I hope this is never you. I never thought it would be me. Not in five million years. But here I am, with cancer playing the center stage in my life right now. It's not me, but so much worse ... my five year old daughter, Skyler. Diagnosed with Acute Lymphoblastic Leukemia (ALL), 2 weeks before her 5th birthday. Unthinkable.
In a matter of hours, I went from what some may describe as "a fairy tale life," which included two happy, healthy little girls full of sunshine ... to living a mother's worst nightmare.
Of course there is no way to truly convey how you feel as a parent when you find out this is your reality. And I hope you never have to fully understand. So many questions. So many details that seemed innocuous at the time, suddenly making the slightest bit of sense. Below is an excerpt from my CaringBridge blog that was written shortly after our world began to crumble. Raw emotion, no doubt.
I have had so many people ask me what Skyler's symptoms were and how 2 weeks ago she seemed perfectly happy and healthy and how now we've come to this. The answer is, I don't freaking know, but hindsight is 20/20.
About 7 weeks ago, Skyler started complaining of fleeting leg pain. "Mommy my leg hurts," and then 5 minutes later she'd be running around on it like a crazy person again. Kids are always saying this or that hurts and unless it seems like something really hurts, you just kind of let it go. So for about 2 weeks, I didn't think much of it. Then, I started noticing it was always the same leg so started thinking there was something to it, maybe a pulled muscle? She never limped, she ran all over with her sister and participated in cheerleading - never slowing down for a second. A couple weeks later, the "mommy my leg hurts" started coming more frequently, so I took her to the doctor. They examined her, did x-rays and told me it was a pulled muscle and to give her warm baths and use a heating pad. I was doubtful it was a pulled muscle at this point because it came and went. It wasn't like it hurt all the time, or even most of the time. But, when it did hurt, it was like an intense shock of pain. But hey, the doctor told me to use a heating pad, so that's what I did.
About 2 weeks later, Skyler woke up screaming in the middle of the night. She was in such pain and this went on for hours. The pain had stepped up immensely. We were on our way to Cleveland for Thanksgiving. I gave her Tylenol and she seemed to get better. That whole Thanksgiving break, she needed to be on Tylenol around the clock, or else the pain would be back in full force. She also started limping. I was going to bring her back to the doctor as soon as we got back on Monday, demanding another explanation. I was sure it had something to do with a nerve, the way it would strike with a vengeance and then go away. But when we got back to DC, the pain was gone. Monday through Thursday she didn't need any medicine and didn't mention her leg at all. Then, at about 3:45 am on Friday morning, she woke up screaming in horrendous pain, "mommy make it go away, it hurts so bad I can't breath," and a number of other equally unthinkable statements came out of her 4 year old mouth. I took her to the doctor, COMPLETELY expecting them to say she had a pinched nerve. They did some basic blood tests and the next thing I knew, we were being admitted to the hospital. No real explanation was given, except that her blood counts were extremely low and they needed to figure out what was going on. That they needed to "confirm" that it was nothing serious. No mention of what "something serious" was, but I could clearly read on their faces that something really bad was happening.
So, in complete disbelief I pack up my angel and take the address to the hospital. Keep in mind that we were already at a hospital, as the pediatricians' offices are attached to one. But, they were sending me to a different hospital - "the one that has all the specialists." What??????? What is happening? So, I pack her up in the car, put the address in my GPS and start driving. My husband was in Richmond for work that day - at least 2 hours south. I was on my own for the time being.We get to the hospital and have to check into the ER because they don't have a bed ready for her yet in the main part of the hospital. They immediately make her put a mask on to avoid catching anything. This small act in itself is enough to freak out a child (and me). They thought she was that fragile?? They started an IV, did a bunch of other tests and gave her Morphine, because the pain was so bad. I started to process through my mind what I thought it could be that was affecting her blood. I had said to my husband, "I hope it's not Leukemia," not even knowing what that was, other than a form of cancer that can affect the blood. They told me the hematologist would be down to talk to us. That made sense, since her blood counts were off.
During the next several hours, numerous people came in and out of the room. They all talked to me in a tone that seemed like they knew something was very wrong. Like the evidence was so strong but they just needed to confirm it. But confirm what? What was going on???? Kyle eventually made it to the hospital from Richmond and we waited for hours in the ER to see the doctor. Finally, a team of doctors came down and were introduced to us as "the pediatric oncology team." Oncology......that word resounded in my head - it was seriously like what you see on tv - slow motion and the world stopped. It was at that moment I knew my worst nightmare had come true. They sent the oncology team because they thought my sweet, innocent, baby girl had cancer.
And so it began. The moment no parent should ever have to endure and certainly no innocent child. The moment I hope you never have to experience. The moment I realized I didn't have my life full of sunshine anymore. The end of the "fairy tale." For now, anyway.
This moment began what will be a very long road into a plethora of uncertainties. The kind of uncertainties that cause you to look in the mirror and wonder if you had a second chance, would you have done things differently.