Post #50 - Day 53 - Saturday, January 1, 2011 - Happy Birthday Michael Cosentino

The mornings are tough for Bill due to the lack of sleep during the night. The number of times he gets up is about the same. The urine continues to show small signs of improvement. We got to the infusion center at 10:30am for our daily liter of saline. We had Robert for our nurse this morning. Robert is one of our favorite at the BMT. He is soft spoken, gentle, compassionate and friendly. Since Bill has been Robert's patient before, Robert anticipates Bill's needs and brings the items that he knows Bill will request. Kudos to Robert!!!

The pain in the abdomen that Bill had the last few days seems to be gas. Now that he is eating a little his bowels are getting a work out. We will continue to monitor the pains for any changes.

This morning, Sunday, Bill mentioned that the sores in his mouth are not improving with the increased dose of Famvir. It seems they are coming back instead of getting better. If this continues he will not be able to eat again. We will discuss this with the nurse at the clinic this morning.

I try my hardest to make each post meaningful, informative and clear. Sometimes what I write is clear to me, but conveys a different message to the reader. My last post discussed the results of the bone marrow biopsy, that the test could not detect the disease. (I have edited the post to be less confusing). Although this is positive news, it does not mean the journey is over. The word "CURED" has not been used yet. We still have a very long road ahead of us. Bill has a minimum of another 46 days that he needs to remain in Tampa. The reason this is required is his immune system is young and immature the therefore his body is susceptible to various infections; viral, fungal, Bacterial. Bill has already had two viral infections and a touch of GVHD in his stomach. As you have read with the last fever, the BMT take them very serious. A fever that goes undetected, and untreated could be fatal. We take Bill's temperature at home several times a day. Once Bill is discharged from living in Tampa (day 100 we hope) he will still be under heavy precautions. He will need to avoid public settings, crowds, continue the food restrictions and stay away from anyone that has a cold or was near someone that had a cold. He will need to avoid anyone that has had a live vaccine for 6 weeks. We will require anyone that enters our home to use hand sanitizer and remove their shoes. He will continue to see the doctor in Titusville weekly and visit Moffitt on a regular basis. The one year mark is the first real milestone that we can truly celebrate and we will. The bone marrow biopsy done then will be a better indication of the future.

There are a few links to blogs by others, Under other TPLL blogs, that have had Bill's disease and are still on their journey. Max (TPLL support net) is in approximately month 15 post transplant and is doing great. His doctor just released him to travel from Buffalo to Florida, congrats to Max; and to Shirley for being a great caregiver. I can speak first hand and say that she had her work cut out for her and she did a great job. Mark (Curing Vancura) is in the second part of his first year post transplant. A month ago he spent a month in the hospital with pneumonia. The doctors have asked his sister to harvest more stem cells for a possible second transplant. We wish Mark well in this new year and nothing more than health and progress towards a non hospital/clinic existence. Please feel free to click on those links and read their blogs.

We are on the road to recovery, but as our doctor has said many times, "you will hit many bumps in the road and we will deal with each one as we hit them". We continue to stay positive and do what we are told to ensure that Bill continues on this positive journey.

Thanks for reading and please do provide feedback if something is not clear.