Helping a 3-year-old with a parent's serious illness

K writes:

"My husband has just been diagnosed with a very advanced stage colorectal cancer, and we are in that horrid little wait between diagnosis and CT scan results and the beginning of chemo/radiation.

Our daughter is 3 years old in 2 weeks. I am trying to educate myself about the cancer and the treatments, how to help my husband and support his healing, but my question to you all is: How can we help our daughter? She already knows that daddy is in pain and that sometimes he needs to cry and that often he goes to the doctor, but she is finding it hard to understand that daddy cannot play wildly like before and that sometimes mommy and daddy are having serious conversations and sometimes we are sad.

So she is angry and difficult and she needs everything to be just so. We have 5 weeks of intense treatment coming up and this will just be the first little step in a long and difficult process. What can we do to help her? How can we help her later in the process? I am looking for any experiences and ideas of how to help a child deal with serious illness, death, grief... I will be happy for tips on reading and well, anything really.

one additional aspect of my question i just realized is that our daughter is turning away from her dad, not wanting to cuddle, often turning her back to him during dinner etc. you can imagine how sad that makes her dad and it really makes it clear that we need to help her understand all this or at least deal... "

Oh, K, I am so very very sorry for all of you that you are going through this.

I wish I knew what to say and do. I think this post-3-year-old stage can be hard enough for parents and kids to negotiate together, so adding all this on top is going to make things even more difficult for you.

I wonder if it would help to enlist family and friends to help entertain your daughter. Maybe ask if they could take her on outings with their children, playdates, and things like that. It will give her other things to think about and do, and will give you and your husband some time to be able to break down if you need to without having her there.

Readers, do you have any suggestions for K? This is way out of my scope of knowledge.

Comments

[Kate]

K,
WhyMommy at Toddler Planet (http://toddlerplanet.wordpress.com/) was recently diagnosed with inflammatory breast cancer, and is currently undergoing chemo treatments. She has a toddler and a baby. She should be able to give you some help/advice.

I'm sorry about your husband, and I will be keeping you all in my thoughts.

[Strugibear]

K, I am so sorry that you are going through this.

First, let people help. People you never would have expected to step up will offer to help you-take it.

My stepmother was diagnosed with leukemia (AML) when my sister was 4 (turning 5). It is a different age/stage than turning 3. I was in graduate school at the time and able to take a leave of absence. During the time they got to be the parents, but I was there to add stability. Despite doctor visits and hospital stays little sister got to keep her routines, which helped her. I was around to provide some of the rougher play and outings when necessary. It also meant that when my stepmother was in the hospital or at doctor visits my father could be with her and focused on the treatment options and her emotional needs. (That said, he pushed aside his physical and emotional needs for quite some time. I know that it is difficult, but please take care of yourself. Or, put a friend in charge of taking care of you!)

Hang in there-we are thinking of you.

[andrea]

I'm so sorry. This is way out of my scope too. I just wanted to suggest, if I may, that you visit Snickollet's blog. Her twins are younger than your daughter, K, but her husband had pancreatic cancer and died earlier this year.
http://snickollet.blogspot.com/
Hopefully you can find some help/empathy/understanding there.

[Chris]

K, so sorry you and your family are going through this. I second Snickollet's blog, yes her kids are younger than yours is, but maybe she can help YOU get through things.

I also wanted to add that my daughter also started turning away from Daddy when she was about three. She still wants him to snuggle etc. if I am not available, but I am her first choice (was not always that way)

My prayers are with your family!

[Shandra]

I am so sorry that you and your family are going through this.

Can I suggest that you get in touch with the oncology department or clinic where your husband will be? They should have resources to help you, and if they don't, try the local children's hospital. They really are the experts in this and should be able to hook you up with a wide variety of stuff. My MIL was a cancer-care nurse and her clinic really did extend their mandate of care to the whole family, and I imagine most do.

Also, Bear Essentials is geared a little older - 4-12, but it might give you some ideas: http://www.bear-essentials.org/index.html

But I really recommend trying to hook up with human, in person resources if you can. When we lost my daughter the niece and nephews we are closest too, who had been very involved in helping decorate the nursery, etc., were very upset, and our hospital's social work department was a huge help (it was a children's hospital).

[Shandra]

I came back because I wanted to try to give some practical help too although really I don't have experience to bear.

But I wonder if there are routines that she and her dad can build that are a) short and b) not very physical. Like maybe a (short) song together. Don't know how you feel about TV but this might be where I would institute a special show (dvd) to watch together "just for them" that he can zone out in front of?

We went through this in a very minor way when my husband tore his ACL and although my son now has a Bob the Builder DVD that I am not overly fond of, he loves their "Bob" time and it did take the place of their daily round of kick-the-ball pretty swiftly.

I also was thinking that like a pp said, routines may be key to keeping things regular for her, and enlisting help sounds like a good way to do that. Also if you can afford it or enlist friends it might help the whole family to get cleaning help so that's one thing off everyone's agenda.

Anyways hugs to you.

[lisa]

Let me add my good wishes & thoughts to the pile. Do you live an area where there's a Gilda's Club? If you're not familiar, it's a place of support for cancer patients, survivors and their families, founded in memory of Gilda Radner. They offer support groups, classes, and a whole program for children. Even if you don't physically live near one, check out gildasclub.org & maybe someone can help you remotely.

All the best to you. This limbo period is so frightening.

[Cathy]

I wanted to add that maybe the turning away from Dad thing might just be part of the age. My 4 1/2 year old was anti-dad for quite a while in her 3's - he is in charge of bath and there was quite a stint when he was not "allowed" to do it. Not sure what changed (other than her getting older and me encouraging a little courtesy on her part) but they're back in the swing of things again.

[Ali]

K, I am sorry that you are having to go through this. There are some great suggestions above. I also thought I would pass along a link to an article that was recently in Newsweek - http://www.newsweek.com/id/43353 - titled "What's Chemo, Mommy?" I hope it helps.

Last summer I was receiving treatment for a serious illness; my daughter was three at the time. It was really hard for everyone; I was seriously incapacitated for almost six months, and my daughter was upset and angry that I couldn't parent in the same way I had. The biggest help for us were friends and family. There's a great site - http://www.lotsahelpinghands.com/ - which can be incredibly useful for anyone offering to help you guys out in any way.

You might also check with your local JCFS - some of them have programs for those in your situation, or can help you find appropriate help. Services are open to all.

My thoughts are with your family.

[dregina]

K -

I am so sorry. I'll hold you and your family in my prayers.

I work at the American Cancer Society and my father passed away from Multiple Myeloma a few years ago, so anything I can offer you from my own experience, I would be glad to.

ACS has a series of articles titled Children with Cancer In the Family - there's an article on Dealing with Diagnosis, one on Dealing with Treatment, one on Dealing with Recurrence, one on understanding Psychosocial Support Services, and one on Dealing with a Terminal Diagnosis. All are available online at cancer.org, and can also be sent through the mail. They break their advice down into age group categories - it may be helpful to let your parents, your husband's parent's, and/or any other caregivers of your child know about them, if they're looking for information on how to support you and how this may impact your daughter. ACS can also help with answering medical questions, and we're open 24/7, so if you guys are up late talking and realize you need a question answered, don't hesitate to call.

There is nothing normal or easy about an advanced cancer diagnosis, and yet life keeps going on all around you. It's just so hard. Again, anything I can do to help, please don't hesitate to email me. dregina@gmail.com

God bless.

[pnuts mama]

oh, K, i am so very sorry that you are experiencing this. my mom was diagnosed with stage 5(!) colorectal cancer back in 1995- she beat the hell out of it for 6(!) years. i know that there have been tremendous advances since then, so many ways that we can beat back a disease that is so scary and take back our power from. my prayers are with you all that you find peace and hope during the loneliness and strength and resolve for your journey.

i read a blog called: http://luchalee.wordpress.com/ written by danny, a husband whose wife has beat her own cancer back into remission, and they have a three year old daughter. i know he answers his comments and email, and i wonder if he would be a good resource for you.

i also second the rec's for extended social work with your daughter- perhaps her pediatrician has some resources for her? like art therapists, or play therapists that specialize in working with kids who are experiencing sickness with a parent?

i can't imagine how much more this rejection can be for your husband- even if it is a normal part of three for some kids, perhaps exacerbated by a sense of needing to protect herself in a time of crisis. i also think it's a great idea to have your husband have specific special activities with your daughter that can be their own- ice cream or a cupcake together that a friend delivers with a tag addressed just for them? a new handmade fleece blankie they make together (tie the edges around it) that only they snuggle together with and read a story? a special movie or tv show they watch and cuddle to while they drink a smoothie that is just for them?

my heart is with you, and we'll be thinking and praying for you and your family as you battle this- please let us know how you are doing. take very good care of each other and be gentle on yourselves.

[Colleen]

I wish I had answers or advice on how to help your daughter but I don't. However, I was diagnosed nearly ten years ago with colorectal cancer and want to lend an ear (an email ear?) if you or your husband would like to talk to someone who's been through something similar. My thoughts and prayers are with you. I know how difficult a diagnosis like this can be. If you want to reach me, please visit my blog and go to the about page to access my email address.

[Christi]

I don't have any advice. Just wanted to let you know that my thoughts and prayers are with all of you.

[caramama]

K, I'm so sorry that you and your family are going through this, because cancer does affect the whole family.

I don't have much new to add, but I second Toddler Planet as a great blog that might help, and the others sound good too.

I was also going to suggest that your husband might be able to have a new roll doing quiet activities that can be a special time for them, like maybe coloring or reading a story. I also like the idea of a special TV show/DVD, especially if she doesn't usually watch TV, it could be a special treat.

Good luck! We'll be thinking of you!

[Elise]

Dorcasina, who writes the blog et al (http://etaliae.blogspot.com/), has a daughter who I believe was about your daughter's age when her husband died of cancer. Checking her blog archives or emailing her would be a great resource for you. She's really smart and kind.

I'm so, so, sorry that you're having to go through this. No one should have to do it, especially with a kid that young.

[jill]

I have a friend with Stage 4 rectal cancer, also spread to her lungs. She has a 9 month old and a 2 1/2 year old. I could try to put you in touch with her if you're interested... Maybe Moxie can email me your contact information and I can pass it along to my friend?

She's doing REALLY well with chemo btw... the tumors are almost all gone. She's in radiation right now.

I know she has had her parents take her kids for 3 days after each chemo treatment b/c those are the worst days. She also has a HUGE network of friends who are helping. We bring meals 3x a week, and someone comes and cleans for her every other Saturday. So she can focus more on herself and her family than cooking and cleaning. I know she really had to suck it up and accept help, b/c she's the kind who will usually be offering to help and not needing anything in return. But she had to really step back and accept all the help she could get - which meant giving the kids to her parents for a few days every other week. That was tough on her, but better for her kids.

I don't know specifically how she's talked to them about what's going on... but like I said, I bet she'd be willing to talk to you and share experiences...

[m]

K, this is out of my scope, too. Your last paragraph, about your daughter turning away from your husband and how much it hurts him brought tears to my eyes. I can only imagine the pain you are all going through. I wish you the best and am confident the intelligent readers of Moxie will be able to give you something tangible and helpful. For me, all I can offer is positive thoughts and prayers.

[AmyinMotown]

That's about all I have too--prayers and empathy for you. I second the suggestion to talk to the oncology department -- when my MIL was getting treatment at a big university hospital I was so impressed by the kindness and professionalism of the nurses and how eager they were to help people take care of themseves and find resources.
My daughter is turning 3 on Sunday (!!) and was very affected when my MIL was diagnosed. We're not close to her at all, but my husband was devastated and it did affect my girl. I would just try to explain to her that Daddy was crying because he was sad abut Grandma being sick, and he would be okay and it wasn't her fault but we needed to give him a hug and then let's go play elsewhere. I also liked everyone's recommendations about having a special quiet activity just for them, something she cannot resist even if she's a little scared to see Daddy sick.

If she is in school, also, make sure her teachers know and they can give her a little extra love, and if there's any kind of parent group, formal or informal, let them know too. I know the moms at my daughter's schoo would totaly rally around a family going through this. If you are religious, clergy or lay leaders can be a big help at this time also.

[Andrea]

K, hon, I'm so sorry and wish I had magical words of wisdom. The best I can do is keep you in my prayers that you find the inspiration and fortitude to get through this.

[Betty M]

I'm very sorry. My sister lost her husband 18 months ago. He had a brain tumour. Their boys were 3 and 9 when he died. The 18 months from diagnosis to the end were very hard for all of them. My sister had help from a UK charity called Winston's Wish - http://www.winstonswish.org.uk/default.asp . They publish lots of info and guidance for parents and teachers and families. Hopefully you can find something there which is useful.

[Emily]

K, I don't have any more advice to offer in addition to the previous commenters, but wanted to add my voice to the community of people hoping and praying for you and your family.

[Michelle]

K - my heart goes out ot you and your family. I lost my dad to lung cancer when I was 13, so I know firsthand the toll a serious illness can take on a family. I hope you are taking some time to cope yourself in addition to seeking help for your daughter.

One of the things that came to mind as I read your question was play therapy. One of my friends is a play therapist - they are trained to work with kids going through emotional or physical stress (everything from divorce to autism) and it might give your daughter the opportunity to express some of her feelings in a safe environment with an adult other than you or your husband.

There is a national organization for play therapy, but their website isn't working (so irritating!) but I did find this one: http://www.theraplay.org/ that seems legit.

Hopefully all of you are getting the support you need from friends and family...in general I would just encourage your daughter to talk about how she feels and remind her how much she is loved and how nothing that is happening right now is her fault.

Please keep us (Moxie) posted and my prayers will join everyone else's.

[Susannah]

Oh, K. I am so sorry.

Here is a national list of grieving centers focused on children around the country. I am not sure where you live but maybe there is a center near you:

http://www.thealcove.org/othergriefcenters.

My first thought about your daughter turning away from your husband is that maybe there is something healthy about her communicating her feelings to him, whether it is normal age-appropriate stuff, or a reaction to your difficult situation. I wonder if you could view this as an extension/regression of a younger child's separation anxiety, which can sometimes be expressed as rejection. In that case, your husband's "job" is to somehow tolerate it and show her that she can't push him away and that he keeps coming back. Maybe there are peekaboo-style games he can play with her that are suited to kids her age- like leaving her little surprises in funny places, or calling her unexpectedly on the phone, putting up pictures of him that she can find, etc.

If your husband could envision how his reaction to your daughter's rejection might be healing in and of itself, maybe it would help him?

[z]

K, Just adding my prayers and well wishes. I am so sorry that you and your daughter have to go through this.

[anonthistime]

K, your family is in my thoughts. Sending courage and strength your way.

When I was 13 and my sister 10, our mom was diagnosed with ovarian cancer. She's still alive, 20+ years later. At the time, her illness was not openly discussed (on a counselor's advice - how times have changed). But watching my mom go through that, and not knowing or understanding why she suffered, was really scary.

Probably the worst part was seeing physical changes, like losing her hair and eyebrows, or hearing her get sick on chemo days. We didn't want to get too close to this "different mommy" in case we could catch what she had.

The other commenters have made wonderful suggestions about finding support online and in your community, and I hope you find solace through their advice. I have only a couple of suggestions and hope they might be helpful:

If your husband is likely to lose his hair, maybe your daughter could watch him cut his hair ahead of time, so that she doesn't associate the change in his appearance with sickness.

On chemo days, try to find someone to share bedside duty. Your daughter will probably want to cuddle mom, in addition to being at a helper's house. Going for a walk or a trip to the playground will also give you an important break, and it will probably be a relief to be around happy kids and fresh air. Take photos to share with your husband when he is feeling strong.

Be gentle, and take some time for yourself too. It's OK to cry around your kid, and it feels good to have them hug you and comfort you. Take time to leave your husband and daughter alone -- they will come up with something to do.

Again, sweet healing wishes.

[whymommy]

Hi, K. I'm Susan, from Toddler Planet. My little boy, the second love of my life, was 2 1/2 when I was diagnosed with inflammatory breast cancer, an extremely rapidly progressing form of breast cancer that includes rapid swelling, painful to the touch, and quick progression. He picked up on it immediately. When I rested, he rested. When I didn't feel good, he didn't feel good. When my hair started to fall out, he pulled his own hair out. It was heartbreaking.

But 6 months of treatment (chemo) later, we are nearing the end of the bad times and he is also able to celebrate with us. He pulled off my cap the other day and noticed with delight that "mom's hair grow up!" Then he told daddy, "Mom's hair grow up, that means she's getting better," something I had told him would happen weeks and months earlier and he retained all that time. He is happier now, and although we still have rough parts to go (surgery and radiation for me), I know that he's in a good spot and so am I.

Try to establish some daddy-daughter routines if you can. For instance, I go to the hospital on Thursdays for chemo. When I come home, I fall into bed. We made that time a special time, and my 3 year old and I watch kid movies and read books in Mama's bed every Thursday afternoon and Friday while I don't feel well. He runs down to play with Dad, Grampa, or friends a lot, but he gravitates back to my side, and it's incredibly comforting to both of us.

Maybe your husband would like to take over the bedtime routine of reading books, etc? I found that easier to do than changing the kids or taking them outside to play, for instance, especially on my hard days.

There will be hard days. But we tried to work through them as a family and involve everyone in most parts (not the tough discussions; those we saved for after bedtime), and I hope you can too.

By all means, come by my blog and say hi, talk, ask, or just listen. Cancer is hard. Cancer with little ones at home is no less hard.

My heart goes out to you....

[whymommy]

Oh, and sorry to talk so much like this, but I do have one other concrete suggestion: ask a friend to take some family photos of you guys having fun together now, before the chemo begins, and frame a few to put in her room or the playroom where she will see them. It will remind her that Daddy hasn't always looked sick and that you guys are a team. Because you are a team, and you will come through this together.

Do come by my place and look around or say hi, K. It's important to gather together with friends during such an unexpected time like this.

[liz]

I would also suggest extending the bedime routine if you can, so that she can have daddy time and still have mommy time so that she's not rejecting daddy to get the mommy snuggle.

She's old enough at this age to be interested in puzzles, building blocks, board games, and cards --- good things to do quietly either on the floor or on daddy's bed. Paper dolls they can cut out together and play with are good.

Also, she could help mommy make smoothies and soup for daddy --- getting her involved in helping in non-magical-thinking ways will give her a sense of some control over all this and might keep her from looking for a magical-thinking way to change what's happening.

[k]

Wow, thank you so much everybody. I am overwhelmed. I will slowly read and reread all you suggestions and visit the blogs you suggest, it is all very helpful. I will try to keep moxie updated. Thank you so much again. If you think of anything else, feel free to keep adding to the comments here - I will come back a lot over the next weeks. k

[laury]

I have no experience here, and you have probably thought of this, k. But maybe there are ways you can encourage your daughter to feel she's helping her father, or making him feel better? If there is any kind of physical contact that feels ok she could practice that gently, or helping make food for him - anything that gives her a chance to express her love.

[Heather]

I wasn't sure whether to comment on this post out of fear I might make you feel worse, but I decided I should since you are asking about how to help your daughter. I was in your daughter's shoes 25 years ago when my father was diagnosed with advanced colon cancer. I was 4 years old and he passed away when I was almost 7. It was 1985 when he died, so I am sure there have been many medical advances since then. I don't want to go into too much detail because I am sure every child experiences things differently, but I will tell you the one thing that I think may help you. I tended to block out all of the bad things and only remember what I wanted to remember and only hear what I wanted to hear. This is sometimes a good thing. However, in my memory of events, my parents never told me just how sick my dad was or that he might die. I thought he was coming home from the hospital the day he died and was in complete shock when he didn't walk through the door cured. I found out much later that my mom had been completely up front with me about everything every step of the way. I just didn't remember it. That was how I handled the pain, I guess. As a result I was angry at my mom for years and never felt a sense of closure because I didn't remember it. My mom never had me see a therapist (probably because she didn't know how I felt or what I was thinking until years later), but I think in my case, it would have helped me tremendously to deal with what I was feeling. My thoughts and prayers go out to you and your family.

[hedra]

I agree with the family counseling. Art therapy at 3 can be useful. Or you can wait, but don't forget to do it, later, regardless of the outcome (hopefully good).

[doctor]

sorry i don't have time to read the other posts so this may be a duplicate.

1. so sorry for everything you and your family are going through.

2. consider calling the social services department at a local hospital and see what they offer for kids dealing with illness in themselves or in a loved one. if there is no children's hospital nearby call one in a major city and ask if they have web resources you might benefit from.

3. make a book from an empty journal or empty photoalbum to read to your daughter (your husband might want to read it too). put in drawings of whats going on, name emotions she and her parents might be feeling, draw out ways to deal with those emotions, consider taking photos of daddy going to the hospital (on a day he's not actually going) and putting them in the book so then she can look at the book and ask questions whenever she wants.

4. make a video or audio recording of daddy reading a (few) favorite story(ies) so if he has to be gone (daytime or bedtime) she can still have him "participate."

good luck, and you're in our thoughts

[DD]

I recommend a book called _Raising an Emotionally Healthy Child When a Parent is Sick_ by Paula Rauch.

[Jill]

K, I'm so sorry you're having to go through this. I also work at the American Cancer Society, in the publishing group, and there are a few books we publish that I would be happy to send to you if they could be helpful. The most appropriate to your question is called Cancer in the Family: Helping Children Cope with a Parent's Illness. It's actually being revised for a new edition but I would be happy to send you the current edition. We also have a couple of books on colorectal cancer. If there's anything I can send you, please feel free to send me an e-mail--twiggs7776@gmail.com.

[S]

Hi K - I hope you're able to find some moments to take care of yourself in all of this, too.... I wish your family the best. One thing that I thought of is that I know there are bereavement counseling services through Hospice for children. Thankfully that's not appropriate for you guys, but it might be worth a phone call to see who/what they recommend. They might know of all kinds of groups/programs/services for kids who have sick parents. Hang in there! Sounds like you're doing a great job of looking for resources and doing what's best for your family.

[riann]

check with your cancer center. the one in our area, Columbus, ohio, has a program for kids called good grief. it helps the kids find an outlet for their anger, grief, etc. it allows them to be themselves and not deal with the cancer. My guess is that they have support groups for just this very item. i wish you luck. My son was born with a rare heart defect when my dtr was just 3 years old. My mother in law came and stayed a month to try to keep some normalcy in the household since we were at the hospital with my son for 1 month. we did not get to see her much, which may have helped the pain on both ends. can anyone come up to stay and help out??? she may need that extra attention during this tough time.

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