Post # 63 - Bill is doing really well!!

The frequency of my posts have been less and less and that is because I don't have a lot to report.   There is not a lot of information out there on success after transplant when dealing with T-PLL.  We do know that several of the blogs that we followed as we started on this journey are no longer updated. Bill and I talked this morning and agreed that we would continue to keep this blog up to date as long as we are able to.  So our commitment to you is that we will blog several times a year to provide updates post transplant.

Since our last post several milestones have been reached.  

 

First, on March 29th Bill had his power port removed.  Similar to having the feeding tube removed, there was apprehension.  The power port was a life line that was there for him in his time of need.  As with all disease, especially cancer, you go on that emotional roller-coaster of am I really done or will I need the port again.  The procedure to remove the port was done in the doctors office and I was allowed to be in the room with him.  The doctor offered the port to us to keep, I opted to take the picture below. 

 

Second, during our visit to Moffitt on Wednesday May 30th Bill was taken off of the remaining medications that he was taking post transplant,  Bactrim and Acyclovir.  The doctor believes that his immune system is getting stronger and he is ready.  Bill also received his 18 month immunizations.  Since Bill is doing so well, our next visit was scheduled for August.   The August visit went well and the next visit was scheduled for November.  The November visit is Bill's two year anniversary post transplant.  He will have his last bone marrow biopsy.

By all accounts Bill looks great and one would never be able to tell that he was sick, he is getting stronger and is trying to do more and more.

The Sunday before Labor Day, we had Bill's sister Margy and her husband Gary, along with friends Mary Ann, Wendy and Scott over for a BBQ.  We had a really nice visit with every one, laughing a lot.  After our guests left Bill mentioned that he felt like he had a fever.  We pulled out the handy dandy thermometer and took his temperature to find out that he had around 100.6  Being Sunday and Monday a holiday we figured we would monitor his condition and call the Dr on Tuesday if necessary.  Through Tuesday morning  his temperature remained between 100 and 102.  We agreed we  should call the doctor but could not figure out which doctor to call.  Should we call Bill's  bone marrow doctor in Tampa, his local oncologist in town or his primary care doctor in town.  For the first time I felt the panic of a new parent with a sick infant and confused on who to call.  During treatment and post transplant we were taught that a fever of 100.6 meant a trip to the emergency room.  I called Moffitt first and left a message, then called the local oncologist and left a message.  Bill decided instead of waiting for a response he would go to the local urgent care.  He was given a flu test which came back negative so they put him on antibiotics and sent him home.  I got a call from Moffitt and they said to see the local oncologist and the local oncologist said to see our primary.     Since Bill had an appointment for his primary doctor on Thursday we figured we would give the antibiotics a chance to work and go to the appointment on Thursday.  From Tuesday to Thursday the fever did not subside and Bill was starting not to eat, was getting weak and developed a cough with no production.  

 

Thursday finally came around and the primary doctor examined Bill and took him off of the antibiotic that the urgent care put him on and gave him two new antibiotics with the instructions that he should go to the emergency room on Friday if the fever does not break.  The doctor also gave Bill a script for a chest x-ray and blood work which Bill had done on Thursday.  Friday afternoon we got the results of the blood work and chest x-ray and the x-ray showed interstitial pneumonia in both lungs and blood work showed elevated white blood cell counts.  By the afternoon the fever was still running around 101 so we decided Bill should get to the emergency room before the week-end began in case he needed testing.  Bill was admitted to the hospital from the emergency room and put on IV antibiotics.  At this point his fever was running between 101 and 104.  The nurse gave Bill Tylenol to bring down the fever and a cooling blanket to reduce his body temperature.  

On Saturday we were talking with the nurse and showed her a picture of Sookie and told her how much Bill missed her only to find out that the hospital had a pet policy.  We were both very surprised and excited that Bill would be able to see the dog.  What was most surprising is that I work at the hospital and I didn't know we had a policy.  One of my employees who has worked at the hospital for over 30 years didn't know either.  In order to bring in the dog several things needed to happen:  Dr. approval, a bath for the dog, papers showing all shots are up to date and approval by security.  That afternoon Sookie came to visit.  She immediately greeted Bill and then became his protector.  Anyone walking into the room was barked at and if they tried to get near Bill she guarded him.  I brought the dog every day.  It was funny to see a dog in the hospital bed with the patient.  My hospital is progressive and understands the healing powers of an animal, especially a personal pet.

On Sunday we asked to have the infectious disease doctor get involved as well as a pulmonoligist.   The infectious disease doctor tested the blood for every virus possible only to get negative results on all the tests.  

Getting back to the story, on Tuesday I called Moffitt to let them know what was going on as I wanted them to be in the loop, hoping that they might be able to provide guidance from a transplant perspective.   Within a few hours Dr. Ayala called me back personally.  He was very concerned and said Bill should have a broncoscopy.  He also said he would assist with getting him transferred to Moffitt if needed.  I finally felt like things were moving in the right direction to find a solution.  Wednesday Bill had a broncoscopy and a biopsy was done to see if they could figure out what was happening.   There was mention that if everything came back negative Bill might need an open lung biopsy, we are grateful that was never necessary.  Thursday the initial biopsy came back negative, the culture was going to take up to six weeks to grow.  I asked the pulmonoligst if what Bill is dealing with could be life threatening and he said yes.  

 

On Thursday it was decided that Bill should be moved to Moffitt and at 6:00pm he was taken by ambulance (as a precaution) and admitted there.  Friday morning I dropped Sookie and Tweedy off with Scott and Wendy and headed to Moffitt for an extended stay. 

 

I must recognize the blessing that Scott and Wendy have been throughout this entire journey.  Words cannot express our gratitude.

When I got to Moffitt I parked the car, went up to the unit and washed my hands before entering.  At that moment I had a flood of emotions where I was lost and not sure of what the next step was. Although everything was familiar I was confused.  I walked in to see Bill and said this all feels very strange.  Last time we were here we were mentally prepared to be here, this time I am not prepared. 

On Friday, Moffitt put in a pic line for blood draws and IV treatments.  I stayed in the room with Bill on the pull out couch like I did the first time around.   The doctor put Bill on an antibiotic called Meripenim, by Sunday morning the fever Bill had for two weeks finally broke.  Sunday evening Bill asked me to go home since there was nothing more that I could do.  Now that the fever broke they were going to observe him for a few more days and then send him home, so I went home.

The fever never came back so Tuesday they decided Bill would be discharged on Wednesday afternoon. At 3:00pm I left work and went to Tampa to pick Bill up and bring him home.

As of this posting Bill is getting stronger and feels good.