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...and then there was Cancer.


The first photo above was taken on Friday February 8, 2013. Paige had a bad cold that week. On this day in particular she was running up and down these concrete stairs waiting for her brother to get out of pre-school. Ironically, I had her sit down for this photo so she wouldn't fall down from all of her bouncing around. Her cold worsened and by the following Tuesday I brought her into the doctor, where I was told she had ear infections. Three days later on Friday February 15 my husband Chris got home from work and after looking at her and hearing what I had say said she needed to go in to the doctor again. Our regular GP was there that day and was very concerned, sending us to the hospital.  The night of Friday February 15 2013 Paige was airlifted to BC Children's Hospital. When Paige and I arrived that night at BCCH I was told they weren't sure she would make the flight there because her blast (cancer cell) count in her blood was so incredibly high. The photo on the right is Paige on Saturday February 16th, 8 days later after the photo on the left was taken. In this photo she is in ICU where they kept her for several days before she was stable enough to go up to the oncology unit for more chemotherapy. During these days in ICU she was given an apherisis, where they "clean" her blood and remove as many blast cells as they can. She went from a blast count of 263,000 to roughly 90,000 during this procedure. The photo below shows how Paige remained for several days. 
 
On Saturday February 16, 2013 we were told Paige had Acute Myeloid Leukemia. This was not the diagnosis we wanted to hear as the 5 year event free survival rate for AML is much lower than that of the more common but still devastating Acute Lymphoblastic Leukemia. Paige had some unique features to her disease, including disease present in her skin (chloromas) upon diagnosis and relapse, as well as a complex karotype and an MLL rearrangement. Despite these characteristics, and according to current protocol, Paige remained in the "normal" risk category.  The oncologists followed protocol as outlined by the Children's Oncology Group, the same treatment that all children in north america with AML in a normal risk category are treated with. 
She began chemotherapy immediately and round 1 consisted of 10 days of chemotherapy. She reached remission after the first round, meaning her blast count was less than 4% in her bone marrow. She was at 1%! However several days later the chloromas began to re-appear on her skin. Despite the reoccurance in her skin Paige remained in the "normal" risk category and was given her second round of standard protocol. Sadly, she did not reach remission and she relapsed significantly in her bone marrow and skin after round 2. It was then confirmed that Paige would be taken off of standard protocol and was at high risk of dying. These were the hardest days, as the anticipatory grief and desperation set in. 
All the while Paige continued to dance, play, giggle, jump, spin, laugh and cuddle. Doctors and nurses marvelled at how well she was through these first two rounds. She honestly was so busy while being attached to IV lines in her chest, there would be many days where a good portion were spend unwinding her, untwisting her and simply asking for her to be unhooked to play. 
The following few months were intense, awful, memorable, loving, terrifying, fun and at times a blur. Paige was finally elevated to the high risk arm of treatment protocol and given even higher doses of chemotherapy. Unfortunately one of the drugs on this round 3 exacerbated the leukaemia in her skin and she became covered in more and larger chloromas as seen below. At times her skin was too painful to touch and she was experiencing a tonne of pain. This is where we saw Paige get really ill, nauseous, tired, angry and at times despondent. She lost the glow, the smiles. Once the pain was under control, we saw the smiles through the rain, and they were bigger and brighter than ever. 
After pouring over every study that I could, learning oncology terms and statistics, it became clear that Paige needed something else. I talked off every doctor's and nurse's ear, questioned every single move, made all kinds of inferences. I had many sleepless nights wanting to save my baby girl. Chris was alongside fighting for our Paige's life, all the while keeping her happy. I was focused on St. Judes and after reviewing their studies I asked our oncologist if we could try something more targeted that was demonstrating good preliminary results. I forwarded him the study I was interested in and he followed up with the team at St. Judes to go over the details. He worked tirelessly to have these trial drugs approved and Paige was given a totally novel and targeted treatment.
 
At the beginning of June Paige started the St. Judes round and within hours was tumour lysing very rapidly; and very unexpectedly. The drugs cleared the leukaemia out of her blood that day! We were floating full of joy, feeling like we had finally found something that would mean Paige would live! After a few weeks of having her skin clear out, blood blast level clear out and bone marrow reduced down to manageable numbers, it all came rushing back. The cancer grew more furious. We were defeated and then, again, we were told that Paige would die and there is nothing else that can be done. Our worst fears realized, again. As a parent, some of us can accept this prognosis and some of us cannot. We have our own ways of dealing with hope, grief, loss, and love. And in these darkest days we dealt with it the best we could. We loved our Paige as best as we could, with the biggest broken hearts. The gravity of the situation at times did not, could not, sink in. 
 
We moved to Canuck Place Children's Hospice on July 2, 2013 and that is the wonderful place that Paige lived out the rest of her days until her little soul was given wings August 6, 2013. Rest in peace, little angel.