Hi, this is Annie Fox with Family Confidential, Secrets of Successful Parenting.
My guest today is Heather von St. James.
Heather is an 11-year cancer survivor and a patient advocate in the cancer community.
Today we're going to be talking about having difficult conversations with kids, specifically
about parent health issues.
Hi, Heather, welcome to Family Confidential.
Thank you, Annie.
It is a pleasure to be here.
Thank you so much for making the time and your day and the work that you do.
And I just want to let my listeners and viewers know that you are a person who helps people,
it's cancer survivor yourself, and for cancer support around family issues.
And what we're going to be talking about today is how to have conversations with kids around
difficult topics, specifically around parents' health issues and then maybe more broadly.
So if you'd please give us a little background for yourself and your story.
Sure, thanks.
I was diagnosed with a really rare cancer 11 years ago.
My daughter was only three months old when I was diagnosed.
So here I'm a new mom and I'm diagnosed with a cancer called malignant pleuromysotelioma
and was told I essentially had 15 months to live.
Wow.
So, yeah, being a new mom, being told I might not live to see her second birthday and nothing
will cause a mom to fight harder than something like that.
So we sought out treatment halfway across the country out in Boston.
I live in Minneapolis and so we flew to Boston and I actually had a really crazy invasive
surgery.
I had my entire left lung removed.
And during that time, my baby girl had to go live with my parents, her grandparents.
And she had to live with them for three months.
So I missed, you know, basically three months of her life while I was recovering from surgery.
And that's not what you sign up for when you sign up to be a parent.
Oh, no.
And you know what I'm thinking?
I'm thinking about all the postpartum stuff.
The idea that your body has just given birth to this beautiful child and you want nothing
more than to bond with that child and now you're dealing with severe and very scary health
issues and wow.
Yeah.
It was the worst time of my life.
I just, every time I see a six and seven month old baby, I'm just drawn to them because
I missed that time when Lily was a baby.
And so I'm always drawn to these little babies when I see them.
And I think it's because I missed that time.
And so Lily's been raised with the knowledge of me having cancer and fighting cancer and
going for checkups.
She doesn't know anything different.
So this advocacy was born out of living it, born out of necessity and personal experience.
So just helping parents through the tumultuous times is really a passion of mine.
And I can understand it.
Absolutely.
Now you see, your daughter grew up with this reality in her life.
And so I'm sure there were times when she became more aware than as a one year old or
a two year old or maybe not where she was actually asking pointed questions.
And I'd like you to tell us a little bit about those times when she was old enough to have
an awareness and maybe be comparing your stamina and health to those of the parents that she
saw of her friends.
And how did you respond to questions, concerns, worries she might have?
Well she noticed, I don't know how old she was, probably kindergarten.
She noticed that I didn't have the stamina the other parents did.
But I really tried to do as much as possible.
Like I was really involved with her classroom and I would do things.
She just knew that I couldn't climb on the playground or run as much because I had one
lung and I just couldn't do as much.
But she was always cool about it and she always has.
She's like, oh, that's my mom.
She has one lung.
She can't do it.
Awesome attitude.
So she's always has been and we've always been very matter of fact about it.
It wasn't until she was like maybe six or seven that I think the severity of it and what
cancer really was started to creep into her mind, probably because of books they read
at school or things they talked about or maybe just us talking, you know, I was getting
ready to leave for an appointment in Boston and she had a tummy ache and I was like, honey,
okay.
She's like, yeah, my tummy hurts, mommy.
I was like, oh, well maybe it's something you ate and then she has these big eyes and
she looks up at me and the tears start welling up and she's like, I'm afraid and they said,
well, what are you afraid of?
She goes, I'm afraid your scans are going to come back good.
What if you have bad scans, mom?
And that really brought it home to me that she knows what's going on, that she understands,
you know, and she was pretty young at the time.
And so I just took the time to sit down with her and explain to her in pretty much the
best detail that I could that I'm seeing the best doctors and the reason that I do go to
Boston so much or at the time it was Boston was to make sure I stay on top of things.
So if anything were to happen, we could take care of it.
And then I would continue to be here for her.
So it was just reassuring her and making sure that she knew that why I was doing this was
for the best and not just because I had to, that we're staying in front of it and we're
not catching up to it.
Yeah, that's a really great way to frame it and kids can understand that.
It's kind of like, these are protective and preventative measures.
I know they understand that, like I'm just imagining, okay, it's raining outside.
And so you put on your rubber rain boots so that your feet don't get wet.
These kind of things are things that a kid can understand.
And I love the way you're describing the calmness and the amount of detail you gave her so that
you would reassure her and yet not sugarcoat things.
So she understood what scans were and all of that stuff.
So when you do advocacy work, Heather, with parents who may have older children at the
beginning of a diagnosis, when they first get it, how do you help them maybe with some
kind of advice or even a script or talking points when a parent has to talk about a diagnosis
for a life-threatening disease?
You know, a lot of parents that I talk to, their kids are adult children because the
patients are much older.
But there are the few that have kids who are six, seven years old.
And the thing is, I'm not here to tell people the right way to do things because I think
with each individual person, the way you handle it is right.
I think pretending nothing is wrong is probably the biggest mistake a person can make in shielding
a kid.
But that's my own thing.
But if that's what feels right to the patient, then that's what they have to do.
My job as an advocate is not to tell somebody the right way or the, you know, it's more
of to support them in their decision and maybe suggest things that might work better.
I never want to come from a place of a know-it-all.
Just because it worked for me doesn't mean that it's going to work for Susie down the
street.
Being upfront and honest is not always the right way for some people to handle it because
some kids, frankly, can't handle it.
Some kids need, as a need to know basis, and they can only handle little bits at a time.
And so those people know their kids far better than I would.
I know it worked for my Lily and Cameron.
My husband and I know it works for her.
But I can't say that would work for my friend Susie and her son Max.
So I come to you, I tell you that I have an 11-year-old and I was just diagnosed with
stage four breast cancer.
And obviously I'm devastated and my 11-year-old is very tuned in to me.
I'm not the kind of person who likes to sugarcoat things, but I don't want to dump a whole
bunch of scary stuff on my 11-year-old.
And so help me please.
I would say you know your kid better than anybody.
How much do you feel that they can handle?
They need to know what's going on.
They know you're sick.
Kids are intuitive.
They know you're sick.
They know you don't feel good.
They need to know that you're going to fight and you're doing everything that you can.
They want to know that you're fighting and that they don't want their lives to change
a lot because I think a lot of kids fear that their lives are going to be uprooted and changed
because they like security.
So making sure that the kids are secure as possible I think is really important.
And that yeah, things are going to be kind of crazy and mom's going to be sick and there
might be a few days where mom just can't get out of bed, but we need to be patient.
And this is the best journey that we're on right now and this is a time that we can really
take and spend together.
And I try to remind people to really cherish that time and be in the moment.
Because you don't know what's going to happen.
And I wouldn't promise like, oh, I'm going to get cured and I'm going to be 100% because
you don't know.
And but just, you know, we're doing everything we can tell your child, we're doing everything
we can to fight this.
I'm going to do the best I can and I need you as my partner in this and I need you to
help take care of me.
And I think enrolling an 11 year old in the caregiving, not as a caregiver, but as a partner
in your care, right, you know, cuddle up and watch a movie with me while I recover from
the came.
Oh, no, the important part of the journey, not just a tag along and try to keep things
as they need to keep going to school.
And then the other thing that I think is really important is resources.
There are camps called camp casem, which is my kids never gone, but I've talked to other
parents who have sent their kids and it's a camp that's specifically for kids of cancer
patients being around other kids who know and who are going to do the same thing is
so important.
And so it's finding those resources for the kids, a therapist is a good thing.
You know, care, support groups, whatever they need to help get through this, you know, to
help people at school, what's going on.
So the teachers know that's a big important part is I have told every single teacher that
my daughters had that I go to Houston, now I go to Houston instead of Boston.
My doctor moved, but I tell them that I travel twice a year for these checkups and I always
let them know why I said so if Lily's a little distracted or she seems worried or occupied,
that's why so it's enrolling the community, you know, your immediate community in with
your care so they know what's going on so they can wrap your child in that bubble as
well.
Enrolling the teachers, enrolling the cub scout or the girl scout troop and try to keep
things as normal as possible for each other.
You made some wonderful points here Heather, things that I might necessarily have thought
of off the top of my head, but obviously coming from your experience, you know what works,
but I think even though you say everybody, every kid is different, every family situation
is different, these are great takeaways.
The idea of getting support for your child and the idea of a group of some sort, be it
a camp or a support group that's led through a private therapist, where there are other
kids who are going through similar kinds of things at home so that they can open up and
not feel like the odd person out, the idea of letting teachers know and empowering your
kid to open up to friends so that friends know what's going on.
I think that what we know about tweens and teens is they often put a mask on their feelings
of vulnerability and that adds a whole other level of stress to what's going on.
If they can be open and honest with close friends about what's going on, those friends
again can act as part of the bubble when other people are intruding and your child who's
dealing with so much other stuff needs some more defensives.
The other thing that you mentioned, which I thought was brilliant, is including the child
in the caregiving team in an appropriate way, obviously, so that the child doesn't feel like,
as you say, a tag along and just kind of watching helplessly, there is something so empowering
is like, I'm helping my mom or my dad get better by bringing her a cup of tea, by sitting
with her, by rubbing her shoulder if that's what she wants, where I could say, what can
I do to help mom instead of like, oh, everything's fine, honey.
I think those are three beautiful and very doable things.
A really neat story to add on to that.
When I was going through surgery 11 years ago, I met this wonderful family.
Her name was Lisa, and her husband, David, was in the hospital very, very sick.
Her daughter, Emma, their daughter, Emma, was there with them when she could be, but she
wanted to be there as much as possible.
They lived, I think, in upstate New York, but came to Boston for treatment.
She enrolled Emma in the caring of David, and when David went home on hospice, Emma was
right there along, helping change the drains, the chest tubes, taking care of everything.
Now fast forward 11 years, that 13-year-old girl is now a nurse, because she was so moved
and so impacted by taking care of her dad when he was on his deathbed in hospice and
in the hospital, and being enrolled in that, she's taken it to that next level in her life
where now she's a critical care nurse, and she graduated at the top of her class because
now through the magic of Facebook, I'm still friends with them.
So it's been amazing to see Emma grow up and go through school and become a nurse and be
so passionate about it because of that life experience.
The other part of that, as I see it, is that when you give kids an opportunity to be humane
in their humanity, they grow in all kinds of ways.
So this is, you know, as challenging as all of this is for a family, the more we can come
together, the more we can all grow through it.
I don't believe that sincerely.
Wow, good stuff here.
We only have about a minute left already.
I know.
I know.
I would love it if you'd give our listeners and viewers an opportunity of where they could
find out more about your work on the web.
You can find my blog at the Mesothelioma Cancer Alliance or mesothelioma.com.
You can find me on Facebook, Heather von St. James.
You can find me on Twitter, Heather VSJ on Instagram, Heather VSJ, I'm all over social
media, just Google my name, you'll find me.
So I'm always available, not just mesothelioma patients.
I like to talk to patients across all spectrums of cancer because I think it unites us.
So I love being a patient advocate.
I love helping people through the hard stuff, and I'm real passionate about the parenting,
and that's what's really important to me.
And the love's coming right back at you, Heather, because you do wonderful work.
Thank you.
Thank you so much for your time today, really appreciate it.
Thank you so much.
This is Annie Fox, her family confidential.
To learn more about my work with tweens, teens, and their parents, visit annifox.com and
check out my new parenting book, Teaching Kids to Be Good People.
Progressive Parenting for the 21st Century, and my latest book for teen girls, the Girls
Q&A Book on Friendship, 50 Ways to Fix a Friendship Without the Drama.
And please rate us on iTunes, it helps other folks find the show.
Family confidential podcast is produced by Electric Egg Plant, creators of books and
apps for parents, kids, tweens, and teens.
And tune in next time, where my guest will be Dina Babu.
Dina is the co-founder of the Fatherless Daughter Project.
Until next time, happy parenting.
