Tuesday, September 22, 2009

Good news first: the biopsy report is in. Dad has Diffuse Large B Cell Lymphoma, the most common form of central nervous system lymphoma. This is a very fast growing lymphoma, and the cells are dividing at a rate of greater than 70%. This is why Dad is going downhill so very fast. We would not have had this biopsy report yet, but Gregory told us tonight that the Vanderbilt neuropathologist came in and worked through the weekend to get the report ready. He knew how important it was. Our hope was that maybe we could get Dad to the neurological oncologist today, so Kevin and I went to Louisville this morning and stayed all day. Dad's health has decreased dramatically since Sunday. He had very little to say, he looked straight ahead in a daze for most of the time we were there, he is very confused and he is starting to get emotional. One side of his mouth is now drooping. The nurses are coming in every two hours to check his strength in his hands. I went with him to his occupational therapy, and one of the tests used a giant panel on the wall covered in red lights. One light would come on, and Dad would have to touch the light to turn it off. Then another light in another area would come on, etc. The purpose was to see how many lights Dad could touch in a specific time period. When Dad first entered Frazier, he could turn off 21 lights. On the first test today, he turned off 7 lights. They did the test four times. His results were 7, 15, 11 and 15. He also did five different exercises with arm weights. Immediately after the therapist worked through the exercises with him, she asked him to show her the exercises he had just done with his arms. He was supposed to do every exercise he could remember. He started exercising his foot. She told him that she only wanted the arm exercises he had done, and he couldn't remember any of them. Mom says that he is just lifeless tonight. The stress is starting to break Mom down now. She said that she had seen him go down so much today. It is unfathomable how we could be to this juncture in three weeks. Gregory talked to the neurological oncologist tonight, and the nurse will be calling them in the morning to make an appointment for either Thursday or Friday. The oncologist says there is a clinical trial going on at Vanderbilt that is cutting edge technology. It is the best treatment available for this type of lymphoma. Dad just has to qualify for the study. He has to meet with both the neurological oncologist and the doctor running the clinical trial at the same time. If he meets the specifications to participate in this trial, he will be given high dose chemotherapy and a monoclonal antibody called Rituximab. If I am reading the clinicaltrials.gov site correctly, his treatment would be for 14 weeks. This trial is not conducted in the state of Kentucky. His entire treatment would take place at Vanderbilt. Monoclonal antibodies can block cancer growth in different ways. Some find cancer cells and kill them or carry cancer-killing substances to them. Others interfere with the ability of cancer cells to grow and spread. Drugs used in chemotherapy work in different ways to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. By giving rituximab and chemotherapy together, they hope it will kill more cancer cells. All this information can be found on this website: clinicaltrials.gov - Trial # ECOG-E1F05 . This trial has been very successful in shrinking tumors, and in some cases the tumors have actually disappeared. The oncologist says this will be the best trial Dad could be in, but he will have to qualify. Thursday or Friday can't get here soon enough. The doctors know what shape Dad is in, but both doctors have to see him together, and that isn't possible tomorrow. With each day, the clock is ticking. I know we are not running on our time, we're running on God's time. I know that God knows what He's doing, and that He will be glorified. God did not guide the Israelites, who were being chased by the Egyptians, to the Red Sea and then leave them to fend for themselves. The Israelites had absolutely no hope of saving themselves. When their situation was hopeless, God stepped in and showed them that he was the Supreme Lord, capable of ALL things. He parted the Red Sea. No matter how hopeless the situation, my God tells me that He is in control. He knows exactly where Dad is, He knows how bad the situation is, and, yes, thank goodness, He is the same God who parted the Red Sea. To God be the glory, great things He hath done. I WAITED PATIENTLY FOR THE LORD; HE TURNED TO ME AND HEARD MY CRY. HE LIFTED ME OUT OF THE SLIMY PIT, OUT OF THE MUD AND MIRE; HE SET MY FEET ON A ROCK AND GAVE ME A FIRM PLACE TO STAND. Psalm 40: 1-2
Right now, we are definitely in the mud and mire. Please pray that Dad's condition doesn't worsen before the appointment, and that if it is God's will, he will be able to have this particular treatment. Please pray for Mom's strength. She has been very strong through this ordeal, but tonight she broke down on the phone. It's almost more than she can bear. Thank you for all your prayers. I can't imagine where Dad or the rest of our family would be without them.
Love always,
Renee

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