Truly Inspiring: Heather’s Story

Where do I start???

I remember a little boy in my church when I was a teenager who passed away from leukemia – his name was always in the church bulletin on the prayer list. I knew another boy I grew up with in school who was diagnosed at age 16 in the 11th grade. I never dreamed that one day my child would be going through brain surgery, chemo, radiation, counts, chicken pox in the middle of treatment, cataracts, hundreds of MRI’s over the years, a Make-a-Wish trip, seizures, pills, needle sticks over and over and over, and would lose that gorgeous head of thick, dark, long wavy hair that I never would cut…and never grew back the way it was before.

Heather was always in a hurry, running everywhere she went, always bumping into things, tripping and stumbling, and falling down quite a bit too. She always had bruises on her shins and knees. I would tell her “honey slow down, watch where you’re going….” I remember she spent the weekend with my parents and my Mother noticed her right hand would tremble when she picked up a glass of juice, and she switched it to her left hand, and her hand was steady. My Mom told me about it, but my Mother worries about everything and everybody…especially her only Grand-child (at the time). I passed it off.

Two weeks later, I picked her up from daycare and she told me she needed to go to the doctor. That sent up a red flag – she had never told me she wanted to go to a doctor. I asked why, she told me her head hurt. I took her to Pediatrics After Hours. The doctor on call did a few neurological tests. Then she looked into her eyes with a light and I noticed her face and her whole expression changed. She told me to see her pediatrician the next day. I read later that a tumor on the brain could make the optic nerve swell. I think she had an idea then what the problem was.

We saw her pediatrician the next day. He ordered a MRI that afternoon and we were in the hospital that night. Heather’s life and our family’s life had turned on a dime. Looking back, after 19 years now, it still seems sooo surreal. March 31, 1993. I’ll never forget that day. It seems like a whole lifetime ago, but at the same time I remember every detail like it was yesterday afternoon. Dr. Joe Sam Robinson, her neurosurgeon, told us that night we were about to get on a rollercoaster ride and we had better hold on. He told us up front, she probably will not make it through surgery. If she does, most parents end up divorcing because of the stress. Oh my God…he’s telling me my child might die tomorrow, if she doesn’t, I will probably get a divorce. Just last weekend she was on her swing set. She fell off that too, by-the-way. Now my baby has a brain tumor and my family is going to fall apart. I jumped on that rollercoaster. I have not let go yet. I’m still holding on tight.

Diagnosis…Primative Neuroectodermal Tumor or PNET for short. Highly malignant, aggressive, 4 inches in diameter, rare with a 30% survival rate past 2 years are the words I remember.

She was five years old and my only child. My pride, my joy, my whole world revolved around my “Squeaky”. I had stopped going to church for years – I didn’t even know how to begin to pray for my child. The night before her surgery I went into the chapel at the hospital. All I could whisper was “God, you know what’s in my heart”. I felt an immediate peace, and I knew at that moment God was in control.

There have been times when I was angry at God…WHY my child, what did she ever do to deserve this life? School issues, social issues. But now, more times than not, I say why not my child? She is The STRONGEST person I have ever known, and will ever know in my lifetime. I have learned from her the meaning of humility, strength, gratitude, guts. I realize that God gave ME a gift with Heather’s brain cancer. What did I do to deserve this precious, thoughtful, loving child who struggles every day but has never once felt sorry for herself?

For many, many years I stuffed this part of our lives down deep in a dark place, a painful part of our past that I tried to forget about. But, childhood cancer IS our past, our present…and our future. It’s who Heather is; it’s who her Mother is. I am finally able to share her story, after all these years.

Every night in Atlanta after she went to bed, I would sit outside, chain smoke, drink Diet Cokes, pray and cry. Just me and God. Some nights I’d be thankful, some nights angry. Some nights, I couldn’t say anything at all. He has brought us through the scary, fiery, pits of hell and walked beside us every step. He is still with us.

It’s been 19 years now. She is now 24 years old. She has a simple, childlike innocence about her. But on the other hand, she has endured so much more than anyone should ever have to bear. All of her doctors gave us terrible odds. I now know that Heather is God’s child. He entrusted her to me, to teach me. I still ask him why, but with a different tone now. What did I do to deserve HER? I love my title…”Cancer Mom”. What an honor, what a blessing!

The one thing that hurts my soul is that not all children are healed here on earth. My heart breaks for their families. I find it hard to look them in the eye at times. I want to be certain that I’m doing everything I can to be worthy, to still be able to hold my child’s hand, to kiss her cheek, to hug her tight…and to be annoyed with her at times too.  Thank you, Jesus. I’ve been so blessed.

Heather’s Mom…

Cindy Arnold

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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One Response to Truly Inspiring: Heather’s Story

  1. Stacey Nixon says:

    Cindy,
    Just wanted to tell you that hearing your families story is a wonderful thing. I know God has blessed you and your family with Heather. She is the heart of all who suffer with this type of cancer. Hold your head high MOM, you have trusted in God and he continues to bring you all through this. Heather is a beautiful young lady and I know has a heart for her parents that not everyone can have in these days. May God hold you and keep you all strong with each day….
    Stacey

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