when faced with the elephant. one bite at a time is always wise.
a bone marrow transplant is an elephant. any way you look at it. it’s very big and it’s very frightening.
in january 2014 i entered memorial sloan kettering in new york city with the hopes that i could conquer my 3rd go around (i had conquered 2 in the late 1980’s) with rare and often fatal bone marrow failure disease. myelodysplastic syndrome (MDS). to do nothing, i would have less than 2 years left of my life.
because the process of transplant blows away one’s immune system, you live in a room in isolation for sometimes months. and then you leave and wait for your body to accept these cells that will give you a new lease on life.
in april, i was overjoyed to transfer to the american cancer society hope lodge in the city to finish out my time of waiting.
two weeks of feeling better, walking the halls (no outside yet) and i was beginning to have hope that i would see my home again, my mom, my friends, my flowers.
BAM. virus. rush to the ER. back in the hospital. i was done. i had nowhere left to dig from. i lost my mojo. the mind is as critical as the body. i wanted no part of greetings from family and friends, gifts, calls, facetimes. anything my husband brought, went into a pile. that’s where he put the gift bag.
here is the story of that gift bag:
I’d like to tell you a story. A story is the shortest distance between two people. This story is about a team of 3rd graders, their teachers, administrative staff and my friend.
Imagine a school, in a neighborhood of hard working parents, some working two jobs, others without jobs. Low income housing, challenges of the influence of the streets, keeping their children in school, paying the bills, putting food on the table and creating an environment where children can be children. An elementary school in need of many of the basics that others take for granted. Proud people raising children at a time when the world often doesn’t make sense let alone their own neighborhoods.
My friend Mary Beth, Employee Champion to this school, introduced me to Roosevelt Elementary. I had attended a few events to read to the children, to celebrate Christmas through each room being transformed into a winter wonderland by the staff and collecting backpacks to carry their schoolwork. I came away understanding that they are a proud school. The teachers, administrative staff and Mary Beth devote their energy, money and souls to putting that spark in these children and this school. They create possibilities. Little did I know what impact they would have in my life a few years later.
We had spent the past 300+ days being told I was very sick with MDS (Myelodysplastic Syndrome – Leukemia) and that I was dying. We had to find doctors and a hospital, create a plan, go through weeks of chemotherapy to prepare me for treatment followed by 6 weeks in isolation having more chemotherapy than a human body should handle and then receiving stem cells through a bone marrow transplant from my donor, my brother Neal. Finally, “Home” I went to the American Cancer Society Hope Lodge in New York City to spend the next 3 months praying for the stem cells to do their job, gaining strength, learning to eat and fighting off the dangers of the environment.
And there I was, back in a hospital room again. Internal viruses. The mental game that I had worked so hard to put in place was gone. I didn’t believe I could do it again. I had nothing left to pull from. This had never happened to me. My husband walks into my hospital room with a gift bag. While I was thrilled to get cards, letters, gifts – not this time. I was mad, confused, hurt and tired.
Late that night, my room lit only by the lights on the dozens of pumps on my pole that was giving me nutrition, medication and relief, the gift bag tugged at me. That thought is one of the only things I remember from the second stay in the hospital. Opening the gift bag, I find a booklet. Written in crayon on the cover of green construction paper is “To: Ellen, Get Well”. I don’t know any school children. My daughter is in college. I’m well past those days. I open the folder and I am taken into a world of “What Does Hope Mean to a 3rd Grader?” Pages of essays to me containing their thoughts and words about hope wrapped in what children do best. Honest. Sincere. Funny.
“Hope means something to believe in and not give up”
“It means the strength to make it through anything”
“Hope means faith in God and anything is possible”
“It means to imagine because you think about how you want things to be”
“Hope means you have faith in yourself”
I don’t know one name in the booklet. But I felt every single one of these 3rd graders as I laughed and cried my way through reading every one of their essays to me. Each one was a reawakening in me to believing in something I had let go of – HOPE. The teacher and administrative staff added a special surprise. They had laid the children down on the gym floor. Spelling each letter of the word Hope with their bodies. Photographed and framed and presented to me. I can just hear them. “Look what we get to do.” “This is silly.” “This floor is hard.” All I saw were their smirks and smiles.
I wasn’t sure I had anything left. Roosevelt Elementary School in Allentown had other ideas. The children, teachers and administrative staff and my friend saved my soul on a day in April when I couldn’t find it on my own. There is such greatness in that. A school that gave of themselves with what they have the most of. Love, Compassion and Hope.
one year later, i was celebrating my ‘first’ birthday. behind me, my ‘roosevelt’ wall.
With the help of my friend Tracy and my daughter Kate, we recorded this and sent it them.