Post # 49 - Day 33 through Day 52 – Happy New Year!!!

Day 33 – Sunday, December 12, 2010
WBC 5.34 / ANC 4.63 / Creatinine 1.2 / BUN 36 / Hemoglobin 10.3 / Platelets 120

Today was another day at Moffitt. Bill continues to improve, the doctors are talking about discharge later in the week if things continue to move it the right direction. They are still concerned with his fluid intake so he continues to get fluids during the day and TPN over night.
We started to notice that Bill’s skin looked like it was burned. His hands became extremely chapped, the skin cracked and he was in pain. It was most noticeable on his head, neck and hands. The doctor prescribed Triamcinolone Acetonide Cream USP, 0.1%.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.

Day 34 – Monday, December 13, 2010
WBC 4.48 / ANC 4.07 / Creatinine 1.4 / BUN 39 / Hemoglobin 10.5 / Platelets 114

Today Bills Tacrolimus Level was checked to see if he was getting the right dose. The level came in at 22.7 (normal is between 5.0 to 15.30) so his dosage was reduced. Every Monday a chest x-ray is performed, the one done today came back negative. Today I did not get to the hospital in the morning; I stayed at the apartment to work on a project that was due at work. This was the first day that I was not there to see the doctors when they rounded. I finished around 12:30pm and started to get ready to leave for the hospital when the phone rang, I could not believe my eyes, it was Bill!!!. This is the first time in over a month that he has touched his phone. The purpose for his call was to request food, to get him some cannoli. I was so excited to get a call from Bill, but even more excited that he was requesting that I bring food. I ran to Publix, picked up two cannoli’s and got them to Bill as quickly as I could. He tasted the cannoli and could tell it was not fresh, like we get from an Italian bakery, he did have a few bites. What is important here is that Bill was back!!! He was aware of his surrounding and the delirium was just about gone.
The TNP was started again at 6:00pm, and Bill did eat a few bites at each meal time. The burning in his mouth and throat were bad. He described the pain as fire.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.

Day 35 – Tuesday, December 14, 2010
WBC 4.66 / ANC 3.95 / Creatinine 1.5 / BUN 38 / Hemoglobin 10.0 / Platelets 112

Since I did not see the doctors round yesterday, I got up and made it my priority to get to the hospital so I didn’t miss them. Normally they don’t round before 9:30am. I got to Bill’s room and they were all in there talking with him at 9:00am. The doctor was asking Bill if he thought he was ready to go home. The then asked me the same questions. Based upon the way Bill responded to the Dr. it was clear to me that he was ready to go home. I believed that the delirium was gone and was not going to be an issue when I got him home. Once it was agreed that Bill would go home, the Dr. informed us that they wanted to do the bone marrow biopsy which is normally done at day 30. The procedure was schedule for 8:00am the following day. Since Bill’s fluid intake was not above the 2 liter mark, he was scheduled to return to the Bone Marrow Transplant infusion center (BMT) every day for a three hour infusion of a liter of saline.
After the rounding and discussions with the nurse, I ran out to go shopping to get food in the house, knowing that once Bill was home it would be difficult to get to the store.
Bill was discharged at 6:30pm, by Alli, the same nurse that discharged him the first time. Alli said to Bill as we were leaving, with a smile on her face, "I hope I never see you again". That is the line the nurses use to let you know that they don’t want you back in the inpatient setting, to stay healthy and stay home.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.

Day 36 – Wednesday, December 15, 2010
WBC 5.68 / ANC 4.66 / Creatinine 1.5 / BUN 35 / Hemoglobin 10.8 / Platelets 124 / Magnesium 1.8

First thing in the morning, Bill had his bone marrow biopsy. Everything when well during the procedure, Bill did not feel a thing. From the biopsy we went to the BMT to get the daily 1 liter infusion of saline. We did not get out of the Clinic until almost 4:30pm, it was a full day.
Bill has continued to have pain while trying to eat. The pain does not seem to be getting any better. We discussed the pain with the nurse and the PA, since Bill has an appointment with the Dr. on Thursday they decided to wait on taking any action.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.

Day 37 – Thursday, December 16, 2010
WBC 3.98 / ANC 3.22 / Creatinine 1.4 / BUN 28 / Hemoglobin 10.3 / Platelets 99 / Magnesium 1.5

Today started off like all the other days, Bill got up, showered and took his pills. We got to the clinic at 10:00am for our daily drip. Every day after you check in at BMT, the techs take vital signs. Bill’s temperature was 100.5, the magic number for signs of an infection. That number is the catalyst for a protocol to test Bill’s blood for every know Bacteria, Fungus and Virus, they call it "fever protocol". They took blood cultures from each line of the triple lumen catheter, cultures from the power port and peripherally in his arm. A urine analysis was also done. We knew it was going to be another long day.

Bill was hooked up for his three hour drip and we waited for the CBC to come back. Normal magnesium levels are between 1.6 and 2.3; his level came back at 1.5 so a dose of magnesium was added to the IV tree. Due to the temperature, Bill was also started on Cefepime – 1mg IV.
Now we begin the waiting game to see if they will find it necessary to admit Bill. Throughout the day, Bill’s temperature varied from 99.7 to 100.3, but never reached 100.5 again. Around 4:00pm the Dr. came in to the clinic for Bill’s weekly appointment. Based upon the preliminary blood work and Bill’s temperature readings through the day, he did not feel it was necessary to admit Bill. The next topic of discussion was Bill’s weight and inability to eat due to the burning in his mouth and throat. The doctor took a look in Bill’s mouth and ordered a swab culture of the sores. We were on our way home by 6:30pm.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 38 – Friday, December 17, 2010
WBC 4.12 / ANC >1.5 / Creatinine 1.3 / BUN 24 / Hemoglobin 10.6 / Platelets 102 / Magnesium 1.3

We got to the BMT clinic at 10:00am for our daily drip. Today Bill’s temperature was 99.5 , 1 degree below the 100.5. His weight was 53.2kg or 117.25 lb. Since his admission on November 3, 2010 Bill lost 20 pounds. In the last week he lost about 8 pounds. This is an alarming decline in weight and a discussion with the PA was scheduled while we were at the clinic. Since Bill’s magnesium was still below 1.6 he received another bag of IV magnesium.

Around 1:00pm the PA came in to see us and brought results of the mouth swab. The results came back positive for Herpes Simplex Virus (HSV). It was not a total surprise to us since we were told that HSV was one of four viruses that were possible post transplant. Bill was taken off of Acyclovir 800mg, 1 tablet twice per day and put on Famciclovir (Famvir) 500 mgs, 1 tablet twice per day. The Acyclovir is an anti viral used to prevent the sores from starting. The 500mg dose of Famvir is a therapeutic dose to heal the outbreak.

Since Bill has had no relief from the pain in his throat and the news of the herpies virus in his mouth, the doctor ordered an endoscopy to take a look at Bill’s esophagus and stomach to see what was going on. The procedure was scheduled for Monday morning at 8:00am. Bill was also started on Sucralfate (Carafate) – 1 gram (10 ml or two tea spoons) by month at each meal and bedtime. Sucralfate is used to treat ulcers. It adheres to damaged ulcer tissue and protects against acid and enzymes so healing can occur.

Up until this point, Bill did not have the energy to talk on the phone, and the sores made it difficult if he tried. Thursday night I called his sister Margy and told her that Bill needed a visit. When we got home from BMT I told Bill he was getting company that night, so he took a nap and then waited up to see his visitors. Friday night Margy (FL) and Lue (NY) came at 11:30pm to see Bill. He was very happy. Best of all I asked Lue to bring cannoli from NY and she did.
Getting it through customs is a great story, too long to tell here. We are thankful she had an understanding and compassonate TSA employee for took the time to listen (Imagine). By midnight everyone was in bed, Lue and Margy stayed in the extra bedroom.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 39 – Saturday, December 18, 2010
I did not get the blood results for this day.

We got to the clinic at 9:30am for the daily drip. We were informed that one of the cultures from Thursday came back positive for a blood infection. It was common and easily treatable with the antibiotic - Daptomycin, 4 Milligrams/Kilogram intravenous for 10 days. Along with the 1 liter of saline, Bill started the Daptomycin.

While we were at the clinic his sisters went shopping to make Bill a homemade meal. I do my best with the cooking, but there is nothing like a real good Italian meal. When we got back to the apartment we heard Christmas music playing through the door. We open the door and found that they had decorated the apartment with a small Christmas tree, stocking, gifts and the works. It was such a nice treat after everything that both Bill and I had been through for the last seven weeks. We celebrated Christmas early this year by opening the gifts and having a grand old time.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 40 – Sunday, December 19, 2010
I did not get blood results for this day.

We got to the clinic at 10:00am for our daily liter of saline and the second dose of Daptomycin. Nothing new was added, we got back to the apartment by 2:00pm and enjoyed the rest of the day with his sisters and brother in law (Gary). We had a great home cooked meal. Everyone left to go home around 5:00pm
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 41 – Monday, December 20, 2010
Due to the endoscopy, I forgot to get blood results for this day.

We got to the clinic at 7:50am for the 8:00am endoscopy. Bill was taken in and was done by 9:30am. Everything when smoothly and Bill did not have any pain. Post procedure, the Dr. that did the endoscopy told us that Bill had lesions throughout his esophagus. A biopsy of his esophagus and his stomach were taken and sent to the lab. From the procedure we went to the clinic for our daily liter of saline and third dose of Daptomycin.

We spoke to the PA about Bill’s weight loss and asked if we could start TPN again. Not being able to eat and fuel his body was delaying his recovery. The case manager was called to start the process with the insurance company.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 42 – Tuesday, December 21, 2010
WBC 4.93 / ANC 4.44 / Creatinine 1.3 / BUN 20 / Hemoglobin 9.2 / Platelets 99 / Magnesium 1.4 / Phosphorus 2.4

We got to the clinic at 9:30am for our daily liter of saline and forth dose of Daptomycin. Magnesium was below 1.6 so Bill got a bag of IV magnesium. His phosphorus was also low (normal is 2.5 – 4.5) so he received a bag of IV phosphorus.

The results from the biopsy of the esophagus taken on Monday came back positive for herpes. The biopsy of the stomach came back with a mild case of GVHD. Since Bill was already on 500mg of Famvir twice a day, he was already on a therapeutic dose for the herpes in his esophagus., the Budesonide (Entocort) and the Beclomethansone was already treating for GVHD so no new medications were added. The doctor told us that Bill had a severe case of HSV and could understand why eating was a problem.

Late afternoon, Bill’s son William came to Tampa to provide me with a respite day. He spent the night so that I could go home to Titusville on Wednesday.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 43 – Wednesday, December 22, 2010
WBC 3.63 / ANC >1.5 / Creatinine 1.3 / BUN 17 / Hemoglobin 9.2 / Platelets 100 / Magnesium 1.5

I went home to Titusville very early in the morning to go to work for the day. After work, I went over to Wendy’s house to visit with Tweedy our bird. We let Tweedy out of the cage to fly around and stretch his wings. After, Tweedy got a bath and then I left to go back to Tampa. Wendy and Scott are doing such a great job with Tweedy.

Bill and his son got to the clinic at 10:00am for his daily liter of saline and fifth dose of Daptomycin. Magnesium was low again so Bill received another bag of IV magnesium.

We received two movies from Bill’s sister Marietta which provided us with a nice treat. Crossing Delancey and Avalon, two movies neither of us has seen. Thanks Marietta!!

William brought oranges picked from the tree at our old house in Deltona (The house is owned by Lue). He also brough his orange juice squeezer and made orange juice. Everything went well while I was away and Bill told me that William did a great job. Thanks William!!

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 44 – Thursday, December 23, 2010
I did not get blood work results for this day.

We got to the clinic at 9:30am for our daily liter of saline and sixth dose of Daptomycin.
Bill had his weekly appointment with the doctor and nothing was changed. Blood work was ordered to be done once a week going forward.

Since we did not hear anything about the TPN, we paged the case manager to find out what the hold up was. We found out that the Insurance company denied the TPN. We, along with the doctor felt that an appeal was in order, so it was filed Thursday afternoon. The insurance company has three days to make a determination on the appeal, with the holiday and week-end upon us we made the decision to move forward with the TPN, it was Bill’s life and body that were at stake. Everything was set up for delivery of the TPN by 5:00pm the next day. A home health nurse was scheduled to come and hook up the TPN and provide me with training.

My friend Jeff and his wife Crystal (who was expecting a baby any day) came over with Pizza for dinner. Although Bill was not able to eat due to the sores he hung out with us as long as he could.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus. He is not able to eat very much due to the severe pain in his throat.

Day 45 – Friday, December 24, 2010 – Christmas Eve

We got to the clinic at 10:00am for our daily liter of saline and seventh dose of Daptomycin. We got home and Bill was feeling fatigued and weak. He went to bed and stayed there for the remainder of the day, resting and watching TV. Around 5:00pm we heard someone singing Christmas carols outside the bedroom window, I opened the blinds and found Bill’s sister Margy and her husband Gary singing to Bill. (this was planned the week-end Margy came and decorated the apartment with Lue). Margy’s daughter Mollie and her friend Catherine also came to visit. Margy cooked another nice meal and left plenty of leftovers. Tonight was the first night that Bill had more than a few bites to eat.

The TPN, supplies and IV poll showed up. The nurse from home health care came and hooked up the TPN and provide me with training to hook him up the next four nights.

After the TPN was hooked up we had Cheese cake, Ice cream and apple pie for desert and then everyone left to return home.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.

Day 46 – Saturday, December 25, 2010 – Christmas Day

We got to the clinic at 9:30am for our daily liter of saline and eighth dose of Daptomycin. The nurse in the BMT clinic disconnected the TPN and flushed the lines.

Around 7:00pm, I did my first ever hook up to an IV line. I was very nervous, but had my notes and directions and did ok. Needless to say, I started the TPN with no problems and Bill did not have any reactions. What a relief. Bill is starting to eat a few bites at breakfast, lunch and dinner.
Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.
Day 47 – Sunday, December 26, 2010 – Happy 3rd Birthday to my nephew Ryan
We got to the clinic at 9:30 for our daily liter of saline and ninth dose of Daptomycin. The nurse in the BMT clinic disconnected the TPN and flushed the lines.
Around 7:00pm, I hooked up Bill’s third TPN. Bill has been getting up to urinate almost 20 times during the night so his sleep in not very productive. His eating is doing marginally better each day.

Bill continues to have pinkish colored urine (diluted blood), clots and bladder spasms related to the BK virus.

Day 48 – Monday, December 27, 2010

We got to the clinic at 9:30am for our daily liter of saline and tenth and final dose of Daptomycin. The nurse in the BMT clinic disconnected the TPN and flushed the lines.
Bill continues to eat a little more each day and is starting to get some relief in his esophagus.
Around 7:00pm, I hooked up Bill’s fourth TPN. Bill continues to get up to urinate 20 times during the night so during the day he is very tired. Bill continues to have pinkish colored urine.

Day 49 – Tuesday, December 28, 2010

We got to the clinic at 9:30am for our daily liter of saline. The nurse in the BMT clinic disconnected the TPN and flushed the lines. Since the Daptomycin ended yesterday, blood cultures were once again done to confirm that the infection was gone.

The PA informed us that Bill tested positive to a fungus test two weeks in a row and would need to start medication the next day to treat. When this fungus is detected, a CT of the Thorax and Sinuses is order to confirm the diagnosis and make sure it is not a false positive. The CT was scheduled for the very next morning at 8:00am.

Around 5:00pm, I hooked up Bill’s fifth and final TPN. The plan is for me to disconnect the TPN at home prior to leaving for the clinic for his CT’s. He is still getting up frequently during the night to urinate and continues to have pinkish colored urine.

Day 50 – Wednesday, December 29, 2010 – Happy Birthday Margy!! Half way to day 100
WBC 3.08 / ANC >1.5 / Creatinine 1.1 / BUN 36 / Hemoglobin 9.1 / Platelets 102 / Magnesium 2.3

We got up at 6:00am and at 6:30am I disconnected the TPN and flushed his line with saline and heprin. We left for the clinic and at 8:00am Bill had his CT’s. We were in the BMT clinic by 9:00am for his daily liter of saline. We went home for a few hours after the clinic visit and then returned for our 3:30pm appointment with the doctor.

During our visit with the doctor we learned that the CT’s both came back negative so the additional medication was not necessary. However the CT did show that the right side of the kidney showed hypo cellular nephrosis. It was suggested that Bill get a stent placed in the ureter to prevent the kidneys from creating a problem or getting damage. The ureters are muscular tubes that allow urine to pass from the kidneys to the bladder. Due to the BK virus the passing of urine is not happening freely as it should. The doctor suggested we get a consult from urology before the procedure is scheduled. Since Bill is still getting sores in his mouth the Famvir was increased to 500mg, 1 tablet three times a day. The blood cultures done on Tuesday were all coming back negative.

The other good news that we received was the results from the bone marrow biopsy came back and there is still no sign of the disease, Bill remains in remission. The doctor said that, in his opinion, he does not expect the disease to come back, but only time will tell!!!

If you remember back to the beginning of the blog, with chemo, if you get to remission (which is not a cure) only time will tell if the disease will relapse. The definition of remission is that the disease is undetectible.

Bill has been eating a little more at each meal. He is still getting up frequently during the night to urinate and continues to have pinkish colored urine.
Fluids were ordered daily for another week.

Day 51 – Thursday, December 30, 2010
We got to the clinic at 10:30am for our daily liter of saline. Nothing new at the clinic to report.
This evening before we ate, Bill came out from the bathroom and said the urine was yellowish in color. Could this be the beginning of the end of the BK virus? For the remainder of the night there was very little blood in his urine. Although the color is improving he is still getting up multiple times to urinate.

We received a package in the mail, from my sister Nancy’s family, of gourmet hot cocoa, marshmallows and chocolate candy canes. Thanks Cheney Family.

Today was another milestone – Bill turned on his iPad for the first time since the transplant!!!

Day 52 – Friday, December 31, 2010 – New Years Eve
We got to the clinic at 10:30am for our daily liter of saline. Before we left the clinic Bill experience some pain in his abdomen. The PA came to examine him and believed the pain was from gas. Now that Bill is eating more and more, his bowels are waking up and most probably causing the pain. We will need to watch this new development.

We received a package from William, Bill's son, of Wolferman's english muffins. By far, they are the best english muffins you could ever eat. There are four flavors: Pumpkin Spice, Cinnamon Raisin, Cherry blo0ssom and Everything. A great gift to end the year, you know what I am eating every morning next year! Thanks William and family.

The TPN and the food that Bill has been eating has allowed him to gain some weight. His vitals have remained strong and his blood count is pretty close to normal. As of today he weighed 122 pounds. Each day we see a small improvement in Bill's recovery. Thanks for your continued support, prayers and well wishes.

Happy New Years !!!!

Post # 48 - Day 14 through Day 32

I would like to apologize for the lag between posts. As you read you will understand why I have not been able to post on a regular basis. For all those future caregivers, I must say without hesitation that this is by far the most difficult thing I have ever done in my measly 46 years. Being a caregiver is a full time job and then some. It is not just being there for the patient, it is being an advocate for the patient. There have been so many times where my being there for Bill has made the difference in the care that he is receiving. It could be someone such as a sitter that is impatient with Bill or doing things that will agitate him and suggesting solutions that allows everyone to win. Or understanding what he is trying to say when no one else can make out the words with the mucucitis and swollen tongue. During the delirium Bill would say things that would make no sense to anyone else, but I knew exactly what he was talking about and was able to respond. Those who have previously been caregivers, I take my hat off to you. You tried to warn me to have a support system, a back up plan and to take care of myself or I would be of no use to Bill. I listened, but waited to long to cry for help (always my nature). There have been days that have gone by and I don't remember them, I have reached exhaustion on more than one occasion. Enough about me, now on to Bill.

Day 14 - Tuesday, November 23, 2010
Today was the first day that Bill's Absolute Neutrophil Count (ANC) was above 1,000, the actual count was 1,080. Two consecutive days above 1,000 and it is considered a successful engraftment. His Creatinine (2.0) and BUN (40) were also coming down which was good news. Bill is still not able to eat or drink, all meds are administered via IV.
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Day 15 - Wednesday, November 24, 2010
A day to celebrate!!!! This is the second consecutive day that Bill's ANC is above 1,000, the actual number is 1,840. Due to the holiday week-end coming up, they gave us the keys to the local apartment that we will be renting. There was a possibility that Bill could be discharged during the week-end and the housing department was closed Thursday (Thanksgiving) through Sunday. It was nice to have an end of sleeping in a hospital room in sight. As of today we have spent 7 days pre-transplant and 15 days post-transplant for a total of 22 days. Creatinine (1.9) continued to come down, the BUN (43) went up slightly.

Bill started taking Leflunomide 10mg tablet - The label use for this drug is to treat rheumatoid arthritis. There have been recent studies regarding the use for BK virus.

From Wikipedia - The cornerstone of therapy is reduction in immunosuppression. A recent surge in BKVN correlates with use of potent immunosuppressant drugs, such as tacrolimus and mycophenolate mofetil (MMF) (CellCept). Studies have not shown any correlation between BKVN and a single immunosuppressive agent but rather the overall immunosuppressive load.

No guidelines or drug levels and doses exist for proper reduction of immunosuppressants in BKVN
Most common methods:
1.Withdrawal of MMF or tacrolimus
2.Replacement of tacrolimus by cyclosporine
3.Overall reduction of immunosuppressive load
4.Some cyclosporine trough levels reported to be reduced to 100-150 ng/ml and tacrolimus levels reduced to 3-5 ng/ml

The rationale behind using leflunomide in BKVN comes from its combined immunosuppressive and antiviral properties.

Day 16 - Thursday, November 25, 2010 - Happy Thanksgiving
WBC 4,010 / ANC 1,900 / Creatinie 1.5 / BUN 36 / Hemoglobin 9.3 / Platelets 187
Thanksgiving was a very nice, quiet and restful day. We started the day by watching the Macy's thanksgiving day parade and then when on to read a book, nap and watch move TV. I would like to thank David Gunsteens and Barbara Diesel for their invitations to join their families for dinner. I wanted to go, but did not have the energy to leave and didn't want to leave Bill alone. We did share a hospital turkey dinner with all the fixings. The continuous bladder irrigation was stopped.

Day 17 - Friday, November 26, 2010 - Mike saw Harry Potter and the Deathly Hallows
WBC 6,190 / ANC 3,470 / Creatinine 1.5 / BUN 36 / Hemoglobin 9.5 / Platelets 211
Today is another milestone for Bill's progress, the Foley catheter was removed. What a relief for Bill, not to mention the weight of the IV pole decreasing by about 8 lbs.

Due to the Kidney functions coming back to a near normal range, the leflunomide was stopped and Cidofovir was started. Cidofovir is used to treat viral infection of the eyes. It was difficult to find anything on Cidofovir and BK virus. The plan was to administer once a week for four to six weeks, via IV.

From Wikipedia - Cidofovir shows anti-BK virus activity in a subgroup of tranplant patients.

From PubMed - Administration of low-dose cidofovir was associated with clearance of BK virus DNA from blood and allograft, and stabilization of renal function in both patients, without significant toxicity.

Some pictures of Bill and his medical team: Bill with Dr. Mishra

Bill with Dr. Ochoa, Dr. Santiago and others on his team.

Day 18 - Saturday, November 27, 2010
WBC 4,860 / ANC 3,300 / Creatinine 1.4 / BUN 32 / Hemoglobin 8.1 / Platelets 191
Bill was very fatigued today. Our friend Mike Shaw came to visit and stayed until Monday. It was a nice change for me to have someone to help me. Mike helped with the preparation for the transition to the apartment. Mike did the inventory of items in the apartment and helped with shopping for supplies.

Day 19 - Sunday, November 28, 2010
WBC 3,500 / ANC 2,880 / Creatinine 1.4 / BUN 34 / Hemoglobin 8.3 / Platelets 198
For the first time in over a week, Bill walked in the hall with Mike Shaw and I. It was nice to see him get some of his energy back.

Day 20 - Monday, November 29, 2010
WBC 4,800 / Hemoglobin 8.9 / Platelets 237
Bill walked with Rehab, he is regaining his energy. Mike Shaw left to go home. One of the four pumps on the IV pole (Christmas tree) was removed. This is a sign that Bill is getting closer to being discharged.

Day 21 - Tuesday, November 30, 2010
WBC 3,450 / ANC 2,810 / Creatinine 1.2 / BUN 43 / Hemoglobin 8.2 / Platelets 210
The TPN (IV nutrition) was removed along with two other pumps. Only one pump remaining on the Christmas tree.
The transition nurse came to provide caregiver training one on one in Bill's room. The nutritionist came to provide training on proper food preparation and appropriate foods for immuno-compromised individuals. Both training session provided us with many hand-outs and notes to take with us.

Day 22 - Wednesday, December 1, 2010
WBC 3,500 / ANC 2,860 / Creatinine 1.5 / BUN 40 / Hemoglobin 7.5 / Platelets 199
Due to Bill's hemoglobin being below 8.0 he received two units of blood. A discharge date of Friday, December 3, 2010 was given as a target. Some of Bill's medications that were previously IV are being converted to pill form.

Day 23 - Thursday, December 2, 2010
WBC 6,590 / ANC 5,640 / Creatinine 1.6 / BUN 36 / Hemoglobin 10.8 / Platelets 210
Since the Creatinine was starting to climb again it was attributed to the Cidofovir. The Cidofovir was discontinued and Bill was put back on Leflunomide. The remainder of his meds were converted to pill form. The final pump was removed and the poll was removed. No more pushing and pulling the IV poll. No more lifting it over of the lip to the bathroom and no more hitting the extension cord with the wheels and the pole stopping dead. no more beeping every time an IV finish or there was an occlusion.

Day 24 - Friday, December 3, 2010 - discharge day!!!
WBC 6,510 / ANC 5,440 / Creatinine 1.6 / BUN 33 / Hemoglobin 10.7 / Platelets 190
The afternoon was dedicated to packing up all of our belongings and moving them to the apartment. I then went to Publix to stock the fridge and pantry. When I returned to the hospital I then had a visit with the outpatient pharmacy, where I purchased Bill's 18 prescriptions.
Here is a sample of the discharge instructions:
Home Care Diet - Immunosuppressed/Immunocompromised
Risk of Bleeding - use electric razor, use soft bristle toothbrush, avoid dental flossing, wear shoes
Risk of Infection - Avoid crowds and wear mask in public, avoid contact with the sick and children recently vaccinated, wash hands after using the bathroom and before meals, mouth care after every meal.
Instruction at Discharge - Call for uncontrollable pain, call for diarrhea, call for nausea/vomiting, call for any excessive bleeding, call for any questions regarding care.
Call for chills/Temperature greater than - 100.5
Notes - Avoid the sun, drink plenty of fluids, check skin daily for rashes.

We left the hospital around 7:30pm, Bill was so happy to be leaving the Bone Marrow Transplant Unit for the first time since November 3, 2010. A wheel chair was brought up and Bill walked behind it and pushed it all the way to the lobby. I got the car from the lot and we went home to the apartment. When we are ready to go to Titusville we will say we went home home.
Friday night was a rough night for us. Bill was still accustomed to the clinical staff waking him up at all hours of the night. He did not get much sleep and neither did I. Bill also seemed confused in the apartment.

Day 25 - Saturday, December 4, 2010
WBC 11.29 / ANC 9.59 / Creatinine 2.2 / BUN 47 / Hemoglobin 11.1 / Platelets 217
Bill had his first appointment in the BMT outpatient clinic at noon. Bill's orders at discharged included daily fluids since he was not eating and drinking enough. The confusion seemed to be getting worse. It took quite a long time for Bill to take his med's in the morning and at night. He was still having pain in is lower throat when he swallowed therefore he did not eat anything and had very little to drink. We did not get any sleep due to Bill's confusion.

Day 26 - Sunday, December 5, 2010
WBC 7.73 / ANC >1,500 / Creatinine 1.9 / BUN 43 / Hemoglobin 10.4 / Platelets 200
Bill's appointment in the BMT outpatient clinic was at 7:30am. Bill received his daily intake of IV fluids. After a second night of no sleep I expressed my concern that something was not right when I saw the PA. The confusion was getting worse and I was having difficultly taking care of Bill on my own. I called Margy to come and provide me some relief since I was exhausted. Margy and Gary came to visit, brought bagels from Bagel King in Deltona and brought pizza for dinner. Gary assisted me with the shopping while Margy stayed with Bill. They also noticed the extreme confusion that I was seeing. Bill had a few spoon fulls of food, otherwise he did not eat. For a third night we did not get much sleep.

Day 27 - Monday, December 6, 2010
WBC 7,320 / ANC 6,210 / Creatinine 2.2 / BUN 50 / Hemoglobin 10.1 / Platelets 165
Bill's appointment in the BMT outpatient clinic was at 7:30am again, He received his IV fluids. Again I expressed my concern to the staff. His Creatinine was climbing again due to lack of drinking. The nurse discussed Bill's condition with the doctor after her assessment and the Dr. admitted him due to delirium. They suspected that the Med's may have caused it or Bill might have an infection so all the blood cultures were done. Bill was started on Anti Viral, Bacterial and fugal meds. Since we moved into the apartment, I returned there to sleep.

Day 28 - Tuesday, December 7, 2010
WBC 4.22 / ANC 3.37 / Creatinine 1.9 / BUN 43 / Hemoglobin 8.8 / Plateletes 127
Bill's confusion was getting worse so they performed an MRI of the brain to rule of a viral infection. Since Bill was not able to take his pills the christmas tree was added and all his med's were converted to IV.

Day 29 - Wednesday, December 8, 2010
WBC 4,450 / ANC 3,540 / Creatinine 1.9 / BUN 34 / Hemoglobin 8.5 / Platelets 121
A lumbar puncture was performed and an ultra sound of the kidneys. Bill was fatigued and sleeping all the time, therefore they had to re-insert a foley catheter. The MRI came back negative. Some of the blood cultures also came back negative. Bill Developed Diarrhea which is a sign of GVHD, so he was prescribed two medications. I will update the information on the medications in a future posting. The Diarrhea was controlled after today.

Day 30 - Thursday, December 9, 2010
WBC 5,680 / ANC (--) / Creatinine 1.2 / BUN 20 / Hemoglobin 9.3 / Platelets 124
The rest of the blood cultures came back negative, the lumbar puncture came back negative, the kidney ultra sound was unremarkable. Bill's Kidney functions were coming back to normal now that his was on the IV again. Since Bill had not eaten he was started on TPN again.

Day 31 - Friday, December 10, 2010
WBC 4,640 / ANC 4,170 / Creatinine 1.0 / BUN 21 / Hemoglobin 8.5 / Platelets 110
Today was the first day that Bill tried to eat food. He was able to eat a few bites and he drank the required two liters.

Day 32 - Saturday, December 11, 2010
WBC 4,090 / ANC 3,630 / Creatinine 0.9 / BUN 24 / Hemoglobin 7.7 / Platelets 105
Bill received two units of red blood cells. His delirium had improved to the point that the foley was able to be removed. Bill continues to try and eat at each meal. He is drinking as much as he can tolerate. Bill started to bring attention to pain in his hands which turned into a rash. Another sign of GVHD. It is a good thing to get mild GVHD, that means the immune system is working.

Post #47 Update.............

Things have been kind of busy on my end with work and caring for Bill, hence the gap in an update. By the end of the day my energy level is very low. I will provide a more extensive update over the week-end, but here is the abridged version.

Bill is making progress:
-His mouth is healing - still having difficulty with pain in the throat and esophagus.
-His blood counts have been staying level.
-The BK virus will be around for a while, still has blood in the urine and pain in the abdomen, sometimes the pain is severe.
-If he continues on the path he is on and starts eating and drinking on his own he could be discharged to the local apartment by the week-end.

Thanks for following and thank you for all your support for Bill and I.
Mike

Post #46 First roller coaster ride post transplant......

Today is day 13, however I must go back to day 6 to bring everyone up to speed.

Day 6 - Monday November 15th, 2010
The day started out the same as the first 5 days did. Some time during the day we noticed Bill's urine was getting darker due to blood. Even though his platelets were 33 the doctor ordered 4 units of platelets due to the bleeding as their protocol becomes 50. (the normal protocol is 4 units of platelets when the patient is below 30). Vital signs are taken just prior to the transfusion then again 15 minutes in. Hives and fever are common side effects from receiving platelets. Bill did not get a fever but he did get a few hives. One was on his hand and the other was on his back. The hive on his back looked like a mega sized mosquito bite. Within 30 minutes the hives were gone. If the hives were severe Bill would have been premedicated with Benedryl before future transfusions. Blood work is taken after the transfusion to confirm levels, Bill's level only went up to 38 therefore he received another 4 units of platelets. This time he had no reaction and his platelets came up to 52.

Day 7 - Tuesday November 16th, 2010
Bill's sutures from the implanted triple lumen catheter were removed and the tegaderm dressing was changed. Tegaderm is not just a dressing; it is a multi-functional, sterile, waterproof yet breathable barrier that prevents germs and bacteria from getting to the site and helps in the healing process.

Shortly after a bowel movement Bill started to experience severe pain in his lower back. Even with increased pain medicine the pain would not subside. An x-ray of the abdomen, a blood test, urine test, bladder scan and ultra sound were performed and all came back negative. Bill's urine was getting darker and darker, he was starting to get bladder spasms and his appetite diminished. Very little sleep was achieved.

Day 8 - Wednesday, November 17th, 2010
Bill started to experience some confusion, the abdominal pain continued. Platelets and Hemoglobin levels were low so Bill received 8 units of Platelets and 2 units of blood. Late morning Bill started to pass clots in his urine. By late afternoon he was not able to pass urine and required a catheter to irrigate the bladder. A CT with contrast of the kidneys was performed. Prior to the CT, Bill was given a large amount of fluids to hydrate for processing the contrast through his kidneys. Just prior to the CT Bill began to labor when breathing and had a gurgle.

Practically no sleep was achieved this night.

Day 9 - Thursday, November 18th, 2010

At 5:00am Bill spiked a fever of 101.3 so the staff initiated fever protocol. Blood is taken for many different types of cultures and Maxipime (cefepime) 2,000mg - antibiotic - was started. Due to two sleepless nights I asked Margy to come to Tampa to help out so I could get some rest. Bill's blood counts were low again so he received 2 units of blood and 2 units of platelets. Blood and clots continued to drain through the catheter so the doctors started CBI - continuous bladder irrigation. We had a consult with a urologist and nephrologist. The CT shows inflammation in the tubes between the kidneys and the bladder. Bill's breathing was weak, his O2 saturation was as low as 71 so Bill was put on oxygen. The doctor informed us that Bill tested positive for the BK virus and had an infection in his bladder.
From Wikipedia - The BK virus rarely causes disease since many people who are infected with this virus are asymptomatic. If symptoms do appear, they tend to be mild: respiratory infection or fever. These are known as primary BK infections.
The virus then disseminates to the kidneys and urinary tract where it persists for the life of the individual. It is thought that up to 80% of the population contains a latent form of this virus, which remains latent until the body undergoes some form of immunosuppression.
Presentation in these immunocompromized individuals is much more severe. Clinical manifestations include renal dysfunction (seen by a progressive rise in serum creatinine), and an abnormal urinalysis revealing renal tubular cells and inflammatory cells.
In bone marrow transplant recipients it is notable as a cause for hemorrhagic cystitis.

Due to all the sudden developments, The staff moved Bill from the 4th floor to the 3rd floor where they had more staffing and resources to handle higher acuity patients. The 4th floor has a patient to nurse ratio of 3 to 1. On the 3rd floor they have the ability to provide a ratio of 2 to 1. I was so happy to have Margy here to help. Margy stayed the night to help out so I could sleep.

Day 10 - Friday, November 19th, 2010

Normally I don't have anything to report prior to 5:00am, however this day started shortly after midnight. Bill had become very agitated and delirious, his breathing was maintaining with the use of oxygen from two different sources. A nasal cannula and a face mask. From midnight to 2:15am I sat by the bedside holding Bill's hand and watching him. Margy tried to get some rest during this time. I went to bed around 2:30am and was awoken to help Margy at 3:15am. Bill had gotten up and needed to get to the bathroom but was tangled with his various lines and equipment. As I tried to untangle him, he became combative, harmful and delirious. Between the medicine and the kidney function not working properly he was not himself. We did not get any sleep for the rest of the evening. The doctors could not sedate Bill due to the kidney function getting worse. During the morning rounds Dr. Mishra informed us that Bill's condition was not good and that he had acute kidney insufficiency. Normal creatinine level is 1.0 for someone Bill's size, he was up to 3.7.

From Wikipedia - Creatinine is filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise.

His BUN level was 54, normal is between 7 and 20.

From Wikipedia - The BUN ( Blood Urea Nitrogen) test is a measure of the amount of nitrogen in the blood in the form of urea, and a measurement of renal function. Urea is a substance secreted by the live, and removed from the blood by the kidneys.

Basically he was starting renal failure. Bill was running a fever, had fluid overload on the lungs, X ray showed opacity which could indicate an infection or Pneumonia, mental status changes and the BK virus earlier than they would expect which could indicate that other virus' may present. If his breathing worsened we might have some decisions to make regarding intubation. Most of his medications were changed to reduce the fluid intake to allow his lungs to remove the fluid. Some of the changes were made to reduce the impact on the kidneys. The doctor suggested we get some family members to come and be around Bill to help him over this speed bump. We made some calls and his family was here by 8:00pm the same Day.

His father (Sam), brother (Ed), Sisters (Lue, Marietta), Daughter (Marie) came in from New York/New Jersey. Margy was already here, his son Billy who lives in Deltona, Florida was here by 1:00pm. The following day his niece (Mollie) and daughter-in-law (Johanna) also came. Bill was in and out and did not really know they were there.

Day 11 - Saturday, November 20th, 2010 - (Happy Birthday to Mike's sister Barbara and niece Sarah)

Saturday for Bill and I started around 2:00am. It was a great beginning!!! He got up and went to the bathroom and when he came out he was back to himself. The delirium had passed, he was still dealing with the other problems from the day before. We did get a few hours sleep before his family returned to be with him. He did not really remember seeing them the day before, but he was very happy to see them, especially his father who does not like to fly. We had a really nice day with his family.

The creatinine level came down to 1.9 and the BUN came down to 41. Both indicating that the kidney is starting to work again and do its job.

Bill with his dad

Bill with his son Billy and his daughter Marie

Day 12 - Sunday, November 21, 2010

The family were on their way back to their respective homes by 8:00am with the exception of Marie who was staying until Monday. The creatinine and BUN levels were maintaining. The BK virus causes bleeding in the bladder and spasms, so the continuous bladder irrigation has not been stopped as the doctors want to prevent clots. Due to the kidney problems they were not able to start treating the BK virus.

Bill started with really bad mucocitis. He is not able to swallow liquids or solids without pain. I have never seen anything like this in someone mouth. sores and cuts everywhere. Bill's tongue is swollen and he is having difficulty speaking.

From Wikipedia -Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment.
Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy and hematopoietic stem cell transplantation. As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.

Day 13 - Monday, November 22, 2010

WBC - 1,870 / Neutrophil count 440

Today is the first day that the blood work is showing signs that the stem cells are grafting!! Successful grafting is when the neutrophil count is greater than 1,000 for two consecutive days.

The mucositis is at its worst. Bill has not eaten any food for almost 5 days, this started with the kidney failure. The doctors have decided to start Bill on TPN to get him some nutrition.

From Wikipedia - Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas that contain nutrients such as salts, glucose, amino acids, lipids and added vitamins. It is called total parenteral nutrition (TPN) when no food is given by other routes.

Bill is still having trouble from the BK virus. He is still on the CBI, blood in the urine and pain from the bladder. Every morning Bill runs a fever around 101. So far, other than the BK virus and the bladder infection, Bill has not tested positive in any of the many cultures that have been performed.

the next post will cover day 14 through 16.

Post # 45 Things are going well !!!!!

Day 2 through 4 went well for Bill. He continues to eat well and get his exercise. Day 4 was the first time Bill experienced a brief bout of nausea post transplant. Considering the high dose chemo he received, Bill is doing very well. Today is day 5 and I noticed an increase in fatigue.

Below is a table of his blood counts since T minus 3 days though this morning:

11/6 11/7 11/8 11/9 11/10 11/11 11/12 11/13 11/14
T-3 T-2 T-1 Day 0 Day 1 Day 2 Day 3 Day 4 Day 5

WBC 5.05, 4.54, 4.21, 3.80, 2.26, 1.04, 0.45, 0.20, 0.09
Hemoglobin 11.40, 11.30, 11.30, 10.90, 9.60, 9.80, 9.70, 9.60, 9.50
Platelet 97, 88, 102, 102, 102, 78, 73, 53, 39

An interesting note: A day after chemo ended we noticed an increase in all of Bill's levels which was opposite to what we had expected. According to the doctors this is expected since what is in the bone marrow is pushed out by the chemo and shows up in the blood stream, causing the levels to increase temporarily.

We are now entering the period of time when Bill is most at risk for infections. The only defense mechanism that he has is the drugs that he is receiving every day (see post #42 - 11/7/10).

WBC's fight off infections. As I mentioned, the drugs are acting as the WBC's since Bill has hit zero.
Hemoglobin (Hgb) in the blood transports Oxygen from the lungs to the rest of the body. When Bill's Hbg is less than 8 he will need a transfusion of 2 units of packed red blood cells (PRBC). Today his count is 9.50. Red blood cells have a life expectancy of approx. 3 months.
Platelets (Plt)- When platelets are too low, excessive bleeding can occur. When Bill's Plt's are less than 10 he will need a transfusion of 4 units of platelets. Platelets have a life expectancy of approx. 5 days.

During rounds today the doctor said Bill is in the best condition they could expect on day 5.

I was helping Bill get dressed yesterday and after he put on his shorts, I handed him a shirt and he gave it back to me. I asked what was wrong with the shirt and Bill replied it does not match the shorts. Even with the fatigue and weakness Bill insists his clothes must match.

Visitor corner: The following friends and family were in to visit with Bill this week:
Friends: Jadzia and Eddie, Jeff
Family: Margy, Lue and Kelli

Now on to technical information
New Drugs that I have not previously mentioned:

On Day Zero - November 9th, 2010 Bill started on Mycophenolate Mofetil (Cellcept) 1000mg IV every 12 hours. This drug is given twice a day for two hours to prevent Graft Versus Host Disease (GVHD).
From Wikipedia "Graft-versus-host disease (GVHD) is a common complication of allogeneic bone marrow transplantation in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack".
After bone marrow transplantation, T cells present in the graft, either as contaminants or intentionally introduced into the host, attack the tissues of the transplant recipient after perceiving host tissues as antigenically foreign. The T cells produce an excess of cytokines, including TNF-α and interferon-gamma (IFNγ). A wide range of host antigens can initiate graft-versus-host-disease, among them the human leukocyte antigens (HLAs). However, graft-versus-host disease can occur even when HLA-identical siblings are the donors. HLA-identical siblings or HLA-identical unrelated donors often have genetically different proteins (called minor histocompatibility antigens) that can be presented by MHC molecules to the donor's T-cells, which see these antigens as foreign and so mount an immune response.
While donor T-cells are undesirable as effector cells of graft-versus-host-disease, they are valuable for engraftment by preventing the recipient's residual immune system from rejecting the bone marrow graft (host-versus-graft). Additionally, as bone marrow transplantation is frequently used to treat cancer, mainly leukemias, donor T-cells have proven to have a valuable graft-versus-tumor effect. A great deal of current research on allogeneic bone marrow transplantation involves attempts to separate the undesirable graft-vs-host-disease aspects of T-cell physiology from the desirable graft-versus-tumor effect.

Types
Clinically, graft-versus-host-disease is divided into acute and chronic forms.

The acute or fulminant form of the disease (aGVHD) is normally observed within the first 100 days post-transplant,[2] and is a major challenge to transplants owing to associated morbidity and mortality.[3]
The chronic form of graft-versus-host-disease (cGVHD) normally occurs after 100 days. The appearance of moderate to severe cases of (cGVHD) adversely influences long-term survival
Classically, acute graft-versus-host-disease is characterized by selective damage to the liver, skin and mucosa, and the gastrointestinal tract.

Twice since starting Tacrolimus Bill has required Magnesium sulfate in Fluid 50ml 2 gm IV. Tacrolimus is used as an anti rejection drug. Tacrolimus is known to waste magnesium in the body. The treatment of Magnesium Sulfate is to maintain the bodies levels and replenish what Tacrolimus has wasted.

Post #44 - Happy New Birthday - Bill is one day old

Day zero - November 9th, 2010 at 11:42am Bill began to receive his new stem cells. The process was non-invasive and only took about an hour. The nurse set up the room, brought in the bag of Ed's stem cells, which looked like tomato soup, and hooked it up to to Bill. The process can be compared to getting a blood transfusion.

Ed, Margy and I did not let the non event of the process stop us from having a party. We had banners, cards, gifts to unwrap and pie. The pie was topped with a zero candle (we did not light it). Thank you to everyone for your calls, prayers and well wishes.

Even Stem Celly joined in for the celebration.

Margy and Ed left yesterday to go home to their respective families.

Day 1 - Today was a good day for Bill. Eating well and getting his exercise. Each day since chemo ended Bill's levels have gone down. Day 5 - 6 is when it is expected that his levels will be at their lowest.

Post #43 Tomorrow is transplant day!!!!

Today was harvest day for Ed; At approximately 9:45am the process began. Ed was hooked up to an apheresis machine where his blood was removed from one arm, ran through the machine to separate out the stem cells and then the other components of the blood were returned through the other arm. A normal collection of stem cells can take in excess of 4 to 6 hours on the first day and in some cases require more time on a second day. Ed's stem cells harvested in 3 hours and 12 minutes. The staff were very impressed with the speed at which his process ran. A special thanks to Margy for being Ed's caregiver during the harvest.

Words cannot express the gratefulness we feel for the gift of life Ed is providing. Thank you Ed.

As for Bill, today was a better day than yesterday. His body is still adjusting to the effects of the chemo and he still has fatigue. We are excited about tomorrow, day zero. This is Bill's new birth date and new beginning.

Post #42 - Tomorrow is T minus 1 day

Today Bill started to feel the effects of the chemo. He was very fatigued and had a diminished appetite. In addition to having effects from the chemo he is also taking many pills that cause drowsiness.

On Wednesday, November 3rd Bill started on Dexamethasone (Decadron) 8mg by mouth every twelve hours. This drug is a steroid and is given as an anti inflamatory and helps zofran work better. Bill will be on this drug until day T minus 1, which is tomorrow.

On Wednesday, November 3rd Bill started on Doxycycline Hyclate (Doryx) 100mg by mouth twice a day. This drug in an antibiotic that is given to prevent a line infection from the triple lumen catheter. Bill will be on this drug for about a month.

Yesterday Bill started on Tacrolimus (Prograf) 2.1 mg IV every 24 hours. This drug is given to prevent rejection of the transplanted stem cells. Bill will be on this drug 24 hours a day, via a caddy that he carries with him. At the time of discharge the drug will be changed from IV to pill form. Bill will be on Tacrolimus for about six months. From Wikipedia "Tacrolimus (also FK-506 or Fujimycin) is an immunosuppressive drug that is mainly used after allogeneic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. It reduces interleukin-2 (IL-2) production by T-cells".

Yesterday Bill started Ciprofloxacin (Cipro) 500mg by mouth. This drug is given to prevent bacterial infections. Bill will be taking this drug twice a day at least until discharge and maybe longer.
From Wikipedia "Ciprofloxacin (INN) is a synthetic chemotherapeutic antibiotic of the fluoroquinolone drug class.[2][3] It is a second-generation fluoroquinolone antibacterial. It kills bacteria by interfering with the enzymes that cause DNA to rewind after being copied, which stops DNA and protein synthesis".

Today Bill started Cefdinir (Omnicef) 300mg by mouth twice a day. This drug is given to prevent bacterial infections. As of right now, Bill is scheduled to take this drug for about a month.

Today Bill started Acyclovir (Zovirax) 800mg by mouth twice a day. This drug is given to prevent viral infections. As of right now, Bill is scheduled to take this drug for about a month.

Today Bill started Micafungin (Mycamine) 50 mg IV once a day. This drug is given to prevent fungal infections. As of right now, Bill is scheduled to take this drug for about a month.
From Wikipedia "Micafungin has been approved for the prophylaxis of candida infections in patients undergoing hematopoietic stem cell transplantation".

Bill had visitors today. His sister Margy and her husband Gary and our friend Mary Ann. Ed's daughter Cristina also came by.

Today Ed received his last injection of Neupogen. Tomorrow morning at 8:00am Moffitt will start to harvest Ed's stem cells. The process is scheduled to take about 4 - 5 hours.

Post #41 - T minues 2 Days - An emotional milestone!!!

About 25 minutes ago, Bill started his last round of chemo. The nurse came in and said this is the last bag of chemo I hope you will ever need. We both stopped in our tracks because it hit a good nerve.

Post #40 T minus 4 days to transplant

On Tuesday, November 3rd, Bill and I moved into the Bone Marrow Transplant unit at Moffitt Cancer center. Below is a picture of moving day. Unfortunately no one was there to help Bill move in, it is a good thing they had an extra wheel chair. (only kidding)

It did not take long for Bill to make the room feel just a little bit like home. Have Betty Boop, will travel thanks to Julia.

For those of you that are interested in seeing what the triple lumen catheter looks like when implanted, see below. Viewer discretion is advised.

Ed was quick to make sure Bill had a mascot for the room. Please meet Stem Celly.

Ed started his Neupogen injections yesterday. Today he received his second injection and has two more to go. Below is a picture of Ed before his second injection.

For me it is business as usual, come take a peek at my office

Tonight Bill started his third round of chemo. The Busulfan dose was adjusted tonight based upon the blood sent out to PA. So far the treatments have been going well. The staff have been great and very accommodating.

The room we are in is very spacious. I have an alcove with a desk that I use for work. I have a love seat couch that opens into a bed and am very comfortable.

This evening Ed and I went to dinner with his daughter Cristina and her boy friend Sean. We found a great Thai restaurant in St. Petersburg Beach.

October 30th, we visited with Bill's son and family. The grand kids were dressed for Halloween as Luigi and Mario.

Post # 39 - T minus 6 days and counting......

Monday evening we arrived in Tampa for the next leg of Bill’s journey. Tuesday morning at 8:15 Bill had a surgical procedure to implant a triple lumen catheter. Tuesday evening Ed arrived from NY and is ready to donate his stem cells.

Picture of implanted triple lumen catheter

Today - Wednesday, November 3, 2010 Bill will be admitted to the hospital for his bone marrow transplant. Bill’s schedule for the next week is as follows:

T minus 6 days (11/3/10):
Admission around 2:00pm
Start high dose chemo at 7:00pm
-Pre-meds: Ativan, Zofran and Decadron
-Chemo - Fludarabine IV over 1 hour
-Chemo - Busulfan IV over 3 hours
Blood will be sent to a lab in PA to test busulfan levels to get dosing correct

T minus 5 days (11/4/10):
Day two of high dose chemo – same as Day one
Ed gets first injection of Neupogen
Final launch of space shuttle Discovery (postponed until end of November)

T minus 4 days (11/5/10):
Day three of high dose chemo – same as Day one
Ed gets second injection of Neupogen

T minus 3 days (11/6/10):
Day four of high dose chemo – same as Day one
Start IV Tacrolimus (Prograft) – Immunosuppression
The Tacrolimus suppresses T-cells and causes magnesium wasting
Ed gets third injection of Neupogen

T minus 2 days (11/7/10):
Rest – no chemo
Start the following preventative drugs:
-Acyclovir – Prevents viral infections
-Omnicef – Prevents bacterial infections
-Micafungin – Prevents Fungal infections
Ed gets fourth and last injection of Neupogen

T minus 1 days (11/8/10):
Rest – no chemo
Harvest Ed’s Stem cells

T minus 0 days (11/9/10):
Stem cell infusion (bone marrow transplant)

As we move forward, my updates and posts will be more frequent.

post # 38 - T minus 19 days to Transplant

Last week Bill had his appointment with the transplant doctor to review his entire vital organ testing results. His PFT results were above the predictive value, The PET/CT was negative, the MUGA Scan was perfect, the Chest X-ray was normal, the CT of the sinus was normal, the spleen had a minimal enlargement, The bone marrow biopsy was normal - no variance of T-cell prolymphocytic Leukemia, no T-cell receptor gene rearrangement., Kidney is normal. In short the doctor finished the appointment by saying “Bill is physically, mentally and disease wise in the best shape he could be in for a bone marrow transplant”. That was the best news we could ever hope for.

We have one more trip to make before the transplant. On October 28th, Ed will be at Moffitt getting his testing completed and meeting with the transplant doctor. During the same time Bill, Margy and I will be attending the transplant caregivers class which is two to four hours in length. Bill will also have his final examination with the PA
.
As we get closer to the transplant date my updates will be more frequent. Thank you for following the blog up to this point. Please continue to follow as we embark and the next phase of the journey.

Post # 37 - We have a transplant date!!!

First I would like to start off by thanking everyone for their condolences and prayers the last two weeks. My father, Martin Sitowitz, passed away on Monday September 13th, 2010 unexpectedly, at the age of 75. As Bill always says “Life as we know it can change in a moment”. My father, Martin, touched a lot of lives and will be missed.

Now I need to bring you up to date on what has happened in Bill’s journey for the last four weeks. Bill’s WBC count for the past four weeks has been hovering between 1.0 and 1.4; therefore he never did get his next round of Cladribine and will not receive anymore. In total Bill did three rounds of Cladribine or 15 treatments. After missing one week of Campath, the doctor started Bill back up on Monday September 6th. As of today Bill has two more treatments and then he will be done with Campath. In total, as of this Friday, Bill will have received 47 injections of Campath.

Treatment is ending because we have a date for Bill’s bone morrow transplant, November 9th, 2010. His treatment is ending because the doctors want to give Bill’s system a rest so he can build up his counts prior to the transplant.

Yesterday and today Bill had his vital organ testing. It was an action packed scheduled and everything went as planned.

Monday Bill had the following tests and appointments:
*Pulmonary Function Testing – 1 vial of blood
*Meeting with the social worker
*EKG
*Chest X-ray
*Blood work – 19 vials of blood
*Tour of off site apartments
*Campath injection
*MUGA Scan for heart function – 1 vial of blood – A nuclear medicine test to evaluate the function of the heart ventricles.
*Tour of inpatient unit and patient rooms
*CAT scan of chest and sinus

Today, Tuesday Bill had the following appointments:
*Meeting with the primary nurse
*Bone Marrow Biopsy (4th)
*Appointment and examination with the PA

During the appointment with the PA we learned that all the tests performed on Monday showed good results, which means physically Bill is fit for the transplant. On October 13th Bill has the following appointment:
*Meeting with Psychologist
*Outpatient Pharmacy to discuss post transplant medications
*Meeting with Dr. Ayala, transplant physician

During the meeting with doctor Ayala, he will review all the results from the tests performed the last two days, the biopsy results and then both Bill and the doctor will sign a contract, Consent for high dose Busulfan and Fludarabine and Allogenic Hematopoietic Cell Transplant.

After October 13th we have the following schedule:
*Thursday, October 28th Bills brother Ed will come to Tampa to have his testing before Moffitt harvests his stem cells.
*Tuesday, November 2nd Bill will get a triple lumen catheter surgically implanted.
*Tuesday, November 2nd, Bill, Margy and I will attend caregiver orientation.
*Wednesday, November 3rd Ed starts four days of Neupogen shots to stimulate stem cell growth and to move them from the bone to the blood.
*Wednesday, November 3rd Bill is admitted to the hospital and starts four days of high dose Busulfan and Fludarabine.
*Monday, November 8th Moffitt will harvest Ed’s stem cells. If they don’t get enough on the 8th they will harvest the remainder on the 9th.
*Tuesday, November 9th is Bill’s transplant date.

Following the transplant the uphill climb begins. Today we learned that the side effects from the high dose chemo will be felt the following week and then the journey to engraftment begins. Bill will be in the hospital for 4 to 6 weeks. Once he is discharged we will move into the hospital owned apartment in the Lodge at Lakecrest, which we toured yesterday. The apartments are beautiful and have everything we will need for the remainder of our stay in Tampa.

Below is a picture of Bill with a few members of the infusion center team in Titusville


Until next time.....

Post # 36 - Mike's father           

Due to Mike's father passing away,( Marty will missed ) we are not up to date with the blog. I can't quite write the way Mikes does, so I will make it brief. I finally have a date to be admitted to the hospital for the transplant ( November 3rd. ) Mike will give all the details over the weekend. I appreciate everyone continuing to read my blog. Stay tuned!
Bill

Post #35
Another ride on the roller coaster - hold on for a small drop

In Bill's words "I got ripped off this week, no chemo treatment". The blood count is too low to continue treatment this week. The WBC is 1.0, which is the lowest we have seen since treatment started. The Dr. wants to give Bill's system a rest to bounce back on it's own, prior to starting up with both Campath and Cladribine on Monday, September 6th.

Tomorrow Bill will have a mid week blood test to see if the numbers are moving in the right direction.

Now that we have a donor, the next step is for Dr. Ayala, the transplant Dr., to review the slides from the most recent biopsy to see if we can get the show on the road. If he concurs, there is a chance that Bill will not need to have another biopsy done before the transplant.

Speaking of donor's, here is a picture of Bill's brother Ed

Last week when the infusion center team found out that Bill had two perfect matches they took the time to put up congratulation signs and they gave him a card and flowers. They were all so happy for Bill. Although we don't like the disease Bill has or the treatment he is going through, the people that he deals with at the infusion center care about him and treat him as a friend. In Bill's words "Besides my family and my friends, they are also my rock"

Post # 34
Today is a great day!!!!!!

At 4:00pm today we received the news that two of Bill's siblings (Edward and Lucille) are 100% (10 out of 10) matches for Bill's bone marrow. That is the best news that we have received in the last 11 months. Dr. Ayala (bone marrow transplant doctor) has indicated that he prefers to have Edward since he is a male. Although Lucille is a perfect match, there is a slight increased chance of side effects due to her having had a baby. The great news is, we have a primary and a back up donor.

Ed will need to be in Tampa for 12 to 14 days. The first several days will be testing on Ed to make sure everything is in order with his vital organs, blood work, etc.... Once everything comes back good, the next step is to start Bill on preparative regimen (Chemo). At that same time they will start the process to harvest Ed's stem cell's through peripheral blood.

We also received the bone marrow biopsy results today by phone from Dr. Castro. The markers that were present in the first and second bone marrow biopsies indicating the presence of the disease are no longer present. The molecular analysis (T-cell rearrangement) shows two suspicious items that are to small to identify. Dr. Castro believes this is a great report. More good news today!!

The next step is to share the report with Dr. Ayala at Moffitt and Dr. Epner at Hershey. They will confer to determine how to proceed.

Wednesday Bill will receive his next scheduled injection of Campath. Treatment will continue until further notice.

Sharing some family photos:

Mike and Bill

Bill and his sister Lucille

Mary Ann (friend), Mike, Bill, Margy (sister) and Assunta (sister in law)

Mike's nieces and nephews: Stephan, Ryan, Alex, Sarah, Hannah, Sean, Samantha

Bill's son - Billy, grandson - Anthony and father - Papa Sam

Bill's daughter - Marie

Bill's Grandson's - Adrian and Alex

Post #33

Two weeks to go to hit 3 months of treatment

Yesterday was a good day. Bill was feeling good and had lots of energy.

Bill went to the infusion center for his Campath injection. His blood work shows that the Neupogen did its job. His WBC is now up to 7.6, which is in the normal range. His Neutrophil is 7.1, which is at the high end of normal. The great blood results does not change how Bill goes through his day because we have learned that the Neutrophil count can change quickly. It is not worth the risk to change his eating habits (Neutropenic diet) only to find out the next week that the levels have dropped. At the end of the month, which is only two weeks away, Bill will hit the three month mark. We were always told that he would have Campath for three months. We did confirm that if the biopsy results come back with Bill in remission, he would still need to get the injections until he receives the transplant.

After the injection we had an appointment with Dr. Castro. The Dr. thought we would have preliminary results from the bone marrow biopsy on Monday. That did not happen, however he did say he should have them Wednesday and via phone he would let us know the results. The preliminary results will show if there are any signs of the disease. The final results which will take a few weeks will check the T-cell arrangement and show if Bill is in molecular remission.

Tomorrow is the PET/CT scan at the hospital where I work. The purpose of the exam is to measure the spleen to determine if the size is back to normal. These are things that need to to be checked before the transplant.

On Sunday Bill and I downloaded Skype and had our first video conference with his son William (Billy). The installation process was very easy and we were up and running within a few minutes. The program is very easy to use. We have installed it on my lap top so we can bring it with us where ever we are. It is so nice to know that we will be able to see our friends and family during the next 12 to 15 months via video, especially during the three months that we will be in Tampa, FL. In the next few weeks we would like to test Skyping with any of our friends and family that have a camera and microphone on their computer. Our Skype name is Michael.Sitowitz

Post #32
Last week was a busy week

Last week was busy for treatment. Bill had seven injections of Neupogen, three Campath injections and a bone marrow biopsy. Before the Neupogen shots started, Bill's WBC was down to 1.0. Today before the Campath injection his blood will be checked and we will know how the Neupogen helped. I cannot believe we are in the third month of treatment already.

The bone marrow biopsy went well on Thursday. In the next two weeks we will be getting the results of the HLA testing of the siblings and Bill's bone marrow test. We are praying for good news.

All in all, with the exception of some minor side effects from the Neupogen, Bill has been feeling well. For the next week or so I will be posting one a week, unless something interesting comes up. As we progress towards transplant the posting will become more frequent.

Thanks for your comments and concerns and well wishes, they are much appreciated. Please do keep the comments coming!!!

Post #31
Today is the bone marrow biopsy

Today Bill will have his third bone marrow biopsy. This one is important as it will determine if Bill has achieved remission. Bill's sister Margy will be bringing him to the procedure and staying with him. The PET/CT were delayed and have been re-scheduled for next week.

My sister Nancy and her family were in from Windsor, CT and visited through out the week-end. We had a nice time with them.

Bill completed the five days of Cladribine with no problems. Monday when his blood work was checked his levels were very low, which is to be expected. He is getting the Neupogen shots again to boost his white cells for seven days. He started on Monday and will finish this coming Sunday.


We are one week post sibling kits being returned for HLA testing, we are anxious for the results, but it will be at lease another week, most likely two.

Error correction: In post #30, I stated that the bone marrow transplant was to be performed at my hospital. That was an incorrect statement. It should have read, the bone marrow biopsy will be performed at my hospital. This has been corrected in post #30. The bone marrow transplant can only be done at a transplant center. We are planning the transplant at Moffitt in Tampa, FL. I do apologize for any confusion it has created. Thanks to Marty for pointing this out.

Post # 30

Several tests to be performed

Monday we went to Dr. Castro to get a check on Bill's status. Several vials of blood were taken to test more than just his CBC. We did see a response to the Neupogen, nothing like the first round.

2.59 WBC

2.00 Neutrophils - Just enough to fight infection

0.22 Lymphocytes

We received an update on the second opinion for the bone marrow biopsy and it was not what we were expecting. The slides were not sent to NIH in Bethesda, MD. We requested that Dr. Castro call the lab at Moffitt and tell them the patient has requested the slides to be sent for the second opinion. We are hoping that will do the trick. It is very important to me that the second opinion is received to have piece of mind with the diagnosis.

Bill has been scheduled for a round of testing to determine if he has achieved remission.

8/10/10 - A PET/CT scan will be performed to determine the exact size of the spleen.

8/12/10 - The third bone marrow biospy will be performed - Bill's sister Margy will be the caregiver for the day. Help that is greatly appreciated.

8/16/10 - Follow up visit with Dr. Castro

The bone marrow biopy will be performed at Parrish Medical Center in Titusville, FL which is where I work. This is great news as we will not need to travel to Moffitt in Tampa. Since we are at least a month or two out from a possible date for the bone marrow transplant, it is not critical that we go to Moffitt this time. We were informed that just prior to the transplant Bill will need to have another biopsy done (#4), that one will need to be performed at Moffitt.

As of today all kits that were sent out to the siblings have been returned to Moffitt. They should have the last one by 10:00am tomorrow. In the afternoon we will call to confirm receipt.

This week is the IV drip, with Cladribine, every day Monday through Friday. As of today the count is as follows:

25 Campath injections

12 Cladribine - IV treatments

15 Neupogen Injections

24 Blood Draws
Neulasta

Pictures of Bill with the staff at the infusion center.

Bill with Janine

Bill with Ollie

Bill with Sylvia