Author Topic: Would you spare telling your children of the GK?  (Read 13912 times)

sewnice50

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Would you spare telling your children of the GK?
« on: September 18, 2006, 10:31:02 am »
I was diagnosed 2 years ago with a AN and it is now 1.7cm and growing, it is finally time to zap it.  I  am preparing for the GK.  I told only my husband and my 2 closest friends of the AN 2 years ago.  One of my friends has not mentioned it again and the other does not seem interested either, I think because its a scary brain tumor (understandable).  My husband is scared, I think more than I am.  I have not told my son, he is 35 years old and has a brand new baby.  I don't want to upset his life with this news of a brain tumor, but is that the right thing to do?  I am having GK and am thinking it's not like surgery, no one would know.  I ask myself if it was the other way around, I would be devastated if something happed and I had not known, but I could also see the point of not spreading the bad news.

What would you do?  Would you rather be spared the worry if possible?
Please help me decide.  Thank you all.
Sue

Laura

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Re: Would you spare telling your children of the GK?
« Reply #1 on: September 18, 2006, 10:41:21 am »
Sue

You answered the first question I was going to ask. If your son were going in to have the GK done, would you want to know? I think it is important regardless of whether it’s deemed "surgery" or not that you have your support system. Your son might also lend support to your husband and be there for him to lean on while you are undergoing the treatment. And you know… extra love and prayers never hurt anyone. If you do keep it from your son there might always be the possibility that he would find out later; how would he react if this were the case? Personally, I know I would be livid with my parents if they didn't include me in their health issues.

Ultimately, it is your decision and it has to be the one that allows you to sleep at night. Everyone here will support you, encourage you, and pray for you regardless of your decision.

Laura

Diagnosed August 17, 2006
AN on right side 1cm x 7mm x 7mm
30% hearing loss with no other symptoms
Watching and Waiting
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It's mind over "matter"... even if the "matter" is in my mind

marystro

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Re: Would you spare telling your children of the GK?
« Reply #2 on: September 18, 2006, 11:10:29 am »
I told my 8-year old from the first day when I found out about AN.  He and my husband along with close friends and family have been with me throughout the journey.  It is my choice to let people know.  It helps me tremdously knowing the support system I have around me.  Even my 8-year old is so understanding and this situation helps him learn about many things and grow up.  It actually is better overall for everyone around me not only for myself.  I did hold back in telling my mother who lives overseas.  I figured there was not much she could do and I did not want to worry her.  I did tell her after the treatment and she was okay to learn that it was a simple procedure and the tumor was benign.

Ultimately it is your choice to decide if you'd like to share with your son or not.  If he would find out somehow, I would consider letting him know ahead than have him find out some other means.  Just my thought.

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Sue

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Re: Would you spare telling your children of the GK?
« Reply #3 on: September 18, 2006, 11:20:47 am »
Hi Mary,


Wow, how different we all are. I was blabbing to everyone about my AN!  My family knew about my symptoms for over a year, so they knew I was seeing doctors and such, so it didn't occur to me to not keep them in the loop.  I thought at first you were talking about a small child, so that might make sense...but 35?  My son is 33, and after my husband, he was the first one I turned to.  Your decision, but in my opinion, they shouldn't be left out. 

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

marystro

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Re: Would you spare telling your children of the GK?
« Reply #4 on: September 18, 2006, 02:23:25 pm »
No, my child is 8 year old.  I share everything with him.  He is totally cool about that and is my rock!

I think Sue's child is 35.  I did not tell my mom who is 75 until after treatment however.  She lives too far away to worry (Hong Kong).

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Sue

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Re: Would you spare telling your children of the GK?
« Reply #5 on: September 18, 2006, 03:09:15 pm »
ooops, 'scuse me.  I did mean to refer to the first person that posted..Sue.  Thanks for the correction!

The other Sue
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

shoegirl

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Re: Would you spare telling your children of the GK?
« Reply #6 on: September 18, 2006, 03:15:24 pm »
I told my children 5 and 2.  My 5 year old understands more and my 2 year old knows that Mommy has a boo-boo in her head.  They know when I go to the dr. etc.    They were so sweet to me during my treatment.  They are my everything and I thought I should tell them something incase for some reason I had some side effects.  They pick up on things anyway, and I wanted to be honest (without worrying them of course).  :)

 Ã‚ 
left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

marystro

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Re: Would you spare telling your children of the GK?
« Reply #7 on: September 18, 2006, 03:50:27 pm »
Alex, my 8-year old, even went to the treatment center with me.  He saw the entire process on the monitors (laser on, laser off, etc.).  At the end of the last day of treatment, he came in the treatment room and took pictures for all of us.  To him, it was a field trip and he learned from the experience.  To me, he provided comfort knowing my family was with me.

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

MLB57

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Re: Would you spare telling your children of the GK?
« Reply #8 on: September 24, 2006, 05:20:41 pm »
Hi Sue--I understand your reluctance to tell your gown son who has a new baby--I have a 35 year old son and 29 year old daughter--I knew about my AN re-growth since June and also knew my son was proposing to his girlfirend and having a party with  us all afterward (happened in Aug) and then it was a vacation with them in Maine and now they are in the throes of planning a wedding next JUly 15. I waited until today to tell them when I viisited with my son and fiance and my daughter (all live in RI)--I told them I had done hrs of research and have a consult in RI Sept w/Dr Noren for GK.. We cried together and I explained everything I knew and my choice for GK and they understood but wished I had told them earlier so they could  be there for me emotionally as they knew I went this "all alone" since I have known. I do not regret waiting until now to tell them as I honestly didn't want to burst their bubble as this is m yson (and his fiance's) first marriage and I am so happy for them. So this was the time to tell them and both wanted to accompany me to the consult but I agreed with my son who, due to his position at work, can take off to be with me. You really should tell your son--he is not a child and I think he would feel betrayed if he found out later and would ask why you didn't tell him!!! He really needs to know-after all he is family.  That's what family is all about to share and care about one another.

And my best wishes for your treatment!! Le tus know how you are doing!!! 8)  Regards. Mar from MA
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

Joef

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Re: Would you spare telling your children of the GK?
« Reply #9 on: September 26, 2006, 02:32:56 pm »

at 35 years old .. he should know .. and 5 years old .. the "boo boo" is a great idea, it should be at thier level of understanding ...
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

katmumof3

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Re: Would you spare telling your children of the GK?
« Reply #10 on: September 26, 2006, 04:26:17 pm »
i can certainly understand your dilemna here, my children are  still vrey young and i chose to not tell them, simply because i knew they could not fully understand it, and it would cause them unnecessary worries if they knew i was sick.  Personally i think as a grown man it is something he would want to know, perhaps if you told him with a sugar coating so as to not worry him too much :)  lol it's what i would do There is a huge difference in reaction between 'benign brain tumor' and a mass.
2.5cm AN removed 26/4/06 retrosigmoid
awaiting follow up MRI

Windsong

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Re: Would you spare telling your children of the GK?
« Reply #11 on: September 26, 2006, 05:33:19 pm »
Hi Sue,

This is such an individual thing isn't it.

I found out about my An on a weekend during which I was giving a small party for family. A doctor of mine suggested not saying anything then.

What I remember ( now) is feeling so awfully alone when what I wanted to have was some hugs.

When I did tell all family members including my son, I down-played it. For me, it was not a good idea. My son picked up on a "word" i let slip while driving me to an appointment later and was most definitely vocall and not happy about having been kept in the dark. (and he was driving).....

Think about this and be smart.

Windsong



I was diagnosed 2 years ago with a AN and it is now 1.7cm and growing, it is finally time to zap it.  I  am preparing for the GK.  I told only my husband and my 2 closest friends of the AN 2 years ago.  One of my friends has not mentioned it again and the other does not seem interested either, I think because its a scary brain tumor (understandable).  My husband is scared, I think more than I am.  I have not told my son, he is 35 years old and has a brand new baby.  I don't want to upset his life with this news of a brain tumor, but is that the right thing to do?  I am having GK and am thinking it's not like surgery, no one would know.  I ask myself if it was the other way around, I would be devastated if something happed and I had not known, but I could also see the point of not spreading the bad news.

What would you do?  Would you rather be spared the worry if possible?
Please help me decide.  Thank you all.
Sue

Kathleen_Mc

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Re: Would you spare telling your children of the GK?
« Reply #12 on: September 26, 2006, 05:58:17 pm »
Sue: My two cents...... both my parents have gone through treatment for serious health issue's, although I was told before the treatment I was left out for a period, only until they got "the full scoop", and that was appropriate...even parents need time to think and get over "the shock stage" on thier own. When they did tell me I was glad they did, it allowed me time to adjust to the idea of them being ill before they had treatment......even as a grown child it's hard to think of looking after them vs them looking after me!
With my being a nurse I was greatly involved in my father's decision of treatment as he had options and I helped him "think it through" as I could easily give him the "what if's" to think about before making his decison, also I gave him more questions to ask the doctor before going ahead (that he hadn't thought of).In my mother's case there was nothing to discuss, only one treatment option but I was glad I had forwarning.
It is a personal decison and yours to make.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

matti

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Re: Would you spare telling your children of the GK?
« Reply #13 on: September 26, 2006, 06:45:59 pm »
Sue - I totally understand where you are coming from. Being parents we want to spare our children, no matter how old they may be, from pain and worry. My boys are 23 and 20, but at the time of my diagnosis and surgery, they were 12 and 15. I told them everything from the get go and invited them along on doctor visits if they chose so. They wanted to know everything and did not want to be kept in the dark and told me many times not to hide anything. I recently discovered a lump in my breast and had been keeping it a secret, except for my husband. I did not want to say anything until I knew for sure what was going on, but my boys found out about it, got together and confronted me. Yikes! being on the other end of the finger pointing is not pleasant LOL

I know how tough this is, but I think your son should know. Keeping you in my prayers!

hugs,
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Battyp

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Re: Would you spare telling your children of the GK?
« Reply #14 on: September 26, 2006, 07:25:58 pm »
Things never happen at the best time and this is surely an individual decision for your family but I'd say tell him.  I'm very close to my son and asked his opinion and he said he'd want to know, his concern was upsetting the new mom and causing post partum depression.  What does a 16 year old know about that?  :o  All my best during your treatment!