Stacie Schaible with WFLA News Channel 8 in Tampa Bay sat down with the Matthews family to share some of Because of Ezra’s story of battling neuroblastoma.
A week ago, we hung out at All Children’s Hospital in St Pete to see 3 year old Sofia Anderson ring the oncology floor bell. All Children’s does this every time a kid finishes upfront cancer treatment, and Friday marked the end of over a year of treatment for Sofia – she’s cancer free!
One of the main things Because of Ezra is focusing our research funding on is stopping neuroblastoma relapse. Historically, over half of kids who beat neuroblastoma relapse – but through the work of the NMTRC, a 25+ hospital national research consortium we work closely with, we’re changing that story. Sofia’s next step is getting on the DFMO trial we’re helping to fund, which we hope is stopping relapse. Results of the DFMO trials which have already been completed are hugely promising, and we’re thrilled Sofia will be able to get on this trial at the same hospital Ezra was treated at 6 years ago, All Children’s Hospital.
We’ve become good friends with Catalina and Patrick Anderson, Sofia’s parents, and Cat has joined Because of Ezra as the founding member of our Parent Advisory Board. Hanging out with their son Aiden and Sofia is always a good time. Plus, our five year old Charley may have a small crush on Sofia. The Andersons have also helped us launch our Because of _____ program, raising awareness and fundraising Because of Sofia. They’re a force to be reckoned with against neuroblastoma, and we’re so grateful to be beating up this stupid cancer with them.
Brighthouse Networks Enterprise Solutions and Because of Ezra, partnering to cure childhood cancer
Brighthouse Networks Enterprise Solutions (BHNES) chose Because of Ezra as the beneficiary for their 2nd annual Charity Classic golf tournament. We spent the day at the beautiful Saddlebrook Resort in Wesley Chapel, FL. Yesterday, Brighthouse Networks Enterprise Solutions presented Because of Ezra with a check for $90,000! This money goes straight to childhood cancer research. We are so incredibly grateful.
BHNES have been incredible supporters of Because of Ezra – yesterday’s event marked over $170,000 they’ve raised toward beating childhood cancer with us. Between BHNES and their incredible patrons – the many sponsors of the event, we’ve been humbled at the support. BHNES have connected with the research we are doing with the NMTRC, and our cause in a deep way, and know our story and mission well. It is an honor to be partnered with a group who delves into our workings and sees the promise this research is showing.
Over 100 golfers came and the feedback was the same as last year – many golfers said this was one of the best tournaments they’ve ever been to. Sherrin Smyers of Eventrics did a brilliant job of event planning. We owe huge thanks to Craig Cowden, Brian Zelenka, and the entire team at Brighthouse Networks Enterprise Solutions. These are caring professionals.
As I’m writing this, I’m in a conference room with a dozen doctors, parent advocates, and medical professionals discussing one of the most promising trials we’re helping to fund. The results are groundbreaking, and this room is full of people who are truly bringing hope to families who are fighting neuroblastoma today, and those who will tomorrow.
Brighthouse Networks Enterprise Solutions, and all our supporters, are making this possible. We can’t say enough how deeply thankful we are. It takes all of us. Thank you.
We were honored to receive a $17,710.75 check from West Pharmaceuticals last week as the result of their West Without Borders campaign for the Clearwater location in 2015. I regret we didn’t get a photo of the rest of the room above – over 130 employees for months raised funds and awareness, coming together to greatly support or mission of finding and funding a cure for neuroblastoma and other childhood cancers. Amazing!
Earlier this year, we spoke to the team at West, sharing stories of the children being affected by the research Because of Ezra is helping to fund, and sharing our own story. Seeing so many caring and compassionate people was wonderful – the West team takes their commitment to heart. Thanks to Debbie and Holly for making our visits great (and for showing Charley around!).
West Pharmaceuticals over the past 10 years has raised over $2.5m dollars for a variety of charities located around the globe through West without Borders and other campaigns. Because of Ezra is grateful to the West team (especially our sister-in-law, Nicole Matthews, pictured above!) for their effort and support.
On Tuesday we watched a scientist tear up at a dinner party.
Around twenty years ago, Dr Andre Bachmann started working with a drug called DFMO in Hawaii. In the early 2000s, he recognized the fact DFMO inhibited something called ODC could make it a good drug to treat neuroblastoma, and started working on that, in a lab.
In 2008, at a conference in San Diego, the father of a boy with neuroblastoma introduced Dr Bachmann to Dr Giselle Sholler of the NMTRC, who was doing some promising work in clinical neuroblastoma research. Less than two years later, in 2010, the first clinical trial of DFMO opened. In 2012 a Phase II opened.
Because of Ezra is helping to fund this trial, and although results cannot be shared of ongoing clinical trials, they are encouraging. Neuroblastoma has such a high rate of relapse, remission is termed “no evidence of disease” because its thought we just can’t detect residual disease. These DFMO trials are hoping to stop relapse.
For Lily-Mae (in the picture with her mom Jude), who is 15 months cancer free now, there is incredible hope. At dinner in Grand Rapids, Michigan on Tuesday, for the first time, Dr Bachmann watched a patient (Lily-Mae) take a DFMO pill, with a sip of water. That simple sip, 20 years in the making, may be helping children to beat neuroblastoma cancer. The hope is, this pill is stopping Lily-Mae’s cancer from coming back.
This is what we’re doing. #thismatters
This past Tuesday was the first ever Charity Classic by Bright House Networks Enterprise Solutions (BHNES), benefitting Because of Ezra – to the tune of $86,000+. It was a beautiful day at Saddlebrook Resort north of Tampa (check out more photos on the Because of Ezra Facebook page), with a dozen companies sponsoring including BHNES and Platinum Sponsor Cisco. The teams played 18 holes, wrapping up just as the sun was going down, then enjoyed a great reception.
We continue to be amazed at the community around us, and are honored and humbled to partner with Bright House Networks Enterprise Solutions. Their leadership, including Chief Network Office and SVP Craig Cowden, were warm and caring throughout the planning process and the event itself. You could tell this was a personal connection for them – a refreshing realization and one we’re grateful for! From our first phone call with BHNES, we knew they were connected to our mission of curing childhood cancer. Because of Ezra is proud to work toward a cure with BHNES.
Golfers from across the country flew in to participate, and we heard feedback from many of them it was one of the best tournaments they’d been to. BHNES puts on a classy event (big thanks to Brian and Sherrin as well for their long hours and expertise!), from the t-shirts and golf jackets to the Callaway golf bag prizes to the shish-ka-bob stations between holes.
We’re grateful to all the sponsoring companies for their support, and of course to BHNES as well. We left with many more people having heard of Because of Ezra, and over $86,000 which will directly affect children going through cancer treatment today.
From all of us at Because of Ezra, and kids like Lily-Mae,
We received this email the other day, and were moved to tears (good ones!) by it. Thanks, Meshelle, for letting Ezra’s story be a part of yours. It means so much.
“Honestly, I can’t remember how I heard about Ezra’s story, but I can tell you exactly where I was… that is forever engraved into my consciousness. I was at home and about five weeks into my maternity leave after delivering my second child. There was a rare moment of silence where both, our oldest 18 month old and our newest member, were both napping away. I remember opening the website and seeing a blog simply titled ‘Relapse.’ It was August 30, 2010. I often describe that day as the day that Pandora’s box was opened, learning things that I could never forget and finding a depth of sadness that I didn’t know existed. It was the day where I was overcome by a tornado of opposing feelings, one side knew the extreme peace and happiness that comes with bringing a new child into this world, and the other side was overcome with sadness and anger that there was something dangerous that was silently stealing children from their families. I have two children, how did I not know about the world of childhood cancer? I spent all day catching up on Ezra’s story. I allowed your words to pierce the perfect little bubble that I lived in, and I allowed myself to feel sadness for you… soon enough that sadness turned into anger and outrage. It just didn’t make sense to me how so many kids were affected by cancer and how so few people seemed to know about it.
By the time the November 8th blog post ‘Ezra David Matthews‘ was uploaded I had already returned to work. I sat at my desk and cried for you, for the loss of Ezra, and for the fact that the light of the world was diminished a bit more. My first thoughts were more of a series of questions, each one of them beginning with why; why them? (I didn’t know you at all but you all came across as the most loving people on the planet… and it wasn’t like you hadn’t been through enough.), why Ezra?, why not one of my kids? That last question stopped me cold as the stark realization that it could be one of my children washed over me. There is no rhyme or reason to this. It was not enough for me to be angry, to say this sucks and move on with my life… I had to do something. I had a degree already, but it was in Philosophy, and I’m pretty sure that a cure for neuroblastoma couldn’t be found in Aristotle… so I went back to school. I took an extremely rigorous course load that well prepared me to take the MCAT, which I did and now I’m working on changing the world. Medical School isn’t easy, but I can guarantee it’s a cakewalk compared to fighting cancer. My course of study has led me down the clinical research path.
‘Please, be changed because of this. Recognize the flawed world we live in, and work to help the ones you can. Really work. Recognize the hurt in the world, and recognize the grace that gives us a chance to still be beautiful.’
I was changed because of Ezra. It’s hard not to be changed by something of this magnitude. I get up and go to school because I can. My kids are happy and healthy and my husband is extremely supportive. I am alive, and because of that, because of Ezra, I will work my hardest to make a change in the world of pediatric cancer.
P.S. The picture I sent is of me and my youngest Laila… she was the one I was on maternity leave with when I first read your story.”
Sometimes we get communication from people which is so powerful we just have to share it. A woman named Stephanie sent us the picture above, of her stethoscope for nursing school. It has Because of Ezra engraved on it, as well as a cross and her initials. Stephanie said this in her message to us:
I received my stethoscope in the mail today! I wanted to make sure the engraving was something that meant something important to me. I engraved Because of Ezra on it along with a cross and my initials. This organization pushed me even more to pursue my dream of nursing – specifically in pediatric oncology where I hope to end up in the future. Now everyday I go to nursing school, I will always see the reminder of exactly what I’m working for and the little boy that changed my life and made me who I am! #EzraMatthews #800days #weLOVEweHOPEweFIGHT
Stephanie – we are so proud to know Ezra’s story touched you enough to move you to this career in nursing with an emphasis on pediatric oncology. It’s beautiful to see Ezra’s story (and so many of the other kids fighting neuroblastoma) affecting lives and change like this.
Thank you – you’re making a difference.
Tampa runners, joggers, lovers of the pavement, and haters of cancer – come run the Gasparilla Distance Classic with us!
EVERYONE can do this – runs range from a 5K jog, strollers jog, or run… all the way up to a half marathon. We’re doing it a little different this year – check the link below to create your own fundraising page (it’s super easy – just press the big green “Become a Fundraiser” button)!
All funds raised benefit Because of Ezra to support our mission of funding relevant research into a cure for neuroblastoma, the most common form of pediatric cancer. $50 or more raised gets you one of our awesome t-shirts – $750 or more raised gets you a pair of custom Nike running shoes in BoE colors!
Come on out and run with us – we’d love to see the most runners ever this year! If you can’t make it, please share the event so your runner / walker / stroller friends can come out. If you can’t make it, you can also donate toward someone running by pressing the Donate button below.
Sign up at http://stayclassy.org/gasparilla.
(Holy edits, Batman! We’ve changed #nomorenb to something a little more recognizable – #800days. The project is still around, but can be found on 800days.org now! 10/30/12)
Today marked the release of the #nomorenb project – you can check out the site at nomorenb.org.
#nomorenb is a Because of Ezra project dedicated to telling the stories of children with neuroblastoma, and raising funds towards a cure. We’re hoping to share these kids’ stories with the world – there is a real need which not enough people know about. It’s time more people heard about this cancer – we need more attention on the issue, more hands in the battle, and more funds to pay for research and clinical trials.
Neuroblastoma is the most common cancer in infants. Over 600 children a year are diagnosed in the US alone with neuroblastoma – and one will die every 16 hours. Over 70% of children diagnosed are at stage 4 – which has a less than 30% chance of survival. There is currently no cure for relapsed neuroblastoma.
We were so excited to have Caden Shrauger as our first kid featured in the #nomorenb project. The Shraugers are a fun family (check out their team-fc.com site) who are a blast to spend an afternoon with, and are currently living in their camper in the parking lot of the Seattle Children’s Hospital, where Caden has been getting treatment for months. Caden was a happy kid bouncing around, full of high-fives.
A large thanks to the guys in Hey Marseilles as well for coming out and playing for Caden – he even left with some drum sticks!