Night in for Neuroblastoma

Enjoy a night in with family and friends while honoring children fighting neuroblastoma and raising money for new, less toxic treatments. Have a cookout.

Instead of hiring a babysitter, buying a new outfit, spending money on auction items, and trying to figure out how to come up with the money for another high-price party, stay home, have a Night in for Neuroblastoma and help raise money to fund new, less toxic treatments for children fighting cancer. How to host a “night in”
Step one: Pick a date. This event takes place throughout the entire month

of September, which is Childhood Cancer Awareness Month, so you can choose whatever night fits in your schedule. Step two: Determine your guest list. No need to spend money on invitations, use an electronic invite, text invite or facebook. Step Three: Think about what kind of “night in” you want to host. If you have kids, include them! Make it a pizza night; or a casual affair where everyone brings a dish to share. Enjoy a grown-up night, drink some beer or wine and make some of those new appetizers you have been looking for a reason to test. The idea of this event is to make it fun and easy. You get to decide how to plan your “night in.”

Step four: Ask that everyone who attends your gathering make a donation to Band of Parents, if they are able. Encourage them to give whatever they can. NO amount is too small. Cash, coins, checks are great! If your guests wish to donate with a credit card they can visit http://www.bandofparents.org/donate.html For those who can’t attend a “night in” donations can still be made. Mail checks payable to Band of Parents to Ashle Burnett, 1419 E. Windmill Rd., Derby, KS 67037 or donate online. Every dollar raised benefits the Band of Parents to help fund new, less toxic treatments for kids fighting Neuroblastoma at Memorial Sloan Kettering Cancer Center in New York City. Step five: Have fun! But please, during your “night in” take a few minutes and educate your guests on what the night is all about – the kids whose lives are consumed by doctor visits, tubies, hospital stays, shots, needles, hair loss, chemotherapy and sickness. Don’t just focus on the sad, difficult stuff, educate them that these kids are the truest super heros who take most days with a smile. They are kids just like yours who like bubbles and video games and sports. For those hosting events, an informational handout is available. Simply email [email protected] to request one. Step six: Take pictures and post them to our page

Step seven: After your event, send a quick email to [email protected] and let her know how many people attended your “night in” and if known, how much money was raised. Dinner hosts can mail money raised directly to the Band of Parents or get it to Ashle and she will turn it in. Step eight: Spread the word and encourage others to host their own “night in”

Why is this a “night in”? Two reasons 1) Children in treatment for cancer often suffer from low blood counts forcing them to stay home while their friends get to go out, play sports and have fun. A night in honors those children who can’t leave for fear of potential fatal infections 2) Many of the children in treatment for Neuroblastoma have to travel thousands of miles from home to receive treatment. When they return home, they are often just happy to be at home. What is Band of Parents? Band of Parents is a member based organization with the goal of funding new therapies for Neuroblastoma, a rare and deadly childhood cancer. The mission of the Band of Parents is to seek projects that have already been examined in the lab and are in need of assistance to rapidly move into a patient population within 12-24 months of funding. The organizations goal is simple – to help and support families fighting Neuroblastoma and to raise more funds for research, so that ALL children with neuroblastoma can survive and thrive. To learn more visit www.bandofparents.org

What is Neuroblastoma? Neuroblastoma it is the most common cancer in children under 2 years of age and is diagnosed in about 650 children in the U.S. each year. Arising in the developing nerves of a child, Neuroblastoma often appears as a tumor in the chest or abdomen. It is a cancer that attacks the sympathetic nervous system and in 2/3rds of cases it goes undiagnosed until it has spread (metastasized) to other parts of the body. Once neuroblastoma spreads, it is often considered High Risk disease which has a 5 year survival rate of just 30 percent. The cause of neuroblastoma is unknown and there is no known cure for relapsed Neuroblastoma. Childhood cancer facts (from www.bandofparents.org):
- One in 330 children will develop cancer by age 20.
- About 1,320 children are expected to die from cancer in 2012.
- Each school day, 62 children are diagnosed with cancer. (based on 180 day year).
- Each child in the U.S. diagnosed with cancer receives approximately one sixth of the federal research support allocated to each patient afflicted with AIDS.
- The National Cancer Institute's funded research portfolio in 2010 was $3 billion. Of that, breast cancer received 21%, prostate cancer received 10% and ALL 12 major groups of pediatric cancers combined received less than 3%.
- Cancer accounts for the greatest number of deaths of children in the U.S. and kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

09/26/2015

It's tomorrow!! Come see us 5-7pm at Shine Salon.

Just a reminder to join us for a fundraiser to benefit Band of Parents!
Tripp has directly benefitted from their efforts Of supporting trials to fight Neuroblastoma. Come be a part of the fight. Open House 5-7.

09/21/2015

09/12/2015

Wearing our HOPE shirts in honor of Tripp.

09/11/2015

Mark your calendars for a

Night In at Shine Salon.

All proceeds from the night benefit Band of Parents.

September 27, 5-7pm Open House
1725 East Douglas, Wichita KS

08/17/2015

September is fast approaching. Have you started planning your Night In event? Check out the About tab to learn how easy it is to host one in your home. All money raised benefits Band of Parents www.bandofparents.org

06/27/2015

It's summer! More than likely many of you are getting together with friends and soaking up some sun. Whether it's a pool party, backyard BBQ or just a fun night hanging out, please consider changing these casual gatherings with friends into a Night in for Neuroblastoma. It's so easy! All you do is what you were doing anyway, but ask your friends to donate however much money they are able. All money raised from these year-round events benefit Band of Parents. This parent-run organization raises money that directly funds new treatment options for our kids. Too many of our young friends are dying. Too many are relapsing and running out of options. Please consider doing something so simple that has a far-reaching benefit. Message us if you are interested in hosting an event or have any questions.

02/16/2015

Tripp and his friend Ainsley looking at the cards her friends made for him while he was in New York

01/21/2015

If you are new to this page, thank you for joining us. We are glad you are here. This page was inspired by Tripp, a 7 year old spunky, funny and tenderhearted little boy who has Neuroblastoma. In the last month has relapsed for the third time. Please feel free to get regular updates at Carepage.com, StrattonTwins. Tripp continues to fight and he needs your continued prayers.

Here is his mom's last post.

Posted Jan 18, 2015 1:39pm
Tripp finished chemo Saturday afternoon and I officially unhooked the remaining fluids and meds this afternoon. For the first time in 10 days he is tubey free. He tolerated the treatment pretty well though felt quite miserable much of Friday and Saturday. Today he is just fatigued on not wanting to get out of bed much. Now we wait and monitor his drop in counts. If he develops a fever while counts are low he will go back inpatient until his immunity rebuilds. We also have to keep a very close on his platelets as this is his first ever round of chemo while dealing with ITP. Thankfully two of the top experts in this field are at our disposal here in NYC.
What comes next is still unclear. Thank you for the fervent prayers. Now we pray he is able to avoid fever and infection, that he will regain strength and weight (he has lost 3.5 pounds), that the team will determine the best, most effective and least toxic treatment plan and that this disease will stay away from Tripp's body forever. As hard as this is for us, we are still so blessed Tripp remains on this Earth and able to fight.

01/10/2015

From Tripp's Carepage:

More News, Not so Good:

After speaking with the surgeon, the rest of the story became clearer. Though the main tumor was removed, and the intraoperative radiation was performed, the surgeon said the disease within Tripp's body is very aggressive and will require full systemic treatment. What does this mean? Chemotherapy, which will likely begin within the next week while he recovers inpatient from surgery, as well as possible additional external beam radiation. The exact plan is not yet known, but this is definitely not the news we were hoping to hear. This is somewhat like starting over from initial diagnosis 4 1/2 years ago, though on a little body that has endured far more.

I'm devastated, but not losing hope. God lead us to scanning more than two weeks sooner than we were supposed to. Had we waited, this outcome could have been far worse. Tripp is not the first, nor the last child to have to face an additional surgery and another uphill battle. But Tripp, as you all know, is a very special kid. His love for life will get him through this and his spirit will get me through. Though spending our days in the hospital is not ideal, we will make it an adventure and know that he will come through this just as he has in previous years.

I will never understand why he and these other children have to suffer and endure this. My heart is broken.

01/09/2015

This is the latest update from Tripp's Carepage:
The Best Outcome!
The surgeon was able to get the entire tumor! The intraoperative radiation was able to be performed. What an incredible blessing! Thank you for all the prayers and positive thoughts. When I told him him last night about everyone wearing RED for him He told me last night it made him happy! I'll update more later but for now major prayers if Thanksgiving.

Ashle has seen the pictures today on FB and she can't wait to show Tripp all the RED!!!! Thank you all for your prayers and positive thoughts.