Ronan's Story

Yesterday I posted a article name "Holidays Ended"
In that Article I mentioned the new song of Taylor Swift - RONAN
Today morning, I received an e-mail ...
Someone asked me to write more about Ronan who diagnosed with "stage 4" neuroblastoma at 12th August 2010. and passed away at 9 May 2011.

OK....here is the Story of Ronan ...

Ronan Sean Thompson

Ronan Sean Thompson was born May 12, 2007. He was the little brother to darling twin boys, Liam and Quinn. From the moment Ronan was born, we knew that he was the missing piece to our family puzzle. He completed us. We were amazed and in awe of this spicy little spirit who took over our world. We spent the next 3 years in total bliss, and were so thankful for this little guy who constantly made us laugh and love harder than we had ever done before. Every single day with Ronan was a blessing. 

Our perfect family changed in August of 2010, during our annual trip to my parents' house in Washington State. It was a trip that we had been taking since the birth of Liam and Quinn, and we always took a family photo on this trip. Every year, we used this photo as our Christmas card. That August, while the boys were posing in my parents' cornfield, happy as can be, I noticed that Ronan's eye looked a little "off" or "lazy." When I mentioned it to other family members, they all said they hadn't noticed.
The following day, Liam, Quinn, Ronan and I returned home to Phoenix, and Daddy greeted us. He noticed Ronan's eye almost immediately. That's when I knew I should schedule an appointment with Ronan's pediatrician.

Ronan's great pediatrician, Dr. Lindsey Campbell, referred us to an ophthalmologist who dismissed my concerns and intuition. She did not believe there was anything wrong with my baby. But I did. Not long after our meeting started, I walked out of the appointment, and frantically started calling other doctors who might be available to see Ronan on short notice. Dr. Brendan Cassidy agreed to see Ronan the next day. At first glance at Ronan's eye, which was now bulging out of the socket, Dr. Cassidy immediately knew something was seriously wrong. Dr. Cassidy sent us directly to Phoenix Children's Hospital for an MRI. The MRI showed a small mass above the left orbit of Ronan's eye. The following day, Ronan had a CT scan done, and they found a mass in Ronan's abdomen.

It was on this day, the 12th day of August, 2010, that Ronan, my son, my baby, my love, was diagnosed with Stage IV Neuroblastoma.

Ronan's orbital tumor was successfully removed at Phoenix Children's Hospital on August 13, 2010, where he also received 5 rounds cycles of chemo. The tumor in his abdomen was almost completely removed by surgeons at Sloan-Kettering in New York City. Ronan responded well to the first 5 rounds of chemo, and it was only after the MIBG scan after Round 5, that we decided to forgo the standard COG protocol, the standard treatment for neuroblastoma. We moved Ronan to Sloan Kettering to continue treatment under the care of Dr. Kushner. We did this because Ronan's scans were much improved, but he still had a lot of MIBG activity. We felt Sloan Kettering was where we needed to be. Ronan underwent radiation and ICE at Sloan. A few weeks later, Ronan's disease took a turn for the worse. His body did not respond to the chemo, and his disease rapidly progressed. We returned to Phoenix with heavy hearts, but refused to give up.

We took Ronan to meet with Dr. Mosse at CHOP in Philadelphia. It was at CHOP that we were told that Ronan could not undergo MIBG therapy. We were told to take Ronan home, and enjoy the rest of the time we had with him.

We searched frantically for something, anything else that would help our baby. We were told to contact Dr. Giselle Sholler and she agreed to accept Ronan in her Nifurtimox trial. But Ronan's little body gave out before we could get to San Diego for the treatment.

Ronan's battle with Neuroblastoma ended on May 9, 2011, but his fight will go on. Ronan continues to inspire us in the way he lived his life full of passion, strength, and courage. He will live forever in our hearts and minds as the most beautiful little boy to ever have touched the earth. We, as a family, are determined to carry on his name, and find a cure for this horrible disease.


Written by Maya Thompson (Ronan's Mother)
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Ronan & his Mom

The Ronan Thompson Foundation is a non-profit 501(c)3 organization dedicated to finding a cure for neuroblastoma, a form of childhood cancer. We are currently fundraising to create a world-class neuroblastoma research and care center dedicated to funding both traditional and non-traditional treatments to reduce the number of children affected by this disease and increase survival rates.

Rationale

Pediatric cancer is the number one disease killer of children. Neuroblastoma is the fifth most common cancer in children, and tragically, less than half of these patients are cured. Neuroblastoma is the deadliest form of pediatric cancer. The Ronan Thompson Foundation believes that this fact is not acceptable. Children deserve betters odds and better outcomes. Children deserve a chance to live. They deserve to have the chance to grow up - something that so many of us take for granted.

Guiding Principles

The mission of The Ronan Thompson Foundation is to cure children with neuroblastoma. The Foundation raises funds for research that will find new and innovative ways to treat neuroblastoma, and ultimately, find a cure for this disease. The Foundation is also committed to raising awareness and providing education. With awareness comes funding, with funding comes answers, with answers, come a cure.

Personal Mission

The Thompson family lost Ronan Sean Thompson, the love of all their lives, to this disease. Ronan lived life with courage, laughter and love. He fought neuroblastoma with everything he had. Ronan's mama, Maya, made Ronan a promise. She promised Ronan that she would fight until people start listening, until survival rates improve, and until a cure is found. This is not an easy feat, and we need your help. Ronan did not deserve to die. No child does. In this day and age, the lack of awareness and funding for pediatric cancer is unacceptable.

Every child deserves a chance. Every child deserves to grow up. Every child deserves to live a long and beautiful life. Cancer robbed Ronan. We will be a voice for Ronan, a voice for every single child who is fighting this battle.

Thank you for your love and support. Thank you for believing that a love this strong will change the face of this disease. Thank you for wanting to be a part of our mission.

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Ronan by Taylor Swift Lyrics

I remember your bare feet

Down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs
I love you to the moon and back

I remember your blue eyes
Looking into mine
Like we had our own secret club
I remember your dancing before bedtime
Then jumping on me waking me up

I can still feel you hold my hand
Little man
And even in the moment I knew
You fought it hard like an army guard
Remember I, leaned in and whispered to you

Come on baby with me
We're gonna fly away from here
You were my best four years

I remember the drive home
When the blind hope
Turned to crying and screaming why
Flowers pile up in the worst way
No one knows what to say
About a beautiful boy who died
And its about to be halloween
You could be anything
You wanted if you were still here

I remember the last day
When I kissed your face
And I whispered in your ear

Come on baby with me
We're gonna fly away from here
Out of this curtained room
And this hospital grey will just disappear

Come on baby with me
We're gonna fly away from here
You were my best four years

What if I'm standing in your closet
Trying to talk to you?
And what if I kept your hand-me-downs
You won't grow in to?
And what if I really thought some miracle
Would see us through?
And what if the miracle was even getting
One moment with you?

Come on baby with me
We're gonna fly away from here

Come on baby with me
We're gonna fly away from here
You were my best four years

I remember you bare feet
Down the hallway
I love you to the moon and
Back...
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Taylor’s song was based on the blog postings of Maya Thompson, 33, who began writing in August 2010 when little Ronan was diagnosed with neuroblastoma. The lyrics are completely from Maya’s blog entries, written during the nine months that Ronan fought the illness before passing away in May 2011, just three days before his fourth birthday. 

Maya wrote about the experience with Taylor on her blog, Rockstar Ronan: “‘My calmness soon turned to complete and utter frozen shock when these words came out of her mouth. ‘I wrote a song for Ronan.’ ‘The tears started pouring down my cheeks as soon as I heard her say those words. But her words didn’t stop there. Not only did she write a song for you, but she wanted to know if it would be alright to perform it on the nationally televised show.”

Maya didn’t get to hear Taylor’s song until the world heard it, live on television. In her blog, she wrote, “It was pretty emotional,” adding that hearing her own words come to life was “kind of like reliving it again, but it’s something I’ll probably always relive.”

“Ronan” shot to number one on iTunes after Taylor performed. All proceeds from the song are going to cancer-related charities.

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Resources:
http://www.theronanthompsonfoundation.com/
http://hollywoodlife.com/2012/09/11/taylor-swift-cancer-song-ronan-thompson-blog-lyrics-rockstar-ronan/