menreeq wrote:I suspect this is a topic/thread that others have discussed before; please send me a link if you know of one.
My daughters are 6 and 2 years old. My older daughter was 5 when I got the diagnosis. I'm about to start cycle 4 of neoadjuvant chemotherapy (Xeloda monotherapy). We had informal consults with a child life specialist, our pediatrician friends, and a social worker at my oncologist's office. All asking the same question. What should we tell the kids?
My toddler is too young to understand, but she was old enough to know mommy was hurt and couldn't pick her up for 6 weeks. She would look at and touch my port scars. My kindergartener is very attuned to my feelings. She was pretty upset about the prep process for colonoscopy and surgery. I didn't tell her about chemotherapy -- just that I have medicines for the sickness that required surgery. Funny, we were explaining to her how I had to go to the hospital to get a sickness cut out of me. She said "you're gonna have a surgery?" Thank you, Doc McStuffins.
So what did you tell your kids? What would you advise? Any regrets?
Some day I have to tell them they need to start getting colonoscopies at age 30.
I read your message and remember going through *exactly* the same thing and the same questions. My little man was 4 when I was diagnosed (turned 5 a month later) and is now 6. I think the hardest thing I dealt with after hearing that awful diagnosis was the thought of what impact this would have on him, and how to deal with that. As you said, there have been other discussions I've seen on this topic, some of them really difficult to read. I remember seeing one message thread titled, "When do you tell your kids you're going to die?" that just about crushed me. But the hard reality is that we have to think about this kind of thing, and like so many other facets of this journey, learning gives you some of your power back.
I read a lot of opposing views on "tell them" vs. "don't tell them," but I think what ultimately stood out for me was a post from a child of someone who died from cancer and had not told them. In essence, not being prepared made it much more difficult for them. I saw this thought echoed by others, and it's the one that really stuck for me. Like us, having information and understanding makes it easier to process, if not to bear. Personally, I ended up telling my little man that Mommy had some "bad cells" and that the surgery was to take most of them out, and the medicine that followed was to make sure no other bad cells were left. As a boy, he liked the idea of searching out hiding bad cells and blasting them. LOL This mix of telling them but not necessarily giving them too much technical detail seems to be the prevailing response for what to say to younger children. You can probably find this thread by searching for the above title and read some of the varying opinions for yourself. We each have to come to our own decisions in this, and they have to be ones we can live with.
Like you, I also did monotherapy (Xeloda - oral version of 5-FU). Overall I'd say it went as well as I could have hoped for. I'm in my follow-up phase now, and find myself trying to pack as much living into every day as possible, but whatever the future holds I think facing it with knowledge and information is the right thing for me.
Before I wrap, I'll share something with you that a special friend by the handle of BeansMama shared with me shortly after I first joined this group, when I was struggling with how this would affect my child. She said to me that she had kids also, and understood how hard it was, but that her kids actually liked getting to take care of Mom, and that she was using this as an opportunity to show them what taking care of family was all about. Those words really impacted me and turned my perspective completely around. I had been very sad that I might not have the time to teach my son about the things that were most important to me - my faith and trust in God. When BeansMama said that to me, I realized that instead of worrying that I would never get to teach him, that this was an opportunity to SHOW him. I could be a living, walking, breathing example of trusting God and living by faith.
Whatever your personal views, faith or struggles, I hope that the words BeansMama shared with me so long ago have meaning for you. It's awful hard to find positives on this journey, but being able to view it this way was a blessing to me. It made all the difference in the world. I hope that you're able to find some meaning and some hope in those words, and that I can pass on the special gift she gave to me. I hope this info helps, and will pray your journey is as smooth and positive as it can be, and that you reach NED very soon so that you can move on with life with your special girls.
Smiles, Hugs and Prayers,