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Need help for my young children at home coping with my cancer

christinav80's picture
christinav80
Posts: 3
Joined: Aug 2016

Hi everyone, 

I was diagnosed with Large Diffuse Mediastinal B-Cell Lymphoma last June and underwent 6 rounds of R-EPOCH chemotherapy. I have 2 children at home who have been coping with me having this disease. They did very well, and maybe because my husband and I felt that being completely honest with them about the entire process was the best way to go. They are 10 and 14 years old, so they aren't too young, but young enough to be dealing with a parent with cancer. My last PET scan showed that my Cancer was not gone so I will be starting R-ICE chemotherapy in a few weeks followed by Autologous Stem Cell Transplant. My little one is having a tough time with this because he knows that I won't be home for 6-8 weeks and they won't be able to visit me daily the way they were able to during R-EPOCH. 

So my question; do any of you have any suggestions or advice for young children coping with a parent fighting cancer?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3363
Joined: May 2012

Yours is a tough one, Christina.

My kids were 14 and 16 when I was diagnosed -- middle schoolers.

We were encouraging and told them that things should go ok eventually. As postive as we could be while still being honest.  But they were afraid, which is inevitable.  Some good things are as simple as TALKING TO THEM DIRECTLY.   Give them "Question Time," when they can ask anything they want.

Creat "Jobs" for them related to your illness.  Let them choose their particular "job."  One can clean the kitchen for mom, one can take care of the dog. Anything, and let them know that the purpose of the job is to "help mom get well."

Just some ideas. I learned years later that we did not talk enough with the kids. We talked some, but not enough. They asked questions later that surprised me, things I thought they knew.

 Keep communication open. Age-appropriate, but open.

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Christina this is so hard especially when children are involved.  Mine were 12 and 15 years old when I was diagnosed.  In the beginning I not to tell my children, I wanted to wait until I had a handle on things for my life was a bit of a world wind at the time.   My father was diagnosed three weeks after I was.   Regrettably we were both diagnosed with non-Hodgkin's lymphphoma, stage four but my father was visibly not well.   I knew it would be difficult for my family and my children to differentiate follicular cancer and mantel cell lymphoma, it was just too much too soon.   Being my father's only daughter I had to protect him.  I kept my secret from everyone and pretended things were fine.   A few months past, I realized it was too much of a burden for me so after seeking guidance from my local priest I found the confidence to tell my children. I knew this was going to be a journey and in order for them to trust me I needed to tell them everything.   This may sound strange but because of my situation I felt God trusted me with "this" and somehow I was going to make him proud.   I'm not sure if I did but I did try and I continue to be a warrior and to set an example for my children.

My story does not compare to yours. As I hid my cancer, I remained the same.  I did not lose my hair or have to have a stem cell transplant.  My children's terror was my father.  He passes away just after 15 months.

My life style changed.  I stopped watching the news and if the TV was on it was a comedy, everything around me had to be cheerful and happy.   I had no time to sweat the small stuff.  Perhaps you can facetime, video messages or Skype your children???  Tell then funny jokes when you can and still be you.  Get after them to do homework, clean their room and eat their Brussels sprouts, you know what I mean ;-)

My children surprised me and so will yours.  It's far from ideal but you will know how to help them and in return they will help you.

 

God Bless

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

I guess I was lucky in that my kids were already adults when I was diagnosed. The year I was doing chemo was also our 40th anniversary. The kids got together and planned a dinner for us at home since I was not up tp going out for dinner. Our son had 3 grandkids at the time with the oldest being 9 when I was diagnosed. He & his wife decided to tell the kids I was sick and was spending a lot ot time with the Drs and at the hospital. We tried to make sure that I saw them just before I started another round of chemo, when the blood counts were the highest. It was the high point of the cycle. When I did RICE we kept that routine but since they did not live with us it worked out very well. 

I am not sure how I would have handled my kids were pre-teen at the time. 

christinav80's picture
christinav80
Posts: 3
Joined: Aug 2016

Hi everyone, thank you so much for your help! it's just one of those things, how much do I tell them without it being too much. But I have been taking all of your advice, so thank you for that. Keeping them informed about treatments and what to expect has really helped them open up to me as well. It allowed them to feel comfortable to ask me questions and to be honest with them about fear but also about our Faith.

this Journey is definitely hard on all of us experiencing it, and it's comforting to be surrounded by so much love and kindess!
Thank you!

Kaniksu
Posts: 54
Joined: Nov 2015

Your children will be more resilient than you know. They of course will be so sad with you gone but with the love of their father and friends,and the hope of your cancer being knocked down they will do fine.i am so sorry for you to have to go through this with little ones. Please know your family will be in my prayers...blessings to you..nancy 

Sal0101's picture
Sal0101
Posts: 126
Joined: Sep 2015

Thank goodness for the internet!  FaceTime or Skype daily! They will look forward to it. I had a autologous SCT in September And was told I would be in the hospital for 4-5 weeks. I wore normal clothes and even a bit of makeup everyday!  My way to feel somewhat normal.  You might be tired, but never to tired to smile and laugh with your kids when you call!  I have adult kids but did FaceTime with my brothers and sisters several times! I went home pretty tired just after the 3rd week.  I called it time off for good behavior!

You'll do great!!

Sharon

acs123
Posts: 12
Joined: Mar 2017

Christina, you are such a sensitive and caring mother to your children. You and your husband can really trust your instincts about the best way to help them deal with your situation - no-one is better at it than you are!

You may also find it helpful to find out from the hospital where you are being treated whether they have counselors who are trained to help children in this situation - probably counsellors from one of the other departments in the hospital. If not, perhaps they can recommend a resource elsewhere.  It is sometimes a good idea to also have an 'outside' person to whom the children can talk freely - after making sure that they feel happy and comfortable with the person.

Your openness and honesty with your children has paved the way for such real sharing - you are preparing your children so well. They are blessed to have you and your husband as parents!

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