Update on Dana, the incredible new Super Mama fighting DIPG, and it’s off to Jamaica for some fun and then on to Mexico for a promising DIPG trial. Sending lots of prayers, hope and positive energy her way! xo carol
2 week update! The last few weeks have been very busy and stressful to say the least. Dana overcame a stomach bug 2 weeks ago (as did we all), kidney stones whi...ch have been confirmed are gone, and she’s now dealing with a bout of double vision and a small infection. Needless to say, when it rains it pours, but we’ve visited CHOP throughout each instance and are ready to leave for Jamaica tomorrow morning for a fun and relaxing week on the beach.
A big Thank You to Make-A-Wish Greater PA and WV for making this possible. Although being a ‘wish child’ is one thing nobody wants, everything Make-A-Wish does for children and their families is nothing short of amazing and we’re grateful for the opportunity they’ve granted Dana and ours. And outside of a little R&R, Make-A-Wish has also booked us to go horseback riding on the beach and to swim with the dolphins. Golfing may also fit it’s way into the trip, but we’ll see how everything goes.
Aries has been doing really well over the past few weeks. She’s almost 8 pounds now and we think she’s just about ready to move onto cereal, even though she’s only 3 months. She’s still cuter than ever and takes up most of the attention whenever she’s in a room but she, along with her 2 and 3 year old cousins in the added pic, will be staying back in the cold weather to “watch the fort” while we’re away.
Although there hasn’t been many updates, the love and support over the last few weeks kept pouring in and we can’t thank you all enough. God has been a huge catalyst for all of us since the start of this journey, but the community Dana has has been a major point of hope and encouragement. We can’t imagine where we would be without it. Thank you for thinking and praying for Dana each and every day that you do.
Another notable Thank You, to Eze Castle Integration for their GIANT matching donation of $18,000 today!! We’re overwhelmed by the amount of generosity and support they’ve shown Dana and our family from the beginning. It’s important to note, not only did they manage to raise $18,000 internally, but to match that amount without a tax benefit, just speaks volumes to how much they care about family. And this was all made possible by one of the best, if not the best CEO around, John Cahaly. Thanks John and Eze Castle!
We’ll be sure to post photos and updates throughout the trip. After we get back, it’s on to Mexico! God bless!
Devin’s Mom also ran the marathon today which I found so inspirational. Last year she crossed the finish line holding her precious Devin’s hand. Today she had his angel wings to guide her. 💚 #whynotdevin
Boston Marathon Mission of LOVE for local DIPG Angel, Devin 💚 #whynotdevin
Thank you, Andrew, for not “looking the other way” when it comes to childhood cancer. We need more compassionate folks like you!
In loving memory of Devin Suau.
Today, I will honor a young man taken too soon. Today, I will run the Boston Marathon. As the rain pours and the winds howl an...d the temperatures drop, I can’t help but smile. Devin was a fighter. Tough as nails. If I’m going to do something to honor him, it can’t just be normal tough. It’s gotta be spectacularly tough. It needs to feel impossible.
I like to think he has a hand in this crazy weather. Reminding us all that there may be bumps in the road, things may not go as planned, but you fight. You move forward. You have faith and hope. Devin embodied what we will do today. He was a fighter. And although he earned his wings, his fight continues through us. We carry his torch now, and I’m honored to do so. So bring it on! Bring it all on!
For you, Devin. You are always in the fight!
If you care to track a slow but glorious run, my Bib number is 27155.
with Christine Soutter Suau, Jennifer Barnes Norris, and Lorelei Aviza Capuzzi
Special thank you to Tedra Averett Jack for making this amazing cape!
Fantastic news on Brooke who’s been LIVING with DIPG for over two years now.! This little New England cutie has been having treatments in Mexico where they just received a positive report. Please keep the positive thoughts and prayers coming. Thank you. xo carol
Hi Everyone! Another great report! Continued fading of the spots in her thalamus. Plus, her original tumor has gone from stable to shrinking a bit more! Thi...s is comparing from just three weeks ago so that’s very encouraging. It is responding so well. I’m so happy to be able to share this news. It never gets old. Thank you for your continued prayers. Brooke is feeling well and working on her occupational therapy. She sends her ❤️ to you too! Keep faith! Pray bold!🎊
Ohio is the first state to make a license plate that will help raise awareness for DIPG. Which state will be next? 💚💛
It’s “PAPPI!” A wonderful local foundation (Magical Moon Farm) here on the south shore of Massachusetts, making dreams come true for this sweetie and her family, who had the opportunity to attend the Red Sox opening game at home. What a WICKED awesome end to the game with a home run to win it for the Sox! Please keep this beautiful and brave Knight in your thoughts and prayers as she battles a brain tumor. Thank you. xo
Another Dream come true for one of our Magical Moon knights and her family on Opening Day! Thank you Dana van Fleet, The Red Sox, Cask N Flaggon for the suite,... the ride in and out, the great lunch and all the extras like getting to meet David Ortiz!!!! Woo Hoo! Tell me miracles dont happen every day !
This all happened because one little girl with a brain tumor thought about giving her family something really special and dared to ask... Once again, Manifesting Miracles at Magical Moon Farm.
Thank you all for reaching out and spreading the word!
Tony, who is from New Hampshire, has been a HUGE driving force in our childhood cancer community since his son, Cole, was diagnosed (and has since gained his angel wings) with neuroblastoma. His devotion is INCREDIBLE and it was because of Tony that the Boston Red Sox held a childhood cancer awareness night, numerous buildings in Massachusetts and NH went gold in September (childhood cancer awareness month) and he’s responsible for many other action steps. Tony has been instrumental in attempting to get the White House to GO GOLD, working tirelessly all year long and now it’s our turn to be there for him. PLEASE keep Tony and his family in your thoughts and prayers. Thank you. xo carol
I had been preparing to go back to the Appalachian Trail on April 15th to continue to take #5MillionSteps for kids fighting cancer, but I had not been feeling w...ell for the past month.
On Monday, March 26th, it was discovered that I have colon cancer.
I will be meeting with doctors in the next few days to discuss possible options to battle this.
My focus will be doing all I can to beat this cancer and spending time with my family.
However, I will continue as much as possible to keep fighting for our kids battling childhood cancer.
This is my turn to be #BraveLikeCole
(It will be difficult for my wife and I to respond to messages, texts, and phone calls, we will be overwhelmed with all that is about to come, so please just send prayers for my family, and mostly for our children affected by cancer who need us all to keep fighting for them)
Tony (Cole’s Dad)
"Fighting Childhood Cancer On All Fronts"
Sophia's Fund is a 501c3 Non-Profit Organization
What an UPLIFTING post to share about one of our first Warriors, the brave and beautiful Miss Myah! We couldn’t be any happier for her and her family, who we connected with at the beginning of their journey six years ago. 😍
Today is joyful!!! Celebrating six years of life with our spunky little warrior! Six YEARS since Myah was diagnosed with brain cancer at age 4 1/2. Years... we were advised by her oncology doctors that we may never have.
She is such a spunky little fighter and her personality is so fun, sweet, sassy, mature and joyful—even after the awful struggle to fight for life and all of the fall out from full brain and spine radiation and heavy iv chemos through out her year and a half protocol.
Myah loves life. She enjoys playing with her friends, camping, cooking, fishing, dancing, swimming, riding a quad, gardening, shooting nerf guns and wrestling and joking around with her dad, sisters and cousins.
She loves family, holidays and her pets—and learning to be leader in Girl Scouts. Spoiling from Grandma Nancy and all of her aunts and uncles is a joy.
Even though she is the youngest child on both sides of the family — she can stand up for herself and is a self advocate. She makes us proud everyday.
Her body no longer produces hormones and cortisol (helps the body fight stress and illness) and she quit growing (gets a shot every night of HGH). She suffers from muscle and bone pain, neuropathy in hands and feet, has had cataracts removed from each eye and wears hearing aids to combat loss due to chemo and radiation she continues to be such an inspiration and hero.
I hope this update brings a lift to everyone’s day whom supported Myah through prayer, kind words and acts of kindness and offers hope to those that have a child battling this beast as I type.💛❤️💛💜💛💗💛💚💛
We are blessed. Her next MRI will be in July. Praying for continued NED (no evidence of disease).🙏🏻🙏🏻🙏🏻🙏🏻
I think it’s important for folks to see that childhood cancer isn’t just all cute smiling little bald kids. Listen to this courageous 11 year old Warrior named Eve and please feel free to share and make others aware. Thank you. xo carol
Please keep Dana in your thoughts and prayers as they pursue further treatment for DIPG in Mexico. Thank you. xo carol
“Last week, after completing radiation on February 1, her family decided their best option now is to head to an increasingly sought-after clinic in Mexico, which offers the only experimental treatment in the world for DIPG, in a bid to extend Dana's life.”
Sweet Elijah, who was part of our Magical Fairy family for over four years during his battle with a medulloblastoma/DIPG brain tumor, should be here celebrating his 9th Birthday today with his Mom and little friends. Mom is one of the most devoted, loving, caring, strong and courageous women I’ve ever seen and with Elijah being her only child, I’ve watched her get back up time and time again through this ferocious journey. Please keep his loved ones (especially his Mama) in your thoughts and prayers as they navigate through this first birthday without him. Thank you. xo carol
A picture worth a thousand words. ❤️
An update on beautiful mama, Dana, who is battling DIPG and has important decisions to make. Prayers and positive thoughts for clarity. Also, there’s an address at the bottom of the update for those wanting to send cards or gifts to Dana and baby, Aries.
Thank you. xo carol
Sorry for not posting sooner! Dana came home from the hospital early Tuesday morning and she’s been feeling fairly normal since. There’s no clear answer for the... stiffness she’s experiencing but the doctors think it could be anxiety and/or weaning her off the steroids. They gave us a plan and we’re putting our trust in God that he’s taking care of things.
Dana and Aries are inseparable. The love they have for each other is a bond that can never be broken. DIPG will never take that away from them.
We haven’t made a decision on Dana’s treatment yet. It’s been the biggest challenge we’ve had to face and it may be some time until we decide. The MRI she’s scheduled for in March will tell us more about the status of her tumor. It’ll also qualify her for a trial at MSK. There’s options like Mexico on the table, but we’re just not ready to pull the trigger. We pray every day for God to guide us in the right direction. A big thank you to everyone who’s taken time out to speak with us about certain treatments.
I want to thank everyone who’s been following Dana and our family throughout this difficult time. Thank you for being so supportive and showing so much love and care for Dana and Aries. We’re extremely lucky and fortunate to have such an amazing community behind Dana and our family.
We had a box set up for anyone who’d like to send cards, letters, pictures, etc., to Dana and Aries. Thank you to everyone who’s already sent a gift or card!
P.O. Box 185
Weatherly, PA 18255
Help put a SMILE on the face of a Children’s Hospital patient on Valentines Day! It only takes a minute and it’s free! Please click on link to make your card. Thanks! xo carol
Look who completed radiation treatments and got to go home! It’s beautiful new mama, Dana, and her sweet baby girl, Aries, and thank you to all who have supported this brave duo. Dana, who was pregnant with baby Aries when diagnosed with DIPG, and Aries, who came into this world a few months early, will continue to enjoy quality time together. Dana will be making a decision on which treatment plan she will proceed with to keep the cancer from growing. Prayers and positive thoughts for clarity. Thank you. xo carol
What an incredibly strong and courageous woman! Dana was feeling good going into today’s session and all went well as expected. The team at Perelma...n had some gifts for Dana and Aries for completing radiation and a poster that read, ‘Dana is Amazing!’. We think she’s amazing too 🤗
I want to take a moment to thank everyone at Perelman, CHOP, HUP and all the other doctors and nurses that’s helped make this time in radiation easy and comfortable for Dana and Aries since day 1. Thank you so much! We will never forget all that you’ve done!
From not knowing which doctor to trust, to undergoing radiation while Dana was pregnant, to unexpected trips to the hospital, it’s been a rough and ambiguous couple of months since diagnosis. Many ups, many downs, but through it all, God remained the guiding light we all needed. We thank him every day for the doors he’s opened and for the amount of people who have been so kind and supportive to Dana and our family.
And finally to you. To everyone who’s been there for Dana, we thank you from the bottom of our hearts. Your messages of love and prayer, your lovely gifts, your selfless acts of kindness, all of it has lifted Dana’s spirits and kept them high throughout this entire time. Words can’t express how thankful and grateful we are for all of you. Thank you!
Now, it’s finally time to head home. Dana has an appointment tomorrow afternoon but will be heading back home after. We are continuing to speak with doctors to determine the next course of treatment but have scheduled her post radiation MRI for early March for the time being.
Although we like to focus on the positive, there is a darkness that still remains. Please continue to donate and help share Dana’s story. Please continue to pray for Dana. God has a purpose for her, and this is just the end to the beginning of his plan. God bless!
“THE STATE OF CHILDHOOD CANCER ADDRESS”
Each year around this time the President of the United States goes before Congress and delivers his vision of where he b...elieves our country must focus its resources and energy to makes us a stronger nation.
Each year, there is no mention of the #1 killer by disease of our nation’s children; childhood cancer.
No grand announcement that we will make childhood cancer a national priority.
No directive to increase funding for childhood cancer research.
No declaration that the White House will light gold in September as a sign to children battling and killed by cancer that they are not forgotten.
Each year during the State of the Union address, kids affected by cancer and their families are not mentioned … saying nothing about a disease that kills more of our kids than all other childhood diseases combined says a lot about our nations priorities.
I’m saddened that our children battling cancer are not a priority of this administration, just as they have not been a priority of administrations before.
It’s up to us to change this!
Contact the White House and demand that it’s time for childhood cancer to become a national priority! It’s time to light the White House gold in September during Childhood Cancer Awareness Month! It’s time that childhood cancer research receives more than 4%! It’s time to stand up for our kids battling cancer … now!
Contact the President here: https://www.whitehouse.gov/contact/
Until we rise up and speak up for our kids, the “State of Childhood Cancer” will not be one that holds much hope or promise for our nation’s young who are battling, suffering, and dying every day.
Praying that the day comes soon when those of us who have been devastated by the monster that is childhood cancer will watch a State of the Union speech and hear the words we are so desperate to hear.
Tony (Cole’s Dad)