Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Monday, October 04, 2004

Further and Further Apart: A Mother's Rantings

Last Friday, Steven came home from school, took off his backpack, plunked himself down on the couch, and frowned at the floor.

I sat down and probed him for a cause, usually this sort of thing is due to a spat between him and Sean. He said he wasn't mad at me or Doug or Sean.

He finally tells me the problem is, he feels like he's getting further and further apart from the other kids at school. He doesn't really have any friends there.

The older brother of a kid in his class asked him something the other day, when he answered, they told him that his voice sounded funny and walked off.

The kids in his class are very nice and nobody makes fun of him, but none of them seeks out his company. He sits with them at lunch, then they take off with their other friends.

There is a child in another fourth grade class that does make fun of him, this child came to his school midyear last year and doesn't know him. He used to point at Steven's bald head and laugh, now he makes fun of Steven's bald spot, his voice, he tries to get other kids to laugh with him.

Steven has tears in his eyes and a quiver in his voice when he tells me that they don't even give him a chance to explain why he is the way he is.

When Steven returned from Memphis in between radiation and chemotherapy, he had lost all his hair. Doug and the principal met with Steven's class, brought in a photo of Steven without hair, and explained about his treatments and how radiation and chemotherapy kill the rapidly growing cells, hair follicles contain lots of rapidly growing cells, so they are affected by radiation. The kids were allowed to ask anything they wanted.

On Steven's first day back from Memphis, the kids were allowed to ask him directly any question they wanted. I told the teacher they can ask him anything at all, including whether or not he's afraid he will die. We've discussed everything amongst ourselves already, no subject is taboo. We'd far rather that they ask him directly than speak of it behind his back.

This took care of his class, but what about the other classes, the other kids he sees on the playground? It's an awkward situation. It would be nice if the school proactively took this on as an opportunity to educate the kids about cancer and about kids with differences, but it makes everybody uncomfortable. The reality is that almost every one of these kids will be dealing with cancer themselves some day, even if they don't get cancer themselves they will almost certainly be dealing with cancer in a family member or a loved one at some point in their lives.

Sometimes it seems like a cultural problem. People teach their kids not to speak of people that are unusual, but that's something that has always baffled me. A very good friend of mine was in an auto accident once, she broke the steering wheel of her car with her nose. She had surgery and a huge bandage on her face for several weeks, along with a swollen black and blue nose.

She would go places, people she didn't know would act like everything was fine instead of asking, "What on earth happened to you?", she knew they were thinking it, if they'd asked it would have provided her with a convenient opportunity to explain.

Personally I think it is so much better if you can ask about things like that, it gives the person a chance to explain, if everything is out in the open, there is no need for whispering behind someone's back. The idea that everybody is supposed to pretend that there's nothing wrong and that kids aren't supposed to ask seems diametrically opposed to human nature to me.

But we're dealing with a child with a life-threatening illness here, and nobody wants to think about that. We don't either, but we have no choice. And truthfully, avoiding the topic is doing a disservice to all those courageous little kids we've met that are battling catastrophic diseases, behind that bald head and body swollen by steroids there's just a regular kid if people would take the time to get to know them.

There was 10-year old girl at Steven's school last year who had a cavernous hemangioma, not a tumor but an abnormal growth of blood vessels near her brainstem, she had to have an emergency surgery to remove it.

The surgery was successful, but the recovery was terribly difficult. Initially the girl had no gag reflexes, so she had to remain on a ventilator until her gag reflex returned, she was hospitalized in intensive care for something like three months. She had a really rough time, but she eventually recovered and returned to school.

Some of our neighbors' girls were in her class. One day they were talking to me and said that she was different after she came back to school. I asked them what they meant by different.

They said she'd always used to be thin, now she had a puffy face and she was pudgy. The way they described her appearance sounded like the classic appearance of a child on steroids, they usually give decadron (dexamethasone) to control swelling in the brain, it is very effective.

Some of decadron's side effects are a 24-hour appetite that won't quit, terrible fluid retention, and wild mood swings. All those kids with cancer you see with the puffy faces are almost all on decadron, it controls their brain swelling and keeps them alive. Three-year old Kyra gained 50 lbs on decadron, going from 30-something pounds to 80 pounds.

I was wondering why on earth nobody had explained this stuff to the kids. Instead we've got the neighbor girls talking behind her back and wondering amongst themselves what happened to her, I don't imagine this is doing much to help her to find a fit back at school.

So, what to do. It's not an easy question to answer. It would be nice if there was some way the school would actively participate in educating the other kids about what has happened to two of their own. At the same time, it's not something we would want to make too huge a deal of, Steven's cancer experience is only one of the many life experiences that has contributed to who he is.

In Memphis, the presence of St. Jude in their midst has caused the entire city to be educated, the little bald kids wearing HEPA masks are welcomed and embraced wherever they go, they get free admission to local attractions, there is tremendous community support. The local schools, public and private, participate in fundraising activities for St. Jude, they make cards and do art projects that are delivered to the kids that are hospitalized. Local churches, the Girl and Boy Scouts go to Ronald McDonald House and cook dinners for the families. Many adults in the community volunteer their time at St. Jude. The community loves those kids, they wear the badge of having a state-of-the art pediatric cancer treatment center in their midst with pride.

Things are very different here. It seems like a cruel joke sometimes, that children like Steven who face so many challenges in their lives, must also face the fact that their situation separates them further from their peers, and the comfort that the acceptance and support of their peers would bring.

I asked Steven, if he could change absolutely anything about himself, things that would help him fit in with the other kids at school, what would it be? He said, "My voice and my hair."

Steven has a hypernasal high-pitched voice, we believe its due to a shortened palate, a result of the (repaired) cleft palate he was born with. Some have told us that surgery to lengthen the palate could help, others say that's not the problem. I promise to make an appointment with the ENT to discuss it again.

Regarding the hair, there's Hair Club For Kids, they treat any child for free that has suffered hair loss, we can at least see what they have to say.

He really is a great kid. Like everything else, we're figuring it out, our new lives in Holland.

-- Kathleen

More for those who know my mom: Her surgery was successful and although she's still in some pain, she's doing very well. Casts on both arms, but they've been switched to casts that cover just her wrists and part of her hands (fingers are out). She's got much better use of her hands than before with the casts that covered her elbows, she can at least eat finger foods now by herself.


Anonymous Joe Wrightt said...

Steven, I have been loving you for ever it seems. I really feel for you, especiakky when it comes to school and the crule way kids cab be. But may I ask if yo have done something? I know that your family has spoken to the school, especially about certian kids that are extra crule. But what about havibng a little publicity over you? What about having a talk with the school in a way where media is there and your local TV people? I think a story about child with cancer on TV may help??? You could become a famous little local child? Could you get a famous personality to visit you? You may already had local attention, but if kids think you might know someone, then you may make more friends. I already think Steven Bell is famous; but sometimes kids can be crule. Maybe they might be a little jealous if they seen you getting local media attention; but it may help!!

August 27, 2005 4:13 PM  

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