Children

1. I most likely will not die.

2. You can finish final while I have surgery, it's ok.

3. You can cut my hair before it fall out.

It really does depend on the age of the sons. Two of mine were in elementary school and one was in preschool. My husband told all of them after school was out, in a comforting demeanor at home. Since he didn't show any alarm, they took it well. But of course we never really know how they are feeling deep inside unless they share it with us. My latest blog post is on this very topic at janhasak.com/blog.

I did 2 rounds of In Vitro Fertilization prior to starting chemotherapy. The first round was not very successful which is why we did it twice. In the end we were able to freeze several embryos.

My son is now 13 years old. He was three when I was first diagnosed. While every child is different, I can’t imagine that there is a graver concern that losing one’s mother. And sadly, there simply is no satisfying response. Ultimately, I believe we need to look for the related but unspoken questions our children have, and address those. Among the things that scare him about losing me, for example, is his fear that there will be no one to care for him. So while I can’t tell him I won’t die, I can assure him that we are thinking about these issues as well, and that we put a priority making sure plans are in place, and that he knows what would happen.

Kids make up all kinds of things…like a fear that cancer is contagious. The younger a child is, the more important it is to dig deep and help them ask their questions. For older children, their fear of asking questions is often related to hurting the parent’s feelings…for example if they are embarrassed that mom is bald. Here too, the most important thing we can do for our children is to assure them that there is an open door…and then make sure the door remains open. They take their lead from us, and when we are comfortable talking about things, they will feel safe enough to ask.

Another great question about, really, how we all communicate. And again, turning this around by asking a question can help illuminate.

Ask the child to consider what they do or how they feel when they are thinking a lot about something, or upset about something. Maybe they don't want to talk about it, or they get in a bad mood. Explain how Mommy or Daddy is no different. Tell them you understand it's hard when someone is quiet when they normally are not. Or someone is short-tempered, when normally they are not. It's the same when kids throw temper-tantrums. It's hard for the parent.

I think it's important to join them in this situation, and honor their emotions. Show them they are not alone. That you understand this new behavior is, well, scary. But also crack open the door of their own empathy toward what their parent is feeling.

Perhaps suggest that the child request time to do something together with the parent. "Hey mom, you must not be feeling great right now, but maybe when you’re feeling better we can read a book together. Or play a card game. Or go for a walk. Can we do that at 5 today?" Setting a particular time, instead of making it vague, is helpful for the child to know there is a solution, and for the parent to have time to prepare or suggest another time.

It's also important for an adult to help free the child from feeling he/she is being bad. That he/she is not acting perfect, so he/she is a bad kid and that's why Mom or Dad is being short tempered. I think there's nothing wrong with working with the child to explain that everyone is working within a crisis at home. And that sometimes in a crisis, nobody knows how to deal. By asking, "What do you think would be helpful to mommy?", you can set up an alliance with the child. Help them problem solve. Hear their ideas and worries and provide a pressure release. Then, "Would you like me to talk to Mommy? Would you like for me to be there when you talk to mommy? Would you like to talk to Daddy or have me say something?"

Don't forget that the child's school teachers and counselors are an important support system and set of watchful eyes. Grades sometimes start to slip when a child is in crisis at home.

There are also national summer camps, like Camp Okizu (www.campokizu.com) or Camp Kesem (www.campkesem.com), that are wonderful for normalizing for these kids the feelings and behaviors they have been feeling and seeing at home. Children have been transformed by these camps.

At the end of the day, it is about community. The family community and the people who love and surround them. It's about supporting the kids in this crazy time. Sometimes it takes a third person. So if you see something happening, often you can (and I encourage everyone to FIND THE COURAGE) to help do something about it.

I think this question gets at the heart of the issue that I am so passionate about.

So begin to answer this question with a question.

Let's say the child is named Sally. Why do you think Sally might tell her friends about her mom's cancer? Because she wants support? Hmmm, likely. Because she wants to share something at the root/heart of her life? Hmmm, certainly. And why would it be important to you that she NOT tell her friends? Because you want your private life to remain private? Because we don't talk about illness outside the family?

Yes, indeed, we all live with secrets. I'm here to say that most secrets aren't secret. Especially a secret that has such dramatic outward signs, both from how you look physically and energy levels, but also the amount of time that you are not where you usually are (because you are at the doctor appointments, or on the couch.)

There seems to be a stigma associated with cancer that isn't there with something like, for example, heart disease. Or asthma. What happens when we keep our illnesses private is that right at the time when you need your friends most, you don't allow them to help.

And people want to help. We'd all be a better community if we did help. It feels good to help, and it feels great to be loved and helped.

I tried to use humor and positive things in everything. For my daugther, I told her (because I had a wig) that instead of wearning my hair all the time like her, I got to take them off each night. SHe found that very funny and was fast saying so to enyone who would hear her (she was 3 at the time). I also told her that when my own hair would grow back on my head, it would be a sign I was getting better. She loved touching my scalp and was ecstatic when the first hair started growing back.

Just like AndreaNugent I used an image book with a story about a mom having cancer and getting better. I also tried to get as much help as possible from family and friends to keep my kids routine as stable as possible. They still went to daycare and swimming lessons, we still tried to go out once a week to eat at familiar restaurent, etc.

For me that was an important issue. My kids were 18months and 3 1/2 yrs old when I was diagnosed. My youngest didn't understand much of what was going on, but was really close to his mommy. We tried to prepare him each time we knew I would stay for extended period in the hospital, just so it wouldn't surprise him as much. But as for the cancer itself we didn't discuss it with him.

For my oldest, that was another story. First, she was extremely sensible to the tension that installed itself in our house and the following stress. SHe also asked a lot of question. I soon realized she dealt with things better and more easily when she knew what was coming. So we borrowed a book from the cancer psychiatry unit: a story where a mom was getting sick and then got better. It helped her focus her questions and me direct the information better. I wanted her not to be too afraid of the fact I was lossing my hair (a big thing for her), that it wasn't the dr that were making me sick (because each time I came back from chemo, she always wondered why drs made me sicker instead of better, and used the scars from my the installation of a permanent portacath for chemo to gibve her a "visible wound" to focus on, since cancer was inside of me.

I know that while discussing with other moms, with older kids, being reassured about the possibility of death cvould also be a consideration. It wasn't the case with my own kids. But overall, I say don't hide it or play it down. No matter their age, kids sense things and it is less scary to be told beforehand what is coming than to have the shock to see it and not knowing what is happening exactly.

This is an important and common question about a complicated issue that many of us dread -- people with a chronic or advanced illness, clinicians helping patients, and even just as human beings with empathy and fears. It is not my specific area of expertise as I am not a child psychiatrist or a pediatric palliative care specialist, but I have had enough training in both to offer some suggestions.

Books can be helpful, just to have something concrete to provide practical advice and start to give a sense of mastery to an area that most otherwise feel quite at sea. As such, there are plenty out there, depending on the specific situation -- books for parents to help them be able to talk to their children about their illness, or dying, books for children of different ages to deal with a parent's illness or dying or through grief and loss, literature for children who are suffering a chronic or advanced illness, books for the parents of such children, or for bereaved parents, and even material for siblings of sick children.

Mainly having training in Palliative Care and now working in an oncology setting, most of the resources I recommend are related to patients with cancer. That being said, much of the literature out there, I think, is based on this, and some of the resources I can provide in this area also include information that is more generally applied. The following websites are generally very useful for providing all sort of supportive information for people dealing with cancer: www.cancercare.org and www.cancer.net, the sites for CancerCare, an organization devoted to providing supportive care for cancer patients and their families, and oncologist-approved information from the American Society of Clinical Oncology, respectively. Additionally, the American Cancer Society, an organization geared to patients and the general lay public, has very informative information on this subject on its site at the following link: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/index . Websites for organizations specifically addressing children whose parents have or have had cancer include www.childrenstreehousefdn.org for Children’s Treehouse Foundation and www.kidskonnected.org for Kids Konnected, the latter of which specifically includes on its resource page a list of books organized by the target audiences I mentioned, as well as on-site information for addressing these matters specifically based on e.g. the age of the child or the issue. Lastly, there is an organization focused on siblings of patients with cancer called SuperSibs, and their website, www.supersibs.org, has a host of useful information.

Some helpful things I tell families struggling with the prospect of having to discuss these matters with their children or agonizing about how to broach the subject are as follows: 1) Talk through your sense of what your child knows or understands. Oftentimes there are clues in their talking or behavior to which parents are attuned in suggesting they might have an inkling that something is wrong, that things are changing, even if it is a heightened curiosity about dad's activities, or whereabouts, or mom's body, or about life, in general. Following through with this can lead to interesting and fruitful conversation both in addressing the topic and for your child's growth. The notion that we all have that kids are smarter than we perceive, and, in some ways, more insightful than ourselves, is something that should be heeded and not overlooked. Not only can it cause distance and breed anxiety, but it has the potential to be a missed opportunity for maturation and connection. If recognized, it can be an open door to a natural, comfortable, and comforting conversation. As difficult as dealing with a parent's illness can be for a child and family, the chance to share these fears or concerns is a welcome one from which all parties can emerge with a positive feeling of competence and safety. 2) Trust what you already know about your children. As much useful advice as you can get from the literature, the most helpful tidbit that you will be told is that you know your kids best. Be with them where you already are with them and go to where they are. Use what you know about them and about what they know.

That being said, I would not presume that your asking for help in this situation at all means that you are out of touch with your child. It is, of course, to be expected that even the most attentive parent would feel overwhelmed and inhibited when faced with this issue, so, for some more direction and encouragement, or even to just have something to grasp, the written word has weight to provide a foundation and sense of traction.

If you search Amazon for any of the books you find through the resources I mentioned, you will find even more interesting and novel approaches to addressing these issues, from activity books to coloring books, etc. After all that, I can tell you that the one book to which I have been referred and recommend to my patients on this matter is called How to Help Children Through a Parent's Serious Illness by Kathleen McCue, MA, CCLS and Ron Bonn.

Jamie, I'd like to add to your wonderful insights here. Adults sometimes hide their diagnosis because of their own experience with cancer. If they grew up with a parent going through cancer, treatments and outcomes were very different 20, 30 or 40 years ago. And if it wasn't discussed, the underlying message absorbed was, "cancer isn't something we talk about." As irrational as it sounds, it might seem easier not to talk about it. Sharing with others, especially children can be overwhelming especially when you're struggling to wrap your own mind around it. Yet, if it's not talked about children will often imagine what's wrong...as you noted they sense the unspoken. The trouble with "imagining" what's wrong is that it can lead to false conclusions, doubt and even shameful feelings. Children may think that they're somehow responsible for what's wrong in the family. It's also not uncommon for children to have drastic thoughts such as "is my mom going to die." It's a common fear that passes through adults minds, and children are no different. Cancer won't get worse by talking about it! Children (at all ages) respond well to visuals, hence picture books are very helpful. Books also afford a platform to journey through difficult emotions together. Children are the focus of all the tough topics I write about. They are alongside the adult making the journey, so it's imperative that they be included as helpers and encouragers. Equipping them with understanding on their level (as you noted) is a life-long gift for patient and child. Thanks Jamie. ---
Maryann

Our boys were 3 and 4 at the time. We chose not to say anything until we knew more about the plan for treatment. However, children are very intuitive. Before we told them, by four year old began asking questions. "Mommy, is one of your friends sick?" No dear.
"Is one of your friends dying?" No dear. I could tell he was affected by all the hushed conversations. When we did tell them, we explained that mommy had some stuff inside her that was making her sick and the doctor needs to take it out. The 4yr old had had some minor surgery the year prior. He asked me if I would be going to the same hosp, i said yes, He asked me if the doctor would use the same tools. I said yes. He then looked at me and said, "Oh, then you will be fine." and scampered off. When I came home, he helped with the drains, and it made him feel so important. The younger one really did not comprehend any of this, and neither remembers anything. I never said the word cancer. At the time, my mother was losing her battle, and died seven months later, and my older son's best friend's mother was losing her battle. We feared that if the boys knew I had cancer, they would think I would soon die. I would not change the way I handled it, except maybe to tell them at least something right away. I am sure the wheels were going in their heads and likely this caused some stress.

Mostly in a positive way. They have learned more more about being a leader in community service, not just volunteering and how important it is. They have learned about natural eating, organics, the dangers of processed food and why they should choose more healty foods, which is certainly better for them in the long run. Then are more aware of foods that they should avoid that are not healthy, more than they probably even want to know! I think they probably complain less about things or events that might have bothered them alot more before being exposed to my illness. On the other hand, my cancer scared them and I think it affected my older daughter a little more. She worries when she gets sick and is sometimes nervous that she too might get cancer.

Three helpful resources to help children who've lost a mother to breast cancer or any other cancer:

You can find the CLIMB Program at numerous cancer centers around the nation. It is facilitated by Licensed Clinical Social Workers at the cancer centers to help children cope.
For locations visit: http://www.childrenstreehousefdn.org/support.html

Bereavement camps for kids around the nation: http://www.comfortzonecamp.org/

Lastly, there is ongoing support through this online forum: http://www.hellogrief.org/families-with-a-missing-piece/

Just as our kids are all different, so too are the ways in which we need to approach them. Ten years ago resources were hard to find, and I can clearly recall sitting on the floor at Barnes & Noble crying because I had no clue what to say to my 3 1/2 year old son. However...I came up with something that he could really understand and opened the door to all our future communication.

There are two things that I advise clients.

First, help your children, no matter what age, find reliable resources. It is all but impossible for a child to has his or her parent if she is going to die...and yet with cancer, that is what most children worry about above all else. Frankly, some of us don't want to confront that question ourselves. But giving kids other places to turn - a school counselor (who you've pre-informed!), your doctor or nurses, a family member or friend who offers to help, another child who has gone through this, AND the access to age-appropriate, reliable web sources, can help empower them to find answers to the questions that are keeping them up at night.

Second, answer every question directly, and carefully! I know others differ in their opinions, but I personally believe that kids deserve answers. This is happening to them too! And when you go from one voice mail a day to 30, they know something is up (btw, either send your calls to a cell phone or set your answering machine so that incoming messages cannot be heard as they are being left, especially if you have young kids!). At the same time, I personally, was cautious to be careful with my answers. My son DID ask if I was going to die...and I didn't know. As important as it was to reassure him, I also could not make a promise I couldn't keep -- and leave he and dad with that baggage. My mom actually came through with the answer to that question: "We have a whole team of people working very hard to make sure that doesn't happen." (Thanks, Mom!)

Thanks so much for your beautiful answer. My children were 15 and 12 when I was diagnosed. My son, the 12-, now 14-year old, doesn't dwell on it, but is supportive when we talk about it. My daughter, the 15-, now 17-year old, is supportive, and, like your son, I can see that her compassion and desire to do good in the world has been positively affected by our cancer experience. Unfortunately, however, she has also been deeply affected by the reality of my mortality. Usually, I can't get her to talk about it, because it hurts her still so much. I talk a lot about cancer's gifts in my blog wherewegonow.com, but having mortality smack you in the face at such a young age is one of its biggest losses.

Talking to Young Kids
About Your Cancer Diagnosis

I know. This isn’t a conversation anyone wants to have. But part of being a grown-up means that we have to do the hard things, especially when it comes to our children’s well-being. And because a cancer diagnosis effects everyone in the family, it’s important to reach out and communicate to your children. Hoping that they won’t notice really isn’t an option. Here are a few things to keep in mind.

• Cancer is not contagious. In an age when we constantly tell our children to wash their hands so as to not catch germs, we need to make sure they understand that cancer cannot be “given” to someone else. Thankfully. They can give kisses and hold hands and hug just like always. In fact, there’s no better time to be loving.

• Cancer didn’t happen because of something the child did.
Feeling guilty is a very real emotion that children can carry around after a diagnosis. Sometimes for years and years. Yelling at a sibling or not eating the peas on the plate cannot give someone cancer. Tell them straight out that nothing that they did, or said, caused you to get cancer. And then tell them again. And again.

• Cancer is mysterious, even to adults. For young children, the technical details of cell mutation and environmental toxins with fall into the realm of garble-de-gook. If they want to know why someone gets cancer, tell them that it’s hard to know exactly why it happens.

• Cancer is an illness, not a state of being. Even though cancer medicine makes you feel sick, nothing can change how you feel about your children. Let them know they are still loved as much as always.

• Children know what’s going on, even if you don’t tell them.
Oh, they have ears with dog-like hearing, and can pick up on conversations that you’re sure they can’t hear. And they have friends, who will tell them things and ask crazy questions. Even if they’re little. Children who hear the truth from their parents upfront will have less anxiety, and that is one less thing you have to worry about.

• Slow and steady wins the race. You don’t need to tell your kids everything all at once, especially if they are little. The sit-down serious discussion can ratchet up your emotions, which might not be helpful. Give them information in small doses. The more normalized you can make it seem, the more they will accept it and move on. Really.

• Cancer treatment is time consuming. Children who are used to unfettered mommy 24x7 access will have to deal with changes in daily life. That is hard for everyone. But it can show your children that asking for and receiving help is one of the best lessons to learn in life. Reassure them that this treatment phase shall pass.


Sue Glader is a writer, mother and breast cancer survivor living in Mill Valley, California. She is the author of Nowhere Hair, a children’s book that gently and also playfully explains life during chemo and addresses the biggest concerns of young children. www.NowhereHair.com.

Balance exercise which releases endorphins with minimal white foods.....