Thursday, September 13, 2007
Tuesday, September 11, 2007
Update
It is hard to believe that it has been 6 years since the 9/11 event in this country. Astonishing! It reminds of a verse that my dear friend Carolee Howell forwarded to me today from II Timothy 1:7:
We do not have to fear the things of this world because God tells us that He “has not given us a spirit of fear, but of power and of love and of a sound mind”. Thanks be to God. This verse is a great comfort to us during our own sudden experience.
Jack is having a good week. He continues to improve his strength. He can now put his left hand on the table and slightly move his index through little finger, albeit slight. He is making his own breakfast (big accomplishment in my book) and basically living independently since I am working more this week. We celebrate each achievement.
We have spoken more with the Doctors who are involved with Jack. All of them seem to think that Jack will do well with treatment. I spoke with a client of mine whose husband had the same diagnosis and oncologist as Jack. Her husband lived 2.5 years. What was encouraging was that he tolerated the treatment very well. Unfortunately, there is a high reoccurrence of growth rate in these tumors with little else to do. Brain tumors are very messy from a medical science perspective. They don’t know what causes them; don’t have much to treat them; don’t know why some do better than others; there are definitely more unknowns than is known in my opinion based on many conversations with various medical professionals.
Jack participated in his monthly company board meeting on Monday. We were so thankful he did that. I am sure his board of directors were happy to hear his voice.
Jack’s biggest immediate challenge is sleep. The steroids to reduce brain swelling makes him feel wired and wide awake. The Dr. gave him something tonight. He wants to try one more night without anything. Sleep is so healing and important. We reduced the steroid dose from 4mg (AM and PM) to 2mg (AM only).
Jack was President of his senior HS class in Tomkinsville, KY. Last summer we attended his 50th high school reunion. He has been receiving cards from all of his KY relatives, HS friends, and former neighbors. Many of you have continued to email, call, and care for our well being. All of you have offered your help any time day or night. We don’t have words to say thank you enough. What a blessing all of you are. We see it all as a demonstration of our Lord’s special hand on us now and are thankful for this amazing experience and opportunity.
I will be updating the blog every few days instead of daily. Jack’s brother, Keith, and his wife, Paula arrive on Thursday evening for 5 days. We are very excited to spend time with them. Jack’s trial run on the radiation is this Friday. His chemo and radiation treatment begin on Monday. Pray that the Lord will continue to sustain us and that He will be honored as we submit to His will for us at this time.
Megan and Jonathan are getting very excited about the moving prospects. Jonathan is coming on September 21-23. We are hoping to have some apartments or condos lined up for him to see. They are embracing this event as an adventure. It is going to be great fun to have all of this energy in our home and among us.
We had another beautiful day in the neighborhood. The rain we got was much needed.
Blessings to all of you,
Carolyn
We do not have to fear the things of this world because God tells us that He “has not given us a spirit of fear, but of power and of love and of a sound mind”. Thanks be to God. This verse is a great comfort to us during our own sudden experience.
Jack is having a good week. He continues to improve his strength. He can now put his left hand on the table and slightly move his index through little finger, albeit slight. He is making his own breakfast (big accomplishment in my book) and basically living independently since I am working more this week. We celebrate each achievement.
We have spoken more with the Doctors who are involved with Jack. All of them seem to think that Jack will do well with treatment. I spoke with a client of mine whose husband had the same diagnosis and oncologist as Jack. Her husband lived 2.5 years. What was encouraging was that he tolerated the treatment very well. Unfortunately, there is a high reoccurrence of growth rate in these tumors with little else to do. Brain tumors are very messy from a medical science perspective. They don’t know what causes them; don’t have much to treat them; don’t know why some do better than others; there are definitely more unknowns than is known in my opinion based on many conversations with various medical professionals.
Jack participated in his monthly company board meeting on Monday. We were so thankful he did that. I am sure his board of directors were happy to hear his voice.
Jack’s biggest immediate challenge is sleep. The steroids to reduce brain swelling makes him feel wired and wide awake. The Dr. gave him something tonight. He wants to try one more night without anything. Sleep is so healing and important. We reduced the steroid dose from 4mg (AM and PM) to 2mg (AM only).
Jack was President of his senior HS class in Tomkinsville, KY. Last summer we attended his 50th high school reunion. He has been receiving cards from all of his KY relatives, HS friends, and former neighbors. Many of you have continued to email, call, and care for our well being. All of you have offered your help any time day or night. We don’t have words to say thank you enough. What a blessing all of you are. We see it all as a demonstration of our Lord’s special hand on us now and are thankful for this amazing experience and opportunity.
I will be updating the blog every few days instead of daily. Jack’s brother, Keith, and his wife, Paula arrive on Thursday evening for 5 days. We are very excited to spend time with them. Jack’s trial run on the radiation is this Friday. His chemo and radiation treatment begin on Monday. Pray that the Lord will continue to sustain us and that He will be honored as we submit to His will for us at this time.
Megan and Jonathan are getting very excited about the moving prospects. Jonathan is coming on September 21-23. We are hoping to have some apartments or condos lined up for him to see. They are embracing this event as an adventure. It is going to be great fun to have all of this energy in our home and among us.
We had another beautiful day in the neighborhood. The rain we got was much needed.
Blessings to all of you,
Carolyn
Monday, September 10, 2007
Letter from Michele Heim, Jack's Neice
Uncle Jack, I have never told you this, but you are a very positive male role model for me, along with Uncle Keith and Grandpa Hugh. You are kind and understanding and you do not judge me. I know you accept me for who I am.
Do you remember in high-school when you helped me with my science project? I laugh when I think about this because I never understood what you were talking about. Now I think about it and it is even funnier. An MIT professor, one of the smartest men in the world, trying to help me with my science project!
I love you Uncle Jack!
Do you remember in high-school when you helped me with my science project? I laugh when I think about this because I never understood what you were talking about. Now I think about it and it is even funnier. An MIT professor, one of the smartest men in the world, trying to help me with my science project!
I love you Uncle Jack!
Letter from Greg and Sandra McRae
Dear Jack:
I have just heard the news as both Sandra and I have been in Australia for the last month away from regular email contact. We are thinking of you and Carolyn at this difficult time -- you are in our prayers. The reason for the trip to Australia was to see my younger brother who is going through a similar experience. There is no question that you and my brother have the key ingredients for survival: an indomitable spirit, fearlessness in facing the unknown, first rate medical care, a loving family and above all a sense of humor.
When I next see you I have a present -- a sample of Victorian brown coal that I collected during a recent visit to Morwell. Now I know that you are one of the world's experts on coal and have probably seen more than enough lumps of coal but there are two reasons for the gift. The first is symbolic. Under pressure the wet soggy mess can be turned into a sparkling diamond, from adversity can come real rewards. The second reason is more pragmatic, the world needs your help in dealing with the energy/climate problem -- coal is going to be an integral part of the solution. Your research in the past is once again at the cutting edge. Jack, we need you to get well soon.
I will be returning to the U.S. from my sabbatical in Norway at the end of September and hope that I can come and visit. At the very least we both have important upcoming birthdays to celebrate on October 16. In the meantime you and your family are in our thoughts. Please do not hesitate to contact either me or Sandra if there is anything we can do to help out.
Your friends
Greg and Sandra
I have just heard the news as both Sandra and I have been in Australia for the last month away from regular email contact. We are thinking of you and Carolyn at this difficult time -- you are in our prayers. The reason for the trip to Australia was to see my younger brother who is going through a similar experience. There is no question that you and my brother have the key ingredients for survival: an indomitable spirit, fearlessness in facing the unknown, first rate medical care, a loving family and above all a sense of humor.
When I next see you I have a present -- a sample of Victorian brown coal that I collected during a recent visit to Morwell. Now I know that you are one of the world's experts on coal and have probably seen more than enough lumps of coal but there are two reasons for the gift. The first is symbolic. Under pressure the wet soggy mess can be turned into a sparkling diamond, from adversity can come real rewards. The second reason is more pragmatic, the world needs your help in dealing with the energy/climate problem -- coal is going to be an integral part of the solution. Your research in the past is once again at the cutting edge. Jack, we need you to get well soon.
I will be returning to the U.S. from my sabbatical in Norway at the end of September and hope that I can come and visit. At the very least we both have important upcoming birthdays to celebrate on October 16. In the meantime you and your family are in our thoughts. Please do not hesitate to contact either me or Sandra if there is anything we can do to help out.
Your friends
Greg and Sandra
Letter from Karen Gleason
Dear Jack,
From the bottom of my heart, I wanted to offer you my sincere thanks to you for being an absolutely amazing mentor and role model to me at the start of my MIT faculty career. Despite all your success and all the competing demands on your time, you freely offered your advice, support, and humor and never made me feel that affirmative action was not the only reason the department hired me. The NSF grant for diamond synthesis that you wrote with Herb and myself was really a turning point in my career. I always admired how deeply you care about science, and not just its hype (exactly how many fullerene models do you have?) and how strongly you could articulate your point with few words and without contentiousness. Your legacy as a faculty member still insprires me even though we are no longer in the same suite. Over the past few years I have enjoyed commiserating with you on occasion about the trials and tribulations of being an entrepeneur. I will always remember that you told me that the easiest way to make a small forture with a materials company was to start with a large fortune. I am still looking for the second easiest way! If there is anything at all that I could do that would help with the challenge you currently face, please do not hesitate to ask.
With my highest regards,
Karen
From the bottom of my heart, I wanted to offer you my sincere thanks to you for being an absolutely amazing mentor and role model to me at the start of my MIT faculty career. Despite all your success and all the competing demands on your time, you freely offered your advice, support, and humor and never made me feel that affirmative action was not the only reason the department hired me. The NSF grant for diamond synthesis that you wrote with Herb and myself was really a turning point in my career. I always admired how deeply you care about science, and not just its hype (exactly how many fullerene models do you have?) and how strongly you could articulate your point with few words and without contentiousness. Your legacy as a faculty member still insprires me even though we are no longer in the same suite. Over the past few years I have enjoyed commiserating with you on occasion about the trials and tribulations of being an entrepeneur. I will always remember that you told me that the easiest way to make a small forture with a materials company was to start with a large fortune. I am still looking for the second easiest way! If there is anything at all that I could do that would help with the challenge you currently face, please do not hesitate to ask.
With my highest regards,
Karen
Sunday, September 9, 2007
Update
We are by God’s grace redesigning our schedules. This weekend has been more relaxing. Jack continues to walk several miles each day; on the order of 4-6 miles/day. He says he wants to do this as long as he is able, as do we.
We actually went out for pizza last evening at a local restaurant. Since his stitches were taken out on Friday - complete with the glue that was used to keep the incision closed - the shaved spot on his head is barely noticeable. Thankfully, his head was not shaved just the area near the incision. When the Dr. was removing the glue, I told Jack that I always knew he was glued together now I could actually see the glue!
Jack still has a lot of difficulty speaking as well as use of his left hand. The physical therapist gave him some hand exercises to do with a rubber band. He said it is not possible to describe how difficult that is. That part of his brain has been impaired by the biopsy so it is as though he wants to do something that he remembers how to do but can't yet physically do.
Our pastor, Gordon Hugenberger visited us yesterday. We had an enjoyable and blessed time spending part of the afternoon with him. Jack commented to him that from the moment he was told there was a mass in his brain, that he has only felt calm. He told our pastor that if someone 2 months ago told him that they had his diagnosis that he would have thought how horrible that would be. With his diagnosis, he has felt none of that horror. I am so thankful. It brings to mind a verse from Philippians 4:4-7: “Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
As Jack said yesterday, this tumor is not about me, it is about HIM, our Lord. Praise God from whom all blessings flow.
I read this many years ago and copied it. The author is unknown. “Remember this, had any other condition been better for you than the one in which you are, divine love would have put you there. You are placed by God in the most suitable circumstances. Be content with such things as you have, since the Lord has ordered all things for your good.”
We are in the most suitable place by His grace for His glory and our good. May you have a wonderful week mindful of our mighty Lord and Savior, Jesus Christ.
We actually went out for pizza last evening at a local restaurant. Since his stitches were taken out on Friday - complete with the glue that was used to keep the incision closed - the shaved spot on his head is barely noticeable. Thankfully, his head was not shaved just the area near the incision. When the Dr. was removing the glue, I told Jack that I always knew he was glued together now I could actually see the glue!
Jack still has a lot of difficulty speaking as well as use of his left hand. The physical therapist gave him some hand exercises to do with a rubber band. He said it is not possible to describe how difficult that is. That part of his brain has been impaired by the biopsy so it is as though he wants to do something that he remembers how to do but can't yet physically do.
Our pastor, Gordon Hugenberger visited us yesterday. We had an enjoyable and blessed time spending part of the afternoon with him. Jack commented to him that from the moment he was told there was a mass in his brain, that he has only felt calm. He told our pastor that if someone 2 months ago told him that they had his diagnosis that he would have thought how horrible that would be. With his diagnosis, he has felt none of that horror. I am so thankful. It brings to mind a verse from Philippians 4:4-7: “Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
As Jack said yesterday, this tumor is not about me, it is about HIM, our Lord. Praise God from whom all blessings flow.
I read this many years ago and copied it. The author is unknown. “Remember this, had any other condition been better for you than the one in which you are, divine love would have put you there. You are placed by God in the most suitable circumstances. Be content with such things as you have, since the Lord has ordered all things for your good.”
We are in the most suitable place by His grace for His glory and our good. May you have a wonderful week mindful of our mighty Lord and Savior, Jesus Christ.
Thursday, September 6, 2007
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.
•••
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
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.
•••
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
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