As most of you reading this know, my son Nicky Sorbelli has been fighting T-Cell Lympblastic Lymphoma since his diagnosis May 2015 – his cancer became chemo resistant so they had to switch to a harder chemo and a bone marrow transplant.
Nicky’s last PET scan showed live cancer activity in his chest where it was originally in the lymph nodes in front of and around his thymus.
He is getting a blood transfusion (hemoglobin) as I type this. He is going in for a biopsy to verify the exact diagnosis of what they are still calling T-Lymphoblastic Lymphoma and this would be considered a recurrence as they were pretty sure it was all gone.
The doctors here at Miami Childrens Hospital have sent all of Nicky’s info to the leading children’s hospitals in the country and four of the top lymphoma doctors in the nation for a review in front of the world’s round table of thinkers in this stuff.
So far everyone agrees to hit it back with a different chemo that is kept in reserve just in case cancer builds resist endive to the first chemo- which his obviously did. So far all say to prepare for a bone marrow transplant. So we are looking for a bone marrow match donor!
We have been praying harder that ever and are asking everyone to buckle down and pray & mediate, please go now before whatever power that you call God, and beg for some positivity & help in Nicky’s direction.
We need to start looking for a bone marrow match for Nicky’s transplant. You can get a free home test at www.BeTheMatch.org
Thanks and as always I will keep everyone posted as we go, as I can.
We are heading back to Miami today from our miracle Thanksgiving break to start the last four-six weeks of intense treatment (the hardest and scariest part) then down to once a month chemo infusions for a year and a half and chemo by pill for the next three years after this phase. It not easy but he is winning the war on his cancer and kicking cancers ASS one cell at a time!!!
We had a great Thanksgiving at home with family and friends and got some much needed rest and recouperation as we are getting ready for the hardest and most intense part of Nicky’s chemotherapy.
Please keep your fingers crossed and keep sending the prayers and well wishes PLEASE! We are living on prays by the pound right now.
Bumper stickers for sale at Wayne’s World Music Dallas Pa and Island Guitar aka Bone a island Music Key West or just msg, text call or email us Many thanx. CONTACT http://islandguitar.com/contact-location/
Nicky Sorbelli, my 10yr old son, the bravest boy I’ve ever met – just had his finger picked to get blood work that showed he qualifies for his chemo today (that means his body can handle the chemo without it killing him) Now he just got his MediPort (heart port) activated (the heart port is a small rubber sphere similar to a super ball with a few IV lines that come off it. The port was placed in Nicky’s chest via a minor operation just under the skin but atop the breast muscle and the lines were fished though the main arteries and directly into his heart. This is to protect his veins from the ongoing chemo treatment preventing burning and damage during infusions. The port goes directly to the Heart and pumped to entire body quicker and safer. To “activate” the port we put numbing cream on the bumble on his chest. Then the qualified nurse sticks a one inch 20 gauge needle into it then hooks any and all meds directly to the access needle not having to stick Nicky for any thing else during this stay at the hospital. Which is awesome because constant needles and children do NOT go well together.
After the first chemo infusion Nicky will head down to minor procedures for a lunar puncture (spinal tap chemo)
Thanks for all the prayers and for the continued support with the fundraisers and benefit concerts – we are blessed by and because of you all.
Once the heart port is activated and the IV lines hooked up, they hang the bags of chemo and medicines and let the infussions begin.
It’s sit back and wait now. In between the vicious spells of nasea we like to play video games, paint with our artist friend Diana De Los Rios, or even play a little ukulele or guitar together.
I should add that Nicky still does his school work every day and online skype lessons with his teacher almost daily – yes even while in the hospital Nicky WANTS to keep learning. His grades are great and he is moving through the ciriculum at a fast steady determined pace. He is truly my hero on so many levels. I am humbled by my 10 yr old son. Thank you God & Jamie for giving me such a wonderful soul – a wonderful person – my hero Nicky Sorbelli.
We were training on being cancer killing Heros and keeping positive so that we may unleash on the beast cancer a serious butt kicking.
We have to be tough REAL tough – ZOMBIE TUFF !!! So we practicing getting ZOMBIE on today’s catch so we are prepared to take on Nicky’s blood cancer.
We are getting ready to go in for phase 3 of 4 intense chemotherapy on Tuesday morning. We were at home in Key West for a few days of “rest/fishing 😃👍” – getting ready to head back to Miami in a few hours. It would have been great to see our friends this weekend but so sorry we couldn’t make it to Jazz Cafe Benefit for Nicky (we were under doctor’s orders to avoid anyone but immediate family & avoid all crowds (because Nicky’s immune system is very compromised at the moment as the chemotherapy does its job on the cancer) which makes fishing on a boat in the gulf of Mexico away from everything and everyone a relatively SAFE but very fun activity (except for the swimming with the SHARKS part lol just kidding)
I’m asking in advance to please keep sending prayers!! Thank you
Updates at www.Sorbelli.com
List of Nicky benefit concerts http://islandguitar.com/nicky-sorbelli-fundraiser/
We are getting ready to go in for phase 3 of 4 intense chemotherapy on Tuesday morning. We were at home in Key West for a few days of “rest” “fishing 😃👍” – getting ready to head back to Miami in a few hours. It would have been great to see our friends this weekend but so sorry we couldn’t make it to Jazz Cafe Benefit for Nicky (we were under doctor’s orders to avoid anyone but immediate family & avoid all crowds (because Nicky’s immune system is very compromised at the moment as the chemotherapy does its job on the cancer) which makes fishing on a boat in the the gulf if Mexico away from everything and everyone is a SAFE and still very fun activity (except for swimming with the SHARKS lol)
I’m asking in advance to please keep sending prayers!! Thank you
Nov 8th NEPA Benefit Concert To HELP my son 10yr old Nicky Sorbelli with his epic battle to Kick His Blood Cancers Ass still needs donation baskets and raffle items. PLS SHARE
OMG these bands are awesome. This is gong to be a GREAT MUSICAL CALL TO ARMS for NEPA and for the GREATEST CAUSE IN THE WORLD – so my little boy can continue to battle his blood cancer and my wife and I can afford to stay by his side over the course of the next several months while he continues his chemotherapy.
Aside from the donations and raffle items that all my friends are throwing in, I will be giving up many of my personal items to put into the raffle – like a bunch of music collectibles & autographs & records, as well as a few of my guitars. An all black USA Strat, a vintage cherry Dean Gran Sport, a few work horse guitars like my Reverend Charger HBFM and Nylon string guitar, and more.
“Slide Ukulele Note Prayers part 2” dedicated to my 10yr old son Nicky Sorbelli’s Cancer Battle.
Pink Floyd style solo slide ukulele dedicated to the recovery of my son Nicky Sorbelli battling cancer
Pink Floyd style solo on ukulele beer bottle slide. Wayne Sorbelli @ Island Guitar & Ukulele shop Key West. HELP Nicky Sorbelli my 9yr old son whom we just discovered has T Lymphoblastic Lymphoma (cancer) & we badly need everyone to HELP & PRAY & SHARE.
So far he is responding well to treatment.
What I can’t say with words I can with my notes. What I can not say with with my mouth I can say with my hands. So pls listen and pray while listening to it. Please find the hope, not the pain in my notes.
For those of you who are unable to attend a fundraiser, donations can be made directly to any First State Bank branch by mentioning Wayne and/or Jamie Sorbelli and the account ending in 2487.