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.’”
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” (Tate Publishing, $19.99, set for national release July 5).
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.
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?’”
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.”
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.”
Lisa DeLong, a registered nurse and certified bereavement facilitator, lives with her husband, two teenage daughters, and nine year old son in Southern California. Justin, her first son, died at the age of fifteen as a result of leukemia in 2000. Her youngest son, Jacob, diagnosed with leukemia in 2006 has been in remission from leukemia for almost two years and continues with maintenance treatments. Her children continue to teach her life’s greatest lessons and give her insights on having joy in the midst of grief.
It’s a mother’s worst fear, and it happened to Lisa DeLong — twice.
By Lisa Solis DeLong
In the middle of the meat section at Costco, as I lifted a twelve pack of sirloin patties for Jacob’s birthday barbeque dinner, it hit me: Jacob is growing up. I felt teary and stood still for a moment of silent gratitude as thoughts of Justin, my oldest, pushed past my memory like overloaded shopping carts. Having had two sons with the same disease, one gone and one living, always weighs heavy around birthday celebrations.
As I returned to my shopping, I recalled how Jacob was crying the other night. I sat next to him on his bed, stroking his forehead, rubbing his back, laying down, listening, he continued to cry and speak in unrecognizable language. He gets like this when he is sad; soft spoken, whiny.
After crying for about an hour he finally spoke the words reflecting what was at the root of the emotion: “I think I’m losing my, my i-ma-gin-a-tion.” He choked the word out like he was coughing up blood, which he has done several times.
“I don’t want to grow up…Why do I have to get big and hairy?...I’m going to be bald like grandpa cuz that comes from your side mom….Why do I like war games so much? I’m afraid I won’t like playing Legos anymore…”
I snuggled close to him and put my arms around him and looked around his room. A giant stuffed catfish pillow hung overhead. His enormous tarantula spider in the glass case clung to the wall near his feet. A pile of plush toys: a fuzzy brown bear, a green snake and Chief Joe—a turtle in camouflage, fill one corner of his room. Legos were strewn across the floor in an almost complete World War II reenactment. A newly framed poster of every kind of airplane known to man and boy leans on its side waiting to be hung.
And there we were; a mother so thoroughly immersed in the joy of holding her almost eleven year old son in her arms and a boy completely aware that he is becoming a man.
He was not thinking that the only way to prevent aging is to stop living which is exactly what was in my head. I’ve already buried one son. Justin is perpetually fifteen in my imagination. That’s as far as we got.
Jacob did not know that every minute of every day with him and his sisters is what kept me going when Justin left. You get used to having your kid around and when they are gone you shut down until something forces you to turn on again. In my case that something was him. He was only nine months old when Justin died.
He was not thinking about four years ago when he nearly died too from leukemia treatments just as his older brother had. He does not know what I know: that his getting big and hairy is one of life’s greatest pleasures; maybe not for him yet but certainly for me now. Moments like these are what make me cringe and hold him tighter not knowing whether I will out live him or him me.
As a young nurse, I saw children suffering. The first one I remember was a little blonde haired girl about the age of five. She lay in the hospital bed staring. Her parents wiped ointment on her lips and a respirator did her breathing.
She had gone into the family’s garage and a motorcycle fell on her.
It was a tragedy beyond what I had ever experienced in my twenty one years of age. I observed her parents, at her side. She was so beautiful. They were so present.
The next was a little boy, African American, age two. He had been stabbed multiple times and disemboweled by his drug frenzied father. As he slept I wondered what he was thinking.
What do these kind of children think about their circumstances?
When it was my son, Justin, who was diagnosed with leukemia at the age of five, I sort of felt prepared for it. This does not mean I wasn’t shocked and shaken to my core. It was more--a flashback--to a moment when he was a newborn and I was alone with him for the first time and I felt an overwhelming sense of sadness as I stared at his deep gray eyes. I knew something tragic was going to happen to him but dismissed it as hormones.
When leukemia came into our lives, I thought ah ha, this is it.
When Justin survived and thrived and was in remission for ten years I thought that we had lived our tragedy and that the worst was over. I didn’t know other wise.
When he relapsed and died suddenly at the age of fifteen; that is when I knew tragedy.
But, it is also when I began to learn about Justin’s role in it all. He was so poised; so unflappable; so accepting of the whole process. Yes, he cried and asked questions but there was a peace about him—unexplainable. Even at the end when he comforted us with his last words, “It’s not that bad.”
When Jacob, my youngest, was born, Justin was healthy. Nine months later Justin died.
After his death, I thought, I don’t want to love another little boy.
But, of course, Jacob was irresistible. His sisters, who were book ended by their brothers, loved him so.
None of us could see it coming, but at the age of six, Jacob was diagnosed with leukemia too. Even though it was a non-familial cancer, it happened. Jacob had already taught me that he had a special connection with the brother he never knew. What can brothers, who only shared space on planet earth for nine months possibly, share?
Once, when Jacob was three, he pulled me so hard I almost fell over. “What do you want? Why are you pulling me?” I asked impatiently.
“I want to see my brudder,” Jacob said in his three year old voice.
“What do you mean?” I asked, squatting down to eye level.
“Up dhere,” he said, pointing to a press booth in the stadium we were in.
I looked up and saw nothing.
“Up dhere! I want to go see my brudder, JD. Up dere,” he persisted.
I stopped. Still seeing nothing, I let him walk closer and look. Which he did until he decided it was enough and then he turned around and didn’t ask anymore.
I tried to get more out of him, but the moment passed.
Three years later, while he was on chemotherapy, the episodes began again. This time they were more intense. “I want to be like JD,” Jacob would cry. “JD is all light and I am only half light and half darkness.”
I would hold him and let him cry as long as he needed. I had learned to listen. Not to explain. Besides, I had little to offer compared to him.
Children don’t always need answers.
Very often they have more to teach us than we them.
I had no explanation beyond what I could see. I believed in Christ. I believed in heaven. I believed in God’s plan but I had never given thought about how my children were prepared for their tasks, born knowing some of what was planned for them, because perhaps, they helped figure it out before they got here. My boys taught me this. Other children taught me this too. The ones I’d met through cancer: Elizabeth and David and so many others.
I don’t look at sick people, dying people, with pity anymore. I look at them with awe. Whatever they are enduring, I believe, is because something in them knows it will benefit those around them--benefit us. I intend to learn all that I can from these most brave and courageous teachers.
One year when the kids were little, my dad built an intricate, delicate doll house for my older daughter, Jessica--a three story Victorian, with a sharply pitched wood shingle roof, wide front porch and an enchanting attic. A few years later he made one for my younger daughter, Jojo, too. Hers was more rustic, a simple log cabin with a faux river rock fireplace and a spacious upstairs loft, perfect for bedroom and bath. The girls played with their “Grandpa Houses” for hours when they were young, but like most childhood toys, the houses were relinquished to the garage as their rooms became so full of teenage stuff that the doll houses no longer fit. There they sat, hidden behind an old drum set, bins of Playmobil toys, and grandma’s tea cart left over from bygone days of independent living.
The real house, the one we live in, is usually a mess this time of year with the clutter of day-to-day living in a household of five people on winter break with two dogs, two cats and a pet rat. This year, the house is decorated poorly for Christmas. I have not been able to motivate myself enough to climb up to the garage rafters and pull out the tree ornaments, garlands and lights I have displayed in the past. It seems my energies are more focused on preparing to have my mom and dad move from Texas to California in a few weeks, as dad has been diagnosed with metastasized prostate cancer and mom with dementia. I have wanted to live close to them for years and I am distracted at the thought of living down the street from them for the first time in my twenty five years of married life. Even with the happiness I feel at the thought of them moving near, it seems my old friend grief has still managed to visit me as he usually does this time of year and I find it difficult to see all the ornaments from what I call my “first life”--when Justin, my firstborn child, was little and life seemed simple. Since his passing as a result of leukemia in 2000 at the age of fifteen, I find it easier to decorate the tree with a new theme every year, thus avoiding the handmade felt wreath ornament with his third grade picture in the center. I’d hoped that this year’s “all- edible decorations” tree would be fun, but it turned out to be rather funky with its “JOY” marshmallows and mismatched candy canes spattered here and there.
Jacob, my second son and the youngest in the family, was wondering if we were even going to celebrate Christmas this year. He has also been diagnosed with leukemia, and is in remission but still on treatment. As I stood there looking at the pathetic little tree, my head tilted sideways, weighted by the long Christmas to-do list we mothers dwell on, Jacob talked me into creating a Christmas scene using a bag full of different sized miniature snow dusted pine trees he’d seen at the craft store. Not completely convinced this was a good idea but feeling a spark of Christmas cheer at the thought of doing something special for him, I agreed and had the idea to bring the doll houses in from the garage to go along with the tiny trees. Freeing the houses from their less-than-dignified position under an old dusty bed sheet, tickled my inner Christmas child, but meant I’d have to give them some much needed TLC.
The girls, now nineteen and fifteen, had not played house in a very long time and in fact it was Jacob who last spent time playing with them enough to break them. The log house took the most abuse as he seemed to like that one best, but now at the age of nine, the idea of decorating the “Grandpa Houses” for Christmas lit him up too, so we worked together to repair the damage once done by tiny fingers and over-zealous furniture arrangers.
Dad was never one to spoil the grandkids; he and mom started giving them money for their savings as their Christmas gifts a long time ago, practical people they are. It was really very un-dad-like to give them such lavish doll houses back then but he enjoyed working with his hands and I think he enjoyed being able to give them something of himself.
I am thankful that he did. As I pulled the doll houses out, I was surprised that I had the foresight to save most of the little wooden pieces which had broken off. I remembered finding them on the floor back then and contemplating throwing them away as the pile of Polly Pocket accessories mingled with Lincoln Logs and the chaos grew out of control and I felt like ditching everything. But each time I held one of those broken pieces in my hand I would picture my bald little dad in his workshop/garage patiently gluing each one delicately in place, holding it until the wet glue dried and so I didn’t have the heart to toss it. After gluing the one-and two inch railing pieces back on the log home myself, Jacob and I delicately layered white batting on the roof tops and around the front “yards.” we added lights and created an instant winter wonderland. “Ahhh Christmas has arrived,” I thought, as the “Grandpa Houses” sparkled magically with the little people placed inside, sitting at tiny tables and lying on cozy cardboard beds, Santa and his reindeer ready to make his delivery, perched on the “snow”-covered roof tops.
The other night my husband went to bed after a long day of coaching and teaching, Jacob took his night time chemo pills and Jojo went to bed exhausted from a tough basketball practice. Jessica was still out and I found myself in a rare moment of silence, so I stayed up and played quiet music, picked up the day’s warn shoes, folded some warm laundry, and swept up the pine needles which had fallen from the tree. The air was chilly but the doll houses sparkled warmly. They looked spectacularly festive. It is in moments of recognizing stunning loveliness that the stinging pain of dealing with so many cancer experiences blend and I wish that Christmas didn’t have to come with such conflicting, difficult emotions. It isn’t right that happiness should hurt but sometimes in the quiet stillness of the holiday season, memories surface, and it does. Life is like that—a blend of good and bad, of highs and lows.
The houses have become my heart’s fondest decorations for Christmas and now when I am feeling too tired, too torn up to celebrate, I look at those glistening doll houses and I feel a spark, think of my dad. And like the tiny rungs of the railing on the well- loved log doll house, I realize that there always comes a time to restore that which is worth restoring. That is Christmas.
The thought of Justin dying hovered around my thoughts continually while he was on chemo for leukemia, not only because the leukemia could kill him but so could the treatment. When he was first diagnosed in 1990, the thought of having any kind of joyful existence if he did die--was impossible for me to imagine. When our kids are alive we hope for everything and anything: winning first prize in a drawing contest, finishing a cross country running race, attending a cousin’s wedding, eating a healthy lunch. Their experiences bring us joy. The most trivial and the most important life events are always wrapped in hope when you live with death peaking over the picket fence for so long.
When Justin died suddenly, as a result of treatment in 2000, the reality of living without him meant the loss of future thinking. Thus came a period of time where I lived with the loss of hope. Isn’t that what hope is--future? Without him physically here anymore what good is hope? Who needs it once the fight is over? If I’d had time to prepare for his death, I would have hoped for as little physical pain as possible for him; for everything ever wanted to be said to be said; and for the end to come quickly and without terror. Ultimately, it did happen that way for Justin--in a day, not weeks or months.
When my youngest child, Jacob, was diagnosed with leukemia in 2006, the hope of ever having an adult son looked bleak as the reality of what we had to go through—again—hit hard!!! So what does hope look like now? It is present, in the moment, togetherness. Hope comes whether I want it to or not. I hope for him to have a healthy long life, even though I know the chances of him dying before I do are pretty high. I hope for my daughters, who have endured too much loss already, to be wise and healthy minded human beings as they continue to find joy in their lives and are now. I hope for Jacob to be ten, eleven, twelve; I hope that he stays creative and insightful and that someday he’ll have a beard, yes, a beard would suit him so well.
When you know your child is going to die you hope you will die too. When that doesn’t happen you hope something significant will happen with their life’s memory even though their gone. That’s what gives us work to do and gets us out of bed in the morning.
When you know your child might die—again--you hope that every day will have at least one moment that will light up his eyes and make him smile like there’s no tomorrow.