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In the spring of 2014, Caitlin and Josh Bangsund were given the news that their baby daughter, Macey, had a very rare genetic deletion known as 9p23. For months, they had been concerned about Macey missing some milestones, so it was helpful to have the diagnosis…but due to the rarity of this condition, very little was known about how it may manifest itself throughout her life.
In the fall of 2014, Macey seemed to be getting sick all the time. She clung to her mother and was often in tears. These were difficult days for the family as they knew that something wasn’t right…but it was assumed by many that her symptoms could be attributed to her genetic condition. After a few days of heightened concerns – and at the insistence of her mother-in-law who is a nurse – Caitlin and Josh took Macey to the emergency department at the Alberta Children’s Hospital. At this point, Macey was limp over Caitlin’s shoulder and the triage nurse took them in to be assessed immediately. While that night is much of a blur, the moment that the doctor came in the room and said “I want you to sit down” will be forever burned in Caitlin’s memory. It was then they were told that Macey had leukemia.
She was immediately taken to the ICU for multiple transfusions as her red blood cell count was shockingly low. She also received pain meds to help with the bone pain she had been experiencing – which was why she had been crying for weeks. The extent of her disease meant that Macey was diagnosed with High Risk Acute Lymphoblastic Leukemia. Life as they knew it was turned upside down. When Caitlin said goodbye to her sons on the evening of December 1, she could have never anticipated that she wouldn’t return home again to stay until January 23.
There have been many ups and downs along the way, but Caitlin is very grateful to the experts who have helped Macey get through her treatment. Her primary oncologist, Dr. Lucie Lafay-Cousin, often went above and beyond the call of duty – even stopping by on Christmas Day to check in and make sure they were doing okay. Nurse Elly has answered all of Caitlin’s questions with great patience and honesty. Caitlin and Josh have worked hard to find the good that is going to come out of this situation…including the fact that as a family they have been forced to slow down and see all that they have to be thankful for.