Feeling better today!

Today Joe is feeling much better- stronger and is eating more. He has not lost any weight since he's been in here - which is a good thing - and he is definately getting stronger with the antibiotics.

Last night we met with Dr Jones and the thorasic team. Their plan was to get another CT scan of his chest to see where the fluid was accumulating and then place a catheter drain in each side, separately, to drain the fluid completely and then place some talc in the pleural space. The talc will create friction between the lung itself and the chest wall. This way, there can be no additional fluid build up around the lungs. When asked where the fluid goes - the doc replied - "I don't know!". So off he went for his chest CT. After about an hour he returned victorious - they got not only the chest CT but -a head CT as well.

This morning the team came in and said that the head CT shows no tumors - which is good - but the chest CT shows additional lung tumors and the wall of the lung is thickening. I asked Dr Kohli and Dr Lyman if they could postpone the lung drain and talc procedure to do a round of chemotherapy. We discussed the pros and cons of doing chemo- side effects and continued immuno suppressed - but Joe decided that he wants to give the chemo a shot. The idea is to try to stop the cancer and then address the lungs. Continuing on the path of no chemo or cancer treatment leaves Joe's cancer running rampant throughout his body.

While Dr Kohli does not agree with Joe's decision, he agreed to follow-up and give the chemo a try. He will be writing the orders and hopefully, tomorrow, will be the day for the 24 hour infusion. He will most likely be in the hospital for at least one more week.

Joe told me that he feels energized to start a regime that, while may be tough, will at least be proactive. He's been pretty defeated since Dr Amato told us that the Trovax and IL-2 was not working.

I have been speaking to Dr Amato's office daily and they are 100% with us to have Joe try the chemotherapy.

So - positive prayers for this to work - the goal is to interrupt the growth cycle of cancer cells and get Joe some medicine to reverse the cancer.

We are very hopeful that this procedure will be successful. I know that there are many out there who disagree - but I ask that you please support Joe, Gina, Tom and I with this decision. It is an incredibly difficult one to make and we need all of the support that we can get. To do nothing would be to say that Joe was ready to die - and guess what - He is not.

With renewed hope, because that gets us through the day

Love
Vicki, Gina and Tom

Hospital Update

Yesterday was not a bad day for Joe! His pain level is decreasing and he said he felt better. He is still pretty weak and his breathing is not great - he is still on oxygen. He had another EKG and Echocardiogram yesterday to determine if his heart is functioning properly as his heart rate is pretty high. All tests came back without issue. His ultrasounds on Tuesday showed that his internal organs are working well - so while there are cancer cells around his organs, they are not in them. The lungs still appear to be the problem.

Today they are going to assess whether they can insert a pic line in his arm for continued IV antiobiotcs as the docs want another 10 days of them infused. This pic line can also be used for the chemotherapy that he wants to try as long as his blood levels are acceptable. Dr Jones' office was suppose to see him regarding the fluid around his lungs but did not come up yesterday. The attending will contact her again today to see if they wish to pull additional fluid from the lung space to try to ease Joe's breathing. The fluid did not test to be cancerous and they belive it to be chylous fluid - not fluid leaking from lung tumors.

Today Dr Lyman and the team should be able to determine when Joe can come home. The attending physician promised to see the home health care department to get us additional nursing help and oxygen delivered to the house. If approved, he will have his chemo in the hospital as previously planned. Joe planed to talk to Dr Kohli yesterday - however - Dr Kohli did not visit with him.

But it was a good day - I went up at 1 pm and warmed him up his pasta dinner and along with his 20 below cocoa that he called Bill to get for him, he was a happy camper. I left to watch the Rangers/Athena game (Rangers won!) and video'd the game for Joe to see. Tom, Kate and I came back to the hospital after the game and he and Tom did a recap of the entire game - play by play! Kate brought cookies, so he happily munched cookies and watched the game.

He gets a little stronger every day, takes a little less pain medication and is more alert. We hope to get him home and resting more comfortably soon!

Love
Vicki, Gina & Tom

Infection update

Joe remains in Strong Memorial hospital on day 6. He is doing much better though and gets a little better every day. He is having trouble getting a full breath and the tap on the lung pleural space really did little to help this issue. Most likely he will come home with oxygen. Because he has been experiencing so much pain, yesterday afternoon he went for an ultrasound of his liver, pancrease, gall bladder and bowels. We have not heard the results of them yet. I arrived at the hospital while Joe was in ultrasound. My brother-in-law Bill was able to stay with him during the whole procedure. Joe arrived back in the room at 4 pm and shortly after, Bill came in. Apparently he was dispatched to get Joe a "20 below zero cocoa" drink!! Apparently he was not only thirsty but starving. Bill had ordered him lunch which was also waiting in the room. They both told me about the procedure, drank their cocoa and Joe picked a little at his lunch.

Dr Kohli came in a little while later and said that he would be looking at the ultrasound and get back to us today as to what they found. The head CT that Joe had, while blurry, did not indicate any tumors in the brain (YEAH!) or issues with blood clots or swelling. Hopefully today we will know more. Dr Kohli thought he looked much better than he was and said he had to discuss with the team how and when to get Joe home.

Yesterday they also had to change the IV line in his arm as it had clogged. Apparently Joe slept through most of the procedure!

I have spoken to him this morning and he said he had a better night's sleep than the previous night and was feeling better - less pain in his gut and in his back. He was going to order breakfast and I told him I would see him at noon.

Joe wants to talk to Dr Kohli about reinserting a central line and still giving the chemo a try. Last night before I left we discussed his options and he is still wanting to give this a shot. I told him that I would make it happen.

Thanks to all for - - everything!

With continued hope,
Vicki, Gina & Tom

Infection Update

Joe remains in Strong Memorial hospital fighting a staff infection. He is on the 6th floor, 3400 unit, room 27. He can have visitors, but tires easily.

On Sunday afternoon they removed his central line as it also is infected. They are keeping the abdominal catheter in place at this time as they do not believe that this line is a problem. The staph infection has invaded his blood stream along with his urine and abdominal fluid. Yesterday afternoon they once again tapped his left lung pleural space and removed a liter of fluid from around it to help ease his breathing. They also want to check the fluid to see if the staph infection is present there. Joe is on oxygen at this time as he cannot sustain the proper O2 level without it. He is in a great deal of abdominal, chest and back pain. He will stay on antibiotics for 10 days, when they will assess if he can have his central line reinserted or a pic line inserted so that he may have a shot at the chemo treatment. Without the central or pic line, they are unable to administer the chemotherapy. At this point, time is not on our side.

He has recovered from the confusion state that he was in and has returned to his normal humorous self. This is a huge relief!!! This morning, however, he said he had a rough night with pain. The procedure to removed the fluid is painful and he is struggling with the site pain.

Gina will be sitting with him this morning before she goes back to school and then Bill will sit with him until I get there this afternoon.

I do not believe that he will be released before Monday of next week.

Thanks to all for your support and help. Colleen, Sue, Fran, Silvana , Rose - thanks for bringing food to the hospital and my house. Roseanne & Dominic - the card and generous gift you gave me at the game made me cry. We are truly blessed to have you in our lives.

Thank you to my sister Toni and Bill. They came to the hospital to visit with Jamie and Amanda and were able to make us all smile. Thanks for coming to Mrs Cassarino's funeral with me and for helping to keep me sane. I know that I don't say thank you enough for all that you do, but you know how much I love you all.

Keep praying for our miracle!

Much love,
Vicki, Gina & Tom

In the Hospital

Well, it's been a very scary 72 hours.

Thursday morning my dad took Joe to Strong Radiation oncology for a back x-ray and appointment with Dr Chen. He came home and was very tired, thus slept the entire afternoon. When I returned home from work we both went to Tom's soccer game - and he was fine - a little chilly because the night cooled down -but otherwise himself. At 2 am he woke up very confused and disoriented -not knowing who any of us were, himself included, and in a great deal of discomfort - not pain - but discomfort. He kept saying he had to continue to go to the bathroom. That should have been my first clue as to an infection, but because he was so disoriented, I believed him to be over tired -and thus I watched him through a very restless night. He began talking gibberish at 3 am and I finally gave him some additional pain meds to get him to relax and go to sleep. Sleep finally came at 4:30 am, however, upon waking at 6:30 he was no better- actually worse. He didn't know who Tom was or anything simple. He was clearly agitated and confused. I sent Tom off to school and called our visiting nurse and Joe's sister Roxanne, who he had been talking to and calling since about 3 am. She and Nanette told me that they would be here to help at 10 am. I tried to wait for them, and Dr Kohli's office - but he was getting worse by the moment so I called an ambulance.
Joe was admitted into the ED at 10 am and they began a series of tests to check for everything from infection to brain tumors. Gina came home and got Tom from school. Joe didn't know either of them or his sisters, or Paul or Maureen when they came back. Father Werth visited and gave Joe the anointing of the sick - Father Werth married Joe and I, and baptized Gina. Joe got admitted into 6-3400 (Oncology unit) at 6:30 pm and we were greeted from ED by our favorite nurse Jack and the nurse manager Patty. They, along with the entire Strong staff has been wonderful. About 9 pm Friday night the docs began a regime of antibiotics, believing he had peritonitis again, or another infection. "Stuff" was still growing in the lab to determine his exact infection. We had yet another rough night - restless and agitated. He still did not know where he was or who any of us were. In the morning he was a little better - knew me and himself, and when the kids walked into the room, he knew them. What a relief! They attempted a second brain scan, but Joe refused to lie still for it, so at this point we have no idea what may be going on inside his brain. However, late yesterday afternoon the infectious disease team told me that he is 'growing bugs all over' - blood - abdominal fluid - urine - and that they believe him to be on the correct medicine. They have ruled out meningitis and a brain swell, however, do want to see if there are tumors on his brain.

Yesterday afternoon he visited with his mom and sister Yvonne and Fred, and Rose and Lou Petrella - he knew them all. My dad came up and apparently he was sleeping - I ran home to catch a much needed shower! Last night he ate minimally but did know Ann and Gene when they came up and when I left at 10 pm he was finally, sleeping soundly. The hospital appointed a sitter for him overnight so that I could come home and get some rest.

So - I am headed back to the hospital and then to Paul's mom's funeral service today. My brother -in-law Bill will sit with Joe while Gina, Tom and I pay our respects to Mrs. Cassarino. I am hoping that he is better this morning. He was improving over the course of yesterday.

He is still pretty weak and has not eaten much. He is on oxygen because his O2 levels are low, but his vitals signs are strong.

I hope to see Dr Kohli today to discuss if he believes we can start chemo. Without it, the cancer will continue to grow. With it, we have hope.

Thanks to all for your help and love. Thanks to the Vadas family for cutting my lawn! Thanks Rose and Louie for the food - you fed us all! Thanks to Rox, Nan, Yvonne, Fred and mom for visiting. Thanks to the Pettinaro's for taking in Tom, and Thanks Lucy for keeping Tom safe and OK at school Friday for me.

With continued hope for a stronger Joe...

Love,
Vicki, Gina & Tom

Chemo update

Yesterday Joe went to Strong and had an echocardiogram to ensure that his heart is healthy enough to withstand the chemotherapy treatments. All came out well there - his heart is strong and healthy. We all know that his heart is large and giving. Now we need to get the rest of him that way! He received 2 units of blood in an attempt to try to get his counts high enough so that he can handle the chemotherapy treatments. At this point, Dr Kohli does not want to proceed until his blood counts rise. Thanks Bill, for taking him yesterday - Joe ate well yesterday - rivaling Tom in his calorie count!

Today Joe is going back to the radiology department for a consultation with Dr Chen to have a few radiation treatments on his back as he is experiencing a lot of pain in that area. The radiation will not be curative, but perhaps will relieve some of the pressure from the tumors and give him additional pain relief.

Friday at 4 pm we will consult again with Dr Kohli to see if Joe's blood counts are high enough to proceed next week with the chemo. I pray that he is strong enough to withstand it. He wants to try it - wants to fight - we need to get his body to come to the party!

Thanks mom, for the money that you sent to us - we appreciate your generosity. Thanks also to Linda and Tony for the generous gift that you sent to us as well.

Joe's friend Brian Geer is a magician who has been wanting to have a benefit for Joe to help us financially as we continue to travel to Houston for Joe's care. My sister Toni along with a host of friends is working on the Martuscello March against Cancer. While we are just in the planning phase, I pray that Joe will be well enough to continue to travel to Houston and allow Dr Amato the time he needs to help us. If this benefit does not happen, please know that we are so grateful for everyone involved in helping us generate the funds to continue to fight. Words cannot express our gratitude and love for your continued never ending support.

Patty - I am adding the quote you sent to me yesterday. Thanks for the inspiration.

If, when faced with the bad, when told everything is futile, you can still look up and end the conversation with the phrase... "yeah....BUT.." then you still have hope. Never lose hope

We will never lose hope. For it's hope and faith that is getting us through each day. All of the prayers that are being said for Joe, the support and love from our family and friends, the support that I get at work here every day from Chuck, Tam, David, Jeanne, Yvette, Julie, Danielle and each of my peers and employees - it helps me to go on yet another day. Your love and concern has made a big difference in guiding us through the journey that we are on. Thank you. I hope, someday, I can repay the generosity and support that has been given to me tenfold.

Embrace every day - life is precious.

With love and continued hope,
Vicki, Gina & Tom

New treatment update

Today was NOT the day to see Dr Kohli - he was unable to schedule him in the clinic and thus did not receive either the blood transfusion or the chemotherapy. We did, however, schedule everything.

Tomorrow at 8:30 am he will go to the clinic for blood typing and crossing. This is required before he gets any transfusion. He will then go to the basement for an echocardiogram. Before Dr Kohli administers any chemotherapy he wants to make sure that Joe's heart is functioning properly. Apparently the Andriamycin can be toxic to the heart. Joe was required to have heart tests before his IL-2 treatment, so, everything should be OK. He then will get 2 units of blood. Dr Kohli will have a consultation with him and set up the chemotherapy which, unfortunately, cannot be done at home but as an inpatient in Strong. When he and I discussed this he told me that we in Rochester do not have the technology that Houston has to administer the drugs at home, rather they have to be administered as an inpatient. Thus, Joe will be in Strong weeks 1,3,5 & 7 to have both chemo drugs given. He'll most likely be there 2 days. What am I talking about - this is Strong! Give it 3-4 days! ;-) While it bothers me that he will be in the hospital, the visiting nurse today told me that it is best for him to have it administered there if any complications arise. It is my best guess that he will be admitted on Monday the 24th for his first treatment.

I pray that he will tolerate the meds and that they will work to kill the cancer cells. I pray that in 8 weeks we'll be seeing Dr Amato's smiling face again - only this time with good news.

I took a ride around Spencerport and delivered dishes today - Anderson, Ferrante, Potter, Pecorino and Kwiatkowski families - thank you for your delicious foods. I trust you found your dishes and containers on your front step! I visited with Scott and Cindy for awhile today - Scott is looking good - strong - and maintaining a great attitude toward his battle. Together, the 4 of us - we'll fight this - and lend strength back and forth as it's needed - to keep Joe and Scott healthy.

This has been a tremendously difficult week - and it's only Tuesday! Thank you, all, for your support and love. Without it we would not be as strong.

With continued hope for a better tomorrow
Vicki, Gina & Tom

Heavy Hearts

It is with a heavy heart that I am writing this post. Thanks so much to Paul for posting for me last night as I knew folks were wondering the results of Joe's CT scans. It was too hard to call - and no internet was accessible. We were so excited for this 8 week update - Joe had been looking and feeling better for so many of the 8 weeks - alas - the last 2 weeks have been pretty brutal. First the blood clot - then the coughing - followed by the fluid around the lungs - now tough news from Dr Amato.

The fluid in his lungs and collecting in his legs is a result of tumor load. He is unable to lie flat because the tumor growth in and around his lungs are suffocating them - thus he has to sleep and continue to be upright. The lymph system appears to have multiple places of new cancer growth, and like Paul commented, he has another mass where the kidney was removed. Each CT scan showed great additional tumor growth - where there was none in June. None of this was good news.

As always, the doctor has a plan as do we. First we will absorb the news, learn about and schedule in the new treatment plan, and forge ahead. This is no time to stop fighting - in fact - it's time to pull out all the stops! So, together, we will fight. We plan to see Dr Kohli today and schedule, or hopefully, begin his treatment. The medicine that Dr Amato has Joe on will be administered here in Rochester at home. His plan is to monitor him from Houston through Dr Kohli and I - and meet us back in Houston in 8 weeks. He told us that if Joe is well enough to travel and he sees us in the waiting room in 8 weeks he will know that the chemo - while a tough treatment - has stopped the cancer growth. We will then resume another trial, in Houston, to continue to kill the cancer beast. Joe will most likely spend the day in the clinic today- getting 2 units of blood and then getting hooked up to his Adriamycin pump. After that 24 hour infusion is completed then he will get a 1 hour infusion of Gemcitabine, most likely in the clinic at Strong. Blood work has to be done 2 times per week to ensure that his platelet and white/red cells counts are doing OK.

Adriamycin - also known as Doroubicin - is a type of antibiotic that is used only in cancer chemotherapy. It slows or stops the growth of cancer cells in the body.

Gemcitabine belongs to the group of medicines called antimetabolites. It interferes with the growth of cancer cells, which are eventually destroyed. Since the growth of normal cells may also be affected by the medicine, other effects will also occur. While it is used to treat many cancers, Dr Amato is using it because of the sarcomatoid features of Joe's clear cell Renal cancer - which is most likely the reason that all of the medicines he has taken thus far have not worked- and the cancer grew right around it. Joe has a 30-50% chance that this chemotherapy will stop or severely halt the growth of cancer so that Dr Amato can again try for a cure.

Yes - he will be sick. Yes - he will lose his hair. Again. But it will grow back - again. Yes - he has to stay on the Lovenox shots twice per day. Yes - he will get his Procrit shots weekly instead of bi-monthly.

So today we begin not only a fight - but a war. And there can be only 1 winner in a war - so we are waging our lives - literally - on winning this one.

Thanks to Maureen for keeping me together yesterday and through the long tough waiting period over the weekend. Thanks to the Pettinaro's who literally took Tom in nightly. Thanks to Toni for cooking for the kids over the weekend.

It is going to be a tough road - but together we can make Joe tougher. We have to. I will find a way.

Love,
Vicki

The news we didn't want to get.

Vicki is unable to get a wireless connection where she is in Houston and has asked me to pass along the latest news. (Vicki, Joe and Maureen are due to arrive around midnight from Houston.)

Dr. Amato has informed Joe that he has had extensive growth of his disease during the past 8 weeks, including a 3-4 cm mass where his left kidney used to be. He has numerous growths in his lungs and lymph system. It appears that none of the treatments, the Sutent, Trovax nor IL-2 have had any significiant effect on Joe's disease. These treatments were designed to inhibit the tumor's ability to nourish itself (Sutent) or stimulate Joe's own immune system to fight off the cancer (Trovax and IL-2).

Joe will begin a serious chemotherapy regimen tomorrow under Dr. Kohli's care. Right now, there is no longer any need to travel to Houston. Joe will be treated with Gencitabine (One hour per week) and Adriamycin ( One 24-hr dose every two weeks) at Strong Memorial Hosptial. These drugs are designed to intefere with the cancer cell's ability to divide and repair themselves.

Dr. Amato says that studies have shown that patients previously treated with IL-2 have a slightly better chance of responding to these therapies than patients who haven't tried IL-2. He says that we will know in a matter of a few weeks if Joe is going to respond.

Our love and prayers have lifted Joe, Vicki, Gina and Tommy for these past 9 months. We won't let them down now. They need our love more than ever.

A sunny day in Houston!

It's been a wonderfully warm sunny day here in Houston. Last night Joanie called - our clinical research trial administrator - and told us that Joe's blood work is still in the tank and wants him to have 2 more units of blood. We tried to get him into Methodist today to have it done, but we were not successful. He will have 2 units of blood given to him in Amato's office 8 am Monday morning to help boost his blood levels.

So today has been one of peaceful rest - in the sunshine at the pool - and in the room. Maureen and I spent a few hours just driving around Texas, exploring, finding quaint shops that we both love to browse. She found a backpack for her great-nephew and yet another Vera Bradley purse (Yes, she is obsessed). We had great fun looking at all of the 'stuff' in the store. I found unique things for Gina and Katie! :-)

Tomorrow will be yet another day of waiting - then we're going to be heading to the office for our news. Joe has been pretty tired and has been just resting - and we're trying our best to keep him comfortable (his feet are pretty swollen) and not nervous about whatever we hear on Monday.

So - send positive vibes our way - and thanks Scott for sending Joe all of your strength. You are truly an amazing person. The news will guide us to our next journey - either the same 8 week cycle of Trovax & IL-2 or a new path for Joe's best chance at survival and cure.

Thank you for all your support,

With Hope and prayers for good news on Monday
Vicki

In Houston!

Here I sit in Dr Amato's waiting room - Joe and Maureen are comfortably sleeping in recliners while I am logged in and doing a little work - a lot of reading - and quiet retrospect. The office is pretty quiet today - it's Friday and they only have clinic hours as Dr A does his research on Fridays. I pray that he has the proverbial light bulb go on over his or one of his research assistant's heads while they are learning about Kidney Cancer. I just spent some time talking in my best Spanish to a woman whose son is ill and has been treated here at the clinic. They seem to be here as often as we are and both she and her son have been friendly to Joe and I. The office waiting room is like a social circle - people share stories and lend support to one another. When she walked in I rose to meet her and asked her how Carlos was doing - he has passed away. Seems this beast called cancer has taken another life - a young life - and I grieve for his mother.

Joe had his blood and urine workup done this morning. We're waiting here for 3:30 to take him for his CT scans. Joe is pretty tired and wants to rest - so we'll go to the hotel and let him rest after he's done.

We are praying that the outcome is positive and that the Trovax and IL-2 are working.

With hope and continued prayer
Vicki

Fluid removed today

Today Joe had quite a busy day! In the clinic at Strong they removed 1.2 liters of fluid from the pleural space around his left lung. There is fluid around the right lung, however it is minimal. The process began with having some blood work first completed, the fluid removed, a chest X-Ray (to make sure that they didn't puncture the lung - good thinking huh?! :-) ), then a blood transfusion. He's still very anemic and Dr Kohli thought that the blood transfusion would be a good thing to do before we travel to Houston. The fluid removal did not take too long (20 minutes total) but his back is pretty sore from the needle insertion. He described the procedure as uncomfortable, but he did experience "lightening pain" in his chest area periodically as they removed the fluid. He had quite a coughing fit afterwards which the nurse said is normal, because the lungs are expanding. We will have to watch him carefully to see if the fluid reaccumulates. They sent the fluid to cytology for culture and to determine if there are cancer cells present. The fluid could be bacterial (pneumonia or fungal) which antibiotics will cure.

We ended this long tough day with dinner at the Olive Garden with the Cassarinos! It was a nice way to end a pretty stressful day.

We are now home, and he's doing well - tired - but well. He should be able to lie down and have less trouble breathing. He was given a breathingdevice to help him expand his lungs - he is suppose to use it once every hour - to help open the lungs and keep them clear from foreign objects.

Tomorrow at 8 am he will be going back to the clinic for another blood transfusion. While it sounds bad, he had a transfusion in Houston in July and felt much better afterward - more energy and less tired. He's only had one shot of the Procrit medicine to help aleviate the anemia .

Pending no issues with his lungs and/or transfusion, we are leaving Friday morning at 6 am for Houston. Head, Chest, Abdominal and Pelvic CT scans are going to be completed on Friday afternoon. On Monday morning we see Dr Amato with his results, and either begin another regime of Trovax/IL-2 or start another protocol. We plan to be home Monday night. Please send good healing/cancer regression thoughts to us as we travel to Houston! Thank you to Mrs Rowen for paying for our hotel room. The generosity of our family and friends has been overwhelming. We are grateful for your help!

Gina will be coming home to spend the weekend with Tom keeping the home fires burning! Friday the boys play soccer at Penfield - GO RANGERS - we know you're ready for a win!!

Love,
Vicki, Gina & Tom

Into Strong Memorial tomorrow

Dr Amato has decided to have the fluid around Joe's pleural space removed tomorrow before we go to Houston. We'll be in Strong at 1 pm for the thorascentis by Dr Jones. The procedure should not take too long - they'll watch him for a bit afterwards to make sure that he is OK to come home. The removal of the fluid should make him more comfortable, especially as we travel this Friday to Houston.

Thank you for all of the well wishes as we embark on yet another hurdle in the road. That's OK, we're getting good at jumping over them!

More news tomorow when we're done!

Love
Vicki, Gina & Tom

Awaiting info from Dr Amato

Joe saw Dr Carolyn Jones today - a pulminary oncologist at Strong concerning his chest CT scan. Dr Kohli was looking for a pulminary embolism and didn't find one (blood clot) which is good news. Dr Jones went over the scans and cited 'something' happening in the lungs. Joe has had a small pleural effusion for quite some time now, however, it has grown. The fluid is not IN his lungs, but around one of them. The effusion looks to have grown since the CT scan in Strong in April, however, Dr Amato has more recent scans from July which, too, cited the fluid. So what do we do? We are waiting for Dr Amato to call us tomorrow with his decision to tap the fluid here in Rochester or wait for his own tests Friday in Houston and make a determination as to what is happening in the lungs then.

If Dr Amato wants to have the fluid removed and tested, he will have the Thorascentesis on Wednesday morning at Strong Memorial as an outpatient. There is a risk to puncture the lungs if done improperly. Although they complete the procedure under ultrasound guide , it's no secret how uncomfortable I am with anything done at Strong memorial - - - we're a little worried about jeopardizing our trip on Friday with Dr Amato. If he does have the procedure, he cannot take his Lovenox (blood clot) medicine Tuesday night or Wednesday morning.

So here we wait. Dr Jones was unclear as to whether it's an infection (either pneumonia or a bacterial fungal infection), fluid accumulation or additional cancer tumors in the lungs. At this point we do not know. If they do tap the fluid perhaps Joe will have some relief from the coughing and breathlessness that he is experiencing, plus perhaps he can lie down to sleep. At that time they will culture the fluid and take it to cytology where they will determine if there are cancer cells present in the fluid. Since there are cancer cells present in his abdominal fluid, there is a good chance that they are present in the pleural fluid as well. They also talked about applying a talc into the pleural space to stop the fluid from building up - however that is an inpatient procedure. Again, we will wait to see what Dr Amato suggests.

In the meantime, we had a wonderful dinner provided by the Potters and Ferrantes with Paul and Maureen while we sat and reminisced about his mother. Thank you both so much.

We are still hopeful that the Trovax/IL-2 trial is successful with Joe and that on Monday the 18th we will receive positive news from Dr Amato, even though we are now faced with this additional issue. Whatever the outcome, we will find a treatment that will work for Joe - of that I am positive. So for now, we will maintain a quiet watchful wait to see what Dr A has in mind. Above all, we trust he and Dr Kohli to make the best recommendation for Joe's treatment.

My mother was released from the hospital today and is home happily resting comfortably. Thank you to my parents for their generous gift of money to keep us going to Houston.

My Godfather emails me jokes and wonderfully spiritual quotes daily which keep me going. Thank you Uncle Tony - I am very lucky to have you as my godfather! I thought I would share his thoughts that he sent to me today:

Good Morning !!!!
This morning when I wakened
And saw the sun above,
I softly said, "Good morning, Lord,
Bless everyone I love"

Right away I thought of you
And said a loving prayer,
That He would bless you specially,
And keep you free from care.

I thought of all the happiness
A day could hold in store,
I wished it all for you because
No one deserves it more.

I felt so warm and good inside,
My heart was all aglow.
I know God heard my prayers for you,
He hears them all, you know.

May God hear my prayers to have Joe cured.

With love and continued hope
Vicki, Gina & Tom

Life

Paul's mom, Shirley Cassarino, passed away a little after midnight on Sunday morning after battling for such a short time with lung cancer. She was 70. Her battle has ended and she is no longer in pain. We will all miss her.

All of us are grateful for Paul as he set up this blog and it's been a wonderful way to communicate to you all. For those wishing to send a condolences to Paul & Maureen their address is:

Paul & Maureen Cassarino
35 Charit Way
Rochester, NY 14626


For those of you I've talked to, my mother should be released from Rochester General Hospital today. She has had her medicine regulated and is doing better - still weak - but better.

Today we will find out the results of Joe's CT chest scan concerning the fluid in his lungs. At this point we are hopeful that it is just fluid that we can take care of and we will be going to Houston for his restaging on Friday.

With continued hope for a better tomorrow,
Vicki

No IL-2 week!

And here we thought that this week Joe would have a break from taking daily shots! He is tolerating his Lovenox shots well for the blood clot in his leg. He will begin is Procrit shots as soon as the pharmacy ok's the prescription. This is a once every 2 week intermuscular shot.

Joe has developed some fluid in his lungs. Right now we are not sure what course of action the doctors will take. He has had a pleural effusion all along - however - now it's causing him to be a little short of breath and cough periodically.

We are still on to go to Houston on the 15th for his CT scans and restaging. With the fluid build-up in his legs and now lungs, traveling will be a little more difficult, but we will manage.

Thanks to Marsha for helping me this week with his shots while I am traveling. Thanks to the Ferrantes and the Pettinaro's for feeding Joe and Tom...feeding Tom IS a tall order! Thanks to all for checking on Joe daily.

I'll be home Friday night - just in time for the Spencerport Soccer tournament. Gina, too, is coming home to watch the boys play and celebrate Blake's birthday. I hear Tom and Richie Ferrante were in the Brockport news as "up-incoming players" for the varsity team. Way to go guys - we are VERY proud of you!

Much love,
Vicki

Last day of IL-2 this treatment schedule!

Today marks the last day of IL-2 for this 8-week schedule! Joe will have 2 weeks off before we go back to Houston for his re-staging.

Joe has unfortunately formed a blood clot in his right leg up near his groin. He has to wear surgical stockings to bed at night and keep his feet raised fairly regularly during the day. Unfortunately he has to have 2 shots of Lovenox daily. Thanks, Marsha, for helping me out last night.

"Deep venous thrombosis (DVT) refers to a blood clot embedded in one of the major deep veins of the lower legs, thighs, or pelvis. A clot blocks blood circulation through these veins, which carry blood from the lower body back to the heart. The blockage can cause pain, swelling, or warmth in the affected leg. Low molecular weight heparin (Lovenox) is a newer option for treating DVT at home. This form of heparin is given twice daily by injecting into your skin. The pharmacy dispenses the drug in prefilled, easy-to-use syringes"

So just when Joe thought is was safe to get away from injections for 2 weeks - something else has reared it's ugly head! We will be watching this very closely to ensure that travel to Houston on the 15th will not harm him.

He also will begin getting Procrit in a few days for his anemia. Unfortunately, this, too, is injectable. Since it's a deep muscle injection, it won't feel good. Good news is that it does not have to be administered daily, but weekly. Also good news is that he is not supposed to move too fast, so I'll be able to catch him pretty easily as I chase him around with needles and patches of alcohol!

Today is the first actual game for the Spencerport Varsity soccer team! They won their scrimmage against Pittsford Sutherland on Monday. Keep your eyes on #23 - Tom - as he makes his debut today in Hilton at 3 pm! Joe and I will be there in our Ranger colors. Even Cameo is a Ranger pup - she wears blue and gold to the games!

While the weather here in Rochester will not be conducive to a picnic, we want to wish everyone a safe and relaxing Labor day weekend!

With today the first of September we are inspired as a new season is upon us. New life, renewed spirits and hope for a positive outcome in Houston for Joe, regression and positive therapy for Scott Anderson and a therapy choice for Mrs Cassarino to help her on her journey.

"Hope sees the invisible, feels the intangible and achieves the impossible"

With continued Hope and Love,
Vicki, Gina & Tom