Anticipating future questions about son's appearance

april262011 · July 2012

We got a good ct scan result yesterday. At his previous scan two months ago, there was some concern with cancer reappearing. Yesterday's scan indicated that the area in question is probably post op abnormalities, and not tumor. For the first time in months, I can start to see a light. The end of treatment is still a few months away, there is always the concern of recurrence, and we will be dealing with his treatment's effects on his organs for the rest of his life (transplant is likely), but it is nice to know a time where we won't have to be at the hospital all the time is coming up.

This said, I am starting to think about life when treatment is over and we can finally bring him around other kids/adults. Most specifically, whether or not I should share his diagnosis with others. He has no hair (eventually this will change), large scars on his chest (one goes all the way across), and a sub Q port (which protrudes from his chest). He will be a little shy of 2 yrs when treatment is done. I know he's young now, but I don't ever want him to feel singled out for being different. I want to start employing the right response to questions now. If I tell a curious parent, and s/he shares the info with his/her child, I worry that he may be teased.

Lets say, for example, we are at the pool and a child asks about his scars? What about if an adult asked?

april262011 · July 2012

-auntie-:
Man, that's a hard one.

The thing is, what has happened to him is a part of his history and his history is a abig part of who he is as a person. To deny that history is to make a value judgement that part of who he is is shameful.

In your place, I would rehearse a few factual but vague answers. You don't need to elaborate, necessarily, but a simple "DS was very sick as an infant and needed surgery, but he's healthy now" is one option. Of course, this could interfere with meeting other parents who have similar experiences.

I definitely don't ever want him to feel any shame over his battle. I want him to be proud of his scars, of what he has gone through. I like your suggestion. It is a great starting point for me. Thank you.

As far as meeting other parents who have had a child with cancer, this is something I really want. When we return home, I plan on contacting the oncology ward of the local hospital to see if they have any support groups. Plus, we will be going there regularly for scans and bloodwork.

grbnik · July 2012

I don't have many ideas about dealing with appearance, but just wanted to say YAY for good news!!!!!! I was reading your post last night, and was so happy, I made my DH read it too! We are so happy for a good sounding prognosis! Good luck with all- our thoughts are with you guys!

april262011 · July 2012

I see the value in being open. I don't have any experience with kids older than two, and I'm sure most kids would be accepting. I just worry about that one kid who might tease him.....but, I suppose I can't protect him from everything. By high school age, he would be plenty old enough to decide if he wanted to share, and I will leave that up to him. But, before he is old enough to make that decision, I have to make it for him and I just don't know how much to share.

april262011 · July 2012

grbnik:
I don't have many ideas about dealing with appearance, but just wanted to say YAY for good news!!!!!! I was reading your post last night, and was so happy, I made my DH read it too! We are so happy for a good sounding prognosis! Good luck with all- our thoughts are with you guys!

Thanks, grbnik! It was a huge weight off. It has been an exhausting year. So far we have been fortunate in our misfortune. I hate that he has to have so many ct scans and mri, but with cancer, early detection outweighs the risks.

JenGK · July 2012

My youngest brother had cancer, which led to a kidney being removed when he was a year old. He was bald and skinny for a long time and had a port in his chest. My parents were very open about it from the start. When he played baseball later on, he had to wear a special protector for his remaining kidney - it was never an issue. He has a large scar on his torso that has faded somewhat with time, but is still very evident. He just tells people he had cancer when he was a baby. BTW, he's now over 6 feet tall and burly guy - you could never tell he was so sick as a baby. Glad to hear your LO is doing better!

april262011 · July 2012

JenGK:
My youngest brother had cancer, which led to a kidney being removed when he was a year old. He was bald and skinny for a long time and had a port in his chest. My parents were very open about it from the start. When he played baseball later on, he had to wear a special protector for his remaining kidney - it was never an issue. He has a large scar on his torso that has faded somewhat with time, but is still very evident. He just tells people he had cancer when he was a baby. BTW, he's now over 6 feet tall and burly guy - you could never tell he was so sick as a baby. Glad to hear your LO is doing better!

This was so nice to read! Thank you for sharing about your brother. My son will also have to wear special equipment to play sports in the future. It is nice to hear a success story; I have only met one other parent here with a child as young as mine going through treatment.

april262011 · July 2012

-auntie-:
Teacher Clark:
As a teacher I have had kids with special circumstances in my classroom before. Since I teach high school the kids are pretty good about not asking what their specific issues are, but I can tell they are curious. I have found that when the kid in question is open and straight forward about their situation, the kids are very understanding. I think they are more accepting then when they didn't know the facts. Most often they are truly curious and aren't trying to be mean. On the other hand, I have had kids who didn't want to discuss their situation (which is their right), but it always seems to put a distance between them and the other kids. From what I have seen, teasing comes from ignorance. The more informed people are the more accepting they tend to be.

Ding, ding, ding.

This. The only kids I see who are picked on for a difference are those who have subtle behavioral/developmental issues. It's especially likely if the dx is not shared or is not "believed" because the kid straddles typical/sped world by being OK in some situations. How adults treat the child is critical- kids will follow the AIC's lead around this.

I saw an example of this a few days ago. I was working for the day at the local scout camp. One of our troop's new boys has autism- camp is really hard for him in a lot of ways. Our troop has considerable experience with autism- we've had 2 Eagle Scouts with Aspergers and a handful of kids with PDD-Nos previoulsy. At the daily closing ceremony Danny struggled with appropriate behavior. Being in line is hard for Danny, so his dad parked him at the end to give him space. Listening to the bugle was hard for Danny (OMG, the bugler should have been punished) and he bent over and grabbed his ears. An adult there for just the day, who doesn't know the Danny-story, childed him publically for not standing up like a man. Not my place to explain Danny's condition (Danny has Kanner's, his sister has ADHD, hypotonia and dyslexia, his oldest brother has developed PANDAS which has complicated his previously under control OCD, GAD and his middle brother was dismissed from camp staff for smoking weed) On the walk back to campsite, I talked to the newbie and explained that our troop culture is inclusive and that we do not make fun of scouts who are having a hard time because they have challenges in certain areas. I'm sure he felt terrible, especially given that his oldest son has what have been described to me as "learning differences"; I've worked with the boy a few times and he just seems dull rather than dyslexic. Maybe he's got a global memory glitch or auditory processing delay, but he just seems much slower than the other boys.

We had a scout who had open heart surgery two years ago. His bright pink zipper was quite the talk for the first meeting back. He couldn't wait to show it off. He was in middle school and gave a whole talk about his experience. The kids were fascinated by it.

I hate that any kid be teased, whether it be due to physical/behavioral differences. You all have helped me see the value in being open with his cancer diagnosis. I think that this is the route I am going to take. And when i do so in front of him, i will make it a point to emphasize how brave he is. I greatly appreciate the input I received; thank you.

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