Right at diagnosis, everyone comes out of everywhere to try to help you.
And one of the things that I did in the very beginning was I tried to be this big, strong
person 'no I've got it, it's OK, it's all right, everything's fine, weíll take care
of this.'
It's very easy to sort of get into that mode especially given that we both are the type
of people that don't necessarily raise our hand and ask for help, hey I need help.
They're so overwhelmed, that asking for help or even taking help is not the first thing
they think of.
The first thing that they think of and what they are consumed with is 'what can I do for
my child?'
Neighbors, school friends and families they want to do something to help, so parents really
should let them help because they can't do it all and they may not realize that right
at the initial time of diagnosis but they, it'll become apparent very shortly.
You're so focused on the cancer, you're focused on your child.
You don't have time or the bandwidth to think of grocery shopping or anything like that.
And I think for me it was it was just that sense of there's other people that have my
back and it was a really good feeling you know in this storm.
Even your neighbors, you know as much help as you can get, you know, if they're offering,
accept it because it will make your life easier.
We did have people mowing our lawn, we did have people cooking meals and putting them
in a freezer.
I didn't have a chest freezer and I had someone buy us a chest freezer and put it in our garage
and then they filled it up.
To cope you need to invest in the community around you; whether it's your family, whether
it's your church, whether it's your friends from your children's school, your friends
from a community group, if they are at your side and they're saying what can we do?
Let them do it, let them help you walk through this.
I went down to pick up Jaden and Kim after his first chemo treatment when he was first
admitted to the hospital.
And two of the neighbors had gone around and put up on our next-door neighbor and their
mailboxes in our mailbox and our trees, yellow ribbons to show support for him.
Because I was able to humble myself and say I needed help and the community rallied around
us.
The only reason she's here today is because of people and people that helped us and so
she knows like I do we have to help other people.
I urge anybody who's just beginning this journey, not to be embarrassed by the things that they
need to feel good and to feel fresh and to feel human.
Because inside the hospital it smells different and it feels different and you can't control
what's happening to your child and you can't control the temperature of the room and you
can't control the light and you can't control the noise but you can control your shower.
That 10 or 15 minutes and it's really important and it may seem silly to someone just hearing
that their child's been diagnosed with cancer but I promise you that shower isn't silly
and take that time.
Definitely make sure that you're taking time for yourself whether that's a quick coffee
break, whether that's a quick walk outside to get some fresh air, take some time for
yourself.
For a parent to be effective as a parent they need some time away they need a little break.
And so a parent shouldn't feel guilty about if they spend the night at home and there's
another family member there with the child.
You don't want to set up the situation where the child who's been diagnosed with cancer
won't do anything if the mother is not right next to the bed.
I've had a number of families the, that people were athletes they were active, the mother
or the father was a runner and when their kiddo was diagnosed they just completely said
'I'm putting that on the back shelf.'
But that's what makes them feel strong that's what makes you feel energized to go on.
And so when you take that piece out you're just going to get beat down and beat down
and beat down and not be able to be there for your kiddo when you need to be.
If you can you know help yourself stay strong and take care of yourself you're going to
do a lot better taking care of them.
Helping siblings deal with this is difficult.
Emma, Jaden's sister, was only 6 years old when he was diagnosed and she knew something
was wrong with her brother, but didn't know how serious it was and we were at the hospital
and it was after his surgery we you know had to sit her down and tell her that her brother
has cancer.
Her biggest question to me was she looked at me she said, "Mom, is Jaden going to die?"
I didn't want to lie to her and say you know I don't know and that was the truth it's like
we were hopeful we have treatment we have good survival rating but the bottom line is
you really don't know.
And that was a tough conversation but it's, you know I would say you gotta be honest and
prepare for the worst and still hope for the best and try and maintain some sense of normal
for her and for Jaden too.
I stayed with Adrian in the hospital for one month and I didn't you know get to see my
6-month-old, it was really tough.
This is a time when you focus on the child who's sick the siblings can get lost in the
shuffle and you don't, you don't want that to happen so eventually you have to get to
the point where you cut out time to spend with the other siblings individually.
My role in it was obviously keep the lights on but also was caring for Emma because there
were episodes where Jaden had to be overnight at Children's and Kim would go with him I
was here holding down the fort so to speak, getting her on the bus, getting her off the
bus, dinner, homework all of it.
It's more meaningful than just you know dividing time it, it's for that child just like you
want to focus on the treatment plan and getting your child well, for the siblings they need
to come out well at the end of this too.
Having them go to sibling support groups, having them go to sibling camps where they
get to talk to peers who have like experiences, we need to be intentional about making sure
that the siblings are addressed because just like we want the kiddo to come out good with
cancer we want the siblings to come out healthy as well.
We scheduled mommy time and you know just a day for me and you know she and I.
And then of course there's some counseling involved school counselors we made sure they
were aware so they can help her because she did need to talk to some other people too.
You know between Emma and Jaden I think, they're very close I mean she adores her brother,
her big brother.
They always were but I think this brought 'em tighter.
Yeah, they're a little, they appreciate each other a little more, yeah they still fight
like siblings I mean it's sometimes I pull my hair out but they are very close and they
adore each other, you know they really do.
The diagnosis of a child with cancer or any type of serious life threatening illness is
gonna impact a parent's partnership whether they're married, whether they're in a significant
long term relationship or even if it's parents that are divorced.
It does put a strain on a marriage and you know it doesn't matter how long you've been
together, we did go to marital counseling.
Just, you do in any stressful situation you fight, you argue about stuff or you ignore
each other because you're too stressed on your own you've got your own way of dealing
with things.
I think it's important to communicate 'hey I need something', because not you know all
the time in a marriage it's normal anyway for one person to not, you know really see
the other person has a need and the other person doesn't communicate.
It was definitely stressful it was hard.
We had to do just sit on the phone and just talk with each other just to help each other
through because she would be exhausted or I would be exhausted at home and it was just,
very difficult.
And if your relationship is having difficulties then you're not going to be at your best and
have your energy to put towards your child.
And so if working on that and making sure you take time to keep your partnership intact
or at least keep good communication going then that's going to be important for you.
In order to preserve that relationship which obviously this is one of the biggest stresses
you can imagine for that relationship, you have to cut out time to be together as a husband
and wife and you know if it's just having dinner together one night.
Try not to get lost in the entirety of the situation and try to, try to stay in tune
with the other person.
It's really important to at least be intentional about communication and about making sure
that you're aware that that this type of life threatening diagnosis could impact your relationship.
It helped us realize that you know there's a lot of things that in life that we may get
stressed out about, this completely tops anything.
I strongly agree, it brought us closer, as a family, we took for granted the little things
you know back when before he was diagnosed and we definitely don't now.