Today, Three Years Ago

On March 21, 2007 a hip/partial femur replacement was performed on Erin as part of the recommended treatment protocol set by the Children's Oncology Group.

When the results of the biopsy came back during the week of diagnosis in December, Dave and I were told this radical surgery, a limb-salvage procedure, was necessary to ensure clean margins; the removal of all tissue affected by disease. At the time of the diagnosis I was distraught and overwhelmed, so all of these words didn't fully sink in. We had heard the word cancer for the first time five days earlier and we were now meeting with the orthopedic surgeon who was talking about his part in the juggling act of oncology specialists who would take part in Erin's "treatment plan".

I know I was still shell-shocked from the barrage of tests, scans and biopsies, and in a frenzy with the highly-dreaded chemo drugs looming on the horizon of the following week, scheduled to begin two days after Christmas. CHRISTMAS, are you kidding me? I think we're all familiar with the expression like a deer in the headlights. In a bizarrely detached way, I nodded my way through those first weeks: Go here for this test - "Ok". Now go for this scan - "Ok". Now we'll surgically implant a port in her chest. Don't worry it's a great thing - "A what?! Ok". She'll start chemo next week - "Ok". Now go to... - "Ok". I think you get the picture.
In order to have any semblance of sanity, I found I needed to compartmentalize information, or my brain exploded. It was too overwhelming for me to process everything at once. Looking back, I know I was in shock for the first few months; barely able to eat, sleep or breathe. (Remember, the house was torn apart too.) I somehow functioned. I'm certain it was simply because I LOVED Erin, and that innate sense propelled me forward. And so, the thoughts of surgery were forced to the back burner as we began to fall into the routine of in-patient chemotherapy and home schooling.

After the first couple of sessions, we began to breathe a collective small sigh of relief as we witnessed Erin's ability to tolerate those drugs, AND she began to feel so much better; the tumor was shrinking, the chemo didn't make her sick, her appetite returned, she gained some weight, her energy was rebounding. In effect, Erin was becoming ERIN again, minus the small detail of her gorgeous long hair, after at first being on a previously-unexplained absence, and then receiving the life-altering cancer diagnosis. She was attending volleyball practices and tournaments to be with her teammates, meeting with teachers, even going to the gym to exercise a bit. She felt really good. Inwardly, I was still in the nuthouse!

In February, we met again with the orthopedic surgeon who confirmed his initial recommendations of this procedure as the best possible chance to completely rid her body of the monster that grew within her leg. At his insistence, we sought opinions from specialists in orthopedic oncology at other institutions and they concurred.

We all logically understood the necessity of this surgery, in combination with the 14 cycles of chemo, and also the 30 fractions of post-surgical radiation to "clean up" any remains of cancer cells in her leg, to give her the highest odds of beating the disease. I use the word logically very emphatically.
The brutality of the procedure itself, what they were actually going to do to MY daughter during this 6-hour procedure, made me physically ill. Surgery is an atrocious assault to the exquisite beauty and integrity of the body.

And then, there was the impact it would have on her life.

From a young age, while watching Sarah work so hard to fulfill her dream and go on to UWM with her scholarship, Erin determined it was her mission to follow in her beloved big sister's footsteps and earn her own scholarship to a Division One school.
Volleyball helped define Erin's life, who she was, the path she was on. Some people play a sport because it's fun, they're athletic, it's good exercise, they love being part of a team... all good reasons. Others, like Erin who also play for the afore-mentioned reasons, take it up a notch or two and it is a PASSION, like writing, acting, or dance is for those select individuals.
No, she wouldn't play volleyball later in life. It would not be her career. Yes, she would get a college degree in whatever field she chose and volleyball would no longer define her life as it did at that time. But at that period in her life, that surgery meant the end of Erin's current life as she knew it. Tough when you're 15, and especially since the reason it has ended is because you have CANCER and you must process that fact as well! That's a bigger plate than most will be forced to eat from their whole life. Hence, the emphasis on logic. Yes, we completely understood the surgery to be a necessity to cure the cancer and that was WHAT MATTERED MOST, but Erin/we had to grieve the loss of her passion as well.

The agony I felt about the life-altering consequences of this surgery, coupled with the brutality and risks of the procedure itself rendered me incapable of speaking about the details to anyone. Only our immediate family knew until a couple of days prior. Saying the words aloud made it too real, too painful. It meant it was really happening. All were told the chemo was shrinking the tumor and the remaining necrotic tissue would be removed during the procedure - truth but no details. I just couldn't go there, and I was incredulous when some expected more information from me.

Erin didn't care to speak much about it either. She openly cried only a couple of times, and then stoically moved forward with an IT IS WHAT IT IS! understanding that astounds me to this day as I type these words. I know it affected her on a very personal level that she didn't allow herself to vocalize very often, preferring instead to process it privately. In many ways, she accepted nearly everything so much better than I did because she knew she had no control.

The day before her surgery she played football with Chris in the street in front of the house. This was a common game for them and Chris, awesome big brother and football coach extraordinaire, had her running pass routes - chairs, slants, outs, digs - for those of you who know receiver lingo, and yelling to her, as she caught with skilled hands, "If only you were a boy!!!"
She'd banter in response, "If only you could throw like one!"

Riveted to the sight that day, with tears streaming down my face, I knew it was the last time I'd ever see her RUN and JUMP, unencumbered by the effects of surgery. (After she recovered, they often played together in the street. She jogged slowly and hopped up off her left leg to catch a pass. Two days before she died, they threw a ball across the living room together.) I soaked in every bit of it from the upstairs window and resisted the urge run out and take photos of them because I didn't want to land in a heap of blubbering emotion in front of her. It would have been received with fierce eye-rolling on Erin's part! Moments such as those can never be captured accurately in still-photography anyway. You must simply be present with them. The image is etched in my mind forever.

One of my favorite sympathy cards, from a former neighbor, stated, "I will always remember a beautiful, healthy, athletic girl playing in the street - and doing better than the boys." Oh, how Erin would have LOVED that compliment.

The surgery went smoothly. I was frantic during the six-hour procedure. Her first words afterward in recovery were, Hi mom. See, I told you he'd do a good job. She was in ICU for one night as a matter of routine, and home three days after that enjoying steaks from the grill in celebration. She was on crutches for three months to ensure the muscles adhered to the implanted rod, and after that three-month period she began intense physical therapy several times a week, that continued for months. Throughout that time, she completed the remainder of the chemo cycles, had radiation, finished her sophomore year, coached, got her driver's license and began her junior year of high school, along with many other things - living her new normal.

Life came to a screeching halt again three months after the end of that protocol when she relapsed in March of 2008. It seemed so unbelievably cruel. STILL DOES! In spite of doing everything right, in spite of the sacrifice of her life's passion, the cancer came back.