GIST Support Wiki

 
Telling Your Young Children you have GIST

M asks:

I have been reading entries for some months now and they have been so helpful. I saw Dr. Trent and now have a prescription for Gleevec and I am anxious to get started. I am really nervous about this as I am sure everyone here can relate. We have not told my seven year old for hopes that she may be older and can deal with it better if it comes back. I am low to intermediate risk for return from what he (Trent) says. I hope that is the right thing, as my daughter knows our dog has cancer and she cries and thinks now if you have cancer you are going to die. Any advise is welcome. Any advise is welcome on telling small child. I just dont want to burden her with it.



Marina:

You are dealing with the sociology of disease. Your disease affects other people, and how they react to you will affect your self esteem, your own coping. Be prepared that your ability to cope with your diagnosis maybe stronger and healthier than those around you. Some folks in your life may vanish or become scarce after word gets out. They are running from their own fears, and not you per se.

""Any advice on telling all friends and family of your situation?""

My husband informed other folks. I was simply so embarrassed that I had cancer. I think you just tell them. You can emphasize that GIST is a highly treatable disease these days with targeted cancer therapy. Surgery alone might be curative, but there are no guarantees for that for any GIST patient even if the tumor seems small. If the disease returns, you will have to take a KIT Inhibitor (targeted cancer therapy) as a chronic medication just like a diabetic has to take insulin. These drugs are generally tolerable, and you can lead a normal quality of life.


""Any advice on telling your 10 year old daughter?""

Again my husband was the one. What would you say to another person's ten year old? Dad has a mass/growth and the surgeon is going to do an operation to take it out. The surgery is a very safe procedure, but I will have to be in the hospital for a few days, and then it will take me about a month at home before I feel back to my regular strength. I might have to take a daily pill from now on so that the growth does not come back. This pill is easy to take, and as long as I take it, then things should be great. I will not look or seem any different to you. There really is nothing more to say at this point to adult or child.


In our case, the diagnosis came in 1997, and the condition was declared terminal, estimated 3-5 months to live, hard core chemo recommended immediately. So the children were aware of the worst case scenario at a young age because there was no way to avoid it in the least. Their immaturity protects them. Provided their own lives seem normal, happy, and safe then they can't project much into the future. For kids that are really young, the disease itself does not affect them as much as the parent's reaction towards it. IF the parent is unable to fill the role as parent, then other adults can step in. My kids really became children of extended family and Bristow Oklahoma for three years. People I did not know from Bristow stepped into help. As long as my kids had their own normal routine and activities, then they could put my cancer out of their minds somewhat. About all I can say is that the kids have forgotten the bad times, and act as if nothing ever happened in our household. Keep 'em busy with their own lives--school, sports, lessons, and as long as there is some adult to make them feel safe, then they will go forward.



Marina again:

Probably you don't really have to tell your young children much of anything, though you can give them an age appropriate narrative of a lump that grew off your tummy and the doctor has an excellent medicine to make sure it never grows back. And since yours has an excellent chance that it will not ever grow back, there seems no reason to take it further with the small children.

Gleevec is easy to tolerate, your chances of GIST coming back are not very high, your chances of having near normal activity levels on Gleevec are good. Things are pretty darn good overall.

Children can turn out just fine, even when circumstances are not good. It all depends on the cues they get from the other adults in their lives. And even if there is a bad period they can rebound provided they have good support, and if not from parents, then from other adults who can fill in and give them security and structure in their lives.

In 1997, my children were 2 yrs, 7 yrs, and 10 yrs when my GIST diagnosis came. Advanced metastatic GIST with no treatments in that era. So my children went through through a three year ordeal of having basically no functioning mother. Family, friends, and even people we didn't know all that well stepped up to the plate and thelped to care of them.

The children had been told I was going to die from a disease that could not be stopped, because there was no way to disguise what was going on. Still the concept was too abstract for them. They were kept busy with school, sports, music, church, etc. Other adults allowed them to feel safe and taken care of.

As soon as Gleevec became available and I got better, the chilren instantly were back on track for normalcy. They grew up, were successful students, went to good colleges, have had good lives, and nowhere have I seen that they were scarred from the three years of terminal cancer in our household--because the drug "fixed everything" back to normal for our family. We do not look back in fear at those years. They were what they were, and today is goo, and we go on.

Children stay focused on the here and now, and if the adults in their lives give them cues that things are hopeful or positive and if the kid's routines are normal., busy with things that kids like to do such as soccer, and happy, then they won't worry about it much.

A tumor with a low risk as yours doesn't have to be a burden on them. IT is an abstraction to them, they don't understand, and there is not much reason for them to have to understand it since the prognosis is so good that it won't be more than a bump in a road that is long and wide..


Michael:

You must always treat your children the way that you judge best. Never let anyone else pretend that they know better than you what your own children need. So if you want totally to ignore any or all of the following, just do exactly that, as it is drawn on my own experience of my own children. It can bear no relation to what might be right for yours.

I see it this way. Children deserve to know what is going on. They will sense it anyway and can often tell when the grown ups around them are keeping things back from them. Parents, on the other hand, deserve to be able to share with their children not only the good things about your life but the bad things, too. Learning to deal with the bad news as well as the good is a vital part of growing up, of training for life.

I am sure that you have done everything to be a loving mother to your children. They have the security of your love and affection for them, so they'll be, I am sure, amazingly resilient. I know from my own experience that my elder daughter (aged 27) is far more worried than my 9 year old daughter. That, I think, is partly because she does not live at home and cannot see me every day. OK, my younger daughter does not always seem very "bothered" (mostly because she perceives Dad as being healthy, despite taking a pill every evening) but, precisely because she lives with me, she can at least see, day by day, that I, at least outwardly, am fine. And, apart from anything else, she does seem very resilient, as she just breezes along, sailing through life, without a care in the world. (This is not quite true, as she has her moments of sharing her own frustrations with us, such as not being able to run her social life in anything like a spontaneous manner!). "Sharing her frustrations" can sometimes be quite wearing!

I suppose you could say that my younger daughter is in her own form of denial and is dealing with whatever distress she may have in her own way. Having said that, she just sails through life, as if it were a mere breeze, despite the fact that I make absolutely no attempt to hide anything from her. And no, I do not sit her down and give her honest speeches. I simply answer such questions as she does have as honestly as I can and in terms which she can understand (so "tumour" becomes "a nasty thing inside Daddy" or similar wording).

Bringing up children is one of the most challenging (but infinitely rewarding) tasks that life offers us. We are all different but we all want the best for our children. Ultimately, only you (and their father) can decide what works best for your family.


M.B.:


Our son was just shy of 2 years old when my husband was diagnosed with cancer,though he had his first tumor removed a few years before our son was born (we were told it wasn't cancer in 1993). He was very sick in late 1996 and 1997 before Gleevec was available and our son was a baby. We couldn't hide that daddy was sick and having operations and bald from chemotherapy, but as our son was so young, we mostly talked about it as a boo boo in daddy's tummy and how the medicine he was taking made him feel bad and lose his hair. No more information then that and our son was fine. As our son grew older and GIST was identifed we really didn't focus on it as he was pretty healthy and normal, though he did know dad had GIST and had to take medicine every day. For the most part, our son has been pretty oblivious to the fact that dad has had cancer his entire life. Thanks to Gleevec and the targeted therapies that follow, our son has watched dad race in triathlons, run marathons, play golf, ride bikes, work full time and do things most other dads do. It wasn't until he was very sick this fall from a bleeding pelvic tumor that I really had to explain what was going on and how scary it was. Our son is 15 now so he is able to understand what is happening and I did not hide anything from him while dad was sick. He has always known dad has GIST and GIST is cancer, but he began to ask more specific questions about what that really means, and I answered as best and truthfully as I could. Now that he is well again and has recovered from his surgery, our son seems unaffected by dad's illness once again and is busy adjusting to high school.


M.C.:


My children were also very young when I was diagnosed. My daughter was induced early because of the mass found in my stomach when I was pregnant. She was 7 days old and my older daughter 16 months old at the time of my diagnosis. They are now 8 & 9. From day one, I have always tried to be (age appropriately) honest with them. I believe that if they are old enough to ask a question than they deserve it answered. My kids have never known me to not be taking a pile of pills everyday and going into Dana Farber much more often then their friends Moms go to the doctor. That being said they are fortunate (as am I!!) that day to day life for the most part hasn't been greatly affected. These past few months that I have been on a clinical trial have probably been the worst in their memory and even still I am still able to be up and about brushing hair, helping with homework and making dinner so not that different from the norm. I brought my girls with me to Dana Farber one day a few months back just so they could see the place. We went on a day I was only having blood work and a quick visit with the nurse practioner, so nothing too scary. They got lots of attention and treats from the staff and thought it was great!!! I think seeing where I go took some of the mystery out of it. I believe kids pick up on our anxiety and I think it's important to reassure them that there will always be people to love and take care of them. You will continue to be a great Mom and be able to take care of her for a long long time!!


Luisa:

D's post about telling her children before they come home for Christmas is one I have some experience with, so I thought I would add my thoughts. When my youngest sister was 18 and in her first year of college our father began to die of colon cancer. All of us older siblings knew about his struggles. He chose to wait and tell her until she came home for Christmas vacation. It destroyed her emotionally to be taken by surprise. She was furious with us, our mother and him for not preparing her (she thought his surgery had been curative, which it wasn't, and he died in August). I don't think she has ever seen Christmas in quite the same light since.

Even closer to home: I had three young daughters (9, 14, 15) when I was first diagnosed with cancer (breast this time) in 2001. The multiple surgeries, chemo treatments and radiation could not have been hidden even if I wanted to. Which I didn't, feeling that my children would feel the tension in the house and know something awful was wrong even if they saw nothing (hard to miss surgery or hair loss!). It was a tough time for all of us, but we got through it. And the GIST three years later. And the Thyroid Cancer three years after that. I think my girls still value the fact that they were told the same day as I told my spouse and my mother....I am currently cancer free (but always at the back of my mind is the fact that it might not be permanent) and none of us spend much time talking about what happened.


Thank you for sharing this with me. On the 14th of Dec. my son has his last exam. I will call him then. Since we are Jewish Christmas is not so loaded as a "time of year" for us. I appreciate your sharing. As a parent it is hard to know what to do.