Ben Strong A retinoblastoma journey
Donation protected
On June 4th, our sweet, brave, baby Ben Ryan was diagnosed with a rare form of cancer, retinoblastoma at 7.5 weeks. In less than a week after diagnosis he has now started his journey of treatment, to become cancer free.
Retinoblastoma is an eye cancer that begins in the retina — the sensitive lining on the inside of your eye. Retinoblastoma most commonly affects children up until 5 years of age. Retinoblastoma is very rare, only occurring in 200-300 children in the US each year. In Ben's case, he was likely born with this.
Since June Joe, Cheryl and big brotherJack have done everything possible to start this fight. Ben has had 4 rounds of chemo at the University of Iowa hospital, as they went in for the 5th round at UIHC they were told the chemo was not working.
After the initial wave of going through every emotion possible in the span of 15 mins... Shock, sadness, worry, fear, anger, you then hunker down, ask a million questions, come to terms with reality, and go into action mode…
Fast forwarding, this means options are IAC (inter-arterial chemotherapy...chemo administered directly to the eye via an artery, which would be a focalized higher dose of chemo to that area) or removal, because the tumors are no longer responding to current systemic chemo treatments. The good news, the left eye still looks OK! And that's GREAT.
They have decided to go to NYC, a world renowned hospital known for their IAC procedure and determine their confidence level that this procedure would be a viable option to save Ben's eye. Although this is a rare cancer caused by a gene mutation, this procedure itself is very common and successful among retinoblastoma patients, once they are big enough. This cancer... ANY cancer, proves time and time again... it's relentless.
They headed to Sloan Kettering in NYC on Monday 10/3/16, to meet with an enlarged medical team. Thankfully our amazing oncologist in Iowa City has been consulting with them for the duration of Ben's diagnosis so they'll be familiar with him.
When they say it takes a village to raise a child, we have certainly felt the truth of that!! So thankful for our family and friends who continuously and generously drop anything, rearrange schedules, bring meals, send words of encouragement, drive/fly the distance to provide support.
And at the end of the day, Ben's smiles, cuddles and shout outs let us know he's not phased by any of this, he's got it in him to be a little big fighter!
Thanks again for all your thoughts and support!
"Although this wave is stringing us along, just know you're not alone, we're gonna make this place your home!"
We will be using this page to help support the Ryan family and all the expenses that going back and forth to New York will entail….So far they are hearing promising news in NYC but I will wait to hear from Cheryl on the Facebook page for an update…
I will also keep this page up to date. Thanks for all your help. "
"When someone has cancer, the whole family and everyone that loves them does too." <3 <3 (Terri Clark)
Thanks for your support -GO GOLD!
Retinoblastoma is an eye cancer that begins in the retina — the sensitive lining on the inside of your eye. Retinoblastoma most commonly affects children up until 5 years of age. Retinoblastoma is very rare, only occurring in 200-300 children in the US each year. In Ben's case, he was likely born with this.
Since June Joe, Cheryl and big brotherJack have done everything possible to start this fight. Ben has had 4 rounds of chemo at the University of Iowa hospital, as they went in for the 5th round at UIHC they were told the chemo was not working.
After the initial wave of going through every emotion possible in the span of 15 mins... Shock, sadness, worry, fear, anger, you then hunker down, ask a million questions, come to terms with reality, and go into action mode…
Fast forwarding, this means options are IAC (inter-arterial chemotherapy...chemo administered directly to the eye via an artery, which would be a focalized higher dose of chemo to that area) or removal, because the tumors are no longer responding to current systemic chemo treatments. The good news, the left eye still looks OK! And that's GREAT.
They have decided to go to NYC, a world renowned hospital known for their IAC procedure and determine their confidence level that this procedure would be a viable option to save Ben's eye. Although this is a rare cancer caused by a gene mutation, this procedure itself is very common and successful among retinoblastoma patients, once they are big enough. This cancer... ANY cancer, proves time and time again... it's relentless.
They headed to Sloan Kettering in NYC on Monday 10/3/16, to meet with an enlarged medical team. Thankfully our amazing oncologist in Iowa City has been consulting with them for the duration of Ben's diagnosis so they'll be familiar with him.
When they say it takes a village to raise a child, we have certainly felt the truth of that!! So thankful for our family and friends who continuously and generously drop anything, rearrange schedules, bring meals, send words of encouragement, drive/fly the distance to provide support.
And at the end of the day, Ben's smiles, cuddles and shout outs let us know he's not phased by any of this, he's got it in him to be a little big fighter!
Thanks again for all your thoughts and support!
"Although this wave is stringing us along, just know you're not alone, we're gonna make this place your home!"
We will be using this page to help support the Ryan family and all the expenses that going back and forth to New York will entail….So far they are hearing promising news in NYC but I will wait to hear from Cheryl on the Facebook page for an update…
I will also keep this page up to date. Thanks for all your help. "
"When someone has cancer, the whole family and everyone that loves them does too." <3 <3 (Terri Clark)
Thanks for your support -GO GOLD!
Organizer and beneficiary
Lindsay Ryan Gardner
Organizer
Bettendorf, IA
Joe Ryan
Beneficiary