Introductions, welcome


(Kyle Matthews) #1

This thread is a place to say hello, and a little bit about yourself. Why are you here? How are you connected to neuroblastoma? I’ll start…

My name is Kyle Matthews, and my wife Robyn and I’s first son Ezra was diagnosed with stage 4, high risk neuroblastoma in 2009, at just 400 days old. He went through standard of care then, and we were crushed when he died in 2010, at 800 days old. He lived half his life with cancer, and relapsed the day after his second birthday.

Robyn and I founded Because of Ezra in 2011 to continue Ezra’s fight, and bring hope through patient-affecting neuroblastoma research. We are in our 6th year now, and this has become my full-time gig.

Here’s some pictures of Ezra…




And some info on Because of Ezra…


(Kyle Matthews) #2

(Sam Saffron) #3

Hi There,

My name is Sam Saffron, my son Shalev was diagnosed with high risk stage 3 neuroblastoma in October 2015 (2 days before his sister’s birthday :frowning: )

Shalev was acting a bit lethargic for a few weeks prior, luckily when my wife Tam took him to the GP, he did no fussing around and sent us for a blood test. (he said, I am not sure what is going on, let’s go fishing!). Blood test showed low hemoglobin, he sent us to the hospital, 3 days later we started chemo.

We are undergoing the SIOPEN study, rapid COJEC induction, operation, bone marrow transplant, radiation and immunotherapy.

At the moment we are in the transplant room in day 3!! To date our treatment has gone very well, after the operation scans no longer showed any neuroblastoma. Shalev a very happy child and true trooper, he has gone through so much in the past 4 months and taken it all so bravely.

My day job is writing forum software, in fact, the software for this very forum :slight_smile:


Unituxin - immunoterapy
(Kyle Matthews) #4

Glad you’re here, and thanks for helping make this place happen! That’s one cool shirt on that kid. :slight_smile:


(Dawn Burgess) #5

What a sweet picture!!


(Lisa Riniolo) #6


(Erica Schneider ) #7

My son Aiden was diagnosed with stage 4 high risk neuroblastoma just days before his first birthday. He fought with everything he had and after his stem cell transplant was NED but he contracted a rapidly moving infection after a platelet transfusion and passed away at 17 months old. Now I run a nonprofit called Aiden’s Army and we provide comfort items to children under 2 battling cancer and of course raise awareness for pediatric cancer. With all the amazing people who supported Aiden and I during his battle I now try to do the same for other families going through this.
Aiden Christopher Schneider
6/16/14-12/12/15


(Kyle Matthews) #8

Thanks for coming by @AidensArmy! I’ve followed your page since it started. I hate that we share this loss.

Aiden is our Charley’s middle name. (We spell it Adin though).

Welcome!


(Monica Jean Faucheux) #9

Hello! I’m glad this place exists! I lost my brother to neuroblastoma in the 90s. I’ve been a volunteer with the Neuroblastoma Children’s Cancer Society https://www.facebook.com/groups/109654430257 for quite awhile. I look forward to seeing the positive that can come from this forum.


(Kyle Matthews) #10

Welcome @MonicaFaucheux! I am so sorry you also have had to know this loss. It is a tight-knit community, and I’m glad you’re here.


(Corinne Eiriksson) #11

I’m excited to be here in the early days of this project. My son, Jamshid, was diagnosed with stage 4 NB at 3 years in 2012 in Ontario, Canada. He completed the COG protocol only to relapse just 3 months later in the CNS. That took us to NY and he was in remission until spring 2015 and we just couldn’t shake it no matter what we tried and who we called. After nearly four years he passed in January 2016 right before his 7th birthday. He never gave up wanting to live so now we fight to give more children more time to make their mark and be with their families.


(Kyle Matthews) #12

He looks like one super cool kid. I’ve followed your Facebook page for a while, and truly hate that we share losing a son to neuroblastoma. This loss is a terrible thing to carry.

I’m glad you’re here. Welcome.


#13

Thanks, @KyleMatthews for setting up this forum. I think it’s going to be a great resource for NB families.

My wife and I became a part of this club when our son, Micah, was diagnosed with Stage IV, high risk, MYCN-amplified NB in March 2012 when he was 15 months old. After adding MIBG therapy to his treatment before transplant, he finally cleared midway through immunotherapy.

Unfortunately, he relapsed during the last week of the last cycle, in August 2013. We learned that when he tripped and fractured his left femur, which (unbeknownst to us) had been weakened by a new lesion. He cleared again just a few months later, though now with a deformed femur that caused his left leg to be about an inch shorter than his right. Remission was short-lived, as he relapsed again in January 2014 with two small masses near his bladder. More treatment brought him back to NED status in August 2014, and thankfully he’s stayed there since then.

He’s now doing great. He celebrated turning five in December with a perfectly normal day at school. He’s on an easy maintenance therapy (pembrolizumab) that we hope is helping, but which we at least know isn’t hurting, and he’s in his fifth week of recovery from orthopedic surgery to repair some of the damage to his femur. Hopefully he’ll be cleared to do some walking next week, because he’s full of energy and hasn’t been allowed to walk since surgery, let alone his usual running and jumping.

We live in the San Diego area. Most frontline treatment was at our local hospital, but since relapse most treatment has been at (or at least directed by) Children’s Hospital Los Angeles.


(Barbara johnston) #14

Hi my name is Barbara Johnston. Thank you for doing this! I became familiar with because of Ezra due to a connection in the Tampa area.

Our story.

Sweet Kennedy Thompson (my niece) was Dx at 7mo old with stage 4 intermediate risk Neuroblastoma. Her facebook page is “Hearts for Kennedy”. We are in Indiana where she has been treated at Riley Children’s hospital. She has undergone 9 rounds of chemo, 3 major surgeries and countless MRI’s and MIBG scans (of course general anesthesia for all of it). She had a large tumor in her left calf intertwined with her calf muscle, and a golf ball size one in her abdomen. Chemo did NOT work to shrink the tumor in the leg, but did work on the abdomen tumor. She had both removed along with the calf muscle at just 1yr old. It took abt 4 months after that for her to begin walking, she runs and jumps like any other child now and has been in remission for a little over a year. She still has 2 spots in her left groin and left knee area that show up on the scans. However, these spots have not grown nor gotten brighter, so at this time, with research proving this tactic. They are monitoring her without treamtent. More chemo would add unneeded toxicity to her body when it didn’t work to shrink those 2 spots. They’re hoping that with time those immature cells mature making then benign. (Proven in some studies to be the case).

As I said earlier, Kennedy is my niece however for the last 17 months I have become mommy to her as I, along with my parents are her guardians. She is one of the most amazing little girls and spreads joy all over the place! She is so strong willed, wanting to do everything herself! We are thankful to our Heavenly Father for how well she is doing!


(Dawn Burgess) #15

Hi all!
I’m Dawn. My husband, Kevin, and I have four kids. After months of ongoing, vague issues, our third kiddo, Braeden, was diagnosed with stage lll high risk neuroblastoma and oms ( opsoclonus myoclonus sydrome) the day before his second birthday. Braeden (also known as SuperBub) went through standard COG treatment and all that entailed, complications, and two relapses before dying at home on hospice care on April 18, 2009.
We began SuperBub’s SuperHeroes around that time with the idea of helping the next family, making the journey better for the next family, until there are no more families who have to do this.
We formed great relationships with the hospital staff who cared for us, and continue to work closely with them to support their work any way we can, including our annual gift drive that celebrates Braeden’s birthday. We’re active in funding pediatric cancer research and having the nmtrc headquartered at our favorite hospital is a dream come true for us and for our community.
We love connecting with families who are traveling to Grand Rapids, MI, for treatment, so if that’s you, please don’t hesitate to reach out!


(Mindy Sanders) #16

My son, Colin, was diagnosed in December 2007, at 14 months old, with Stage 2A, Nmyc amplified NB. He completed high risk COG protocol, including 5 rounds chemo, stem cell induction and transplant, radiation, and accutane. We enrolled him in the CH 14.18 study and he received the drug. We’ve had multiple scares, including elevated urine catecholamines and spots on his liver, but he has remained NED. Off treatment February 2009, no relapse. He is currently 9 years old. He has some high frequency hearing loss, but does not require hearing aides. He has been on nightly growth hormone shots, since he was 4. Recently evaluated for learning and psychological effects, but haven’t received results yet.

Since completion of treatment, I have opened a boutique, that donates 100% of profit to beating this monster. I do not take a salary. You can find out more at www.threadsonsignal.com

I have recently discovered this product, called Playtime Bedsheets, that I think is perfect for hospitalized patients. Through my store and website, I am working on getting them donated to patients throughout the U.S. Check them out!


(Kyle Matthews) #17

Welcome to nbforum!!! Glad you’re here.


(Wilnelia ortega) #18

Hi ,My daughter Kayla has been Ned since April 2013 .She was diagnosed at 5 Years old with Stage 4 high risk neuroblastoma


(Sam Saffron) #19

So happy Colin is doing well! Good luck with your results.

Playtime sheets look absolutely awesome, what a great idea :thumbsup:


(Kyle Matthews) #20

I love this! Thank you for being here and sharing that encouragement.