew was born. He let out the tiniest cry, I felt relief, but knew we would have a long road ahead.
I was taken back to my room, my husband was escorted to be at our son's side. Matthew's doctor took pictures of Matthew and my husband Sean, once Matthew was intubated and stable enough to be transferred to the NICU. Where he would spend the next 4 months. During that time, I was fortunate enough to have accommodation at Ronald McDonald House, which was just up the street from the hospital. This allowed me to spend as much time near Matthew as possible.
Each day that passed, his survival rate went up, slowly but the percentage was looking more positive.
The days were long, especially with my husband and other son Jacob only being able to come to winnipeg on weekends due to school and work. Our whole lives were turned upside down. Each day I was surrounded by doctors reports, bloodtests, blood transfusions, MRI's, ultrasounds, etc.
Matthew suffered from a Grade 4 brain bleed, which was closely monitored.
He needed blood transfusions, due to the many blood tests that were necessary to monitor any abnormalities, and his tiny body wasn't producing enough blood to keep up.
His little lungs were not fully developed, he had to be on a jet ventilator for the first few weeks, then transferred to CPAP for the next 2 months, during that time or trial and error he also suffered collapsed lungs, requiring intervention again. Micro-preemies are forgetful to breath as well, so was was on a caffeine drip, and oxygen monitors watching for dips.
Matthew's eyes were affected from being on oxygen support, he developed a condition called ROP, Retinopathy of prematurity is an eye disease that can happen in premature babies. It causes abnormal blood vessels to grow in the retina, and can lead to blindness. So he required multiple injections into his eyes to help with the blood vessel growth.
In December 2016 he underwent laser eye surgery to "weld" down his retinas.
Now we are on close monitoring for his hearing, which can also be affected from oxygen support, but often not discovered until age 4-6 years. As of right now he is showing signs of hearing loss in his left ear, but with him being so young we go for hearing assessments every 3 months.
After 4 long months, it was finally time to go home, all of us as a family again!
But that wasn't the end, post discharge was followed my countless trip to Winnipeg, a 3.5 hour drive each way from home, sometimes overnight as we try to book appointments as close together as possible. He was and still is closely monitored by nutritionists, ophthalmology, physio therapy, speech, hearing and other assessments.
We are very fortunate that our son is growing, learning and keeping up with his peers. We wants to be just like his big brother Jacob (11) and looks up to him very much. Matthew loves his family, his dog Buddy, hockey, playing outside as much as possible, he like to read books and tell stories and of course he loves Superheros and Paw Patrol!
Our lives are returning to somewhat normal after the last 3 years, appointments are less frequent all the time!
We are very thankful for all of our family, friends and complete strangers who have offered their love and support during this time. We are looking forward to making many more memories!
Update on Matthew
Matthew started Kindergarten in fall of 2021, not too much of a change for him since he has been in full time daycare since he was much younger and with most of his peers; but, Matthew doesn't like change, he has some anxiety with new changes in routine but has adjusted well. He enjoys going to the "big school" and still attends the afterschool program on most days at daycare.
Matthew does very well academically, he loves to read, do math and build things with Lego blocks. He has some fine motor delays, such as holding and controlling a pencil, cutting with scissors and colouring within the lines. He has specialists that work with him and practice at home. He attends speech sessions to help with certain areas, but he will talk your ear off if you let him! Matthew still attends to an audiologist for his hearing tests and has begun wearing a hearing aid in his left ear, this seems to be helping and we are waiting for an upcoming MRI on his inner auditory canals to see if there is something more going on inside that may be treatable. Matthew has recently been referred to a orthopedic surgeon for a consultation on his movement in his legs and feet, this will be monitored regularly to see if the in-toeing and tip toe walking will improve over time or if he will need some assistance. We have some physio exercises that we work on to help strengthen his Matthew's eyes have always been a bit of concern, we regularly see a pediatric ophthalmologist in Winnipeg for this. He received a Botox treatment in both eyes in November 2021 to help keep them from being "lazy" this treatment is supposed to help strengthen the eye muscles to focus straight, another treatment may be required as time passes.
Overall he is a pretty good sport with attending appointments and travelling, but does get tired or frustrated sometimes.
Matthew loves the outdoors, building Lego, playing Super Mario and hanging out with his brother Jake and friends.
He continues to surprise us with his knowledge, growth, love and persistence!
Wyatt is an 8-year old boy, who is outgoing, intelligent and bursting with a wonderful personality, Wyatt also lives with Stage 4 Chronic Kidney Disease. At two months old Wyatt was diagnosed with Renal Dysplasia and Bilateral Vesicoureteral Reflux, meaning he has under developed kidneys and is missing a few valves that stop the backflow of urine from his kidneys to his bladder, at the time of diagnosis he had a Renal function of just 17%.
Since his diagnosis in 2013, Wyatt has undergone numerous medical appointments, procedures and tests with multiple specialists at the Health Sciences Center in Winnipeg. He has a wonderful team of Nephrologists, that we meet with every 4-6 weeks in Winnipeg. He is also followed by a Urologist (Bladder) and Cardiologist. While his main medical concerns are his Kidneys and their function or lack of, he is being monitored by his Cardiology team more closely as in 2020, they discovered, through his yearly Echo/EKG, that he had an artery that was closing and causing a pressure build up, which was essentially preventing proper blood flow from his heart to his head.
Very quickly a plan was set in motion to fly Wyatt and myself out to Edmonton to have a heart catheter procedure and stent placed. While in surgery, his specialist was unable to place the stent due to Wyatt having a port a cath placed in that particular vein. It was decided after his return home, that his port a cath of 5.5 years was no longer benefiting him but rather causing further damage to the vein, so in 2021 Wyatt had his port removed. He now is being monitored every 6 months to watch the heart vein, as the heart cath was a temporary fix and he will need to go back to Edmonton at some point to have a stent placed. Wyatt has overcome many of the expectations his medical team has laid out before him, however his journey with kidney disease will be lifelong. We have discussed his medical options and receiving a Kidney Transplant will be a huge gift of life that his future holds. His kidneys are currently functioning at 22%, which is just enough to keep him on hold on the Manitoba Transplant list.
As Wyatt continues to grow, he will outgrow his kidneys filtering capabilities and the transplant will become inevitable, until such time we live in “limbo”, and but are grateful for every day he gets to just be a kid. Currently, Wyatt is on a number of medications to maintain his blood pressure and other kidney related issues, he has monthly labs done to monitor his kidney function and associated numbers. We travel to Winnipeg on a regular basis for multiple specialist appointments that can only be done at the Children’s Hospital in Winnipeg.
Although Wyatt was born with kidney disease, it is often hard to see, he loves biking, playing piano, skateboarding and the outdoors. Wyatt lives with his mother and father, Amy and James Johnson, as well as his two younger brothers, Paxton and Grayson. He attends the annual Kidney walks and talks to his peers about his disease and how he will need a new kidney one day. Our family however is grateful for each and every day that we get to spend with Wyatt, we are even more so grateful for the Little Valley Jamboree family for embracing our family throughout Wyatt's journey with kidney disease.