Post #64 - Happy 2 year Birthday Bill!!!
It is hard to believe it was two years ago today that Bill received his bone marrow transplant. It is wonderful that Bill is doing well. Two years is a major milestone, wishing you many more healthy years!!!
Love Mike
T-cell-prolymphocytic leukemia (T-PLL) is a mature T-cell leukemia with aggressive behavior and predilection for blood, bone marrow, lymph nodes, liver, spleen, and skin involvement. T-PLL is a very rare leukemia. Other names include T-cell chronic lymphocytic leukemia, and T-prolymphocytic leukemia/T-cell lymphocytic leukemia. The purpose of this journal is to leave a path for those that are diagnosed with this disease, as others have done for me.
Friday, November 9, 2012
Monday, November 5, 2012
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blogs that we followed as we started on this journey are no longer updated.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.
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.
Sunday, March 11, 2012
Post #62
It has been a couple of months since my last update. A lot has transpired so I will do my best to put it all in print.
It has been a couple of months since my last update. A lot has transpired so I will do my best to put it all in print.
The one year bone marrow biopsy results came back
good. The CD 33 is 100% donor, CD 3 is
97% donor and the bone marrow is 95% donor.
The only item that is still in the low range is the lymphocytes and
specifically the CD4 T cell helper/inducer cells. The current level is 0.034 and bottom end of
the normal range is 2.0. The Campath does
a number on the lymphocytes and it could be a bit longer before they come back
to the normal range. In the mean while
Bill will continue to stay on Bactrim and Acyclovir.
The thyroid issue has been brought under control with
medication. It took about two and a half
months for the medicine to do its job and to get the correct dosing. At the time it seemed like an eternity for
the pills to take effect.
Bill and I took our first vacation in almost two years
during the December holidays. We went
camping in the keys from December 23rd until January 2nd. We camped out at the KOA at mile marker 20
in sugarloaf key. The campground sites
were a little tight but we managed to have a really great time. Bill's son William (Billy) and his wife
Johanna and their boys Adrian and Alex joined us for a few days. We really enjoyed the beautiful blue water
and the wonderful views. While they were
with us we rented a boat for half a day and had a wonderful time, Bill's
grandson Adrian did most of the
driving. Sookie (our dog) came for the
boat ride as well. Bill and I had dinner at a wonderful restaurant called Manga
Manga in Key West and would highly recommend it to anyone traveling to the
Keys.
I did a 40 mile bicycle ride from mile marker 20 to zero
and back to 20. On the way back, 30
miles into the ride I had an accident with a women who was talking on her cell
phone and did not see me. Fortunately I
was able to avoid her hitting me or me hitting her car. Unfortunately I went down and broke the fall
with my hands and fractured the radial head in my left elbow.
After three weeks in a cast and three and half weeks of
physical therapy I am doing much better.
My first trip to the gym since the fall was last week.
After our vacation Bill was feeling great and started to
do things around the house. He is
cooking again and I am in heaven. He is
the best cook in the world and I love what ever he makes. The last two weeks
have been slow for him. His strength has
diminished a little and he has some fatigue.
His blood work showed lower platelets and lower hemoglobin which would
explain the fatigue. Two weeks ago Bill
went and redid his blood work and the levels came up so hopefully he will start
to have his strenght back. The Platelets
were 36.70 and the last test came back at 71.90. Normal range is 161.00 and transfusion is
required at 10.00.
Today was Bill's appointment at Moffitt. First blood work and then an appointment with
the doctor. The doctor examined Bill and
reviewed his blood work and then said "Bill is my miracle
patient". His nurse Denise said that
her file on bill is bigger than any file she has on a patient that is five
years plus post transplant. He has been
through the mill. The next appointment
will be in May when Bill gets his 18 month immunization. The appointment after that will be three
months later (November) when he will get his two year immunizations and have
his next and most likely last bone marrow biopsy!!
Since November, Bill has had an appointment at Moffitt
every other month and on the off month visits with the local oncologist. The main reason he has the visit with the
local oncologist is to get his power port flushed. The port needs to be flushed every 30
days. We are at a point where Bill can
have the port removed as he really hasn't used it in a while. At today's appointment the doctor indicated
that he should have it removed when he is ready.
That is it for now.
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