DAY 372 - HAPPY BIRTHDAY

My last update was on December 15th, Jan’s birthday. Last week we celebrated Jan’s new birthday……..March 4th. It was on March 4, 2008 that Jan received her bone marrow transplant, was re-born, and given new life. In the past few months things have gone well. Jan had her one-year biopsy, and remains free of leukemia. She feels well, and continues to regain her strength. We had a very enjoyable Christmas, followed by a trip to Brunswick, Georgia to visit her sister Elaine’s “home away from home”. The trip went well, and we hope it will be the first of many more vacation trips. The biggest event of the past couple of months was the arrival of our granddaughter, Isabella. She’s beautiful, healthy, and a joy to be around. Isabella became our second grandchild on February 18th. Our first grandchild, Lucas, is doing well in Salt Lake City. He’ll be five on April 12th. He’s smart, good-looking, and all-boy rugged. I retired from the Postal Service on January 2nd, so Jan and I now have the time to do whatever we want. We feel very fortunate to be surrounded by a supportive and loving family. To those of you who still get updates from this blog…………thank you. We appreciate all of you. I apologize for the lack of postings, but the reality is that our days now are uneventful and routine, which (compared to 2008) is really a blessing. I hope you enjoy the photos of Lucas and Isabella.

T Plus 286

Who says birthday presents have to cost a lot of money. Some don’t cost a dime. Today was Jan’s birthday and she received one of the best gifts ever. Her doctor told us today that her biopsy, which was performed on December 1st, was negative. He said he was extremely pleased with her health. All her labs were right on track. Happy Birthday Jan. This time last year, Jan was just two weeks removed from six weeks in the hospital and two rounds of chemotherapy. Last year we decided to forego her birthday, as well as Christmas. Instead, we were reading literature about bone marrow transplants, and hoping that one of her siblings would be a match. What a difference a year makes. That ordeal is now behind us, and better days lie ahead. Of course, Jan also got a present today which required unwrapping…………a new camera. She’s looking forward to taking a ton of pictures of grandson Lucas, and granddaughter Isabella (due to arrive February 24th). Today also marks another anniversary, of sorts. It was exactly a year and two months ago that Jan was diagnosed. During that journey, some days seemed never-ending. And yet, it’s hard to believe that fourteen months have passed. We feel very blessed. With each passing week, Jan continues to improve. Her hair is growing back with a flurry, and as her steroid medication continues to be tapered down, she is starting to slowly regain her strength and stamina. As you might expect, we had moments during the past year when we dreaded tomorrow. However, now we look forward to tomorrow, next week, next year, and beyond. We wish everyone a very happy holiday season, but mostly, we wish you all good health.

DAY - 231

Sorry about the long delay since my last update. Thanks to those of you who still check the blog for updates. The past two months have been fairly uneventful. The days where everyday was a new adventure are becoming fewer and farther in between. Jan is doing well. She continues to tire easily, and her stamina is still in recovery mode. She has had some issues with dizziness, and we are in the process of running some MRIs to rule out anything that might be related to her serious fall on June 26th when she hit her head on our brick fireplace and ended up in the ER. So far, all the tests have been negative. Her September bone marrow biopsy was negative, and all of her labs are within normal limits. Her next biopsy will be done in December. We went to Berns Steak House for our anniversary last month (37 years !), and she's been to a USF football game as well. It's hard to believe, but last week (Oct 15th) was the one year anniversary of her diagnosis. A lot has occurred since then. Hopefully, as we continue to reduce her medications, her strength and endurance will start to return. Her hair has started to grow back with a flurry and her appetite is good. All in all, life is good. The USF Bulls, the Bucs, and the Rays are all winning, grandson Lucas is getting to be a big boy, granddaughter Isabella will be arriving in about four months, cool weather is on the horizon, and my retirement is just 49 work days away.

DAY - 189

I've held off posting any new blog entries until I received the results of Jan's most recent bone marrow biopsy which was performed last Tuesday. Well, the hospital just called a few minutes ago and said that the results of the biopsy were negative, and that there was no evidence of the leukemia. That, combined with the fact that all her lab results last week were perfect, is music to our ears. Jan is still having some infrequent issues with dizziness and short two-minute-long headaches, but those are manageable and will hopefully improve in time. She's been slightly under the weather the past few days, nothing specific, and hopefully this too will pass. Her overall strength is improving slowly, but her stamina and endurance is still lagging, and she's generally fairly tired by mid-afternoon. Generally, we're pretty happy to be at Day-189 with no significant problems to report. To those still reading the blog........."thank you for your interest, prayers, and support".

DAY 164

You’ve heard the old adage that “no news is good news”, well that’s the case here. The past three weeks have been good to Jan. First, we have avoided any new setbacks. That in itself is a new and welcome accomplishment. Her last two lab checks continue to show elevated liver function numbers, so the increased dosage of Prednisone will continue a little longer; but the rest of her lab results look good. Her strength is slowly returning, although she continues to fatigue fairly easily. Especially good is the fact that her back has improved and no longer causes her the pain and discomfort that she was experiencing a few weeks ago. She still gets occasional headaches or dizzy spells when she gets up from a seated position, but fortunately that only lasts a few minutes. We’re not exactly sure what’s causing that, but we think it may still be residual effects from her serious fall that resulted in her head injury and visit to the ER via fire rescue. She is scheduled for another bone marrow biopsy on September 2nd, which is routinely done six months after transplant. Keep those thoughts and prayers coming……..obviously SOMEONE is listening.

DAY 141

Well, finally I can say that things are starting to improve for Jan. At our last doctor's visit Jan complained of headaches and dizziness when getting up from a seated or reclined position. The doctor didn't really offer any reasonable explanation other than to suggest that she may still be suffering some residual effects from her fall three weeks ago that resulted in our emergency room visit. He wants to just take a 'wait and see' approach. Fortunately, the headaches and dizziness have become less frequent in the past several days. The severe back pains that she had also had improved, so the planned steroid injection procedure was cancelled. The unexpected news that we received at that doctor's visit was that Jan's liver function tests were abnormally high. As a result her steroid medication (Prednisone) was increased to 20mg daily. We were disappointed to learn that we needed to increase the steroids, knowing all the unpleasant side effects of the medication. Once the liver function test results improve, we expect the steroids to be reduced again. We have more labs, and a doctor's visit, next Tuesday. In the meantime, Jan's mobility is improving, although at a slow pace. Her back pain continues to be bothersome, but not to the extent that they were a few weeks ago. All in all, things are moving in good and positive direction. We haven't had any major setbacks in the past two weeks, so that's progress!

CANCER IS HARD

During the past nine months I have learned that cancer is hard. In the future, I will always have a profound respect for anyone dealing with this disease. As I reflect on these past months, it’s hard to believe what Jan has had to endure, including…………

Three months in the hospital
Three months in an apartment near Moffitt
Over 700 tubes of blood drawn
Three rounds of chemotherapy
Mouth sores
Hallucinations
Two bronchoscope procedures to identify pneumonia infections
Four gastro intestinal biopsies to confirm Graft vs. Host disease
Numerous CT Scans and MRIs
BK virus infection causing one month of incontinence
E-Coli infection
Fungal pneumonia
Eight bone marrow biopsies
Two compression fractures
Kyphoplasty procedure to repair the spinal fractures
Steroid induced diabetes
Weakened muscles and puffy face associated with high dose steroids
Numerous episodes of dehydration and hypertension
Several blood and platelet transfusions
Anxiety and depression
Patchy skin
Nausea and headaches
Several falls, one serious which resulted in hitting her head on our brick hearth and requiring a 9-1-1 call, emergency room visit, and CT Scan.

However, through it all, Jan has persevered. I wonder sometimes how she has managed to cope. I don’t think I would have done as well. We still have some hurdles, but we see brighter days ahead. Today is Day-129 post-transplant. Each day brings us closer to better health.

DAY - 121

Well, today marks one week since Jan's emergency room visit last Thursday. She still has a baseball size bruise on the back of her head, but has not experienced any aftereffects of the accident. She does not recall that day at all, and in many ways, that may be a good thing. She is still experiencing low back pain which can range from a bothersome ache, to a sharp and extremely painful episode. Today we met with a nurse practitioner who deals with Pain Management. She advised that we increase the dosage of Oxycodone. The problem with these narcotic drugs is that they make Jan very drowsy. While it does subside the pain, it doesn't really help efforts to regain the strength and stamina that she still needs to improve on. So, one day at a time, one problem at a time. Right now we will work on getting her some relief from the back pain, then we'll work on building up those muscles that have been weakened so much by the steroid treatments. We are scheduled to meet with another member of the Pain Management Team on Monday and consideration will be given at that time on whether or not to administer steroid injections directly into the painful area of the back in hopes of reducing inflammation and pain.

DAY - 115

Yesterday was not a good day. For the past week Jan has continued to have low back pain similar to the compression fractures she had surgically repaired last month. So far, the MRI and CT scans have not displayed any renewed fractures, but the pain persists. We met with the neurologist who performed her back surgery and she ordered a new CT Scan, this time with contrast. We are waiting for the results. In the meantime, Jan continues to be weak on her feet, and still needs aid at times to stand up and move about. Yesterday, while I was at the office working, she fell hitting her head on our brick hearth. She does not recall how it happened, but there was a lot of bleeding. She managed to crawl across the room to a telephone and call me. When I arrived at home and saw the amount of blood loss I immediately called 911. My main concern was internal bleeding. With her low platelet count, any bleeding can become critical in short order. Within ten minutes two Fire Rescue units arrived and we had six paramedics in the house attending to her needs. She was strapped to a flat board, with a cervical collar and taken to Brandon Hospital. She had to remain strapped and secured until after the head and neck CT Scans had been run and reviewed. Fortunately the results were negative. No scull fractures and no internal bleeding. She was released last night and appears to be OK. So, the struggle continues and we just hope for better days soon.

Thankful

I know that most of you don’t know who I am so I’m going to give a brief introduction. My name is Kim and I am Jan and Tony’s daughter-in-law. I became a part of their family long before Jason and I were married. They are the most loving and accepting people I have ever met and not until Jan got sick did I realize how lucky I was to be a part of their family. Through all the ups and downs (there are too many to count) that we’ve been through in the last nine months, Tony and Jan have not only mustered incredible strength but shown what it is to truly love and care for another person.

Although Jan and Tony are just returning home today they have occasionally spent time at their home in Valrico. One such occasion was this past Sunday. The five of us: Tony, Jan, Jeff, Jason and I sat around for the afternoon watching Tiger play in a Major while eating tacos as we have done so many Sundays before. However, this Sunday was quite different for me. It occurred to me as I looked around the room listening to conversation about sports, movies and work that the five of us hadn’t been together like that since January or February. This may not seem like a big deal to some who only see family once or twice a year, but in the Scolaro household we do this almost every Sunday. I learned something at that very moment that I hope to never forget. Every single day that we spend with people we love is a precious gift. It doesn’t matter if you’re watching a movie you’ve seen 100 times or talking about who won the Rays game because you can never get the time back and you never know when it could end.

So to Tony and Jan, for teaching me the most important lesson I’ve ever learned and to all of you out there who have read, posted comments and sent prayers their way, Thank You.

DAY -106

Well, it took a little longer than 100 days, but we are finally going to be packing our bags and heading home tomorrow. Jan still needs to finish out her two week regiment of I.V. anti-fungal medication, which she will complete tomorrow. It has now been one week short of four months since we've been home, so we're ready head back to Valrico. Jan will still require weekly labs, but hopefully the daily clinic visits and repeated hospital admissions are history. She will still be monitored closely, and will still be required to stay on an immunosuppressed diet for a few more months. She's still taking about ten different medications daily, and that will probably continue for many more months. She uses her walker quite a bit, but she does take short walks without it. She is much improved physically from where she was just a few short weeks ago, and we expect her to continue to get stronger each day.

DAY - 102

Well the CT Scan mentioned in the DAY-98 update also showed a pneumonia-looking spot on Jan's right lung, so she was re-admitted to the hospital on Thursday. The medical staff use the term "pneumonia" to classify any type of lung infection. The CT Scan doesn't really identify if it's bacterial, viral, or fungal. The only definitive way to identify the culprit is to collect some cells. Thus, Jan was admitted in order to perform a bronchoscopy with lavage. The procedure involves a fiber optic tube which is inserted into the lung. The affected area is flushed and collected. The collected cells are then examined microscopically and grown in a culture. They did that yesterday morning, and Jan was released from the hospital in the afternoon. A microscopic examination of the cells collected, together with cultures which will be run, should isolated exactly what type of organism we may be dealing with. It may be fungal, and if so, the week-long treatment that she has been receiving should take care of the problem. However, it appears that fungal infections can be tricky to eliminate quickly, and it may take some time. Simple blood tests can't really determine the type of fungus causing the problem. The best any routine labs can do is to identify a by-product of fungal growth called Galactomanan. A positive result only tells you that a fungus is at work, but it doesn't really tell you which specific organism, or where it may be growing. That was the reason for the chest and sinus CT Scans last week. Normally, these organisms grow in the lungs or sinus cavities. We should have a more definitive idea of where we are on Monday when we meet with the Primary Physician. Other than that, as I have mentioned before, Jan continues to get a little stronger each day. We should be headed home to Valrico soon.

DAY - 98

Jan continues to show evidence of a fungal infection, so she has been receiving an I.V. anti-fungal (micafungin) once a day for the past five days and will need to continue this treatment for at least the next five days. Today she complained of some pain and swelling in her throat that was affecting her swallowing and breathing, so a CT Scan and MRI were ordered. The CT Scan showed that one of her implanted catheters had migrated into an area that may be the cause of her discomfort. As a result, her scheduled Thursday surgery to remove the triple Hickman catheter, and replacement of her double port, may be moved to tomorrow.

Her kidney function tests, specifically her creatinine level, have improved slightly and are nearing acceptable levels. We also learned today that her bone marrow biopsy, which was taken last Monday, was negative. We were relieved to get the good news. The week following these biopsies, while waiting for the results, is always very difficult.

Even though we are approaching the magic "100 Days", Jan is not quite ready to be released to go back home just yet. We will meet with her doctor next week when he returns from his two-week Mediterranean cruise. Aside from the fungal infection, which really is not displaying any symptoms, Jan is feeling pretty good. She continues to get stronger each day, but it's a very gradual progression.

We would like to thank everyone for their many thoughts, prayers, emails, and words of inspiration. We know we owe many of you a personal note or phone call, and we will do that when things calm down and life returns to a normal pace. It seems like we have spent 6-8 hours every day for the past many weeks at the Clinic, or in the hospital, dealing with a variety of issues (E-Coli infection, catheter infection, BK virus, dehydration and kidney function issues, compression fractures and surgery, and a host of diagnostic tests). As I have mentioned in the past, none of the of problems that I've just mentioned necessarily mean that the Bone Marrow Transplant has not been a success. On the contrary, all of the tests suggest that it is going well. We have spoken to many other patients and BMT recipients, and they all share similar stories. Nobody gets through this process unscathed. It's just a long, hard road; but we know we are a lot closer to our destination.

DAY - 92

It’s no wonder that the BMT doctors insist on patients living near Moffitt Clinic for several months post transplant. The hospital visits necessary during this process are almost daily, and often extend for eight or nine hours. As an example, our itinerary for this week and next looks something like this:

Monday June 02 – Labs, physical therapy evaluation
Tuesday June 03 – Bone marrow biopsy, labs, visit with doctor
Wednesday June 04 – Labs, 4-hour transfusion of fluids
Thursday June 05 – Labs, meet with Physician Assistants
Friday June 06 – Physical therapy
Monday June 09 – Appointment with Neuro to remove surgery staples, physical therapy
Tuesday June 10 – Labs, meeting with PA’s
Wednesday June 11 – Physical Therapy
Thursday June 12 – Surgery to remove triple catheter, and replacement of port
Friday June 13 – Physical therapy
Monday June 16 – Pulmonary Function Test, labs, meeting with doctor

Well, you get the idea. We spend a LOT of time at Moffitt Clinic. Today we went for labs only and the normal two hour visit turned into six hours when it was determined that Jan needed I.V. fluids. As we approach 100 days post transplant (on June 12th.) we expect this pace to slow down. Overall, Jan continues to get a little stronger each day. This is all very encouraging, especially since we had so many weeks where we saw almost no improvement, and at times regressed.

DAY-91

It's been a week since I last reported that Jan's back fractures were surgically repaired using a procedure called Balloon Kyphoplasty. Well, the procedure worked so well that Jan was on her feet by the following day and moving around fairly well. As a result, she was discharged from the hospital last Thursday, May 29th. She continues to have difficulty getting in and out of bed, or standing from a chair that is below a certain height. However, if she sits on a chair that is high enough, she can (with effort) stand on her own. This was very liberating for her. She often said she felt like a "paper weight" since, once she sat down, she knew that she was there to stay until someone could help her to her feet. So now we make sure she's in a chair that's fairly high, and has arms. She's walking fairly well with her walker. Her attention level has improved dramatically, and she is now very engaged in conversation. This was not always the case. Yesterday she went for a physical therapy evaluation. They confirmed the weakness in her legs and upper body and have scheduled appointments for this Friday, and for three days next week. We expect these physical therapy sessions, together with some exercises that she can perform here at the apartment, will improve her mobility and self-confidence. This morning she had her Day-90 bone marrow biopsy. I've lost track, but I think this was biopsy number 8. The results won't be available for another week. As you might expect, the next week of waiting will be a little nerve-wracking. Overall, I would say that this past week has been our best week in some time. We had no major setbacks, and things seem like they are back on track. We are still hopeful to be back home in Valrico soon after Day-100, sometime before the end of June.

DAY- 84

Today was our sixth day in the hospital as we waited for the the neurological team of doctors to return from their Memorial Day weekend. The past days have been uneventful, and Jan's pain has been managed with morphine. In preparation for Jan's surgery this afternoon her platelets needed to be increased from 23,000 to 100,000. One bag of platelets was given Monday evening which raised her platelet number to 70,000. A second bag of platelets was given this morning, which raised the count once again, this time to 99,000. This was close enough for the neurological team and she was taken to surgery at 2:00 P.M. The procedure was performed by a female neurosurgeon named Dr. Jain. In addition to Jan's procedure, Dr. Jain had five other surgeries on the docket for today, including two craniotomies. The procedure she performed on Jan is called a balloon kyphoplasty...............

http://www.spineuniverse.com/displayarticle.php/kyphoplasty-questions-2790.html

Jan was placed under general anesthesia around 2:15. The surgery lasted less than an hour and went fine. She was returned to her room via stretcher at 5:00 P.M. She has plastic bubbles wrapped around both legs which are connected to a pump. The pump automatically inflates and deflates the plastic cast and aids in the prevention of blood cots. They told Jan to expect pain related to the procedure for the next two days. They fully expect her to be up and around by tomorrow, moving slowly of course. We are hopeful that she will be discharged in the next day or two so that we can return to our temporary apartment home. We begin our third month in the apartment tomorrow. We hope that we will be able to return to our home in Valrico in the next few weeks. We have recently learned that our avocado tree of ten years, which has never born fruit, has hundreds of small avocados growing. Jan is anxious to eat a home-grown Valrico avocado. We have not received any further information on the E-Coli urinary infection, but we believe that it is being well managed with the correct antibiotic. If all goes well, we should be able to resume Jan's recovery schedule very soon. The next major hurdle will be to strengthen her legs which have been weakened by the steroids to the extent that she has not been able to get out of bed, or stand from a seated position, for the past five weeks. This, they tell us, is not unusual for patients on high dose Prednisone. It has now been seven months and thirteen days since Jan was diagnosed with AML.

DAY 81

I'm sorry for the lack of updates, but there really hasn't been much to report that was good, so I've just been procrastinating and waiting for a positive turn. Actually, there is some good news, the BK Virus is history, and along with it Jan's urinary distress is gone. However, this past Thursday Jan was having her vital signs checked, and was being moved from a laying position to a sitting position when she had a sudden stabbing pain in her back. She was once again admitted to the hospital and an MRI was run that evening. The results showed that she has two compression fractures of her lumbar spine, specifically L-2 and L-3. She is scheduled for surgery on Tuesday afternoon, so we remain in the hospital. She was on complete bed rest for the first two days, and was not allowed to move from her bed. She is being given morphine for pain. Last night they fitted her with a back brace, and today she was permitted to leave the bed to go to the bathroom. She must wear the brace, and we have to be ever so gentle moving her. This long and bumpy road seems more like a dark and crooked alley where evil awaits at every turn. I will explain more later about the surgical procedure, but I will say that's it's much improved over the invasive surgeries of years past. We still are hopeful for brighter days, but this is definitely another setback.

Miles for Moffitt - Mission Accomplished!

Hey Everybody - Jason here again. Yesterday was quite a day. The Miles for Moffitt event happened. A group of us participated in the 5k walk/run around the campus of USF where the route had us pass the Moffitt Cancer Center.

The event kicked off a little late due to the enormous turnout, so we started our journey around 8:00 AM. The adventurous of the group mixed the walk and run, working up a nice sweat on that humid Saturday morning. After downing an apple or two we all got together for a "photo finish" (shown here).

Many, many thanks to those family and friends that came out (from left to right in the picture): Kerry, Kelly, Christy, Alicia, me (Jason), Jeff, and Kim. Also, not shown is Jessica, thank you!

It was a great event to be a part of with our thoughts and prayers being with Mom the whole time. We love you, Mom!

Happy Mothers' Day to all the mamas out there!

T Plus 65

Twelve straight days of I.V. fluids concluded this past Monday when Jan received her second dose of the anti-viral medication. When we told the doctor that Jan was now drinking at least two liters a day, he said let's try going without daily I.V. fluids and see how it goes. Today (Thursday) we had more labs and her renal functions were within normal limits, and she was not dehydrated, so the extra fluid intake is working. There really hasn't been much to report these past days. The urinary tract issues still continue as we wait for the BK Virus to come under control. Possibly there has been some minor improvement in the urinary frequency and urgency, but we still have a ways to go. The other main issue right now is weakness and fatigue. Jan's legs are like rubber. Nearly all of her complaints (weakness, fatigue, fuzzy vision, puffy cheeks, high blood sugar) are all being attributed to the steroids (specifically the Prednizone). She is being tapered off this med, so we are hopeful that many of these complaints will soon subside. Some of her other complaints (tremors) are also medication (Tacrolimus) related, and this drug has also been lowered in dosage. All of her lab work continues to be excellent. Most of her difficult recovery right now is due to the medication, the viral infection, and the trauma of a bone marrow transplant. The viral infection is being treated, the meds are being reduced, and the rest just takes time. Our goal today is to get through Day-65. Tomorrow, we'll try to get through Day-66. We know that we are approaching Day-?? when things will be much, much better.

T Plus 56

When we left off on T Plus 51 I mentioned that Jan was receiving daily fluids (1000 cc's daily) to help lower her Creatinine level so that she could safely start a regiment of the anti-viral drug Cidofavir. Yesterday the doctors concluded that her kidneys were sufficiently functioning to allow the treatment to begin. As a result we spent nine hours at the clinic. First there was the weekly chest x-ray, then the never-ending labs, followed by pre-hydration (2 hours), then the Cidofavir, and concluding with post-hydration. This will be the Monday drill for the next three weeks of treatment. As I mentioned in my previous article, the Cidofavir is administered weekly for four consecutive weeks. We're told that this will, in time, relieve her problems with urinary incontinence, urgency, frequency, and bladder spasms. These problems have been upsetting to her, physically and emotionally, for the past two and a half weeks. We welcome any relief that the anti-viral medication will bring. The doctors have said that it may not be immediate, and could possibly take a week or two, but at least help is on the way.

Miles for Moffit

Hey Everybody, this is Jason (the youngest son of the strongest woman). I just wanted to let you all know that Moffitt is having an event to raise money for the fight against cancer. It's a Walk/Run on May 10th. Several family members, including myself and wife Kim have signed up and I invite you to do the same!

The main event is a 5K (3.1 miles) around the campus of USF, past the Moffitt cancer center. As an alternative they also have a 1 mile run/walk that you can participate in.

$25 for the 5K
$15 for the 1 mile

More information can be found here:
http://www.milesformoffitt.com/

Online registration:
http://www.active.com/page/Event_Details.htm?event_id=1513945&assetId=dab080f0-39a6-4733-8394-f9b4409550c6

This is a great way to support the place that is doing so much for our loved one. I hope to see you there.

T Plus 51

Today we made our routine trip to the clinic for an 'in and out' visit. By 'in and out' I mean at least two to three hours. It's nearly impossible to get out of there in any less time. Today was to include routine labs and a visit with the Physician Assistant (PA). Instead, we once again spent the entire day. Jan's BUN and Creatinine levels remain high, together with a high pulse rate, which are the diagnostic indicators for dehydration. So she was once again led to a private room and connected to an I.V. for hydration. Since she continues to suffer with the incontinence, the staff was considerate enough to put her in a room with private toilet facilities. The medication which they gave her to counteract the incontinence and bladder spasms have not worked. They continue to contribute these urinary tract problems to the BK Virus which she has developed. This virus probably lay dormant in her system for many years. With a healthy immune system, many viruses never develop into problems. However, Jan has no immune system right now, so the virus decided to awaken. The urinary problems will probably not diminish until the doctors can rid her system of the virus. There are only a couple of fairly new medications which are used in these cases. The drug they would like to use is Cidofavir. The problem is that this drug, as with many anti-viral meds, is very hard on the kidneys. As a result, they will not begin the treatment until her Creatinine levels are normal. This will be their indication that the kidneys are operating sufficiently well to endure the Cidofavir. In order to lower her Creatinine levels she must be hydrated, so we have scheduled visits for the next four days to the clinic for I.V. fluids. Once the Creatinine levels are to lowered to within normal limits, they will begin the anti-viral treatment. This will be the only sure remedy to Jan's urinary issues. In the meantime, her appetite is not great, but is sufficient to maintain her current weight. The strength in her legs continues to be very weak, and she still requires the assistance of a walker, or the strong hand of a family member. The anti-viral treatment will consist of four I.V. sessions, spaced one week apart, to administer the Cidofavir. During those four weeks it will still be important that Jan is properly hydrated, so there will probably be continued visits needed for I.V. fluids. Dealing with this illness is very much like Newton’s Third Law of Motion, which states that “For every action, there is an equal and opposite reaction". It just seems that every time we make forward progress, Jan gets blindsided with something that sets her back again. Surely there is a law of physics out there that says "enough already". We still believe that better days lie ahead.

T Plus 50

Well Jan’s hospital stay was fairly short, only two days. During that time they ran a whole series of diagnostic tests, including blood cultures, an MRI of her head, and a lumbar puncture to analyze her spinal fluid. Once again, all the tests were negative, and her symptoms were attributed to the intense chemotherapy, combined with the laundry list of medications that she is currently on. Here’s a short list of her medications: acyclovir, beclomethasone, budesonide, insulin, lorazepam, magnesium, mirtazimpine, pantoprazole, paroxetine, prednisone, sulfamethoxazole, tacrolimus, ursodile, voriconizole, oxybutynin, oxycodone………………well, you get the idea. All of these drugs have possible side effects, and how they all interact…….who knows. She was taking even more medication, but upon discharge it was decided to eliminate a few, and reduce others. After her discharge on April 15th she remained very weak and eventually needed assistance to get up from a seated position. One of the side effects of steroids is a weakening of the large muscles, like your thighs, which are needed to help you get up from a seated position. Ten days ago she also developed some incontinence, which has been very upsetting. A urine culture revealed that she does have a viral infection called BK Virus. The doctor has decided to treat the symptoms (which so far have not worked) and to wait on treating the virus until later this week or early next week. The reason is still not clear to us, but he indicated that starting therapy for the virus too soon could risk kidney problems. So, the long, long, bumpy road continues. We know there is a day in the future when things will look brighter. We know that each day will pass, and bring us closer to that unknown bright future day.

T Plus 40

In my last article I mentioned that we were finally out of the hospital after a one-month stay. Well, scratch that!! We are back in. Jan had done fairly well the first week after our discharge on March 27th. She was able to take short walks (several hundred yards) at a reasonable pace. She was coherent, and could carry on a sensible conversation. However, about a week ago I noticed that she had become unsteady on her feet and would need assistance to walk. Forget about several hundred yards. It had become a chore to go several dozen feet. In addition, her concentration level had diminished, and it became nearly impossible to carry on a normal conversation. She would become confused or forgetful. It became apparent to me that something was not right. So today I called the hospital and asked for an evaluation. They took her in immediately and did some neurological bedside tests. It was obvious that further investigation was needed, and it was decided to admit her with the intention of running a cerebral MRI and some kidney function tests. She was also very dehydrated, which may have contributed to her problems. We hope this will be a short stay and that we will soon return to our apartment.

T Plus 38

Well Jan has been out of the hospital for two weeks and a day. The first week we had to make daily trips to the clinic for blood tests, and weekly x-rays. That has now been reduced to twice-a-week labs, and continued weekly chest x-rays. During the past two weeks Jan has had chest pains associated with her hiatal hernia, and painful hiccups, as well as some continued soreness in her throat. Most of those symptoms have been lessened with medication. Her primary issues now seem to be continued lack of taste, and fatigue. It takes almost no effort to tire her out. Even the shortest of walks leave her breathless and ready to take a seat. At times she seems so sedated that simple conversations are a chore, and often times she will fall asleep sitting upright in her chair. Walking is difficult, as she needs constant support, even to go very short distances. I continue to wait for the day when I will see a little "pep in her step". The doctors continue to blame the sleepiness, drowsiness, fatigue, and lack of concentration on the many medications she is forced to take daily (about 15 different meds, some taken 3 times daily...........you do the math). Many of the meds have numerous possible side effects, and who knows what the interaction affects are.

Yesterday morning she had another bone marrow biopsy (number seven if memory serves). As usual, the results won't be know for at least a week. These are always nerve-wracking times, to say the least. The apartment continues to serve our needs, but we do look forward to the day when we can return home. It's hard to believe that it will be six months on Tuesday since she was first diagnosed with AML. It's been a long and hard six months........to be sure, but we are hopeful that the worst is behind us and that brighter days lay ahead.

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T Plus 29

Hooray........we're out of the hospital. Jan was given her discharge orders last Thursday. This picture was taken as she left the hospital after her one month stay. The biopsy reports have not yet returned to confirm GVHD (Graft Versus Host Disease), but the consensus is that she does have a mild case of it. This is expected in 30-70% of all bone marrow transplants. The doctors were quick to start Jan on steroids last week, which is the counter-measure for GVHD. All of Jan's blood work is excellent. Her white count is sky high, hemoglobin near normal, and Platelets are above 200k. The doctors all smile when discussing her hematology. Jan is still experiencing some painful hiccups, which aggravate her hiatal hernia. We have been given a new medication to try, so we're hoping she'll get some relief. She remains a bit depressed by the fact that foods have no taste. We sample all of her favorites, but so far only one or two items have any taste at all. As a result, her appetite is not great. This was also a temporary side effect of the chemo which she had back in Oct/Nov. It last a few weeks back then, but did eventually return to normal. Since discharge last Thursday evening, we have moved into our nearby apartment. It's actually very nice, and only minutes from the hospital. It's a two bedroom unit with twin beds in each bedroom. It has a washer/dryer and is completely furnished. It's really very comfortable. We were able to bring our DVR and wireless Internet from our home, and get it attached and working.

Jan is currently very fatigued. She can only walk for minutes at a time, and then needs to rest. This is expected, and we are told it will actually take months for her to resume normal activities. The steroids that she was given to counteract the GVHD have a side effect of causing "steroid induced diabetes", so we have to check her blood four times daily and administer insulin each time. This should only be temporary and disappear when the steroids are reduced, and then eventually discontinued. This past week we had to make daily visits to the Moffitt Clinic for blood tests, x-rays, and doctor's visits. On our visit last Friday it was mentioned that one of Jan's lung x-rays was suspicious. That, coupled with the fact that she had a slight cough and painful urination, let to more tests. They conducted a CT Scan, and culture swabs of the throat. Pending the results, she was placed in respiratory isolation, had to wear a mask at all times, and was not allowed to mingle with the other patients. Yesterday we learned that all those tests were negative, so she has returned to a "normal" patient status. She continues to take more than twenty medications daily, and the management of all those pills and capsules is somewhat daunting. The days ahead will consist of frequent clinic visits, frequent modification of her medication, and hopefully improvement in her strength and endurance.

T plus 22

Well another week has passed. Jan's mouth sores improved to the extent that she was removed from all her I.V.s on Monday. By improved I mean that yesterday she had several sips of water, three ounces of Boost, and one saltine cracker. Apparently that's the minimum requirements for discharge because we were told yesterday that we would be able to leave today and relocate to a nearby apartment for the next two months. However, yesterday Jan began to develop some diarrhea and nausea that became worse through the night. This potentially is an early warning sign of Graft Versus Host Disease (GVHD). As a result, any plans for discharge were dismissed, and instead Jan was scheduled for a double endoscopic procedure (one via the esophagus and one rectally) to obtain biopsies. Only a microscopic examination can confirm GVHD. It may take a few days for the results, but they don't waste any time starting precautionary treatment with steroids. The side effects of steroid therapy can be varied and unpleasant. Jan has already endured four weeks in the hospital and I dread the fact that we need to stay a little longer. Numerous tubes of blood have been drawn daily since Jan was admitted on February 27th and the numbers today continue to be excellent with a WBC of 5.66K, Platelets 255K, and hemoglobin at 10.4. Her numbers have actually been sufficiently high enough for discharge for about a week. Only the mucositis and now the diarrhea/nausea have prevented us from leaving. So, once again, we check off another day.........and wait to see what Day Plus 23 will have in store for us. By the way, today Jan was able to eat a container of yogurt......Yippee. I can't wait until she can once again enjoy my famous spaghetti with Cuban toast.

T plus 15

The past four days have not seen much change. Jan continues to have mouth and throat sores which also extend throughout the entire GI track. This morning while trying to administer some liquid medication she suddenly, without any warning, threw up a very unpleasant combination of mucous and blood. It was so sudden that there was no chance of capturing it before it landed on her pajamas and bed. The nurses took it all in stride..........just another day at the office for them. For Jan, it was a different story as she wondered 'what the heck is happening'. They explained that this was just a result of the mucositis. The accumulated mucous, dead skin cells, and blood just needed a quick exit from her stomach, and took the shortest route. We were able to change Jan's clothes from the waste down, but since she was wearing a pull-over top, we have to wait until 5:00 P.M. before the I.V.'s can be removed long enough for her to slip on a fresh top and clean up a little. The doctor confirmed that all is still progressing well, and despite the continued pain, things will improve soon. It appears that a discharge probably won't occur until the end of the weekend, or early next week, depending on how soon her body heals from the mucositis and she can eat, drink, and take meds by mouth. Her lab counts continue to improve, and actually are sufficiently high now to meet the minimum discharge requirements. Her WBC improved from 1.16 yesterday, to 1.85 today, while her hemoglobin remained at 9.5, and platelets rose from 45K to 67K. All excellent numbers for Day T plus 15.

T plus 11

Despite the fact that Jan's throat remains ulcerated, the doctors decided to administer the final dose of Methotrexate. As you may recall, this is the nasty drug that caused the mouth sores in the first place; however, it also the drug that best combats the possibility of GVHD (graft versus host disease). The decision whether or not to administer the final dose is always a last minute one after an examination of the mouth and throat. The doctors must then weigh the added aggravation of the mouth sores against that the drug will cause against the possibility of avoiding future complications. So, at 2:30 this afternoon, the final dose was given. Jan has been pretty much been asleep for the past 36 hours. She does get up to use the restroom, but once she returns to her bed, she's quickly asleep again. Her attention span is about ten seconds. She really is not aware of the time of day, day of week, or even where she's at sometimes. She remains on oxygen when she sleeps and has continuous I.V.'s running. As I look at her I.V. pole right now, she has five pumps attached, each which can handle from one to five lines of medication, fluids, nutrition, etc. For instance, there are currently ten bags hung and dripping. Having said all that, things are progressing normally. Her WBC actually increased to 60 to 210 today (with the normal being somewhere between 4,000 to 10,000. While the increase sounds insignificant, it's actually a good sign to see a reversal. Her WBC the previous five days went from 1030, to 400, to 150, to 140, and finally to 60 yesterday. Hopefully, this is an indication that her counts will start to slowly increase and that engraftment of Pack's stem cells will take place and start producing healthy blood cells. They have increased the minimum platelet count from 10,000 to 20,000. Since her count this morning was 12,000 she will be receiving platelets again this afternoon. Onward to T plus 12...........

T Plus 9

The past two days have not been good. While the abdominal pains which I reported on earlier have subsided, they have been replaced with severe sores on Jan’s throat. This is one of the side effects of Methotrexate. The nurses say her throat is “a mess”. As a result, Jan can not eat, drink, take pills, or even swallow saliva without pain and discomfort. Yesterday they hooked her up to a “pain pump” which administers the drug Dilaudid twenty-four hours a day, and has a push button which can be activated by Jan every ten minutes if additional relief is needed. However, they started out with a very low dosage of the medication and it had very little effect on Jan’s pain yesterday and last night. She could not sleep most of the night, and was awake every fifteen minutes or so pushing that pain button. Each button push results in a very loud beep, so I woke up about every other beep. The doctors monitor the amount of pain medication to administer by the number of times the patient pushes the button for extra relief. In Jan’s case it was obvious that she was up most of the night in discomfort. So, this morning they doubled the strength of the Dilaudid and gave her something for anxiety. Thankfully, right now she is sound asleep. They promise to give her whatever pain meds she needs to take the edge of her throat pain. It’s a bit of a balancing act since they want to control the pain, but not to the extent of making the patient incoherent and susceptible to other problems. The Methotrexate is given on Days +1, +3, +6, and +11. Since we are on Day +9, she has received three of the four doses and will be due the last one on Saturday. However, if her throat is ulcerated and bleeding, they will fore go the last dose. Jan's white count today is 600 (normal 4,000 to 10,000), her hemoglobin is 7.6, and her platelets are 9,000. Since her hemoglobin is below 8, she will require a blood today, and since her platelets are below 10,000, she will also require one or two bags of platelets. Speaking of bags………..as I look at her I.V. pole I currently count nine different bags of “stuff” running. These include fluids, antibiotics, various minerals, and pain meds. Since she is not eating, I suspect that either today or tomorrow they will start to feed her I.V. as well. Now to focus on the bright side. We have now been here two weeks and one day, and Jan has completed her chemotherapy, received her bone marrow transplant, has survived every inconvenience, and by this time next week we’ll be very close to being discharged and moving to our temporary housing.

T plus 5

Today (Sunday) is T plus 5. Jan continues to complain of severe abdominal pains which the doctors have concluded are related to her hiatal hernia and gastro reflex disorder, both of which are aggravated by the chemotherapy which she has received. All chemotherapy aggravates the lining of the mouth, throat, esophagus, stomach, and intestines. The pain is being managed fairly well with Oxycodone, and her nausea is being treated with I.V. Compasine. When the medication for the abdominal pains and nausea are working, Jan feels fairly good. In all, she is given more than twenty-five pills a day for a variety of reasons; most have them I have already discussed in earlier postings. In addition to the pills, she continues to be hooked up to her portable pump which administers the drug Tacrolimus twenty-four hours a day. She has received two doses of another drug called Methotrexate, which is also given to combat GVHD (Graft versus Host Disease). This drug can cause a lot of problems, but it can also be very beneficial. She will have two more doses administered this week. Our philosophy continues to be……..”one day at a time”.