the love of a mother!

Family Counseling: Childhood Cancer

Melissa Ryan

University of Oklahoma

Leukemia. I turned the word over in my head,

examining it from all sides, above and below, trying to make

sense of the shape. I analyzed the sharp angles contrasted by

smooth curves, the “e” and the “u” joined in an unholy

alliance, slamming headlong into the harsh “kuh” sound, and

then oddly finished with a pleasant “mia.” I could not make

sense of it, what was this thing, this “leukemia”? My inner

gestaltist attempted to fill in the missing information; was this

“leukemia” object the figure or the ground? Was it a piece of

the whole, or the sum of all the pieces? Leukemia. I knew how

to spell it, so I must’ve seen it somewhere before. My mind

ticked through my Rolodex of infectious childhood diseases:

Cerebral palsy, chickenpox, cystic fibrosis, measles, mumps,

rubella, spina bifida...but I couldn’t find leukemia. I knew it

was bad from the way people were forcing it out of their

mouths, using that low, serious voice people use when

speaking of something grim. I also knew it was bad because I

was sitting in the pediatrician’s personal office after hours,

waiting on the results of the third blood test my baby would

have that day. After the first test, we were sent to a different

lab because his “white count” was so high they thought their

machine was broken. It wasn’t.

I would learn many things that day, and many more

in the days ahead. That day, I learned that blood had a white

part, and it could be counted. I learned that doctor’s offices

had private entrances and at the tender age of 26, as my

seven-month old baby lay sleeping in my arms, I learned that

this object I was attempting to decode was a paradox; it was

both a piece of a whole, and the sum of all its pieces creating

the whole, and it would never, ever make sense. April 15th,

1992 was the day I learned the meaning of leukemia.

“What exactly is leukemia?” I tried to sound calm,

hoping the doctor didn’t hear the alarm bells ringing in my

head when I opened my mouth to speak. I heard his response

in slow motion: ”Loo kee mee ahh is kahn sss errrr.” I

marvelled at how long those heavy words stayed suspended in

midair. How did that sentence neutralize the Law of Gravity?

I stared blankly at the doctor.

Cue spotlight. Clank! Fade room to black. Zoom out.

Stop the clock. I watched the scene from some distant

location. Thoughts raced through my head. “What did he just

say? Did I hear him correctly?” His words still reverberated in

my ears, “Leukemia is cancer.” No, that can’t be right, I

thought, babies don’t get cancer. Babies don’t get cancer, they

just don’t. Do they? Can they? Cancer? Leukemia is cancer?

Why didn’t they just call it “cancer”? Why did they have to

give it such a stupid, bossy name like “leukemia”? What the

hell kind of word is “leukemia”? Those words don’t go

together, they don’t even sound alike. This is a cruel joke, this

isn’t happening. Wait, is this happening? Maybe he said,

“Leukemia is answer, dancer, fancer,” come on, think what

else sounds like ‘cancer’? He said, “CANCER,” This is not

happening. This is a dream. This is a dream inside a dream,

I’ll wake up any minute now. Wake up! No, wait, he’s wrong,

the machine was broken, both machines were broken, all the

machines in the world are broken because my baby does not

have cancer, there’s no such thing, and my baby is not going

to die. Oh my God, my baby could die, I never heard of babies

having cancer because they all die. Oh my God. No wait, slow

down... think…. it’s fine because babies don’t get cancer and

there’s no such word as leukemia, it’s the dumbest sounding

word I’ve ever heard, it’s a made-up word for this asinine

prank.

The doctor’s words broke through the silence, and

the clock began to tick again. “Leukemia used to be a death

sentence for children, but the cure rates have increased

dramatically in the past ten years.” I suddenly became aware

that I wasn’t breathing. I made myself take a deep breath.

Breathe, just breathe. Find out what you need to do, where

you need to go, who you need to talk to what you need to tell

them, ask a million questions and maybe it’ll be okay.

The doctor patiently answered our questions with an

eye on the time. We were to have our baby admitted to the

local hospital for the evening, he had developed a fever and

he needed immediate care. The doctor handed me a slip of

paper with a number on it. It was the number of mother of a

local leukemia patient who had gone to the same hospital we

had chosen, St. Jude Children’s Research Hospital. She would

help me, he said. The following hours were a blur of activity.

We had Chris admitted to the local hospital. His dad stayed

there while I went home and packed for the three of us. The

doctor had said plan on being there the first time for two

months. I thought he must have meant two weeks, nobody can

just leave for two months, what about my daughter, my sweet

Chelsea?

Chelsea had just turned two the previous week. What

was I going to do about Chelsea? I vacillated between a foggy

dream-like state and moments of pure practicality. I now

know I was in shock and I was having an acute stress

reaction. It was a normal reaction to an abnormal event, and

nothing would ever be the same for our family again.

I called the number the doctor had given me, and the

other mother welcomed me to the “club” of unwilling

members. She was a wealth of information, she spent at least

four hours on the phone with me, explaining everything she

could, helping me know what to pack, and yes, plan on two

months for the first visit. Two months is the timeline if

everything goes well, and in our case, it didn’t. I made

arrangements for someone to watch Chelsea, she would be

shuttled between various grandparents, each with their own

rules and expectations for two year-olds. I was crushed that I

had to leave her.. It wasn’t ideal, but I had no choice. Over the

next two years, I would keep her with me at the hospital as

often as possible. St. Jude’s was five hours from our home in

Fort Smith, AR, and at the time a five hour trip seemed

excessive. Family members weren’t willing to come that

distance very often, so I just kept Chelsea with me as much as

possible.

I stayed up all night packing and in the morning we set

out for Memphis, TN. When we arrived at the hospital, the

first thing they told us was, “Don’t worry about money. Worry

about taking care of your child, we will handle the rest.” St.

Jude’s treats catastrophically ill children without charge to the

family. I cannot imagine having that added burden in the

midst of such an intense crisis. It’s an extraordinary place,

with an extraordinary mission ~ curing childhood cancer. No

child is ever turned away because of family’s inability to pay

for treatment, in fact, there’s no charge whatsoever. Not only

is the medical care free, St. Jude’s also pays for transportation,

meals, and lodging.

This is only part of an 18 years story. A story that is the life span of most young adults today. How many of you are parents? How many of you are dealing with uncertainties with your child?

By the way, this is totally true, lived it been there and seen it, day to day. These are as 're children.

Very well written, and so sad!
You might want to have the Mods move it to a more appropriate forum, though.

It's not so sad Chris's still lives today, he is alive because of her courage.e reply to: nugget1

It's only sad when we fail those that we love.

a reply to: twohawks

bummer you have it written like that.

I only briefly scanned it and will read it fully later. I was reading it fully till I got to the word Leukemia so I scanned from there on in. I'm not meaning it as a disrespect, it's just a difficult subject for me to read as I have lost a friend to Leukemia (he turned 16, his counts were great and then two days later he was dead)

I've also known a couple children who have passed away from different forms of cancer as well as a couple adults.

My younger sister was diagnosed at age 5 with Sjogren's Syndrome so I saw a lot of sick kids at B.C Children's Hospital. It got to the point where I couldn't go to the hospital while my sister was having check ups, it was way too depressing to see all those children who were most likely going to die. The last time I was at B.C Children's Hospital was to visit my friend who passed away from Leukemia, he was in the Rainbow Pallet floor. (the floor for kids who are dying) It was way too hard for me to see kids on that floor who were in the process of dying. Especially because at the point I already knew two kids who passed away, one was my younger sisters best friend and she was 8yrs old when she died and a 2 1/2yr old who had died.

It is amazing & heartbreaking what some parents have to go through. Some detach because it's too hard and others it makes them stronger. There are way too many kids in the Okanagan, B.C who are sick with some illness or form of cancer that they are going to open a Children's Hospital in Kelowna, B.C. Makes me wonder if it's because of all the farms & the run off of pesticides into creeks that run into the public beaches & sometimes gets into the drinking water.

I used to baby sit a boy and his little sister. St. Jude's saved that boys life as well. Those two kids changed my life for the better. I was blessed to know them, I was still in contact with him up until I closed my Facebook down a few years ago.

This brought tears to my eyes, I'm happy to see that this little one lived as well. This hospital and the people involved with it are beyond incredible!! I have been long convinced that they are saving angels that we need with us still. Thanks for sharing this!