Inspiration

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.

 

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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.

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“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.

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“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.

 

 

 

 

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.

 

 

 

 

 

 

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Heartbeat

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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

 

 

 

6 Things I Learned My First Year as a Cancer Mommy

Cub at age 5, October 16, 2014 -- 4 days before his diagnosis.

Cub at age 5, October 16, 2014 — 4 days before his diagnosis.

Over the past year, I haven’t allowed myself to look back very often. When Cub was diagnosed with Acute Lymphoblastic Leukemia, I made a commitment to moving us forward, with our eyes on the prize of completing treatments and Cub once again being a healthy, happy little boy.

Today is the one year anniversary of his diagnosis, and in order to properly acknowledge the progress we’ve made, I’ve had to force myself to look back over what was inarguably the worst year of our lives.

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Cub doing some schoolwork while inpatient for a fever.

We experienced the emotional devastation of his initial diagnosis; being whisked away to Memphis for 6 1/2 weeks of Induction chemotherapy; a high fever that wouldn’t go away; being in isolation for 5 of those weeks; my baby losing his hair; watching him have numerous surgical procedures and enduring the pain of endless pokes and port accesses; my training to administer antibiotics through his port when we were alone in housing; the grocery bags of medication and supplies that I organized in the drawers of our housing dresser; having security deliver all our meals once we were placed in housing after 10 days in-patient because we were in isolation; Cub not getting to see or play with any other children; the exhaustion and loneliness;  and the weakness and incessant nausea caused by the medicines that were saving his life. The wonderful staff at St. Jude promised me it would get better, and it did. On December 8th — one day after my birthday — we found out he was in remission. It was time for him to move forward into the Consolidation chemo phase, and for us to go home.

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Cub and his bag of fluids, “Mr. Peabody.”

The Consolidation phase was tough — lots of nausea, new meds, and frequent 5-hour trips to Memphis where we would check into the Medicine Room of an evening to have Cub’s port accessed, labs drawn, and get a large bag of fluids attached. We decided to name our bag, as it would come with a portable monitor and shoulder strap. It would go back to the housing room with us, and it was quite heavy. Cub couldn’t lift it himself, so I carried it for him, and we went everywhere in tandem. We named his bags — alternating between Sherman and Mr. Peabody. He had to have the fluid in order to help his body properly flush the chemo treatments, and he would have to take a “rescue” drug afterwards in order to protect his organs from failing. He would always get nauseated on the windy Arkansas roads we took to get back home, but he never complained.

A few months — and several floor mats — later, we completed Consolidation, and Cub graduated to the final phase of chemo: Maintenance. I foolishly thought that this would be 120 weeks worth of a downhill slide. We would be going to Memphis less frequently, and get 3 out of 4 of Cub’s weekly chemo infusions at our local affiliate. Several weeks into Maintenance, Cub was scheduled for what’s called Reinduction — where his body is revisited by the early chemos of Induction. He was to have two reinductions. But, Cub had a rare side effect from a med called L-Asparaginase (we call it “asparagus”), and it caused him to have a stroke. Did you know 6-year olds could have a stroke?

That was the most terrifying experience of my life. The L-asparaginase can make the blood have more of a tendency to clot, or it can make the blood have more of a tendency to not clot. In Cub’s little body, it increased the tendency for BOTH. Cub developed an inoperable clot in his brain AND bleeding from blood vessels in his brain, but through God’s grace and the wisdom and experience of some very talented medical teams, he survived with no cognitive damage and minimal physical issues from which they expect him to fully recover. And, because he is considered low risk, his primary St. Jude physician was able to cancel the second reinduction, so Cub never has to take L-Asparaginase again.

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Cub enjoying an ice cream at St. Jude’s after an inpatient procedure.

Today, one year after diagnosis, we are 40 weeks into the last phase of chemo, with 80 weeks left. Cub has on average 2 physical therapy treatments per week, 2 occupational therapy treatments per week, one clinic appointment per week where he has labs drawn and receives a chemo infusion. He takes anywhere from 15-30 doses of medicine per day, depending on his treatment plan for the week, including 2 blood thinner injections that he will be taking until the brain clot is gone. We go to St. Jude once a  month for a spinal procedure wherein he is put to sleep and chemo is injected into his spinal fluid so it can wash his brain to prevent leukemia cells from developing there. In a few months, these trips will go down to once every 16 weeks or so.

This last year hasn’t been horrible, or lost time. It’s just been hard, and this Cancer Mommy has learned a lot about life, love, and motherhood. One day, this will all be behind us — everything but the lessons we’ve learned along the way.

Here are just a few of the many sweet lessons that swirl in my heart everyday. I picked six because Cub is six 🙂

  • I have survived the realization of some of my very worst fears, and come out stronger, braver, and yes — even happier. There is joy to be found in every circumstance — seek it out, embrace it, and let it empower you.
  • Every day, I sit in awe of my little boy — he has endured more in the past year than most of us will in a lifetime, yet he remains compassionate, creative, humorous, loving and joyful. Circumstances don’t define you – you define them.
  • Not everyone is able to walk this journey with us — it might be too much emotionally, or they have other things going on, etc. But, we have been embraced by SO MANY people who love us, walk beside us, send us encouragement and lift us up in prayer. Our darkest days inspire others to shine and share their light.
  • Life radically changed for us one year ago today, and at some point early on, I had to accept that. My work, my plans, my time and expectations are all now dictated by a medical protocol and all the unexpected things that accompany it. Be honest with yourself about what you can and cannot do – recognize your limitations, but don’t sell yourself short. Accept your reality and do your best with what you have every day.
  • We are traveling a long road to healing. Sometimes it’s exhausting. The Cancer Mommy can’t afford to get sick and run down. I’ve learned that even five or ten minutes of self care make a real difference in my personal well-being. Take a walk, get your favorite drink and sit on the porch, read a few pages of a book or magazine, or go lay on your bed with the timer set for 5 minutes. You have to take care of yourself in order to take care of those you love.
  • When our child is facing a life-threatening illness, our instinct is to dig in and sit vigil over them — to prepare for battle with all the focus and force of a mother protecting her young. And this is a good thing. But, we have to remember that he or she is a child, and this war is set against the backdrop of their childhood. Don’t let cancer take your son or daughter’s childhood — make an effort to let them experience the magic and wonder inherent to their little beings.

No Picking at Your Past

3863_1140532066489_4079474_nNight before last, I slept in a bed for the second time in two weeks. My son, Cub, whose leukemia is currently in remission, has been in the hospital for 13 days with a fever caused by a random spore that “thrives in the Mississippi and Ohio River Valleys.”

When I woke up, I felt refreshed, and hopeful. We had finally, after more than a week of spiking fevers, discovered the cause, and were applying the cure. Cub will get to come home soon, and things will get back to our new normal. But, something didn’t seem quite right with my idyllic musings. My face hurt. More accurately, my chin hurt.

My gingerly exploring fingertips were met with an angry hot protrusion. A blemish. A big blemish.

I groaned. What am I? Fourteen again? Sigh.

Before I even got out of bed, my mind was flooded with memories – awkward memories of braces and boys, misery and missed opportunities, layers of embarrassment over family secrets and a negative-on-the-number-line low self-esteem. Blemishes.

Have you noticed that your past seems to pick the most vulnerable times to pop up in your life? Like, when your child is sick, or you have money problems, or relationship issues?

God’s Word says, “Do not call to mind the former things, Or ponder things of the past. Behold, I will do something new, Now it will spring forth; Will you not be aware of it? I will even make a roadway in the wilderness, rivers in the desert.” Isaiah 43:18-19

When your past rises up and tries to drag you back to places you’ve outgrown and overcome, don’t go. Turn instead toward the new path. God promises to make your direction clear in the confusion of the wilderness, and to refresh and sustain you in the draining isolation of the desert.

Your now and your future need your full attention. Leave your past in the past. You don’t need it anymore, dear hearts. ❤

That Time I Broke Down

10689854_333889466781873_2909414857651312247_nThe ride to Memphis took almost exactly 5 hours. We left at 7:00 in the morning, and I was exhausted and numb.

At first, Cub watched the receding traffic out the back windows, took stock of the various medical equipment stowed away in see-through cubby holes, and laughed at the funny sounds the tires made on the changing road surfaces.

And, at first, all I could do was watch him. I soaked him in as if I was a dry, crusty sponge desperate for the waters of life.

Eventually, he fell asleep, and a member of the EMT transport team asked me if I’d ever been to Memphis.

“No.” I smiled, dragging myself to the surface for a little small talk – wanting to be polite. These men were working a double shift to get my son to St. Jude’s as soon as possible.

As we chatted, he told me he was a Memphis native. He had traveled a bit, but always came back home. He told me the mystery of Beal Street and told me the best place in town to listen to the Blues, if I ever got the chance. Then he started telling me about St. Jude.

He told me how they only have about 100 in-patient beds. He told me how he was amazed that we were getting in less than 24 hours after diagnosis. He told me how it was the best hospital in the world for “what your boy has.”

His words spoke hope to my aching heart. Suddenly, we couldn’t get there fast enough. I wanted to just get started – to have someone, an expert, tell me what I needed to do to make my son healthy, and then do it.

When we drove across the bridge that turns Arkansas into Tennessee, I couldn’t see a thing in front of us. I could only see what we were leaving behind.

We arrived at St. Jude’s, and were unloaded into an isolation area that seemed so foreign, even though in the last 5 weeks, it has become a second home. We were embraced with kindness from the cleaning lady to the head nurse to the flurry of Specialists, Residents and Fellows we saw in those first hours.

A Fellow came in and explained that he was sure that the next day’s bone marrow test would show that Cub has Acute Lymphoblastic Leukemia, or ALL. He said that what they didn’t yet know was if it was T-Cell or B-Cell. He also said that Cub had the most common kind of childhood Leukemia, and the one with the best cure rate: 90%.

90%? The doctor in Springfield had said 96%. No. We NEED that extra 6%.

I nodded my head a lot. I said, “Okay, okay,” a lot.

I signed the necessary paperwork.

A nurse showed me around the floor a bit while Cub was having his vitals taken. Again.

She showed me the community shower for the parents, and the washer and dryer for the parents. She showed me the nourishment room where I could go to get Cub an apple juice or graham crackers to help settle his stomach in the middle of the night.

I nodded my head a lot. I said, “Okay, okay,” a lot.

Then she asked if I had any other questions.

I struggled to keep my composure and said something like, “The only other real question I have is how do I make sure he’s in that 90%? He has to be in that 90%.”

She put her hand on my shoulder and said, “He will be. He WILL. The cure rate is more than 90%. You’ll see. And right now, the best thing you can do is be strong for him because he’s going to be looking to you to know that he’s going to be okay.”

I nodded my head and said okay.

A few minutes later, I stole a moment of privacy to call one of my friends.

“What do I do? I can’t guarantee anything! I can’t make sure that he’s going to be okay! How do I do that for three years without knowing he’s going to be okay?”

I was panicked. In tears. And terrified.

My friend said something like,” He will be, Marilyn. He will be okay. And think of this. What do you want these three years to be like for him? And for you? Do you want to get to the end of these three years, and he’s fine, and they were filled with fear for nothing? What do you want to see when you look back? What do you want him to see?”

Boom.

The answer to her question wasn’t hard to find.

I want to see love. I want Cub to see love. Every day.

The Beginning

Cub black and white schooljpgMost of us start our day with the idea that it’ll be routine. Most of us don’t expect a cataclysmic, life-altering, devastating event, unless maybe it’s Monday.

October 20, 2014 was a Monday.

I started the day as I do most Mondays – in a rush for work. I kissed my son goodbye (it was his last day of fall break), scrambled to find my keys, and forgot my lunch. Like I said, routine.

Later that morning, I called the pediatrician’s office to schedule a follow up. Cub, my 5 (almost 6) year old son, had just finished a course of antibiotics for pneumonia, and the doctor had thought he heard a heart murmur. Hence, the follow up.

Receptionist: “Oh, it looks like we have an opening at 1:45. Will that work for you?”

Me: “That’s perfect!”

Off work early on a Monday, spending the afternoon with my little boy – a nice break from the mundane.

We didn’t have to wait long to see the doctor – just long enough for Cub to enjoy the fish tank. The doctor said Cub’s lungs sounded clear, and there was no hint of a heart murmur. It must have been caused by the pneumonia and had faded away.

The doctor and I shared a bit of small talk as he typed in the computer.

Me: “So, last Friday at parent/teacher conference, Cub’s teacher mentioned that she and some of the ladies at the school thought that Cub was looking a little more pale than usual. What do you think of that?”

Doctor: “Hmmm…well, let’s see.”

He proceeded to examine Cub’s eyes, palpate his neck and stomach, and look at the palms of his hands.

Doctor: “You know, he does look a bit pale, but the whites of his eyes don’t look yellow, so I don’t think he’s jaundiced. Let’s just do a blood test and check it out.”

We walked down to the lab where they did a finger stick, and we were told to go on home. They’d have the results later that afternoon and would give me a call.

Fifteen minutes later, Cub and I were in the Sonic drive-through. I was buying him a slush – green apple – for being good at the appointment, when the doctor’s office called.

Receptionist: “Mrs. Robertson? Are you still in town? We’d like you to come back to the office. There was something in Cub’s lab work, and the doctor wants to do more tests.”

It wasn’t what she said that made my heart beat faster. It was how she said it – something in her tone. A depth of compassion that felt out of place.

I told her we’d turn around and be back in fifteen minutes. I called my husband and told him to meet us there. I willed the ice that was snaking through my veins to back off and focused on my breathing while stealing glimpses of my son in the rearview mirror. He slurped his green slush and played with his straw – oblivious to the fear building in my heart. I tried to soak him in – to surround his little self with all of my mother’s love, to protect him from something for which I didn’t yet have a name.

Thirty minutes later, Cub was being admitted to the hospital for further testing. His pediatrician had told me that Cub’s counts were exceptionally low – so low, in fact, that if an adult had those numbers, he wouldn’t be able to get out of bed. The doctor was kind, politely hedging around the elephant in the room. But, because of my mom’s recent battle with leukemia, all the terms rang familiar. Too, too familiar.

I stepped up close to the doctor, and asked, “Do you think it’s leukemia?” He said, “With his counts, that would be a very real concern.”

The next few hours felt like a dream sequence. A part of me holding onto the vague possibility of a virus, but nothing could push away the very real probability of a cancer diagnosis.

I was able to make a few phone calls. I helped the nurses hold down my son while they put an IV in his ankle. I tried to explain why we couldn’t go home just yet. I smiled and ordered him macaroni and cheese from the cafeteria.

Around 10pm that night, the hematologist took me and my husband to an empty room where she had set up three chairs. A very gracious woman, she explained some of the tests they had done, and a little bit about the functions of various blood cells. Then she told us she believed Cub has Leukemia.

I heard her words, delivered with compassion and professionalism, though I tried desperately to reason against what my heart already knew to be true.

Childhood Leukemia. Probably ALL (Acute Lymphoblastic Leukemia). Over a 90% survival rate. It’s the most common childhood cancer, and he has good odds.

Good odds. Good odds? I hate that term. It makes me feel like I’m betting on a horse.

I wish I could say that I was that person who knew from the very beginning that everything would be alright. That I knew God would heal him. That we had nothing to fear. But, no. I wasn’t, and I’m not.

No. In those first few heaving moments, my raw, primal terror was louder than my faith. I have lived enough to know that we don’t always win. Win. How could I guarantee that 90% win? My mother’s heart went into an adrenalin-fueled panic. Cub has to be in that 90%.

My husband and I sobbed while the doctor sat and held our hands. We sobbed while she prayed over us and our son. We sobbed while she waited for us to catch our breath.

Then, we talked. “We will have to transfer him tomorrow. You have three options for where to start treatment. Barnes, Kansas City, or St. Jude. We are a St. Jude affiliate, so if you go there, you can do some of your treatment here. But, the choice is yours. I’m not trying to sway you one way or another.”

I looked at her, putting my hand on her knee. “If this was your son, where would he be tomorrow?”

She smiled. “There’s no doubt – St. Jude.”

I sat up, shared a knowing look with my husband and nodded my head. “Then Cub is going to St. Jude’s.”

I waited until Cub fell asleep to run home and pack a bag. It was midnight, and I had no idea how to pack.

My oldest brother drove an hour and a half in the wee hours of the morning to spend the last few hours with us before the ambulance took us to Memphis. When I called him to tell him, the words barely came. Leukemia. Saying the word in relation to my son was like rolling rocks around in my mouth. Awkward. Foreign. Painful.

After a nearly 5 hour, non-stop ambulance ride, we arrived in Memphis around noon. I never saw the outside of the hospital as I was riding in back with Cub, but once I stepped from the ambulance into the breezeway, I was swarmed with kindness.

We were quickly moved from a holding room to Cub’s room on the pediatric leukemia ward. That first day was a blur of doctors, nurses, social workers, a chaplain, child-life specialists, a dietician, and many, many tests. Who knew a little five year old boy could be so brave?

At some point later that evening, one of the nurses lovingly kicked me out. “Go get some coffee,” she said.

I wandered around a bit, unusually disoriented from having no points of reference. I foraged something to drink and some peanut butter crackers that I ended up not eating. I went into the little parent’s room adjacent to Cub’s room, where my little bag was sitting on a pull out bed that I ended up never using. I realized that I hadn’t brushed my hair since sometime yesterday afternoon, and I had probably better set myself to rights. I grabbed my makeup bag and headed into the bathroom.

There was no mirror. None.

At first I was confused. Was it hidden somewhere? On the back of the door, perhaps? Nope.

Then, I was a little agitated.

Then, I was grateful.

I didn’t see what I expected to see. I couldn’t see the bedraggled, exhausted mother spent from her own desperation. I couldn’t see the traces of mascara that my tears had left behind or the little-girl-lost expression in my brown eyes rimmed with red.

Instead, I could see what I wanted to see. I could see what I wanted Cub to see. And, I realized while standing there in front of a blank wall, that this situation does not have to define us. Cub and I don’t have to fall into any preconceived ideas of what a mother and son “doing cancer” are supposed to be like. I didn’t have to be the mom I expected to see. I could be the mom I wanted to be.

So, I blindly combed my hair and tucked it into a clip. I washed my face, put some Burt’s Bees on my lips, and threw on a smile for Cub. I decided I get to be the mommy I want to be, and the mommy Cub deserves, not the mommy cancer says I have to be.

We’re doing this together, and Cub gets his mommy every. step. of. the. way. Not some washed out, hollowed reflection of her. He needs all of her, and that’s what he’s going to get.

I couldn’t help but wonder if someone knew what we mothers would think on our first night, standing in front of a mirror. And, maybe that’s why there wasn’t one on that bathroom wall.