Life Within The Journey

- Beyond the diagnosis, a portrait of what endures -

The children and their families in this exhibit just happened to be in treatment for cancer at Yale New Haven Hospital when they were approached by photographer Jeanna Shepard to have their portrait taken. Through her lens and their personal stories, an intimate and inspiring view of the everyday life of childhood cancer is revealed. One that illuminates the resilience, strength, and spirit of those who face childhood cancer but refuse to be defined by it. The road is full of uncertainty. But these families show that there is joy, clarity, and purpose. There is life within the journey... 

Alexis, Age 3 - Diagnosis: Acute Lymphoblastic Leukemia

Cancer is scary. 

With every diagnosis comes an undeniable fear. But that fear can ignite an inner strength, allowing us to stand tall and face each day, even when that day looks terrifying. A child will cope with infusions, stay still for finger pricks, and count to ten to pass the time until the scans are done. 

Cancer is scary, but bravery is found in what we do, despite how we feel.


 

Anajah, Age 17 - Diagnosis: Metastatic Alveolar Rhabdomyosarcoma

New Wig: Day 1

Anajah arrived for the photo shoot in a wheelchair, head wrapped in a red bandana, holding a package in her lap. This wasn't going to be easy. The wig was new, foreign and way too complicated. But once the stylist began to work with her, Anajah's self-consciousness slipped away. She stood up, transformed. She was not sick, or worried, or scared. In that moment, her silly, bright spirit came through. 

In this journey, we never know what will spark the special moments that will keep us going. Anajah lost her battle in November 2014. But we will always remember her just as she was on the day we had the privilege to take her photo. She was alive in every way.


 

Nico, Age 9 - Diganosis: Acute Lymphoblastic Leukemia

Gratitude

"When you are grateful, fear disappears and abundance appears." - Anthony Robbins


 

Bethsabe, Age 21 - Diagnosis: Acute Lymphoblastic Leukemia

Peace is personal. 

It is different for everyone. But despite the fear, the poking and prodding, and the demands of daily treatments, everyone experiences moments of peace. For some, peace is found in watching your child breathe in and out as she sleeps quietly tucked into her blankets. For others, peace is appreciating the crisp, fresh air after two weeks in the hospital. Peace can be a friend or a volunteer playing cards with your child, giving her the chance to feel normal again. 

Peace may come when you least expect it, but you will find your moments.


 

Brenda, Age 17 - Diagnosis: Acute Myeloid Leukemia

I am so proud.

Your smile was a gift when I was weak. Your strength carried me when I needed it most.


 

Daniel, Age 7 - Diagnosis: Acute Lymphoblastic Leukemia

27,240 hours...

Diagnosis at age five. 
Stroke 19 days after diagnosis. 
One week in Pediatric Intensive Care Unit. 
Two weeks of blood transfusions. 
Five weeks of inpatient stroke therapy. 
Paralysis on right side and loss of speech. 
19 lumbar puncture intrathecal chemo treatments. 
Three bone marrow aspirations. 
Six inpatient high dose IV infusions of methotrexate. 
180 missed school days. 
Remission. 

1,135 days. 162 weeks. 27,240 hours. 
However you calculate it, it was too much. But not for Daniel.


 

Kemonnie, Age 7 - Diagnosis: Anaplastic Astrocytoma

Community 

"I've learned that people will forget what you said, 
people will forget what you did,
but people will never forget
how you made them feel"

- Maya Angelou


 

Julia, Age 22 - Diagnosis: Ewing's Sarcoma

Making the choice. 

One day, you're looking forward to college graduation, excited for your future. The next, your world is turned upside down and it feels like nothing will ever be the same. That is how cancer happens. Always unexpected, always life-altering. 

But how someone chooses to face a cancer diagnosis makes all the difference. Though she dealt with months of chemotherapy and weeks of radiation while far from home, Julia's positivity was contagious. She chose to help others, devoting her time to a camp for children with cancer. She chose to continue to learn and grow through her studies. She chose to smile and spread love and gratitude to those around her. Julia chose joy. 

Sometimes life gives you just who you need to stand by your side.


 

Madeline, Age 9 (left) - Diagnosis: Acute Lymphoblastic Leukemia (ALL), Secondary Acute Myeloid Leukemia (AML)

I get by with a little help from my friends.

Cancer is not something a child faces alone. Friends are there. Family is there. A team of supporters rallies behind you, and they lift you up every step of the way. Maddie had that team. And whether it was a neighbor organizing meals, or a friend coming to the hospital, someone was always there. 

But, maybe the most loyal friend of all was Maddie herself. Because even when this very brave 9-year-old girl knew what was coming, she made sure that she was there to comfort her team. At the end of her long journey, Maddie was the one who reassured everyone that everything was going to be okay. 

Maddie passed away on April 6, 2016, surrounded by her family and forever loved by her very loyal supporters. 


 

Sumera, Age 2 - Diagnosis: Ewing's Sarcoma

Once Upon A Time...

Once upon a time, there was a little girl named Sumera. Sumera loved pink dresses, pretty princesses, and above all, fairies. She was just about as girly as a girl could be. So when Sumera started to lose her hair, she was very, very unhappy. 

But Sumera 's mother explained that little girls like Sumera have an extra special fairy to watch over them. The Hair Fairy, she said, was just borrowing her hair for a little while, so that a child who needed it more than Sumera would be able to use it. It comforted her to think about her special fairy. 

While the Hair Fairy borrowed her hair, Sumera received many magical surprises gifts and toys, and even a room makeover fit for a princess, delivered
by real winged Art From The Heart fairies. And just as promised, a little more than a year later, the Hair Fairy returned her lovely locks, good as new. 

Sometimes it takes just a little bit of fairy dust to carry us through.


 

Collin, Age 4 - Diagnosis: Pilomyxoid Astrocytoma | Mother's Diagnosis: Breast Cancer

Love ... 

Love binds a mother and child. 
Love strengthens a mother to battle her child's cancer, while silently battling her own. 
Love allows a child to see his mother's beauty, despite having lost his sight. 

Love is stronger than cancer. 


Cachet, Age 20 - Diagnosis: Sickle Cell Disease

Cachet (n): The state of being respected or admired.

So aptly named is Cachet, and so deserving of our respect and admiration. There is so much more to this young lady, hidden behind that radiant smile. Cachet is paralyzed from the waist down. She and her brother both have Sickle Cell Disease and her sister is the transplant cell donor for the two siblings. But Cachet's smile is genuine. With her family's unwavering support and her own internal grace, she carries on. And, despite what life has handed to her, she still boldly throws on her fantastic, big earrings ... and smiles. 


 

AJ, Age 6 - Diagnosis: Acute Lymphoblastic Leukemia (ALL)

I’m still your brother.

I’m still
laughing
playing
taking your toys
teasing
goofing off
telling you secrets
joking
tattling
making funny faces
looking up to you.

I may have cancer.
But I am still your brother.


 

Eli, Age 6 - Diagnosis: T-Cell Acute Lymphoblastic Leukemia (ALL)

We can do this together ...

Eli's note to his Nana, just diagnosed with ovarian cancer: