Caregiver to teen - privacy concerns

My son Steven was diagnosed with a baseball-sized malignant brain tumor (supratentorial PNET) 3 days after his 9th birthday in Sep. 2003. He had emergency surgery to remove the tumor in San Diego where we live, after we relocated to Memphis for most of a year to pursue treatment at St. Jude Children's Research Hospital in Memphis.

Today he is a 7 1/2 year survivor, a sophomore in high school, and everything considered is doing very well.

I am one of the moderators of the pediatric brain tumors group on yahoo, and participate actively in a group devoted to medulloblastoma-PNET and another dealing with educational concerns in kids with brain tumors.

My comment relates to privacy concerns. I maintained a blog for years, starting with my son's diagnosis and moving forward. But I've let it alone for some time now, preferring to share my feelings in the online groups I participate in.

The main reason for this is my son. Although our family has always been very open and straightforward about everything concerning my son's cancer and treatment, the fact is that he's now 16 and I feel uncomfortable writing about him and our family's personal problems in such a public forum.

He has never really minded what I've written in the past, but even at 16 he's having a difficult time finding a balance between wanting a "normal" teen life and the fact that he's a cancer survivor. On one hand he's very open and honest, from time to time shares some very personal facts about himself on Facebook, other times he tells me he feels his cancer separates him from his friends.

So it's an awkward time for me. I enjoyed writing candidly about what was going on with us and many friends wrote me to say how much they appreciated that, but I don't feel that I can do this any longer unless I choose to do it anonymously. It should be his decision what to share with a future girlfriend, etc.

I'm just mentioning this in terms of the forums you have here. There is much I'm willing to share, but not in a public forum that someone who googles his name can find. I'm curious what other parents think about this situation.

Survivorship is hard work, for everyone in the family, nobody is unscathed. Love the idea of a young adult survivor group like i2y.

Pediatric brain tumors yahoo group:
http://groups.yahoo.com/group/pediatricbraintumors
Educating BT (brain tumor) Kids group:
http://groups.yahoo.com/group/educatingbtkids
Medulloblastoma-PNET group:
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=medullo-pnet

Comments

  • 2 Comments sorted by Votes Date Added
  • Yup, Kenny changed my username so my last name wasn't attached. I've become more open about my medical "life" but I'd rather people found out from me, not from Google. I'm also applying to professional school so that's an area where I definitely want to control how/if they find out about my cancer history.

    High school is really tough. Not a lot of kids would have had experience with cancer. Compared to adults, who can and do say stupid stuff but chances are more likely you'll find someone to relate to the older you are. Plus there's the maturity thing. I think having experienced cancer as a teen gives you more of an adult perspective on life. Anyway, I had a hard time relating to my peers in high school. I was diagnosed with thyroid cancer in high school and I can count on one hand how many people at school knew. People knew I was "sick" but I wouldn't give more information unless I really trusted them or it was necessary (like my guidance counselor). I did end up making friends with one of my teachers, which was great. I can talk to her about stuff my friends didn't/still don't understand. I'm in college now and I think at least people have matured... it's more likely my friends will ask questions if I bring cancer/"sick" up instead of shutting down or telling me they want to miss school too or something like that. It's just not as big of a deal to other people as much as it was in HS. I do have a great friend from high school who is my age and stuck through me after I had to go to the ICU senior year. I can tell it freaks her out, but instead of acting weird around me she is totally honest. She also is really great about making allowances for me, like stopping to rest if I'm tired from walking.

    So... I'm not a parent but I've been in your son's position and I can relate to feeling both included and excluded/separated in HS :) I would let him take the lead which it seems like you are doing. Maybe he even wants to join here?