The Space Shuttle

March 31st, 2011

One Last Wish

March 13th, 2011

Dear Friends,

It's been a while since we updated you on Tony.  He had to leave the rehab facility because his doctors felt that resuming the Avastin treatments were a higher priority.  The facility couldn't keep Tony as an inpatient while taking what amounts to a "bio-hazardous" chemical.  He is home now, getting 1 hour of rehab 3x a week.  I don't think I need to tell you, this isn't enough.  He hasn't really regained any strength, and because of a lack of progress, his mental and emotional state are declining.

One thing that has Tony of a mind to push thru is his one wish; to see the launch of the space shuttle next month.  Elaine has applied for a grant to get them there, kind of a 'Make a Wish" for adults, but whether or not that will come thru is anybody's guess.  We are hopeful that Tony will still be able to get in and out of a wheelchair so he can actually get on a plane and make the trip.

If you can, please consider another donation.  It may be the last trip for Tony.

Thanks, and keep the prayers coming!

Just one Dream...

February 21st, 2011

Dear Friends, not a good day today...here's a note from Elaine, a tiny bit of editing, but it's all Elaine...

the fun never ends.....we had an MRI appt for today, found out it was cancelled after we drove across town.  Was told the machine broke and they tried to call on our "cell" (tony's) but Tony forgot it at the doc last week when he went for chemo. So, we drove to that doc's office, but they were closed cause it's presidents day!!  All the time, Tony and I sobbed like babies. It's the first time Tony's "cracked" it was hard getting him up and out, and he feels like he just can't take it anymore. He cried to me "I'm dying, Elaine"......it broke my heart in a million pieces, and then to find no MRI, no getting his cell phone back, blah blah blah. Well, he really enjoyed the subway sandwich I bought him, got him home in to a clean bed and a bowl of ice cream so now he's drifting off into la la land. He was complaining of unbearable spasms and pain in his feet today, so, I gave him two percocet instead of one.

The one thing he did say that really struck me was that "there is no not getting to see that shuttle launch in April!!" He asked what day it was, I told him the 21st. He asked "January"? I am getting really worried he will be too weak to travel or worse not here to live his dream, but, if it's the last thing I ever try doing, it's to get him to see that damn space shuttle. 

I was hoping if you can add a few thank you's to for people who may not have donated cash, but were able to donate something just as meaningful:

we recieved checks in the mail, so would like to thank:

Linda and Tony Halvatzes, Mary and Paul Cinquemani, also to Anne Joseph (her bday today) thanking her for the use of her car and to Austin's dad, Bob Saunders for also lending us much needed transportation. To Iris Saxon, for the wheel chair ramp to our front door. To Larry Litchfields' daughter Valerie who spent some time with us, and took some amazing pictures of us for us to have and cherish and to eventually share with everyone. To our friends and family in New England for taking care of our home and our cats (and Austin while he was still there) To my father and my stepmom for provide oodles of moral support, being there & providing so much physical help when needed, and good food sent to the house too. To Maria Charles for visiting and bringing our favorite thing...Italian food...and to Steve Wright who visited Tony in the hospital many times to share his music therapy, and to share God's word with us to keep us inspired while we're on this difficult road.

ok I will let u know if I can thing of anyone else. for a bad day started, all of these thanks you make me realized how blessed we are, you are all at the top of the list, for those we are thankful for we love you!!! xoxoxo

The Long Haul

February 15th, 2011

Hi everyone, thanks for keeping up with our status reports.  Tony is being discharged from rehab today.  While this may appear as a good thing, it's complicated.  There have only been about 9 days of rehabilitation.  However, the oncologist advises that Tony must get started with the Avastin treatments.  These cannot be done while Tony is at inpatient rehab.  So, he is going home with Elaine, still having difficulty walking, even with a walker.  God willing, the progress he has made already will not be for naught.  The Avastin treatment is a 2 month series, so they will continue to struggle with no income for atleast that long.

In the meantime, Elaine is trying to get in home rehabilitation, but without the equipment, any progress will be slow.  Additionally, there are modifications they need to make in the house, such as grab bars in the bathroom.  She also is working on finding a doctor in New Hampshire and getting the insurance coverage transferred so they can eventually get back to the East Coast and back to work.

In the meantime, here is a link to ezine.com with several wonderful articles written by Tony.  These articles highligh his humor, intelligence, and interest in the world around him.  Enjoy.

http://ezinearticles.com/?expert=Tony_Kudalis

Who Decides When Enough Is Enough?

February 7th, 2011

Rehab. Excited to be here. Working hard at getting better. But how long will it take to get "there"?   It's different for everyone.  Elaine is trying to keep Tony's confidence level up, but it's difficult when they can't get any assurances from the insurance company that they will be covered for as long as it takes.  That's why we keep pushing here for our goal, so if they need an extra couple of days or weeks, they can fund it.  If you know someone who has been touched by cancer, pass on the link. Anyone who has been thru this ordeal will understand. 

Elaine and Tony would like to say a very special thank you to Uncle Gene, Barbara & Al Collura, Joey Hart, Susan & Clayton and Amber.  All folks who have made a contribution outside of this website.  There are many others who have made a contribution too, whether thru prayers, positive thinking, an encouraging phone call, there are so many, and thank you to each and every one.

Hope to post some rehab milestones this week, stay tuned!

Keep Smilin'

February 2nd, 2011

Hello Rehab!  Tony was transported to an acute rehabilitation facility last night.  Elaine is hoping for a minimum stay of two weeks, but, as usual will have to take what she can get out of the insurance companies.  Believe it or not, the chemo (Avastin) has to be suspended in rehab because chemo is eliminited from the body thru sweat and other bodily functions.  This is actually considered a bio hazard.  But it has been discussed and decided that the rehab should take priority.

Elaine and Tony would also like to make a point to thank all the angels who have sent notes, prepaid cards, checks and words of support, love and inspiration by mail.  Ironically, those notes sent to the address in Vegas until the last couple of days were forwarded to New Hampshire.  However, the up note is that Austin landed in Vegas today, mail in hand, so it's been a good day all around!

A Waiting Game or a Wasting Game?

February 1st, 2011

Tony is still languishing in the hospital, waiting for the insurance company to review the doctor's request to be moved to an acute rehab facility.  Just to give you an example of the frustrations of our medical insurance policies, Tony's doctor requested the cyberknife treatment on 1/13, it wasn't approved until 1/19.  The Avastin medication was supposed to start on 1/20.  It was originally denyed, but thanks to the doctor's persistance, it was finally approed on 1/27.  The Avastin should supplement the cyberknife (laser) treatment, but was 7 days late.  Rehab requested on 1/27, and still they wait.

This type of cancer can double in size in a week's time, which is why it is critical that these phases be considered an entire treatment, not individual steps.  Rehab is critical not only for physical mobility, but for mental health as well.  Elaine and Tony need to feel, if not see, that they are moving forward.

And of course, the longer the insurance stalls, the more the bills pile up.

We will keep everyone informed of any progress, and thank you all so much for your kind notes and inspiration.  Seeing how many friends they have goes farther than you know in keeping Elaine and Tony in a positive frame of mind.

Update on Tony...

January 27th, 2011

Tony has been admitted to the hospital yesterday.  His condition is fairly static at this point, however, the insurance company won't contribute to rehabilitation unless he is discharged directly from the hospital.  Never mind the fact that his legs no longer respond to what his brain tells them to do.  Or maybe it's that the signals from his brain aren't quite right anymore, or that he is so weak he can hardly move....In anycase, he needs rehab and this is the only way to obtain it.  As you can imagine, insurance is only going to pay for PART of the hospital stay.  That is why we need your help!  Thanks for keeping up with Tony and Elaine, we will keep you posted,  God Bless.