D-Fense for Dylan Provenzano
Dylan's Mom Samantha Provenzano has become one of my sisters. Sam has always gone above and beyond for others in need. Always having fundraiser to raise money for different causes. Not a moment goes by that she is not thinking or doing something for someone else! Now the time to give back to them! I don't want them to have to worry about anything during this time. So I ask all of my friends if you could spare a little and even forward this on it would greatly be appreciated.
It has been a long month but a great summer.
End of June we had a relapse scare. Which ended up having Dylan receive a 5hr MRI under GA and the longest most stressful day of our lives. The next day we had his clinic appointment and were told that he was...
However they did find that there are some long term effects that he has -- such as chronic pain and early onset arthritis. So name of the game is... pain management, rehab, physical therapy, sport medicine doctors, rheumatologist and oncologist every 3months, cryotherapy and looking for alternative therapy for his PTSD (looking for someone who can do alternative progressive therapy not sitting down and talking or drawing.. but willing to get him outside and doing things and talking thru them) BUT... one good thing is.... we met with his orthopedic surgeon out of Comers Children's Hospital... and he said we no longer need to come every 9weeks for a follow up... he is so pleased with the way Dylan is healing from surgery that he only needs to come on an as need basis!!!
He has also put Dylan's story and healing process from a surgery standpoint in the books for Doctors and Researchers to call us... he is amazed at all that Dylan has and continues to do 1year post surgery!
Dylan this summer... has HIT his 1st home run in a game since diagnosis... he has won a tournament with his baseball team... he has helped raise 10,000 for the Anthony Rizzo Family Foundation with a celebration Home Run Derby we hosted, he got his 1st hair cut post chemo.. GOODBYE BLONDE.. HELLO STUD
He continues to strive thru the pain and just be a KID..
It is hard to believe but so exciting in 1 month he will be entering 8th grade and in 2months we will be celebrating his 1yr out of treatment and his 14th birthday!!
Thank you all for your continued support and well wishes! Please don't ever stop sending all of the positive vibes and juju out in the universe!
We also wanted to reach out and update everyone.
Dylan is doing so well right now. He finished his last chemo of this frontline at the end of September and was considered NED (no evidence of disease) on 10.5.17
He has enjoyed every second of getting back to "normal" life... he is struggling from some long term side effects of the chemo and surgery but trying to do whatever he can to beat the odds. He will have a long road ahead of him for the next 5 years (every 3 months he is set to have a series of tests and scans to make sure that this pesky little Ewings Sarcoma stays FAR AWAY)
He has begun pitching lessons again and will be starting a baseball camp in January, he also completed a 5K at the beginning of December... if he can do that 2months after a year of intense chemo I know he can and will continue to move mountains.
Dylan is set to have another set of scans on the 29th of December which has us all on edge as it seems SCANXIETY is the most traumatic thing a parent and patient can have... We are crossing fingers that all is good and he will be NED again and then he can have surgery in January to remove his port. Next steps are to continue PT at home (as he has tapped out of PT for insurance and fulfilled his prescription) We do realize how vital it was for him to keep it up during the entire treatment and we will keep him doing it. He wants to try out for a baseball team this winter so he can play in spring but we are playing that by ear.
His hair is growing back and for those of you who know, the SWOOP is back... a little blonder and softer but it is there and he could not be happier.
So keep those fingers crossed and send all the good healing vibes that all goes well next week!