GBM. Tips for kids?

jbb
jbb Member Posts: 12
edited March 2014 in Brain Cancer #1
Hi! I am 26 yo with a 5 yo daughter. I was recently diagnosed with a GBM grade 4, I have had surgery and radiation. I will begin chemo shortly. I have been very open with my daughter and told her the truth whenever she has had any questions, maybe not always the whole truth....
If there is anyone out there who would like to share tips and ideas on how to best handle our children i would be most grateful and happy to do that. I am a bit lost sometimes...
Thank you.

Comments

  • LannieB
    LannieB Member Posts: 3
    #2
    I am the caregiver for my Mom who has GBM4 and I havc a 9 year old daughter. Mom just came home after radiation and chemo not working. Cait has been told that the prognosis wasn't good; but, not in those terms. We are Christians, and all her grandparents [except my Mom] are deceased. We have explained what we believe. She has no trouble with that since she understands that I am old [49] and grandma is "very old" and she used to tease Mom. What she is having trouble with is articulating [she is a child] is Mom dying in our house. We have just tried to give her special time for just her and listen. It is tough, especially with a child so young as yours. Many hospices and nursing agencies [your local hospital could tell you] have special programs for kids [camp, counselors].

    I wish I could be more help.

    Lisa
  • jbb
    jbb Member Posts: 12
    #3
    LannieB said:

    I am the caregiver for my Mom who has GBM4 and I havc a 9 year old daughter. Mom just came home after radiation and chemo not working. Cait has been told that the prognosis wasn't good; but, not in those terms. We are Christians, and all her grandparents [except my Mom] are deceased. We have explained what we believe. She has no trouble with that since she understands that I am old [49] and grandma is "very old" and she used to tease Mom. What she is having trouble with is articulating [she is a child] is Mom dying in our house. We have just tried to give her special time for just her and listen. It is tough, especially with a child so young as yours. Many hospices and nursing agencies [your local hospital could tell you] have special programs for kids [camp, counselors].

    I wish I could be more help.

    Lisa

    Thank you Lannie. We live at a small place and the hospital can not provide much help, besides we just moved to England from sweden and she has not really got into the lingo yet. I am grateful for having the opportunity to spend a great amount of time with her and she is very brave and cheery around me. She firmly believes we become angels when we die wich is helpful but I still worry about her. Thank you for listening. Keep you and your family in our thoughts and prayers.
  • shelly65
    shelly65 Member Posts: 11
    #4
    jbb said:

    Thank you Lannie. We live at a small place and the hospital can not provide much help, besides we just moved to England from sweden and she has not really got into the lingo yet. I am grateful for having the opportunity to spend a great amount of time with her and she is very brave and cheery around me. She firmly believes we become angels when we die wich is helpful but I still worry about her. Thank you for listening. Keep you and your family in our thoughts and prayers.

    My brother (36) has GBM, he has had 3 surgeries and has been told they will do no more. He has a 6 year old son. I think one thing they have done is gotten some books written specifically for kids about cancer. Maybe you could do a search on the internet for something like that?
    shelly
  • shelly65
    shelly65 Member Posts: 11
    #5
    jbb said:

    Thank you Lannie. We live at a small place and the hospital can not provide much help, besides we just moved to England from sweden and she has not really got into the lingo yet. I am grateful for having the opportunity to spend a great amount of time with her and she is very brave and cheery around me. She firmly believes we become angels when we die wich is helpful but I still worry about her. Thank you for listening. Keep you and your family in our thoughts and prayers.

    Glioblastoma death?
    My brother has GBM and is at the end of any treatments they can do. I was wondering if anyone could give me an idea what to expect in the coming months.
    shelly

Discussion Boards