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grief in child cancer survivors

janedough
Posts: 1
Joined: Dec 2007

I am the mother of a four-and-a-half year old with neurofibromatosis type 1. She has survived an aneurysm, a stroke, brain surgery, an optic nerve glioma and 15 months of chemotherapy, from age 18mths to almost three. Her tumor was considered to be benign, but was inside the skull and growing and threatening her eyesight. Her prognosis is very good. My mother was having chemo for metastasized breast cancer at the same time and the two of them were "chemo buddies" a ghastly attempt to find some humor in the situation. Mom just died in October, and my little one is having a really tough time dealing with it. She is exhibiting a lot of anger, nightmares, clinging to me, terrified if I get even a cold. She seems to think that we are keeping grandma from her some of the time, and that if she is cruel to my aunt, whom mom appointed a substitute grandma, that grandma might come back. I'm afraid that she will figure out that she had the same treatment and become afraid for herself, although Hospice assures me she won't. She doesn't seem to fit the profile of the average toddler. Her experienced haved matured her in an oddly uneven fashion. Has anyone out there dealt with a similar situation?

AmazingHands
Posts: 4
Joined: Oct 2008

I am very sorry for your hardship. I'm glad that your daughter was able to survive all those complications. There is actually another story of this girl that fell one day, then ended up developing a brain tumor. The story is really inspiring and I'm sure it would help bring hope to your situation. You can watch the video here:
http://youtube.com/watch?v=3ZGCrzTUp40

This girl also seems to have developed a bigger sense of maturity as well

srisko's picture
srisko
Posts: 34
Joined: Apr 2008

Dear Janedough,
First let me say I'm sorry about your daughter I hope she is doing better. I'm an 18 year childhood survivor of leukemia. I was diganosed at five and I'm 24 now but when I was 12 I had been of treatment for only three years, I wasn't acting like a 12 year old girl. I thought the kids in my class were so stupid in the way the behaved, and my mom took me to get cognitive tests done and the tests showed I was 13 years more mature than my peers. I was really a 25 year old woman stuck in a 12 year old's body. Today I'm considered 37 even though I'm 24. So yes sometimes Survivors of childhood cancer are considered "old souls" because of what we've been through; we see the world much diffrently. I made it through and I'm sure your daughter will too.
Sarah

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

First I want to send hugs and prayers and tedddy bears to you and your daughter. She sounds like a toughie and I belive she will make it thru well.
To tell you about myself and my "odd maturity." When I had just turned 11, I had surgery to remove a medula blastoma brain tumor located in the top right ventricle at the top of my spine, followed by high intensity radiation treatment direct to the back of my head, and high intensity chemotherapy. I am now 36, but a part of me; emotionally and psycologically, is still that scared 12 or 13 year old. There have always been a few ways that I have been more mature than others my age as well as this "younger" factor, so it can make life rather interesting.
I don't know if what I've said here will help you or anyone else, but hopefully in some way it will.

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