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... 

Zach, Age 12 Diagnosis: T Cell Acute Lymphoblastic Leukemia

Remember me…
It’s hard to quantify the number of lives one person can impact. There is a ripple effect. Zach touched an unquantifiable number of lives in his 14 years here with us. From his family and friends who were lifted by his upbeat spirit, to his baseball teammates who he inspired with his perseverance to play in their Little League Baseball Tournament in the midst of his cancer treatment, to all of the children he was able to help by creating a charity fundraising team which raised over $50,000 for pediatric cancer research, and the hundreds of people who came together to honor his life after his passing.

Zach’s journey may have ended, but the impression he left on others lives on.


Otto, Age 12 Diagnosis: Acute myeloid leukemia

Live life to the fullest…
“Someday I hope you get the chance to live like you were dying.” – Tim McGraw

It’s the little moments that matter. Laughing with friends. Hugging your mom. Throwing a baseball. Unfortunately, sometimes it takes a life-threatening illness to realize this. After his 13th birthday, Otto faced a cruel reality: he didn’t have much longer in this world. But he would make the last few months count. He joked around with the nurses daily and played pranks on them. He raced toy cars up and down the hallways. He had costumed theme days like “Star Wars Day” with friends & family. He watched the World Series with his little league team in the hospital playroom. Otto made the most of his final days, sharing all of the life he had to offer.


Sophie, Age 11 Diagnosis: Leukemia

It won’t define me…
For most young girls, it’s hard to imagine being beautiful without any hair.  When Sophie found out she had leukemia, she cried for days at the thought of being bald. Sophie went on to miss her entire 6th-grade year going through treatment.  And yes, she lost all her hair. After being away for a year, it was time to go back to school. Instead of hair, she had a wig. When her mother asked her if she wanted to wear her wig on the first day back to school, logically Sophie thought, “what if the wig fell off during gym class?” She came to an important realization – it’s only hair.  She went back to school, without a wig, without any hair, and let everyone see what it truly means to be beautiful.


Trent, Age 18 Diagnosis: Non-Hodgkin lymphoma

Setting an example…
High school graduation... Time to celebrate. Time for the future to begin. For Trent, it was “Time to head to the hospital ASAP.” That’s what happens when you’re diagnosed with Stage 3 Non-Hodgkin lymphoma at age 18. Even though Trent was on the cusp of adulthood, he was still considered a pediatric patient and was admitted to the hospital alongside children less than half his age. Going through treatment was difficult, filled with sickness and pain. But whenever he was around the other children, Trent kept a big smile on his face. When his mom asked, “Why didn’t you tell me you weren’t feeling well?” He responded, “I was surrounded by little kids who are so much worse than me. If I can be someone they see smiling, maybe that will give them some hope.”


Amelia, Age 2 Diagnosis: Acute lymphoblastic leukemia

Cancer won’t stop me…
There is no such thing as a normal cancer journey. For Amelia, there were times when she felt like a guinea pig – surgery at age two, weekly lumbar punctures, unusual side effects like losing her nails, and rashes all over her body. But through it all, she surprised everyone with her good spirits. She approached cancer treatment in a way only a child could.  She called chemo “going to the Doctor’s House,” and created an alter-ego for herself named “Mi Mi” every time she went. With her mom’s help, she turned treatments into modeling shows by putting on different dresses, boots, lipstick, and glasses. The nurses called her the “fashionista”.   This fashionista showed everyone what moxie can look like.


Victoria, Age 4 Diagnosis: Rhabdomyosarcoma

We’re in this together.
Helpless. That’s what all parents feel when their child has cancer.

There was nothing Victoria’s mom could do about the tumor wrapped around her daughter’s leg muscle. There was nothing she could do about Victoria’s bone graft deteriorating. But when she noticed clumps of hair falling off of Victoria’s head, she thought, “Maybe this is where I can help.” She took Victoria to the hair salon to get her head shaved, and at the same time, she got her own head shaved as well. It turned into a fun day for Victoria, as she even helped the hair stylist shave her mom’s head.  

A mother doesn’t have to be a doctor. Sometimes, just being a mom is what a child needs.


Joshua, Age 14 Diagnosis: Hodgkin lymphoma

Make the best of bad situations…
Every year Joshua dressed as a different Pokemon character for his favorite holiday, Halloween. But, after being diagnosed with Hodgkin lymphoma, he knew Halloween would be different. Joshua went through harsh chemo which made him nauseous and exhausted. He didn’t have the energy to eat, shower, or even get out of bed. But what about Halloween? In between bouts of nausea, and with a thick layer of sarcasm Joshua told his parents “Well, no one will know who I am anyway.” He giggled and proceeded to put on his costume. As sick as he felt, he was not going to miss this. Josh managed to go out that night to visit several of his friends’ houses, dressed in full Pokemon gear, and it became his best Halloween yet.


Amanda, Age 10 Diagnosis: Acute lymphoblastic leukemia

One step at a time…  
They thought they were losing the battle. Amanda was in a hospital bed for over two months with a fever that wouldn’t go away. The doctors tried all that they could, but nothing seemed to work. One day, a very special nurse had a talk with Amanda. This nurse had the same cancer when she was her age. She explained everything she went through at the time and that this was just a process that some kids go through. She said all Amanda could do is take it one step at a time. Thinking of this gave Amanda strength and the belief that she could overcome this. Eventually, her condition started to improve and Amanda was declared cancer-free. Sometimes the right words can be the best medicine.


Luke, Age 9  Diagnosis: Medulloblastoma

Today was a good day ...

A fourth round of Super Mario Kart. IV pole races down the hallways. Regular Wednesday visits from friends. Board games spread out on the floor, just like home. To a child, there's no moment like the present. Even if that moment finds them with a chemo drip, an unexpected platelet transfusion, or another missed day of school. Children embrace the moment to play and to just be a kid. They face their cancer with the same abandon. 

Today can be a good day.


Oliver, Age 10  Diagnosis: Large B-Cell Lymphoma

We've got this. 

There's no way to know the outcome. There is no secret formula or guarantee when it comes to cancer. But having the confidence to face each day head-on makes the journey seem less daunting. Confidence helps a kid like Oliver to let his true personality shine through, even when he might not feel quite like himself. Confidence gives him the nerve to pull a prank and entertain the nurses. To throw on a cool hat and strike a pose for a photo. Confidence is what lets a child get out of bed every morning, look up at his mom and say, "We've got this."


Heather, Age 16 Diagnosis: Hodgkin Lymphoma

Making a difference.

Sometimes, being forced to face an illness brings out the best in a person. You discover your best qualities - your strengths, your resilience. For Heather, cancer unveiled a sensitive, more compassionate teenager - someone who wanted to take her experience and do something positive with it. 

When her treatment was complete, Heather put aside time in her busy daily life to participate in an event that would support those still battling cancer. She recruited friends and family to help her reach her goals, and together they were successful. 

Nobody chooses to get cancer. But what we choose to do with it can make all the difference.


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


"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. 

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


"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. 

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

I’m still your brother.

I’m still
taking your toys
goofing off
telling you secrets
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: