“We hear all the time that St. Jude has brought the childhood cancer survival rate to 80 percent, which is great. But when your daughter is the other 20 percent, then that percentage is no longer acceptable.”
Those are the words Paula Head shared with an audience three years ago at the pasta party for St. Jude Heroes, during the annual St. Jude Memphis Marathon Weekend. Her daughter, Carson, was in the 20 percent; she passed away four years ago after a 16-month cancer fight.
Today, Paula works to keep Carson’s legacy alive, and she’s helping countless other families do the same through a new Patient Family Fundraising program she’s developing for ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. Find out more about this incredibly strong woman who speaks candidly about her beautiful daughter, who was also incredibly strong. In recognition of Childhood Cancer Awareness Month — and in honor of Carson and all who have faced childhood cancer — it is our distinct honor to introduce you to this very special FACE of Memphis, Paula Head.
Tell us about Carson.
She was beautiful. Bright blue eyes. Spunky. Witty. Funny. She would tell it like it is — she didn’t hold anything back. She loved life and the outdoors. We did a lot of tent camping and hiking … things like that. She loved all things outdoors.
When and how did you discover she had cancer?
It was the day before her 8th birthday, and we were getting ready to leave for spring break the next day. Carson had been to the doctor about two weeks prior with knee pain. The doctor said, “Just do Motrin, and it’ll be fine.” I had been out of town on business, and my husband said, “She is still really complaining about her knee, and I think it’s swollen.” I took her back to the doctor and he did another x-ray. He called me while we were at Target getting a few last-minute things for our trip, and he said, “I see something on the x-ray. I need you to take her to get an MRI.” I asked him what he saw, and he said that it was either a tumor or a massive infection.
Carson was diagnosed with osteosarcoma and was admitted to St. Jude Children’s Research Hospital.
Cancer is often described as a roller coaster ride. Is that an accurate description?
There’s no doubt. You say roller coaster and you think up and down. But with cancer, you have the jerking to the left that you didn’t expect and then the jerking to the right. It’s like we’re going up this hill and battle this, and then it’s downhill and boom — we’ve had a scan, and it’s worse and we’re having surgery today. And then you jerk to the left — the biopsy didn’t come back good — it’s spread. Now we’ve jerked to the right, and we’re going to change chemo and do something different. It’s very much a roller coaster ride.
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You all are a very faithful family. Was there a specific moment you recall being extremely aware of God’s presence?
I had a dear friend at church who sent me a bible verse early on, and I keep it all the time. It’s from 2 Corinthians 12:9, and it says, “Therefore I will all the more gladly glory in my weaknesses and infirmities, and then the strength and power of Christ may rest, yes, may pitch a tent over and dwell upon me.”
I mentioned earlier that we camped a lot. I read that verse to Carson, and from that version, she understood exactly what it meant for Christ to pitch a tent over her. So we always talked about being zipped up tight in the tent.
One day, when she was inpatient getting chemo, she was not herself. She carried this Little Mermaid blanket everywhere and she would cover her head up. If someone wanted to access her port, she would move the blanket over just enough, but she wasn’t talking to anybody. It was late afternoon, and she had her head covered up and had not been out from under that cover. Ever so quietly I saw her hand reach out, and she motioned with her finger to come here. I got under the blanket with her. I said, “What are you doing under here?” She put her finger up to her lips and said, “Shhh! I want to know if you want to come in my tent because I’m zipped up tight. It’s been me and Jesus all day. Do you want to come in?” I said, “I would love to come in.” She was in the bed, and I sat under that blanket with her. We said not a word. I was on my knees, and we sat there till I couldn’t feel my knees anymore.
About two weeks after that, Child Life had given her a big canvas. This particular day, she was going home, and she said she wanted to paint it at home. So they gave her paints, and she took it home. She was sitting at the kitchen table, and when she was finished, she said, “Come see what I painted.” It was a big, orange tent and it had a shooting star over the top. She said, “Do you like it?” I said, “I love it!” She said, “What do you think is special about it?” I said, “I love the shooting star.” She asked, “Do you see anything else special about it?” I said, “I see the tent, and it’s zipped up tight.” She got excited! She had camped enough to know that when your tent is zipped up, the pull is at the bottom. And she had drawn that zipper, and at the bottom, she had put a big, purple handle. She said, “This is my tent with Jesus and it’s zipped up tight.”
What was the most meaningful/helpful way in which people supported your family during Carson’s illness?
The best thing is don’t ask someone, “What can I do to help you?” Just think about what you do in everyday life. The perfect example is that every two weeks, toiletries showed up at the back door. Laundry detergent and toilet paper and Clorox wipes — everything you buy at Target every time you go. Don’t ask. You just have to do it.
When you think back on her 16-month illness, were there any special times or places that brought comfort?
She really opened up when the lights went out. Her voice would get quiet and she’d always want to hold my hand. That’s when she would ask the questions she was scared to ask in the light. I can remember one night she said, “Mommy, what do you think is the greatest thing about heaven?” I said, “Well the bible talks about the streets of gold; angels will be singing — I think it’s going to be more beautiful than we can imagine.”
I could tell she was really thinking about it. She said, “Yeah, but that’s not the greatest thing.” I said, “Well what do you think is the greatest thing?” She said, “Because I’m going to be waiting on you. I’ll be there.” It wasn’t about the streets of gold — it was about all our family is going to be together.
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What was the most surprising thing about grieving the loss of Carson?
The small things that send you over the edge. You think you’re fine and then a song comes on. Or for my husband, it’s the scent of a certain candle. That was the very last shopping trip he went on with Carson — to buy me a candle. The last one she picked out was really woodsy, and if I light one that smells like that, the tears are gonna start.
Grief changes from year to year. You’re out of the dark tunnel of “I’ve lost my child” that first year. That second year, reality hits that she’s really not coming back and it starts to get quiet — people stop talking about her because they’re afraid it will upset you. And then by three and four years, it’s like Is anyone gonna remember her?
How do you ensure people will remember her?
We do Team Carson Elizabeth for the marathon. She so believed in raising money for St. Jude. She would ask everyone at St. Jude if they had any change, and if you said no, she wanted you to prove it. She’d come home and put it in her piggy bank.
About a week before she passed away, she asked her daddy and me to lay with her and to bring her piggy bank. She said, “I want you both to promise me that when I’m gone you’re going to give all my money in this bank to St. Jude.” She kept saying, “You promise! Because it’s going to be my money that makes a difference.”
After she passed away — as a family, we all counted her money. It was $128.56 that we donated out of her piggy bank. When I look at that, I say, “A 9-year-old believed that her $128.56 was going to make a difference to end childhood cancer.” I think that is such a lesson for us as adults. We think, What is my $128 donation going to do? I don’t have a million dollars to give. But if we all had the faith of a child that $128.56 is going to make a difference, how much better would it be?
What is the best advice you’ve received?
Early on, a friend said to my husband, “ People want to help … some are going to have financial resources and some are going to have human resources. You are going to have to learn how to smile and say thank you.”
We had been taught our entire life how to say thank you; that was the easy part, but the acceptance part was hard, and we had to learn that. We had to learn to be humble and accept the fact that we couldn’t do this on our own. My husband and I leaned into our faith and learned to accept other people’s gifts of money, food, and prayer with humility.
Aside from faith, family and friends, what are three things you can’t live without?
Love, purpose and hope. After losing a child … without love, purpose or hope, how could I get out of bed every day? You have to have a purpose — a reason to get up. My family and I — we choose to put one foot in front of the other each day. Our purpose is now to live life to the fullest and let everyone who will listen hear Carson’s story and how St. Jude has impacted us. So that’s our purpose. With that love and purpose comes the hope that one day childhood cancer isn’t in our vocabulary anymore — that we have cures that are so needed and so overdue for what these kids endure.
To learn more about the St. Jude Walk/Run taking place Saturday, September 28, at the St. Jude Campus, click HERE.
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