- The first week of January 2017,
we had a freeze in Birmingham, you know,
that shut the city down.
So it was really cold, and his lips started chapping.
After a couple of days, I noticed that his lips
weren't healing as we put ChapStick on them.
The morning of the 9th, we woke up, he was really pale,
his lips were still chapped and bleeding,
and he was very lethargic.
Before we left the house,
he said he had to use the restroom,
and he started walking towards the bathroom,
and got really dizzy and fell and ended up vomiting.
So I immediately called the pediatrician and they said,
"We're gonna need you to go to Children's Hospital."
So we got to Children's, and did the tests,
and ended up admitting us,
and that started our nine-month
whirlwind of crazy, you know, cancer life.
He was diagnosed with a rare form of leukemia
called acute promyelocytic leukemia.
The standard treatment of care in the US for that is
the standard AML treatment.
You essentially spend six to eight months
of your life in the hospital.
- There's a very specific type of leukemia called
acute promyelocytic leukemia, or APL,
that's a subtype of AML.
And historically this has been
a very difficult to treat type of leukemia
that's required specialized treatments,
and, also, patients have had a lot of complications
of the disease itself, where patients will have,
unfortunately, bleeding and clotting events.
We call that coagulopathy, to use a big word.
And so we've done a lot of work to investigate,
how can we support the patients better,
provide better treatments,
and, essentially, have better cure rates for these patients?
- So, Dr. Kutny who is at Children's Hospital is one
of the nation's specialists on acute promyelocytic leukemia,
which is Asher's, and he was running a clinical trial that
takes away the standard AML treatment,
and just uses the arsenic and ATRA.
It was really a no brainer, you know, it's like, oh,
I don't have to spend, live in the hospital for six months?
And he doesn't have to, you know, go through
that horrific, you know, treatment?
Sure. Let's do it.
- So, with our historical treatment approaches,
unfortunately, we were only able to cure
about 50% of patients, and that was with
a really intensive chemotherapy regimen where patients were
in the hospital for months at a time and would have
many complications, a lot of infections,
'cause we were really attacking the immune system.
That therapy also had a long duration,
for almost two years of therapy.
With the new therapy that we pioneered and investigated
through the Children's Oncology Group
and spearheaded here at Children's of Alabama,
this was a much shorter therapy,
only eight months of therapy,
and almost all of it was done as an outpatient,
meaning that the children didn't have to stay
in the hospital, receiving their treatments.
They were able to be at home,
sleeping in their own bed, and going to school.
But what we saw is that as the children received them
they would feel essentially very normal.
They'd had very few side effects.
So when we looked at what was reported,
sort of their experience going through the chemotherapy
there was very few, compared to chemotherapy,
there's very few infections.
There's very few organ toxicities or other problems
that we sometimes see with our traditional treatments.
- The way it worked out is we ended up
spending four weeks at a time and five days a week,
for four weeks, at the Children's Hospital Clinic
getting this arsenic infusion.
And then we had two weeks at home, or four weeks at home,
and that cycled until September.
After his last treatment, he got his bone marrow biopsy,
and it showed that he was in full molecular remission.
- So the patient experience is so much better
and we're not as worried about sort of the long-term
side effects of some of those treatments,
'cause these children, as we cure them,
we look forward to decades of a long life
and a healthy life.
And we wanna make sure that what we do and curing them
with their cancer, doesn't set them up to have, you know,
long-term other health problems related to the chemotherapy.
So it's very exciting,
the research that we've been able to undertake
and the clinical trials that we've been involved in.
- Children's was amazing.
The amount of patience that they have
and love for these kids,
the doctors, especially Dr. Kutny and Dr. Payne,
they were extremely communicative,
always kept me updated,
did a very good job of
breaking down terminology and language and description
and things like that to help both of us
understand it better.
I don't think words are possible to say how much
that the hospital and the doctors
and the nurses meant to us.