Families

What It’s Like to Be a Mom of a Child With Cancer

by Leslie Jermainne
January 8, 2015

Leslie shares her thoughts before her first shave last year with the 46 Mommas.

Leslie

Leslie with her son, Brian, before shaving her head with the 46 Mommas. Brian is in remission from Hodgkin lymphoma.

Why am I shaving my head? I guess you could say I’m shaving for three people.

I’m shaving to honor my son, who is a one-year survivor of stage III Burkitt lymphoma.

I’m shaving to empower myself, to move forward as best I can from this childhood cancer nightmare.

Read more about Leslie and her son’s childhood cancer experience >

But in all honesty, I’m shaving for a woman I don’t know. A woman I will never meet. I will never know her name or her child’s name. But I do know that tomorrow her world is going to come to a crashing halt.

Brian six months before his childhood cancer diagnosis

Brian six months before he was diagnosed with non-Hodgkin lymphoma.

She will have already spent days, weeks, or months sick with worry. She will probably have been to see her child’s doctor numerous times. She may have already made several emergency room visits with her sick child.

Or she may be like I was, and her child isn’t sick at all. Her baby just has a lump that won’t go away.

She will be sitting in some hospital waiting room with too-bright lights and a cup of cold coffee. She will be pretending to read a book or a magazine while she wonders how her baby is doing in surgery. She will see the doctor walk in and she will hear some of the most horrible words of her life: “Your child has cancer.”

She will look at him and try to absorb every word, but in reality her mind has turned down the volume on the world. She will nod her head and try to swallow the rising tide of tears she feels coming. She will strain to hear words she doesn’t understand and all the while her mind is thinking of her baby.

Whether that baby is 15 days old or 15 years old, make no mistake, that is her baby. And someone just told her in a whole bunch of confusing words that her baby might die.

After hearing the quick diagnosis, this mom will be taken to her child, groggy and sleeping in a recovery room. She will have to pull herself together and act like it is fine.

She will touch her child ever so gently, her innocence as a mother already shattered into tiny little fragments. She will stroke his hair, touch his arm, smile into his face as he opens his eyes and looks into hers.

There aren’t really words to say. She will have no idea what is coming, but she can tell her child the universal words of comfort: “It’s going to be OK.”

A Letter to Myself: What I Wish I'd Known About Childhood Cancer
When treatment starts, she will watch her baby be wheeled away from her time and time again as he goes into some procedure. She will sit in the waiting room every time and cry and pray. She will watch as bags of poison are hung on the pole that stands ever-present beside her baby and watch it flow into his body. She will learn how to silence a pump alarm, cry in public, exist on coffee, and spend hours doing nothing but pouring love into her baby.

She will beg, threaten, plead and cry to the world, to God, to anyone who will listen. She will ask for the cancer to be moved to her and promise she won’t even fight it. She will cry more than she thought possible.

She will read and digest more information on a subject she never wanted to know anything about. She will become an expert on blood counts, lumbar punctures, nausea control, and fevers.

Brian after his first port surgery

Brian after surgery at the start of his childhood cancer treatment.

She will learn to live in an 8-by-10 space probably with another mother and child in the 8-by-10 space next to them, separated by a curtain that can feel like a brick wall or like thin air depending on the day. She will gladly sleep on a rock-hard little chair, just so she can be within two feet of her baby at all times. She will sometimes leave the room to get coffee, do laundry, get some food, or just get some air, the whole while wanting to run back and kiss that little face again and again and again.

She will smile at her child through all this. She will reassure him that it will be OK. She will entertain, snuggle, read to, and encourage this child like her life depends on it, because it does.

She will listen to every test result with a sick stomach, hoping for good words. She will find her strength and she will ask a million questions and she will advocate for her child and his needs. She will constantly fear the worst and pray for the best.

Leslie and Brian in November 2014, four months after he finished treatment for Hodgkin lymphoma

Leslie and Brian in November 2014, four months after he finished treatment for Hodgkin lymphoma.

And if she is lucky to go home with her child on the road of remission, she will know how lucky she is and she will know to never take one single second for granted ever again. She will understand how precious and delicate life really is.

She will think that someday this may be over. But over the next months of being on constant watch for any teeny, tiny sign that something is not OK, she will slowly realize this worry will never, ever end.

She will forever pray and beg that her baby be OK. That he won’t relapse. That her child will heal. That her child will regain his strength, his energy, his life. That her baby won’t develop so many of the long-term effects they were told about in the beginning but really didn’t even listen to, because “long term” was too far away at that point and because they had no other choice.

And if she is this lucky to be at home worrying about every too-long nap, warm-feeling head, lump, or bump, she will never, ever forget that some mothers don’t get to do this part. That some mothers go home without their babies. And it makes her feel sick to her stomach.

She is the person I’m shaving my head for.

She is the one that has no idea what’s coming tomorrow. She is about to have her life veer off in a direction she doesn’t understand at an unstoppable speed, and if she makes it through the ride, she will be such a different person than when she wakes up tomorrow. And she has no idea.

So by doing this small act of shaving my head, I hope that one day there will be a tomorrow where no mother hears some of the worst words of her life: “Your child has cancer.” I am shaving for her and for all the other mothers that don’t know that tomorrow will forever change their lives.

I’m shaving for her. And she is me.

Leslie is raising money for research so that one day, childhood cancer won’t mean what it does today. Donate on her page.

Like Leslie, you can take a stand for all the children and families facing childhood cancer. Be a shavee℠.

Be a Shavee

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