Update

Today was a fabulous day. Jack and I discussed the pros and cons of experimental drugs. My how our conversations have changed. We made a list of questions. We made some phone calls to MGH and prepared to go to MIT medical dept to have his stitches removed.

We arrived and went to the office that was expecting us. While we were waiting, Dr. Ghaggon sat down. I said I know you from somewhere. He said, I am Dr. Ghaggon. I said, I am Carolyn Howard and you did some minor surgery on me 5 years ago. He immediately remembered. We had some light conversation and we saw the nurse. Don’t forget this event.

We explained to the nurse, who by the way used to rescue us in acute care when our children were babies, that we had some questions. ( MIT medical is such a gem. Courtenay is 34 and has had the same Dr. since she was 5 months old.) She immediately transferred us to see Jack’s primary care Dr. We discussed with him some of our questions and he immediately told us he was going to make some phone calls and that maybe we should consider another opinion. I will hear from him tomorrow. He gave us copies of the full pathology report.

We then went back to the nurse, who could not see the stitches in Jack’s incision. She said I am going to call a surgeon in; I hope someone is available. She reached Dr. Ghaggon who said, I know Carolyn and I will be right up. The Lord is ever providing for the most minute details of our lives. Mathematicians would call this incident probability. We call it divine providence. How blessed we are.

Jack walked to the MIT Coop; we went out to lunch; did another errand at MIT. So if any of you saw some dashing person complete with his Celtics cap, it was the one and only Jack Howard.

Jack walked 2.5 miles yesterday; walked 4 miles today. He has increased strength in his left arm and essentially no limp. He was hoisting steps at MIT, 2 at a time. I never thought I would see this again. His speech seems to be the slowest in returning to normal.

As we struggled with the experimental drug decision, as we prayed for an answer, an answer came clearly this afternoon. I had placed a phone call to his radiologist that we really liked after I found out the neuro-oncologist was out for the week in spite of the fact that he wanted a decision by 9/5. The head research nurse was also out. We felt relieved.

Dr. Shih, the radiologist, returned my call. I explained our concerns and dilemma. I asked her about the trial and what they had observed. She said they have seen no changes with patients that would indicate this drug has some effect. I asked her if she thought Jack should participate. She said she could not recommend it since the tumor has apparently begun to spread after a closer study of the MRIs. She said the experimental drugs impair what she can do and so the radiation effect would not be as good as she can do without it. There are very rigid rules around experimental treatments. She is optimistic that Jack will respond and she wants to have as much opportunity to adjust his treatment as she can. She said the only thing that has really worked on these tumors is radiation. We are now beginning to question using Chemotherapy at all. We will pray and seek advice in this area as well.

Our wonderful neuromuscular massage therapist, Tom Chacko, consulted with a neurologist friend of his. This neurologist suggested only radiation. This will be our next line of prayer and questions to be answered.

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Jonathan insert:

Our conversations with the neurologist, Dr. Plotkin, the radiation oncologist, Dr. Shih, and finally the paperwork provided to us describing dad’s treatment options all state categorically that they expect radiation and chemo to have little to no effect on this kind of tumor. This is consistent with every conversation I’ve had with friends who’ve had loved ones diagnosed with highly aggressive cancers. The only treatments that seem to consistently offer long term health benefits in these cases are holistic and deal largely with nutrition regimens designed to activate the body’s natural healing centers.

That my parents would be open and willing to consider these holistic treatments in addition to being open and willing to forego chemo – which is known to absolutely annihilate people, include the mother of one of my best friends, who developed diabetes as a result of it – is an answer to one of only two prayers I’ve had through this whole situation. You guys can all guess what the other prayer is : )

•••

Jack has decided to participate in a board meeting on Monday and a phone conference regarding his patent work. Life is taking on new meaning and more normalcy. I would not have thought this would be possible.

Our daughter said it best this evening at dinner. “ Mom and Dad, this cancer is a real testimony because it is drawing us closer to the Lord.” She said He has made me more peaceful and accepting of all of these changes. Praise God from whom all blessings flow.

We continue to be surrounded by so much tender, loving, care – true outpourings of so many hearts. We are touched and comforted. We would not change anything. Thank you all for making this journey easy.

Some lighter thoughts. Jack has always had “white coat syndrome” when he visits doctors his blood pressure rises. Even when we were in the emergency room and observing his monitors, Jack commented that his blood pressure was within the normal limits of the white coat syndrome (Only Jack computing normal limits in the ER)! I commented that this trip (all of it) may cure him of this syndrome.

All of you know that talking is something that I am most proficient with. I began at age 6 months and have never shut up. I told Jack, this event may cure me of talking. Please forgive me if I don’t return your calls. At times I have a phone in each hand. The bottom line, Jack and I both may have some benefits from this experience that were not expected!
Have a wonderful weekend.

I will update this blog as changes occur.
Carolyn