Family Stories and Letters
My name is Sara Moore, and I’m mourning my oldest son Charlie. He died of Diffuse Midline Glioma, a rare, inoperable brain tumor, on August 31, 2018 at 11 years old.
I am able to write this letter thanks to the immeasurable love of Jacob’s Heart and their selfless acts of compassion during the most traumatic year of our family’s life.
I remember standing on the cliffs at the beach after a whirlwind week in the Pediatric ICU when Lori Butterworth reached to me. An honest conversation & a simple invitation became one of the most meaningful relationships I’ve had in 40 years.
Each individual at Jacob’s Heart, from the Board members who also work in the cancer ward, to the volunteers who paint brown bags for the grocery deliveries we get on Thursdays, or the ladies who send thank you cards for those of us who can’t find the energy, have all changed me for the better.
We have laughed, cried, anguished and celebrated together. The Jacob’s Heart family has accompanied us to appointments at Stanford, hosted & attended our kids’ birthday parties, paid our bills and gave us the priceless gift of time together at Camp Heart & Hands.
When neuro-oncologists tell you to create memories with your dying child, it makes all the difference in the world if you have the heartfelt friendship, experience and financial, emotional & psychological support of a unique organization such as Jacob’s Heart. In our dreams they wouldn’t exist, in our shattered reality they are vital to the survival of kids, siblings, parents, grandparents, relatives and friends who are literally doing their best to endure the unfathomable.
Jacob’s Heart deserves every honor and accolade for 20 years of making the surreal details manageable, the hardest moments somehow happy, assuring us that someone cares.
The day my beautiful daughter Amani was born I prayed, “Help me be a good father to this precious little girl; let me guide her, teach her. And, Lord, when the boys start coming around, please give me patience.”
Seven years later, my wife and I were back at the hospital, clinging to memories of Amani’s sweet birth, as the doctors said, “Your daughter has cancer, a tumor on her kidney.” I can’t describe how it feels to hear those words. We fathers want nothing more than to protect our children. But in these circumstances, what would that mean? I knew I needed to be strong, to comfort my wife and our other daughters. But honestly, I wasn’t feeling strong when I heard those words.
Then they said something I didn’t understand. “You’re lucky,” they told us. “You have something in your community that most communities don’t have. It’s called Jacob’s Heart, and you won’t be alone in the days ahead.” At the time, I had no idea what that meant. But within days, it all became clear.
Jacob’s Heart guided us every step of the way, providing what we needed when we needed it – people to talk to who understood what was happening, information and explanations when we were confused, even gasoline for our car so we could make the countless trips back and forth to the hospital, and groceries when we couldn’t get to the store.
Perhaps most importantly to me, Jacob’s Heart introduced me to Vince, whose son Renzo survived the same kind of cancer Amani had. When we met, I told Vince we were on our way for a scan. Vince, knowing exactly how I was feeling, said, “Oh, you have scanxiety … Every time my son went for a scan I felt that way.” Words fail when I try to describe how comforting it was to be with a father who knew exactly what I was feeling. Vince and I became fast friends, as did our families. Today, with Amani and Renzo both miraculously well, Vince and I are helping other fathers survive their scanxiety, holding them close to our Jacob’s Heart family.
You too are a part of that family, generously making it possible for all of us to benefit from this extraordinary, essential organization. I honestly don’t know how we would have made it without Jacob’s Heart.
Today, I offer my deepest thanks to you, and ask that you join us again by supporting Jacob’s Heart as generously as you can. Together, we’ll be strong for the next child and family. And together, we’ll ensure that no parent walks this road alone.
The day we were told that our smart, funny, two-year-old daughter, Effy, had cancer, my husband, James, and I were in a complete state of shock. We had no idea what this diagnosis would mean and how we were going to get through it.
On that horrible, unforgettable day, I never would have imagined how much Jacob’s Heart would come to mean to us. With our closest family 3,000 miles away, we feared that we would have to fight this all alone. But, Jacob’s Heart was there for us with loving staff, hundreds of volunteers, and thousands of community members ready to embrace us, help us, lift us up, and become our family over the next three years of treatment.
It’s because of caring donors like you that we have had people walking this journey with us, celebrating the milestones with us, and being there when we needed it. Because of you, we have a network of caring people around us – people who get it.
So, thank you. Thank you for your ongoing support of kids like Effy and families like ours. Thank you for caring about Effy’s brother, Harry – for knowing that this is hard for him, too. Thank you for making it possible for Jacob’s Heart to continue to offer essential services to families. And, most of all, thank you for being a part of our family. James, Effy, Harry, and I have all felt the love from you. During the hardest times, your love has kept us going.
As Effy celebrates a year post-treatment and is enjoying Kindergarten like any other five-year-old, we can’t thank you enough for your generosity and support of this wonderful family that is Jacob’s Heart. I can’t imagine how we would have gotten through this without you.
In all honesty, I wish Jacob’s Heart didn’t exist. I wish it didn’t have to. I wish children never got cancer. But, children like my daughter do get cancer, and I have never been more thankful for an organization than I am for Jacob’s Heart.
“He’s my hero! Never once has he said, ‘I give up;’ he’s always trying and he doesn’t complain. He’s so positive. He has empathy for people. Like, if someone is crying, he will go up and ask them what’s wrong or give them a teddy bear or something out of his own personal toy collection.’ Here you go!’ He’s always been like that.”
Charlotte, a caring mother with a contagious smile, is speaking of her 11-1/2 year old son. She’s extremely proud of his positive nature and ability to turn challenging situations into acceptable experiences. Coincidentally named Lance, he, like Lance Armstrong, was treated for brain cancer in the year of 1996. Charlotte’s Lance, however, was 10 months old at the time of diagnosis. Born with what doctors thought was hydrocephalus turned out to be a cancerous brain tumor. The young parents of this pudgy, beautiful baby boy were instantly faced with challenges they couldn’t have imagined. They had limited, if any, knowledge about cancer and what lay ahead of them. Charlotte often refers to that time of their lives as “freaky;” freaky because they entered an unknowing, unexpected world of continual hospital visits, confusing medical terminology, and sudden feelings of fear and apprehension.
Hospitals, doctor visits, and treatments have become a way of life for Lance. He’s involved with a pediatrician, ophthalmologist, audiologist, oncologist, neurologist, and endocrinologist. He spent his first Christmas at the hospital undergoing 6 hours of surgery, underwent high dose chemotherapy at 14 months and radiation at 16 months. At 18 months, the family heard the word “remission,” and they celebrated! Now, a 10-year cancer survivor, Lance is a typical 11 year old boy. He does not like girls, hates the color pink and loves to ride his quad. His overall development has been a bit slower as a result of all the early treatments, but in recent years he seems to be catching up. He knows himself as a “cancer kid,” although he was too young to remember chemo and radiation. The cancer diagnosis follows him from year to year, and he has become an expert on advising the nurses and doctors as to what needs to be done, where and when. “He’s a crack-up,” says Charlotte, “When he gets to the hospital, he pulls up his sleeves, takes his own temperature and tells them to use this, this and this… which are the tubes that need to be drawn.”
For Lance and his family, one of the most significant developments during their cancer journey has been their intense relationship with Jacob’s Heart Children’s Cancer Association and other families with children with cancer. Charlotte cannot say enough about the support that has been provided to all family members. The other moms at the hospital going through the same experiences were of great comfort to her. She remembers the days when Jacob’s Heart was in its infancy and didn’t even have an office. She had heard about a support group and joined three other moms at Fresh Choice. “It was great. I could talk to people and I can tell them what I was going through and they could tell me. And it gets better…because I was still freaking out. And they’ve been there ever since.” She even calls Jacob’s Heart today when she needs advise on handling issues that might affect Lance. Lance is still involved with Art from the Heart and Jacob’s Heart events at the new Watsonville site, which the family loves since its only moments away from their home.
There is such sincere and passionate love reflected in Charlotte’s eyes and smile when she talks about Lance. But that’s not all that is evident. Charlotte has a gold ribbon tattooed on her ankle that has Lance’s name, birth date and remission date on it. Lance, indeed, is her hero!
Imagine hearing that your child had a bad case of asthma to later learn that it was a football-size tumor pressing against her lungs that was affecting her breathing. “No way, ever, ever, ever – even in your worst nightmare – could you think that could happen to your child.” The statement “she has a tumor” seemed surreal, impossible, and certainly inconceivable – a tumor? Her daughter, Samantha, was only 4 years old.
When the elevator opened onto the 7th floor of UCSF, Diana felt like she was walking into a obscure dream. Seeing so many bald children and teenagers rolling around their IV stands, she knew at that moment that her life and her family’s life had changed forever. While she was still in shock and barely comprehended the doctor’s diagnosis of only a day ago, she knew then that she would have to be strong.
Diana and her husband had agreed early in their marriage that they would never have a babysitter take care of their kids. As a result, her husband worked a graveyard shift and Diana’s days began at 6:00 a.m. At least one of them was always available. Now when she looked into her husband’s eyes, she knew that they would be challenged to maintain some consistency for their other children, while being there wholeheartedly for Samantha.
Samantha was first diagnosed with Wilms Tumor, a type of kidney cancer that occurs in children; and, later with a second tumor in her lung. The diagnosis constituted stage four cancer. Diana and her husband began a journey that no family ever expects or could ever be prepared for. Samantha’s first treatment would include 14 continuous days of chemotherapy. They took their one-year old son and drove to and from the hospital daily. They never left Samantha’s sight and yet they made it home by the end of each day to be there for the other children. “My husband and I put any differences we had aside and just became one,” she said.
Samantha went through 30 weeks of chemotherapy and surgery over the course of the next year. The family traveled to and from the hospital from their home in the Salinas Valley, sometimes for a 15 minute visit and other times for a 45 minute treatment. Diana was fortunate to have the support of her employer and as time passed, she worked on Saturdays and at home with a BlackBerry and laptop to be with her other children while she and her husband shifted their care for Samantha. The two older children, one in high school and the other in middle school, were deeply affected by Samantha’s diagnosis and they too needed support.
It wasn’t until someone at work told the family about the services of Jacob’s Heart that they realized there was support for them at home. While at the hospital, they were surrounded by doctors, interns and social workers. Knowing about Jacob’s Heart came at a good time. Diana commented, “It was a blessing in disguise knowing that in my hometown there was such a great organization with great people who could help!”
The family immediately received gas cards to assist them with the financial burdens created by the hospital visits. Diana remarked that at that time everything was so stressful, and the financial support lessened at least some of the stress felt from the demanding and challenging cancer-related experiences they encountered.
Diana and Samantha joined the support groups available at the Salinas office. She said of the parent support group, “We shared the same story with the treatments and how it affected our families. We found a place where we could talk and be understood.” Samantha loved the arts and crafts, scissors, tape and glue – anything she worked with during the Art from the Heart program that offered her a nonverbal form of self-expression. They also participated in the Adopt-A-Family program which Diana referred to as “over the top!” Her family was adopted by a produce company that brought them such joy and made their holiday season undoubtedly “over the top” that year.
Today, thankfully Samantha’s cancer is in remission and she is doing very well. “It’s so very emotional thinking that she’s made it!” said Diana. Sending her off to Kindergarten this August was a teary moment for Diana. Samantha on the other hand entered school like any other child, excited to be there and ready to meet new friends – and for her, to begin a new and momentous journey.
Diana continues to receive services through Jacob’s Heart and is grateful for the “connection” and understanding she receives from other families and the staff. When Samantha has even a slight cough, it still sends chills down her spine with fear that it might be coming back. There are frightening feelings that don’t go away quickly or easily.
Enjoying getting life back to “normal” with her loving family, Diana is moving on. She has started her own business selling a colorful line of comfortable hats for girls and boys. The hats are inspired from Samantha’s loss of hair during her chemo treatments. Samantha’s Hats is a charitable business with proceeds going to cancer organizations, such as Jacob’s Heart. She has found an outlet to express herself, to give back and make a difference – something of great importance to Diana as she recovers from what seemed like an eternity of worry and anguish to a place of hope and compassion!
There are some things in life that are given the tag of priceless… like our children, families, and the experiences that we create with the ones we love. That is what Jacob’s Heart Children’s Cancer Support Services is all about; creating priceless moments for families like mine.
Christmas. Birthdays. All holidays became luxuries – part of our life before cancer. Not this year though. This year would be different. When I got the call from Jacob’s Heart saying that my family would be one of the families adopted for Christmas, I was relieved. So much had been taken away and neglected since our baby Matthew was diagnosed with a rare form of leukemia. Our family needed some magic, and my children deserved a holiday full of dreams come true. Most of last year was spent inpatient at Lucile Packard Children’s Hospital fighting cancer, unable to be home for months at a time.
It was my little cancer warrior’s second Christmas and, although still in treatment, Matthew was doing well. That meant he would get a real Christmas; one that would be spent at home surrounded by all things that had nothing to do with cancer like presents, Christmas trees, family, and friends.
Fighting cancer had taken its toll on our family’s finances, and providing the kind of Christmas we imagined for our family would be impossible. When a child is diagnosed with cancer their care is so critical that parents have to quit their jobs to care for their terminally ill child. Matthew’s cancer diagnosis reduced our two-income family by 50% overnight. Our family was suffering from the financial crisis brought on by childhood cancer, and money was tight.
Kindness and Love
Knowing that, through the kindness of the people at Jacob’s Heart, our Christmas tree would have presents under it was comforting. I remember so clearly when a volunteer from Jacob’s Heart called to get our wish list, I felt guilty. We were a large family with four children, I told her to leave Lily off since she was just a baby and wouldn’t know the difference. “She must need something…it’s Christmas,” the volunteer said. She was right; when a child in a family is fighting cancer that fight takes all precedence. The needs of other family member can become neglected. Our little Lily was actually in dire need of clothes.
The people at Jacob’s Heart took extra care to help our family have something we had missed so much over the course of Matthew’s treatment – a chance to create precious, happy, stress-free moments with our family. The Jacob’s Heart volunteer asked me to give her a list and options, not letting me get away with, “Oh just anything will be fine.” She urged me on with questions like, “What do they really want?” I struggled with thinking about what it all would cost, especially when it came to choosing items for my teenaged son. But Jacob’s Heart was persistent, trying their hardest to help my children get their heart’s desire (including the pricey remote control helicopter for Izahia).
Smiles and Laughter
When the call came from Jacob’s Heart to tell us our gifts had arrived, we all piled into the car, another Jacob’s Heart volunteer greeted us and said, “You’re the Pierce family; these gifts are for you.” She pointed to where an entire back wall was covered by bags of gifts to be delivered. I walked to the area she pointed and saw two large bags filled with gifts that had our name written on them. The kids smiled at each other excited for what was contained in the big bags. We thanked the lady and turned to leave. With a big smile she said, “No, not just those bags, that whole pile.”
My children burst into squeals of delight. Our car was packed to the roof with bags full of presents and children who could not stop smiling and laughing. It had been quite some time since I had seen looks like that on their faces, and I was happy for what Christmas Day had in store for my family, we had been through so much.
When Christmas morning finally came we all woke up super early. With excitement, my kids opened each thoughtful gift. They received not just one item on their wish list, but pretty much everything they had wished for and more. Izahia, got his helicopter, which brought so much joy to all the kids as it flew overhead flashing and beeping. Lily received a variety of wonderful outfits. Our little cancer warrior, Matthew, was lavished the most. It was like they couldn’t stop thinking of wonderful gifts to give my boy on his very first Christmas at home. Matthew opened gift after gift. Stopping to play with each one – trying on hats and wanting to read all of his new books.
The Last Gift – Priceless
The Jacob’s Heart’s was persistent in filling my family’s needs, and the needs of other local children with cancer and their families. There is no price tag one can put on these essential services. They are priceless. Many of the Jacob’s Heart children don’t have the luxury of tomorrow.When we thought we had opened every wonderful gift, we noticed one gift remained, hidden and slightly tattered, under our tree. This “last-but-not-least gift” was addressed to my husband, Ron, and me. No one had said anything about including the two of us. Inside was the most beautiful, thoughtful gift. A date night had been planned for two beaten-down and exhausted parents. Ron and I had not thought of ourselves in a long time, and we both were immediately touched. Someone invested a lot of time, thought, and love into the night they planned for us. We were so sweetly reminded that we are not alone in this battle, that there are people out there to help families like ours.
For some cancer warriors like my Matthew, his first Christmas at home was his last Christmas at home. Time with your child becomes not a matter of quantity but quality.
I am so thankful to all who are not discouraged by the busy holiday season or long lines, but who are instead inspired to bring priceless moments to a family like mine. A few days after that Christmas, moved to tears by the kindness of our family’s Secret Santa, I looked at my husband and asked, “How did they know what we needed?”
They knew because Jacob’s Heart Children’s Cancer Support Services told them. Priceless.