It’s a mother’s worst fear, and it happened to Lisa DeLong — twice.
The Canyon Country resident’s eldest son, Justin, was diagnosed with leukemia at age 5 in 1990.
Then the nightmare repeated itself in 2006 when her youngest son, Jacob, was 6.
“My husband called me and said the pediatrician wanted us to take Jacob to Children’s Hospital (Los Angeles) to be tested for leukemia. It could not register in my brain completely,” DeLong said. “I went outside and collapsed on the grass, sobbing. I thought, ‘Is this a joke? This cannot be happening again.’”
‘Blood Brothers’
DeLong recounts her alternately terrifying and transforming journey in her first book, “Blood Brothers: A Memoir of Faith and Loss While Raising Two Sons with Cancer” (
Buy online at Amazon.com).
The Santa Clarita chapter of The Compassionate Friends will host a reading and signing with DeLong at 7 p.m. Thursday, May 5, at Valley View School in Newhall.
According to DeLong, the writing process was comforting at a tumultuous time.
“I’ve been writing and journaling my whole adult life, just as therapy,” she said. “I took a writing class at
College of the Canyons and UCLA Writer’s Extension, where I wrote an essay, which turned out to be the beginning of my memoir.”
Seeing the finished book was very gratifying, DeLong said.
“I look at it as almost like one of my children,” she said. “When I held it in my hands the first time, I texted my husband:
‘The baby’s born.’”
From grief to purpose
Originally a maternity nurse, DeLong stopped working after Justin died of leukemia in 2000. She began attending support groups, and found herself drawn to bereaved families.
Three years later, ready to once again enter the workforce, DeLong was hired at the Michael Hoefflin Foundation, a Santa Clarita Valley-based nonprofit that serves families of children with cancer, as an outreach coordinator.
“I loved working in that environment; it gave my life and loss purpose,” she said.
During that time, DeLong also earned certification as a bereavement facilitator, and really found her niche.
“I’m not a therapist or a counselor. All I do is listen to people in a group setting and facilitate the conversation — to allow people to share their grief,” she said. “I like that role. It gave me a way to make sense of my life again — being able to have something to offer other people.”
She began facilitating groups at the foundation called Hope Hereafter, but gave up her job when leukemia once again entered her family’s life.
In 2006, at the age of 6, Jacob was in the fight of his life against acute lymphoblastic leukemia.
Jacob’s journey
Though it had been more than 15 years since Justin was diagnosed with the same disease, treatments hadn’t changed much.
“There were minor alterations in some of the dosages, but chemotherapies remain the same,” she said. “ALL is treated by long-term, hard chemotherapy. The kids you see that are bald, swollen, pale and frail are the ones going through high doses of chemotherapy.”
Unlike Justin, who responded well to treatment and remained in remission until his death at 15, Jacob nearly died within six months of the protocol after contracting hepatic veno-occlusive disease
“He was bleeding out of his gums, and was so swollen, he had difficulty breathing. A very low percentage of people survive VOD,” DeLong said.
Miraculously, Jacob did survive, and was discharged from the hospital days later.
He received maintenance levels of chemotherapy for three years in pill form every day, as well as intravenously several times a month.
Though it kept him alive, Jacob’s health continued to suffer from the side effects of the treatment.
“His immune system counts dropped all the time. We couldn’t have him in public; he caught colds so easily,” DeLong said. “We had him in the (emergency room) over 20 times with fevers, bloody noses and infections. We were like, ‘Man, couldn’t it be easier the second time around?’”
Surviving
Because of the continued illnesses, Jacob had a hard time concentrating in public school.
“He couldn’t retain information and was exhausted trying to keep the pace,” DeLong said. “I home-schooled Jacob until this January.”
At age 11, Jacob has been off of chemotherapy for a year and is now a fifth-grader at Sulphur Springs Community School in Canyon Country.
His older sisters, Jessica, 22, and Joelle, 17, a senior at Canyon High School were instrumental in helping Jacob and the family survive through the ordeal, according to DeLong.
“They are amazing, I’m so proud of my girls,” she said.
DeLong plans to enlist her daughter’s help in writing “
Blood Sisters,” the sequel to “Blood Brothers,” which will feature their reactions to the scenarios that unfolded within the family during its health crises.
“They will fill in the gaps as siblings. Siblings need to be given a voice. They are they silent sufferers of illness and loss,” DeLong. “I am so excited about this.”
Compassionate friends
Until then, DeLong is also excited about her upcoming signing with The Compassionate Friends, which hosts the first support group she ever attended. DeLong had just returned from the City of Hope, numb from the experience of losing Jacob.
“Diane, the founder of The Compassionate Friends, just hugged me and didn’t let me go. She understood,” DeLong said.
While she felt the need to share and hear stories about loss and realize that she wasn’t the only mother living with the loss of a child, DeLong acknowledged that not every parent feels the same way.
“A lot of parents who lose a child isolate. I want ‘Blood Brothers’ to be support for people who can’t or won’t get themselves to a group,” she said. “The beautiful thing about a book is that you can react to it alone. You can scream, cry or throw it out the window in privacy.”
Monday, October 3, 2011 at 6:07PM 
Losing a loved one can be an intensely isolating experience. At times you may feel as if you are the only person who has ever known such anguish. Helping you find hope again is our mission in Open to Hope: Inspirational Stories of Healing After Loss. Whether your loved one died last week or last decade, we know you can benefit from the wisdom of those who have negotiated the long days and nights of the grief journey. Compiled in this book are entries written by more than one hundred contributors to the Open To Hope Foundation's website. By reading about their experiences, may you find similar paths to healing. It is our heartfelt hope that as you read, you will think, "If they can make it, so can I." We too have grieved deeply and know what it's like to experience dark days with no light to lead us. Whenever you run out of hope and can't find the light to guide you, we invite you to lean on our hope until you find your own.