Cailyn's Cancer Story - Part 1
September is Childhood Cancer Awareness Month. In honor of the 5th year of Cancer being a part of our lives I have finally decided to write down Cai’s story and share it.
I've never actually sat down and spent the time that Cailyn deserves to have me write down her story. I don't know why. Fear, denial, maybe a bit of hope to be able move on and accept that it was part of her story and she would live a long happy life. This is what I remember to the best of my ability with a little help from Facebook memories.
Spring of 2015 is the first time that I can recall symptoms showing up that were unexplainable. They came and went and changed almost daily. The most common one I remember is the headaches. Through the months of May, June and July she had headaches, joint pain, and periods of extreme tiredness and lethargy. She would be sick for a week or two and then regroup and things looked great for a few days.
Picture taken a few weeks before diagnosis at my parents farm. Summer 2015.
A specific incident that I remember is accidentally turning and knocking her head with my elbow and her crying out in pain from something that felt so light. She spent a weekend with mom in early July and was so tired. But she got up and had pancakes and we were so excited she ate. I kept saying that she rallied.
She went to summer camp at SABC over a 3 day weekend and slept pretty much the whole weekend. They said she had no energy and just couldn't keep up. We went on a family holiday to Arizona in late July and she had a wonderful week. Tons of horsing around in the pool. But something always just didn't feel right. We had previously been to urgent care twice since May. The headaches and lethargy just didn't warrant any bloodwork and no one seemed concerned. This time the Dr said it was a common diagnosis called costochondritis. Apparently there is inflammation in the chest that causes extreme pain and can be caused by activity or exercise. I recalled the tossing and horseplay in the pool and thought that made sense.
July 22, 2015
Our Annual Family Holiday to Arizona - my fam loves the heat and horsed around in the pool daily for hours!
Our family Dr was typically on holidays for much of the summer and is usually back the last week of August. I called to make an appointment for Cailyn and the receptionist said she had come back early and would see us. We went in Tuesday August 18th. I so appreciate how I can ask her for something and she trusts my gut. This wasn't the first time and certainly wasn't the last either. I asked for bloodwork. I explained that we felt like something isn't right and no one would requisition tests for us. She filled out the forms and had us go within the hour. She told me that she would have the tests done that day and call me later that night. She believed me and took action.
She called at 9:30 that night. Not with a specific answer but with a choice. Something wasn't right in Cailyn’s platelets. The numbers were all wrong. She didn't know what it was specifically but told us we should go to the Children’s Hospital, either that night or in the morning. Edward and I decided that I would take her that night.
Most of the evening in emergency is a blur but by going the immediately that night, the tests we needed were set up for the next morning. Tuesday we were in Emerg. Wednesday was pet night (where the kids get to experience the therapy pets in the hospital). Thursday we got the diagnosis. Sounds fast but I had to look back in Facebook memories to get a timeline. I was pretty sure we waited a week for diagnosis - turns out it was less than 3 days.
The moment is exactly like you see on TV. It's a small room with a table. All the doctors sit across from you and not one wants to talk first. They all have the sad face on. I hate the sad face. And then it starts- " I always hate having to tell a family this..." this. What is this? "Your daughter has cancer" I actually don't remember much after that. My bodies response to stressful situations is to forget. If I knew that about myself I would've written this all down years ago. We were given a textbook about childhood cancer. I threw it in the garbage last week. Never even cracked the cover.
