To hear that your child has cancer is...It's devastating.
It was just like the world had stopped.
It's important for me to talk to other parents because what we're dealing with, what I've
had to deal with, what they have to deal with, you are literally dropped into a foreign country
and that country is the hospitals and the doctors and the lingo.
The whole language of medicine, the language of treatment is going to be foreign to anybody
unless they've been in this field and we try to provide information and explanations in
ways that you can understand them.
It is very overwhelming and it happens fast.
You don't even have time to process 'hey my child has cancer,' let alone everything that's
happening.
They're telling you treatment plans, social workers come in the room, insurance companies
are calling, you're signing paperwork and you still haven't processed that piece of
it.
I think it's very tempting to get real cerebral about it and want to know all the answers
I think in those first couple of days it's important to trust and to trust the medical
professionals, to trust the social workers and to kind of breathe and be there for your
child.
Many of the things that we go over and we tell a family, they won't remember but that's
OK.
We want to go over it and over it again and again and we hope that they'll ask questions
again and again and again.
Because that's the only way they'll have confidence and trust in their doctor and their medical
team.
The emotional low I think came in the very, very beginning after he came home from surgery,
he didn't really want to talk, he didn't really want to interact with us, he asked Kim 'why
does God hate me'?
Kids that are going through this, kids that have been diagnosed with cancer are going
to ask really tough questions.
They're going to cry they're going to be upset they're going to say 'what did I do wrong?
How did, you know how have I done anything to make this happen?'
And we as providers we have to answer those questions to kids and we would answer them
the same way we encourage parents to answer them which is to just reassure them.
We know the truth, the truth is that they of course have done nothing wrong that has
caused this and you just have to continue to provide that reassurance.
Every single child that walks in the door, our goal is to cure them, and we do have hope.
We have hope that what we have available will cure their child with cancer.
There's lots of different diagnoses and some kiddos don't have as good prognoses as other
kiddos have but from our perspective we have hope for every single one of them and we want
the parents to feel that too; that that we have a path forward for them.
What I would like is for parents to glean some hope out of this.
Hope because they're in probably the most desperate situation that they've ever felt
in with their child just being diagnosed with cancer and just in the depths of their despair
over that to be able to see another family who says 'you're going to be OK you will get
through this.'
And to have them as the example I just hope that that gives them a seed of, of hope and
something to look forward to at that time.
A second opinion is something that we encourage with all the families and it's if there's
any question about the diagnosis by getting a second opinion you can confirm the diagnosis
and then making sure that your treatment is appropriate.
I think it's definitely good to get a second opinion if you don't have that prior background
history about it just so you can confirm and you don't have to worry about or are they
getting this right or are they giving us the correct information, do they have the correct
diagnosis?
I did not get a second opinion, and this is why.
Children's National Medical Center belongs to the Children's Oncology Group and I learned
early on that the Children's Oncology Group is Oncologists all over the world working
on these protocols.
And, so I feel like I have a million, not a million but thousands of second opinions
because of all of the brains that have worked together to come up with these protocols.
Often times it depends on the diagnosis, and you may not have the luxury particularly with
some very fast-growing cancers, some leukemias, lymphomas where you have to act very quickly.
We did not get a second opinion for that reason and it was just by the time we got to the
MRI and they said it was cancer it was time for treatment.
However, that still doesn't mean that you can't refer to other doctors, contact other
doctors and tell them the situation and ask what they would do in that situation.
It's important to choose a hospital that specializes in children's oncology because children's
bodies are frankly very different than adults.
The types of cancers that occur in children and adolescents are not the same as the types
of cancers that occur in adults.
Probably the best place is at a children's Oncology Group institution and this is a network
of children's hospitals, medical centers, university centers that have experts in the
treatment of childhood cancer and they run trials to get the best or to develop the best
treatment for children with cancer.
There are multiple ways that you can find one of the Children's Oncology Group centers
or a center that specializes in treating children with cancer.
One of the ways is to look at the Children's Oncology Group website and they actually have
a map that you can look where you are located and find the institution that is closest to
your home.
In addition you can go to the NCI website and they also have a cancer information service
that you can call which is 1-800-422-6237 or you can ask your pediatrician who may also
have some suggestions as well.
I know that a lot of the local hospitals are going to consult those facilities so it's
best to take it, take the child straight to the source.
And that's what they're trained for they have groups of doctors who do this every day so
they know from experience what to do.
It's really important that you feel comfortable that you have, as a parent that you have a
good grasp on what's going to be done to your child and that you feel this is the best place
for your child's treatment .