On the floor, covered in sanitized mats for her own protection from both germs and her unstable stature, nail painting as we pass the hours until her MRI. This will be her second MRI in two days. It’s been 2 full days of strictly IV fluids, no food or drinking, since February 21st at midnight. As she gazes at her pretty pink nail polish, I can’t stop thinking about what today will bring. Yesterday was my most difficult day as a mother; I laid my limp child in the arms of a stranger and watched them tape her eyes shut and connect her to a breathing machine, before entering her into the MRI machine. A parent’s worst fears were began at that moment and little did we know, that we were going to be the main characters of this awful nightmare. That was my worst day as a mother. Today will be different. How could today possibly be any worse I asked myself…
That was three years ago. To the day. February 23rd 2012.
I can’t remember much these days, my brain is constantly on overdrive, but I can recall exactly what I was doing, at this very moment, three years ago.
I remember what the doctors were saying behind the curtains, the fear in my husband’s silence, the tears rolling down our baby’s face as we held her down for the tenth time in two days, my heartache as they poked and prodded her tiny frail and shivering body over and over again. I remember it all. I can still hear my little boy’s voice over the phone, wondering why, for the first time ever in his 4 years, that his mama and dada had to abruptly leave him without any idea of when we would return with his baby sister. I remember not wanting to take too many pictures of this ugly new world because I didn’t want to have to remember any of it. I will never forget the 4 doctors who walked into our isolation room, shut the door behind them and lowered the volume of the Young and the Restless I had on in the background. It was 4:56pm. Abbigail was finally able to eat something after two long days of sedated tests. These doctors’ faces no longer appeared puzzled. What was once a mystery to almost every discipline in the hospital, was no longer. They now knew…what had been haunting our dear girl’s body all this time, had been found that morning. Although in complete shock, I finally was able to be honest with myself, because in my heart, I already knew. So here I was, alone with Abbigail, teaching her how to hold her fork all over again, and these 4 doctors, no longer puzzled as they smiled at Abbigail, and I noticed that yet again we have a new face in our room, whom we haven’t met yet. Neurology was no longer in the room, neither was genetics. This new gentle voice introduced himself, tagged with his profession, and that is all I needed to hear for our world to change forever. After days of sedation, hours of uncomfortable tests, over a dozen IVs and recounting the last months and days of our lives to every doctor and student in the building, four words is all it took. “I am an oncologist.” I have often wondered how these doctors could bring such terrible news to families day after day. “We found a mass on Abbigail’s kidney that has taken over her left adrenal gland,” he explained, “she has cancer and we need to remove it,” as they handed me the box of kleenex, and I remember Abbigail’s precious little baby face staring up at my tears, not even two years old yet, surely wondering what was mommy upset about. “She has cancer.” The entire time they were talking, explaining and trying to reassure me, all I could hear was “Cancer, she has cancer.” I must have blacked out for a few minutes, because the next thing I remember thinking to myself was how will I tell Matthew. He was on his way back to the hospital with our 4 year old to spend the weekend together. When he walked into our room, I didn’t have to say anything. The cold air, my silence and the way I held and looked into Abby’s eyes, he knew…
That was the fateful day; the culmination of all those weeks and months of wondering and worrying what was wrong with Abbigail. Nothing was the same ever again. Not our home, our family, our children, our marriage, even our hopes and dreams changed because from that day forward we could never forget…the life we lived,up until that day, changed drastically, with a few little words. It is often too painful to dream now, to hope and to plan for the future. Three years ago our world came crashing down on us. Matthew was sleeping in his car while I cried on a chair next to our tangled daughter in a cold barred crib. Three years ago we had to erase things off of our family calendar and replace them with countless hospital stays, chemo appointments and new therapy sessions. Although we lost so much that day, I can’t ignore the fact that we also gained so much too. Perspective. Strength. Understanding and compassion. New friends we can call family…and a closeness to one an other we never had before. Without all that we wouldn’t have been able to survive these last three years. Without all that we won’t survive the next three either. Cancer can be cured and Cancer may never come back for some but Cancer never leaves without a trace. It will always be part of who we are and how we live…sometimes bringing good and often times shedding light on the bad, but that is Cancer and we have adjusted.
This is going to hurt.
Three years ago we were told that we should have high hopes for Abbigail’s recovery and that with surgery to remove the tumour, and 6 months of chemo and an other 6 months of immunosuppressant therapy, that we should begin to see our little girl out of the hospital and off all of her medications and therapies. Three years ago we were naive and had the strength to hold tightly onto to hope.
Today is so different.
Today is three years after that day. Today we struggle to see any light at the “end.” Today we find it difficult to cope with the next hour, let alone the next treatment. Abbigail is still in recovery post transplant, she is systemically immunocompromised and she can’t attend school on so many levels. Today Abbigail is two months shy of being five years old and to an outsider, she appears to be barely two. Three years later, we still call CHEO home and spend more time there than anywhere else. Sadly, today, Abbigail is no closer to being that fearless and healthy sweet girl we saw giggling and running with her big brother so long ago. You could easily say that she is back to where she was three years ago, with the exception now that she has been through far too much over the years and is exhausted and has exhausted so many treatment options that were once full of hope. Today that “hope” that existed back then, even a after the devastating word “Cancer,” has slowly faded. Quite frankly, today Abbigail is in a worse position medically, developmentally and emotionally than she has ever been in her short life.
It isn’t news to most; that we are still devastated that her last chance at controlling her OMS, with the dangerous and experimental stem cell transplant she underwent last fall, may not have worked as we hoped. We are still struggling to manage her symptoms and relapses of OMS with each illness that comes her way. Over the last few days we’ve watched her limp, fall and completely lose control of her motor function in her legs. It is likely caused by the UTI she got again last week, which activated her immune response and allowed the OMS to take over again. Her sleeplessness and exhaustion do not help with her behaviour and cognitive functions, she’s in constant battle, with decreasing moments of contentment with each day that passes. OMS is still very much present, active and destroying our beautiful girl’s livelihood. Today, much like three years ago, we are consumed with fear. Today, the lack of knowledge and information, much as it has been during this entire journey, is paralyzing most days. We’ve searched long and hard for information regarding OMS, it’s prognosis and treatment and we’ve connected and had Abbigail surgically and physically assessed by one of the only world leaders in this disease. Yet, here we are, three years later, no closer to remission and with far less options than we had before. Much the same has been for her Cancer. Almost three years after they resected her tumour completely and told us how rare it is, for a child with OMS and Abbigail’s presentation, to ever relapse with more Cancer of this kind, here we find ourselves.
Today we fear a third possible recurrence.
You may recall that since Christmas Eve, we have been trying to ignore the 9 new lesions within Abbigail’s liver. Since then, she has been biopsied, in two different locations, having resected 5 separate core samples of her lesions. She’s had an MRI and 2 ultrasounds, all which have brought up our worst fears all over again. The recent biopsies have not provided any definitive answers to date. All we have been told is that they are “unsuitable for pathological diagnosis” but that all of the cultures of the samples studied returned no bacterial, fungal or viral growth. Again, we are faced with the uncertainty and fears associated with that unknown factor.
Today, three years after hearing our daughter has cancer, we can’t help but fear hearing those words again. Abbigail is about to undergo one more scan, to see if these liver nodules have changed and what the next steps are.
Three years…our baby girl is almost five! I’m so proud! Please continue to pray for our girl and the far too many other little children and share this so that everyone knows KIDS GET CANCER TOO & CAN’T FIGHT ALONE!