From Mike Domenica who is part of our small group Bible Study
I so appreciated his words of encouragement that I decided to post it on the blog.
Mike and his dear wife are in the process of moving to London for 3 years for his work. He called yesterday to check on Jack and me. This email was a response to our call.
Safe travels and haven in London Mike and Jo.
love,
Jack and Carolyn
Carolyn, After we talked yesterday, I was sorry to have to leave. I know the burden on you is heavy. It gets heavier as the months wear on after the initial shock and the initial flight to the Lord provides the support we need. But he knows the purposes and end. I thought about Jack and you most of the night. I kept thinking about Matthew 11:28, "Come unto me all you who are weary and heavy laden, and I will give you rest. Take my yoke upon you and learn of me for I am meek and lowly and will give rest unto your souls. For my yoke is easy and my burden is light." Your burden is heavy, but he will take all you cannot carry and it will become light. I know you and it is hard to let go of burdens. You're like me....a doer...nothing is too heavy. But he shows us the weight of the world for our good so that we will turn to him with abandon, leave it to him.
You know one of my/our favorite hymns:
"How firm a foundation, ye saints of the Lord, is laid for your faith in his excellent word.What more can he say than to you he hath said; to you who to Jesus for refuge have fled.
Fear not I am with thee, O be not dismayed, for I am thy God and will still give thee aid; I'll strengthen thee, help thee and cause thee to stand, upheld by my righteous, omnipotent hand;
When through the deep waters I call thee to go, the rivers of sorrow shall not overflow;For I will be near thee thy troubles to bless, and sanctify to thee thy deepest distress.
The soul that on Jesus hath leaned for repose, I will not, I will not desert to his foes;That soul, that all hell shall endeavor to shake, I'll never, no never, no never forsake."
I'll be praying for you all day today.
In Him,
Mike
Monday, February 18, 2008
Sunday, February 17, 2008
UPDATE February 17, 2008
UPDATE
Februrary 17, 2008
“We are in the army now;
We are in the army now;
Not behind the plow;
You never get rich,
Digging a ditch;
We are in the army now”.
Jack is home now with an army of people caring for him and us. He arrived safely home on Wednesday, February 6. We converted our downstairs family room into a bedroom since we have a bathroom attached to this room. Jonathan and Megan were in charge of the hospital bed delivery and moving the furniture out of that room. Jack’s room now consist of the hospital bed; a recliner that tilts up as needed to boost him to his walker as well as help elevate his legs when he is not walking, and a bedside table.
The first night home brought flash backs of bringing newborn babies home from the hospital. Since Jack has grown accustomed to nurses, aides, and anyone else available at his beck and call, he thought Annette and I should also be as accessible. Annette has settled in very nicely living with us and caring for Jack during the normal day hours. She is allowed to get up and help him briefly during the night but after a few nights of the two of us taking turns, I decided we had to get a night nurse for Jack so we could sleep. Jack would likely be the last one around with the two of us collapsing from exhaustion!
You may remember that Jack was very fond of William at the last rehab facility. William works at another rehab full time from 3:00-11:00 PM five days a week. He arrives around 11:30 PM. He gives Jack a massage and bed bath, tucks him in and cares for Jack as needed during the night. William’s comment to us when I told him how much we appreciated his care for Jack, he immediately replied – “Mr. Jack is my friend, I am very happy to be helping him.” So are we. We feel enormously blessed to have Annette and William caring for Jack. Each night, I go to my bedroom, close the door and go to sleep with no worries as does Annette. The Lord has so graciously provided so abundantly for our needs. Jack is beginning to feel relaxed and comfortable trusting that his needs are provided for.
The other part of the army is made up of visiting nurses, physical therapists, occupational therapists, and others as needed. Thankfully, all of these people are here to help. For the most part, I am at work when the soldiers are marching through Jack’s days.
It has taken Jack over a week to adjust to a very different life than he had in rehab and the hospital. It is a big one for all of us but we feel confident that he is so much better off with us since it creates a more normal environment than going to all of these different facilities. We also have more contact with him and we know he is getting better food.
On Friday February 8th, we looked like Reality TV on steroids. I do not work in my office on Fridays, so I had gone to the health club to workout. I arrived home around noon to meet the visiting nurse and discuss Jack’s care plan. Shortly after her arrival, the physical therapist arrived along with the occupational therapist. While the door was revolving with these people, the plumber arrived to install a new high-line toilet in the bathroom used by Jack as well as the woman who provides Jack’s care givers. While all of this activity was occurring, I received a call from my office manager saying that I had been contacted by one of the major local television stations wanting to interview me for the evening news. The interview was in regard to how to spend the money that some of us are getting from the Bush stimulus package. I agreed to do the interview, immediately changed clothes. I arrived in my office where my office manager was having a heart attack because she had dressed in sweats for the day. She asked her daughter to quickly bring a change of clothes for her; her daughter had a minor car accident on the way to the office. I told you it was reality TV on steroids – I am not finished yet! I completed the interview, left the office, and picked up a friend at the train station who was arriving from Vermont. I brought her to the house to visit with us and then took her to her hotel. While I was taking her to her hotel, Jack thought he could walk to the kitchen without telling anyone and he fell. Thankfully, he was not hurt but he did scrape his elbow and knee slightly. We are hoping he has learned that he cannot do these things anymore. We all slept very well after this crazy day.
The weekend was uneventful. At this point, we had not brought William on for the night shift. Jack awoke on Sunday evening announcing at 1:00 AM that he wanted his breakfast. I think his greatest fear is missing breakfast. It must go back to the days on the farm when a “day’s” work was completed before breakfast was eaten. He still talks about how he would feel faint by the time he got to eat. Annette cooked his breakfast while I tried to convince him it was the middle of the night. It was after this event, that I decided I was going to end up in a worse condition that Jack.
Jack has seemed and even has expressed his apprehension for the days ahead. Courtenay very beautifully told him “Dad, we cannot think about the days ahead, we need to enjoy and find joy in today.” He told her that he knew it but that it was hard when he is in the house all the time with very little to do.
There is so much that goes on each week but one of the things I continue to do is look at what some of our options might be. I met last week with a Dr. Belanger from Lexington, MA who is a Naturapathic Doctor. These people work with MDs but take a more natural approach. Dr. Belanger has specialized in working with cancer patients and brain cancer patients in particular. If any of you is interested in learning more about his work, his website is http://www.lexingtonnaturalhealth.com/. Dr. Belanger has had much success with brain cancer patients. We consulted our Vermont Dr. friend about his work. Our Dr. friend from Vermont, Lynne, has been involved in creating some of Jack’s supplements that we believe helped throughout his traditional treatment. If you are interested in her work which is a nutritional approach, her website is http://www.healthequations.com/. All of these options provide similar things that the Lahey Clinic team is suggesting except the supplements are natural with no side effects compared with the more standard pharmaceutical ones that can have devastating side effects. Stay tuned as this great group of people create a plan of medical care for Jack. I told him we may not beat this disease, but by God’s grace, we will go down fighting. We believe that we have a dream team of professionals interested in Jack’s care as well as the family’s wellbeing.
One of the observations that Lynne made when she saw Jack last week was that she felt that he had been over-radiated in the fall. She described him as looking like he had come out of a war zone. Jack had an appointment on Friday, February 15, 2008 with his neuro-oncologist, Dr. Alderson. We raised all of the questions that we had. We were very satisfied with the answers. The team at Lahey Clinic does not believe that Jack has cancer growing currently. They also admitted that 5% of patients are highly sensitive to the initial treatment and that Jack was in that group (MA General Hospital was responsible for the radiation and chemotherapy). Dr. Alderson did say that patients that have Jack’s level of sensitivity usually have better outcomes from the treatment. We discussed the alternative treatment plans that we have been exploring. Dr. Alderson was familiar with some of this work. He supports whatever we choose to do as does Jack’s primary care physician, Dr. Diamond at MIT. Jack began to cry at the appointment. He said he was so happy that everyone was on the same page. Everyone agrees that Jack is in a healing phase and should do whatever he feels like doing. Dr. Alderson does not want to see him again for an appointment until mid April. Jack said that it was the best appointment that we have had to date. Jack has a day by day calendar with Bible verses. The Friday, February 15 quote from I Chronicles 17:20 best expresses our joy –
“O Lord, there is none like thee, neither is there any God beside thee, according to all that we have heard with our ears.”
Our lovely neighbors, the Morris’s brought us a Valentine Day’s dinner. We continue to receive wonderful contacts in all forms from our friends, family, and colleagues. We need all of you to stand on either side of us and continue to hold us up through this breath-taking journey. We pray that the Lord will bless you in the coming days as we wait patiently on our Lord’s direction and Jack’s healing.
Today is my sister's birthday, Happy Birthday Suzanne.
Also, in case you are wondering what I suggested for the extra checks some of us will receive, I said:
1. If you don't need the money, give it to your favorite qualified charity and receive a tax deduction.
2. If you don't need it but are short on retirement savings, save it in a retirement account and save on taxes.
3. Create a "rainy day" fund if you do not have one.
4. Pay down credit card or other debt.
5. Purchase a necessity that you could not afford.
Be thankful for all of our gifts.
Love,
Carolyn and family
Februrary 17, 2008
“We are in the army now;
We are in the army now;
Not behind the plow;
You never get rich,
Digging a ditch;
We are in the army now”.
Jack is home now with an army of people caring for him and us. He arrived safely home on Wednesday, February 6. We converted our downstairs family room into a bedroom since we have a bathroom attached to this room. Jonathan and Megan were in charge of the hospital bed delivery and moving the furniture out of that room. Jack’s room now consist of the hospital bed; a recliner that tilts up as needed to boost him to his walker as well as help elevate his legs when he is not walking, and a bedside table.
The first night home brought flash backs of bringing newborn babies home from the hospital. Since Jack has grown accustomed to nurses, aides, and anyone else available at his beck and call, he thought Annette and I should also be as accessible. Annette has settled in very nicely living with us and caring for Jack during the normal day hours. She is allowed to get up and help him briefly during the night but after a few nights of the two of us taking turns, I decided we had to get a night nurse for Jack so we could sleep. Jack would likely be the last one around with the two of us collapsing from exhaustion!
You may remember that Jack was very fond of William at the last rehab facility. William works at another rehab full time from 3:00-11:00 PM five days a week. He arrives around 11:30 PM. He gives Jack a massage and bed bath, tucks him in and cares for Jack as needed during the night. William’s comment to us when I told him how much we appreciated his care for Jack, he immediately replied – “Mr. Jack is my friend, I am very happy to be helping him.” So are we. We feel enormously blessed to have Annette and William caring for Jack. Each night, I go to my bedroom, close the door and go to sleep with no worries as does Annette. The Lord has so graciously provided so abundantly for our needs. Jack is beginning to feel relaxed and comfortable trusting that his needs are provided for.
The other part of the army is made up of visiting nurses, physical therapists, occupational therapists, and others as needed. Thankfully, all of these people are here to help. For the most part, I am at work when the soldiers are marching through Jack’s days.
It has taken Jack over a week to adjust to a very different life than he had in rehab and the hospital. It is a big one for all of us but we feel confident that he is so much better off with us since it creates a more normal environment than going to all of these different facilities. We also have more contact with him and we know he is getting better food.
On Friday February 8th, we looked like Reality TV on steroids. I do not work in my office on Fridays, so I had gone to the health club to workout. I arrived home around noon to meet the visiting nurse and discuss Jack’s care plan. Shortly after her arrival, the physical therapist arrived along with the occupational therapist. While the door was revolving with these people, the plumber arrived to install a new high-line toilet in the bathroom used by Jack as well as the woman who provides Jack’s care givers. While all of this activity was occurring, I received a call from my office manager saying that I had been contacted by one of the major local television stations wanting to interview me for the evening news. The interview was in regard to how to spend the money that some of us are getting from the Bush stimulus package. I agreed to do the interview, immediately changed clothes. I arrived in my office where my office manager was having a heart attack because she had dressed in sweats for the day. She asked her daughter to quickly bring a change of clothes for her; her daughter had a minor car accident on the way to the office. I told you it was reality TV on steroids – I am not finished yet! I completed the interview, left the office, and picked up a friend at the train station who was arriving from Vermont. I brought her to the house to visit with us and then took her to her hotel. While I was taking her to her hotel, Jack thought he could walk to the kitchen without telling anyone and he fell. Thankfully, he was not hurt but he did scrape his elbow and knee slightly. We are hoping he has learned that he cannot do these things anymore. We all slept very well after this crazy day.
The weekend was uneventful. At this point, we had not brought William on for the night shift. Jack awoke on Sunday evening announcing at 1:00 AM that he wanted his breakfast. I think his greatest fear is missing breakfast. It must go back to the days on the farm when a “day’s” work was completed before breakfast was eaten. He still talks about how he would feel faint by the time he got to eat. Annette cooked his breakfast while I tried to convince him it was the middle of the night. It was after this event, that I decided I was going to end up in a worse condition that Jack.
Jack has seemed and even has expressed his apprehension for the days ahead. Courtenay very beautifully told him “Dad, we cannot think about the days ahead, we need to enjoy and find joy in today.” He told her that he knew it but that it was hard when he is in the house all the time with very little to do.
There is so much that goes on each week but one of the things I continue to do is look at what some of our options might be. I met last week with a Dr. Belanger from Lexington, MA who is a Naturapathic Doctor. These people work with MDs but take a more natural approach. Dr. Belanger has specialized in working with cancer patients and brain cancer patients in particular. If any of you is interested in learning more about his work, his website is http://www.lexingtonnaturalhealth.com/. Dr. Belanger has had much success with brain cancer patients. We consulted our Vermont Dr. friend about his work. Our Dr. friend from Vermont, Lynne, has been involved in creating some of Jack’s supplements that we believe helped throughout his traditional treatment. If you are interested in her work which is a nutritional approach, her website is http://www.healthequations.com/. All of these options provide similar things that the Lahey Clinic team is suggesting except the supplements are natural with no side effects compared with the more standard pharmaceutical ones that can have devastating side effects. Stay tuned as this great group of people create a plan of medical care for Jack. I told him we may not beat this disease, but by God’s grace, we will go down fighting. We believe that we have a dream team of professionals interested in Jack’s care as well as the family’s wellbeing.
One of the observations that Lynne made when she saw Jack last week was that she felt that he had been over-radiated in the fall. She described him as looking like he had come out of a war zone. Jack had an appointment on Friday, February 15, 2008 with his neuro-oncologist, Dr. Alderson. We raised all of the questions that we had. We were very satisfied with the answers. The team at Lahey Clinic does not believe that Jack has cancer growing currently. They also admitted that 5% of patients are highly sensitive to the initial treatment and that Jack was in that group (MA General Hospital was responsible for the radiation and chemotherapy). Dr. Alderson did say that patients that have Jack’s level of sensitivity usually have better outcomes from the treatment. We discussed the alternative treatment plans that we have been exploring. Dr. Alderson was familiar with some of this work. He supports whatever we choose to do as does Jack’s primary care physician, Dr. Diamond at MIT. Jack began to cry at the appointment. He said he was so happy that everyone was on the same page. Everyone agrees that Jack is in a healing phase and should do whatever he feels like doing. Dr. Alderson does not want to see him again for an appointment until mid April. Jack said that it was the best appointment that we have had to date. Jack has a day by day calendar with Bible verses. The Friday, February 15 quote from I Chronicles 17:20 best expresses our joy –
“O Lord, there is none like thee, neither is there any God beside thee, according to all that we have heard with our ears.”
Our lovely neighbors, the Morris’s brought us a Valentine Day’s dinner. We continue to receive wonderful contacts in all forms from our friends, family, and colleagues. We need all of you to stand on either side of us and continue to hold us up through this breath-taking journey. We pray that the Lord will bless you in the coming days as we wait patiently on our Lord’s direction and Jack’s healing.
Today is my sister's birthday, Happy Birthday Suzanne.
Also, in case you are wondering what I suggested for the extra checks some of us will receive, I said:
1. If you don't need the money, give it to your favorite qualified charity and receive a tax deduction.
2. If you don't need it but are short on retirement savings, save it in a retirement account and save on taxes.
3. Create a "rainy day" fund if you do not have one.
4. Pay down credit card or other debt.
5. Purchase a necessity that you could not afford.
Be thankful for all of our gifts.
Love,
Carolyn and family
Wednesday, February 6, 2008
UPDATE February 6, 2008
UPDATE
February 6, 2008
We are most joyful today. The Lord works in wonderful and mysterious ways. All of you know that our hope and prayer has been that Jack might become strong enough to come home. He hasn’t been home since November 14, 2007 due to all of the issues that have been previously described. We had been contemplating his homecoming. He has made an amazing rebound in his walking with assistance as well as his endurance since he was discharged last week from Lahey Clinic.
As you know, we face many challenges. We never know from where they will come. The challenge this week was in Lexington Healthcare Center, the rehabilitation facility where Jack has been off and on since December. The Center had a sewage pipe break in Jack’s wing. All residents had to be transferred to another part of the Center. There are public health rules that have to be followed in an environment like this one. Jack had been in a private room. When he was transferred, he was put in a room with another lovely man, Sal. There is one problem with Sal, he is being treated for pneumonia. We have been assured that he is not contagious. Also, Jack has had the pneumonia vaccine. None the less, there is much coughing.
We were advised yesterday that if the pipe break was not resolved by today that the residents who had been in Jack’s wing would be transferred to another facility. The children and I went into high gear. I cancelled appointments at work. Jonathan has this week off from work – another amazing, gracious, and providential work of our Lord. Unless there is a glitch in hospital bed delivery as well as the other equipment that will be delivered today, Jack may sleep at home tonight. We are most thankful that he is able to come home as well as the providence of the Lord in that sewage pipe speeding up the process.
Last evening, we visited many of our friends that we have made in the Center. Remember Ann. When we told her Jack was leaving, she immediately wanted to know if we were having a party. I told her that we would celebrate at home with her there in spirit. It is very touching to see Jack’s emotional side as he tearfully squeezed Ann’s hand in a goodbye. We promised to stay in touch with her by phone and cards. Jack then wanted to walk to the nurse’s station and hug the nurses who have so faithfully cared for him in all ways. He has told everyone that the hard part of leaving was saying goodbye to those who have so graciously cared for him. We are thankful for the many caregivers who have such hard work at very low pay with little gratitude. We encourage all of you as well as us to remember to pray for these faithful hands wherever they may be.
Jack’s personal nurse’s assistant, Rita, decided to go back to school to study mechanical engineering at Northeastern (we wish her much success – Jack told her he would be happy to tutor her if she needed any help). The agency that provides our services has found another wonderful lady, Annette, another providential care of our Lord. Annette is able to live with us which will provide excellent continuity for us. We will have to give her time off each week but we hope to use another excellent care provider that we met at the Center. I connected William and the agency and he passed all of the reviews. Another important thing that I have learned in this journey is that if anyone ever needs care, it is important to work through an approved agency. If there are issues with the provider, the agency handles them. If you need replacements, they do the work. They have thoroughly examined backgrounds and credentials for these individuals.
As we celebrate our prayers as well as the legions of prayers going up around the world for us and Jack being answered, it brings to mind the hymn, “A Mighty Fortress is our God”. This hymn was penned using Psalm 46 as the inspiration. I will quote from several of the verses.
Vs. 1 – “God is our refuge and strength, an ever present help in trouble.
Vs. 2 - Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea,
Vs. 3 - though the waters roar and foam (literally this week) and the mountains quake with their surging,
Vs. 4 – There is a river whose streams make glad the city of God, the holy place where the most High dwells.
Vs. 7 – The Lord Almighy is with us; the God of Jacob is our fortress.
Vs.10 – Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth.
Vs.11 – The Lord Almighty is with us; the God of Jacob is our fortress.”
By God’s wonderful and marvelous grace, we can proclaim this Psalm.
Stay tuned as our Jack returns home. We are encouraged and excited for him and us.
Please continue to pray for us as the Lord leads.
Blessings,
Carolyn and family
February 6, 2008
We are most joyful today. The Lord works in wonderful and mysterious ways. All of you know that our hope and prayer has been that Jack might become strong enough to come home. He hasn’t been home since November 14, 2007 due to all of the issues that have been previously described. We had been contemplating his homecoming. He has made an amazing rebound in his walking with assistance as well as his endurance since he was discharged last week from Lahey Clinic.
As you know, we face many challenges. We never know from where they will come. The challenge this week was in Lexington Healthcare Center, the rehabilitation facility where Jack has been off and on since December. The Center had a sewage pipe break in Jack’s wing. All residents had to be transferred to another part of the Center. There are public health rules that have to be followed in an environment like this one. Jack had been in a private room. When he was transferred, he was put in a room with another lovely man, Sal. There is one problem with Sal, he is being treated for pneumonia. We have been assured that he is not contagious. Also, Jack has had the pneumonia vaccine. None the less, there is much coughing.
We were advised yesterday that if the pipe break was not resolved by today that the residents who had been in Jack’s wing would be transferred to another facility. The children and I went into high gear. I cancelled appointments at work. Jonathan has this week off from work – another amazing, gracious, and providential work of our Lord. Unless there is a glitch in hospital bed delivery as well as the other equipment that will be delivered today, Jack may sleep at home tonight. We are most thankful that he is able to come home as well as the providence of the Lord in that sewage pipe speeding up the process.
Last evening, we visited many of our friends that we have made in the Center. Remember Ann. When we told her Jack was leaving, she immediately wanted to know if we were having a party. I told her that we would celebrate at home with her there in spirit. It is very touching to see Jack’s emotional side as he tearfully squeezed Ann’s hand in a goodbye. We promised to stay in touch with her by phone and cards. Jack then wanted to walk to the nurse’s station and hug the nurses who have so faithfully cared for him in all ways. He has told everyone that the hard part of leaving was saying goodbye to those who have so graciously cared for him. We are thankful for the many caregivers who have such hard work at very low pay with little gratitude. We encourage all of you as well as us to remember to pray for these faithful hands wherever they may be.
Jack’s personal nurse’s assistant, Rita, decided to go back to school to study mechanical engineering at Northeastern (we wish her much success – Jack told her he would be happy to tutor her if she needed any help). The agency that provides our services has found another wonderful lady, Annette, another providential care of our Lord. Annette is able to live with us which will provide excellent continuity for us. We will have to give her time off each week but we hope to use another excellent care provider that we met at the Center. I connected William and the agency and he passed all of the reviews. Another important thing that I have learned in this journey is that if anyone ever needs care, it is important to work through an approved agency. If there are issues with the provider, the agency handles them. If you need replacements, they do the work. They have thoroughly examined backgrounds and credentials for these individuals.
As we celebrate our prayers as well as the legions of prayers going up around the world for us and Jack being answered, it brings to mind the hymn, “A Mighty Fortress is our God”. This hymn was penned using Psalm 46 as the inspiration. I will quote from several of the verses.
Vs. 1 – “God is our refuge and strength, an ever present help in trouble.
Vs. 2 - Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea,
Vs. 3 - though the waters roar and foam (literally this week) and the mountains quake with their surging,
Vs. 4 – There is a river whose streams make glad the city of God, the holy place where the most High dwells.
Vs. 7 – The Lord Almighy is with us; the God of Jacob is our fortress.
Vs.10 – Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth.
Vs.11 – The Lord Almighty is with us; the God of Jacob is our fortress.”
By God’s wonderful and marvelous grace, we can proclaim this Psalm.
Stay tuned as our Jack returns home. We are encouraged and excited for him and us.
Please continue to pray for us as the Lord leads.
Blessings,
Carolyn and family
Sunday, February 3, 2008
UPDATE February 3, 2008
UPDATE
February 3, 2008
Today is the first Sunday in February. We have much to rejoice over this week. First and foremost, Jack was finally calibrated to therapeutic levels of anticoagulates, namely cumadin. As Jonathan refers to the medical language, anitcoagulates is 6 figure speak for blood thinners. Jack was in Lahey Clinic for 12 days. Each day we were hopeful for the discharge date but his blood thinner levels known as INR would drop. Therapeutic levels are between 2.0 and 3.0. His INR would rise only to fall again. So we struggled patiently with the rise and fall of the blood levels. He was discharged on Tuesday, January 29th from Lahey Clinic to Lexington Healthcare Center where he had been before.
While he had been at Lahey Clinic, Jack was struggling with the fallout of the stomach flu coupled with the blood clot issue. He was not allowed out of bed the first week. By this time, he was so weak again that it took extraordinary measures to transition him to a chair beside his bed. It was certainly discouraging for all of us, especially Jack.
When Jack arrived back at Lexington Healthcare Center (they had held his room for 12 days), we were greeted with warm hugs and many warm welcomes from the staff and patients. We have been so supported in this facility that it felt like going home. Jack’s first day there was as expected. He was having difficulty transferring from his bed to anywhere. On Thursday, I went to visit him as I do everyday, he was easily transferring from bed to walker to chair to wheelchair with very little assistance. He always needs someone near him due to his lack of balance. We were so excited by this amazing progress. Yesterday (Saturday), I arrived after Jack was already in the dining room at dinner. He had walked with his walker with someone by his side from his room to his dining room and back at the end of the meal. His progress is faster than before. I must add this event is more evidence of answered prayer. He also is working on doing stairs which is very important since we have stairs everywhere in our home. We celebrate each accomplishment. One of the many blessings throughout this journey is Jack’s bright and capable cognitive function is intact. Talking is labored due to having only half of his facial muscles working for word production. He is learning to compensate for this incapacity. I have teased him and told him that he has never liked to talk much and now he actually has a legitimate excuse.
I again have had another round of severe problems with my right hand. Last Sunday evening I did not sleep. The pain level in my right hand and wrist was 15 on a scale of 1 to 10. I finally went to the Dr. on Monday morning who sent me to an orthopedist Monday afternoon. I have carpal tunnel tendonitis. I was given a shot of novocain and cortisone to reduce pain and inflammation. I was also given an arm brace and exercises to do 3 times per day. Thankfully, it has all helped. I am allergic to all non steroid anti-inflammatory medications so they have to resort to the steroid drugs. Jack wears a brace at night for support on his left paralyzed arm. When I came in with my right hand in a brace, he immediately accused me of being competitive with him. I told him, at least, that it was my right side and not my left and that the last time I checked two halves make a whole. We must keep laughing!
For those of you that have asked about Jack getting to read any of the comments and postings, I print them for him to read. I usually read them aloud to him and we laugh and cry at the many memories, many wonderful comments, and letters from our dear, dear friends from near and far, old and new. We are truly blessed by the internet and how the Lord has advanced technology in such ways that it keeps us all connected in so many ways. I think the way we are most connected as our dear friend Judy Ericson so beautifully stated, is through our prayers.
Jack was being very assertive last evening. Keep in mind that Jack’s left side is extremely weak and at the arm, hand, and shoulder level, he is completely paralyzed. His left leg and foot have strength but not a lot of flexibility. When he is walking with a left leg brace and his hemi-walker (a half walker with 4 feet), he can get pretty far as I have mentioned. I was leaving last night when the nurse started yelling for me. She wanted to know why I had left him in the bathroom unattended. I told her that I had left him in his chair. He is never to go anywhere unassisted due to the high risk of falling. I went back to his room and told him he got caught. I knew this was coming eventually because one of his goals is to get from A to B without anyone around. He wants his walker near him at night in the event the building catches on fire. Jack, the “master of the flame” in his research has never stopped thinking about fire even in his condition for any of you that were worried! So for those of you who remember Jack in his growing up years and fondly remember all of the mischief he got in, you should not be surprised at this adverse activity. Hopefully, Jack will not try this again given the potential consequences. You can take the boy off the farm but you cannot take the farm out of the boy. Farm boys are too self sufficient, especially this one.
We received a card this week from clients of mine that beautifully expresses our journey
“Just as a quilt comes together by many loving hands, there are times when we are held together by many loving hearts.” As all of you hold as close at heart, we too hold you close at heart. It reminds me of Psalm 91 which we have been reminded of by our pastor as well as dear friends, David and Linda Howard (no relation, a former college roommate of Jack's) in South Carolina:
Psalm 91:1, 2, 11
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
For he will command his angels concerning you to guard you in all His ways.
Thank you for your continued love, hope, concern, and support throughout this journey with your many letters, cards, calls, and emails. We are most grateful that all of you are part of our lives.
Blessings,
Carolyn and family
February 3, 2008
Today is the first Sunday in February. We have much to rejoice over this week. First and foremost, Jack was finally calibrated to therapeutic levels of anticoagulates, namely cumadin. As Jonathan refers to the medical language, anitcoagulates is 6 figure speak for blood thinners. Jack was in Lahey Clinic for 12 days. Each day we were hopeful for the discharge date but his blood thinner levels known as INR would drop. Therapeutic levels are between 2.0 and 3.0. His INR would rise only to fall again. So we struggled patiently with the rise and fall of the blood levels. He was discharged on Tuesday, January 29th from Lahey Clinic to Lexington Healthcare Center where he had been before.
While he had been at Lahey Clinic, Jack was struggling with the fallout of the stomach flu coupled with the blood clot issue. He was not allowed out of bed the first week. By this time, he was so weak again that it took extraordinary measures to transition him to a chair beside his bed. It was certainly discouraging for all of us, especially Jack.
When Jack arrived back at Lexington Healthcare Center (they had held his room for 12 days), we were greeted with warm hugs and many warm welcomes from the staff and patients. We have been so supported in this facility that it felt like going home. Jack’s first day there was as expected. He was having difficulty transferring from his bed to anywhere. On Thursday, I went to visit him as I do everyday, he was easily transferring from bed to walker to chair to wheelchair with very little assistance. He always needs someone near him due to his lack of balance. We were so excited by this amazing progress. Yesterday (Saturday), I arrived after Jack was already in the dining room at dinner. He had walked with his walker with someone by his side from his room to his dining room and back at the end of the meal. His progress is faster than before. I must add this event is more evidence of answered prayer. He also is working on doing stairs which is very important since we have stairs everywhere in our home. We celebrate each accomplishment. One of the many blessings throughout this journey is Jack’s bright and capable cognitive function is intact. Talking is labored due to having only half of his facial muscles working for word production. He is learning to compensate for this incapacity. I have teased him and told him that he has never liked to talk much and now he actually has a legitimate excuse.
I again have had another round of severe problems with my right hand. Last Sunday evening I did not sleep. The pain level in my right hand and wrist was 15 on a scale of 1 to 10. I finally went to the Dr. on Monday morning who sent me to an orthopedist Monday afternoon. I have carpal tunnel tendonitis. I was given a shot of novocain and cortisone to reduce pain and inflammation. I was also given an arm brace and exercises to do 3 times per day. Thankfully, it has all helped. I am allergic to all non steroid anti-inflammatory medications so they have to resort to the steroid drugs. Jack wears a brace at night for support on his left paralyzed arm. When I came in with my right hand in a brace, he immediately accused me of being competitive with him. I told him, at least, that it was my right side and not my left and that the last time I checked two halves make a whole. We must keep laughing!
For those of you that have asked about Jack getting to read any of the comments and postings, I print them for him to read. I usually read them aloud to him and we laugh and cry at the many memories, many wonderful comments, and letters from our dear, dear friends from near and far, old and new. We are truly blessed by the internet and how the Lord has advanced technology in such ways that it keeps us all connected in so many ways. I think the way we are most connected as our dear friend Judy Ericson so beautifully stated, is through our prayers.
Jack was being very assertive last evening. Keep in mind that Jack’s left side is extremely weak and at the arm, hand, and shoulder level, he is completely paralyzed. His left leg and foot have strength but not a lot of flexibility. When he is walking with a left leg brace and his hemi-walker (a half walker with 4 feet), he can get pretty far as I have mentioned. I was leaving last night when the nurse started yelling for me. She wanted to know why I had left him in the bathroom unattended. I told her that I had left him in his chair. He is never to go anywhere unassisted due to the high risk of falling. I went back to his room and told him he got caught. I knew this was coming eventually because one of his goals is to get from A to B without anyone around. He wants his walker near him at night in the event the building catches on fire. Jack, the “master of the flame” in his research has never stopped thinking about fire even in his condition for any of you that were worried! So for those of you who remember Jack in his growing up years and fondly remember all of the mischief he got in, you should not be surprised at this adverse activity. Hopefully, Jack will not try this again given the potential consequences. You can take the boy off the farm but you cannot take the farm out of the boy. Farm boys are too self sufficient, especially this one.
We received a card this week from clients of mine that beautifully expresses our journey
“Just as a quilt comes together by many loving hands, there are times when we are held together by many loving hearts.” As all of you hold as close at heart, we too hold you close at heart. It reminds me of Psalm 91 which we have been reminded of by our pastor as well as dear friends, David and Linda Howard (no relation, a former college roommate of Jack's) in South Carolina:
Psalm 91:1, 2, 11
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
For he will command his angels concerning you to guard you in all His ways.
Thank you for your continued love, hope, concern, and support throughout this journey with your many letters, cards, calls, and emails. We are most grateful that all of you are part of our lives.
Blessings,
Carolyn and family
Sunday, January 27, 2008
UPDATE January 27, 2008
UPDATE
January 27, 2008
We are patiently waiting on the Lord these days. Jack remains at Lahey Clinic where they are trying to regulate his blood levels with the blood thinner. According to the Dr., it takes several days to get therapeutic levels of the blood thinner in his system. They are hopeful that he will be discharged by Tuesday. We too are hopeful. We are hoping that after 2-3 weeks back at rehab for endurance and strength training that we will be able to bring him home. As you know, it is our ongoing hope.
Some good things that have happened, the swelling in his leg and foot have completely abated. His leg brace now looks like it was made for someone else. The good news on the brace is that it is easily adjusted by the orthodic and brace specialist. On a side note, we have met and learned to appreciate some of the neatest people in this journey. These are people who love people and love helping people. We love them for helping others and us. Jack also has recovered from the stomach flu that we all have had, and is regaining some of the strength he has lost, as are we.
We now have a new nurse assistant for Jack. Her name is Rita. She is from Uganda and has been here for 5 years. She is very lovely and to quote Jack, “she is very easy to be around”. Elizabeth could no longer work with us.
It is very difficult to watch someone you love so much suffer as Jack is suffering. He is in no pain other than the struggle to move and function with basic body skills. He needs help with everything. We are thankful that his mind is still very strong. We are thankful that he has no pain. We are thankful that we still have each other and our families. The Lord is truly merciful and gracious in more ways that we can express. We are most thankful that the Lord has blessed us with the knowledge of Himself. As Isaiah stated in 41:10 – “Do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you; I will uphold you with my victorious right hand.” We are truly God’s servants being upheld by His victorious right hand. This experience is not for the faint of heart such as we are, so we can only give our Lord all of the credit for all that he is doing in our lives.
For those of you have been following Frank and Ann from the rehab center. Frank wrote us a letter letting us know that he is adjusting to being home and is enjoying it. I saw Ann at the rehab last week when I stopped by to pick up some things for Jack. She gave me a big hug and wanted to know how Jack was doing. I am so impressed with Lexington Healthcare Center. They have held Jack’s room. They have called to see how we are doing. They were so excited to see me when I stopped in last week. What a joy to make a small difference in someone’s life. I pray that each of us will continue to embrace each other and those around us as our lives teach us so many lessons.
Blessings,
Carolyn
January 27, 2008
We are patiently waiting on the Lord these days. Jack remains at Lahey Clinic where they are trying to regulate his blood levels with the blood thinner. According to the Dr., it takes several days to get therapeutic levels of the blood thinner in his system. They are hopeful that he will be discharged by Tuesday. We too are hopeful. We are hoping that after 2-3 weeks back at rehab for endurance and strength training that we will be able to bring him home. As you know, it is our ongoing hope.
Some good things that have happened, the swelling in his leg and foot have completely abated. His leg brace now looks like it was made for someone else. The good news on the brace is that it is easily adjusted by the orthodic and brace specialist. On a side note, we have met and learned to appreciate some of the neatest people in this journey. These are people who love people and love helping people. We love them for helping others and us. Jack also has recovered from the stomach flu that we all have had, and is regaining some of the strength he has lost, as are we.
We now have a new nurse assistant for Jack. Her name is Rita. She is from Uganda and has been here for 5 years. She is very lovely and to quote Jack, “she is very easy to be around”. Elizabeth could no longer work with us.
It is very difficult to watch someone you love so much suffer as Jack is suffering. He is in no pain other than the struggle to move and function with basic body skills. He needs help with everything. We are thankful that his mind is still very strong. We are thankful that he has no pain. We are thankful that we still have each other and our families. The Lord is truly merciful and gracious in more ways that we can express. We are most thankful that the Lord has blessed us with the knowledge of Himself. As Isaiah stated in 41:10 – “Do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you; I will uphold you with my victorious right hand.” We are truly God’s servants being upheld by His victorious right hand. This experience is not for the faint of heart such as we are, so we can only give our Lord all of the credit for all that he is doing in our lives.
For those of you have been following Frank and Ann from the rehab center. Frank wrote us a letter letting us know that he is adjusting to being home and is enjoying it. I saw Ann at the rehab last week when I stopped by to pick up some things for Jack. She gave me a big hug and wanted to know how Jack was doing. I am so impressed with Lexington Healthcare Center. They have held Jack’s room. They have called to see how we are doing. They were so excited to see me when I stopped in last week. What a joy to make a small difference in someone’s life. I pray that each of us will continue to embrace each other and those around us as our lives teach us so many lessons.
Blessings,
Carolyn
Monday, January 21, 2008
HAPPY NEW YEAR 2008 AND UPDATES
January 21, 2008
Jack is back in the hospital with another blood clot after he was attacked by a stomach flu. We have all had a version of this latest beast. It grounded me which is not surprising since I was running on overdrive and way past a reserve of any kind. This clot seems to be worse since they are not letting him out of bed for anything. I have been so sick that I have not gotten out to even see him. He is learning now that he can advocate for himself.
Yesterday, he declared to the nurse that he was becoming hearing impaired due to the decibel level of the IV alarm going off. She challenged him about decibels - wrong thing to do!!! He then informed her that he had been the safety officer in Chemical Engineering at MIT. She will likely not forget about decibels. Don't lose hope, Jack has not lost his cognition, thankfully.
I have attached our NEW YEAR 2008 letter that we have mailed to some who do not know of our circumstances but for those of you that have followed our events, we wish you the same blessings. The picture is not attached however to the blog because I haven't figured out how to do that yet!
Happy New Year Letter
Hello to all of our Friends:
This letter is way overdue but our lives have been very chaotic as you can read below. I want to begin by quoting from Psalm 90:12 – “So teach us to number our days, that we may apply our hearts to wisdom.” The Lord has made this verse very evident to us this year.
We have had a breathtaking year that eclipses all other events in our lives. On August 22, Jack was diagnosed with grade 4 multiforme glioblastoma (the most aggressive form of brain cancer). The prognosis is bleak. Jack is currently in and out of hospitals and rehabilitation environments. He is essentially paralyzed on his left side. He has gone through radiation and chemotherapy. Initially, we were told the tumor was inoperable due to its location. It was on the right frontal lobe. It was the size of a racket ball (golf ball size). It affects motor function on the left side of his body. Jack has no function of his left arm and hand. He has difficulty talking due to the weakness in the left side of his face. Word production is difficult with only one side of your face muscles working. He can walk with assistance with a leg brace, a walker, and with someone by his side for balance. As you can begin to imagine, our lives our forever changed.
We have hit a number of “potholes”. Jack had a seizure and was hospitalized on November 14. After hospitalization, he was transferred to an acute rehabilitation hospital. After 10 days there, he developed 2 blood clots behind his left knee and in right groin. He had vascular surgery to place a filter in his groin to prevent clot migration. He is now on daily blood-thinner. Two days after that surgery, the doctors decided that they must remove the tumor and necrotic tissue in order to relieve pressure and reduce the amount of steroids he was taking. The tumor appeared to have progressed coupled with a large amount of dead tissue. When they removed his tumor, it was dead. This tumor type has tentacles so the doctors have told us it will return but so far there is no evidence of this happening. Three weeks out from surgery, he developed pneumonia and a sudden, acute drop in his sodium level. From what we were told, sodium levels are problematic with brain cancer patients. He spent Christmas in the hospital. He was returned to rehab where he had been making great endurance strides. Last week after he developed the stomach flu, his left leg began to swell again. He went back to the hospital where they discovered he has another blood clot. This one is worse. He is on an anti-coagulate via IV and he is not allowed out of bed even for the bathroom. We have been informed that brain cancer patients are also prone to blood clots as well. He will likely go back to rehab but we are hoping that he can soon return home with 24/7 care. He has not been home since November 14.
By the grace of God, his spirits are amazing. His ability for cognition is also amazing. Where the cancer is/was located does not affect reasoning, problem solving, and personality. We are most thankful for these blessings. The journey has been challenging and we are certain it will continue to be. We are most thankful that the Lord sustains moment by moment. Jack’s comment was “many people do not have the opportunity to have this much majesty and beauty in their lives. I feel very content; my cup runs over.” Our friends, family, colleagues, and neighbors have been caring, encouraging, comforting, and there for us. We have truly been embraced during this time of sorrow and joy.
Courtenay, Jonathan, and Megan are nearby now. Jonathan and Megan left friends, family, and jobs to return to Boston to support us through this experience. They bought a condo in Somerville and are six miles from us. They have all been amazing and an enormous blessing and encouragement to us. I continue to work with the help of fabulous office staff. Jack consults with his CEO of his company when he is needed. In the face of these events, life continues.
We trust that each of you will have a blessed 2008. We have no idea what tomorrow holds, we are confident that our Lord holds tomorrow. If you want to follow the Howard events, we have kept a website since the very beginning if you desire the details of our lives. It is http://howardupdates.blogspot.com. The picture enclosed was taken at Thanksgiving outside one of the rehabilitation hospital where Jack has been since his surgeries.
“May the Lord bless and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.” Numbers 6:24-26.
Love and Happy New Year,
Carolyn, Jack, and family
Jack is back in the hospital with another blood clot after he was attacked by a stomach flu. We have all had a version of this latest beast. It grounded me which is not surprising since I was running on overdrive and way past a reserve of any kind. This clot seems to be worse since they are not letting him out of bed for anything. I have been so sick that I have not gotten out to even see him. He is learning now that he can advocate for himself.
Yesterday, he declared to the nurse that he was becoming hearing impaired due to the decibel level of the IV alarm going off. She challenged him about decibels - wrong thing to do!!! He then informed her that he had been the safety officer in Chemical Engineering at MIT. She will likely not forget about decibels. Don't lose hope, Jack has not lost his cognition, thankfully.
I have attached our NEW YEAR 2008 letter that we have mailed to some who do not know of our circumstances but for those of you that have followed our events, we wish you the same blessings. The picture is not attached however to the blog because I haven't figured out how to do that yet!
Happy New Year Letter
Hello to all of our Friends:
This letter is way overdue but our lives have been very chaotic as you can read below. I want to begin by quoting from Psalm 90:12 – “So teach us to number our days, that we may apply our hearts to wisdom.” The Lord has made this verse very evident to us this year.
We have had a breathtaking year that eclipses all other events in our lives. On August 22, Jack was diagnosed with grade 4 multiforme glioblastoma (the most aggressive form of brain cancer). The prognosis is bleak. Jack is currently in and out of hospitals and rehabilitation environments. He is essentially paralyzed on his left side. He has gone through radiation and chemotherapy. Initially, we were told the tumor was inoperable due to its location. It was on the right frontal lobe. It was the size of a racket ball (golf ball size). It affects motor function on the left side of his body. Jack has no function of his left arm and hand. He has difficulty talking due to the weakness in the left side of his face. Word production is difficult with only one side of your face muscles working. He can walk with assistance with a leg brace, a walker, and with someone by his side for balance. As you can begin to imagine, our lives our forever changed.
We have hit a number of “potholes”. Jack had a seizure and was hospitalized on November 14. After hospitalization, he was transferred to an acute rehabilitation hospital. After 10 days there, he developed 2 blood clots behind his left knee and in right groin. He had vascular surgery to place a filter in his groin to prevent clot migration. He is now on daily blood-thinner. Two days after that surgery, the doctors decided that they must remove the tumor and necrotic tissue in order to relieve pressure and reduce the amount of steroids he was taking. The tumor appeared to have progressed coupled with a large amount of dead tissue. When they removed his tumor, it was dead. This tumor type has tentacles so the doctors have told us it will return but so far there is no evidence of this happening. Three weeks out from surgery, he developed pneumonia and a sudden, acute drop in his sodium level. From what we were told, sodium levels are problematic with brain cancer patients. He spent Christmas in the hospital. He was returned to rehab where he had been making great endurance strides. Last week after he developed the stomach flu, his left leg began to swell again. He went back to the hospital where they discovered he has another blood clot. This one is worse. He is on an anti-coagulate via IV and he is not allowed out of bed even for the bathroom. We have been informed that brain cancer patients are also prone to blood clots as well. He will likely go back to rehab but we are hoping that he can soon return home with 24/7 care. He has not been home since November 14.
By the grace of God, his spirits are amazing. His ability for cognition is also amazing. Where the cancer is/was located does not affect reasoning, problem solving, and personality. We are most thankful for these blessings. The journey has been challenging and we are certain it will continue to be. We are most thankful that the Lord sustains moment by moment. Jack’s comment was “many people do not have the opportunity to have this much majesty and beauty in their lives. I feel very content; my cup runs over.” Our friends, family, colleagues, and neighbors have been caring, encouraging, comforting, and there for us. We have truly been embraced during this time of sorrow and joy.
Courtenay, Jonathan, and Megan are nearby now. Jonathan and Megan left friends, family, and jobs to return to Boston to support us through this experience. They bought a condo in Somerville and are six miles from us. They have all been amazing and an enormous blessing and encouragement to us. I continue to work with the help of fabulous office staff. Jack consults with his CEO of his company when he is needed. In the face of these events, life continues.
We trust that each of you will have a blessed 2008. We have no idea what tomorrow holds, we are confident that our Lord holds tomorrow. If you want to follow the Howard events, we have kept a website since the very beginning if you desire the details of our lives. It is http://howardupdates.blogspot.com. The picture enclosed was taken at Thanksgiving outside one of the rehabilitation hospital where Jack has been since his surgeries.
“May the Lord bless and keep you; the Lord make His face shine upon you and be gracious to you; the Lord turn His face toward you and give you peace.” Numbers 6:24-26.
Love and Happy New Year,
Carolyn, Jack, and family
Tuesday, January 15, 2008
UPDATE January 15, 2008
UPDATE
JANUARY 14, 2008
We had about 8 inches of new snow today. Early January had spoiled us with warmer temperatures and much melting of the December snows. So far this winter, we have had 35 inches of the white stuff. Our daughter-in-law hasn’t had enough yet, thankfully.
Jack has continued to improve. His walking endurance has been improving slowly. Today he actually had some work on stairs. He has not done any stairs since November 14. Since our house has stairs everywhere, it is very desirable to work on stairs. He has a very long journey before he gets back to where he was on November 14. He is so determined that with much hard work, he will give it his best try.
Jack had his MRI scan on Friday. He commented that it was the worst one yet to the point that he thinks that when he has the next one that he may need some medication.
If you have never had one, it is a daunting experience. Jack has a dye injected into his vein so that any tumor, inflammation, or swelling will light up in his brain. He is then placed on and strapped down on a board. He is then pushed into a tube like tunnel. It is very important not to move in the process. It takes about 45 minutes. Once the machine is turned on, it sounds like a jack hammer that breaks up road pavement. If a person has claustrophobia, they are in serious trouble. If you don’t have claustrophobia, you probably will after these test especially if it is part of a routine.
The test results looked worse than the one after surgery. It showed more swelling and more tissue death. We had been warned early on by the radiologist that his MRI scans would look worse for several months. She said that it takes about a year for the brain to heal from the radiation. The good news is that they do not see any mass growth. The other good news we got was that the chemotherapy test on the “live” tissue from Oncotech in CA and it showed no live cancer cells at all. That information does not mean that there are none left in the brain but not to find any in the sample is remarkable and encouraging. The doctors recommended that he consider using an angiogenesis drug for 3 cycles – 1 treatment every 2 weeks for 6 weeks. This drug is known to cut off the blood supply to any tumor cells that may remain. Jack has agreed to do this treatment.
I had intended to post this latest update last evening but I developed acute tendonitis in my right hand and could not move my fingers. After doing my home remedies and going to a neuromuscular massage therapist today, my hand is red, swollen, and sore but I do have mobility. One of the problems that I continue to have other than fatigue is foot and hand pain. I am convinced it is the marathon I am running with very little rest that is causing these issues which are new for me. It makes me think of a saying my grandfather had – “the pain he thought was going to be fatal yesterday had been replaced by a new one today”!!! Do I ever understand that saying! Getting old is not for sissies! I fully hope that my hand will be much better tomorrow.
On a Jack note, you may remember that Jack was keeping a detailed journal of this experience. Since he was first admitted to the hospital, the copious notes had stopped. This evening when I went to see him, he had written four pages of things he wanted to ask the doctor, me, as well as observations about events of the day. I was so encouraged since he has shown no interest in writing or reading anything for weeks now, especially since his brain surgery. I have been reading to him and he enjoys that activity but he hasn’t wanted to do it himself. He is getting stronger daily. The road ahead is uncertain, the road behind us has been challenging. Our hope and desire is to glorify our Lord throughout this experience. It makes me think of a verse in I Peter 4:12. “Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened to you.” I Peter 1:7 – “That the trial of your faith, being much more precious than of gold that perishes, though it be tried with fire, might be found unto praise and honor and glory at the appearing of Jesus Christ.” The question arises how can we glorify God in the midst of fiery trials? (This is copied from a pastor’s bulletin. I thought it worth sharing in a condensed form.)
By acknowledging His providence in all things. Nothing happens by chance. The purpose of the Lord is at work in all of our trials.
We glorify God in the midst of fiery trials by acknowledging his wisdom in all He does.
We glorify God in the midst of fiery trials by acknowledging all He brings to pass is for our benefit.
We glorify God in the midst of fiery trials by acknowledging His power to sustain us while passing through the fire.
We glorify God in the midst of fiery trials by trusting Him at all times. From Isaiah 12:2 – “Behold, God is my salvation: I will trust and not be afraid.”
The Lord continues to sustain us and bless us in the midst of this fiery trial.
One of the many blessings that we are experiencing is enjoying the other patients at the rehab facility. You may remember Frank. Last week Frank graduated from rehab to home successfully. We had a party. Since most residents are on a special diet, I could not bring food for anyone (I did bring Frank and Jack ice cream since they are not on a special diet.) I got Frank a purple and green sponge like crown for him to wear as well as 3 helium star balloons to tie on his wheel chair. Ann, another resident, who has a very flat affect in her voice intonation, suggested we needed to sing a song. I asked her if she could sing – she said only Happy Birthday. So I suggested we use the tune of Happy Birthday and change it to Happy Graduation Day. Everyone joined in. We had a great time. We called to make sure Frank had successfully gotten home and he had. On another note, Ann announced this evening that she is graduating on Thursday and then proceeded to inquire as to what we were going to do on Wednesday. As you can see, we have a very good time under these circumstances. My hope is that when I am sitting in one of these seats of these infirmed people someday that someone will come and brighten my day.
On Saturday, I leave for LA to attend a one day meeting and rest for 3 days. Hopefully, I can recharge my batteries which need replacing at the moment. The children are in charge. They are doing a great job at helping. Courtenay spent Saturday afternoon with Jack and took in a card game to play which I thought was a great idea. Other residents joined in. Jonathan and Megan and Tibit come when they can and make us laugh.
Tibit is a 3.5 pound daucsand/poodle mix who is black and curly like a poodle with a little body and tail like a daucsand. She is fun, funny, and cuddly. I am most happy to dog sit. She makes us laugh and she already knows she is loved. If you want to see pictures, you can visit Jonathan’s website at www.apelike.net/3000-mi.
Jack’s sister, Myra, sent the following to me that I think is also worth sharing.
WHAT CANCER CANNOT DO
Cancer cannot cripple love.
Cancer cannot shatter hope.
Cancer cannot corrode faith.
Cancer cannot destroy peace.
Cancer cannot kill friendships.
Cancer cannot suppress memories.
Cancer cannot silence courage.
Cancer cannot invade the soul.
Cancer cannot steal eternal life.
Cancer cannot conquer the spirit.
Thank you to all who call and visit. Knowing so many care so much is very appreciated.
Blessings,
Carolyn
JANUARY 14, 2008
We had about 8 inches of new snow today. Early January had spoiled us with warmer temperatures and much melting of the December snows. So far this winter, we have had 35 inches of the white stuff. Our daughter-in-law hasn’t had enough yet, thankfully.
Jack has continued to improve. His walking endurance has been improving slowly. Today he actually had some work on stairs. He has not done any stairs since November 14. Since our house has stairs everywhere, it is very desirable to work on stairs. He has a very long journey before he gets back to where he was on November 14. He is so determined that with much hard work, he will give it his best try.
Jack had his MRI scan on Friday. He commented that it was the worst one yet to the point that he thinks that when he has the next one that he may need some medication.
If you have never had one, it is a daunting experience. Jack has a dye injected into his vein so that any tumor, inflammation, or swelling will light up in his brain. He is then placed on and strapped down on a board. He is then pushed into a tube like tunnel. It is very important not to move in the process. It takes about 45 minutes. Once the machine is turned on, it sounds like a jack hammer that breaks up road pavement. If a person has claustrophobia, they are in serious trouble. If you don’t have claustrophobia, you probably will after these test especially if it is part of a routine.
The test results looked worse than the one after surgery. It showed more swelling and more tissue death. We had been warned early on by the radiologist that his MRI scans would look worse for several months. She said that it takes about a year for the brain to heal from the radiation. The good news is that they do not see any mass growth. The other good news we got was that the chemotherapy test on the “live” tissue from Oncotech in CA and it showed no live cancer cells at all. That information does not mean that there are none left in the brain but not to find any in the sample is remarkable and encouraging. The doctors recommended that he consider using an angiogenesis drug for 3 cycles – 1 treatment every 2 weeks for 6 weeks. This drug is known to cut off the blood supply to any tumor cells that may remain. Jack has agreed to do this treatment.
I had intended to post this latest update last evening but I developed acute tendonitis in my right hand and could not move my fingers. After doing my home remedies and going to a neuromuscular massage therapist today, my hand is red, swollen, and sore but I do have mobility. One of the problems that I continue to have other than fatigue is foot and hand pain. I am convinced it is the marathon I am running with very little rest that is causing these issues which are new for me. It makes me think of a saying my grandfather had – “the pain he thought was going to be fatal yesterday had been replaced by a new one today”!!! Do I ever understand that saying! Getting old is not for sissies! I fully hope that my hand will be much better tomorrow.
On a Jack note, you may remember that Jack was keeping a detailed journal of this experience. Since he was first admitted to the hospital, the copious notes had stopped. This evening when I went to see him, he had written four pages of things he wanted to ask the doctor, me, as well as observations about events of the day. I was so encouraged since he has shown no interest in writing or reading anything for weeks now, especially since his brain surgery. I have been reading to him and he enjoys that activity but he hasn’t wanted to do it himself. He is getting stronger daily. The road ahead is uncertain, the road behind us has been challenging. Our hope and desire is to glorify our Lord throughout this experience. It makes me think of a verse in I Peter 4:12. “Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened to you.” I Peter 1:7 – “That the trial of your faith, being much more precious than of gold that perishes, though it be tried with fire, might be found unto praise and honor and glory at the appearing of Jesus Christ.” The question arises how can we glorify God in the midst of fiery trials? (This is copied from a pastor’s bulletin. I thought it worth sharing in a condensed form.)
By acknowledging His providence in all things. Nothing happens by chance. The purpose of the Lord is at work in all of our trials.
We glorify God in the midst of fiery trials by acknowledging his wisdom in all He does.
We glorify God in the midst of fiery trials by acknowledging all He brings to pass is for our benefit.
We glorify God in the midst of fiery trials by acknowledging His power to sustain us while passing through the fire.
We glorify God in the midst of fiery trials by trusting Him at all times. From Isaiah 12:2 – “Behold, God is my salvation: I will trust and not be afraid.”
The Lord continues to sustain us and bless us in the midst of this fiery trial.
One of the many blessings that we are experiencing is enjoying the other patients at the rehab facility. You may remember Frank. Last week Frank graduated from rehab to home successfully. We had a party. Since most residents are on a special diet, I could not bring food for anyone (I did bring Frank and Jack ice cream since they are not on a special diet.) I got Frank a purple and green sponge like crown for him to wear as well as 3 helium star balloons to tie on his wheel chair. Ann, another resident, who has a very flat affect in her voice intonation, suggested we needed to sing a song. I asked her if she could sing – she said only Happy Birthday. So I suggested we use the tune of Happy Birthday and change it to Happy Graduation Day. Everyone joined in. We had a great time. We called to make sure Frank had successfully gotten home and he had. On another note, Ann announced this evening that she is graduating on Thursday and then proceeded to inquire as to what we were going to do on Wednesday. As you can see, we have a very good time under these circumstances. My hope is that when I am sitting in one of these seats of these infirmed people someday that someone will come and brighten my day.
On Saturday, I leave for LA to attend a one day meeting and rest for 3 days. Hopefully, I can recharge my batteries which need replacing at the moment. The children are in charge. They are doing a great job at helping. Courtenay spent Saturday afternoon with Jack and took in a card game to play which I thought was a great idea. Other residents joined in. Jonathan and Megan and Tibit come when they can and make us laugh.
Tibit is a 3.5 pound daucsand/poodle mix who is black and curly like a poodle with a little body and tail like a daucsand. She is fun, funny, and cuddly. I am most happy to dog sit. She makes us laugh and she already knows she is loved. If you want to see pictures, you can visit Jonathan’s website at www.apelike.net/3000-mi.
Jack’s sister, Myra, sent the following to me that I think is also worth sharing.
WHAT CANCER CANNOT DO
Cancer cannot cripple love.
Cancer cannot shatter hope.
Cancer cannot corrode faith.
Cancer cannot destroy peace.
Cancer cannot kill friendships.
Cancer cannot suppress memories.
Cancer cannot silence courage.
Cancer cannot invade the soul.
Cancer cannot steal eternal life.
Cancer cannot conquer the spirit.
Thank you to all who call and visit. Knowing so many care so much is very appreciated.
Blessings,
Carolyn
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