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I've been in Baltimore for about five months.
Some of the procedures I've been through are a stomach
surgery to really just take out the tumor in the front and
a back surgery to take out the tumor in the spine.
I've also had a femoral osteotomy to
shorten my femur so my legs can straighten.
>> When I first met Rod in the clinic, he was in a wheelchair.
He was on very heavy pain medications.
He was very sedated on that heavy pain medication.
And anything I did in terms of rousing
him to ask him questions or
to try to do a physical exam was met with him moaning in pain.
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>> I had been looking for
answers since he was about three years old.
He used to complain about his right leg hurting, but
it wouldn't be anything that would just make you say,
my God something is wrong.
It was just like he'll wake up, my leg is hurting.
Give him some Tylenol, he's fine, he goes on.
Maybe six months down the road he may say, my leg is hurting.
And then just over the years it had gotten progressively worse.
And I'll never forget one day when I was getting all the kids
up, getting them out to school, and
Rob could not get on the school bus.
He just could not lift his leg up to get on the bus, so
I took him to an orthopedic doctor,
and he got diagnosed with having the schwannoma tumor.
He had surgery, I think it was three weeks later to his tumor,
and that helped a lot with the pain.
He went til about four years it carried him.
By the time he hit fifth grade you could tell that it was
growing.
It was starting to protrude in the back and in the stomach.
So we knew it was getting bad.
>> One of the reasons why we're here at Johns Hopkins today
is because we were not able at home, Atlanta, Georgia,
to get the type of treatment that we received here.
We were told that no neurosurgeon
should ever touch his tumor.
That any neurosurgeon who would consider touching his
tumor we should turn and do an about face and run.
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>> Roderick Ball's a really lovely 11 year old gentleman who
we met through email correspondence to begin with.
His parents were getting rather desperate about what they were
gonna do with Roderick, because he was having so much pain and
he was losing function in his legs.
About from the mid-thoracic level down, through his low back
and into the sacrum the spinal canal was filled with tumor.
And then the tumor was coming through the holes in the spine,
where normally the nerves come to feed the abdomen and
feed the legs.
Those holes on the right side are completely filled with tumor
and then the tumor extends into the right side of his abdomen.
>> Medical treatments had been tried,
chemotherapy had been tried.
Previous surgery had been tried, and yet he was still worsening.
And they could point to specific areas where he was losing
function.
When you looked at
his MRI it was just
devastating to
look at the extent
of tumor he had both
within the spine and
then all through
his abdomen.
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>> For Rod we felt that there was a reasonable balance where
we could get rid of let's say 70 to 80% of the tumor, and
yet still maintain normal function for him.
One of the problems we face with him is that his leg is
bent because he used to keep it that way cuz of the pain.
But in keeping it that way, it became deformed and
fixed in that position, so we've had to stretch his legs back out
into their normal position, and that's been a real challenge.
Dr. Sponseller, from orthopedic pediatric service, has been able
to do an operation to shorten the bone, lengthen the tendons,
and allow the nerve to stretch a little bit as well, so
that he can get his legs into a straighter position.
And we'll probably use a series of casts as we gently straighten
the leg back out, but
that puts him into a functional position where he'll be walking.
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>> My dad's routine is to come here for
a few days and go back to Georgia to work.
My mom, she stays here most of the time.
>> So having been here for going on five months, very difficult.
We can now see the light at the end of the tunnel,
which is, I gotta tell you is quite gratifying.
Today, he had his cast cut,
so he's now in PT, and he's stretching out, and presumably
he will be weight bearing hopefully the end of this week.
And so yeah,
I can't wait to be here to watch him take those first steps.
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>> So now we're gonna stand up just like before.
See, it's just like before.
>> Rod, if I can think of one adjective,
I would say resilient.
>> Rest your knees right here and bend your knees.
>> Has not once said, why me?
>> And press back.
All the way back. >> He understands that he is
here for a purpose, and that's to get himself better.
>> When we get a challenging case like a Rod Ball,
we're able to put together a team
that has clinical expertise in many different areas.
Who have research expertise, and who can bring
the latest research that's going in the laboratory, we can bring
it right to the patient in a very expeditious manner.
There are very few centers that can do that and
offer that to the patients.
>> It's a great feeling to know
that we are 90% through this thing.
And we feel like we are going to continue, if it takes
twice a year, MRIs here at Johns Hopkins,
follow up with the doctors here at Johns Hopkins,
and continue his treatment here.
>> My parents, they always say, if you really want something,
you gotta work at it.
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The pain is pretty hard, but
you're always gonna get through it.
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[SOUND] >> It's
definitely 100% better than what it was.
Just for Rod to be able to rest at night and
not scream in excruciating pain, and having
to take him to the hospital just to get the pain under control.
That's a blessing in itself.
And for him to be able to be mobile again, to get up,
if he wants something to eat, go get it.
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We know that we're doing the best thing for Rod, and
that's just the goal of all of this.
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