Wish Children

Emily

In the spring of 2012, Emily’s life was flipped upside down.  A physically active 10 year old, she was involved in gymnastics, swimming and soccer, keeping herself busy in the sporting arena.  Just days after competing in a soccer tournament, and a few days prior to Easter, Emily let her parents know that she was losing quite a bit of blood.  Although concerned, and having taken her to a medical clinic that Thursday evening, it was not until the following week that things began to move quite quickly.  At Saskatoon’s Royal University Hospital, Emily was diagnosed with Ulcerative Colitis.

At RUH, Emily was immediately put on a high dose of immuno suppressants and antibiotics to stop the bleeding in her large intestine.  When this treatment failed to work, doctors introduced another drug, remicade, which managed to decrease the amount of bleeding significantly.  Satisfied with the results of the second treatment, Emily was sent home and instructed to visit Regina General the following week for another round. “We were at home for two days when Emily’s bleeding again became profuse,” her mom Cynthia said.  Rushed to the hospital by her father, she was treated again with the same set of drugs.  Just ten days later, doctors decided that Emily required emergency surgery that would eventually save her life.  Nearly two months after her first visit to hospital, Emily was finally able to head home to her family’s new house and begin to live her life again.

Prior to her diagnosis, Emily’s life was full of sports and physical activity, however, her focus has had to shift since her surgery.  She now plays piano and reads to fill her time, while also paying close attention to the food that she eats to avoid any sort of blockage.  Thanks to what her mom describes as “a strong family unit, extended family and faith in God,” the family has been able to overcome this medical obstacle and help Emily move forward towards continual success.

Approved for her wish in the summer of 2012, Emily had her sights set on Hawaii from the very beginning. She has always loved swimming, with hopes of becoming a lifeguard when she turns 16, and hopes to catch her first waves as a surfer.  In early February of this year, Emily headed off, with her parents and little sister, to Oahu for a week of sun, sand and surf at Hawaii’s Disney Resort.  The chance to surf, her mom Cynthia said, “would mean that she had truly concurred this disease that almost took her life…this trip truly signifies to us that the storm is over and the worst is behind us.”

 

Jaden

In November of 2010, Jaden was your typical 11 year old boy fighting a seasonal flu. Fast forward three months and his parents, Warren and Lana, started to notice changes in their usually active little boy that raised some concerns. Jaden had begun to gain weight and was choosing to participate less in his soccer games, picking spectating over playing. In mid-March, in the middle of the night, Lana’s concern escalated quickly. Hearing strange noises coming from Jaden’s bedroom, she stepped in to check in on him only to discover he “was trying to slow his heart down.”  The next month involved chest x-rays and blood tests, finally resulting in a diagnosis of Myocardiopathy, or in simpler terms, an enlarged atrium. Jaden’s medical journey had just begun.

Instructed to stop all physical activity, including recess activities, Jaden began taking prescription medication to improve the function of his heart as well as making monthly visits to his Pediatric Cardiologist.  By December of 2011, Warren and Lana were asked to consider a back-up plan for Jaden.  Permissions were granted and Jaden’s case was shared with the Western Transplant team – a group made up of 15 pediatric Cardiologists from BC to Manitoba.

In February of 2012, life became a bit of a blur for Jaden and his family. What was initially supposed to be 3 – 5 days in Edmonton to assess Jaden’s condition quickly became 20 days away from home. With his two sister’s back in Regina, Jaden went through two intense days of testing, was listed on the national transplant list as a level 3 (4 being the highest risk), underwent his first surgery to insert a defibrillator, a second surgery to fix a malfunction from his first surgery and saw his parents learn how to administer needles of epinephrine (a blood thinning medicine).  Just seven days after they were sent home, on February 23rd, Jaden was back in Edmonton receiving his new heart.  “As you can imagine, we were not prepared to be back in Edmonton so soon and were not at all organized for this adventure but, with Jaden’s excellent transplant team and the overwhelming support of our families, friends and community, we were back home on March 19th, and ready to settle into our new “normal” lifestyle.”

Jaden’s life has changed drastically since his heart transplant in February of 2012. He now takes medications every 12 hours to ensure his body continues to accept his new heart, something that will become easier with time but is a struggle for a boy of 15.  Jaden has endured weekly and bi-weekly blood tests, catheterizations of his heart and clinical visits with his transplant team over the past three years, all things that will likely continue annually for the rest of his life. 

A chance for Jaden to take the focus off of his heart and replace it with dreams for his future came in August of 2014 when he was approved for a wish!  Unsure of what to choose, Jaden is waiting to take his wish until he has truly decided what his most heartfelt wish might be, “he’s not sure what is limit is (and) he does not want to be greedy (however) we hope that the wish will instill in Jaden the values of gratitude and the importance of helping others.”

As his mom Lana said, no matter what the wish is, “it would be nice for Jaden to be rewarded for all he has endured thus far in such a short period of time with the attitude and grace of a super hero!” 

 

Kaitlyn

Described as her family’s miracle child, Kaitlyn was conceived 8 years after her mother Verna had a tubal ligation performed.  The youngest of six children, she entered this world via emergency c-section after a misread ultrasound failed to see a significant heart defect.  On July 4th, 1997, Kaitlyn was born with Hypoplastic Left Heart Syndrome, a congenital heart defect that leaves your heart with no left ventricle, no aorta and no aortic valve. She had previously been diagnosed with Situs Inversus (her organs on the opposite side of her body) and Dextracardia (her heart turned sideways). Medically, Kaitlyn’s road had just become very long.

Just 7 days after she was born, on July 11th, Kaitlyn underwent her first open heart surgery in Edmonton.  At the time, her sister created a video of the family’s newest addition to share with her classmates back home.  An emotional video, Danielle, Kaitlyn’s sister, had captured precious moments of what would be the start of a lifelong journey.  Over the next 5 years, Kaitlyn would undergo two more Norwood procedures to change the circulation of hert to better oxygenate her blood.  

As the youngest of six children, the age gap being 22 years, Kaitlyn was wonderfully cared for at home.  Her siblings assisted as if they were parents themselves, protecting her and tending to her with love and care.  Described as a “gift,” Kaitlyn’s family changed drastically with her arrival, with everybody on high alert.  At one point, her mother, Verna, ask the doctors what her daughters prognosis was and she was answered with “you and her are in for a lifetime of medical assistance.”  She never asked again.  Instead, they push forward and live life to Kaitlyn’s fullest potential.

Today, Kaitlyn is completing her grade 12 year in an alternate program at a high school in Regina. She loves animals, drama, horseback riding, and her family and friends, among other things. Although she tires easily and cannot compete physically with her peers due to her heart condition, she still finds ways to challenge herself and excel.  The medical journey may be a long one but her support system at home, and amongst her siblings and friends, extends far, encouraging her continued growth.

Approved for her wish in January of 2014, Kaitlyn continues to contemplate what her most heartfelt wish actually is.  The youngest in her family by eight years, she is challenged to choose a wish that could extend to her siblings, a wish that could be a celebration of the support that has been provided to her and that obstacles she has overcome up until now, a wish that will celebrate her! 

 

Spencer

In the summer of 2014, on a family camping trip, Spencer’s parents, Amy and Bob, noticed, for the first time, a large number of bruises on their sons’ legs. Dismissing them as normal for a 6 year old boy, they finished out the summer and Spencer started grade 1 in September as planned. However, on the third day of school the bruising came back with a vengeance.  Spencer was covered with bruises and small popped blood vessels all over his body. Concerned and scared, Amy and Bob rushed him off to the hospital to be looked at.

Spencer was admitted to emergency where doctors ran blood work to determine what the problem was.  Initially diagnosed with Idiopathic Thrombocytopenic Purpura, or simply low platelets, this diagnosis was quickly reversed when he did not respond to treatment. Concerned it was something much more serious, doctors called for a bone marrow biopsy.  Although Leukemia was ruled out, it was discovered that Spencer actually had no bone marrow at all.  Immediately moved to Saskatoon’s Royal University Hospital, Spencer was finally diagnosed with Severe Aplastic Anemia.

Life was instantly turned upside down for Spencer and his family.  While he underwent treatments in Saskatoon with his mom by his side, Bob, along little sister Piper, stayed at home to maintain some form of normalcy.  When Spencer finally returned to his daily life, he was isolated with little to no immune system. He was unable to participate in sports, play with his friends or even go back to school. A normally active little guy, in an instant, he had “lost a lot of his personal freedom.”  Now, 6 months into treatment, Spencer is responding well, however, “only time will tell” explains his mom. “If this first treatment does not work, our options are to repeat once more and then move on to an unrelated bone marrow transplant.”

Just a month after his diagnosis, Spencer was approved for a wish.  “The wish and a trip have given us something positive to look forward to,” his mom stated.  “We’ve had some difficult times and talking about our trip and all the fun we’ll have has really cheered Spencer up.”

Although his wish has not been planned yet, Spencer knows he wants to see a platypus!  So, when treatment has settled and the family is ready to set off, they will venture down to southern California to visit Disneyland, take in the San Diego Zoo and see whales at Sea World.  “It’s put a positive spin on things and has helped us to find something to be grateful for in the midst of everything.”

 

Tyson

When Tyson was born, his parents were ecstatic to hear that they had given birth to a healthy baby boy.  Although a slight heart murmur was heard when doctors checked him over, they assured Darren and Crystal, his parents, that this was quite common and not something to worry about.  However, as a precaution, an echocardiogram – a sonogram of the heart – would be performed to ensure there were no real problems.  As it was the weekend, the family was told they would have the echo early the following week.

On Monday evening, while Crystal was holding Tyson, he started turning blue in her arms. Observed for the remainder of the night by nurses, he was moved to the Neonatal Intensive Care Unit the following morning. When the echo was finally completed, Crystal and Darren were informed that they must go to Saskatoon to have a procedure done on his heart. Upon their arrival at Royal University Hospital, Tyson was officially diagnosed with Hypoplastic Left Heart Syndrome.

The next piece of news was an even further blow to Tyson’s family. Surgery was required and could only be performed in Edmonton.  However, no beds were available, and unless one opened up, he would likely die at RUH. “I would say that was the worst day in our lives for our family. We were lucky the next day he was flown out to Edmonton where they stabilized him and performed his first surgery, the Norwood Procedure, at 13 days old.”

Today, Tyson is 4 and a half. He loves superheroes and lego and started Pre-Kindergarten in September of 2014.  In his short little life he has already undergone 4 surgeries along with 3 catheterizations between each.  Continually monitored by his paediatric Cardiologist, Tyson is considered palliative as they can only repair his heart defect.  In such a short period of time, Tyson has gone through more than most people will experience in a lifetime.  

In April of 2014, at 3.5 years of age, Tyson was approved for a wish. Although the family hasn’t taken it yet, Tyson talks about going to Carsland at Disneyland in California, “he loves the movie Cars, all the characters and the whole idea of Disney, including Mickey.”

As the family continues to discuss the possibilities of a wish trip and what that might look like for Tyson, they reflect on the fact that “it will be the first time we are able to go on a big trip as a family. (It) will help Tyson move on and feel grown up.”  There is really no better to place to start looking at the future then the most magical place on earth!