Our Little Joey
Joey has been diagnosed with an aggressive form of cancer - neuroblastoma. This page will detail Joey's health progress so we can together, hold Joey's hand through the long journey ahead to get him well and back on the ski slopes and in the farm fields.
ENGRAFTMENT DAY #1
TODAY, February 5, 2016 is Joey's 17th day into his first of two stem cell transplants. This day is special becuase his daily blood labs this morning showed a giant leap of cell activity in Joey's body. Over the last two weeks the oncology and stem cell teams have infused Joey with intense chemotherapy...chemotherapy that has stripped his body of cells and left behind potent and intense side effects. Joey is still managing the side effects - he has mucousitis throughout his body, his skin is irritated and peeling, he is nauseas and feels extrememly tired. But although Joey is tired in appearance his last three blood draws have shown signifiant cell activity and inside his body is working in overdrive to make happy, new, cancer-free cells.
I was writting in my journal the other night, and I was writting about how the doctors keep commenting on how Joey is "the perfect patient." He is so agreeable to all the medicines he has to take, line cleanings, lotions, poking and prodding over every inch of his body... Don't get me wrong, when he throws up his NG tube, he cries because he doesn't want them to put it back, it goes thru his nose and into his belly (no pain mess, no roundabout less-invasive way) and he sits there with me holding his hand and does it. It's uncomfortable to a degree you or I could never know...but he does it. On bad weeks, he has to do it several times a week. He gets out of bed every day. Every day. That's hard. But he does it and he plays and he jut keeps going because he doesn't give himself any other choice, that's his only choice, to get out of bed and play and try to eat ice cream and count the days to see his sister. Our strong farm boy is so determined and so cared for and so loved...I know he can't wait to play back on his farm. He talks about going to school all the time, he will get there. With your continued prayers and support we will all work to get him back to the play he really wants! Thank you for your continued support.
I was writting in my journal the other night, and I was writting about how the doctors keep commenting on how Joey is "the perfect patient." He is so agreeable to all the medicines he has to take, line cleanings, lotions, poking and prodding over every inch of his body... Don't get me wrong, when he throws up his NG tube, he cries because he doesn't want them to put it back, it goes thru his nose and into his belly (no pain mess, no roundabout less-invasive way) and he sits there with me holding his hand and does it. It's uncomfortable to a degree you or I could never know...but he does it. On bad weeks, he has to do it several times a week. He gets out of bed every day. Every day. That's hard. But he does it and he plays and he jut keeps going because he doesn't give himself any other choice, that's his only choice, to get out of bed and play and try to eat ice cream and count the days to see his sister. Our strong farm boy is so determined and so cared for and so loved...I know he can't wait to play back on his farm. He talks about going to school all the time, he will get there. With your continued prayers and support we will all work to get him back to the play he really wants! Thank you for your continued support.
HAPPY BIRTHDAY JOEY!
"Joey turns 4" December 11, 2015
Well, Joey's 4th birthday was on the 10th floor of Boston Children's Hospital where he was recovering from his tumor resection surgery. The day was made special by a visit from his best friend, Autumn and a few of his cousins. Autumn's class surprised joey with birthday cards from all the kids in her kindergarten class -- sooooo sweet! And Joey got out of bed to play a few rounds of air hockey! We are yet to have Joey's official birthday party - but when his counts are up and he is able to be in public places we are ALL going to the New England Aquarium where Joey can see a shark - his real birthday wish!
Joey's birthday was made special with so many cards and well wishes from friends and family near and far, especially our friends in Maine :)
Joey's birthday was made special with so many cards and well wishes from friends and family near and far, especially our friends in Maine :)
Joey's Health Update "Holiday Edition" December 6, 2015
JImmy Fund WInter Wonderland
Our family was blessed with happy holiday moments - one special moment was attending the Jimmy Fund Winter Wonderland celebration.
The celebration was the day before Joey's big tumor resection surgery, so we were not sure we would be able to attend, but, Joeys world famous surgeon, Doctor Weldon agreeed to be one of Santa's helpful elves and encouraged us to bring him! Autumn, Joey, Steph, Joe, Grammy, Papa, & Papa Steve all attended. The day was magical - some of the kids' favorite activities were meeting Santa, holding bunnies and baby chicks from the petting zoo, riding in the outdoor choo choo trail to the Dunkin Donuts hot cocoa station, and the many many arts and crafts that many of you enjoyed as Christmas presents from Autumn!
Here is a Jimmy Fund post that mentions our family, and our warrior Joey.
http://blog.jimmyfund.org/2015/12/jimmy-fund-clinic-winter-festival-brings-cheer-to-pediatric-patient-before-surgery/
Jimmy Fund Clinic Winter Festival brings cheer to pediatric cancer patient before surgery
The Jimmy FundDecember 23, 2015Patient stories
Joseph and Stephanie O’Neil with their children Autumn and Joey, and Joey’s Doctor, Chris Weldon
“This is their magic time,” said Lisa Scherber, director of Patient and Family Programs at Dana-Farber’s Jimmy Fund Clinic.
That magic was everywhere you looked at the 24th annual Jimmy Fund Clinic Winter Festival. For patients and their families, the Festival is an opportunity to take a break from their daily challenges and celebrate the holiday season. The December 6 event, held at the Newton Marriot, welcomed over 800 patients and families to enjoy a day of crafts, games, train rides, and the highly anticipated arrival of Santa Claus and his elves.
For 3-year-old pediatric patient Joey and his family, the party was more than they could have ever expected. His parents, Stephanie and Joseph wanted to bring their family to the Festival, but given Joey’s scheduled surgery the next day, they had reservations about attending such a large event. However, knowing they would have the love and support of the other Jimmy Fund Clinic families, they decided to stop in.
Upon Santa’s arrival, the family quickly realized they recognized one of the elves—it was Dr. Chris Weldon, who would be performing Joey’s surgery early the next morning.
“When Joey and his sister Autumn went onstage to meet Santa, Dr. Weldon was dancing, laughing and taking pictures with us. He was creating a memory for our family that I will never forget and always be grateful for,” said Stephanie. “He was dressed in a complete elf costume with striped stockings, jiggle bell hat and all! He made a point to find our little Joey right away and we shared some laughs and pictures.”
The family ended up staying for the whole event. Stephanie says along with making fun memories, sharing the afternoon with Dr. Weldon prepared Joey for his procedure the next day.
“When Joey saw Dr. Weldon the next morning, he associated him with the elf he partied with the day before” she said. “What more could a mom ask for as her 3-year-old heads into major surgery— my son being happy to go with the elf into the O.R.!”
Dr. Weldon was not the only familiar face. Many Dana-Farber staff members attended the event, embracing the holiday season fun with patients and families: decorating cookies, making holiday ornaments, and dancing around in festive costume.
“The whole day was filled with laughter and smiles,” said Lisa, who, along with the Pan-Mass Challenge Team ROAR-Reindeers on a Ride, organizes the annual event. “We really try to bring special moments to the kids and families, a chance to take a break and have some holiday cheer and magic– this is their magic time.”
Our family was blessed with happy holiday moments - one special moment was attending the Jimmy Fund Winter Wonderland celebration.
The celebration was the day before Joey's big tumor resection surgery, so we were not sure we would be able to attend, but, Joeys world famous surgeon, Doctor Weldon agreeed to be one of Santa's helpful elves and encouraged us to bring him! Autumn, Joey, Steph, Joe, Grammy, Papa, & Papa Steve all attended. The day was magical - some of the kids' favorite activities were meeting Santa, holding bunnies and baby chicks from the petting zoo, riding in the outdoor choo choo trail to the Dunkin Donuts hot cocoa station, and the many many arts and crafts that many of you enjoyed as Christmas presents from Autumn!
Here is a Jimmy Fund post that mentions our family, and our warrior Joey.
http://blog.jimmyfund.org/2015/12/jimmy-fund-clinic-winter-festival-brings-cheer-to-pediatric-patient-before-surgery/
Jimmy Fund Clinic Winter Festival brings cheer to pediatric cancer patient before surgery
The Jimmy FundDecember 23, 2015Patient stories
Joseph and Stephanie O’Neil with their children Autumn and Joey, and Joey’s Doctor, Chris Weldon
“This is their magic time,” said Lisa Scherber, director of Patient and Family Programs at Dana-Farber’s Jimmy Fund Clinic.
That magic was everywhere you looked at the 24th annual Jimmy Fund Clinic Winter Festival. For patients and their families, the Festival is an opportunity to take a break from their daily challenges and celebrate the holiday season. The December 6 event, held at the Newton Marriot, welcomed over 800 patients and families to enjoy a day of crafts, games, train rides, and the highly anticipated arrival of Santa Claus and his elves.
For 3-year-old pediatric patient Joey and his family, the party was more than they could have ever expected. His parents, Stephanie and Joseph wanted to bring their family to the Festival, but given Joey’s scheduled surgery the next day, they had reservations about attending such a large event. However, knowing they would have the love and support of the other Jimmy Fund Clinic families, they decided to stop in.
Upon Santa’s arrival, the family quickly realized they recognized one of the elves—it was Dr. Chris Weldon, who would be performing Joey’s surgery early the next morning.
“When Joey and his sister Autumn went onstage to meet Santa, Dr. Weldon was dancing, laughing and taking pictures with us. He was creating a memory for our family that I will never forget and always be grateful for,” said Stephanie. “He was dressed in a complete elf costume with striped stockings, jiggle bell hat and all! He made a point to find our little Joey right away and we shared some laughs and pictures.”
The family ended up staying for the whole event. Stephanie says along with making fun memories, sharing the afternoon with Dr. Weldon prepared Joey for his procedure the next day.
“When Joey saw Dr. Weldon the next morning, he associated him with the elf he partied with the day before” she said. “What more could a mom ask for as her 3-year-old heads into major surgery— my son being happy to go with the elf into the O.R.!”
Dr. Weldon was not the only familiar face. Many Dana-Farber staff members attended the event, embracing the holiday season fun with patients and families: decorating cookies, making holiday ornaments, and dancing around in festive costume.
“The whole day was filled with laughter and smiles,” said Lisa, who, along with the Pan-Mass Challenge Team ROAR-Reindeers on a Ride, organizes the annual event. “We really try to bring special moments to the kids and families, a chance to take a break and have some holiday cheer and magic– this is their magic time.”
The Jimmy Fund asked me to share about our experience at the Winter Wonderland party, here is a letter I wrote for the Jimmy Fund...
The Jimmy Fund Winter Festival was a very special day for our family! The festival was the day before our son, Joey's tumor resection surgery. He has stage 4 neuroblastoma and since his diagnosis in August his battle has consisted of several chemotherapy rounds to reduce the tumor in preparation for removal, so needless to say, his tumor removal date was a highly anticipated day for us. Initially we were uneasy about taking Joey to such a big event with so many people. But Jimmy Fund families share similar practices and there were as many purell bottles as candy canes...more so, Joey's surgeon Dr. Weldon was in attendance! We thought, if his surgeon is going, Joey can go too!
Dr. Weldon wasn't just in attendance, he was dressed in a complete elf costume with striped stockings, jiggle bell hat and all! He made a point to find our little Joey right away and we shared some laughs and pictures. When our son Joey and daughter Autumn went onstage to meet Santa, Dr. Weldon was dancing, laughing, taking pictures with us, and in a way only he could, he was creating an everlasting memory for our family that I will never forget and always be grateful for. Even now my eyes swell with gratitude for Dr. Weldon's compassion and kindness...and now that Joey's tumor removal is over and a great success I am overwhelmingly grateful for his brilliance in surgery, on top of his wonderful elf capabilities.
When someone is a world renown brilliant pediatric surgeon you expect them to be exceptional at their practice. But to be an exceptional surgeon, in addition to volunteering their time as an elf at the Jimmy Fund holiday party...that's an all around exceptional human being! Joey got a toolbox that day, and he brought his toolbox with him to BCH the morning of his surgery. I know when he saw Dr. Weldon that morning he associated him with the elf he partied with the day before. What more could a mom ask for as her 3 year old heads into major surgery...my son being happy to go with the elf into the OR! I feel privileged that Joey is surrounded by a team of exceptional people at the Jimmy Fund, Dana Farber, and Boston Children's Hospital. They are shining examples of compassionate brilliant people dedicated to a cause of saving children's lives...who knows, maybe Joey or Autumn will be part of this exceptional team when they grow up...a mom can only hope!
The O'Neil family includes: Joseph, Stephanie, Autumn, Joey
Dr. Weldon wasn't just in attendance, he was dressed in a complete elf costume with striped stockings, jiggle bell hat and all! He made a point to find our little Joey right away and we shared some laughs and pictures. When our son Joey and daughter Autumn went onstage to meet Santa, Dr. Weldon was dancing, laughing, taking pictures with us, and in a way only he could, he was creating an everlasting memory for our family that I will never forget and always be grateful for. Even now my eyes swell with gratitude for Dr. Weldon's compassion and kindness...and now that Joey's tumor removal is over and a great success I am overwhelmingly grateful for his brilliance in surgery, on top of his wonderful elf capabilities.
When someone is a world renown brilliant pediatric surgeon you expect them to be exceptional at their practice. But to be an exceptional surgeon, in addition to volunteering their time as an elf at the Jimmy Fund holiday party...that's an all around exceptional human being! Joey got a toolbox that day, and he brought his toolbox with him to BCH the morning of his surgery. I know when he saw Dr. Weldon that morning he associated him with the elf he partied with the day before. What more could a mom ask for as her 3 year old heads into major surgery...my son being happy to go with the elf into the OR! I feel privileged that Joey is surrounded by a team of exceptional people at the Jimmy Fund, Dana Farber, and Boston Children's Hospital. They are shining examples of compassionate brilliant people dedicated to a cause of saving children's lives...who knows, maybe Joey or Autumn will be part of this exceptional team when they grow up...a mom can only hope!
The O'Neil family includes: Joseph, Stephanie, Autumn, Joey
Joey Update: RED SOX EDITION 11/9/15
PRAYERS |
LOVE |
HOPE |