Category Archives: Jamie

The heart port was placed in Nicky’s chest via an operation just under the skin but atop the breast muscle. The lines were fished though his main arteries and directly into his heart for chemo infusion- then a lumbar puncture & spinal tap chemo. My hero Nicky Sorbelli

  
          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. 

Follow Nicky’s own blog page: https://sorbelli.com/nicky/

List of Nicky Sorbeli Cancer KILLER benefit concerts: http://islandguitar.com/nicky-sorbelli-fundraiser/

Family website: www.Sorbelli.com

To donate to Nicky’s Cancer Killer Fund: https://www.gofundme.com/uldcw0

 
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. 

Sorbelli Family Zombie Cancer Killer Super Heroes going to teach Nicky’s blood cancer a lesson on how to GET OUT & STAY AWAY

 

Sobelli Cancer Killer Zombie Heros
 
  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/

Getting ready to start phase 3 of 4 intense chemotherapy on Tuesday morning. We r at home in Key West for few days of “rest” & light fishing w/Commander Hawk Fishing Charters. 

  
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 

Benefit Concert for Nicky Sorbelli’s Blood Cancer Battle NEPA Nov 8th, 2015 River St Jazz Cafe, 667 N. River St. Plains, Pa

  
The schedule for the bands is set:

3:00 : Strawberry Jam

4:00 : George Wesley

5:00 : MIZ

6:00 : Behind the Grey

7:00 : StingRay’s Blues Band

8:00 : BKOEC

9:00 : Halfway to Hell

10:00: Delirium

Please drop off any donations, silent auction items, or gifts for raffles in person or mail to Waynes World Music  2611 Memorial Hwy Dallas, Pa 18612

Follow Nicky and the rest of the family on our personal site wwww.Sorbelli.com 
Monetary donation can be made dorectky to First State Bank Of The Florida Keys account SORBELLI 2487 
OR 

Nicky’s gofundme account https://www.gofundme.com/uldcw0 
Nicky & I are typing and loading pictures on Nicky’s own page on our Sorbelli family website at https://sorbelli.com/nicky/

NEPA musicians Benefit Concert To Help 10yr old Nicky Sorbelli Kick His Blood Cancer’s Ass Nov 8,2015 @River St Jazz Cafe, Plains Pa 

  
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. 

Follow Nicky and the rest of the family on our personal site  wwww.Sorbelli.com 

Monetary donation can be made dorectky to First State Bank Of The Florida Keys account SORBELLI 2487 

OR 

Nicky’s gofundme account  https://www.gofundme.com/uldcw0 

Nicky & I are typing and loading pictures on Nicky’s own page on our Sorbelli family website at https://sorbelli.com/nicky/

While on break from chemo Nicky driving the boat back home to Key West from fishing trip w/Commander Hawk Fishing Charters

While on break from chemotherapy at Miami Childrens Hospital we headed back home in Key West & got on the water as soon as we could. Friend Tim of Commander Hawk Fishing Charters made sure we had the best adventure ever!! Here is a video of after we caught a bunch of snappers and Nicky caught a 7.5 ft shark – Nicky learning to navigate our way home from the fishing trip – driving the fishing boat!!

Fishing in Key West Nicky catches 7.5ft 150lb SHARK  while taking 5 day break from chemotherapy @ Miami Children’s Hospital

With 5 days off from chemotherapy and the Miami Children’s Hospital we headed back to our home in Key West and went fishing with Commander Hawk and the family. 

Nicky was catching some BIG snapper but ramped up the adrenaline on board when he hooked a 7.5 SHARK!! A HUGE nurse shark!! It took him almost 5 minutes to bring in this “sea monster” OMG SHARK!!

I never thought I could love anything or anyone as much as  Jamie Maniskas Sorbelli when I met her over 20 years ago, but,,,


I never thought I could love anything or anyone as much as Jamie Maniskas Sorbelli when I met her over 20 years ago, but when I look at this picture I know I was wrong.

Love defies logic. Two plus two is not always four. Time and space bends for love. How can I love something “MORE than the MOST” more than 100%? I do. I love these kids and Jamie more than the most. Way more than ALL or 100%. This is math for Gods not humans I guess. Now to spend less time figuring out how or why and just enjoy all this LOVE!

Here is my :58 second prayer song “Ukulele Side Blues” dedicated to NICKY’s fightjng cancer.

OFFICIAL UP TO DATE everything Nicky Sorbelli. https://sorbelli.com/category/nicky-sorbelli/
OFFICIAL UP TO DATE LIST OF FUNDRAISRERS for Nicky Sorbelli: https://sorbelli.com/category/nickys-cancer-benefits-fundraisers/
To donate to Their Go Fund Me site: http://www.gofundme.com/uldcw0

Peace , Later

 

Jamie, Nicky & Wayne Sorbelli in Coconut Grove South Miami 2015

Jamie, Nicky & Wayne Sorbelli Key West Guitar, Piano & Ukulele  Lesson Studio Owners Relaxing in Coconut Grove 2015
Jamie, Nicky & Wayne Sorbelli Key West Guitar, Piano & Ukulele Lesson Studio Owners Relaxing in Coconut Grove 2015
It’s a long hard road but we are “getting by with a little help from our friends” !
We thank all of our family and friends for continuing to add funds to our gofundme account as this treatment is ongoing and INTENSE requiring both Jamie and I to rent an apt next to the Miami Children’s Hospital.   Our key west home is just too far from the treatment and careNicky needs and to be traveling back and forth is not practical or safeand furthermore there is not a single person in the lower keys who knows how to work with my sons chemo heart port, which makes treating Nicky in a possible emergency a real problem. So we can’t work as our store and jobs and all my guitar students are 3.5 hours away from us now. . We are away from our home and friends. Yes we are living on the edge fighting for life and for finances. We r ripping through our life savings & this gofundme account to hold us over and pay our bills until this intense part of chemo is over at the end of this year when then I except to go back to work. FORWARD THINKING, FORWARD MOVING, BLESS UP!!
Here is my :58 second prayer song “Ukulele Side Blues” dedicated to NICKY’s fightjng cancer.
OFFICIAL UP TO DATE everything Nicky Sorbelli. https://sorbelli.com/category/nicky-sorbelli/
OFFICIAL UP TO DATE LIST OF FUNDRAISRERS for Nicky Sorbelli: https://sorbelli.com/category/nickys-cancer-benefits-fundraisers/
To donate to Their Go Fund Me site: http://www.gofundme.com/uldcw0

 

Nicky headed in for a blood platelet transfusion and chemo

  
We are at the Miami Children’s Hospital. Nicky’s blood levels dropped very low so we headed in for a blood transfusion yesterday where he got his chemo at the same time, then saline and hydration because he was puking so bad from the chemo he lost lots of fluids.  

He started bleeding from his nose, mouth and rectum so he go a blood platelet transfusion which stopped the bleeedning THANK GOD!

He’s awake and recuperating now. They took another blood test a few minutes ago and now we wait to see if he’s needing more blood or if we can make out way back to out apt in Miami. The chemo is a hard road but it is kicking the cancers butt AMEN

It has certainly been another hard long day and night of fighting on the frontline of operation Kick Cancers Ass 

Here is my :58 second prayer song “Ukulele Side Blues” dedicated to NICKY’s fightjng cancer.

OFFICIAL UP TO DATE everything Nicky Sorbelli. https://sorbelli.com/category/nicky-sorbelli/
OFFICIAL UP TO DATE LIST OF FUNDRAISRERS for Nicky Sorbelli: https://sorbelli.com/category/nickys-cancer-benefits-fundraisers/
To donate to Their Go Fund Me site: http://www.gofundme.com/uldcw0

Peace , Later