Post #28
Where did the week go?

This has been an extremely long week for me. I have been working non stop since last Thursday to finish the hospital budget for fiscal year 2011. We thought we were done this week-end when we got the word to reduce expenses. Needless to say I am done and can now concentrate on Bill and his journey!! Please accept my apologies for the delay in updates a lot has happened.

I will start with Thursday's doctor appointment and bring you up to date. Today was Bill's last Neupogen shot. If you recall, the last time we went to the local doctor, we saw Katie because Dr. Castro was on vacation. We saw doctor Castro on Thursday everything was positive. The first positive news was Bill's weight. He is now 136.8, up 3 pounds from his weight at Moffitt.

The next piece of good news was his blood work.

11.10 WBC - normal is between 4.50 - 11.00
10.33 Neutrophils - normal is between 2.0 - 7.80

This is the best these two readings have been since Bill started this journey.

We brought the results from the Bone Marrow biopsy that we picked up when we were last in Moffitt as ask Dr. Castro to explain the results. We then reviewed the results of the Flow Cytometry with Dr. Castro and he was very pleased with the results, as Dr. Ayala was.

The next discussion was around the results of the second opinion on the bone marrow biopsy, the slides that were to be sent to Elaine Jaffe, at the National Institute of Health. We were unsuccessful in getting any information from Moffitt so Dr. Castro offered to find out on our behalf. It is important to me to get the results of the second opinion.

It is time to start thinking about the next bone marrow biopsy and ultra sound of the spleen. Bill is just about done with two months of treatment and although the flow cytometry looks good, the bone marrow biopsy is the definitive test to determine if Bill has reached the big R, remission.

Dr. Castro informed Bill that August 2nd is when he will start his third round of Cladribine, and hopefully his last. Dr. Castro wanted to confer with Dr. Epner (Hershey) to make sure the next steps are appropriate.

Friday was Bill's next injection of Campath.

Saturday afternoon Bill's son called and invited us to join their family at the mall. That seems to be the best place for Bill to get out and exercise during the Florida summer heat. We met them and had a very nice time. Bill's oldest grandson, Adrian who is 7, asked me if grandpa was sick. Bill wears a mask when he is in public to avoid the risk of infection. I explained to Adrian that "grandpa has a problem with his blood and he wears the mask to make sure he does not get sick. He is going to have a procedure done that will make him better"

Sunday was not a good day for Bill. He was feeling very fatigued and couldn't move. He was dragging and had no energy. It seemed odd he would feel this way after the excellent blood work he received on Thursday.

Monday was Bill's next injection of Campath. Before Sylvia, his nurse, would do the treatment she wanted to check his blood work. It was a good thing she did, things had changed dramatically from Thursday to Monday.

1.6 WBC - Normal is 4.5 - 11.0. On Thursday the WBC was 11.10
0.9 Neutrophil - Normal is 2.0 - 7.8. On Thursday the Neutrophil was 10.33

This explains the way Bill felt on Sunday. Since he has started his treatment he has been following a neutropenic diet to protect himself from infection. Not knowing what the Neutrophil count will be from day to day, you can't take a change. The results above prove that Bill is doing the right thing by following the neutropenic diet.

What is a neutropenic diet?

A neutropenic (nu-tro-PEE-nik) diet is for people with weakened immune systems. This diet helps protect them from bacteria and other harmful organisms found in some food and drinks. If your immune system is not working well, your body may have a hard time protecting itself from these bacteria.
•Avoid all fresh fruits and vegetables,
including all fresh garnishes. Cooked vegetables, canned fruits, and juices
are fine.
• Avoid raw or rare-cooked meat, fish, and eggs. Meat should be cooked to the “well- done” stage. All eggs should be thoroughly cooked (no runny yolks).
• Avoid salad bars, fruit bars, and deli counters. Buy vacuum-packed lunch meats rather than freshly sliced meats.
• Avoid raw nuts. You may eat baked
products with these ingredients.
• Make sure all of the dairy products you eat are pasteurized.
• Avoid yogurt and yogurt products with live and active cultures.
• Be safe in the way you handle foods. Wash your hands before handling food. Wash all surfaces, cutting boards and cutting utensils thoroughly. Keep hot food hot and cold food cold.
• At home, you may use tap water. If you choose to use bottled water, be sure it is labeled as follows:
° reverse osmosis or
° distillation or
° filtered through an absolute
1 micron or smaller filter

Sylvia called Dr. Castro and informed him of the blood results. Dr. Castro ordered 5 more injections of Neupogen, 300mg each, to start on Monday 7/26 and end on Friday 7/30. Monday and Tuesday were not good days, Bill spent most of those days on the couch. Today has been better, Bill has spent less time on the couch.

Bill would like to thank everyone for all the cards, e-mails and posted comments on the blog that he has been receiving. He looks foward to receiving them everyday.