Childhood Cancer: Awareness = Funding = Cures

Monday, September 09, 2013

By Guest Blogger Tamar Petty

This is the last picture taken of Leah (and myself) before our world was turned on end by childhood cancer on January 26, 2012. It was taken at a birthday party that was filled with fun activities, but not enjoyed by my daughter. She spent much of the party wanting to be held like this. That’s part of what prompted me to call the pediatrician the following morning. After another appointment of not “finding” anything wrong, the doctor recommended we draw some blood. Later, my pediatrician would tell me she had spun the blood five times, hoping that the result would change. It did not.

We were referred to Brenner Children’s Hospital Pediatric Hematology/Oncology Clinic for more detailed blood work. Best case scenario: testing would confirm Leah had mono (which would account for her persistent tiredness); worst case: leukemia.

I stayed focused on the best case option until the new blood work came back. The pediatric oncologist said the results showed nothing “abnormal” yet, NO ONE in the room was smiling, including my husband (an adult oncologist). That’s when I KNEW something was very wrong. A spinal tap was performed and we went home to wait the results. A few hours later, as Leah woke from her nap screaming and with a fever, I called my husband. I caught him as he was driving home. He had gotten the “report” from the pediatric oncologist and was coming home to tell me in person. My call had caught him off guard. I heard the urgency in his voice, “I’m almost home!” I asked, “What is it?” His answer, “It’s leukemia.”

In an instant, our life changed. The month of September is National Childhood Cancer Awareness Month.

Did you know???

• More kids are lost to cancer in the U.S. than to any other disease.
• Worldwide, a new child is diagnosed with cancer every 3 minutes.
• In the U.S., 46 kids will be diagnosed every school day.
• Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS. Yet, pediatric AIDS receives four times the funding that childhood cancer receives.

As you increase your awareness, the question remains: What can YOU do to support childhood cancer?

There are many ways, both big and small, you can do to show your support to families like mine, kids like Leah and those who will be forced to walk this same road when they get the diagnosis.

1. GO GOLD! Wear a gold ribbon, tell a friend, change your facebook status or send out a tweet about National Childhood Cancer Awareness Month!
2. Set up a lemonade stand and donate the proceeds to Alex’s Lemonade Stand Foundation for Childhood Cancer. You can also make a donation at the register at Toys R Us.
3. Donate whole blood, platelets, or blood products. Our kids need transfusions to keep them alive.
4. Support Kids of Childhood Cancer It is a local organization created by a childhood cancer mom where a majority of the money goes directly to our kids and families at Brenner Children’s Hospital.
5. Hold a bake sale to benefit Cookies For Kids Cancer!
6. Know where your donations are spent when supporting the ‘big’ cancer foundations. You will be surprised.
7. Donate gift cards for families at Brenner Children’s Hospital pediatric oncology unit. Most useful are gas cards, gift cards for food( cafeteria, Subway, or Einstein’s Deli ,located in the hospital or restaurants near/around hospital), parking passes (Yes, parents have to pay to park when their child is hospitalized and it adds up! Purchase at parking lot kiosks and donate to inpatient unit.) or a roll of quarters for vending machines to Brenner Children’s Hospital pediatric oncology department.
8. Shave your head for St Baldrick’s Foundation. Come downtown to Finnigan’s Wake on Saturday, September 28 from 2pm until 6pm. You can watch my son have his head shaved for the second year in a row in honor of his sister! Not ready to shave or out of town? You can support Team Petty by searching for our team by name on St. Baldrick’s website. Money raised will stay here at Brenner’s Pediatric Hematology/Oncology department.
9. Know someone in treatment? Please reach out. Make a phone call (to say you care, not to “get all the details”.) Send a text. Send a card. (Don’t send flowers, though, because they are not allowed because the kids’ suppressed immune systems.) Mow a yard, run errands, take siblings for play date. Try not to ask, “What can I do?” but rather, make specific offers, such as, “I can bring your kid(s) home from school on Mon/Wed/Fri.” or “I can feed and walk your dog for the next 2 weeks, if needed.” Childhood cancer is isolating, lonely and painful. Show you care. It is also LONG. My daughter’s treatment is over 2 years! Continue to offer support, because some of the initial “shock” may wear off, but the road is still long.
10. Share this blog! Easy, right??

Today, Leah is still receiving treatment. She takes most of her chemotherapy drugs at home with periodic blood work and check-ups. Every 3 months she goes in for a high dose injection of chemo and is sedated for a spinal tap where chemo is injected into her spinal cord and circulates to her brain. She will finish treatment on March 29, 2014 and we CAN.NOT.WAIIT! We pray that childhood cancer will be a part of her story later in life, that she was a brave warrior and a survivor! We do not know yet how the story will end. One thing we do know is we have been forever impacted by it and can never go back to being unaware.
Comments
Katie commented on 09-Sep-2013 08:43 AM
Tamar, thank you for sharing your story on TMoM, and for all your childhood cancer support ideas too. Lots of prayers to Leah, and so happy to hear her last treatment date is so near! She's a warrior!
Sarah commented on 09-Sep-2013 10:31 AM
Such an important message!
Clea Brott commented on 09-Sep-2013 02:14 PM
Tamar, Since our high school days, you have always express yourself in the written word so well. You are an amazing writer and advocating for Leah and other children battling cancer puts your writing skills to their best use! Thank you for your vulnerability and honesty. I care. Clea
Mary Mollitt commented on 09-Sep-2013 05:22 PM
Hey Tamar! I think we have some mutual friends and I also recognize your name from when you made a comment on my daily blog about Mary Time that I had recently on TMoM. I just wanted to tell you that I invite you and your daughter to any Mary Time class/session you would like to attend (at no charge). I have a Tuesday 9:30 and a Thursday 9:30 that I think, would work best for her age. If those do not work for your schedule, please email me your availability and I will figure something out for her to participate in. So, if she is up for it, I would love to have her. You, your husband, son and sweet little girl are in my thoughts and prayers. - Mary Mollitt
Robin commented on 15-Sep-2013 08:27 PM
Thank you for sharing your story. I had the wonderful opportunity to meet Leah . I taught/teach Stretch N Grow at Messiah. I enjoyed watching her grow as well as her hair throughout the last year. She is absolutely beautiful and wish her all the best. That and I miss her this year.😞
Katye Oliver commented on 12-Aug-2014 12:06 PM
Tamar, This is a great article. I am thankful to see that Leah is doing well! It's true that there is far less funding for childhood cancer than other childhood illnesses. Thank you for increasing awareness, especially in our community. I am the co-founder of Kisses4Kate, another local 501c3 which supports children with cancer and their families at Brenner. We would love to be added to your list of "ways you can help". We are a small group of moms who volunteer our time - all our proceeds benefit the families we support. We sponsor and fund the Beads of Courage program (www.beadsofcourage), an international, therapeutic "narrative" program which helps children "share" the story of their treatment journey through beads. We also created the Gowns4Girls program, a program where volunteers lovingly sew unique gowns for girls undergoing treatment. In addition, we created the Pillows4Parents program. We have worked with Industries for the Blind, Cornerstone and SE Logowear to create custom-made bedrolls which fit the in-room futons and recliners to add an extra measure for parents/caregivers while in the hospital with their "fighter". We have our 3rd annual ball this year on Oct 4, 2014. Again, proceeds go to help children with cancer. Tickets will be on sale on our website starting Aug 19 at www.kisses4kate.org. They are $50/person, $85/couple and include dinner, entertainment and auction. We'd love to have the support of your readers who want to help make a difference. Thank you again for sharing your personal story.
Michelle Boyte commented on 12-Sep-2014 12:04 PM
Tamar,
So wonderfully written. Thanks for sharing your (and Leah's) story. You never think it can happen to you...until it does. Thanks for raising the awareness and offering hope.
Molly commented on 29-Oct-2014 08:49 AM
As a member of the moms of childhood cancer club (my then 2 yr old., now 4-Wilm's-Stage 3) I applaud and appreciate another mom who has walked through the journey I have and been able to share your story and work towards making a difference. My Hannah Jane changed the world as I saw it on Feb. 15, 2010 and I'm a better person for the long haul we have been on together! Thank you for putting yourself out there and trying to make childhood cancer a MUCH needed better known disease. All cancer is evil, but these little babies have nobody except us moms and dads to fight for them. Like I said the night I found out...."babies don't get cancer, they have done nothing wrong!!" So before that day, I had no knowledge about childhood cancer. How quickly it all changed, and now I try to shout it from the roof top as often as I can that these kids need more attention and help! Again.....thank you for being a voice!

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