Post #52 - Day 72 through Day 78

Day 72 - Thursday, January 20, 2011
WBC 4.05 / ANC 2.99 / Creatinine 0.9 / BUN 23 / Hemoglobin 10.1 / Platelets 137 / Magnesium 2.1

First thing in the morning, as soon as the ng tube feeding is complete, I flush the line with 30cc's of saline. Today Margy took Bill to the BMT clinic for his morning dose of Foscarnet. I went to Orlando to attend a Healthcare Financial Management Association (HFMA) two day seminar. Bill is continuing to eat food even though his throat is hurting. I returned back to Tampa to administer Bill's evening dose of Foscarnet and tub feeding.

Day 73 - Friday, January 21, 2011
WBC 3.24 / ANC 2.69 / Creatinine 0.9 / BUN 24 / Hemoglobin 9.7 / Platelets 133 / Magnesium 2.2

The routine today is pretty much the same as it was yesterday. When I returned from the seminar Margy left to return home to her husband Gary, in Deltona, FL. Home administration of Foscarnet and ng feeding is going well.

Day 74 - Saturday, January 22, 2011
WBC 4.0 / ANC 3.28 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 137 / Magnesium 2.1

We have fallen into a routine now. Approximately 7:30am the ng feeding ends with loud beeps from the pump. I remove the tube and flush the line. Next we tackle breakfast. Bill has been eating cereal in the morning. Then we are off to the BMT clinic for our morning dose of foscarnet at 9:00am. We are usually done between 12:30pm and 1:00pm. Off to the store to pick up some food supplies and then back to the apartment for lunch. Around 6:00pm I take the foscarnet and pre and post saline out of the fridge so it can reach room temperature. I then prepare dinner. Believe it or not, Kraft macaroni and cheese is still the food of choice. At 8:00pm I start the pre hydration with saline for one hour. At 9:00pm the foscarnet is started and runs for one hour. At 9:30pm I prepare the bag of food to start the ng feeding. Four cans of Jevity 1.2 cal is put in the bag that is then attached to the EnteralLite Infinity pump. The pump runs at 100ml per hour. At 10:00pm the post hydration with saline is started and runs for one hour. At 11:00pm we are done with the infusion, I flush the line with Saline and heparin. By 11:30pm we are in bed.

Monday is mail day. On her way to work, Barbara Diesel, stops at the Great Outdoors to pick up our mail from Bill and Mae (Bill and Mae empty our mail box each day). Barbara hands the mail off to David Gunsteens who on his way home delivers the mail to where ever we are in Tampa. If we were in the hospital, David came to the hospital. If we are in the apartment he comes to the apartment. Bill and Mae, Barbara and David don't think anything of it and are happy to help. To me and Bill they are providing an unbelievable service. I cannot put into words the gratitude we have for them. They never missed a week. Thank you.

Day 75 - Sunday, January 23, 2011
WBC 3.76 / ANC 2.79 / Creatinine 0.9 / BUN 24 / Hemoglobin 10.0 / Platelets 135 / Magnesium 2.0

Same as Saturday with one difference. The bladder spasms are getting worse. The PA prescribed Phenazopyridine - Pyridium. Phenazopyridine relieves urinary tract pain, burning, irritation, and discomfort, as well as urgent and frequent urination caused by urinary tract infections, surgery, injury, or examination procedures. However, phenazopyridine is not an antibiotic; it does not cure infections. This drug causes the urine to turn orange.

Day 76 - Monday, January 24, 2011
WBC 4.28 / ANC 3.38 / Creatinine 0.9 / BUN 22 / Hemoglobin 10.3 / Platelets 152 / Magnesium 2.1

Same as Saturday with one difference. The pain in the throat is starting to get worse instead of better. The mouth and lips are completely healed. We decide to give the throat more time and wait until our appointment on Wednesday. The ups and downs can be very discouraging.

Day 77 - Tuesday, January 25, 2011
WBC 4.31 / ANC 3.29 / Creatinine 0.9 / BUN 26 / Hemoglobin 9.7 / Platelets 158 / Magnesium 2.1

Same as yesterday. Administered the last dose of foscarnet that we had in the house.

Day 78 - Wednesday, January 26, 2011

Today was different. We did not need to be at the clinic for our morning dose of foscarnet. Today is our appointment with Dr. Ayala. Things to discuss are: changes in foscarnet, bladder spasms, throat pain, ng feeding, weight and the all important day 100!!!

First blood work was done. We then met with the nutritionist to discuss how Bill is doing with food and what we can do to get more calories into his body. We then met with the Dr.

• Blood work is slowing coming back.
• Weight, at 124 lbs is up from the low of 113 lbs but still short of the 137 lbs pre transplant.
• Ng feeding will continue for another three to four weeks. Since discharge last week, Bill is eating and getting ng feeding but is not gaining any additional weight. There is concern that stopping the ng feeding will have an negative impact on his progress and health.
• Foscarnet will continue for another two weeks, at one dose a day. The dose will be increased from 1,272 mg IV to 2,520mg IV. The dose for today was done in the BMT infusion center. Tomorrow morning Walgreen's infusion will deliver the next weeks worth of treatment.
• The next bone marrow biopsy will be around day 90 along with some vital organ testing to see how Bill compares to his baseline obtained prior to transplant.
• The doctor is putting in an order to have the triple lumen catheter removed by the end of next week. He is starting the process of getting Bill ready to move back home home to Titusville.
• If everything continues to go as it is today, Bill will be on track to go home home by day 100. He is still dealing with the virus' and has a long road to recovery from what they are doing to his body. When we go home home we will back to Tampa for a weekly appointment with the Dr. Bill will also continue to stay on the ng feeding in Titusville. Since Bill's case turned out to be more complicated than what they normally see, he will need to follow up weekly to ensure there are no new complications and the current virus' are behaving and getting better.
• mycophenolate mofetil - Cellcept is being discontinued as of tonight. This drug is used to prevent GVHD. It prevents GVHD by suppressing the immune system. This suppression could possibly delay the body from getting strong enough to heal the virus'. Stopping Cellcept around day 78 is normal since Bill has not had any signs of GVHD, other than the touch he had in his stomach.
• Starting today, we are now on a three day a week schedule to have blood work done. Since foscarnet will be administered at home once a day, we will only go to the BMT clinic on Sundays, Wednesdays and Fridays. On Wednesday we will meet with the doctor.

Tonight only had to hook up the ng feeding, slow night.

Tomorrow, Day 79, will be the second day since November 2 that we will not visit BMT clinic / Moffitt Cancer Center. If you do the math that is 87 days we have been here, 85 of which have been in some nature at Moffitt. Tomorrow will be like going on vacation.