Posts Tagged ‘ DIPG ’

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 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 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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