'There's a Child in There'

I was sitting in the radiation waiting room yesterday morning. It was crowded. The computers had crashed earlier and everything was running way behind schedule. Everyone else there seemed to know one another; they had been getting the treatments for a while. I was the new guy, but was immediately welcomed into that instant community of cancer patients. Everyone there was older. At 51, I was one of the younger patients.

And then one of the men said, "There's a child in there." The big, lead door had opened and he could see into the treatment room. Immediately, everything changed. The room got sort of quiet; people even lowered their voices. This was something terrible.

Everyone in that room was fighting his own battle. One man had said that the treatment seemed to be working for him — his tumors were shrinking. Another woman didn't know yet — she still had about 20 sessions to go. But all of that was quickly forgotten. "There's a child in there."

Sure enough, the door opened, and a bed was wheeled out. Lying there, apparently knocked out by anesthesia, was a young boy, probably about 7 or 8, certainly no older than 10. He was bald, probably from chemo. He was clearly very sick.

We all watched in silence as he was wheeled away. I can't imagine the agony his parents must feel. I can't imagine the agony he must feel. And then the man next to me said, "It's not right. We've all had long lives. That's not right."

You have to wonder what the future holds for that little boy. Will he survive long enough to learn to drive? Feel his first crush? Have his first kiss? Will he get to grow up? I don't know. I probably never will. But that man was dead-on. It's not right.

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Let's pray that young boy has Leukemia, or one of the childhood cancers that have had remarkable cure rates. I knew a girl who died when I was in junior high from Leukemia (35 yrs ago), and I have known kids recently who are currently cured. They've come a long way curing kids.

Sent by Laura | 12:44 PM | 1-3-2007

Cancer... it rolls in quietly and hits you right in the gut and then leaves you to fend for yourself, callously showing no discrimination.

Sent by Marianne Dalton | 12:46 PM | 1-3-2007

It is not right. I remember sitting in the radiation waiting room and there was a young child, not even 3, getting ready for treatment. Cancer is beyond tragic when it strikes a child. Because all of the bargaining that folks make after diagnosis lifestyle or environment may have caused the cancer just can't be used when a child is diagnosed.

As an adult we can more readily accept our fate. I remember speaking with my mother a week after my diagnosis and thanking God that it was me and not one of my 4-year-old boys that had cancer.

Sent by Janis | 12:49 PM | 1-3-2007

This breaks my heart. As the mother of three healthy kids, I can't imagine a worse nightmare. I read your blog daily, and except for sharing your news with my husband once in a while, I keep this routine to myself. But today, I read this to my 8-year-old daughter who was having a small fit about having to take a shower and correct her math homework. Afterwards, we quietly continued getting ready for our day... and counting our blessings. Thank you, Leroy.

Sent by Mary | 12:51 PM | 1-3-2007

Well, thanks for making us cry first thing in the morning...

This has been one of the hardest parts of my treatment: having to pass the children's office on the way to my doctor's office. It is not right, and that is pretty much all you can say.

Sent by Brit | 12:54 PM | 1-3-2007

One of my nephews had a cancer which formed before he was born. It was discovered just before his 1st birthday. He's now a healthy college sophomore, so the child's cancer isn't automatically the end of his life. I am now taking oral chemo, and talking to my brother and sister-in-law about how they coped with their child's illness puts my aches and pains in perspective. They never dared to have another child, for fear of more cancer. One of my biggest torments, right now, is an ad campaign by the St. Jude Children's Cancer Research organization. They have a picture which first started staring at me out of magazines, of a 2-year-old boy, "Peter", who is bald and has a little, crooked smile. It makes me cry every time I see it, and now it's on billboards and bus shelters everywhere I turn. My own children (ages 11 & 9) try to help me avoid seeing it because they know it distresses me. I only hope it's working as a huge fund raiser. I've been crying just trying to tell you about it.

This ramble is just my attempt to say "hang in there" because there's almost always someone who is in a worse spot than you. Good Luck, Leroy, we're all pulling for you.

Sent by Katie | 1:01 PM | 1-3-2007

I know the feelings you had. Thirteen years ago, long before my wife's recent battle with stage 3 Colon cancer, our youngest son who has down syndrome spent a month in NICU. In the bed next to his there was a child under a year old with a brain tumor. Spending time in the unit with many critically ill babies probably had more effect on us than everything we have gone through with cancer.

Sent by Robert | 1:03 PM | 1-3-2007

Hi Leroy, I'm new to this blog, but I want to thank you for writing it. I'm sure most days you probably don't feel like talking (or writing) about cancer, but it is SO helpful to hear how someone else is handling it (someone else who has humor and compassion and honesty). My mom has stage iv with mets and I wish she could keep a blog. I think it would help her. (I don't think she's that into the idea.)

Anyway, your post today really got me. My kids have asthma and are prone to a lot of illnesses (like pneumonia). I get physically panicked to think of them with something worse. And I feel like I would just collapse into a heap of pain if I had to see them in the position of that boy you saw today.

But then I remember years ago when I volunteered at a children's hospital. The horror and indignation was still there — all the adults soaked in it like crackers in soup. But I noticed that the parents found strength somehow... they became rock hard, probably for the sake of their kids, but they did it. It was the worst thing imaginable, but they got through it.

I wish I knew what this meant... it doesn't really make me feel *better* about the kid you saw. But it makes me a little more awestruck by the resilience of the human spirit, that — for the sake of others we love — we can find the strength to be helpful or at least not a heap on the floor.

Somehow humans adapt — usually for the sake of the ones they love. This doesn't make it less painful, but it does make me wonder whether there may be a higher reason, perhaps a metaphysical one, for our ability to do this. If I can make any sense of this, I'll let you know. At this point, it's a crazy hope that there is something like eternity where our souls go for repose. I know I have doubts, but I also do not have certainty that it doesn't exist. I think, given the amazing power of love, our chances are pretty good that it exists!

Chin up!

Sent by Crow | 1:16 PM | 1-3-2007

Dear Leroy,

I, too, am in the midst of radiation. So far I've had 30 sessions, with just 3 more to go. At this point my burns are quite painful, and my skin looks like raw steak.

I was initially told that January 4 would be my final day of radiation. With so much that is uncertain in the life of a cancer patient, the idea was something that I was holding onto like a lifeline, an end to at least one part of my treatment.

A couple of weeks ago I received a call asking if I could move up my appointment. I said that I couldn't, that I was supposed to take a final exam for my class. Several hours later I received a call canceling my appointment because of an emergency. Irrationally, I was frustrated and upset because it felt as though the light at the end of the tunnel had grown at little dimmer.

When I went in for my next appointment, I asked what constituted an emergency in radiation, since appointments are usually made in advance. I was told that a 10-year-old had been scheduled for three days of full-body radiation and had freaked out at his first appointment. Arrangements had to be made for an anesthesiology team to be brought it, a lengthy process that put paid to the entire schedule. Hearing this, all I could think was, "I wish I had known this earlier. I would have gladly relinquished my appointment." And all I could do was to say a fervent prayer for a frightened 10-year-old boy and his family.

Sent by Shosh | 1:20 PM | 1-3-2007

The same devastated hush would fall over our radiation waiting room when a child was wheeled through. It just seems so unfair. None of us deserves this, but I am willing to bear it. But it just doesn't seem just that it should afflict a child.

Sent by Stephanie | 1:22 PM | 1-3-2007

When I'm feeling sorry for myself I'll pull out of that state by thinking someone else has it worse. Not taking what we are going through lightly, but it gets me through the day. Amen to that Leroy, "It's not right."

Sent by Gail Hunsberger | 1:24 PM | 1-3-2007

Leroy,

Happy New Year. I agree it's not right.

I had a moment just like that during my radiation treatments. I was having a bad day and feeling sorry for myself. I thought how could my life be any worse, and then I went to my radiation appointment and there was a young boy there my daughter's age. Then it hit me I still had a lot to be thankful for. All the best in the coming year.

Sent by Michael | 1:27 PM | 1-3-2007

Leroy, that is a wake up call for all of us. That little boy should be running and jumping and driving his parents crazy with his new Christmas toys. Those with cancer and those with loved ones with cancer can do themselves a favor by appreciating every moment of every day we have here and now! No, it's not right but we can't change what is to be. May we all be grateful for what we have and may still accomplish in our lives.

Sent by Leah Wellman | 1:31 PM | 1-3-2007

Leroy, This is one of your shorter posts, but one of the most poignant. It took my breath away. I'm sure it will make many pause today.

Sent by Kelley | 1:33 PM | 1-3-2007

Sent by Paula Howry | 1:35 PM | 1-3-2007

Hi Leroy. I know this world of childhood cancer all too well as my 17-month-old daughter goes through treatment for leukemia. She's been on chemo for the majority of her life, but being young is an advantage in that she doesn't know any different. This is her "normal" and she's too young to be angry or worried.

Sadly, her type of leukemia is particularly insidious and her chances of surviving aren't great. I spent many months wondering all of those questions... will she get to take ballet? Will she give us a run for our money when she's a teenager? Will she get to grow up??? I finally had to stop myself from thinking of the alternative because it's just too unbearable. I have forced myself to have hope and assume that she will make it. That is the only way to get through.

Thank you, as always, for sharing your thoughts.

Sent by Chris | 3:32 PM | 1-3-2007

Thank you for your insights and sharing your feelings with complete strangers. I have a very dear friend whose wife is walking the path with lung cancer and the ups and downs, hopes and fears and everyday life of treatment. I also am an RN who works with persons who are transitioning to home from different complications related to treatments. I think that reading your posts are helpful for me professionally.

Sent by Liz Fracchia | 3:48 PM | 1-3-2007

I have tried to post several times today... I was struck with how can this "cancer" be any more right or wrong for any one person than the other.

Just yesterday, I was talking with my mom. She had been talking with radiation patients as my father was having his treatment. She said everyone was fine talking until she told them about her grandson (my son) going through treatments. This is something they didn't want to deal with, something they didn't want to imagine. I was dumbstruck with what to say to that, and then I wake up this morning and read your blog. I'm having a hard time responding, but feel as if I should.

As the parent of a child diagnosed with cancer, you are correct. The questions of their future are there. Will they drive, will they graduate, will they go to college, will they ever fall in love, if they survive, how bad are the after-effects of this disease going to be, will anyone ever see beyond the scars to allow themselves to love them. All of the questions are there. You no longer spout out the words, "when you grow up", "just wait until you have kids", "when you move out." Yes, you may say them, but there is a silence, a knowing silence after you say them.

Yes, my child has cancer. Yes, the probability of his beating it is very slim. Yet can I say that it is a worse situation than my father having it? Can I say it is "more" "not right"? I can't.

See Leroy, my father will also leave behind loved ones. My mother for the most part who has spent the last 49 years of her life with him. My brother and sisters. Me. I'm not ready to let go of my child, but I'm not ready to not be able to call my dad when I need help fixing something or my car is making a noise or any other thing. I'm not ready to walk into my parents' house and have him not be there.

So is my father having cancer any better than my son having cancer?

No.

I think the truth is, if you ask any loved one of any cancer or terminally ill person if this is right, the answer is, no, it's not right.

None of it is right.

Sent by Rhonda | 4:16 PM | 1-3-2007

It's not right at all.

I know a little girl, now 8, who developed leukemia at 10 weeks of age. It was so hard on her parents, not to say her. They did not expect her to live. Her first Thanksgiving, Christmas, and birthday were celebrated in hospitals. She survived, but the chemo is very hard on the developing organs of babies and young children, and she potentially has many problems down the road, including menopause at a very early age and a much higher chance for other cancers to develop.

Whenever I am out doing marathon training at O-Dark-Hundred, all I need to do to make me more motivated is to think of the photo I saw of this little baby, all bloated from chemo and looking so ill, hooked up to IV lines. It is enough to make one weep. And if I can push a little harder, raise an extra dollar for blood cancer research through my efforts so that maybe someone's baby does not have to go through this in the future, then that is all the motivation that I need.

And seeing the comments posted by Chris about her 17-month daughter with leukemia, that is just additional motivation to try to help others afflicted by this awful disease. It just isn't right for any baby or child to have to go through this.

Sent by Art Ritter | 5:17 PM | 1-3-2007

In my church family there have been eight people who were diagnosed with cancer in the past three years. Only one has died. Four are still in treatment and three have been free from all symptoms for about a year. The people who recovered the quickest were the ones who: changed their diet to mostly fresh fruits and vegetables,(or concentrated fruit and veggie capsules), increased all vitamins and minerals consumption three fold (or more), and removed pollution from air, water, and household environments. There is still hope for people with cancer, now!!

Sent by Jim Henderson | 11:42 AM | 1-4-2007

I did not want to read your column and resisted it for some time but kept coming back and now I am hooked. My Uncle died of cancer last year at 59. Since that time I have been thinking about life and death, and your column helps me focus my thoughts on living the best life I can, however simple or complex that is. Reading your words is helping me to understand so much my uncle did not/could not say. Thank you for being so honest and God bless you.

Sent by Michelle Dunphy | 2:13 PM | 1-4-2007

I have often wondered what the older patients thought about the kids in their midst waiting for scans or radiation.

My son was diagnosed with cancer when he was 2. He is now almost 6 and is running out of treatment options.

It is sad — it is enormously sad. That said, the amazing thing about kids with cancer is that they want so much to just be a kid that they will play and have fun despite being in pain, feeling nauseous or dragging a pole around behind them. My son went off to school this morning for the first time in three months with a smile on his face despite a bloody nose, weakness, a limp and blissfully unaware of his relative paleness, skinniness and patchy hair.

I hope the adults can get beyond their feelings of sadness and take inspiration from these courageous kids.

Sent by Susan | 2:16 PM | 1-4-2007

Hi Leroy, I'm definitely in the minority, but I believe that there is a reason for children who have cancer, are born with terrible physical and mental handicaps that prevent them from leading what wed call a meaningful life, and other calamities that befall children. This may seem way out to people who haven't considered reincarnation, but I believe that those children are REALLY brave souls who have volunteered to come into a difficult life for their ability to bring out the best in those around them. The parents and other family members who have to care for them, guide their lives and make their medical decisions are touched. The nurses, physicians, therapists, and other care givers give their best and grow by being able to reach out to children and the disabled, and to make their lives better. People who aren't directly affected by these children are often moved to help children that they've never met by volunteering for organizations like the Shriners or St. Jude's Children's Hospital.

I'm not saying that I advocate for there to be ill or disabled children in the world. I just believe that there is a reason that enlarges those who respond to ill children with love, acceptance, pushing their research to bring hope and cures, going to foreign countries to care for disadvantaged children for free, and other acts of kindness. It's something to think about.

Sent by Nancy K. Clark | 2:25 PM | 1-4-2007

This is my first visit — and my first comment — on your blog. My girlfriend found it, through her Googling of sites on cancer. I guess the fact I was diagnosed with stage IV kidney cancer and bone metastasis last June somewhat changed her Web browsing habits a bit. :) Thank you for sharing with the world what your life brings.

Reading this post, I cant help but share your reaction that "It's not right". The "normal" order of things is for parents to have children, to grow old, to pass on, with the children perpetuating the cycle. No, it's not right to see your children hurting — even dying.

Life is a finite thing. We all know that. But we do have a mental "line" where we feel that we have lived. Maybe not well enough, maybe not long enough, but we have some decades behind us. Seeing a child with any life-threatening disease is seeing someone being robbed of all that, at the time where they can merely begin to dream of what could be.

Yes, it does make our own pains pale in comparison...

Sent by Benoit | 2:29 PM | 1-4-2007

I thought you would be interested in this story: they have quantified the cost of time we spend in cancer treatment.

Take care, and know you are doing great work in the world!

Sent by Teresa Hartman | 3:51 PM | 1-4-2007

OK, here we go — my 8-year old daughter has cancer and she recently said about a friend of hers who died of his cancer at age 11, "But mom, he had a good life — it was a short life, but it was a good life." My experience has been that the kids who have cancer are amazingly evolved when it comes to life and death, and that they have a lot to teach us adults!!! I'm not saying that there isn't always a terrible feeling of injustice when a child has to die there is, but I think we have to remember it's all about how the experience resonates with person having the experience — and I have been profoundly touched by the grace and matter of factness of attitude in my time spent with children with cancer. Let's all continue to be outraged anyway that anyone, of any age, has to suffer with the difficulties cancer brings to patients and their families!!!!! Then maybe we can find a way to cure the disease.

Sent by Alice Williams | 12:36 PM | 1-8-2007

Your post brings up a question I've been pondering since my diagnosis of breast cancer in 2006: How much time should any of us "expect"?

I'm one of the younger patients at my clinic: 39. Through Youngsurvival.org, I've met dozens of other women under 40 with breast cancer, a few actually in their teens!

We all feel cheated, as normal future events taken for granted such as children, marriage and career are suddenly in doubt, or disappear completely.

But reading your post I can see that even us "young ones" have had more life than these children. The assumption is that they're "owed" adulthood, the same way that I think I'm due middle age. But of course, there are no guarantees of anything in life, including life itself.

Good luck to you Leroy.

Sent by Laura | 2:16 PM | 1-8-2007

Love you Leroy, and love all your readers who took time to post.

I have posted before. My son has a form of histiocytosis (LCH). We are classified as No Active Disease today. Our scans are tommorrow so we will see if things are still not active.

It is not fair. Your story validated the hard journey we are on. We feel isolated and alone as so many of the folks we know are afraid of something - like their children can catch it? Or they might have hard times because this happened to us?

However - My husband and I want you all to know there are blessings too. You have experienced them — prayers from strangers, the phone call at just the right time, the help.

Our journey has led us to awesome professionals, fundraising folks with the passion to try to fund a cure, and an entirely new perspective on life. Once we would have stopped our sweetie from splashing in mud puddles — now it is the joy of life coming out of him.

Keep the blog going. You are helping us so much and I hope this community continues to help you.

Sent by Melissa Thompson | 2:45 PM | 1-8-2007

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