Over the past decade, I have been blessed to be involved with Camp Sunshine, which provides year-round programs for children in Georgia with cancer and their families.  Through this work I have gotten to know some pretty awesome kids, both those with cancer and their siblings.  Kids with cancer are just ordinary kids with many of the same psycho-social, developmental and emotional needs as kids without an illness.

In addition to all of the “typical kid” needs, kids with cancer face some other issues most of their peers do not: the idea of their own mortality, physical disfigurement, side effects of medication, absenteeism from school, immunosuppression which makes large-group activities dangerous, hair loss, lack of control over their lives, etc.

In addition to the individual issues the child with cancer faces, her illness impacts her entire family unit profoundly.

When a child falls gravely ill, everything shifts.  Parents, already caregiving for children, become caregivers to both their well children and their ill child.  The challenges are immense.

Through The Caregiver Series, I will share some perspectives from those impacted by childhood cancer.  Not only because I happen to know a lot of people who work in the field and who have had children who have been ill, but because childhood cancer is the leading disease killer of children.  An average of thirty-six children are diagnosed with a form of cancer each day.  And yet, like my mother and her peers caring for a sick spouse, their in-the-trenches stories may not be heard because, well, they are in the trenches.

Today I begin with Patti Phillips and her family.  Patti’s beautiful daughter Stephanie was diagnosed with Ewing’s sarcoma at the age of twelve.  I won’t share too much of her story, because I think the Phillips family says it all better than I could.

Stephanie passed away in early 2005, and what I love about Patti is that even though her daughter has left this earth physically, Patti remains a caregiver in a sense.  She offers support and comfort to other families experiencing the grief of a lost child.  She makes sure her grandson knows about his Aunt Steph and that her memory lives through him.  She even raised money and shaved her head in honor of her daughter.  She has tended to Stephanie’s legacy and I feel lucky to have borne witness to her loving tenacity.

Here are Patti’s words …

Tell us a little bit about your daughter, Stephanie.  What did she love?

I decided to share this one with Shannon, Paige and Steve.  (Editor’s note – Shannon and Paige are Stephanie’s sisters and Steve is Stephanie’s father.)

Paige: Shopping, softball, being with friends, being with family, dancing, laughing, crafting, camp, animals.

Steve: She loved her family, softball, her car, her Camp Sunshine family, and living each day as if it were her last.  She set an example for us on how to live life, and not to worry about the things we can’t change.

Shannon: Sister Hazel; Ellie her dog; grandma Crawford (calling her and grandma would always answer “what’s up?!”); babies; writing pens and markers (especially the glitter kinds); her red Eclipse; friends – Jenni, Sam, Josh, Mark; camp; being silly with Paige and me; Aunt Donnas for holidays; clothes; makeup; monster cookies; soft cookies w thick icing on top.

Patti: They pretty much summed it up but I think most of all she loved her family.  We would even all go grocery shopping together – one of the girls would distract me while another would fill the cart with goodies.  She used to take our cat Furry, strap her in a doll stroller and push her all over the neighborhood.  She thought the VCR looked like the perfect place to put a peanut butter and jelly sandwich in.  She would pour nuts and bolts all over the carpet to see if the vacuum would suck them up like they did on TV.  When she was about three, she would get up before us open the door and go across the cul-de-sac, walk into the neighbor’s house and sit down for breakfast.  I guess we did not get up early enough for her!

Give us the details surrounding her diagnosis and the course of her illness.

On New Year’s Eve 1998, Stephanie started crying that her leg hurt.  That was so unlike her.  She hardly ever cried.  So the next day, I took her to the urgent care clinic since it was a holiday.  The doctor barely glanced and the bump at the top of her leg, asked if we had a cat, and when we said yes she diagnosed cat scratch fever.  She said, “Take these pills and if it is not better in two weeks go to your doctor.”

Well, it did not get better.  It was getting worse.  Steph was a fast-pitch softball pitcher and her pitching coach urged me to take her back to the doctor.  So, we tried again with our family doctor.  We did end up seeing someone different but he took one look at her leg and said, “This is not cat scratch fever but I don’t know what it is.  We need to run tests.”

The next two weeks were a blur of tests and doctor visits and we ended up at Children’s Healthcare of Atlanta – Egleston on the cancer floor and I knew we were in for a fight.

Stephanie was diagnosed with Ewing’s sarcoma in her left pelvis.  We were given a roadmap of treatment that would last about a year that consisted of chemotherapy, radiation and surgery.  Steph tolerated this year well – she would even leave the hospital from a weeklong chemo stay to join her softball team on the field.  And she was not there to watch she actually played!

She was cancer free for more than a year when the cancer can back in the same original place.

Her surgeon said the bone had to come out, so she did more chemo and then underwent surgery to remove the left side of her pelvis, the hip-joint, and the top of her left femur.  A metal prosthesis was put in place.

This surgery left her unable to ever play softball again – something she had been doing since she was three-years old.  It left her disabled and probably having to use crutches for the rest of her life.  But, she accepted it and never let it get her down.

Then, in the summer of 2004, not long after she graduated from high school, she started having pain in her shoulder and this time her right leg.  The cancer was back for a third time in her leg and lungs.  We did not have many options.  We tried chemo pills but they did not work.

In August 2004, we were told there were no more options.  Her physician, Dr. Olson, told us the tumors would continue to grow in her lungs and she would just go to sleep one day and not wake up.

When Stephanie was sick, you were her primary caregiver.  Can you tell us what that was like for you?  How did you balance work and the demands of a sick child? What helped? What got in your way?

When Steph was first diagnosed, I did not know what to do.  I wanted to keep everything the same so when she was inpatient I would stay at the hospital with her at night and go to work during the day.

If I could go back and change things, I would have never left her side.  But, in a way, I was trying to keep everything as normal as possible because that would mean it would  be all better and she would be fine.  What saved us was her relationship with our Child Life Specialist, Missi Hicks.

What is the one thing you wish more people knew about childhood cancer?

That it exists and it is real.  I wish they knew the facts – how little research is done because childhood cancer is not a money-maker.

That's me with Stephanie at the Camp Sunshine Holiday Party in 2004.

Me with Stephanie at the Camp Sunshine Holiday Party in 2004.

4 Responses to “The Caregiver Series : Facing a Childhood Cancer Diagnosis”

  1. on 01 Jan 2013 at 12:11 amhot Nai Nai

    I have thought all day about these words. It is a beautiful tribute and expresses such love. I wanted to make a comment and thank you for sharing but, my words seemed so insignifigant. All I can say is thank you for sharing. I wish I could have known Stephanie

  2. on 01 Jan 2013 at 1:42 amFamily

    She is thought of every day, as she made this life better, even in her absence.

  3. on 01 Jan 2013 at 11:39 amKristine Rudolph

    “she made this life better, even in her absence.”

    I love that. Thanks for sharing.

  4. […] I have mentioned in a previous post, I am honored to be a volunteer for Camp Sunshine, an Atlanta-based nonprofit that provides […]

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