talking to your children about AN

[becknell]

This has increasingly been a concern of mine. My husband is scheduled to have surgery Aug. 22. We have two children, a son, 10, and a daughter, 7. I gather from your posts that a number of you have children and dealt with child issues in the process of treatment/recovery. My question: What were their ages? How much did you tell them? What were their reactions? Any problems? How did you deal with them in the recovery period?
What we have done so far: We waited a week or so after diagnosis, until we had absorbed the impact, to say anything to them. Then we just told them daddy had something that was affecting his hearing and he had to get it fixed. We did not make a big deal out of it. At first, that was enough. Gradually, they asked questions, mostly by the 10-year-old. We answered them simply, but honestly. He asked about surgery, and we talked a little about that. Was it serious? I told him yes. He mentioned "cancer" and I told him all tumors are not cancer. The 7-year-old's main concern is that mommy will be away from home with daddy for a while and she'll have to stay with Granny. I'm wondering if they will get more concerned as the surgery approaches. They will be in school then. Thoughts? Experiences? Advice?

[Kathleen_Mc]

My own children have always known I have a "bump in my ear" and that one day the doctor will have to take it out, currently my son is 6 and my daughter is 3. I had my orginal surgery long before they were born, they have essentially grown up with the knowledge that Mommy's left ear doesn't work and that Mommy just looks this way (facial nerve cut), one day a friend of my son's made fun of the way my mouth moves....he was really hurt because this is just the way I am, he is very acepting of all people looking different.....by the end of the day I was sitting with these two 6 year olds explaining that I had a bump in my ear and had a choice to make...have it out and look like I do and be half deaf or go to heaven....I explained to them I chose to have the surgery and live so I could go on to meet and know great children like them....my son was unfathumed by the conversation because it has always been knowledge to him...always given to him at his level and his questions always answered straight out, never evaded....the other child and his mother and myself were crying but he was crying because he was sorry to have made fun of me for something I can't help.
Now going back to when I had the tumor out in the first place, my sister's children were young, let's say 4 and 6 for conversations sake, my sister doesn't handle "bad things" well, she tends to hide her head in the sand, she told the children while I was in hospital that I fell on the ice and banged my head.......don't know how she explained the great change to my face but anyways....moral of the story they eventually found out the truth from thier cousins who's parents had told them the truth....kids always find out the truth...I'm not sure but I bet this made them feel betrayed and somewhat distrustful of thier mother in some way for some period.
I would think your best bet is to be honest with them, answer all thier questions, be sure keep contact with them while your away, with both of you by phone and don't be afraid to let them know how you feel....sad, angry, afraid but in limited amounts and let them know it's o.k. to feel that way.
It's not easy dealing with a brain tumor and it's even harder when you have children to consider.
 Your in my thoughts, Kathleen

[Snowball]

My children were 6 yrs, 3 yrs, and 1 month when I had the surgery.  We found that being honest with their questions was the best thing.  We gave them basic information, and let them ask questions to fill in the blanks.  My oldest's biggest concern was that I would die in surgery, and we told her that while that was possible, the things the doctors were more concerned with were hearing loss, loss of facial movement, etc.  We also prepared them that I'd come home missing a portion of my hair.  That upset my 3 yr old the most - you're beautiful hair is gone!  Since then I've had follow up with Gamma and also a second surgery.  Kids are very resilient.  We've found with my kids, that as long as we've remained honest and open when answering their questions, that they have had very little fear in what's been happening.  Good luck. 

[Lisa Peele]

We have 4 young children, and I stay at home with them.  At the time of my surgery, they were 8, 7, 5 and 2--two girls, the oldest and youngest, and two boys in the middle.  We were so concerned about how to handle this with them.  I called our pediatrician for help after we had a chance to absorb the news that I would be needing surgery.  My husband and I felt the same way she did (and like previous posts have said):  young children don't need alot of information at first--just broad strokes.  Then let them ask questions as it occurs to them to do so.  No one knows your kids better than you!  That said, our experience was that with this, as with most everything, being honest (in a loving, positive, non-scary way), and explaining things in simple terms, is best.  Kids are so wonderful in so many ways!  They are individuals, and each respond to this situation in their own unique way. 

We told our kids that something had grown behind my ear that wasn't supposed to be there (they did not hear the words "brain tumor" until recently)--this growth was what had been causing me to have a hard time hearing, and it had to be taken out.  We said that mommy and daddy would be gone for 2 1/2 weeks, but that we would call every day (we went to CA for treatment), and that I might look funny when I came home (sortof like I do in the morning--no make-up, in PJs most of the time, and missing a little bit of hair).  We told them I would lose my hearing on that side, but that I could still hear perfectly out of my other ear.  We said I would need help for most of the summer, and that they could help me get better.  We really did not know what we would be facing when I came home, or what I would look/feel like, and figured we would deal with that when the time came. 

Our oldest took the news very well.  She handles most things in a mature and positive way.  She said that while she knew she would really miss mom and dad, she was also confident I would be okay.  Our son, who was seven at the time, is a thinker and very sensitive.  He was worried that the doctors were going to "crack my head open," (and we did not discuss anything about the procedure, or even that they would need to go through my skull to get to the tumor...he figured that out on his own).  I'm glad we kept him talking, because it turns out he thought that I would be awake for the surgery and in pain.  He cried hard the whole first night after we told him.  It was heartbreaking.  We stayed up together that night and watched the middle-of-the-night replay of the Stanley Cup game.  We talked and hugged.  By that point, he had settled down some, and was less worried when he understood that I would be asleep for the procedure, and that my doctors were really good.  He asked some deep questions, though.  What if I lost my hearing in the other ear when I get older?   Does it mean I would be deaf?  Exactly where is the growth... etc. Our five year old didn't really seem to be paying attention the day we told them what was going on.  The next day after school, he came in the door and said, "Kyle (his older brother) thinks you're going to die.  Can I go play with Michael?"  By the time we left for surgery, though, he was more concerned and was sad we would be gone for a few weeks.  Our two year old did not understand at all.  It was wonderful and comforting to see how "normal" things were with her. 

They helped me pack, and made artwork for us to take with us.  They helped me pick out hairstyles/accessories I could wear to cover the missing patch of hair from the back of my head.  They helped me write out activites and meals for when they were with Grandma and Grandpa while we were gone.  We drew "thank you" pictures to hang by our front door for all the people who dropped off food, etc.  In short, we involved them in the planning, and in my recovery.  I spent so much time in the week before we left just sitting with them, loving them, listening to them.  On the porch, on their beds, at the kitchen table...wherever.  The "down time" was wonderful and necessary.  I lingered on every kiss, every giggle.  Being close brought them comfort, and it made me happy.

We've talked about what happened last summer as a family many times within this last year.  It's interesting to see what questions develop over time, and with their cognitive growth and maturity.  We've had lots of great discussions about how lucky we are to have each other, and we are thankful for every day we get to spend together.  This whole experience added a new dimension to all of our lives, and is a reminder of what's truly important!

[Pembo]

My boys were 8 and 5, my daughter just shy of 2 when I had my surgery. We told the boys Mommy had something growing in her head and they had to take get it out. That seemed to be enough info for them. They knew exactly who was watching them etc.

Unfortunately my planned 5 days in the hospital turned into 16. I know they were well taken care of, at my parents. And my husband visited often. I learned later that my 5 yr old was very concerned I was going to die. He told this to a family friend and later a psychologist.

Overall, we answered questions as they came up. I did have some discipline probs after surgery and took them to our psych who told us their behavior was common after what I went thru.

The most heartbreaking moment was when talking with my son about my face. We were talking how it was improving and would be normal again and then he asked when my hearing would get better. It was tough telling him that it would never come back.

Be there for your kids. Let other people be there for your kids. You never know when they are going to start talking so be prepared.

Good luck to all of you.

[kristin]

I am a single mother of a now 6 year old girl. I told her that I had a tumor in my brain the size of a tic tac (8mm x 5mm). When she went to school the next day she told all of her friends that her mom had a tic tac in her brain. (The daycare provider said it was a pretty interesting conversation between 5 year olds!) That night I explained to her that it wasn't a tic tac, but a tumor the SIZE of a tic tac. So, the next day we walked into her daycare, she stopped and spread her arms out wide and said "OK, guys..it's NOT a tic tac..it's just a tumor". And that's how it was for her the rest of the time...just a tumor..no big deal!

[MyrnaB]

My children are 37, 33, and 7 (adoption is great since I am 54).  We basically told our son about the tumor from the beginning.  We called it the "bean" that was in mom's head that was bugging my brain.  We told him that the brain doesn't like anything that God didn't put there to start with and the "bean" needed to come out.  Within one week, his teacher (1st grade) said that he was in the library talking to another student about looking up tumors.  Kids are pretty bright these days.  I only spent 4 days in the hospital but used a walker, then a cane until my balance returned.  This was a great concern to him.  I had sinus surgery within two months afterwards.  He worries about me having any other surgeries and he questions me about the future.  My daughter (37) is a nurse so he is use to her talking about medical conditions.  I think the younger children really adjust well when they can help and are included in our recovery.  My son knows now that I do not drive at night.  He is a red head with the anxiety and temperment of a red head.  I do have to say that there has been a change in him since my surgery.  It is like he "takes care" of mom and has mellowed out a lot.  I do nearly everything I did before, but, if I have a headache, he truly understands and tries to help.  All I can say is be honest to your children and include them in discussions on how your are getting better every day.  Good Luck!

[cookiesecond]

Murna,
Was the sinus surgery related to the An?
Lynn

[Kim]

My kids were 19, 17, 15, and 15 at the time of my surgery.  We told them immediately.  My parents were devasted; my kids were incredible.  They are very close, and supported each other immensely throughout the whole ordeal.  I stayed very positive the whole time, but many people reacted with shock and despair upon hearing the news of my tumor and this became tough on my kids.  They dealt with it by educating people about ANs. They came up with creative hair ideas in case my hair was shaved at all (it wasn't enough to say so).  They joked about dividing up my jewelry and clothes.  They laughingly argued over who would get to wear my wedding rings  while I was in surgery.  My oldest arranged to leave college for 3 days and the others 2.  They all spent the day of surgery (12 hrs of it) at the hospital, then went home late that night to take care of the animals and each other.  The hospital gave my family a private waiting room and called them every 1-2 hours with updates.  My kids were allowed to be with me in pre-op. I heard some stories of them goofing around to pass the day and stay sane...!  Our community fed them for 2 weeks, which was great not only because they didn't have to worry about shopping or cooking, but also because it was great contact with a lot of wonderful people.  A very interesting comment one of my kids made to my mother several weeks later was that all 4 of them were so impressed by my husband.  For their whole lives up to that point, I had been the one basically running the household (school stuff, dr appts, playdates, after-school activities, etc) while their dad remained a supportive "aid."  When I needed to check out of my role for a short while, he stepped right in and steered the ship brilliantly, alone. In the end, all of them had written about this experience for school English assignments, and it wasn't until I read their pieces that I realized completely how they had felt through all of this.   They handled it very, very well and I am immensely proud of them--and my husband!

[MyrnaB]

cookiesecond  -  I have had sinus problems for 30 years.  I had my first sinus surgery 11 years ago.  I was having so many sinus infections, etc, when they first discovered my AN that I really thought it was sinus at first.  After I had my surgery, my sinus problem became an uncontrolled infection that would not respond to medication.  So, I had the sinus surgery and have since gone on allergy shots.  Personally, I feel it is connected in some way.  When I cough or sneeze, I feel like someone hit me along side the back of the head with a bat.  The pain radiates from where my incision is to above my right eye (mine was a right side AN).  I haven't heard a lot of people relate this to sinus, but I truly believe it is in my case.