TPN Update

After another very frustrating day cutting through Red tape at Strong Memorial Hospital, Joe's central line was inserted at 3:30 pm. They decided to insert a central line in his chest instead of a pick line in his arm. Through this central line we will be able to feed him the nutrition that he sorely needs as well as draw blood and give him IV meds without having to stick him. His veins are not cooperating well these days and it takes multiple tries to get a good vein. Thus, while the central line did require some local meds, it will ultimately be better for him overall.

Since they did not get the line in early enough in the day, beginning the nutrition didn't happen! Excessive questioning and begging would not change their minds, thus he'll begin it tomorrow. He is getting IV fluids though as he is terribly dehydrated and losing weight pretty quickly. He'll come home with the central line intact and I will 'hook him up' daily for his nutrition feeding. The goal is to completely shut down the lymph system to heal the chylous ascities. He will probably be on the TPN for 4-6 weeks. This is paramount to move to his next set of treatments as well as his overall health. We want to get that stomach tube removed and start him on real live food again!

I believe he'll be released Friday at the earliest - and since he's in the bone marrow unit there's no fresh flowers or fresh fruits and vegetables allowed. They screen the visitors and washing up after entering the unit itself is a must. I believe a few days on the TPN will give Joe some much needed energy and help to get some pounds back on him.

Stem cell update- Rosalyn, Roxanne, Yvonne AND Michelle are all 6-on-6 antigen matches- all PERFECT matches if Joe should need the stem cell transplant. That is a blessing. Next steps will be physicals of his sisters to ensure that they are indeed good healthy donors. But, I am not going to think of this route until we've exhausted other avenues that are less invasive and less risky.

Thanks to all for your prayers and cards....

Love
Vicki, Gina & Tom

TPN Update

After 2 days of frustrating conversations with doctors, nurses and the like, we FINALLY got a bed in the bone marrow unit today at 4 pm. We'll be on the 8th floor 1200 unit (Green elevators) at Strong and hopefully yet today they will insert the pick line and begin TPN. I am not holding my breath though as it will be late in the day when he's processed and in his room.......

Wish us well!

Back into Strong Memorial

Today Joe is scheduled to be admitted to Strong for a pick line insertion and the beginning of TPN for his nutritional needs and to help heal the lymph system. The low fat diet is not healing the system as we had hoped and he is still filling with fluid.

So today he will be admitted back into the 6th floor 3400 unit for a few days to stabilize his feeding and then we'll be managing his care at home.

Thanks for the cards and letters - keep 'em coming! And thanks for the chicken dinner last night Fran!

Love
Vicki, Gina & Tom

Visit to Roswell

Yesterday we visited Roswell Cancer center in Buffalo, NY and had a consultation with Dr. Michael Wong. Visiting Roswell concerned me as I was unsure of what we would find, but the entire situation was positive from the moment we entered the building and were greeted by an associate to the end when the valet attendant delivered the Cassarino van to us at the door.

Our visit confirmed, by Dr Wong, that we are on the right track! He was very familiar with Joe's medical history and after answering all of our questions was able to give us a wonderful overview of Renal Cell Cancer and treatment options. He affirmed that we are on the right path with the Sutent pills daily and the interferon shots every other day. He told us to remain on this course of treatment for the duration (1 month on, 2 weeks off) and then either complete a set of scans or complete another course of treatment, and then re-scan. At this point we will know whether this course of treatment is working or not. If this course is NOT working, he will then be a candidate for high dose IL-2 at Roswell. Dr. Wong treats 6 patients each week with high dose IL-2 at Roswell versus Strong Memorial Hospital who treat 6 patients per year! Thus. if we get to the point that he is in need of changing his treatment from interferon to interleukin-2, we will have this treatment at Roswell under Dr. Wong's care.

Dr. Wong has only seen one patient with the chylous ascities that Joe has and also concurred that going to a TPN nutritional cycle for a short period of time may ba a better method to close the lymph system than what we're doing with the low fat diet. We are waiting for the nutritional folks at Strong Memorial Hospital to call us with an open bed and the time to get a pick line inserted into Joe and the proper mix to get Joe back on track nutritionally. He's lost about 20 pounds since this has happened.

Dr Wong did discuss the stem cell transplant with us but lead us to believe that the IL-2 treatments and/or the Interferon treatments, at this time, is a better option for us. We won't stop pursuing this avenue, but at this time, it's comforting to know that he concurs with Dr. Kohli about what is best for Joe.

Joe is resting at home today, pretty tired from our trek to Buffalo, and we are scheduled to see Dr. Kohli on Friday at 1 pm. In the meantime, Maureen is trying to get us into the hospital for the TPN admission - however -with the weekend coming and our past experience with Strong and weekend work - if it's not tomorrow, we'll wait until Monday. We are confident that once he is being fed via the TPN, he will regain some strength and the ascities will heal.

Keep your cards and well wishes coming - we feel the positive energy that is being directed our way!

Much love
Vicki, Gina and Tom

Quick notification of Blog Updates

Everyone who has vistited this Blog up to this point has been added to a list of email addresses that will automatically be notified whenever new information has been added.

I hope that you will find this convenient. Many people have been checking the Blog several times a day looking for new information about Joe's condition. Now you can be assured of knowing whenever there is new information available.

Oncologist visit update

We visited Dr Kohli yesterday. Only a few elements of Joe's blood work look to be moving in the wrong direction, however, Dr Kohli attributes that to the interfuron injections. His overall blood work does not look 'too terrible' in his words. He is watching a few attributes and will make changes to his treatment if they appear to be moving in the wrong direction. The goal is to get his lymph system to heal with the no-fat diet and to have his abdomen reduce significantly of the fluids that have collected again. Today the visiting nurse is draining his abdomen of fluid - they hope to drain 2 more liters of fluid. Joe continues to take interfuron shots every other day - with one week being 3 shots and the next being 4. He takes a Sutent pill daily. He is dealing with the side effects well. He continues to be on a strict no-fat and neutropenic diet, without complaint! He is also being well taken care of this week by Gina, a rather accomplished nurse!

In approximately one month Joe will have another set of cat scans to make a determination if the current treatment is working. "Stable" is OK, per Dr Kohli - the goal is to see no new tumor growth or metastases. If we see this, then we'll know that the interfuron is working. So, if the lymph system repairs well AND he is responding to the interfuron, then Joe will once again be a candidate for High Dose Interleukin-2 treatments! THAT IS THE GOAL! Door #2 is the stem cell transplant. The bone marrow unit is currently working with the samples from Joe's 4 matching sisters to see which DNA match is the most perfect. We should have those results in another week. We thank God that there were matching siblings - 4 f them! What a blessing!

Joe has received so many wonderful cards and thoughts in the mail - I cannot thank you all enough for your love and support. Please keep him in your prayers. Miracles happen - one will happen to Joe!

Much Love
Vicki, Gina & Tom

Preliminary Results are in!

Preliminary results show that 4 of Joe's sisters are potential 'good' matches for a stem cell transplant. Rosalyn, Roxanne, Yvonne & Michelle appear to be the best preliminary matches. More tests have to be completed to determine which of them are the closest to being perfect.

Today we see Dr Kohli for an update on his treatment plan. He is taking interfuron injections every other day and a Sutent pill daily. Side effects are in play, but he's doing better with the anti-nausea pills that he was prescribed.

Next Wednesday Paul, Maureen and I are taking Joe to see Dr. Wong at the Roswell Cancer Center in Buffalo for a second opinion/treatment options. Dr. Wong is a specialist in Renal Cell Cancer and we're hoping that he will be able to help.

Thank you for all of the cards and letters that Joe has been receiving - he is enjoying them so much. He is still on the no-fat and neutropenic diet, so food is still very restrictive.

Thank you also for the prayers that people are sending - we are praying for a miracle.

Love
Vicki

CANCER SUCKS!

That's the slogan on the nurse's buttons in Strong's oncology ward - CANCER SUCKS - it does. So, we ordered 25 of them - when you come over to visit - ask for one. It's our mantra.

Today we start the Sutent pills - we are praying that this and the interfuron will kill the disease. Maureen and Joe are working today to get all of the necessary information to the National Institute of Health in Maryland to be in line if he is in need of a stem cell transplant from one of his siblings.....out of 6 siblings we are confident and praying for many 6-on-6 perfect blood and antigen matches. We are blessed that all 6 of his siblings are ready to give whatever they have to make him healthy again. Joe's been a trooper with me being a fumbling "nurse wanna be"!

Cancer sucks. Pass it on.

Don't Quit
When things go wrong, as they sometimes will
When the road you're trudging seems all uphill
When the funds are low and the debts are high
And you want to smile, but you have to sigh

When care is pressing you down a bit
Rest, you must - but don't you quit
Life is queer with its twists and turns
As everyone of us sometimes learns

And many a failure turns about
When he might have won had he stuck it out
Don't give up, though the pace seems slow
You might succeed with another blow

Success is failure turned inside out, the silver tint of the clouds of doubt
And you never can tell how close you are, It may be near when it seems so far
So stick to the fight when you're hardest hit
It's when things seem worst, That you MUST NOT QUIT!

(Author Unknown)

Joe is home again!

Joe was released from Strong Memorial yesterday at 2 pm. He came home with an IV line in as he needs IV antibiotics for another 5 days. He is on an every-other-day regime of Sutent and Interfuron - given by yours truly - and he's tolerating them as predicted. He slept a lot yesterday and looks good this morning.

He cannot have any fresh fruits or fresh flowers around as he is neutropenic - and he is on a very restrictive diet. But, our goal is to get him stronger and stronger every day. Our next visit with Dr Kohli is Wednesday the 15th where we'll assess our treatment plan and he'll determine whether to continue or change it. Joe is breaking new ground here in Rochester taking the Sutent pills along with the interfuron.

There will be a nurse coming daily to check his vital signs and ensure that we're administering the medicines as planned. He is on pain meds as well as a multivitamin and special drinks to get protein to his body and ensure that he does not lose too much weight.

A huge thank you to Marsha Pulhamus for not only helping me get him to the car, but for coming over and explaining all of the medical jargon to me! It's pretty scary to give shots and flush out IV lines when you're not a trained medical professional, but she's giving me confidence and help.

Happy birthday today to Robin Pritchard! Happy birthday and bon voyage to Nanette as she and Joel leave for Mexico.

Thank you all for your cards and well wishes. Please keep your prayers coming!

Relief and other good news!

Today's procedure to drain Joe's belly was a great success. They got 3 liters of fluid! Imagine that! Its no wonder he couldn't eat. He had a full lunch in record time.

Tests show that Joe's remaining kidney is working just fine. Now that he can ingest a normal amount of food and liquid, it is working at its normal rate.

All of Joe's siblings were tested today. We should have the results by Thursday. They are looking for a sibling with the same blood type and a specific antigen. Hopefully, they will get two matches. This is the next step toward doing the stem cell transplant.

It looks like Joe will remain at Strong for 2-3 more days so that they can monitor his food/fluid intake and other metabolic functions.

All good news today.

Cards and letters

The Blog has been a great way for all of you to get your comments to Joe and Vicki.
Joe also loves your cards and letters, so keep them coming.

Until you hear otherwise, hold off sending flowers. The aromas can be overwhelming.

The Martuscello's
2 Shannon Crescent
Spencerport, NY 14559

Joe should be coming home in the next few days, if all goes as planned.

Belly fluid update

Joe is scheduled this morning for a procedure to insert a drain in his abdomen to relieve the build-up of fluid that has been bothering him for the past week. The drain will remain temporarily until his lymph system has repaired itself.

It appears that this accumulation of fluid is a result of the surgery not due to a malignant process. There may be a minor leak in one of his abdominal lymph vessels. Numerous lymph nodes, including some around the aorta , were removed during surgery on Feb 10th. The no-fat diet that he has been on this weekend is already helping him to feel better. In addition, he is on a neutropenic diet to avoid any possibility of infection. He can have no red meat, fresh fruits or vegetables. The nutritionist will meet with he and Vicki today to outline their recommendations for Joe's meals once he comes home.

Since Joe's immune system is compromised, he will wear a surgical mask whenever in someone's presence. Joe's sister, Michelle from Colorado and brother Bill from Rhode Island came to Rochester this weekend. All three will have blood tests on Monday to determine who has a good antigen and blood-type match to Joe for a possible stem cell transplant. (More about that as we learn more from the doctors.)

Joe will receive another Interferon treatment today and a drug called Sutent. ( SUTENT is a highly selective, multi-targeted tyrosine kinase inhibitor that starves tumors of blood and nutrients needed for growth and simultaneously kills cancer cells that make up tumors. )

Due to the presence of the abdominal fluid, Joe is no longer a candidate for the High Dose Interleukin-2 treatment (Administered over five days in the hospital with VERY SEVERE flu-like symptoms.) . However, the low dose Interferon that he is currently on has exactly the same success rate. He will endure milder form of the side effects for a longer period of time.

"Interferon is given to stimulate the body‚’s own immune system to fight some types of cancer. The exact way in which it works is not fully understood. It is thought to have a wide range of biological effects. It may do one or more of the following:

• slow down or stop cancer cells dividing
• reduce the ability of cancer cells to protect themselves from the immune system
• strengthen the body‚’s immune system."

Joe is ready and very willing to follow his doctors' recommendations to win this battle. Sure, he is going to feel lousy for the short-term, but he is determined to give this fight everything he has.

The words of encouragement from all of his friends are immensely valuable.

Good food not the cause of big belly

Joe has been trying to enjoy all of the great food that has been so generously supplied during the past few weeks. However, it has been increasingly more difficult for him to enjoy a meal due to a bloated feeling and acid reflux.

Wednesday's CAT scan revealed that his increasingly larger belly is due to an accumlation of fluid, not calories. Joe was admitted to Strong on Friday at noon. He waited patiently until 8PM for the procedure to relieve the pressure. Unfortunately, the procedure was only able to retrieve a small amount of fluid, enough for diagnostics, but not enough to give him some relief.

Vicki spent the night with him while he was adminstered his first dose of Interferon. This will hopefully stimulate his own immune system to kick into high gear and fight this monster.

Later today, another more advanced procedure is planned to relieve the pressure and fluid in his abdomen.

We have begun the process of seeing whether Joe will qualify for some of the clinical trials being conducted at the National Cancer Institute (National Institute of Health) in Bethesda, MD. This was suggested by his oncologist. They are doing cutting edge research on new drugs and therapies, like stem cell transplant, that may prove very beneficial for Joe. We will know much more in a couple of weeks once his case has been throughly reviewed.

Thank you for your prayers and well wishes. Keep them coming!

A minor set-back

Today Joe has had a minor set-back. He has been experiencing abdominal pain and pressure for about a week that has not cleared up with medicines or foods. He had a full cat scan yesterday as a starting baseline for the doctor but struggled to drink the fluid required for him. Today the doctor diagnosed that he has accumulated fluid in his abdomen. Tomorrow at 9 am he will be admitted into Strong Memorial Hospital to have the fluid sac drained and tested in the cytology lab. There is a chance that the fluid drained will contain cancer cells. If this is the case, there is a liklihood that he may be admitted and begin his IL-2 treatments a week ahead of when we anticipated them to begin.

Say a prayer that all turns out well! Paul or I will keep you updated as to his progress.

A Poem from Ann M

I've learned....That we should be glad God doesn't give us everything we ask for.
I've learned....That money doesn't buy class.
I've learned....That it's those small daily happenings that make life so spectacular.
I've learned...That under everyone's hard shell is someone who wants to be appreciated and loved
I've learned....That the Lord didn't do it all in one day. What makes me think I can?
I've learned....That to ignore the facts does not change the facts.
I've learned...That love, not time, heals all wounds.
I've learned...That the easiest way for me to grow as a person is to surround myself with people smarter than I am.
I've learned...That everyone you meet deserves to be greeted with a smile.
I've learned....That there's nothing sweeter than sleeping with your babies and feeling their breath on your cheeks.
I've learned...That no one is perfect until you fall in love with them.
I've learned....That life is tough, but I'm tougher!!
I've learned...That opportunities are never lost; someone will take the ones you miss.
I've learned....That when you harbor bitterness, happiness will dock elsewhere.
I've learned...That I wish I could have told those I cared about that I love them one more time before they passed away.
I've learned....That one should keep his words both soft and tender, because tomorrow he may have to eat them.
I've learned....That a smile is an inexpensive way to improve your looks.
I've learned....That I can't choose how I feel, but I can choose what I do about it.
I've learned....That when your newly born child holds your little finger in his little fist, that you're hooked for life.
I've learned....That everyone wants to live on top of the mountain, but all the happiness, and growth occurs while you' re climbing it.
I've learned...That the less time I have to work, the more things I get done

Thanks Ann for reminding us of what is important. I've learned that I have the very best family & friends in the world and I don't know what I would do without them.

"The bend in the road is not the end of the road unless you fail to make the turn"

Have a wonderful day
Love
Vicki