Living a Life in 10 Week Increments

Written by Melanie Miller, mommy of Emily Erin Fights like a Girl

Emily is our first born, a very sweet and quiet 8 1/2 year old.  We also have a 6 year old girl named Sadie and Reid our 19 month old ball of energy.  Emily has Autism and is mostly nonverbal, which presents with multiple challenges of it’s own.  On June 17th 2012 Emily started having high fevers and fatigue that lasted about a week.  After a visit to her pediatrician and a few tests she was diagnosed with Mononucleosis. On a Thursday afternoon just about 2-3 weeks later, Emily’s fevers returned and she had what appeared to be a bruise on her right eyelid, so we setup an appointment for the following day.  Later that same day we called our pediatrician because she woke up from a nap and had difficulty bearing any weight on her left leg and was whining a lot.  His advice was to go straight to the ER.

After a long night of tests, the doctors were unable to determine what was really going on so they admitted her.  She was followed by several doctors and several more tests were done. On Monday morning she had a bone marrow biopsy of the left hip, and it was discovered that there were malignant cells in the bone marrow. At first it appeared to be Leukemia, which we were told had a survival rate of 98% and the treatment was done on an outpatient basis, she could even still attend school.  Just 3 hours later the doctor returned to tell us that something wasn’t quite right about how the bone marrow looked and it led him to believe it could be something a lot more serious.  We had just wiped away the tears at the thought of Leukemia, and now he was saying it could be a lot worse.  Again after a few more tests that included a full body scan we were given the diagnosis of Stage IV Neuroblastoma, a treatment plan that spanned well over a year and a half and a survival rate of only 40%.  Our stomachs dropped and we just stared at each other in stunned silence.  How could our daughter be filled with a life threatening cancer and show no signs or symptoms until a couple of weeks ago? We were told that Emily had a large tumor on the adrenal gland that sits atop her kidney and metastases to the bone marrow from her skull all the way down to her legs. She also had a tumor emerging from the orbital bone of the right eye. The image of the MIBG scan is still burned into my brain, it was lit up like a Christmas tree, I remember running out of the room.

The initial diagnosis and subsequent treatment plan was pretty rough; 6 rounds of chemotherapy that required one full week inpatient stay each time, major abdominal surgery to resect the tumor, a stem cell transplant that put us in isolation for almost 4 weeks, a full month of daily radiation, 5 week long rounds of painful antibody therapy and numerous other hospital visits to deal with the multiple side effects from the toxic treatments.  And that was just the first year and change, the relapse was a whole different and painful journey.  I won’t go into a lot of detail, but I will say that when she relapsed, just 16 months after being declared cancer free, it was terribly aggressive and our options were extremely limited.  I spent days researching treatment options, talking to everyone I knew in the pediatric cancer world, and the results were very thin.  Almost immediately we contacted CHOP in Philadelphia, Sloan Kettering in NYC, and CHOA in Atlanta.  With limited options we started radiation right away here at Levine Cancer Institute, to stop the tumor from putting pressure on her right eye, combined with chemo while we waited for answers.  Unfortunately there were almost no clinical trials that she qualified for and no standard of care, so we came back to Charlotte to start chemotherapy.  The side effects from the treatment were incredibly toxic and Emily went quickly from being healthy and robust to thin, grey, and too weak to leave her room for days at a time.  The transformation was shocking and terrifying.  Realizing the treatment was too intense and not seeing the tumors shrink as much as we were hoping, we shifted gears and went to Sloan Kettering in NY.  There we tried a couple of different options and after about 16 months of treatment got her back to remission status.  Fearing another relapse we enrolled in 1 of only 2 options available to help prevent relapse, a clinical trial which has required over a dozen trips to NY within the last year, which is no small feat when you have 2 kids under 5 at home.  But I can now breathe a small sigh of relief to say we have been in remission for almost 10 months, with the last treatment scheduled for May.

We were introduced to the Isabella Santos Foundation in December 2012 when Erin and friends were delivering toys to the hospital right before Christmas. I remember not wanting to leave Emily, as she was in isolation post stem cell transplant, but our nurse told me a little bit about ISF and how Erin had just lost her daughter in June of that year, just 3 weeks before Emily was initially diagnosed. I remember telling Tim, my husband, how she must have remarkable strength to be able to come into the hospital and be here to support all these families just 6 short months after losing her daughter. The following September when Emily had just entered remission we attended the race for the first time and every year since we have tried to be as involved as possible. Anytime I have a question about treatment, advice or just need a shoulder, Erin and the wonderful women of the foundation are always there for me and my family.  Knowing that every dollar we raise could lead to a clinical trial that Emily or our local friends could benefit from, fuels our drive to raise as much as possible.

Do I think that they expect to cure cancer this week? This month?  I don’t think so, but if a trial they fund saves just one child, or gives another child an additional couple of years, then it’s all worth it.  My daughter may only have a measly 5% chance of long term survival, but those statistics change every day, and the next clinical trial that ISF helps fund could be the one that saves my child or one of my friend’s children that I have met along our journey.

Now I don’t want you to think I don’t deeply understand the reality of my situation, trust me I do.  I have been skeptical and negative since the day she was diagnosed.  I was the one in my family who didn’t have much hope we could beat the odds, especially after her relapse.  I am the one who has been so jaded that when a stranger asks me about her diagnosis and what her chances are, I often simply shake my head and utter the word terminal.  I look away because I hate to see the look of shock and sadness on their faces, but at the same time I am tired of lying.  Tired of slapping a smile on my face, telling them how hopeful we are, telling them that Emily is a fighter and she will beat the odds, tired of having to show any enthusiasm at all when all I want to do it curl up into a ball and take a nap.

Emily has scans every 10 weeks, so I live my life in 10 week increments.  Never wanting to plan anything that can’t be cancelled for a full refund, never wanting even to look that far ahead.  This goes against my very nature.  I am a planner.  I like things organized, I like to pretty much plan out the year ahead.  Get those vacation plans sorted out, summer camps, trips to visit family, and everything in between.  I have to live daily with the constant knowledge that I can wake up the next day and have to drop everything to take Emily to the hospital for a week-long stay.  I say this from experience, as it has happened dozens of times.  The most dramatic was when she relapsed.  It blindsided us, and now I refuse to ever let that happen again.  So I live my life with a constant dark grey cloud hanging over my head, never knowing when that lightning bolt will strike.  Everyone always preaches to live in the moment, live life to the fullest, and I do try.  I do.  I sometimes am able to find moments playing on the floor with my son, pushing the kids on the swing outside, or just cuddling up with them to watch a movie.  But these moments are few because my mind is always turning.  When is the cancer going to come back? Next month? 3 months? 6 months?  Should I try and squeeze in a beach trip next month, just in case?  How about a trip to Disney?  My father constantly teases me that I always talk about vacations, and I admit it, I do.  I have spent countless hours planning trips that never come to fruition, as if I am living in the fantasy of these great trips but never get to take them.  

But now I am starting to feel hopeful again, now I am starting to make plans.  Over the last 5 years since Emily was diagnosed I have seen a lot of progress in the world of Neuroblastoma, and a lot of that success is due to the relentless work of organizations like the Isabella Santos Foundation, and I know every year children like my daughter will have more options because of them. This is why ISF is partnering again with Levine to bring a groundbreaking treatment to Charlotte.  This new MIBG treatment room will be a real game changer for children with Neuroblastoma.  I really hope that after listening to our story that you are motivated to really take action to help raise funds for neuroblastoma research. I really hope you share what you’ve learned here, tell your friends, your neighbors, your co-workers, and your family. I hope that by telling my story it gives you a new face to fight for in your community, a local child that is fighting this awful disease for which there is no cure, for which there is so little funding, for which there is so little hope.

But by donating to the Isabella Santos Foundation you are giving families like mine the hope that they desperately need to keep going, to keep fighting,  to keep hoping.  And just in case you still think your donation won’t make an impact, back in 2007 there was a group of families in NY that went to the lead researcher at Memorial Sloan Kettering and asked what they could do to help their children.  He told them the same thing, that there was a severe lack of funding for research and that while there were better treatments out there, they would not be explored due to the lack of funds.  These families got together, gathered other NB families and raised 2 million dollars to fully fund a clinical trial that began in August of 2011.  This treatment is currently being used to treat kids daily at MSKCC and has been very successful for relapsed Neuroblastoma. This one drug has made a HUGE impact in a very short amount of time. I have met dozens of families from so many different parts of the world that travel to Sloan Kettering for that very treatment.  That treatment wouldn’t exist if it hadn’t been for a small foundation formed by a group of parents who came together and got it done. That is what the Isabella Santos Foundation is doing for children here in our community and for children across the country. So when you feel like your donation is not going to make a difference, let me tell you, it will. The next clinical trial can be that ground breaking treatment that boosts the current 40% survival rate and dismal 5% relapse survival rate, to 80% to 90% to 99%. Please think about this when you make your donation today. Thank you.

Follow Emily’s journey on facebook:  Emily Erin Fights like a Girl