When you are sorrowful look again in your heart,
and you shall see that in truth you are weeping for that which has been your delight.

~ Kahlil Gibran, from"The Prophet"

Saturday, February 27, 2010

Erin Potts Invitational

On the weekend of February 6/7, St. Cletus School hosted the First Annual Erin Potts Invitational Volleyball Tournament.

Over $10,000! was raised and donated to the Sarcoma Alliance in Erin's name.

Approximately 175 junior high athletes, including the St. Cletus 7th and 8th grade teams, and girls from four other Suburban Parochial League schools competed in the two-day tournament.

There was a split-the-pot, a concession stand stocked with donated food, beverages & home baked goodies, and sportswear contributed for auction from local high schools.
A serve-a-thon had been held prior to the event.

Erin's spirit and light shone brightly as athletes, spectators and volunteers sported the custom-made lime green T-shirts.
Her favorite color!

Those of you who are members of the school community most likely received our letter of gratitude copied below. If you were unable to attend the event, or are from out of town, please look at the photographs above and click on the link HERE to read this fine article published in The Catholic New World.

Close your eyes and try to envision the experience. It was truly magnificent!
Erin loved volleyball. She was hooked when she first toddled onto the gym floor and picked up a ball, began playing competitively at the age of nine, and never looked back. She played with athleticism, passion, purpose and utter joy each time she set foot on the court, loving the feeling of being part of a TEAM while staring down her opponent on the opposite side of the net.

Little did we know those qualities would fuel her as she stared down her biggest competitor - cancer. And stare down that rival she did, never letting it get the upper hand in her mind or in her heart. Erin moved on, the victor.

We were honored and humbled this past weekend as we witnessed the generosity of volunteers, donors, spectators, coaches and athletes. There were so many individuals involved, making it incredibly challenging to thank each of you, the TEAM now behind Erin supporting her memory. I was reminded of the African proverb, "It takes a village to raise a child". This village, the able hands of this community working side by side to host and partake in this event, accomplished a multitude. Funds were raised through the generosity of donors that will support the research to better understand and fight sarcomas. Young athletes played volleyball with enthusiasm, in recognition of a girl most had never even met. And all who entered bestowed the gift of time upon our family; time typically absorbed by hectic schedules, time chosen instead to be spent, present in the St. Cletus gym celebrating Erin’s love for volleyball.

Thank you for this most fitting tribute.

The Potts Family
Mary, Dave, Chris, Sarah and Matt

There's been some talk about alumni games as part of the tournament next year. Yikes! I've started training already!

A very special thank you to Sue, Tina, Katie and Angela for imagining this event and then bringing it to life.

Blessings are abundant in our little community.

Thursday, February 25, 2010

A Coincidence?

After hip replacement surgery, patients are limited by certain precautions to ensure the stability of the joint. One no-no is bending more than 90 degrees at the waist. Erin couldn't put her own sock on her right foot. No problem! Each morning before school, as she took her shower, her buddy Keenan patiently waited outside the bathroom door. After she dressed, she chose her pair of socks for the day and handed them to him. He then followed her down the stairs, proudly trotting behind, with tail (actually whole backside for those of you who know Keenan) wagging, and brought them to me. Goldens LOVE to be helpful and carry things! I would then take those slightly damp socks from his mouth and put the right one on her foot for her.
This little ritual became a very special part of each morning.

One particularly difficult day a couple of weeks ago, with memories of Erin consuming me, I sat curled up in my favorite chair, crying, just staring out the window. All of a sudden, Keenan came dashing down the stairs and ran up to me with a pair of Erin's socks in his mouth. Looking at him through tears of disbelief I said, "Oh Puppy! Where did you get these?" Her bedroom is as it was before she died. It will most likely stay that way for a long time. All of her clothes are in her closet and dresser, the socks in a closed drawer.

After looking more closely at the socks, I realized they were an old pair she had long ago donated to the Goodwill bag that resides in the deep recesses of Dave's and my closet - that part of the closet one chooses to ignore, sometimes for years! I went upstairs, with said-dog following closely behind, and discovered that sure enough, he had nosed his way into that previously ignored bag and had carefully chosen that pair of socks over other gently-used items; three pairs of shoes, sweaters (most likely from 1987), jeans that will probably be back in style soon, a couple pairs of gloves, a purse I thought was very cool until Erin gave me the "mom, really?" eye roll...
That bag had been in the back of the closet for months. How did Keenan know to go into it at that moment and get those socks?

If you've ever buried your pathetic, weeping face in the neck of a golden, you know their manes are more absorbent than the most expensive brand of tissue.
The pair of socks still sits in the corner of my chair.
Coincidence? I think not!

Tuesday, February 23, 2010

A Little History, A Lot of Words

At the age of 15, after experiencing mysterious symptoms for a couple of months that were misdiagnosed by several medical professionals, Erin was finally correctly diagnosed with Ewing's Sarcoma at Loyola Medical Center. To this day, the impact of the baseball bat to the stomach as I remember the words spoken by the oncologist, is so vividly clear - preliminary findings indicate the presence of a malignant sarcoma high in her right femur...we'll have to run more tests to determine the exact classification. EXCUSE ME?
No really, she has patellar tendonitis because she plays volleyball eleven months of the year. Her quad muscle has atrophied because she is favoring her right leg due to the tendonitis. She doesn't even have pain at the site of this so-called malignant sarcoma. What in God's name is a sarcoma? The pain is below her right knee, not high up in her right thigh! She has been working very hard with a physical therapist. And she has lost weight because we have no kitchen. You see we're remodeling, so the refrigerator, with very little food in it, is in the living room, along with one cabinet containing some cereal and maybe three cans of soup. The house is a little messy. We've all been very busy. She just needs an antibiotic!

The following week's scans, bloodwork, biopsies and bone marrow aspiration (it's not like on Grey's Anatomy - trust me, I watched them do it) determined that it was, in fact, Ewing's. The tests showed the tumor was localized to the femur with no metastatic lesions present. This was good news. On December 27, 2006 (Merry Christmas Potts Family) Erin was admitted to the hospital to begin cycle one of a 14-cycle protocol of aggressive inpatient chemotherapy that would span ten months. After the fourth cycle, in March of 2007, the orthopedic surgeon performed limb-salvage surgery.
I had to hear the word amputation as an alternative to limb-salvage in order to begin to get used to the term. OK, I like "limb-salvage"! But, this surgery, a hip and partial femur replacement, had a HUGE life-altering consequence for Erin. She could no longer participate in any sports involving impact to her leg. Translation - NO MORE VOLLEYBALL! (Much more on this later.) In June of 2007, after finishing her sophomore year of school, she received 30 fractions (blasts) of radiation to her leg, to clean up after the operation, just in case the surgeon had missed anything as he carefully peeled necrotic tissue (dead cancer cells) away from the femoral artery. We don't want to nick that artery. She could lose her leg! Oh, dear God please help! When this protocol ended in October of 2007, scans showed no evidence of disease. SUCCESS! While Erin had been going about her new life, with teachers coming to the house for the remainder of her sophomore year so she could finish it with her peers, while attending volleyball tournaments now on the bench supporting her teammates, while getting her driver's license through a private agency over the summer in between hospital stays, going through PT for her leg, beginning junior year of high school... all those potent chemotherapy drugs had been swimming through her system, ensuring the DEATH of any stray cancer cells. Ding dong, the beast is dead! SHE'S CURED!

Oh God, NO! Apparently there was another plan. In February of 2008 the baseball bat swung with ferocity again, when at Erin's 3-month check-up, scans showed the presence of a tumor in her right lung, and her bone scan lit up showing four lesions. So much for potent chemotherapy drugs! Remember those strong drugs with all the side effects, including possible damage to her heart and kidneys? Yes, those! Apparently they couldn't dominate Erin's cancer. Surgeons removed the lower lobe of her lung and she began another protocol of chemotherapy, this time a 12-cycle outpatient (thank goodness) program, consisting of infusions of another cocktail of potent drugs, 5 days a week, every third week. She was schooled at home, again, for most of the remainder of that year as she recovered from surgery and experienced some unpleasant side-effects from the new chemo drugs. She finished her junior year of high school on time.

Her body became accustomed to the drugs over that summer, so that as she began her senior year of high school with several cycles left,
she was able to attend school full-time and head to the hospital for treatment each day after classes: Go to the hospital, get hooked up to IV drugs, do homework, have a snack, watch Cubs win (oh well, that year they did) on TV, chat with nurses, get unhooked three hours later, go home for dinner, go out after dinner, go to bed, get up next day and repeat... By this time, when most girls her age were concerned about how their hair looked, she had become a pro at integrating cancer life with normalcy. I don't think most people even knew she was undergoing treatment.

When this protocol ended in November of 2008, scans showed there was no new growth, and the existing lesions were stable. STABLE became another very good word. The physicians put her on a less-aggressive level of chemo, giving her poor body a break from the harsher drugs while hoping to keep the cancer quiet.
After three months, scans showed this wasn't the case. That weak stuff didn't stand a chance against this beast.

At this point, in April of 2009, we switched hospitals and Erin began treatment at the University of Chicago. She started yet another protocol that she was able to have administered at home after school, enabling her to stay engaged in the normal aspects of life as much as possible: Attend school all day, come home and have a snack & some chemo (Nice combo! Most kids have a burger & fries!), dash out afterwards to the boys volleyball games. Hang out with friends on the weekends. Graduate on time while on the honor roll. Attend senior prom. See the new Harry Potter movie...
It was really only a mild inconvenience to have to push bags of chemo drugs aside in the fridge to get the bottle of milk for the cereal in the morning. Whatever! SHE FELT GREAT! During the summer, she sometimes drove herself down to the U of C for radiation to a bone lesion or two while I was at work. I'm FINE mom! Again, whatever!

Well, fine became NOT FINE in a heartbeat in mid-August of 2009, just 1 and 1/2 weeks before she was to begin college. Dave and I rushed her to the hospital as she suddenly experienced severe pain in her side. Scans showed the presence of more tumors in her lungs, and new lesions were crawling through areas of bone. An inpatient protocol of industrial-strength chemo was prescribed, and with the encouragement of her FABULOUS oncologist, she moved into the dorm and started college. She loved attending classes and meeting new friends.
Her body was only able to tolerate three cycles of this chemo, and the cancer was having its way in spite of it. She withdrew from school near the end of October. A brain tumor, which initially presented with symptoms the day we headed down to ISU to watch LT in the state volleyball final, was removed just one week before Thanksgiving.

She was home three days after the surgery, and together our family experienced a most-special, HAPPY THANKSGIVING.

Have some beer Erin! Mom, why does the youngest get to do everything? We paved the way for her!

The next day, the world shifted on its axis with irrevocable consequences. While out shopping with Dave and me, Erin experienced a sudden bleed into her brain that ended the ability for her to move her left side from the shoulder down. She was in the hospital for one week, and we had her home with us for two weeks until she passed away with all of us around her on December 18, 2009, finally at PEACE.

As I read and reread this post while editing, it affirms the indescribable exhaustion I'm now experiencing. This was a LONG entry for all of you to read if you chose to do so, but it wasn't our style to talk much about things over the three years because Erin wanted to LIVE, without explanations. I offer it to you now, to share and inform. Thank you for caring.

Monday, February 22, 2010

It Was Snowing Last Night, So I Pushed "Send"!

After hemming and hawing about whether or not to jump with both feet, I looked out the window last night, and there it was. It was snowing, hard!

This wooden snowflake hangs from the pine bough that reaches over the earth where Erin now rests. Peace to all of you.

Begin doing what you want to do now.
We are not living in eternity.
We have only this moment,
sparkling like a star in our hand--melting like a snowflake.
Let us use it before it is too late.

-Marie Beynon Ray

Saturday, February 20, 2010

One Must Begin Somewhere

I've been encouraged by many supportive friends to write, and so I'm jumping in with both feet, hoping to land on them. I intend to use this blog as an avenue of reflection as the dust of a three-year battle settles, and then learn to take the necessary steps to move forward from here. Erin was diagnosed with cancer on December 15, 2006. CANCER! Ewing's Sarcoma. She died on December 18, 2009. DIED!

Now, images of the past several years appear in my head, as though someone is relentlessly pushing the Scene Selection option on a DVD. Make it STOP! I'm trying to slow that down, select a scene, play & process, and then move on to another. Sometimes my writing will be a sharing of all things positive, good things happening now, examples of Erin's light shining as our family survives this blow and begins walking baby steps into a future absurdly skewed from where we expected to be headed. And there will be memories of joyful events from those three years, for there are many. Other times my words will be harsh, cathartic, purging...a puking of my grief as it takes me out at the knees.

Author, psychologist Florida Scott-Maxwell states
Life does not accommodate you. It shatters you.
It is meant to and it couldn't do it better.
Every seed destroys its container or else there would be no fruition.

The beautiful, symbiotic relationship I developed with my youngest child has ended. As I repeat to myself over and over, SHE'S NOT COMING BACK, our relationship now assumes a much different form; one no mother should be forced to comprehend, to build. There is no manual.

And so I attempt to find the ground...