Hospital stay update!

Joe will remain at Strong Memorial at least through the weekend. He is scheduled for a bone scan to determine whether the Interferon and Sutent have reversed the cancer in his pelvis and right shoulder. We are very hopeful that this treatment has been effective! He is still suffering from abdominal pain from the infection. The doctors have decided to keep the abdominal catheter in place for a couple more weeks before removing it. The goal is by that time the lymph system will be repaired to stop leaking fluids and his infection will be gone. This ascites has been a horrid nightmare from the start! If this course does not fix the issue, I believe that we'll have to take additional action to clear this up once and for all! I know that he'll feel 100% better without the constant abdominal pain, not to mention the high risk of infection that he has just by having the ascites existing in his abdomen as well as the catheter as an inlet to bacteria. He also needs to go back to eating real food!

He's had some complications with low calcium counts which have manifested itself with cramping in his hands. I believe that was caused by not having any nutrition on Wednesday as they were not 'able' to get his TPN from the pharmacy when we went into emergency. He appears to be OK now and he is back on TPN nightly. He is still pretty weak and very tired due to the pain medication for the infection and out of it much of the time. A game of scrabble with Gina and I knocked him out for several hours.

We will make the best of a bad situation and celebrate Tom's birthday, my dad's birthday and our anniversary in the hospital this weekend.

Back in at Strong

This morning I took Joe back into Strong Memorial emergency as he was experiencing abdominal pain again and was quite distended. He had not been feeling well for the last few days and said that his stomach felt like it was going to 'explode'. After sitting in the emergency room for several hours and having another X-Ray of his abdomen, the doctors determined that he once again has peritonitis, another infection in his abdomen. If it's due to the ascites that is still accumulating or the peritonial catheter that that he has inserted - we don't know. He is back on antibiotics and was admitted after a mere 13 1/2 hours of wait! I think that the worst part was being taken out of a room and placed in the hallway for an hour...or maybe it was when they threw out my sister who came to give me a sandwich...either one qualifies for the worst treatment award! But thanks Toni, I was starving!

He is on the 4th floor, 1200 unit, green elevators, actually a very nice area. The rooms are large and the staff appears to be great. The infectious disease docs are pondering whether to leave the catheter in place or remove it......albiet I don't know what we'll do as the ascites continues to collect without the 'tap'. Either way we'll have to have a plan in place to keep him comfortable.

Today was suppose to be the day that we found out the results from his cat scans on Monday. As predicable for Joe, the cat scan machine broke down after they scanned his head and he was forced to wait over 2 hours for the engineers/mechanics to fix the machine. My dad took him and had to wait in the waiting room all this time! The machine got fixed - Joe got scanned - and the machine broke down again. Dr Kohli was able to tell us only that he got the results of the head CT - and that looked normal. Phew. What we're most concerned about is the pelvic region as that is where the cancer has gone in his bones. Hopefully tomorrow they will have additional news - and it will be GOOD news!!! :-) We certainly need a little sunshine!

I don't know how long Joe will be in the hospital but he's pretty bummed because tomorrow is Tom's 16th birthday (my dad's and Ann M's birthday, too!) and he's going to miss it. But, we'll all gather up there to do a little celebrating that our youngest is now (gulp) able to drive!

So, please send positive thoughts and prayers to Joe - to clear up this ascites as well as good news from the cat scan. It appears that we'll have to go down the third path and surgically repair the ascites leak - thank goodness for Dr Ray Lanzafame who is proficient at laproscopic surgery and is researching and willing to perform it, if Joe is stable enough to withstand it. More news on that as we determine our options.

Thanks for all your cards and letters - Joe is very appreciative of them all. Thanks Maria for dinner - it was WONDERFUL!!!

Love
Vicki, Gina & Tom

Oncologist Update

This week has been busy with Joe and doctors! On Monday we saw Dr Glazer, his surgeon, to see if we can identify a surgical or different approach to clearing up the ascites. Dr. Glazer checked him out and promised to get back to us as he researchs options including a Denver Shunt. This is something that would re-route the fluid until the lymph system healed properly. Thanks to Maureen to doing the research and finding someone in the world that has had this procedure - successfully! Dr Glazer and Dr Lanzafame will be consulting on this option. Dr Glazer was adverse to doing a lymph angiogram to find the leak - he said it's a very difficult procedure to find, then to fix. News at 11!

On Tuesday Joe's sister Nanette blessed us with a 3-day visit! Her help and knowledge have been priceless and we are most grateful for the time she gave to us! She not only cooked Tom and I dinner every night, but she even made me lunch!! All that and nursing skills combined made for a great 3 days for us! Thanks Nan! :-)

On Wednesday Nanette took Joe to see Dr Kohli. The appointment, at 12:30 didn't end until 5 pm as Joe was dehydrated again and needed IV fluids before they could take blood from his port. In addition, Dr Kohli was concerned that he may be developing blood clots, therefore they had to go to the ultrasound unit and have both legs checked out. Thank God he does not have a blood clot! Yeah - one hurdle Joe didn't have to jump over! He is still battling the fluid in his abdomen, with me draining fluid nightly. He is on an IV feeding system (TPN) since March 30th and is looking forward to the day that he is off the TPN and back on real live food! Dr Kohli was pleased with the progress of his abdominal area and believes that the TPN is working. We offered up another solution recently in clinical trials called TroVax which is a vaccination. Dr Kohli is researching this option. The current plan is when the ascites resolves to go forward with the Interleukin-2 treatments - at Roswell.

We're struggling with Joe's blood pressure and dehydration of late - both issues that are results of the ascites and his medication. He is back on both Sutent and Interferon treatments, although he had a rough night last night with fever and chills. We are giving him IV fluids at home.

Monday he will have a follow-up cat scan and bone scan and we'll find the results of them at 1 pm on Wednesday. We are praying for good news that the tumors have regressed.

We need that miracle!

Love
Vicki, Gina & Tom

Home at Last!

Yesterday Joe was released from Strong at 2:30 pm! It was a beautiful sunny day and he was quite happy to be home again. The medical delivery truck pulled in right behind us and we are set for one week with his home feeding system. At home nursing care will take blood, clean his central line dressing and take vitals periodically along with keep an eye on me to make sure that I correctly complete his feeding schedule. Last night went well - so far so good. His blood counts look good so he is once again on the Sutent pills, Dr Kohli is holding off on the Interferon for this week to make sure that his counts continue on the upward slide. His infection is getting better however he is still very distended and swollen in his abdominal area.

It's good to be home.

14 days @ Strong

14 long days at Strong. Today or tomorrow, pending the infection and his blood counts, Joe will be home. Horray. It's been a roller coaster ride the entire time he's been in with the latest issues concerning his overall care and lack thereof. The resident missed the orders for his peritonial antibiotics for 24 hours, thus he missed 2 doses of medicine, and we slipped a bit on Friday. It's not like Maureen and I were not asking every hour or so where it was - but the communication at Strong is simply not lean, thus is care was compromised and his health put at risk. I was brutally honest (and a little loud) with the resident, the patient advocate and the nurse manager, along wtih his doctor and the head of oncology - all who apologized over and over for their mistake. It is frustrating and infuriating. This is not the end of the saga, I have only begun to make waves concerning his care.

He is feeling stronger and is off his IV pain medication, so we're managing that with oral medication. He is on the TPN and tolerating that well - he will continue it at home along with a series of antibiotics - which I can assure you I will not forget to give to him!

With Easter this Sunday I know a miracle is around the corner!

I'll update again when he is home. Until then, Joe is dreaming of the day when he can eat Lasagna, subs & pizza!


Vicki, Gina & Tom

Moving Forward

Today Joe's white cell count was 3 up from .8 which is a huge positive! With his white cell count healthier and the hoards of antibiotics that they're pumping into him he should be better able to fight the secondary peritonitis that he has...

Webster's defines Peritonitis as:

"Peritonitis is an inflammation of the peritoneum, the thin membrane that lines the abdominal wall and covers most of the organs of the body. There are two major types of peritonitis. Primary peritonitis is caused by the spread of an infection from the blood and lymph nodes to the peritoneum. This type of peritonitis is rare – less than 1% of all cases of peritonitis are primary. The more common type of peritonitis, called secondary peritonitis, is caused by the entry of bacteria or enzymes into the peritoneum from the gastrointestinal or biliary tract. Both cases of peritonitis are very serious and can be life-threatening if not treated properly."

I also hope that he can go back on his immunization therapy - Sutent & Interferon to fight the cancer.

His spirits are raising but he is still in a great deal of pain. To control it and keep him comfortable he is also on a great deal of pain medication - so he is in and out of sleep frequently.

There's no place to go but up from here - please keep Joe in your prayers and pray that he is able to get through this and fight the cancer. We're still waiting for our miracle.....

Love
Vicki, Gina & Tom

Hospital Update

Joe is still in Strong Memorial Hospital - they have moved him from the bone marrow unit to the oncology unit, so he is on the 6th floor in the 3400 unit, room 4 (red elevators). They moved him yesterday around 3 pm, I say they, it was the nurse and I. What a fiasco moving him and the very large IV pole with all of the antibiotics and other meds hanging! Apparently the transport people were 'busy' and the bone marrow unit was in desperate need for a bed. Alas, Laura and I got him into an elevator (Joe was guiding us on the right way to do it!) and into the new unit. I complained enough so that they got him a private room and one that is away from the hustle and bustle of the nurse's station as he needs rest.
The doctors have pinpointed his bacteria and identified it as Strep in his abdomen. He is getting IV antibiotics (2 kinds) 2 times per day and antibiotics directly into his abdomen 2 kinds, 2 times per day. He's been tolerating his TPN well and has not lost any more weight. He was vomiting again this morning and his blood pressure has been vascilating from high to low so they are working with the fluids and medicine that he's on to pinpoint just what's going on.
I anticipate that he will be there all weekend with a release date of Monday at the earliest - pending stabilizing his blood pressure and his stomach.

Happy 21st birthday to our godchild and niece Jamie!

Love,
Vicki, Gina & Tom

A Bug

Joe gave us all quite a scare late yesterday afternoon when a sudden onset of pain in his abdomen overtook him. Draining a liter of fluid out of his belly catheter usually relieves the pressure, but in this case his blood sugar and blood pressure dropped to an alarming rate. The nurses immediately gave him saline into his port line, juice and sugar water. 20 minutes later his sugar and blood pressure levels were stable and they moved him to x-ray to see what was going on in the abdomen. The doctors were pleased that they found no tumors, blockages or tears in his abdomen, colon or stomach but were still confused as to what caused the sudden onset of excrutiating pain. His abdomen was also very distended, even after the draining, which is unusual. The nurses took blood from all three of his ports for testing. They attempted to get a clean sample of blood from his arm but after 4 nurses were unsuccessful, thankfully, they left him alone. They took a sample of the ascities and his urine for testing. Apparently he has an infection in his abdominal area, most likely from the tube in his belly or the ascities that resides in this area. He is on hourly morphine shots to control the pain. It took about 12 hours to stabilize him and get the pain under control. The doctors are treating him with both IV antibiotics as well as antibiotics in his abdominal catheter - which causes him pain as they flush through it. He is weak. The docs did order his TPN last night so he is getting the nutrition and fluids he needs but his kidney and bowel functions are less than stellar. Preliminary reports on his labs show that his white cell count is still very low causing his body to not have anything to fight off bacteria. The good news is that they believe that the bacteria is 'common' and he can be treated with an IV antibiotic.

It is so hard to see a loved one suffer and be in such pain for so long. Gina was wonderful - she remained calm and stayed right with him, answering the doctor's questions as they all piled into the room to determine what had gone wrong when finally things were going so right. Maureen, Gina and Pat stayed with us until 9, then I stayed through the night. About 3 am he finally was able to rest comfortably. This morning Dr Kohli and the other team of doctors will be in to hopefully pinpoint the bug that bit him so severely and treat it effectively.

One step forward, three steps backwards. My best estimate is that he'll be in the hospital until at least Monday.

Hospital Update

Unfortunately Joe did not get discharged from the hospital on Monday as we had planned. Lack of a reading his chart to provide to Blue choice a letter of medical necessity (for his in-home care and TPN feeding) along with mis-communication between the doctor and the nutritionist both caused the snafu. What red tape one has to go through in the medical community! After I lost my temper it was obvious that there was nothing that could change the outcome. We made the best of the afternoon as Gina, Blake and I took Joe outside for some sun and fresh air. We spent the evening watching movies and TV. His overall color is better and he's been changed to a 12-hour feeding schedule - 6pm to 6am - with 2400 calories a day. With this schedule he will be free to move about the house during the day. In the evening if we go out we can carry the TPN in a backpack and he'll be getting all of the nutrition that he needs. We have orders for a 30-day TPN regimen - the doctor will assess the ascities at that time and hopefully, move him to a food & TPN schedule and wean him off the TPN. Joe has a list of foods that he is craving - mostly Italian food & subs - and we promised to accomodate all those cravings as soon as we can!
The current plan is to release him on Wednesday. I won't hold my breath!

Joe's sister Roxanne will be admitted to Little Falls General Hospital today to remove her gallbladder. Our prayers are with you Rox - hope to see you soon!

Love,
Vicki, Gina & Tom

Hospital Stay Update

Joe is still in Strong Memorial Hospital and will likely be released Monday or Tuesday, pending his white cell count and nutritional status. He began the TPN on Thursday and has had his 'vanilla milkshake' nightly since. They're running a 19-hour feeding schedule to be lowered to a 12-hour feeding schedule when he comes home. He's very fatigued but is no longer dehydrated. On Friday Maureen and I took the "TPN feeding" lesson and learned the process of setting up and disconnecting the TPN from his central line. The nurses taught me how to change the dressings and both of us feel comfortable with the processes. On Monday I will get a refresher course and the nurse will train Gina to be another back-up for me.

I can't say enough good things about the nurses on the bone marrow floor - they are all wonderful and he is in good hands. Because his white cell count is very low and continues to plummet they have temporarily taken him off both Sutent and Interferon. This concerns me greatly, however, I have to place my trust in their best judgement. The doctor hopes that tomorrow his cell count will rise so that he can continue treatment. With Easter right around the corner, we are praying for a miracle!

On the positive side, Joe's spirits have seem to be lifting since he's feeing stronger and he truly enjoyed our visit with Barb and Jimmy last night. Gina is home until Wednesday to help me along. Gina, Blake, Tom & Katie all visited this afternoon/evening with Joe and I and we had a small celebration for Jamie's 21st birthday. She is our godchild and very special to us.

Joe is enjoying all of the cards and letters you're all sending and we are most appreciative of the prayers and good thoughts coming his way. The positive energy is there!

Love
Vicki, Gina & Tom