TREATMENT UPDATE

Ron had his first round of photopheresis on Monday and today. He seems to have tolerated it well. Basically ...the way photopheresis works ..a machine pulls Ron's blood out just as it did when he was on dialysis but at a much slower rate...the process separates out some of the white blood cells from the rest of the blood and exposes them to ultraviolet light after adding a drug called UVADEX...when exposed to UVA light..the drug becomes activated..which then destroys white blood cells. One theory of this process is that when the treated white cells are returned to the body ...the immune system senses a difference and the body works to eliminate these cells and others like them.
The first 4 weeks he has to have the treatment 2 times a week....thereafter it is then done 2 times a week every other week for 2 months....and finally 2 times a week once a month for 3 months....a much longer process than what we were initially told.
There are two facilities in Phoenix that provide this treatment...I am hoping we can get Ron set up with one of them.
He has to be very careful with sunlight 24 hours after each treatment..even indoors...the window blinds cannot be fully opened....and bright lights need to be kept at a minimum. ...because he will be exposed to a small amount of UVADEX when the white blood cells are returned to his body...this will make his skin much more sensitive to sunlight.
Once we begin outpatient therapy ...he will have to wear long sleeves ..special glasses that wrap around to provide UVA light protection. He also needs to use sun block to any exposed skin.

I am pushing to have Ron released on Thursday....well, I should say...I am telling everyone that I am taking him home on Thursday. All the treatment he is receiving up to this point are things he can do on an outpatient basis...so I just don't see the need to continue here in the hospital. Going home, I believe is going to be amazing therapy for him in and of itself.
So, I basically told every one to start getting things in order...coordinated and in place so that all is ready when we leave.

He gets another treatment of Retuxamab on Thursday...I will make sure that it is ordered early enough so that we are done at a reasonable time. It takes three hours for the infusion to complete.
I turned in the keys to the apartment on Monday and my car is loaded down. Tomorrow I will begin to start packing more things that we have accumulated in the past four months here in Ron's room...so that I don't have too much to do on Thursday.
I met with the social worker today and went over things we need to have in place once we get home....home health care, physical therapy, a facility for him to receive his chemo infusion via IV...and a facility to receive his photopheresis...etc....

They have made some new changes to his pain medications...hopefully, it will work out for him.
He has a lot of pain during the wound care dressing changes and his chronic back pain...(which I do not want to become an issue now that we finally have him walking...I don't want this to slow down his progress. He was not too happy to hear of the changes...but we will give it a chance and hope for the best.

Tomorrow will be a quite day considering everything he had the past two days. It will give me a chance to pack things up.

He also had an echo on Monday ....we were told that all looked very good. His ejection fraction is staying in the 55-60% range...and his d cell function showed some slight improvement.

I have yet to speak with any of the CT surgeons as to my decision to take him home. I have only spoken to their PA and to their nurse practitioner...my guess is I will eventually see one of them before we leave.
I did speak with the kidney surgeon and he did not seem to have a problem with it. He said to continue with what I am doing with the wound care...he felt the wound looked very good and the tissue is very healthy and clean.

We are so ready to hit the road and be Phoenix/Goodyear Bound......Praise God!!!!!


How amazing are the deeds of the Lord! All who delight in him should ponder them. Everything he does reveals his glory and majesty. His righteousness never fails. He causes us to remember his wonderful works. How gracious and merciful is our Lord! Psalm 111:2-4