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.