[Nfbf-l] latest update for Jim

Thu Jan 16 05:19:16 UTC 2014

Hello all,

You will notice from the beginning of the upcoming message that I just read 
it--partly because I have been very busy and partly because something inside 
me made me stall reading it. However, I continue to be positive for Jim and 
for Kim and the rest of their family. They say wwhen God closes a window, he 
opens another door. May God give all of you strength to deal with this new 
way of coping with Jim's disease. Bone marrow transplants are extremely 
risky, as you know, and this medicine I'm sure will solve the problems. Have 
faith! Please keep the Ellsworth family in your prayers for good and 
positive things to happen for Jim. I know I will! (The message is below the 
link.

Sherri
http://m.caringbridge.org/visit/jime/journal/entry/id/113549951/page/1/num/1
Written 22 hours ago

Hello everyone, All evening, I have been pondering on how I am to write this 
next update. For that matter, even whether I'd write this update tonight or 
write it at a later date. At first, I opted for writing it later; however, I'm 
not yet sleepy and I want to go ahead and let everyone know as soon as 
possible. All my life, I have been a fan of various medical television 
dramas. I can become rather engrossed in the story lines. Some have been 
quite memorable even to where I still recall them to this day. The real 
serious ones have most definitely brought tears to my eyes and have made my 
heart full to bursting. However, none of those episodes and shows can 
compare to what happens in real life. Even your emotions are not what you 
might think they would be when you try and imagine it. In fact, when you 
experience what our family went through today, those medical dramas, though 
touching as they sometimes are, simply cannot convey the myriad of thoughts 
and emotions that everyone is experiencing in the moment in real life. It 
has been a long day for some of the family. Jim and daughter Jennifer were 
up very early this morning to attend appointments at Moffitt. In the 
afternoon, Jamie, Will (her husband) and I joined them at moffitt at the 
bone marrow transplant clinic. We were there to meet with the primary 
transplant doctor, the pharmacist and the social worker. We had a 
ridiculously long wait. We were anxious to learn the overall results of the 
test and to sign the consent forms. Finally, the doctor and one of his 
associate arrive. Once everyone in the room exchange pleasantries, the 
doctor presented us with the facts along with his opinions and 
recommendations. There are four conditions that must be met in order to go 
through with a transplant. They must all be met; they cannot accept a 3 out 
of 4; especially with regards to Jim and others who have similar issues. 1. 
A donor match must be obtained. Of course, that condition was met. In fact, 
we learned that the donor is a 27-year-old male who tested clean for such 
communicable diseases as HIV and hepatitis. 2. What the status of the cancer 
is. This condition was met as the PET and CAT scan scan revealed that Jim 
exhibited a partial response to the last chemotherapy treatment. He is not 
in remission; however, the response is good enough that the transplant could 
still take place. 3. Blood testing and cardiac. These tests revealed that 
his ticker is in good condition. The blood tests showed a couple of surprise 
viruses; one of which is endemic to areas such as the Caribbean, Southeast 
Asia and South America. Jim has never traveled to any of these places. 
Doctor said it is possible that it may have been from a transfusion; but, he 
wasn't certain. Also, they were waiting on the results of a second test run 
to make sure the first wasn't a false positive. The other virus is one that 
most likely is a result of a short illness that he had many, many years ago. 
Neither virus is active. However, it would bear watching as the induction 
therapy for the transplant could cause them to become active. 4. The 
pulmonary test. This, the doctor saved for last. As I mentioned in my 
previous post, last week's test numbers were low. They were hoping that 
perhaps it was just an off day for Jim; so, he was tested again this week. 
This time, one set of numbers was even lower than last weeks while the other 
numbers went up by only a few points. Without getting into the technical 
details, essentially he was tested on the exchange of oxygen and carbon 
dioxide. He was also tested on lung volume. Ultimately, the range for one 
area needed to be between 80 to 100 percent. Jim was in the low 40s both 
times. The other set of numbers were way too low from what is required. The 
lung damage is not from the cancer. It is most likely due to several factors 
such as the pleural effusion and chemotherapy. He also use to smoke 
cigarettes; however, gave up that habit (cold turkey) about 20 or more years 
ago. The doctor told us that due to the lung damage, the risk is too great 
to do the transplant. He even went over the results with another transplant 
doctor who is a colleague. That doctor shared the same opinion. A doctor's 
motto is to do no harm. If he was to go ahead and have Jim go through with 
the transplant; which, would be the best possibility for a cure, there is 
also a great risk that Jim's lung would be compromised to the point that he 
would wind up on oxygen or a respirator for the rest of his life. He could 
also die in a year from the transplant due to lung infection. Thus, they 
would be doing the transplant knowing that there is a very high risk that 
harm would be done to the patient. In conclusion, he is recommending to Jim's 
oncologist, Dr. Sotomayor, that Jim be put on Ibrutinib which was recently 
approved by the FDA at the end of last year. Though there is no long-term 
data available; and though the study was small containing two years of data, 
it shows great promise; he mentioned 70% response rate. He told us to not 
give up hope and that this is not the end of the world. There are a couple 
of other medications that are currently in clinical trial and that in the 
next couple of years, they may be approved. With heavy hearts and various 
emotions we thanked and said our goodbyes to the staff in the BMT clinic. 
Subsequent transplant-related appointments were then canceled. As one can 
well imagine, this news weighs heavy upon us all causing some to shed tears, 
some quietly attempting to process all that was just said and others trying 
to stay positive and hopeful. I would like to say for the record, that our 
family is fighters and I for one intend to see this thing through. I will 
not allow myself to crumble in the face of this latest event because Jim is 
not through. Where there is life, there is hope. I will continue to be the 
cheering squad for us all and I will continue to be a prayer warrior. I know 
all of our friends and loved ones will continue to fight alongside us. Much 
gratitude from us goes out to all of you for this. So, when we heard the 
news, there was no melodramatic music in the background, no noisy outpouring 
of cries, no sudden heroic ideas to save the day, no comic relief to end the 
show. Just a doctor, his staff and our family confronting a real life 
situation and ending on a solemn note. Everyone did what needed to be done. 
Everyone will continue to do what needs to be done. We will move on to the 
next leg of this journey of life and continue to face whatever challenges 
come our way. This is how we operate. Off to bed now. It has taken me some 
time to compose this update; and as hard as it was to do, I am relieved to 
have it over with. Good night all and may everyone have a blessed week. Kim
Sent from CaringBridge iPhone App

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Sherri

Character is the side of yourself you choose to show the world.
Integrity is what you do, what you say and how you act when you think no one 
is paying attention.
Sherri Brun
NFBF Newsline Chair
flmom2006 at gmail.com
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