Home         Forums  

Go Back   Marrowforums > Community > Living with Illness
Register FAQ Search Today's Posts Mark Forums Read

Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Jul 27, 2008, 10:38 AM
Jill2008 Jill2008 is offline
Member
 
Join Date: Jul 2008
Location: Redding, CA
Posts: 84
What do we tell our 14-year-old?

I was recently diagnosed with MDS but we have decided to hold off on telling our 14-year old daughter until we gather more information about the bone marrow transplant and when it will happen. She is trying out for the volleyball team at school in a couple of weeks and we're afraid if we tell her she will not give her 100%. This means alot to her. She knows I am not well, but doesn't know of the diagnoses yet. The question I have is how much of that information do we share with her when the time comes?

Jill
__________________
Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
Reply With Quote
  #2  
Old Sun Jul 27, 2008, 05:08 PM
Dick S Dick S is offline
Member
 
Join Date: Jan 2008
Location: Florida
Posts: 189
I would wait until you have all the facts and the timing pretty much ironed out and when it won't interfer with her activities, then I would tell her everything. They are part of the family too and kids are pretty resilient, I know mine are. Good luck and thank God that you can get a transplant. I'm 73 and it's out of the picture for me. We'll pray for you.
"That which does not kill us, makes us stronger."
__________________
Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
Reply With Quote
  #3  
Old Sun Jul 27, 2008, 08:29 PM
LynnI LynnI is offline
Member
 
Join Date: Jun 2008
Location: Ontario, Canada
Posts: 97
Hi;
I have a 15 yr old son and I too have recently been dx with MDS. When I had all the info, I told him everything. I especially told him that I was very optimistic, yes it was scary and that I was scared but also very positive and confident in my Dr.s. I told him that myself or his Dad would answer any questions that he had to the best of our ability, if or when he choose to ask those questions. I knew he need so time to come to terms with it, just as my Husband and I did when we found out. A few days later, he started asking questions.

Take care,
Lynn
Reply With Quote
  #4  
Old Mon Jul 28, 2008, 12:20 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,373
How and when to explain a serious disease to children is a very personal decision. In my opinion, parents should outline the basics without sugarcoating it and answer questions as they come up, rather than keeping the information under wraps or providing too much detail. Children are very perceptive and will know something is wrong in the family without your saying anything. If you don't explain what is happening, they can easily assume the situation is worse than it is or even think that it is their fault. If we as parents express our concerns in a confident way, our children will be less worried than if we're being apprehensive and secretive. Children aren't mind readers and they don't see things the way adults do, but they follow our leads.

What we tell our kids about an illness has to be age appropriate, of course, and their reactions will often surprise us. Children, even teens, know they depend on us but their first concerns are often about how they will manage if their parent is sick, e.g. "If you're in the hospital, how will I get to school?" If we answer their initial questions, they'll come up with other questions at their own pace, and that avoids overwhelming them with details or telling them something at the last minute without giving them time to absorb it.
Reply With Quote
  #5  
Old Mon Jul 28, 2008, 10:00 PM
LynnI LynnI is offline
Member
 
Join Date: Jun 2008
Location: Ontario, Canada
Posts: 97
Jill;
I told our son of your situation and asked him how he felt we had handled telling him. Asked him if he had any thoughts or advice on when or how to share that kind of info.
He knew that I was sick, just as I am sure your daughter knows, he said that he over heard bits and pieces of conversations and it had him scared.
He said that he also was very much aware of the stress and concern that his father and I were going through.
He said that when he was told it was a relief to know what was going on, instead of where his imagination was taking him.


Good luck and take care
Lynn
Reply With Quote
  #6  
Old Tue Jul 29, 2008, 08:33 AM
Jill2008 Jill2008 is offline
Member
 
Join Date: Jul 2008
Location: Redding, CA
Posts: 84
Thank you!

Thanks to all of you for your advice. I want to tell her now before she hears it from someone else but my husband wants to wait until after we meet with the Bone Marrow Specialist in two weeks. He feels we will have more information then and will be better prepared to answer her questions about the transplant should they arise. I know he is also concerned about telling her before her tryouts but keeping it a secret is killing me. Wish me luck keeping this under wraps for two more weeks!

Jill
__________________
Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
Reply With Quote
  #7  
Old Mon Sep 29, 2008, 01:30 PM
JulieC JulieC is offline
Member
 
Join Date: Sep 2008
Location: Virginia Beach, VA
Posts: 5
Jill -
Did you tell your daughter yet? This was all rather interesting because my husband and I have been wresstling with telling our 3 daughters too. We finally told them last night. They have known that my husband is sick but they have not know how things have changed. He has had Non-Hodgkins Lymphoma for 10 years so the treatment and dr appt is not anything new to them. But we told them how things have changed and that their father will need a BMT in the near future and it is going to be hard and scary for everyone but he was optimistic that it would all work. Being different ages we started talking to the 12 yo and then the 8 yo came in on her own after a bit and we filled her in. Our 6 yo has different concerns. Like someone said, the kids here the whispering or bits of conversation with others and they know something is up. I feel a tremendous weight off now that we have told them and we can face this as a family. I know the questions will come in a bit as it all sinks in. We have always been honest about things in our home and will answers the questions the best way we can for their ages.
Best of luck to you and your family.
__________________
Julie, husband dx 7/08, RCMD monosomy 7 secondary from NHL (dx 11/97), started Vidaza 8/08,
Reply With Quote
  #8  
Old Wed Nov 12, 2008, 11:27 PM
Jill2008 Jill2008 is offline
Member
 
Join Date: Jul 2008
Location: Redding, CA
Posts: 84
Julie,
Sorry it took me so long to respond. I haven't visited Marrowforums in awhile. We did tell our daughter everything once she made the volleyball team. She was somewhat aware there was something going on already so it wasn't a huge shock. She took it pretty well and had many questions. She talks about it with her friends at school and lets me know that they are praying for me. Going to church has also given her a chance to talk to others about her concerns.
My SCT has been put on hold for now which is a huge relief. I am looking forward to spending the holidays with my family and friends.
Is your husband scheduled for his BMT yet? I wish him all the best.
Jill
__________________
Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
Reply With Quote
  #9  
Old Thu Apr 19, 2012, 10:39 AM
brniii brniii is offline
Member
 
Join Date: Apr 2012
Location: WI
Posts: 3
I appreciate this post....I was diagnosed AA yesterday and telling my husband was hard enough..and he had lots of questions..now we are awaiting two more tests before we sit down with my daughter who is 11 and tell her. I'm considered moderate and not starting any treatment at this point, just being monitored....but I want to make sure those close to me understand and know should things take a turn. Thanks for sharing because I would have missed talking about key points with her had I not read this post.
Reply With Quote
  #10  
Old Fri Apr 20, 2012, 04:56 AM
SLB SLB is offline
Member
 
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
this is a tough one isn't it? my children are a lot younger (age 4 and 7) but unfortunately a routine blood test landed me in hospital the next day. We told the kids basically straight away, that is we told them that "my blood was sick". As they have asked questions I have given more information in very general terms (one night when asked I told them my marrow isn't making the blood properly.. I said sort of like if you bake a cake and leave out the sugar would the cake taste right? I said for some reason my marrow was getting the recipe wrong! not sure if this was the best analogy but at 7 he seemed to understand this). But have wondered about how much is too much information? I have just tried to stay honest in all my answers handing out little bits of information the more they have asked. I just started on vidaza this week and because I am a ""stay at home mum" at present this has meant some changes in their normal routines. What have other people done in this situation?

Sharnie
36 yo. MDS ~ RAEB 2 13% blasts. 1st rnd vidaza 16/04/12. meeting with transplant team next week.
Reply With Quote
  #11  
Old Fri Apr 20, 2012, 12:04 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,373
Sharnie,

I think the explanations you mention above are excellent, and that they key is to answer questions as they come up.

Kids are naturally focused on a very narrow view of the world, short term and personal. If you say you'll need to be at the hospital on Tuesday and their first question is "Who will take me to school?" rather than "Will you be OK?" it's just a normal reaction for a child. And probably an easy question to answer!
Reply With Quote
  #12  
Old Sat Apr 21, 2012, 12:22 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 669
"How to Help Children Through a Parent's Serious Illness" by Kathleen McCue is an excellent resource on this topic.
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
1 year birthday! Tii Transplants 10 Sun Dec 15, 2013 11:22 PM
16 year old daughter with PNH and AA RosP Tell Your Story 2 Sat Oct 26, 2013 08:40 AM
16 year old tired for over a year bone marrow failure Gregsgrouo Tell Your Story 10 Wed Aug 28, 2013 01:26 PM
6 year old son newly dignosed... Questions Bolinger Pediatrics 15 Wed May 8, 2013 03:59 PM
Good news 1 year after ATG paulaespada AA 2 Thu Jun 18, 2009 05:34 PM


All times are GMT -4. The time now is 03:53 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org