Here to Serve works with many families as they go through their pediatric cancer journey. It is  a privilege to be allowed into a family’s life during such a challenging time. While many of the journeys have a sad ending, the survivor stories give us hope. I recently had the opportunity to speak with Erika Torres, mother of cancer survivor Danielle Torres. I want to thank Erika for sharing her thoughts and feelings with me, and thank Danielle for allowing her story to be told.

The Diagnosis

In 2016 Danielle was diagnosed with B- Cell Acute lymphocytic leukemia (ALL). She was six years old. ALL is a fast-growing cancer of a type of white blood cells called lymphocytes. These cells are found in the bone marrow and other parts of the body. Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. It affects certain cells in the immune system, called B cells and T cells. ALL usually affects B cells in children.

The Beginning of Danielle’s Cancer Journey

At six years old, Danielle was a very active and cheerful little girl. Always up for an adventure, her parents were concerned when she began to be listless. Along with this, she had frequent, intense back pain, ran a fever, bruised easily, and had light colored gums. Multiple visits to the ER and her pediatrician frustrated them, as they believed her symptoms were something other than the “virus” the doctor insisted she had. The doctor’s also insisted that it was normal for a six year old to bruise, due to the nature of their activity while playing, and that she needed to eat more “greens”. By this time Danielle had been inactive for over a month due to her back injury, so her parents knew she wasn’t bruising due to activity. They were increasingly frustrated and worried that no one was listening to them.  After Danielle’s pain became so excruciating that she could not walk, Erika and Dan made a stand: they would not leave the doctor’s office until a full blood panel had been ordered. The blood panels showed what their intuition had known, their little girl was very ill: her HGB was 6.0, which was extremely low. After running the blood panel a second time for accuracy, the doctor said a blood count this low was called “neutropenia,” which could mean three things: a post- viral infection, A-Plastic Anemia, or Leukemia. The next day, after a long day of 13 hours at the hospital, their worst fears were confirmed, with the diagnosis of B- Cell Acute lymphocytic leukemia.

The night of her diagnosis, they were guided into a private room, along with MDs, nurses, and a social worker. The doctor grabbed a box of tissues on their way in, and she and Dan knew it would be bad news. Erika remembers, “When they told us, the room began to spin. They left the room to give us some privacy. We both cried, Dan held me and told me that “this was the road we were on, we have to do this.” Hearing his words gave me strength. He shifted my thinking.” And to other parents, she says, “It’s ok to cry, to be devastated, sad, depressed. Many times I felt this way, I didn’t even want to get out of bed. But I knew I had to get up and keep pushing through. I needed to go to war for my child and save her from this beast!”

Danielle was admitted to Children’s Hospital in Los Angeles immediately and treatments, and their battle for her health, began. She started her chemotherapy and was fitted for a back brace. She was given 3 blood transfusions and 2 platelet transfusions, a bone marrow aspiration and 2 spinal taps. They would spend the next 14 days waiting for results and seeing how she would respond to the medication she was getting.

Although Danielle’s blood work showed no active cancer after 30 days, her journey had just begun: there would be treatments and hospitalizations four long years to insure she was cancer free. A very long journey, which would impact their entire family.

Support for Pediatric Cancer Families

There were so many kinds of support needed during this time. When you begin this type of journey, you are focused on the child that is ill. Advocating and caring for your sick child is more than a full-time job; and it’s an emotionally and physically draining. However, you also have other responsibilities: work, household, marriage, and family. Erika believes that the journey is so daunting that:

“Counseling should be a mandatory part of cancer treatment. When a child is diagnosed, you are laser focused on doing everything you can to save your child. Of course, this is necessary, but while you are focusing on your child time slips by and you don’t realize how much this shift in your lifestyle has affected everything else in your life: your relationship with your spouse, your other children, your overall life. Danielle’s sister, Breanna, is only two and half years older than Danielle, so she was also still a small child during the cancer journey. I will always feel that I missed so much of her childhood, as I was the one primarily responsible for Danielle’s care. This meant long stretches in isolation, either at home or in the hospital, while I cared for Danielle. Counseling helps you pull back a little and balance your life, to the benefit of everyone. Thankfully there is a movement in America to speak more openly about mental health and hopefully it will be made more available to all families in this situation.”

In addition to mental health counseling, Erika talked about the support provided by Here to Serve organizing their family friends during their journey. The Care Community Here to Serve set up helped with all the things you just naturally do during a normal day: shopping, cooking, cleaning and laundry. Their community page also gave them a way to communicate Danielle’s progress, as well as provide a way for family, friends and the community to contribute financially through the family’s online giving site. Here to Serve also made every Christmas special not only for the kids but her and her husband by providing almost every gift on the wish list. Erika shared what a blessing it was not to have to deal with holiday shopping and wrapping gifts during those four years. 

What Sustained Them Through the Journey?

Erika feels that her faith in God during this difficult time was her rock. She writes beautifully about this in her journal during Danielle’s illness. As difficult as the initial diagnosis was, they felt a certain peace in their journey due to their trust in God and seeing that trust played out with the help her family received. Always very active in her church, she experienced incredible support from them and the wider Christian community through another local church.

The entire staff at Children’s Hospital was wonderful, professional and supportive. The kindness showed to Danielle was a blessing. Danielle still loves going to visit Children’s Hospital and seeing her nurses from that time. Erika laughed as she said, “It’s her safe place!”.

Throughout the journey Erika tried to see the positive, and found journaling helped keep her balanced. Writing about her emotions, anxiety, or Danielle’s medical treatment helped her process. She talked about how even now she has anxiety about Danielle’s health. An important day in every cancer patient’s journey is when they ring the bell to announce they are cancer free. Erika thought this action would bring relief, and of course it was a joyful day. At that moment though, she found herself becoming absurdly anxious with the realization that the hospital and the constant testing had served as a security blanket. Now the burden was squarely on their shoulders; the thought of missing a symptom was terrifying. She acknowledges what a huge, ongoing responsibility it is for parents of pediatric cancer patients. She finds meditation really helps to bring calm and remind her that Danielle is ok, she’s doing well.

The love they feel for each other as a family was also a strength that kept them going. Mid-way through the journey baby Landon joined the family, bringing joy and hope to all of them. Erika says, “While he may not remember it, he was along for the journey, spending much of his babyhood at Children’s Hospital with the rest of us. He really helped all of us, bringing a smile to our faces even during difficult times.”

Challenges Along the Way

Other than the obvious difficult diagnosis and treatments, I asked Erika what she found to be some of the biggest challenges.

• “Returning to school was a big emotional challenge, both academically and socially. Although Danielle is a social child, the school missed during her illness and her uncertainty about how she would perform caused an immense amount of anxiety.”
• “Not being there for Bre Although both Dan and her grandparents really stepped up and made sure she was cared for and loved, I couldn’t give her the same attention I gave before Danielle became ill. She still talks about it, and I still feel sad about what I missed in her life during that time.”
• “One of the biggest challenges is that you have no control. Your life, and your family’s life is thrown into an ongoing state of unpredictability. Just when you think you have managed to get your family back on a schedule something happens with your child’s condition and its chaos once again. The lesson of letting go is a hard one, which required much prayer and meditation for me.”

The Journey Brought Positive Changes Too

While cancer journeys are incredibly difficult, some parents say they there were also some positive life changes. For example, a deeper faith, being more open to accepting help, being grateful for the small things.

Erika shares, you need a lot of trust to endure this journey, with all the hills and valleys you travel through. Before the diagnosis, she feels she was always in a hurry: rushing to get the children up, dressed, to school, to an activity. Now, she’s grateful for the “little moments”, and the ordinary daily activities like breakfast, taking the children to school, family meals. Before she became ill, Danielle was in a cheerleading squad and loved to cartwheel, jump, and tumble. Now in middle school, Danielle is on the volleyball team. “I can’t tell you how emotional it was to see Danielle in that first volleyball game. When we first took her to Children’s Hospital, she could not walk, and spent so much time in therapy. She still has some residual health issues from the cancer treatments. Seeing her jump up and hit that ball was one of the biggest moments of my life. She’s a fighter, but a fighter with a generous smile and sunny personality.”

Wrap-Around Non-Medical Support Is Critical

Again, thank you to the Torres family for sharing their story. At Here to Serve we have over twelve years of experience providing non-medical wrap-around services to families during their cancer journeys. This gap in the healthcare system remains a critical need for families with children battling cancer. If you, or someone you know, has a child with cancer, please contact us through our Here to Serve Website. The services we offer include:

• Setting up a Care Community to organize:
  • Communicating updates on your child’s condition to your community.
  • Household help
  • Childcare
  • Meal delivery
  • Special occasions
  • Pet care
• An extensive archive of resources, which can be tailored to your specific needs including funding and travel resources, tax help, insurance advocates, and more.
• Create a targeted Go-fund Me page.

About the Author

Valerie Radford Cox has had a fulfilling career in the field of communications and institutional advancement. She is enjoying sharing her skills to provide information to the pediatric cancer community through the non-profit Here to Serve.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance. All photos in this article are from the Here to Serve archive or supplied by Erika Torres.