My brother. My hero.

This guest blog post by Kelli Very Wright

Ben and KelliWhen you hear childhood cancer, you think babies. toddlers. middle school.  I hear childhood cancer and think teenager. college. brother.

I came home for Thanksgiving break in Fall 2004, and my mom told me my brother Mike, a 17 year old freshman in college, had osteosarcoma, a childhood cancer.  I didn’t know what that meant at the time.  Didn’t know the words mediport, methotrexate or dilaudid.  Didn’t know he’d go through 18 rounds of chemo, two thoracotomies, and an implant surgery (from his femur to shin, including his knee), all before he turned 19.

It’s an interesting place to be, the sibling of a “child” with cancer.  All attention, all the time is no longer on you. Not only from your parents, but from family, friends, neighbors, everyone. If you have a slight fever, it means taking it easy and resting.  If your sibling with cancer has a slight fever, off to the hospital they go, with the possibility of being admitted and not coming home for a few days.  Your life changes.

I consider myself lucky – I was 20 years old and in college when Mike was in treatment.  My parents were able to devote all their time and energy on him.  Mike came first, and I wouldn’t have had it any other way.  I did stay in the hospitals during/after his surgeries, had to wear a mask at home so I didn’t sneeze and share germs and I definitely played shofer to and from the hospital.  But nothing compared to what my brother endured.  He showed me courage and strength I’d have to dig deep to find in myself.

I am thankful every day that Mike is now eight years cancer free.  He graduated from college [only one year late]; became a paramedic [his dream]; and continues to be a volunteer firefighter.  And just recently, Mike became a member of the New Jersey Disaster Medical Assistance Team (DMAT) – medical personnel designed to provide medical care during a disaster or other event [this is not an easy accomplishment].

The battle doesn’t end when treatment does.  There will forever be check ups, long-term effects and tearful times when friends met along the way don’t make it.  So every year we have a party to celebrate life; family and friends from all over the East Coast come to raise a glass to Mike.

Some people never meet their hero, my brother is mine.

At-Home Drug Errors Common for Kids With Cancer, Research Shows

Study author says parents need more support, better awareness

FRIDAY, May 3 (HealthDay News) — Children with cancer often have complex medication regimens — sometimes as many as 20 drugs a day — that they take at home, and mistakes are common, a new study finds.

Errors often occur when parents don’t understand how to give the drugs, but mislabeled bottles and wrong prescriptions are also to blame, researchers say.

“Parents of children with cancer make many mistakes giving their children critical medicines, including chemotherapy at home,” said lead researcher Dr. Kathleen Walsh, of the departments of pediatrics and medicine at the University of Massachusetts School of Medicine in Worcester.

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Helping Parents Understand Port Access

Many tests and procedures are done to during cancer treatment to administer medication and see exactly where cancer cells are located inside the body. The following video demonstrates two types of port access in patients receiving chemotherapy.

This video was designed to educate parents and caregivers by showing actual patients being accessed for treatment. Our intent with this video is to help you, and your child if you chose to show it to them, understand what will happen when your child has this procedure.

Click here to learn more about central lines and to view our port access demonstration.

Top Ten Fundraiser Ideas

Looking for a fun way to raise funds for CureSearch? Below are some unique fundraising ideas that you can use to help CureSearch fund innovative and targeted research.

1.Bake Sales: bake sales are an easy way to raise money for your CureSearch Walk team. Gather up your team mates and have everyone bring a baked good!

2.Coin Collection: create some healthy competition between classrooms at your child’s school. Whoever collects the most change wins a fun prize for their whole class!

3.Food fights: always wanted to have a food fight, but afraid you were going to get in trouble? Pick an outdoor spot, gather your friends (and some towels) for a food fight to benefit your CureSearch Walk team! Ask participants to make a donation to CureSearch to join in on the fun. Everyone will have fun and raise funds for children’s cancer research.

4.Corporate Sponsors: do you know a business owner, local vendor, or corporation in the local community who would like to get more involved in the CureSearch Walk and gain community exposure? Ask them to sponsor your team or Walk! When they do, they will get their logo on your t-shirt or on your local CureSearch Walk website.

5.Big game/ Show/ Event night: show the super bowl, favorite college or professional team game, Olympics, Reality Show Finale, etc. Ask your friends to donate $20 to attend. You can then also play games like guess who will win, score the most points, or who will get kicked off and charge a participation fee for each entry.

6.House Warming, Bridal Shower, or Birthday: throw yourself or a friend a party and ask for donations to CureSearch in lieu of gifts.

7.Movie Night: pick up the hottest new release and have friends over to watch. You could even rent a projector to show it on a wall or outdoors during the summer. Admission is a donation to CureSearch!

8.Dinner/ Cocktail/ Wine and Cheese Party: throw a fancy party and charge guests a fee for attending. Try to have items donated or plan on a budget so you can donate as much possible to CureSearch!

9.Game Night:  this can be anything from basketball to Monopoly to PS3 to poker.  Charge an entrance fee and give 30-50% to the winner and the rest to CureSearch.

10.Zumba-thon: be healthy while you raise funds for CureSearch! Have participants ask their friends and family to make pledges for every hour they zumba.

Nurse Helps Educate and Heal Her Patients

valerierigbyValerie Rigby, RN has been in the nursing field for more than 22 years. She started as a nurse in England, and eventually moved to the United States. While in England, Val helped develop one of the first pain and palliative care programs aimed at helping families learn more about a diagnosis and treatment plan, as well as arranging home care for them.

After Valerie and her family moved to the U.S., she began working at the Nemours/Alfred I. duPOnt Hospital for Children in Wilmington, Delaware and fell in love with pediatric oncology nursing. She loves getting to know her patients and helping them through the difficulties of dealing with cancer. Val believes that continued education is essential to advancing care for children with cancer, and often refers her patients and their families to the CureSearch website for educational resources. She even helped write a booklet about radiotherapy so that children undergoing radiation treatment and their parents know what to expect.

Throughout her years as a nurse, Valerie has seen many advances, but believes that education is the greatest tool that she can provide to her patients and their families. She believes that when a medical team can offer this, the families are better equipped to deal with a diagnosis and treatment.

To learn more about the educational resources that CureSearch provides, visit http://www.curesearch.org/medical-information/.

FDA Drug Approval Process

The Food and Drug Administration drug approval process can often be confusing. New drugs go through multiple steps, including clinical trials, before they reach a patient.  In this infographic, the drug approval process is explained.

FDA Approval Process

To see the full infographic, visit www.fda.gov.

Accelerate the Search: Find the Cure

At CureSearch, we are excited to announce our funding portfolio for 2013! Over the last 25 years, CureSearch has been a leader in funding children’s cancer research and this year we are launching a new funding platform that will help accelerate the search for cures.

CureSearch will to continue to support clinical trials through the Clinical Trial Advancement Awards, a program that distributes funds to hospitals in the United States enrolling patients in Phase I, Phase II, and Phase III therapeutic clinical trials. At CureSearch we believe that clinical trials are the key to making a difference for children with cancer, today.

Not only will we continue to support clinical trials and provide educational resources, we will for the first time invest significant dollars into preclinical and clinical research aimed at accelerating the cure for children at the greatest risk of losing their battle with cancer.

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