Diagnosis – how it happened

The morning of Sept 14th, 2014 … We were on our way to school and Paytan had been having difficulty sleeping lying down, or eating. She, in fact had pretty much stopped eating all together. Just little bits of soup or tea. Trying to sleep was a major chore!

We had recently moved her room downstairs to the basement, as she was getting older and wanted more of a “big girl” room. But she had not slept in her bed for over a week.

When I came down early in the morning to wake her for school, I actually found her sleeping sitting, well propted up. Her sides had been really bothering her. …

See the girls sometimes would get silly with each other. And that sometimes meant that they didn’t always listen to mom’s “be careful, someone will get hurt” comments. And sure enough, they had fallen off the bed in Hailey’s room. Paytan was first and Hailey on top of her. Well, unknown to us, Paytan’s liver and spleen were getting larger. So when Hailey came down on top of her, Paytan let out a very loud and pain filled scream.

Our doctor assured us that it would most likely a bruised rib or muscle and it should go away over the next few days. As Paytan continued to stop eating and complaining of her side…. I was really starting to think that there was more to the sore side than a bruised muscle.

Her tummy was actually starting to look distended.

The morning of September 14th, after I had taken the girls to school, I was walking back home to get ready to leave for work. I was walking down the path that leads to our dead end road… And emerging from the path to the road, my heart sank and I had this overwhelming devastating feeling of loss come over me.

I had lost my husband a little more than 3 years ago … And my heart was so very afraid any more loss of my family. My heart sank as I walked and went over all the symptoms Paytan had been complaining about. I made my mind up then, we would go to the hospital that evening and have her checked out.

Upon my arrival home in the evening, my baby was curled up on my bed, crying with no tears coming out and burning up. So, bundled her up and off to the hospital we went. We went to the local community hospital, because I knew it would be so busy, and our wait wouldn’t be too long for a room for her to lay down in. About 20 min we were in a room and the nurse was listening to everything we had to say. It didn’t take her long to come back with needles to take blood. Wow! That was almost as bad as Paytan as feeling… Paytan was afraid of needles. (reason for this is found in the talk about Diabetes and my late husband and dialysis).

The nurse assured Paytan that the needle was one that they used on babies and the hurt would not be as bad.   Well, that helped til she actually put the needle in her arm…. I held my baby’s other hand and kissed her head while the took several vials of blood. The nurse said it would be a little bit for the results, but they wanted us to wait in the room.

Paytan and I discussed what we thought could be the problem… Because she was so very tired and looking so pale… Almost white, I was thinking maybe mono.

Not too long, the nurse and two doctors came back into the room. There was no discussion at all. The senior of the doctors, handed me an envelop and “told” me that we leave now and head straight to CHEO. That CHEO was waiting for us to arrive.

Well, that put a huge scare into me and my daughter … But ok, off we went!

I had called home to let them know what was going on… And asked if I should look at the paperwork… Decided not… And off we went, with no stops in between.

We got to CHEO… And parked the car. Slowly walked up the ramp and into Emgency. The security guard must have been told what to look for, as he greeting us and immediately took us to a remote and isolated room with glass doors. Wow! I thought, man this must be mono and we are contagious!

Little did I know!!!

The in came nurses and more nurses and then doctors. Every time they said it would be ok for her to have a rest and close her eyes, more doctors and nurses and needles…. We had arrived their around 7:00 pm and by 11:00 pm I think we had seen everyone in the emergency dept. We still were not being told anything… Just tests and blood work. They gave Paytan medication to lower her temperature because by now it had risen to over 105 degrees Celsius!

We tried several more times to have a quick nap… And then around the wee hours of the am … We were greeted with 7 doctors of the oncology department. Oncology??? Isn’t that for cancer??

We do not have cancer… Why are you here??

Well, as they began to inform us… Paytan’s blood has been tested and they have found cancer in her blood. They call this type of cancer Leukemia. My heart sank!! And a lump in my throat! WHAT!!!?? This cant be true! You will have to test it again!

But the doctors countered with the fact that the other hospital had already confirmed, and that they had done the tests twice … And here now CHEO had also run the tests twice. It was definitely, leukemia.

BUT … They needed to do a lumbar puncture and spinal tap to determine the exact type of leukemia she had. That would be scheduled for first thing in the morning, In the meantime, they would be giving Paytan blood to help give her a little more energy and feel a little better.

What I didn’t know then, was that Paytan’s blood had not so many red blood cell anymore. Her system was being bombarded with white blood cell that went crazy. The white blood cells were multiplying at a fast rate and squishing out any possible room for the red blood cells. The red blood cells carry oxygen to all the cells in the body. When these cells are reduced, you get tired, pale and bruise very easily.