Sick Cookie

An idea that is overdue

2008-12-30T16:29:00.002-05:00

This is going on in Houston, but should be spreading across pediatric cancer treatment sites throughout the country soon. The program makes it easier for information about one's childhood cancer treatments to be accessed by his or her future physicians.

Personally, I find it incredibly intimidating to even think about looking for a primary care physician because of my history. I have a little card that explains my treatments, but it doesn't really explain the possible long-term effects of those treatments. Add in the fact that I am chronically lazy when it comes to scheduling doctors' appointments, and you get someone who should be seeing a doctor very regularly, but sees one only invariably. I wonder if something like this might make it easier for those patients like me.

Good news

2008-07-29T16:42:00.001-04:00

This is most definitely good news. The president signed the Caroline Pryce Walker Conquer Childhood Cancer Act into law today. The law calls for $150 million to be spent over five years for such initiatives as expanded pediatric cancer research and a national childhood cancer database.

PTSD in adult survivors

2008-07-16T15:19:00.002-04:00

Fortunately, I do not believe I have ever suffered from PTSD related to my treatment of leukemia 17 years ago. Unfortunately, nearly 25 percent of survivors do.

More from Wisconsin

2008-07-16T15:14:00.001-04:00

From The Reporter in Fond du Lac.

Wisconsin teen lobbies for research dollars

2008-07-16T15:10:00.001-04:00

Of course, we should never forget that treatments, which can cause late effects, also make it so we can experience late effects. Which is pretty important.

Jacob Froehlich of Wisconsin is lobbying his state legislators to fund more childhood cancer research because therapies developed in the last seven years saved his life.

A fighter

2008-06-11T15:00:00.001-04:00

Alex Dobay just graduated from high school. In the five years it took him to complete high school, he fought off non-Hodgkins lymphoma twice, but has now been diagnosed with acute myloid leukemia that could have been caused by his earlier chemotherapy treatments. He now faces a second bone-marrow transplant.

The Cleveland Plain Dealer has the story.

Childhood cancer legislation

2008-06-10T13:44:00.003-04:00

This legislation, which comes from Ohio's own Rep. Deborah Pryce, would provide $150 million over five years for expanded pediatric cancer research. The bill is named for her daughter, who died at the age of nine from neuroblastoma.

More late effects

2008-06-09T13:27:00.000-04:00

Hey... I had this drug.

Cost of Living

2008-06-02T14:53:00.003-04:00

This came from your's truly back in November, along with a first-person sidebar.

The first-person piece is my most concise writing on what it is like to be a long-term survivor of childhood cancer.

Childhood cancer rates by region

2008-06-02T14:44:00.004-04:00

This isn't late-effects related, but it is childhood cancer related. And you can't have late-effects without surviving childhood cancer.

Apparently childhood cancer strikes at a higher rate in the Northeast than anywhere else in the country. The Midwest doesn't lag far behind, though.

Here's the actual study, courtesy of Pediatrics: Official Journal of the American Academy of Pediatrics.

Learning to Live Again

2008-06-02T14:36:00.001-04:00

This is a nice piece from the Ottawa Sun, which frames late-effects around the severe effects suffered by a girl who had a brain tumor.

A new direction

2008-05-27T16:07:00.002-04:00

Sick Cookie is about to get a makeover. Soon it will be a repository for stories that revolve around childhood cancer survivors, and the long-term effects they often suffer because of the very treatments that saved their lives.

As most of you know, I am a childhood cancer survivor. In early January, I will celebrate my 18th year as a survivor. In my life, I have been a cancer survivor longer than I have been a non-cancer survivor.

I have been lucky thus far, no major long-term effects, yet. But that doesn't mean something won't happen. The number of childhood cancer survivors grows every year thanks to advances in treatment. As a member of one of the first generations of childhood cancer survivors, I feel it is my duty to tell our story.

I start today, with a nice package from the Los Angeles Times.

Lillian Claire Tullis

2007-06-15T09:22:00.000-04:00

Better late than never...

Lillian Claire was born May 24 at 10:04 a.m. She weighed 7 pounds, 5 ounces and was 18 1/2 inches long.

Here she is with Emery. A note on the photo... Emery is not smiling because he is holding his baby sister, although he very much loves her a lot. He is smiling because my mom's camera phone quacks when she takes pictures.

A little gas.

Mom and the kids at home.

Emery genuinely is excited here. There are no quacking camera phones around.