T-PLL Update

Tuesday Bill's sister Margy picked him up and brought him to the infusion center for his second dose of Cladribine. Since this was the first time at the infusion center with Cladribine, I dropped in to confirm that everything was ordered properly. The nurse from the hospital one Monday made sure the infusion center got a copy of the updated orders so everything was good to go. Margy was very impressed with the staff at the infusion center and the way they treated Bill. Margy said "I can leave today knowing that my brother is in good hands and is getting the best care possible. I have complete faith in the staff treating Bill".

In the picture below is: Margy, Mike and Bill

Wednesday I made arrangements to have the Healing in motion van pick Bill up and bring him to the infusion center for his third dose of Cladribine. The van is an employee funded program to help those without transportation get to and from the hospital and clinics for treatment. The van provided me a healing experience by allowing me to continue working and not have to go home and pick Bill up. When treatment was nearing the 2 hour mark, I went over to the infusion center to see the staff and then bring Bill home. My office is less than 5 minutes from the infusion center. Bill also received his 14th injection of Campath.

Thursday, the healing in motion van picked Bill up again and brought him to the infusion center. Bill e-mails me when the Cladribine IV drip starts and that provides me with a two hour warning so I can get there just as treatment is ending. My goal is to never have Bill wait for me after treatment. The treatments have been going well all week. Talking last night Bill said he feels pretty good. The Campath gives him more trouble than the Cladribine. The Campath injection takes 5 to 10 seconds, the Cladribine IV takes two hours. It is amazing how a small injection can make you feel bad. We are grateful that Bill is not getting the Campath via IV, that is brutal. The only problem that Bill has been having this last week is sores in his mouth. That is a side effect that we were warned about. Bill does have medication for this. He was prescribed 800mg of Acyclovir. The doctor instructed Bill to take one pill every day to prevent sores from starting. If the sores appeared, his was instructed to take one pill twice a day. Tuesday Sylvia called the doctor and asked him to prescribe Lidocaine/Nystatin (magic wash/swish and swallow). Bill is to use the magic wash every six hours as needed when he has sores. As of bedtime last night Bill was starting to have some relief, hopefully today the sores will be gone or the pain will no longer be there.

Below is a picture of Bill with his nurse Sylvia.




I must say that everyone has been great to me. My staff constantly offer to help in any way needed. Margy has done a day with Bill that I was not able to do. The healing in motion van has provided me a healing experience this week. I am truly honored. It is amazing how everyone comes together to help and be there in action, not just in words. As we move into the bone marrow transplant phase we are going to need lots of help.

Today Bill gets his final dose of Cladribine for this round. That makes 10 doses of Cladribine. He also gets his 15th dose of Campath. I will drop him off this morning and the healing in motion van will bring Bill home when treatment is completed.

Tonight we have a call with Shirley and Max to talk about Max's experience with his bone marrow transplant. Max just turned 10 months old (since transplant). We wish Max continued success with his journey.