UPDATW November 18, 2007

UPDATE
November 18, 2007

Since I last updated the blog, Jack has continued to decline. He had become lethargic and lacked his usual robust appetite as of Tuesday and Wednesday. He also seemed somewhat more unbalanced when he walked. Stairs were becoming more and more difficult. On Wednesday as he was coming down the stairs with my assistance, he almost toppled over onto me. He also seemed to be more exhausted by each step. After giving him some orange juice, I had him come down the stairs on his bottom, one stair at a time. I became more concerned as I observed that he did not complete his breakfast. I stayed at home as long as possible until he decided he needed a rest. I left home to go to an appointment at work knowing that our daughter-in-law, Megan, and our homecare person would be coming in shortly.

When Megan arrived around noon, she found Jack on the floor struggling to get up. He told her that he wasn’t sure how he landed on the floor but that his body was shaking strongly. He said he thought this was the long awaited seizure. Megan called me and I had her call his doctor. His doctor decided that he needed to be admitted to Lahey Clinic, his new source of care. I must add that the entire Lahey Clinic experience has been amazing. The nurse advised that they wanted us to call an ambulance as soon as they had identified a room for him. They did not want him stranded in the emergency room. She called back in about 10 minutes with directions for the admittance process coupled with a room number. He was admitted around 1 PM on Wednesday.
After doing a CT scan on Jack, the doctor determined that he had significant brain swelling. They dramatically increased his steroids to reduce the swelling. Within a few hours, he was eating well again and seemed much more alert than he had for several days.
The MRI, to establish the first benchmark since his radiation ended, was still scheduled for Friday, as planned. I am copying the email onto this update that I sent to family and friends after that report.

Dear Family and beloved Friends:
Yesterday morning when I was meditating on the Psalms, I came across this verse from Psalm 112:7-8 which states:
"He will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear; in the end he will look in triumph on his foes."
I took these verses to Jack at noon. I told him that these were verses to prepare us for the day. He was much more alert than he had been on Wednesday. We had some good together time in the afternoon. We both had naps! You know you are getting old when you would rather sleep than talk!
He had his MRI Friday AM. The news is not good. The reason for the major decline that I observed this week was due to severe brain swelling which they observed on the CT scan given on Wednesday evening. It appears that the tumor did not respond to the radiation and chemotherapy now coupled with tissue death and severe swelling from the treatment. The initial fear was that the tumor was inoperable since it could lead to permanent paralysis. Since Jack is now paralyzed on his left side (even his walking is almost impossible now), the Dr. suggested that surgery might be a consideration to debulk the tumor and dead tissue with the hope of restoring his walking. If surgery is done, we also have another option. Jack has a MIT colleague, Bob Langer, who is world renown for his drug delivery systems. One of the systems he has developed with success is a chemo wafer put into the tumor if surgery is done. It not only kills the tumor cells but it has no side effects like systemic chemotherapy. We discussed alternative treatments such as rain forest extracts for which we also have access. Dr. Cosgrove said he has no problem with anything we want to try. Another interesting development is an electromagnetic helmet that prevents tumor cells from dividing and multiplying. The electromagnetic waves polarize the cells, stopping their development.
Presently, the plan is as follows: Jack goes to New England Rehabilitation hospital this morning (Saturday). This facility is an acute rehab environment. He will be there until he plateaus or the team decides he is unable to continue. Jack is on 12 mg/day of steroids, (dexadrone). The Dr. wants to see how he responds to this level of treatment. He will not proceed with the chemotherapy (Temodar) originally planned since he did not respond on Round 1. On Wednesday, I will speak with Dr. Cosgrove about my observations of Jack on the increased steroids. The high doses of steroids cause an increase in blood sugar. They are monitoring that very closely and are now giving him doses of insulin, as needed.We covet your prayers and support during this most challenging and breathtaking experience.
Love and blessings,Carolyn

Jack was transported successfully to NE Rehab hospital. The staff began evaluating him and helping him upon his arrival. They are teaching him strategies for helping himself as well as safety precautions.

We had a most pleasant surprise last evening. Our dear friends, Jim and Sunny Nichols, from the Cape Cod area surprised us with a wonderful visit. They visited Jack. Jim and Jack shared Nano-C war stories and had some good laughs. Jim graciously served as the Nano-C interim CEO while the company was doing a CEO search. Jim and Sunny are native Georgians. The children and I had gone to a nearby bistro café for supper. I turned around as Megan was waving at this couple, none other than the Nichols. I told Jim that you know the difference in friends and Southern friends. Friends call and ask when they can visit. Southern friends just show up. We were so blessed by their spiritual and physical embrace. Jim and Sunny’s church sends weekly get well cards through a lady named, Gloria. Jim has also been responsible for churches all over the country, especially churches South and West of here, sending us regular get well cards. We treasure all of the outreach to us.

I visited Jack briefly this morning where he was receiving occupational therapy (OT) and physical therapy (PT). I did not stay long since he was so busy. He has declared that his breakfast tasted like cardboard. He had a waffle and thick oatmeal – I may have to hire a personal chef for him. He must be better since he is complaining about the food.

I saw an encouraging sign while I was there. If the OT opened his left hand for him, he could partially close it. He has had no movement in his hand for weeks. Hopefully, as the swelling subsides, he will continue to see strength and activity in the left side. His spirit is strong We know that spiritual and physical strength is the strength our mighty Lord so mercifully supplies. We are so thankful for the multitude of blessings as we continue to revel in the marvelous mercy that is so richly provided to us.

The medical goal for Jack remains as follows: to provide him with the highest quality of life that he can have for as long as possible. The Dr. reassured us that based on the tumor location that Jack's cognitive abilities, personality, or the quality of his personhood would not be altered by this tumor. The tumor is located in the left side motor cortex of the right frontal lobe. The Psalmist David talks about that we are fearfully and wonderfully made. We are witnessing this amazing quote with Jack's experience.

As we are all preparing for our Thanksgiving feasts, let us all bow our heads with grateful praise to our God, who is the giver of all our abundance.

Happy Thanksgiving!

Carolyn and family