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"Mom, it isn't just me, it's other kids too," Alecia told me as I sat on the couch feeling that now familiar pang of helplessness, tears streaming down my face. I had just told her how sorry I was and how unfair it was that she had to go through all of this...and my first reaction to her statement, "she is so much stronger than I am."
From the moment Alecia and I landed at Primary Children's in February, the day she was diagnosed with Acute Lymphoblastic Leukemia (ALL), she had made me promise I wouldn't cry anymore. I had cried almost non-stop the entire day and my tears frightened her and I understood it, she needed me to be strong. Not to say that I could make that promise and never shed a tear but I promised her I wouldn't cry in front of her and I saved my tears for moments alone in places she couldn't see me break down.
But not that day. That day, almost three months into treatment, we had been waiting for the hospital to call with blood results. Alecia's next hospital visit was "count dependent," meaning her blood cell counts had to be at a certain level in order for her to recieve treatment. She didn't make counts and we had to get her to Utah for a blood transfusion, the second that month. Other than the drive to the hospital, we were warned not to take her out of the house because of her extreme high risk for infection.
I didn't cry because she didn't make counts, I cried because it seemed that almost everyday was a constant reminder that cancer is a horrible, unpredictable, and formidable enemy that creates waves of fear that continually make me feel weak and helpless. Moms and dads fix boo boos and make the bad stuff go away but sometimes it doesn't matter how much you love your child, you can't fix it, can't make the pain go away. This is unacceptable to me as a mother and nearly impossible to come to terms with and sometimes, it all comes crashing down and there is nothing I can do but cry...even though I promised my little girl that I wouldn't.
Alecia had just begun to heal from the last round of purple bruises that covered her body because her platelet counts had dropped to almost nothing. Her blood counts were too low for chemo and all that morning, all I could see was how fragile and small she looked because of all of the drugs that had been injected into her body. Once a week Alecia had been going to the hospital for a lumbar puncture to check her spinal fluid and for chemo to be injected into her spine. Once a week Alecia's port-a-cath, (a nickel-sized device surgically implanted in her chest with a tube going into the main artery into her heart) had to be accessed so that she could recieve chemo injections. She has had to have PEG shots which entail chemo injections into the muscles in her legs. Different drugs...different side effects...a lot of pain.
Alecia's most visible side effect was her hair loss. I was so afraid of how Alecia would handle it when her hair fell out. My husband and I talked about it often with her from the very beginning, not to frighten her but to prepare her and to let her know that she would still be beautiful even without hair. We went hat shopping and found headbands with big, bright flowers so that when the time came, she would still feel like a little girl. As I said, a parent feels helpless and there are very few things you can do to take the pain away but to help with the emotional pain I was so worried would come with the hair loss, I told Alecia that as soon as her hair fell out, I would shave mine off too. One of the most memorable and positive days of her illness was the day we had our "head shaving party." Alecia didn't want to watch her hair fall out in clumps so when it started to come out, she decided it was time and mom, dad, and Alecia all shaved our heads together. I have been told that it was a brave thing on my part to do this but in my eyes...it was a very little thing...the very least I could do for my little girl to help her feel less alone in her fight.
Fighting cancer is not easy and it hurts to know that pain must be inflicted on her in order to fight the leukemia. It takes faith in the treatment program and the doctors and strength to be strong even when you want to fall apart. It's ok to cry, to grieve, to get angry, and to scream that it's unfair... just as long as you pick yourself up and keep going because your little one is counting on you..and your strength will be her strength.
