Pediatric Cancer Care – Nemours Center for Cancer and Blood Disorders

Pediatric Cancer Care – Nemours Center for Cancer and Blood Disorders


Marissa: It was February of senior year and we had just started lacrosse season and I was at a game and I got a bug bite. And when I looked down, the bump was massive. Months went on and it finally started to hurt when I was running. They sent me to an oncologist and I then ended up at Nemours and I got diagnosed, stage IV alveolar adenoma sarcoma, which is
a soft tissue cancer, two weeks before high school graduation. So all my college plans were put on hold and my world kind of like stopped. Dr. Sandler: Marissa is just an incredible
young lady and I think the most inspiring thing is that smile that she has,
which never quits. What makes the Nemours Center for Cancer and Blood Disorders unique is that we can pull on 15 doctors from around the whole enterprise. Dr. Kolb: Nemours is one of the nation’s
largest pediatric healthcare systems. And by bringing together our four institutions: Nemours/Alfred I. duPont Hospital for Children in Wilmington, Nemours Children’s Clinic in Jacksonville, Florida, Nemours Children’s Clinic in Pensacola,
and Nemours Children’s Hospital in Orlando, Florida – we are able to bring
together tremendous amount of expertise and experience. “Dr. Naga”: So one thing that makes our
program unique at NCH is that we have an interventional radiologist–there are
only two in the state. One of the advantages of interventional approach is to be able to deliver treatments right to the point of where you want it to work. And this could include treatments for cancer-like lesions. It could also include removing clots in very odd places. The oncology tumor board is a weekly occurrence. We’ll actually network with representatives across all the sites. In so doing, we get expertise of everyone sort of pitching in for the best care. Dr. Schwartz: Having this big network of people
really opens up the door for better communication. One of the things about
the Pensacola Hematology-Oncology Clinic that’s neat is just that it’s a
smaller clinic. And I think families feel that they’re getting attention. And I’m going to take care of them. If I don’t know the answer, I’m going to find it out. We might send someone to another center for a bone marrow transplant. And in that instance, you know, we would utilize Nemours in Jacksonville. Another example would be proton beam therapy. There’s only a few places in the country,
one of which is in Jacksonville. Dr. Sandler: So for our proton program, we
have patients coming from all over the world. It’s a different method of delivering
radiation. The advantage is that it will focus in on the area that needs radiation.
And that’s really important in terms of both side effects and risk of developing
other cancers later on. For children, it really makes a difference in
the long term outcomes. There are number of things I’m proud about
in our program – our research endeavor, Proton Therapy Program, our Sickle
Cell Program, expertise in treating brain tumors, and then our hemophilia team which is recognized throughout the country. Dr. Kolb: Here at Nemours Alfred I. duPont Hospital for Children, we have a Blood and Bone Marrow Transplant Program. And we’re
fully accredited by the Foundation for Accreditation of Cellular Therapies. And
this means that we’re able to provide the best care and meet the most stringent
quality measures for transplant patients in the United States. Our Sickle
Cell Program was designated by the National Institutes of Health as a Center
of Biomedical Research Excellence. So each of the sites are members of the Children’s
Oncology Group. Recently, each of our sites also joined together as an NCI Community
Oncology Research Program. Dr. Schwartz: NCORP status really speaks about
Nemours’ commitment to clinical trials and to research. Dr. Kolb: We’re really at the leading edge
of clinical research for children with cancer in the United States. One of our focuses
is to maximize the quality of life of that child during treatment and for
many many years to come. Mary Newman, RN: Our nurses are highly trained
and specialized and they go through a number of educational programs to
prepare them. They’re bringing new information to the bedside to always be advancing
our practice. And that always translates into better care for patients and
families. Marissa: They are the best staff in probably
the entire world. And I am so thankful that I was diagnosed as a child and
I was able to go there instead of an adult hospital. Barb Plummer, RN: We want your child to have
as normal a life as possible when they’re going through this process. We don’t
want them to stay in the house every minute. We want them to get out and play and
be a normal child. Parents feeling comfortable with what they need to do at home
– it improves the quality of life for the whole family. “Dr. Naga”: We have our Child Life Department
very actively following these children as they come into different areas. Dr. Kolb: And when you think about a cancer
diagnosis, you don’t think about fun and enjoyment. But kids will be kids. So we
make sure that every child has access to the toys and the games that they need to
get through their day. Marissa: From the doctors to the staff, I
mean to anybody, even the security guard that’s sitting down in the lobby,
they make it feel like you’re at home. They become almost like family. Dr. Kolb: We have a great team here at Nemours.
We have so many people that are invested in the care of our patients, so many
people that are invested in the experience of our patients, and for all of
our future children that we see here. Marissa: When I was first diagnosed, the first
question we asked Dr. Sandler was ‘what is the chance of survival’ when
it came to my type of cancer. And he told me, ‘You’re your own statistic.’ And
so I guess in my way I beat my own odds. I’m really grateful to my doctors because
they’re fighting to find answers just like I fought to beat cancer.