Helping my kids deal with their dad's brain tumor

I don't know what I should be doing for my kids to help them deal with all of this.

My name is Tonya, my husband's name is Jason and we are both 34 years old.  We have a 14 year old son and an 11 year old daughter.  My husband (Jason) was dx w/anaplasic astrocytoma in the left frontal lobe in 2008.  He had surgery, radiation and chemo.  Things were fine for about 2 yrs and in Aug of 2011 he a reccurence.  After proton radiation, additional chemo and avastin things were dormant again.  In Feb 2012 we discovered and entirely new tumor in the occipital lobe, and a couple other small areas as well. 

He has had proton radiation, temodar, CCNU, CPT-11, Avastin, intravenous etoposide and now oral etoposide and nothing has been very effective yet.  Next week he will be starting treatment with the Novocure device.  In the past two weeks he has had a significant loss of function.  The first tumor in the frontal lobe is growing again so his speech is suffering greatly.  The tumor in the occipital lobe is along the splenium/corpus callosum and has a huge impact on his processing abilities and cognitive function in the past two weeks. 

 I was wondering if any of you have kids close to the same age (son-14, daughter-11), and how you help them.  My son seems to be dealing with things, he talks to me and asks questions.  My daughter is the one who is really concerning me.  In the past she always had her friends come over to our house, but recently she is wanting to go to their houses.  She seems like she is trying to avoid being home as much as possible and when I try to talk to her about it she gets very defensive.

Any advice would be greatly appreciated.

Hello,

What have the doctors told you on a go forward basis. I sounds like your son is able to concrete reason, he is at that age. Your daughter may have some difficulty in processing all that is happening. I would suggest you speak with the social worker connected with your husband's case for advice. Not every child is capable to reason clearly, we are all wired differently and you want to make the impact as easy as possible. Children are quite smart though and will see in your actions and words how you are dealing with the situation, so be careful and you will be able to do the right thing. I lost my father to brain cancer, however I was in my 20s, long past the age of reason....

Take care of yourself and best to you and your family.

Hi Tonya,

My husband had Glioblastoma Multiforme, and toward the last 5 months of his life, the tumor spreaded to the splenium.  At the time my husband was diagnosed in 2010, my daughter was 12, and my son was 9.  My daughter, like your son, handled it quite well, and she helped me out a lot with dad.  My son had to see counselor, and I think that helped him.  Every night, I put him to sleep and laid down next to him to talk about things.  I answered his questions to the best of my knowldege.  I told them both the truth about dad's disease and basically prepared them for the worst outcome.  It seemed sad and cruel at the time, but I think it was needed.  When my husband passed over 4 months ago, I had them come and said goodbye the night before even though I didn't know he would be gone the next morning.  They handled everything really well after he passed.  With family and their friends being there for them, they've overcome this huge loss and begun to heal now.  The one thing I wish that my husband could have done then is a journal for the kids later in life.  My husband was so optimistic and never thought that he would die, so he didn't want to start the journal.  Maybe your husband should do a video and start writing for them.

I wish you the best!

Celeste (wife of Robert, 1960-2012)

Celeste,

Thank you so much for your response and advice.  My husband told me a couple months ago that he wanted to start making videos for the kids and I totally agreed with him, it has been something I have wanted to do since we first found out about his tumor in 2008.  Unfortunately I didn't help him start making them and I am afraid now it might be too late due to his difficulties with his speech and thought process.  This is one of my biggest regrets and I will never forgive myself for it I am sure.

I have an appointment set for next tuesday with a psychologist for the kids, so I am hopeful that I will learn more things I can do to help them. 

My daughter is the one who was concerning me the most.  The first couple weeks when his speech really started to fade, my daughter just seemed like she was trying to avoid being here.  She always used to have her friends stay here and all the sudden she was wanting to go to their houses.  We had a good talk and she seems much better now, but do you think it is wrong for me to let her get away for a bit?

I know the adolescent years are so hard even when there isn't any extra life challenges to add to the mess.  Part of me feels like I should let her be around her friends if that is what she wants, but then the other part of me feels like she is trying to run away from it and I don't want that to make it harder on her in the long run.

Do you mind me asking, how was your husbands cognitive function after the tumor spread to the splenium?

If I ask questions that are too uncomfortable or too personal, please don't hesitate to tell me so, ok. 

Thanks again,

Tonya

I have two young children.  11 year old daughter and 8 year old son.  OUr cancer center has a program called "Kids Connection"  It helps kids understand what mom or dad going through.  They explain it on the kids level so they actually learn alot.  Both of my kids were invited back this year to help teach one night.  Having GBM I know my final outcome, but with my kids they know I have cancer and the doctors are doing everything that they can to make me better.  My wife and I are not going to fully inform them because they wont completely understand, and we want them to see dad doing great and being the "fun" dad.  As thing progress we have let them know what is going on, but dont want them to dewell on it.  I have written letters to them and will continue to do that so they will always know how much I love them after I am gone.  the letters are written for high school graduation, 21st birthday, college graduation and wedding. I hope they always know how proud of them I am

Josh, your courage and love is inspiring. It is very important in the long run that survivors know what messages and meanings their loved one wishes to communicate in the future. Children may be belligerent , especially as teens, and can have difficulty with hopelessness. It is important to empathize with the fear and confusion that they have but at the same time to require them to stay connected to the situation.

On Jun 20, 2012 9:24 PM pearsonjosh19 wrote:

I have two young children.  11 year old daughter and 8 year old son.  OUr cancer center has a program called "Kids Connection"  It helps kids understand what mom or dad going through.  They explain it on the kids level so they actually learn alot.  Both of my kids were invited back this year to help teach one night.  Having GBM I know my final outcome, but with my kids they know I have cancer and the doctors are doing everything that they can to make me better.  My wife and I are not going to fully inform them because they wont completely understand, and we want them to see dad doing great and being the "fun" dad.  As thing progress we have let them know what is going on, but dont want them to dewell on it.  I have written letters to them and will continue to do that so they will always know how much I love them after I am gone.  the letters are written for high school graduation, 21st birthday, college graduation and wedding. I hope they always know how proud of them I am

Josh

I hope you don't mind but I referred someone to your post earlier today who is having a difficult time right now.  You are an inspiration to many of us who just have lingering effects of treatment but are considered cured from our type of cancer.  How you are sharing with your children just the right amount of information is not only courageous but the greatest gift you can give them.  My grandmother was a lot like you - she was a realist who faced trials head on.  She was my mentor, one I idolized, and whenever bad times hit me, I always feel her presence even though she passed away many years ago.  While undergoing treatment, I knew she was there in spirit and she gave me the strength to endure whatever it took.  I wish you only the best and pray for everyone here on a daily basis.  Your children have a dynamite father and I'm sure an equally tremendous mother.   

Diana