Author: Marilyn Luce Robertson

I am a mother and professional writer who, on October 20, 2014, became a cancer mommy when my 5 year old son was diagnosed with Acute Lymphoblastic Leukemia. It is my hope to create a positive, encouraging environment where other cancer mommies can share and grow in grace while we journey together.

The Art of “B”-ing

IMG_0023[1]Today is the 24th birthday of a very special young lady named Brittany, or B for short.

I became friends with B’s parents back in college. I had the honor of standing as a bridesmaid in their wedding, of attending a shower celebrating the highly anticipated arrival of their first and only child, and of visiting that sweet baby in the NICU. Born 2 months premature, she was so small. But, her eyes. Even as a baby, her dark, beautiful eyes seemed to see through me — beyond my flesh and bone, down into my soul.

 

IMG_0026[1]

Brittany with her parents, Melanie and TJ.

She enjoyed activities that most kids do — family vacations to the beach, fishing, and playing her favorite online video game with her parents and friends.

 

Brittany, or B, has often been described as being an Old Soul — a caring and compassionate girl who was wise beyond her years and always thinking of others. She had a disarming calm about her that instantly put a person at ease, was clever, and saw things in this world with those endless eyes that many of us miss.

In junior high, she would ask her mother for extra money so she could eat breakfast at school. But, she was actually using the money to buy lunch for a friend who couldn’t afford it. When she found out a neighbor’s daughter wasn’t being treated right at home, she asked her parents if they could take the girl into their own home. She lovingly helped friends through physical and emotional struggles by offering a listening ear, a strong shoulder, and a sincere heart. Unsurprisingly, she wanted to become a psychologist.

IMG_0015[1]

“She always looked at people without judgement — offering to help.”

She was internally motivated to be the best she could be and, in turn, she was able to have a positive effect on those she interacted with. She wanted the world to be at peace—for us all to coexist in peace.

A few years ago, on an unassuming October Sunday, Brittany had seemed fine all day, but her mother noticed that she didn’t have much of an appetite at dinner. By evening, B had developed a fever and sore throat. Her parents gave her Tylenol, planning to make a doctor’s appointment for her the next day if she wasn’t feeling better.

The next day, she was fever-free, but her parents decided to make the appointment anyway in case she had Strep.

Her appointment was for the next morning at 8:30 am.

That night, she pointed out a bruise on her thigh to her mother. Brittany couldn’t recall how she’d gotten it. Her mom, thinking Brittany was anemic, went to the store for iron pills and freezer cups.

Brittany and her mom spent the rest of the evening laughing, joking, and talking in B’s room. Neither of them knew that it was the last night they would spend together. Brittany never made it to her appointment. She had passed away during the night, and it would be 3 long, torturous months before her parents would learn what had stolen their 17-year-old daughter from them.

Cancer.

Acute Promyelocytic Leukemia (APL), a rare and fast-moving blood cancer, had secretly and silently taken her life in a matter of days. An oncologist assured her parents that her passing was swift, and that she had felt no pain, but their mother and father hearts were broken in unfathomable grief.

Today, on her birthday, we remember Brittany—delightful, intelligent, witty, beautiful Brittany. We miss her. We remember her joy and light. We wonder at the woman she would have become.

IMG_0412[1]

“She got the meaning of life at such a young age and knew that giving and loving others was what life meant to her.”

As a teenaged girl, she had cared for others and put her compassion into action on a daily basis. Although she planned on a future in service to others, she hadn’t waited until she grew up to start changing the world around her. She took opportunities as they came—always touching lives for the better and demonstrating the art of B-ing—leaving each of us who knew her better than she found us.

Cancer can’t change who Brittany was, or diminish the love she left behind. Her love is her legacy, and her spirit calls to us, even now, to B more than we have been.

B more present. B more aware. B more kind. B more loving. B more generous.

To B her legacy.

 

 

 

 

Advertisements

52 Weeks

FullSizeRender (1)52 weeks from today, my little boy Cub will be sitting bare-chested in a vinyl therapy chair. He and I will put on little yellow masks as a clinic nurse opens a sterile packet containing gloves, cleanser, and a 3/4 inch needle with a tail made of narrow plastic tubing.

He’ll squirm while she wipes off the numbing cream I applied to his skin before we left home.

He’ll whimper as she scrubs his skin — skin chemo has left raw and neuropathic.

After the cleanser dries, he’ll straighten his back and jut out his chest while holding a raggedy little stuffed elephant in his lap. “Don’t count! Don’t count!” he’ll say anxiously as the nurse brings the needle close.

“Okay, I won’t count,” she’ll say, pushing the length of the access needle through his skin and into the silicone medium of his titanium port.

She’ll draw a tube of blood. Waste.

She’ll draw another tube of blood. Labs.

She’ll flush the line while Cub sucks apple juice through a straw because he can taste the saline rushing into his bloodstream. Taster.

We’ll spend a few hours waiting for his chemo to be prepared and delivered, and after another flush and more juice, the chemo will be introduced to Cub’s line, beginning its slow drip down and around several feet of tubing into his little body.

We’ve done this before.

On this day, my son will have been receiving chemotherapy for over 2 1/2 years.

It’s not his first chemotherapy treatment, but on this day 52 weeks from now, it will be his last. He will ring the bell victoriously, and we will spend the rest of our lives celebrating every little thing.

52 weeks from today, and my mommy heart can hardly wait.

 

 

 

 

 

 

.

 

The Day My Son’s Cancer Cure Almost Took His Life

On the morning of April 16, 2015, I thought that the worst day of my life was behind me. I couldn’t imagine anything worse than finding out 6 months before that Cub, my 5-year-old son and only child, had cancer. But I was wrong.

That evening, during dinner, he began having seizures and fell unconscious. I called 911 and in the few minutes that filled the space before the paramedics arrived, my heart sank with new fears. Cub had never had seizures before, and my mother’s heart knew that the evils of childhood cancer had even darker depths than we had yet experienced.

Once in the ER, the medical staff quickly accessed Cub’s port, drew labs, and hooked him up to fluids. He had seized 3 more times and there was evidence of internal bleeding. They sedated him for an emergency CAT scan, and the results showed bleeding on the brain. My precious little boy, now 6-years-old, had had a stroke.

20150417_064154.jpg

Further testing, including an MRI in the middle of the night, would reveal that there was also a clot in the Superior Sagittal Sinus of his brain. After lengthy consultations between his expert Oncology team at a renowned children’s hospital and the Vascular and Neurology teams at our local hospital, it was determined that Cub had experienced an extremely rare reaction to one of his chemotherapy medications called L-Asparaginase. It was known to cause, on rare occasions, bleeding or clotting. But in his case, it had become a “perfect storm” of sorts, and caused both.

Cub was sedated, placed on a ventilator, and hooked up to an EEG. He had around-the-clock care and observation with a nurse and mother who never left his side. I was warned that, if he regained consciousness, he might not be the same little boy who went to sleep 24 hours before. He might not smile. He might not tell jokes. Run. Play. Or speak. The last words I may have ever heard him say were, “This is so hard!” as he struggled to look at me while violently seizing one more time before his sedative took over his little body.

While they slowly brought him out of sedation, I steeled myself against the negative “what if’s.” I prayed, took cleansing breaths, and determined that no matter what, we would still share the love we had always had, and that I was going to do everything in my power to give my son the best life possible – no matter what that was going to look like when he woke up.

As my son began to regain consciousness, he crossed one foot over the other. 20150417_153457I squealed with happiness, smiled with the nurse and took a picture with my cell phone, updating family and friends of his progress. It was the first time he had moved since being sedated. A few hours later, he moved his lips around the thick tubing running down his throat, taped against his skin to keep it in place. He was mouthing “mommy.”

The first words he spoke aloud after the tubing was removed formed a complete, complex sentence. I was filled with a rush of joy and relief like I had never known. Within hours, veteran nurses were calling him “the miracle boy.” It was determined that he had no cognitive damage whatsoever. There was some damage to gross and fine motor skills, and a year later, he is still in physical therapy. But, he is expected to eventually make a full recovery.

While this is wonderful news, we must remember that my son had cancer, not vascular disease. We must remember that the medicines given him to treat this cancer were designed for adults. We must remember that the medicine meant to save his life by killing his cancer almost took his life by causing a catastrophic stroke in a 6-year-old.

My son is recovering from his stroke, and I rejoice in that every day. 20141127_121727But. Wouldn’t it be wonderful if children could be healed of their cancer without possibly sacrificing their ability to walk, to speak, to learn, or even to breathe on their own?

Wouldn’t it be wonderful if the treatment of pediatric cancer was more of a priority than it has been – with children having specialized treatments tailored to their individual needs rather than outdated medicines designed for adults? Wouldn’t it be wonderful if the cure wasn’t as dangerous as the disease?

I believe that CancerMoonshot 2020 is going to help that happen. With a vision for bringing immunotherapy to children across the nation, they will not only be saving children’s lives, but their futures – more laughter, more running and playing, more growing, and more life. Now that is a vision worth fighting for.

What we Leave Behind

luceleaf journal

20140714_095551In the past, my mother had expressed concern over what she had to leave for her children. I remember her being disappointed that she didn’t have a lot of “valuables” to pass on, or a large inheritance to divide amongst her children, grandchildren, and great-grandchildren.

I would try to reassure her with words like, “Don’t worry mom, you’ve done so much already.” Or, “Mom, that’s not what matters.”

Still, for my generous mother who was a child of the depression, she was worried about supplying our needs far into the future – a future that she would not be able to reach into to help solve our problems.

My mother had known depths of need in her life that most of us are never burdened with experiencing. And she survived. And she made sure we did, too. It may not have always been fun, and it most definitely may not…

View original post 406 more words

Heartbeat

FullSizeRender

A small crystal clock that once belonged to my mother sits on my nightstand. One classy thing amongst my scattered clutter — 16 books, 2 hair clips, my son’s Legos, and a winged Skylander.

But.

When the world is quiet.

When I’m quiet.

I hear the tick tock beat of time slow and steady.

Her clock. From her nightstand.

Now mine.

In the quiet, she speaks to me of time and timelessness.

Tick Tock

Tick Tock

I’m still here with you.

When I lay in the stillness of night, I imagine her listening to the same the tick tock beat,  and wonder what she thought about.

Then I realize that, at least sometimes, it would have been me.

And I smile.

Thinking of her thinking of me.

Tick Tock

Tick Tock

 

 

 

Choosing Joy

This close to Christmas, we all need to remember to CHOOSE JOY! 🙂

JoyGurls

4296_1137223503777_70674_nWe all have “bad” days now and then, right? Perhaps you’re having one today – maybe you’ve locked your keys in the car, spilled your once-a-week mocha treat down your blouse minutes before “the big meeting,” or, in the rush of a hectic morning, forgot to pack little Joey’s lunch.

You roll your eyes, heave a sigh, and maybe even let out a little chuckle, and you keep moving. At some point later in your day, you open up Facebook and inevitably scroll down to a cute little kitten meme with some profound words of wisdom sprawled across it’s fuzzy little body in a sickeningly cute little font. And you laugh in spite of yourself and your “bad” day. We’ve all been there, right?

But, today, I want to talk to you about the really bad “bad” days. You know, the ones that leave us with little, if any, joy…

View original post 356 more words