Sandra's Story:

Parent Story: "February 26, 2018 a date that will always be engraved in my head. It has been almost two years since my daughter’s diagnosis with Ewing Sarcoma, a pretty bleak diagnosis looking from a statistical side which was hard for me not to look at since it is what I do at work. I remember the day like it was yesterday.  I was on the train commuting to work when my daughter’s doctor’s office called that we should come in as soon as possible. We were supposed to have an appointment later that afternoon, so I was a bit taken back by the urgency of having to come in immediately. I turned back around to get Chiara and drive us to the hospital. My husband left work to meet us there. Once we arrived, we were immediately put in a room and multiple doctors filed in. I remember looking at the tag of one doctor seeing “pediatric oncologist” on his tag and my heart fell, knowing that this was not going to be a good meeting. Once we were settled, we were told of Chiara's Ewing Sarcoma diagnosis which was a shock but also somewhat of a relieve after a year of going to doctors and two unnecessary surgeries at a different hospital. 

That day a whirlwind of activities started.  Her diagnosis gave her an automatic admission to get staging done and treatment started as quickly as possible. While Chiara and my husband where waiting for her to get admitted I drove home to get her things and break the news to her then 13-year-old brother. I do not know how I made it home that day, the feeling that a high-speed train just destroyed everything in its path. The next three days where filled with scans, bone marrow aspirations, port placement surgery and finally the start of chemotherapy. During this time, we learned that the protocol used for Ewing Sarcoma is very outdated and has not changed in over 30 years.  There was no targeted therapy. They only choice she had was Chemo of the worst kind. Due to her age which was barely an adult I did not have to sign the papers to give permission to have my daughter’s body poisoned in the hope she would survive.  She had to do this all by herself, and she did it with a smile on her face.

The next weeks our life changed from discussions of coming to see her perform in Romeo and Juliette at the Kennedy Center in DC to filling out health care proxies, power of attorneys and discussions of potential life end choices with hospital psychologists and social workers.  How did all of this happen in one week to my beautiful healthy 19-year-old daughter? Little did we understand what a childhood cancer diagnosis meant back then. Chiara went through 14 cycles of chemotherapy infusions, each cycle lasting between 3 to 5 days. 5 different drugs all with horrendous short- and long-term side effects. 32 radiation treatments. 50+ blood product infusions and she never complaint.  We lived in the hospital for practically 9 months, getting admitted after almost every single cycle due to neutropenic fever, which pretty much landed her in isolation 12 out of the 14 cycles.

A week after her first chemotherapy treatment was the first time, she ended up getting admitted with her heart rate at over 140, blood counts at pretty much zero and a fever of over 103. She was pretty much sleeping 22 out of 24 hours and looked almost unresponsive.  I asked her oncologist if this was normal as it appeared to me that the treatment was pretty much killing her. He shrugged it off and said she was a strong girl and would pull out of it. I was pretty much sitting next to her bed watching her breath making sure she was still alive. Sadly after a few cycles I got used to this pattern and accepted it as a new “normal”. One time a nurse told me that there was no need to stress unless they were stressed. The funny part is that I used to panic over things that where trivial from a medical perspective, yet when things became serious, for example when she developed an allergic reaction to a blood product that was infused or her heart rate tumbled to 32 and the rapid response team was standing by an utterly calm overcame me. I spend long periods of time crying in the hospital bathroom pulling myself back together, washing my face to reappear with a smile so she would not see how much it hurt as a parent to have no power whatsoever to change what was happening to her.

In all this ordeal there was my 13-year-old with his own needs yet often forgotten or brushed to the side. The sad part of a family going through a childhood cancer diagnosis is the loneliness it brings. The friends and even family that do not understand what you are going through and you ultimately lose mainly because our own perspective of life has changed. Yet many people we barely knew stepped up to help us in many ways and became friends. I will forever be grateful for the support they gave to my son when I was not able to give it to him. We also gained new friends in other childhood cancer families that I would not trade. Now in the aftermath of childhood cancer we find ourselves in what seems like a minefield with bad news pouring in from many sides. Children dying, becoming terminal and relapsing.  From what it seems we are one of the lucky once. Chiara made it through treatment and is doing well, she is getting her life back together, also still under heavy medical surveillance. My hope for her is that she has many years of life left to leave her impact on this world. She seems to take every day as a new gift. For me sometimes the panic comes back, triggered by small comments such as "my foot hurts", knowing it is probably nothing but always second guessing if there is more to this pain. What I will never be able to forget is seeing some of her friends she made during treatment wasting away from cancer each time I saw them and ultimately passing away. We need a cure for Ewing Sarcoma and all childhood cancers. No family should have to go through this.”