musician, dad, father
After a hemoglobin blood transfusion, chemo and a blood platelet transfusion Nicky rests, eats then wants to head to the movie theater by our aptartment in Coconut Grove – I’m all smiles!!
Thanks for all the prayers, caring, prayers and continues sharing of resources and THANK YOU Mr and Mrs anonymous for the movie ticket passes!!
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
After a visit from a clinic nurse for a shot of morning chemotherapy, Nicky caught some rest, then he Jamie & I caught some FISH & FAMILY FUN at Matheson Hammock Park Lagoon in South Miami.
During this phase of chemotherapy, phase two of four, we stay at our Coconut Grove apartment because it’s only 12 minutes to the Miami Children’s Hospital. During this phase, while low blood counts are a normal and nessessary part of the treatment, if Nicky should run a fever or begin to get sick, we need to administer antibiotics and medicines within the hour, and unfortunately for us, the Dr’s at the Lowerr Keys Medical center or anywhere else in the keys are NOT trained in how to access a heart port like Nicky has, making any mild medical emergency in Key West for Nicky, a real emergency. So we are staying close to the Miami Children’s Hospital for now.
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
After a blood transfusion of two bags of blood over 7 hours, Nicky’s hemoglobin level is back up to above 8 which the doctors say is good for this stage of chemotherapy ARAC, which lowers the blood cell counts (t-cells) where Nicky’s cancer originated. This chemo treatment purposely lowers the body’s natural immune system, then we rebuild minus the cancer’s influence or presence.
We are back at our temporary apartment in Miami recuperating while exploring around some outside areas (gardens and museums) and SOME inside activities (play video games and guitars). When ones immune system is weak from illness or as part of treatment, one must avoid crowds of people inside or out & avoid inside closed areas with anyone at all – this minimizes the risk of illness or infection while the body is in this temporary but nessessary part of the treatment for “T-Cell Lypoblastic Lymphomo”, which is my son Nicky’s diagnosis.
We firmly believe that all of the praying and positive vibes sent by our family and friends indeed are just as responsible for Nicky’s recovery as the chemotherapy and modern technology are. The steady stream of social media and website messages and emails to Nicky and our family members by our friends and support groups gives Nicky, Jamie, Leela and all our family the boost of unprecedented courage, patience and willpower it takes to ease the blow of the chemo and focus and maximize the damage to the cancer cells and their influence. We believe that the cause is the cure! I really truly believe this! I believe everybody has cancer and kills cancer cells on a daily basis. Myself and friend Dr Michael Norman and his mentor Dr Charles Majors, believe that we figure out why Nicky’s body turned cancerous when it did and then how to prevent as well as kill the cancer presently existing and preventing new cancer cells from forming. Doing this kind of research WHILE going through the chemotherapy is very taxing. Not only are we kind of stuck between two often disagreeing and contrasting belief systems but also stuck between state laws and the insurance companies compliance – what they do and do NOT cover $$. One group believes in focusing in on killing the cancer with chemo , and the other approach is to use more natural and environmental factors and “outside the body behavior modifications” which either kill or prevent the cancer. I believe in combining both.
In Nicky’s case it WAS a chiropractor or natural approach that discovered his cancer – NOT modern technology or science. But immediately AFTER discovering the tumor in Nicky’s chest it was the CHEMO, modern technology and SIENCE that shrunk the mass, took all of the suffocating pressure off of his heart and lungs from the mass (tumor) inside his chest , stabilized his condition, and saved his life.
So any way you want to roll it up – go for it – but please keep the prayers and positive thoughts flowing Nicky’s way. Please don’t stop the stream of encouraging messages and emails. Please keep sharing our posts and spreading the word. They’re the better.
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’s hemoglobin levels are low from his chemotherapy so he’s getting a blood transfusion today. His platlets are good and his white blood cell count is fair, but hemoglobin is below 5, which is teetering on passing out, so a blood transfusion is nessessary.
The plan now is one bag of blood transfused through his heart port over the next the hours, then rest an hour, then another bag over following three hours, then observation until 4 am – then following an early morning CBC blood test we will either be getting a third bag of blood or going back to our Miami apartment to rest up.
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
Wayne “Woken Lion” Sorbelli
These notes are dedicated to my son Nicky Sorbelli. “Ukulele Slide Blues – Notes For Hopes”
☀WHEN☀ Wednesday, August 5th,2015 10:30AM
🏠WHERE🏠 In front of Wayne’s World Music Lesson Store 2611 Memorial HWY Dallas PA 18612. (570)-674-1995
Come enjoy delicious bake goods, drinks, jellies, homegrown vegetables & more.
Face painting for the little ones!! 😃
*Monetary Donations also appreciated day of sale.
OFFICIAL UP TO DATE LIST OF FUNDRAISRERS for Nicky Sorbelli: http://sorbelli.com/category/nickys-cancer-benefits-fundraisers/
Some Sorbelli Family time, Jamie, Nicky and I at Fairchild Botanical Gardens, Miami Florida. When having a good day with good blood counts,good white blood cell counts, days with energy to spare (while kicking cancer’s ass), we explore around beautiful Coconut Grove & South Miami area.
Some “mind over matter” training over the past few days had helped Nicky break cancer’s “stop eating” spell – it was not an easy battle, but Nicky wooped its ass & his hunger came back with a vengeance.
Shortly after eating his energy came back & then, and with perfect timing, a friend of Nicky’s from Key West visited us at our Miami apartment for the evening and is coming back again to play tomorrow!
We want to thank every single person who sent prayers and positive thoughts and messages and encouraging emails etc. thank you. The good intentions and prayers payed off and worked and helped us make it through “a pretty rough” past few days.
Many many thanks to Nicky for being such a warrior. He’s my little lion cub “Nicky the Lionheart”
Super extra special thanks to my wife and Nicky’s mother & MOM Jamie Maniskas Sorbelli – she is the floor from which my world begins to be built -period.
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
One cancer ass kicking day at a time,,, but yesterday it was almost kicking our ass, it was a little, but I think we bounced off of a “bottom” and pray that today is better. I have a feeling it will be better today.
Nicky is sleeping right now so I’m just praying and reading over the posts by friends and all the positive vibes and prayers out there on my web sites and email and texts. It’s so awesome and uplifting. It really helps us to have all the digital age support – there would be a big void if we didn’t keep up digitally and with our web site and messages and emails!!!!
When it comes right down to it – we’ve been keeping track – when we reach out for prayers and help – its stronger than chemo — its stronger than food or vitamins — some powerful stuff, the power of positive thought. The cancer & or chemo is tricking Nicky into not eating much at all, really if he doesn’t eat today we’ll be going into the hospital for sure 🙁
There is so much psychology going on here at the moment at Casa Sorbelli. We can’t make too big of a fuss over eating or it creates too much pressure, and defense/offense position open up. We’re not playing that game. Instead we are trying to take the TEAM approach today. We will use every “mind over matter” advantage ala small portions on plate; cool or room temp NOT hot as it tends to make nausea worse; disguising non attractive food for colorful happy looking food; shakes shakes shakes and more shakes. U can blend up just about anything and make it taste like just about anything – I’m hoping.
It’s a non stop struggle almost a battle to get him to eat even 1 cheerio. This is the first time he has shut out food. – so it rocked our boat & his, yesterday unfortunately he is very weakened by now not only the chemo but also the lack of any food. It had taken from 9am-7pm yesterday to drink half of a protein shake (which is not enough).
Today when he wakes up we are going to keep calm and try to teach him more about Mind Over Matter. I’m taking it as a Good sign that right before he passed out on the couch yesterday after a short walk, he raised his fist in the air and proclaimed “take that cancer, your not getting me” and he punched his closed clinched fist in the air. I was so proud of him. I knew as he was passing out that today was going to be a better day, or least a better day of the mind and of taking big control back – TAKING CONTROL where you can, like trying to eat and exercise is essential for healing.
Like my dear family friend, Key West chiropractor Michael Norman who’s offer of an X-ray saved Nicky’s life, says :
“Step 1 one :Maximize the Mind!!!!!”
Forward thinking, forward moving, bless up/\
For those of you who are unable to attend a fundraiser, donations can be made directly to any First State Bank branch of the FL Keys in person by mentioning Wayne and/or Jamie Sorbelli and the account ending in 2487 or mail to :
Wayne Sorbelli (Nicky Fund 2487)
2520 Harris Ave.Apt 1
Key West. FL 33040
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
The entire extended Sorbelli family are VERY grateful to all our Key West & NEPA Pennsylvania family & friends who are following our lives, on Sorbelli.com & IslandGuitar.com helping us stay in touch & in tune. Our family music shop has stayed open with tons of help from our friends. Thank you David Warren, James King III, Shana Gaskill, Rusty Applebee, Beth Brown , Marilyn & Dean Borland & Briana Castillo. Sheila Keezer, Ted Shudak, Quint & Cathy Sorbelli. The Sechevich family. Penny Maun, Layla Laser, one million others.
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. Treatment plan for now is Thurs – Saturday in Miami children’s hospital every week until Jan 2016, then once a month for 2 years. So it’s going to be a long strange trip to say the least.
For those of you who are unable to attend a fundraiser, donations can be made directly to any First State Bank branch of the FL Keys in person by mentioning Wayne and/or Jamie Sorbelli and the account ending in 2487 or mail to :
Wayne Sorbelli (Nicky Fund 2487)
Harris Ave.Apt 1
Key West. FL 33040
Nicky & I are typing and loading pictures on Nicky’s own page on our Sorbelli family website at https://sorbelli.com/nicky/
OFFICIAL UP TO DATE LIST OF FUNDRAISRERS for Nicky Sorbelli: http://islandguitar.com/nicky-sorbelli-fundraiser/
To donate to Their Go Fund Me site: http://www.gofundme.com/uldcw0