Posts Tagged ‘ childhood cancer ’

Why Aren’t We Doing More to Help Kids With Cancer?

Tuesday, June 11th, 2013

Growing up, I don’t remember ever knowing about a child who had cancer. These days, I know of many. That’s probably more due to the internet than actual numbers; the American Childhood Cancer Organization says that the incidence for some types of childhood cancer have increased only slightly since the 1970s. Blogs like Rockstar Ronan (one of our Blog Award winners this year) introduce us to the families who’ve been dealt the awful hand of childhood cancer, and in that way, lots of us now know about children with cancer.

I want to share the story of another child, Brooke Healey, pictured here (and further below). Her parents, Steve and Stefani, grew up with my husband; Steve is one of my brother-in-law’s closest friends. Another special connection we have to Brooke is the fact that she was born on the exact same day—September 3, 2008—as my younger daughter.

In January, seemingly out of nowhere, 4-year-old Brooke was diagnosed with diffuse intrinsic pontine glioma (DIPG), a tumor in the middle of the brain stem. Its location and the way it grows into the nerves means it cannot be removed. One researcher described the prognosis as “dismal, with less than 10 percent of the patients being alive 2 years from diagnosis.”

Because Steve and Stefani are both very active in their community—he as a longtime teacher and coach, she as part of her family’s wonderful music and performing arts school—and because a child with cancer touches absolutely everyone who hears about her, the Healeys have been flooded with support. It’s come in the form of financial help, emotional support, daily meals, t-shirts and bracelets and car magnets, fundraising events, a trip to Disney from Make a Wish, and most recently, a few Brooke-inspired tattoos.

The Healeys have been extremely generous, too—they blog about their journey and let us in their world. Steve’s posts are a marvel: detailed, direct, sometimes even funny. And Stefani is a woman of few online words, but when she posts, boy, she makes it count. Right after the diagnosis, when she and Steve made the excruciating and very risky decision to have Brooke’s tumor biopsied in the hopes of learning more about treatment possibilities, she wrote, “Am I comfortable with the decision? I will never be ‘comfortable’ again.”

Brooke underwent six weeks of radiation at Memorial Sloan Kettering Cancer Center in NYC. It was meant to relieve her symptoms and give the family—which includes Brooke’s 6-year-old brother Ashton and 2-year-old sister Bryn—a reprieve. That hasn’t happened. In fact, Brooke has had many health scares along the way. She has trouble breathing and walking unassisted, and the steroids she’s been taking has made her extremely uncomfortable and rendered her almost unrecognizable, as you can see from this photo taken a few weeks ago:

In the midst of all this, Steve has been exploring every possible lead on treatment options. It seems that if there is a person in this world who has information about DIPG, he has contacted them. As a direct result of his tenacity, Brooke will have some tests next week at the National Institutes of Health to determine her tumor’s progression.

Obviously, the Healeys’ main goal is for their child to get better. But they also want to get the word out about DIPG and raise important questions. Why is so little known about such a deadly cancer? Why is childhood cancer in general so underfunded? It’s unsettling, to say the least, to learn that in 2011 breast cancer researchers received $625 million from The National Cancer Institute, a government organization, while pediatric cancer—all forms—received a total of $197 million in research dollars. A pessimistic but popular theory behind the disparity is that since children can’t vote, they’re simply not as important to politicians, who have a say in determining how much money is allotted to research. Another possible reason: It’s hard to get funding for projects that seem unlikely to have a positive outcome.

Are you wondering what can you do?
·     This change.org petition to boost funding is looking for 1 million signatures. They’re a looong way off. So signing that is a good first step.

·     You can share this incredible video about DIPG.

·     You can visit BrookeHealey.com and leave a message of support for Brooke and her family or make a donation (because there’s no clinically tested treatment, insurance covers very little).

I’ll end with an excerpt from a recent post by Brooke’s mom:

I am thankful that Brooke is at preschool today, and wanted to stay extra long for lunch. I am thankful that her teachers accept her there and stay longer for her and get extra help for her to facilitate her needs. I am thankful that the kids accept her and that if they ask a question about her appearance the teachers answer in a way that makes it as painless for Brooke as possible.

I am thankful that her teachers from every year that Brooke has been in school still care for her so much. When I pull up to her old school, and her new school, and see Believe in Brooke magnets on cars, I am literally stopped in my tracks. When I see a random third-grader wearing an “I wear Grey for Brooke” shirt, I get choked up. When a fifth-grader rings our doorbell and drops off money from his school project that was about Brooke, or another little girl sends us the money from her lemonade stand to help Brooke, or a class of fourth graders send us a packet of homemade cards… I am so thankful that we get to witness this.

I am thankful that we have a tentative plan in place to get Brooke to summer camp with an aide. I hope she can go and I hope she has a good time.

I am thankful that Ashton and Bryn are so caring. Ashton wants to help her so much. He treats her like gold. And Bryn wants to help her too. She rubs Brooke’s hair and says “cute.” Brooke then proceeds to smack her. Brooke has always been the one in charge and she doesn’t want sympathy from anyone… haha! She does enjoy telling Ashton what to do for her, though. That still fits into her personality just fine. And he jumps to it. He always has.

I am thankful that I know so many think about us, care for us, pray for us. It does not go unnoticed. I do not know everything that everyone has done… but I learn more everyday. It helps.

I am thankful that Steve and I can still work together to care for our kids. And we have even gone out to dinner.

I am thankful I have made it to the gym a couple of times.

I am thankful I have all three of my kids with me, that we packed three lunches today.

I am thankful that we still have hope that it is just taking her extra long to recover from radiation and that she will continue to improve.

Brooke is the smartest, wisest girl I have ever met. (Of course.) She asks questions about medical equipment that are uncanny: “Why are they using that color needle for my port?” WHAT??? I don’t know!!! And “I’d like to learn sign language so that if I have trouble finding my words, I will be able to tell you what I need.” Ummm… OK??? She has already mastered quite a few signs. She is able to manipulate almost any situation to get what she wants. She calculates how she will do it, and then carries it out. It is a full time job for me to negotiate around her to make sure we are always doing what is best for her. She remembers EVERYTHING. She is thoughtful, kind, beautiful, wise, silly, and she knows how many people care for her. In her heart, she does know.

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Honoring Children with Cancer in September

Wednesday, September 12th, 2012

Nearly 13,000 kids under the age of 21 are diagnosed with cancer every year and, according to the American Childhood Cancer Organization (ACCO), nearly 25 percent of kids diagnosed per year will not survive the disease. This is why September is dedicated as Childhood Cancer Awareness Month.

Even though President Obama’s proclamation this year revealed that ongoing research and treatment has led to outstanding progress (the five-year survival rate for all childhood cancers has increased from less than 50 percent to 80 percent over the past several decade), there is still much work to be done.

Below are ways to learn more about the disease and to engage with affected communities:

More information about childhood cancer can be found on Parents.com:

 

Image: Awareness Ribbon – Bone, via Shutterstock

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Parents Daily News Roundup

Thursday, June 7th, 2012

Goody Blog Daily News Roundup

CT Scans Increase Children’s Cancer Risk, Study Finds
Researchers say the small but significant increases in the risk of leukemia and brain cancer do not mean that CT scans should be avoided entirely, but that the test should be performed only when necessary.

Boy Scouts Consider Opening Organization to Gays
The Boy Scouts of America will consider dropping its longtime opposition to allowing gays and lesbians to serve in the organization after it received a petition signed by 275,000 people at its national annual meeting.

DNA Blueprint for Fetus Built Using Tests of Parents
Researchers put together most of a fetus’s genome using a mother’s blood and father’s saliva, heralding an era when parents might know much more about a child long before its birth.

Less Folic Acid in Pregnancy Tied to Autism: Study
In a new study of California moms, women whose children had autism recalled getting less folic acid through food and supplements early in their pregnancies than those whose kids didn’t develop the disorder.

Baby’s Cells May Transfer to Mom During Pregnancy
During pregnancy, and even decades later, a baby’s influence on mom runs deep — cell deep. While the fetus develops inside the womb, its cells mix and mingle with the mother’s after traveling through the placenta, and can stay there for years.

Report Finds Kids’ Vaccines May Have Been Improperly Stored
Free vaccines meant for children as part of a U.S. government program may have been stored at the wrong temperature, which could make them less effective, according to a report released on Wednesday.

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Parents Daily News Roundup

Tuesday, June 5th, 2012

Goody Blog Daily News Roundup

Fever in Pregnancy Tied to Autism Risk
Running a fever during pregnancy is associated with a risk of autism spectrum disorders and developmental delays in the offspring, a new study reports.

Disney to Quit Taking Ads for Junk Food Aimed at Kids
The Walt Disney Co. is announcing today that it plans to advertise only healthier foods to kids on its TV channels, radio station and website.

Mystery E. Coli Infection Claims 6-Year-Old Mass. Boy
The death of a 6-year-old Massachusetts boy after a mystery E. coli infection continues to stump health officials searching for the source.

Study: Childhood Cancer Survivors Face New Risks
Women treated with chest radiation for cancer when they were girls have a higher risk of developing breast cancer than previously thought, doctors warn.

Opting Out of Vaccinations Could Get Tougher in California
The re-emergence of some vaccine-preventable diseases has prompted the California legislature to consider a bill that would make it more difficult for parents to opt out of vaccinating their kids.

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Parents Daily News Roundup

Friday, May 25th, 2012

Goody Blog Daily News Roundup

More Kids Eating Detergent Packs, Docs Report
Miniature laundry detergent packets arrived on store shelves in recent months as an alternative to bulky bottles and messy spills. But doctors across the country say children are confusing the tiny, brightly colored packets with candy and swallowing them.

Childhood Cancer Effects May Linger in Adults
Survivors of childhood cancers have an increased risk of disfigurement and persistent hair loss later in life, and for some that may lead to long-term emotional distress, suggests a new study.

Study Links Obesity to C-Section Births
Elizabeth Cohen discusses a study linking babies born via C-section to obesity.

Supreme Court Rules Against Benefits for Posthumously Conceived Kids
Karen Capato used her deceased husband’s frozen sperm to conceive twins. The Supreme Court has ruled the kids aren’t eligible for federal benefits because of their posthumous conception.

9-Ounce Newborn May Leave the Hospital
Kenna Moore was born at a wee nine ounces, perhaps one of the smallest babies in the world to survive.

School Plans Condom Giveaway for Prom
Bedford-Stuyvesant Preparatory High School in Brooklyn, N.Y. will make 500 condoms available at the school’s June 7 prom.

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Parents Daily News Roundup

Wednesday, April 25th, 2012

Goody Blog Daily News Roundup

Fertility Drugs More than Double Childhood Cancer Risk, Scientists Say
Children born to women who took fertility drugs are more than twice as likely to develop leukemia, French scientists announced Tuesday.

N.J. Father Catches Teacher Abusing Autistic Son
When Stuart Chaifetz, a father in Cherry Hill, N.J., was told his autistic son was acting uncharacteristically violent at school, he sent him to class wearing a hidden recording device that caught a teacher on tape bullying students.

Report: ‘Octomom’ Home Photos Spark Childhood Services Probe
Photographs leaked to TMZ by the former hairdresser of “Octomom” Nadya Suleman purport to show the mother of 14 and her children living in “squalor.”

How Bullying and Abuse May Age Children Prematurely
A hard life can age you, literally, researchers say. In fact, children who are exposed to violence at a young age show changes in their DNA equivalent to several years of premature aging.

A Child’s Helping Hand on Portions
After being bullied about his weight for years, Marshall Reid, a sixth grader from Sanford, N.C., decided to diet, and chronicled his efforts in a book, “Portion Size Me: a Kid-Driven Plan to a Healthy Family.”

When Water Breaks, Does Labor Need to Be Induced?
Pregnant women have long been told that when their water breaks, they should be ready to deliver the baby within 24 hours to avoid infection. But a small new study suggests labor may not always need to be induced.

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Parents Daily News Roundup

Wednesday, April 11th, 2012

Goody Blog Daily News Roundup

Hospitals Pressured to End Free Baby Formula
New parents leaving U.S. hospitals often take home a corporate gift along with their babies: a tote bag filled with infant formula. Consumer advocates want to end the giveaways, which they say undermine breastfeeding.

Can Autism Really Be Diagnosed in Minutes?
A Harvard researcher says he’s achieved exceptional accuracy in identifying autism by using just seven online questions and an evaluation of a short home video of the child, instead of conventional, face-to-face exams that can take hours.

Child’s Cancer May Not Boost Parents’ Divorce Risk
Parents of children with cancer may be under emotional strain, but they are no more likely than other couples to split up, a new study concludes.

Super Surrogate Gives Birth to 15th Baby
Over the years Meredith Olafson has given birth to 15 babies – but only four of them are hers.

Connecticut Boy Brings Heroin to Kindergarten Show-and-Tell; Stepdad Arrested
A 5-year-old boy found dozens of bags of heroin inside a jacket he had taken to school and showed them to his kindergarten classmates, the school superintendent said Tuesday.

The Hot Names of 2012, Revealed
Baby names 2012 are already proving to be very different from last year’s choices, with The Hunger Games taking over from Twilight as the primary cultural influence on names, the hottest boys’ names taking a cue from the girls, and musical names trumping Hollywood for inspiration.

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Parents Daily News Roundup

Tuesday, March 20th, 2012

Goody Blog Daily News Roundup

Fewer Kids Dying From Leukemia
Kids with one type of leukemia are living longer than they used to, most likely thanks to new drug combinations that mean fewer patients are relapsing after a first round of treatment.

Keep Kids Away From the Medicine Cabinet
The report, which contains poisoning data from the Centers for Disease Control and Prevention and the American Association of Poison Control Centers, reveals that while overall U.S. poisoning deaths among kids plunged by half from 1979 to 2006 – the percentage of those deaths from medications – both prescription and over-the-counter products – has nearly doubled, jumping from 36% to 64%.

Gunman Reportedly Filmed Lethal Shooting Spree at French Jewish School
French authorities offered new details on Tuesday of an assault that has stunned the nation, saying the lone gunman seemed to be filming his actions as he shot his victims to death.

9-Year-Old Gets Jury Duty Summons: What’s That?
His dad says he’d have one weakness as a juror: ‘If someone offered him an Xbox game, he would do as he’s asked; but besides that, he’s a very impartial kid.’

After Daughter’s Drinking Death, Mother Tells Teens: Look Out for Each Other
When Molly Ammon had too much to drink at a spring break party, her friends put her to bed to sleep it off. She never woke up. Now, her devastated mom is warning other teens of the dangers of binge drinking, hoping to save another child’s life.

Neveah Reynolds, 4, Saves Sister, Kazmirah, 2, From Drowning In Pond
Neveah Reynolds, a 4-year-old from LaFollate, Tennessee is hailed as a hero after saving her 2-year-old sister, Kazmirah, from drowning in a pond.

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