Main Page • John's Journal (2000-2003) • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

May 1, 2006

 

“May the God of hope fill you with all joy and peace as you trust in him,

so that you may overflow with hope by the power of the Holy Spirit.”

Romans 15:13

 

The days at the UW Hospital have been long and difficult. However, having my family come spend the day with me on Sunday was simply the best. They are what I live for and they are what I fight for. To be with them lifts me up and restores my will to fight through this. When I reflect back on all the things I have, a house, a car, a good job, etc, I realize, in these situations, that none of that stuff matters in comparison to my family. The most important thing I have is my family. The blessings of my family overshadow all the negative things that happen in life, such as this recent medical setback. I just encourage everyone to remember what is really important to them. The best way to answer that is to consider where our time goes. Do we save only the left over time for the ones we care about, or do we make personal sacrifices to give them the first of our time. I know it is a challenge for me, but I pray God can always help me to put my family first.

 

 

The current update on my situation is still about the same. They continue to perform test after test on blood, stool, tissue biopsies, etc. Everything comes back negative. My doctor shared yesterday that the evidence does not point to GVHD. Consequently, he has ordered a reduction in my Prednisone. I am down to 40 mg a day. That is significant, considering a week ago they were giving me 140 mg a day. He will continue to taper the drug down further until we get to 20 mg every other day. Infectious disease specialists are not finding any bugs that are responsible for my GI problems, so they have decided I can go on Ammonium AD to slow down the bowels. Originally they didn't want to slow the bowels down just in case there was a toxic organism present in my GI tract that would accumulate if the bowels were slowed. As a result, of the Ammonium AD I went all night without a bowel movement. They are also going to modify my diet to a Lactose Free diet and put me on the old fashioned BRAT diet, which consists of bananas, rice, applesauce, and toast. I won't get much pleasure out of eating, but it should reduce my stool frequency and help the bowels to heal naturally. One concern we have is a rapid drop in my blood platelet counts. They are normally around 160 and are now at 26. Levels at 25 and below make bleeding a real problem, so I will probably need additional platelets infused today. They are going to do a bone marrow biopsy later this morning to examine my marrow and that may give us some answers on the platelets. My prayer is that the biopsy results don't show an increase in Leukemia Cells. That would be a major setback. Please be praying these biopsy results are good. For the bottom line here is that I am trying to get cured completely from the Leukemia. Doctors are still hoping to release me from the hospital on Wednesday. However, the doctors will probably implement a plan to maintain my fluids and nutrition through IV until my bowel functions return to normal. This may be a challenge, but it will sure beat being in the hospital. I am also praying faithfully that whatever this issue is, it resolves itself quickly. I have definitely been going through this long enough and my mind and body are ready for a reprieve.

 

 

As always, I continue to move. I exercise as much as my body will let me. Trying not to overdue it, but enough to keep from losing all my strength. It's tough to schedule in the exercise when I'm constantly hooked up to IV poles and/or have tests scheduled, but I just make it happen. It is such a huge healing tool for me. It helps me maintain my body, my mind, and my spirits. My doctor was even cool about not interrupting my stationary bike ride. He just talked and I just listened and spun. Neat sidebar on my main doctor, he is considered the number one GVHD specialist here at the Hutch. He only works with patients one month of the year. Otherwise he is in the lab. It just so happens the Lord had him available when I needed to be here. Clearly, God was in control of that one.

 

 

As always, this journey has been made so much easier by the incredible support of so many good friends. It would take me pages upon pages to thank everyone for everything they do. I do want to just say thank you to Amanda for coming up yesterday when I was to be here alone. You were a great support. Thank you also to Anne who stops by our home and does laundry for our family, among many other little things. Like I said, I could list so many people and all the things they have done. Just know we are so grateful to all of you and could never make it through this without you. Like I say in the quote below, “Friends are God's way of taking care of us.”

 

 

 

I'm going to close with what papa told me yesterday before he left. He said, remember what Jimmy V, the famous college basketball coach said:

 

“Never give up! Never, ever give up!"

Jimmy V.

 

(Don't worry papa…I will NEVER give up!)

 

 

 

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