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"

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.


  1. Oh, Potts. There they are. The facts. The wretched, exhausting facts. The nasty, unjust, dreadful facts. You have spat them out. I would like to hold your hand, and together we could stomp on them! Anyone care to join us?

    But that's not the whole story. And I look forward to reading about the rest of this journey. The courage, the brilliance, the love that I have witnessed. And I know there is still more to spit out, to ponder, to howl at.

    We are here with you, dear friend. Can you feel us gathered around?

  2. WOW, Mary. What a girl! She sounds like she was unstoppable, beautiful, mature and a force of nature. I love her way of being so clear about what she wanted, and keeping going towards it. That takes tons of drive and courage, not to mention stamina and vision, particularly under those circumstances.

    Thank you for sharing these details. I didn't know all of this, and it just increases my admiration for Erin even more.

    Yes, it's no wonder you are tired after all of that. Just writing it out would be tiring. I understand that. God bless you and your family.

  3. Mrs. Potts,

    Fighting to find the courage and through the pain to write this blog entry is only one of the MANY reasons why I admire you. I started flipping through my quote book and found one I really liked: "Faith is taking the first step even when you don't see the whole staircase." -MLK, Jr. Stay strong, as always, Mrs. Potts.

    Love always,

  4. Dear Mary,

    Your courage and words CONSTANTLY amaze me. Stay strong and know we are all here for you.


  5. Keep writing! This is an inspiration and I look forward to reading more of your journey. ~All my love and support,
    Stacy Riedel

  6. Mary
    I am so impressed with your writing. I feel like I know Erin, despite never having met her. I work with Sarah and watched her be so strong through your family's ordeal. Now reading all about Erin, I do feel like I know her. You are a wonderful mother and have an amazing family. I am so touched by your story. You truly are an inspiration. God Bless you and keep up the writing. I will continue to keep you and your family in my prayers. Erin is indeed quite an Angel in Heaven.

  7. Dear Mrs. Potts,
    Although Erin and I hung around with different groups in school I always watched from afar at how strong she was. To me she was always that rock, a girl standing strong and with a smile, everyday at school despite everything that was going on, which really gave me hope and inspiration for my own battle with cancer. I honestly don't think that I could have made it through school myself if I didn't see Erin doing the same thing with so much conviction, and I thank her for that every day.

    Much love and prayers to you and your family.

  8. Oh my gosh, I'm so very sorry you are going through this battle too! I apologize, I don't know who you are. ONLY IF YOU WANT TO, please call me anytime. It would be a privilege to speak with you. Stay strong and full of hope.

  9. Dear Mary,
    Just caught up reading the blog entries. Thank you for sharing the medical journey. I loved your thoughts in response to the initial diagnosis. Dog/socks story so sweet. Look forward to the 2nd Annual Erin Potts Invitational as I missed the first. IGNORE any negative comments! As you said,this is your blog.You are truly amazing, Mary.It is very generous of you to share your heart and soul with us. May the peace of Christ be with you and yours. ROCK ON, MARY! Love,Irene O'Ryan-Fox

  10. I just found this web site through a comment you made at Metanoia, which I found through Jen Fulweiler's Conversion Diary.

    I will pray for you and your family as you head toward Christmas. Erin sounds like she was a really tremendous person who was blessed with exactly the right family.