Cleveland Rocks!

Actually it is pretty cool here.

We arrived in Cleveland yesterday morning just after 9am.
Dean has his radiation treatment at HUP then we rushed off to the airport for a 7:30 flight.

Cleveland Clinic is top notch! We thought we had it good at HUP!
The staff and facility are absolutely amazing. All buildings are connected by skywalk and they are all about their patients and families. Think Disneyland of hospitals.  There is beautiful artwork, classical music ensembles playing in the lobby and free yoga! Seriously!??

We met with both the nuero-oncoligist and neurosurgeon yesterday and got the green light for the gamma procedure today. 3pm and all done appointments?

We decided to head to the Rock and Roll Hall of Fame!  Elvis to Eddy Vedder and everyone in between, topped of with a Bruce Springsteen exhibit on the top two floors!  It was a perfect ending to a very long day.

Geez… if were using vacation days…it might as well be fun!

Today was another early day, but it looks like we’ll be out of here soon. Heading over to have the docs here take a look at the oncology part of Dean’s treatment while were here.  I figure.. why not?!

8:30 flight home to Philly tonight…will update everyone again this weekend!

xxoo
Nic and Dean!

After a very long week and a half of phone calls and paperwork,  we are heading to Cleveland Clinic with the intention of completing the Gamma Knife treatment started here in Philly. We are flying out tomorrow morning after Deans radiation appointment (5:45 am!!!!!!) and returning Thursday. -Hoping to visit the R&R Hall of Fame in between!-no hockey! Procedure should be quick and painless! FIngers crossed! Ill be in touch! N

OK..

Aetna denied Pittsburg as it is an out of network hospital.
Seeing as we have no out of network coverage and the procedure costs upwards of $40K we are looking toward Cleveland Clinic.

Calls, emails and letters have been sent.
Fingers crossed for a quick approval and pre certification.

Everyone great here!
This weeks treatments went well and the girls got a wonderful surprise from Aunt Juls…Taylor Swift tickets! They were sooo excited and it was a wonderful gift to see their tiny lips singing along with each and every word.

Deano git in the water twice this week…once in LBI once in OC and his smile is contagious!

Stay tuned for more about Cleveland!
Well post as soon as we hear!!!!!

Hello All!Looks like were heading to Pittsburgh!
Hey- maybe we can catch Sid Crosby!
Just an update on the “situation”here at home.
Deans Gamma procedure left one tumor behind.  Due to the constraints of the machine in Philly and the size of his noggin (go figure)… the doctors could not get to the left cerebellum.Good luck? There’s a newer Gamma machine in Pitt that can get it…We have amazing contacts that led us to Dr. Lunsford at UPMC Presby…(ask me about the hockey theme someday) he certainly is the leader of the Gamma pack.
Bad Luck? The hospital there is not in our insurance network.  Dr. Lee our neurosurgeon at HUP is working diligently to deem this procedure-at that hospital-with Dr. Lunsford-medically necessary and to get it covered.

I tried calling once…clearly not my forte- insurance companies…thank goodness for the pros!

Dean is recovering well…just a few holes in his head, but a smile on his face. He spent the weekend running errands with his head bandaged…looking like a war criminal. I think he scared the wits out of the lady working the Home Depot checkout!

He’s got the Italians in this week at work so sure to lift his spirits and definitely guarantees a good lunch! Work trip to Singapore postponed- sorry Dave, no layover play date!

I’m plugging away just keeping organized…still teaching, still getting to my mat.

Kids are great! I’m just listening in on Sophia’s conversation about how cool it was to go to the hospital where her Daddy gets shot up with lasers! She actually asked the doctor,”When he’s fixed will he be able to write in cursive???!!!!”
Just priceless!!!

Thank you all for your love and prayers…
Keep ’em coming!
xx
Nic and Dean

Hey Guys!

Sitting here in the Pennsy lounge waiting on boy wonder who is currently unavailable…

He’s neck deep in the Gamma Knife Chamber having the fruit loops zapped out of him. (Granted I’m punchy from lack of sleep…but we did refer to the MRI as a test to see if Dad had any fruit loops on his brian…Sophia prefers the term lint balls…)

Funny where life takes you- just about 10 years ago we entered the same doors on 8th street to bring our GLove into this world! Midwives Birthing Suites are just above the Gamma Center…

All kidding aside, the procedure is going well. Just got an update from the nurses….they are so good here!

Dean has a lightweight metal frame attached to his cranium (just temporary!) That will allow the doctors to keep him from moving while being treated…yes, I did take photos….

The procedure will take a few hours…and then he will be in recovery for a bit.  Immediate side affects? Four small holes to the head…covered with a bandaid for the weekend…no extra cranial pressure for a few days-running, yoga, no risk of head trauma for the weekend-surfing. Sorry early Spring swell…he’ll have to take a rain-check!

Headed to HUP for a quick Radiation treatment this afternoon, then home to recoup.

I’m sure there will be a Dean sighting out on the soccer field this week…if not sooner.

In the meantime… in my spare time…I set up this great Caring Bridge website for Dean.  It is a much easier way to keep everyone up to speed with the happenings at 25 Centre….

In addition, I don’t have to worry that I missed someone in my email.

Love to all!

xx N

“The suns gonna’ rise in a mile”

This last week is unlike any week I have ever imagined.
Your outpouring of love and support has lightened our load and kept us smiling.

Somehow, with all of the phone calls and texts I have been sending over the past few days, I still feel completely out of touch with each of you.

I suppose it’s because I haven’t been hanging around at drop off or pick up? Maybe it’s the Dr’s appointments, the testing? I feel like we are floating in a dream state…Where everything is happening around you and you have no control….go figure.

Each day when we awake we know we’ll have a big day ahead of us. Somehow, we can move through it. There is the strength of the army of Angels that surround us. Guiding our path…shining their light.  Providing beautiful dinners and countless errands.  Household basics and laundry help.

Honestly we could not get through this without you!

This past week we have been inundated with information – both emotional and medical.
We have done our best to sort through it and have been pretty balanced in what we do with our knowledge.  Dean’s doctor was impressed by my four-color flow chart that which explains his treatment plan.  What can I say? We both learn best visually.

After a thorough round of physician consults and a team of A+ Doc’s it looks as if we have a solid treatment plan.  Everyone we meet is touched by Dean’s case and has literally jumped through hoops to get him going- a precedent that was set by our AMAZING Family Doc, Kevin Norton.  He insisted Dean get the best care, with the best team ASAP.  I don’t know where we would be in this process if we didn’t have him. Truly-Angel #1.

Dean’s primary treatment will take place at HUP in Philadelphia. We have a terrific team there, the best crew, with a warm, concerned, bedside manner that has Dean and I knowing they truly do care- and that they will do everything in their power to see that he gets the best care out there.

The treatment plans looks like this:

Beginning 3/8
Monday through Friday for 6 weeks
Directed Radiation to the lung mass-aimed at reducing it in size and controlling the clotting.

Beginning 3/10
Once every 3 weeks-for 6 cycles-about June 25th
Systemic Chemotherapy to treat any other masses including the nodules in his lungs and possible kidney mass.

Friday 3/12
Gamma Knife  Procedure to the brain
This is non surgical directed radiation treatment done at Pennsylvania Hospital.  A cutting edge procedure done in Philadelphia on one of the few machines in the country!
This is a one day procedure.

Currently- the Doc’s at MDAnderson in Texas are reviewing his case…thanks to some friends who are very well connected down there! Thank You Angels! The miracles never cease…The Doctor with Dean’s file happens to be personal friends with Dr. Langer, our guy here in Philly. How often do your first and second opinion happen to be FRIENDS!!!???

Each and every Doc has told Dean to keep up his normal routines regarding running, yoga, surfing, soccer work- until and if he feels he is too tired from the treatment.
Good thing- since he ran, surfed and went to yoga this past weekend! To quote Lisa…”Seriously?- he is unstoppable!”

Kids are amazing…and feeling like lucky little girls, new basemnet, Disney, getting to have all these week day play dates!
Anyone who knows me knows I am all business all week.  Play dates only on Friday! Thank you, each of you for helping with the girls and making sure they get everything they need while we are seeing the doctors! I cannot begin to tell you how much that means to us!

Sooooooo. That’s the scoop here in The Cucinotta House this week.
Keep the emails and text messages most importantly the prayers coming. They really do lift us.

I’ll keep the updates flowing. Promise.
Blessings to you all!
Nic and Dean

Dearest Friends and Angels, I cannot begin to wrap my arms around the tremendous gift you have all given to our family. The outpouring of love and support has been overwhelming. Please forgive me for the delay in thanking each and every one of you personally. It has been a tremendous week of gratitude mixed with feelings of sadness as well as confusion as to why we are all having to go through this. Our community of family and friends has lifted our hearts and touched us in so many ways. The basement makeover was totally over the top. Dean, myself and the girls are so truly grateful. My biggest fear through all of this is that my children would lose their innocence. As a parent you want to protect your children. Shield them from sadness and worry. My girls have been in that basement every waking moment since we returned from Disney. I no longer am shooing them off to catch up with Dean, have a conversation with our parents or a friend, to send an update. They are happy there, and so well protected. It is PERFECT, and will prove to be the saving grace through all of this. The meals and errands have been terrific…thank you all. It has become an adventure of sorts…when we pull up and see a dinner delivery.. “What do you think it is?’, they wonder. I have a pile of containers to return. And Wendy- I have your pot. WIll get them round over the weekend. With the utmost gratitude to all of our angels, Blessings to you and your children, Nicole, Dean, Gianna and Sophia

Hi There!
Just an update on todays meeting with the Medical Oncologist (thanks for that Lupo)
Dr. Corey Langer is wonderful, brilliant and very human.
After an extensive conversation it seems a though we have come up with a treatment plan.

Both Langer and Rengan fell the best course of treatment will begin immediately, as in Monday.
He will be under Dr Rengans care for Gamma Knife radiation aimed at reducing teh size and controlling the tumors in the brain.
This is a one session treatment and can be followed by additional treatments if necessary.

SImultaneously, Dr Langer will treat dean with systemic chemotherapy. This will target the cancer cells in the remainder of the blood.

The radiation will begin on Monday, and will require 5 days of time for 6 weeks.
The Chemotherapy will begin next friday, the good news is that although a higher dose, they’ll space them out every three weeks!!!!!
It looks like we will go 6 cycles-done just in time for summer!!

We are very comfortable with he doc’s at HUP. We will begin treatment and send Deans films off for a second and third opinion. Probably Sloane and MD Anderson.
Dean is in good spirits, I am bushed.
Heading to bed…
More tomorrow
xx
N

Hi all,
Today we met with Dr. Rengen at HUP. He is the radiation oncologist who will most likely be treating Dean he will work hand in hand with Dr. Langer who we will see tomorrow. The facility there is terrific. It is state of the art and the folks there are wonderful.  They have a ton of integrative medicine resources for us there (nutritionist, social worker, reiki practitioners and the like) its so easy to get to and close to both work and home.
It looks like they are going to start his course of treatment ASAP…possibly this week and it will last 4-6 weeks the first go around.
The primary concerns are treating the current brain tumors with radiation to avoid any neuro interference and to treat the larger mass in his lungs to stop any clotting.
Chemotherapy will treat the other sites, and MAY be able to be administered simultaneously. FIngers crossed.
Thee are several different protocols being considered and we should know more by Thursday am.
Dean is currently back in the office…go figure… and I am juggling this email with homework help and after school snacks.
Kids are dying to go down to their new basement hangout and hang-out…so let me get them moving! I just wanted to update everyone on today’s report.
Sorry for the brevity and lack of details…like I said, well should have a full comprehensive plan by late tomorrow.
Until then…keep praying!
We love you all!
xx
NDGS