How do we tell our teenage son?

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enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 10/26/2007 2:56 PM (GMT -7)   
Hi All,
 
      It's been a couple of months since my last entry.   I needed an emergency hysterectomy on 8/31/07.   (It's been a very rough summer!)   After eight weeks of resting and healing, I am feeling physically strong.    But with Dave's prostatectomy scheduled for November 5th, I'm having a hard time holding it all together.    And I need help.  
 
       Our 14 year old son has some very serious conditions including Asperger's Syndrome (an autism spectrum disorder), OCD and schizoaffective disorder.   He's emotionally about a 7 year old.   He's in therapy and has a great psychiatrist to help him learn to cope with every day anxieties.    He's in a special ed program and just began his freshman year in high school.   For these reasons, with his providers blessings, we did NOT tell him about Dave's cancer.   
 
       The good people at Mass General, Dr. Donald Kaufman, Dr. Young, & others led us to Dr. Francis McGovern, who specializes in "nerve sparing" procedures.   They dropped him from a Gleason 7 to a Gleason 6.   Still, everyone agrees he needs surgery.  We are very hopeful.   Nevertheless, we are frightened and anxious.   My husband recently had his hair dyed.   I thought, okay, if it makes you feel good, do it.   He said, "I just want to look good in the box."     I tell him that he promised to love and cherish me and that I have no intent of getting the short end of that deal.   Still, all the joking and hugs can't hide our fear.
 
       Today I called MGH and asked for advice about our son.   A very kind social worker called me back.   I don't know why but I cried so hard I could barely breathe.    She was patient and managed to figure out what I was saying between sobs.   She said he needs to hear this from us.    It's too risky that he'll hear it from someone else. 
 
      Under her guidance, I did call both my son's therapist and his psychiatrist and told them we plan to tell our child on Saturday November 3rd, 2 days before the procedure to give him time to process it, but to also know that Dave will be "cured" within the next couple of days.    
 
      But what do we say?     How can we prepare?   He's had teachers in the past with breast cancer.   His therapist has a 5 year old son with leukemia.   My mother had a patch of skin cancer on her arm this summer.  Our son asked me, "Memere hugged me, will I get cancer?"   I told him no, naturally.    But for several months, he wouldn't hug my Mom.
 
        I welcome any and alll advice.
   
        A husband with cancer and a son with Autism and associated mental illness.   How did we end up like this?
 
        Thanks in advance for your help-
        "Go Sox!!!"
        Ellen 
 
     
 
     

Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 664
   Posted 10/26/2007 6:10 PM (GMT -7)   

It is hard for me to imagine how lively things are around your house.  We can only wish the best for you and your family.  You did not mention if your autistic son is your only child. If he has siblings, it is possible that he is already aware and  concerned.  It would be hard for him to not sense the turmoil that you are living through. The very kind social worker seems to be very intuitive. You know your son best, but I would think letting him know sooner would give him a chance to deal with his fears.

I wish for you the strength to get through this difficult time.  I know that I have always lived with the thought, that "it will get better, I will get through this, This too shall pass.". I would imagine that you chant that every day.

This too shall pass. 

Lifeguyd 


 
Biopsy 10/16/06
T2A,  PSA 4.7
Gleason 4+4=8 right side
adrenocarcinoma of prostate
DaVinci Surgery 01/16/07
Post op report,confirms Gleason4+4=8
no extra extension/invasion identified
age 65
no continence problems
Back on the golf course...
90 day PSA  less than 0.01 (undetectable)
Six Month PSA still undetectable
ED problems- 20mcg Caverject and 50mg Viagra-success
 
 
 


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 10/26/2007 6:35 PM (GMT -7)   
Thank you for your response and kind words of encouragement. I love the note that you're "backon the golf course...."

We have only one child. Raising any child through the teen years is an adventure. His special needs make it more challenging. I'm part of a wonderful support group to handle the "typical" issues. But this has me buffaloed. Some say don't tell him. Others say he needs to hear it from us. Some problems have no solutions. This is probably one of them.

Yes, this shall pass. But I don't want my actions, or lack of action, to make things worse for my husband or my child. Are you aware of any books or resources on how to tell your child the news? I can try to make modifcations to accomodate his special needs.

Again, thanks.

Ellen
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 10/27/2007 10:26 AM (GMT -7)   
Ms. Ellen,

Many years ago, I worked in Special Ed for 4 years.
Now, for the last 18 years, I have taught elementary age children every Sunday in Church. 
(I've only missed a handfull of Sundays in 18 years - half of them for my prostatectomy...)

Specifically I teach the 4th & 5th grade.
The advantage of this age group (or emotional and developmental level) when explaining sensitive issues is that the simplest truth is the easiest

They will ask questions. Short honest answers are best - and actually expected.

The challenge here is your "great unknown" of how the post-surgery biopsy will turn out.
   Compounding this unknown and its emotional roller-coaster that all of us here have ridden or are currently riding, ...
...   compounding this emotional state is your recent hysterectomy and its impact on your emotions.

I mention these emotions because this is what you must try to keep out of your discussion with your child on this topic.  Your child undoubtedly will read the stress and worry in your voice, posture, eyes, etc. 
Many special ed. kids are more perceptive in these channels than mainstream children.

So, my experience suggests to perhaps just say for now (with all honesty) that Daddy is sick and visiting the hospital to try to make him better. 
You are not sure what it is exactly but will tell him later when you find out.

By the time you have the post-surgery biopsy explained to you,
    you will be comparative veterans of the emotional swings that come with this territory (both radical prostatectomy and hysterectomy)
    and have a better picture of what you are facing and can lay it out in simple and least possible emotional terms

Children at this level that are given this type of information will of course want to know if Daddy will be all right? 
More importantly they want to feel secure -
   - for example that they will not be left alone or in put in unfamiliar circumstances when anything suggested frightens them.

A brief example of why I personally teach at the elementary level and not teenagers might help encourage you some in your situation:
   When the kids read in the scriptures;  "....and he knew her...." ,
                         they ask "Teacher, what does that mean?"
   Without flinching, I don't bat an eye or smile too big and say:
        "They spent the night together and 9 months later they had a baby."
They say "Oh."  or "Gross" or some such thing and the subject is changed and never brought up again....

Looking on the bright side of your situation, the ability to give simple answers is much easier than say, explaining the male reproductive system to two teenage daughters.

Be honest.  Keep it simple.  Wait for a time of comparative calm and more knowledge.

Your Friend,

CCedar
ICTHUS!

2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/27/2007 8:55 PM (GMT -7)   
Ellen,

Mom, Dad and your son's close associated care providers (teachers, therapists) know your him very well. You are the best judge of what kind of reactions to prepare for. It does sound as though you kind of know what to expect and know how to gradually work through the more difficult stiuations. Asperger's is predictable to a point in that you know your son's usual reactions. Tell him close to the date just as you've suggested. Good idea.

If our daughter/son were younger when we needed to tell them, I would have chosen something like this to say:

Dad needs an operation and will be at the hospital for a day or so. There is a small tumor, a growth, in one very small part of his body and getting it operated on to remove it is the best way to make sure Dad stays healthy. After a little bit of rest he'll be just fine.

Other than elaborating on prostate cancer and what it is, this is pretty much the way we told our kids. Our's were older at the time. We could say a lot more without confusing our daughter. Her LD limits how much she can comprehend at one time so we take the easier to understand approach in doses she can process.

God Bless, Swim
 


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 10/28/2007 9:27 AM (GMT -7)   
Thank you both for your advice!!!

Our son has a very high IQ but a very slow processing speed. Very uneven development. He can hook up a home theater system but can't tie his shoes. Yes, we know what to expect. That's probably why I'm dreading it so. He has very high anxiety over simple things. Short, honest answers are always the best. I've been advised by you and others to show little or NO emotion and be very matter of fact. This will be very tricky for me. I think I'll need to rehearse this alone or with a friend.

I really appreciate your help. I'd been distracted by my own health this summer and November seemed so far away. I enjoyed some time living happily in denial. But November begins this week and the surgery date is a week from tomorrow. Dave is VERY grouchy and his ability to cope with our son's behaviors is pretty much gone. I play referee and do the lion's share of caregiving.

I wonder, when will things feel normal again?

Trick or treat starts in 30 minutes here in beautiful Manchester, NH. (Sunday afternoons may be safer, but not nearly as much fun....)
Got to run for now before the doorbell rings non-stop!

THANK YOU!!!
Ellen
Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 10/29/2007 10:32 AM (GMT -7)   
Ellen, for your sake, I'm glad the Red Sox won. :) I was cheering for the Rockies only because they were the underdogs.

I think you have received some very good advice here. keep it simple and give him lots of hugs. yes, Dave is probably grouchy because he is afraid. in a week the surgery will be over and you'll all be on the way to recovery. who is going to stay with your son when you are at the hospital with Dave? Dave will come home with a catheter so your son will be asking questions about that. I don't think you can hide it very easily. do you have an option of him staying somewhere else for just the first few days? then you and Dave could just concentrate on his recovery. that's a good idea to rehearse with someone because like you said, you're very emotional about this and your son will pick up on that, especially when you start crying. hang in there! it will get better.....kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!


enough already....
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 10/29/2007 12:41 PM (GMT -7)   

Hi Kat,

      Thank you for your support and suggestions.     I like your ideas a lot.       

       My husband works in Boston, so he does all of the driving when we go into the city.  I will be out of my element behind the wheel.  And I'll be distracted.   He needs to be at MGH at 6:00AM and we need to leave our house by 5:00AM.  We'll be up very early and then all the fun begins once we get there.   We were told it's a one night stay, but I'm sure I'll be very tired.    That's another good reason for me not to drive back and forth!

       I've asked my folks for help.   My son will feel better being with me.  That's fine.  I want to be there for him.    My Dad will join us and help me with my son and with whatever else may come up.

       I've rented two rooms at a hotel near the hospital for us.  (My Mom has volunteered to remain at home and care for our pets.)   

       We're planning to have a talk with our son on Saturday if he's in a "good place" or Sunday no matter what.  I spoke with a doctor on MGH's PACT team.  (parenting through challenging times)   He too had some great suggestions. 

        I am so grateful for you and everyone at this website for all of the open and candid posts.   It makes it easier.

        Take care-

        -Ellen

        Congrats to the Sox and GO PATS!

 

      

 

 


Supportive wife (age 46) of Dave (age 50)
diagnosed 7/19/07  Gleason 3+4
 


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 11/2/2007 11:07 AM (GMT -7)   
Ellen - I just wanted to wish you the best this weekend. I'm sure everything will be fine with your son. kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 11/6/2007 9:58 PM (GMT -7)   
Dear Ellen
 
I am a little late in offering you advice so perhaps I can offer encouragement.  I assume by now that your husband has had his surgery.  MGH is a wonderful hospital--that's  where I had my treatment.  My married daughter lives in the Boston area--it is a great town.  It was wonderful to see the Red Sox win the World Series, although I am not a Bostonian.  I hope, if you broke the news to your son about his Dad, that you emphasized that his Dad is expected to be as good as new after treatment.  It sounds like your husband was in an earlier stage of PCa with an excellent chance of being cured.  Life is not always fair. Some people in life have to bear bigger burdens than others and your family has certainly borne more than their fair share.  May your husband have a speedy recovery with few side effects.  Younger men often fare better after surgery. May you and your family be blessed with all good things from hereon in.
 
Dave


68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.  First PSA test 7/19/07 (3 months after treatment) was 2.1 or a 70% reduction in my PSA before treatment (this was better than the average expectation of a 50% reduction in PSA at this juncture, according to my radiation oncologist).  The following is a link to My Journey With Prostate Cancer -- Proton Radiation Therapy.  http://www.healingwell.com/community/default.aspx?f=35&m=726381
 

Post Edited (pcdave) : 11/6/2007 10:04:44 PM (GMT-7)


uncledan
Regular Member


Date Joined Aug 2007
Total Posts : 120
   Posted 11/7/2007 9:01 PM (GMT -7)   
Hi, First off no one knows why bad things happen to good people, but I can tell you this for sure. I see compassion and love in your post and can tell you are a strong person. Your husband has got the surgery behind him and now he is on the way to recovery. He is fortunate to have a wife who checks things out and asks the right questions. Hopefully he will catch the positive attitude from you. A positive attitude goes a long way toward healing. Keep the faith and remember all here on this forum are behind you 110%. Good Luck and God Bless, Uncle Dan
Age 67
No symptoms, DRE negative, 10 - 06 PSA 5.44, 01 - 07 PSA 6.47
5 - 07 CT and Bone scans negative, 05 - 07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08 - 14 Dr. Dasari - Baptist Hospital, Nashville da Vinci RAP, five hours surgery
Some right nerve and all left nerve removed,
Hospital discharged 8 - 16
Pathology report Negative margins, Encapsulated, 50% left side
Lymph nodes 2 R & 1 L - Negative, R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
9 - 26 Great PSA 0.000, 9 - 27 Starting on meds for ED
10 15 Dry most of the time, occasional leak (dribble )
Viagra no help yet, will try Lavitra ?

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