Knowing just a smidge about child evelopment I have to say the age of the child needs to be considered too. A 14 year old, a reasonably mature one anyway, has the capacity to understand that soemthing can be difficult, even scary, to get through but necessary for survival. They can understand the abstraction of courage when they see the reality of radation. I think giving your grandson a chance to see his grandfather's courage was a wonderful thing to do, Amy.

This is not necessarilly so for younger pre-adolescent children who are more likely to simply be oevrwhelmed by the frighteningness of things like the mask and the machinery.

I admire enyone getting through this with children--especially young children. I can see how they give you great motivation to survive but it has to be hard to keep their needs front and center as you go through treatment.

Nelie

Wow! You all are so great to give this wise input! My husband and I both have been very interested to read and discuss your insights. We homeschool our boys and so we are both very connected to what their emotional make-up has been through this process. Since I have been fighting this "monster" since they were just 3 and 2 (my youngest had his second birthday the day before my first surgery 6 1/2 years ago) they have grown up with a more heightened awareness of this illness. In their younger days we obviously had to protect them from what they couldn't understand. This time we knew they'd be exposed to more but also mature enough to handle more. We were very honest with them about the surgery and how my appearance and abilities might change because we believed that they are more fearful and imaginative of what they don't know. Isn't that what this is about? Knowledge is power...and we extended that to our children as well, on their level and with their unique sensibilities in mind. We also allowed them to guide us into what they'd be able to handle by listening to their questions and not pushing them into anything they weren't ready for. I could go on for a lengthy discussion of how that all played out during my 3 weeks in the hospital and beyond but...

Now for my other HUGE thank you to you all and this website. Brian Hill, I'm convinced I owe you big time for having the courage in the beginning to share your life and your expertise and to open this door for us to all walk through together. My husband and I met with the radiation oncologist yesterday and because of the reading we had done here, we were able to understand and ask appropriate questions and, I believe, make some knowlegable decisions. I LOVE the doctor. I (we) felt very confident about his abilities and his manner in explaining things, his interest in my case, and his concern for honoring our input and decisions as well. I could go to a hospital much closer to my home to receive therapy but when he sensed that was not my concern he informed us that his first option was for me to drive the distance so he could allow me to benefit from IMRT. Now, if it weren't for you all, I wouldn't have even known what IMRT was so we wanted to whoop and holler when he encouraged us to pursue that. He's also being very meticulous in examining the scans and taking his own post-op ones and discussing me with my surgeon (again) so he is certain not to "kill butterflies with a rifle" but also so we can end this thing and extend my days inasmuch as God allows. I go back for the newest scan and fitting next Wednesday.

I also visited my old "stomping grounds" a couple levels up at the hospital and saw some of my favorite nurses. My surgeon has the BEST nurse practioner alive. I've been close to her since my second resection and she has walked through fire with me. She was there yesterday as well and immediately offered to meet me next week and personally give my boys a tour and education if they came with me. Things seem to be working themselves out!

Minnie, the chemo explanation your doc gave you is identical to ours. Mine has no hx of distant mets and there are no studies on the salivary gland adenocarcinoma to support its use. He was not opposed to it and in fact encouraged us to pursue inquiries of Sloan-Kettering and M.D. Anderson (or even Duke since it's closer). He had already done his homework and was unable to find anyone who know more than he did. I'm very blessed that I don't have any distant mets and that this thing seems intent on staying in the same place. We'd be at a different ball-park altogether if that were the case. It's still considered "low-grade" so even though my scars don't concur, we left the hospital feeling more hopeful about the prospects.

I don't know why I can't keep these short! But I know I couldn't wait to tell you all what we found out. Thanks for the prayers, advice, and encouragement. Please don't stop!

Ruth

Ruth, no need to "keep these short". We all learn so much from each other when we share. I am really interested in this discussion of children, cancer and how to handle the difficult questions. When John was 1st diagnosed, our grandson[who has pretty much lived with us since he was 6] looked me in the eye and asked "Is this a life threatening disease?" It really threw me for a loop because I had not adjusted to the diagnosis yet. I mumbled the usual responses, "it's serious, good Doctors, we think everything will be O.K., etc." But Alex was here when John came home with the staples in his neck, the peg, the swollen face, etc. and has watched his granddad fight this since April. We can tell that he is very agitated over this new occurence and I am feeling so bad for him. It isn't helping that Alex's Dad[John's son] is also freaking out. I'm just crossing my fingers and hoping I say the right thing at the right time to Alex during this next round. Amy

Amy, our boys responded as differently from one another as their personalities are anyway--and each child will be different. My youngest (8) was very apprehensive of the hospital and was fearful to come near me but continuously (from a distance) told me he loved me and wanted me home--and he is my most affectionate one. My oldest (10 now but still 9 last fall) made a strong effort to "be brave" and climbed in my hospital bed with me (after he was assured he wouldn't hurt that side of me) and held my hand while we watched T.V.

Two years ago, my surgery wasn't as disfiguring but they did not come to the hospital because I wanted to protect them at their still-young ages. My youngest had a cyst on his neck removed when he was only 3 (which may explain the "hospital trauma") and his stitches didn't heal smoothly so we joked that "Mommy has a zipper-neck just like Josiah" and he was okay with that.

We laugh a lot with them and we hug and show/tell our love and affection often. I don't think the reassurance from that stops with children--we all need it--but it's a definite part of their acceptance of tragedy.

Alex sounds like a very aware child to ask a question like that. I think eye to eye focus and an honest and simple discussion of the situation (with descriptions of what things will look like at different stages) might alleviate his fears.

I've come to believe, after observing my own and others' children's reactions to my condition, that we don't give enough credit to children's ability to comprehend. But I want to emphasize that this should be approached with much caution due to a child's vivid imagination and the need for appropriate age/maturity adaptation. We let our boys know that any question they had was fine, they wouldn't hurt our feelings, and we let them know that we were the best source for their answers--not their friend or some other adult. We didn't want well-meaning but/or ignorant people misinforming them.

Just like with us, they fear what they don't know and understand. If we help them understand they're less likely to fear and often more likely to want to be part of the solution. I hope that's on the right track to helping!

Ruth

Am thinking about the "what things will look like" part of your post. John is apt to come home with a trach [Alex is familiar with the peg] and I may try to find a picture of one for him before we leave. Thanks, Ruth for the discussion. Amy