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