Letter from Bill Grieco

Carolyn—

You may recall that I was one of Jack’s graduate students in the mid- to late-90s. I just heard about Jack’s health situation from an MIT faculty member yesterday. Please know that all of you are in our thoughts. If there is anything that I can do, please let me know.

You should also know (and I hope that he does as well!) that Jack had a profound impact on me as a student and as an engineer. I can’t count the times when I’ve asked myself the question “What would JBH do in this situation?” to help guide me in facing technical, professional, and ethical issues. He has always been an excellent role model for his students and colleagues. As Jack commented in an email after a phone chat that he and I had in late June, we easily fell back into our old habits of long conversations and that it seemed like old times. My grad school memories will always be of my late day (and often early night…to the chagrin of my wife, Tonya) discussions with Jack when it seemed like we were trying to solve all the world’s problems. Really good times and great memories…

Know that we are with you.

Take care,
Bill

Update

There are so many firsts in our lives right now that I have quit counting and just keep saying “it’s a first”.

Thankfully, we found a condo for Megan and Jonathan. Jonathan decided when we saw 5 Evergreen St. in Somerville that this place was going to be the gold standard by which to measure all other places. It was fairly priced; we made an offer, a counter offer came back, we came back and met them with a slightly increased offer that was accepted. It is a beautiful renovated town home in a 1900’s building with 2 other condos. They have a full basement that is immaculate with new hot water heater; furnace, etc with large windows that open. The first floor has a lovely living room; a large new kitchen and dining area and ½ bath with a new washer and dryer in the bathroom. The second floor has 3 bedrooms and 1 full bath. The third floor is a walkup attic that has huge refinishing potential. Jonathan can already see a work space for himself and Megan on that level. The ceilings are high; moldings intact; beautiful oak, newly finished hardwood floors; bay windows in dining room and one bedroom; and a beautiful staircase to the second floor. The living space is about 1600 sq. ft that does not include the basement and attic. For those of you in Boston, it looks like a townhouse on Beacon Hill in the inside layout. Their first choice was Somerville. It is in the Winter Hill area between Broadway and Highland Ave, near the Somerville Hospital. We are most thankful for the Lord opening this door for them and us. They had been thinking that it would be Thanksgiving before they would have a place to live.

Jack is experiencing the side effects of treatment. He has deteriorated in terms of his ability to be as independent as he would like. He is less stable on his feet. The Drs. had warned us that this would likely occur. I think it is discouraging to Jack. He had a very busy day today after his treatment. His physical therapist came as well as an occupational therapist for an evaluation. We also began have a person here at the house for a few hours to make sure he doesn’t fall while I am at work. We are so pleased with this lady. Her name is Simone. Jack told her he would let her know if he needed her. He will likely adjust to having someone nearby in spite of the fact that he would prefer to be alone. After his Saturday fall, I don’t trust him alone at this time. He is satisfied with my need in this regard. He also had our wonderful Tom Chacko come to the house for his weekly neuro-muscular massage.

By God’s grace we have come safe thus far. Jonathan’s visit was too short and the end of October is so far away it seems when he and Megan arrive in Boston, God willing. We have so much abundance in our lives that there is not enough time in the day to appreciate it all.

Jack’s 70th birthday is October 16. He will be 70. If any of you would like to send him a birthday card, I am sure he would enjoy it. I had hoped to celebrate this milestone in a different kind of way but instead I am thankful that we can have another birthday, God willing. Our lives are in His hands always.

Update

We have now completed the first week (Tues-Friday) of the chemo and radiation therapy. I am most thankful to report that we have had a huge prayer answered. Jack has shown no signs of nausea with either treatment. He did not even take his anti-nausea pill on Friday or Saturday. He takes his chemo everyday (7 days/week) and radiation on Monday-Friday.

The Dr. predicted that the first week or two that Jack’s symptoms would likely get worse due to the swelling in the brain from the radiation. I would say that his walk has become more difficult the last couple of days. He actually walked on a non-paved path today and tripped and fell. He got some scratches and called Courtenay to come get him. This event is another first. Jack is so determined mentally but has not adjusted to his new body that doesn’t work so well. He does continue to be in good spirits but seems quieter than usual. Most of you know that Jack only speaks when he has something important to say. You can imagine how “quiet” must be! Thankfully, he still has no pain. I pray that he will not.

Jonathan arrived safely this morning to spend the weekend with us. A friend of mine who is in real estate picked us up and showed us several properties to buy. There are some very hopeful prospects that are close to Boston and are reasonably priced. Please pray that housing and jobs would be easy for Jonathan and Megan. Jonathan has had some good job opportunities already. I am sure Megan will also when she begins to look. They are busily packing, selling what they do not want to bring with them and trying to mentally make this transition.

Please pray that Megan will be blessed with peace as she experiences the pain of leaving all that she has ever known. I made this kind of transition in 1969. It is not easy. I must admit that my move to New England under the love and care of Jack gave me an opportunity to explore, develop, and mature in ways that I would never imagined if I had never left the South. The Lord certainly provides in so many ways even when we are unaware. It brings to mind the verse from Psalm 117:2 “For His merciful kindness is great toward us; and the truth of the Lord endures forever. Praise you the Lord.”

Jack prayed this evening before dinner that the Lord would prepare our hearts and minds for whatever that He has in store for us. He also prayed that God’s grace would be sufficient for these things as He has promised and that we would experience the peace that passes all understanding.

This experience has its joys, pain, and amazing love. We feel so embraced by the love and care and compassion shown to us by so many. I feel that I will never be able to say thank you enough for the calls, emails, gifts, flowers, cards, meals (especially from Wings at Park St.), genuine care, and legions of prayers being said for us. Yesterday, we received a beautiful card from a Bible study at Cape Cod. We did not know a single person that signed that card. We would like to embrace each one of you. The majesty of this outpouring of the kindness and love is bringing us much joy and awe. Thank you from the bottom of our hearts. May the Lord bless each of you abundantly.

Carolyn

Letter from Carolin Hahn

The following letter and photo came all the way Munich from the girlfriend of our good friend Ingo Wersborg, Caroline Hahn.

••••

Dear Carolyn,

Ingo sent me the link to your blog last week and ever since that I've been following very compassionately what is going on in your lives. Thank you so much for allowing us all to take part and to be so close to you in these difficult times. I am writing to tell you and Jack that you are always on my mind and that I would do anything to make things go easier for you.

Tomorrow I'll be taking my hopefully last written exam and if that works out (please keep your fingers crossed and wish me the best of luck - I'm so nervous), I can start my diploma thesis at the beginning of 2008... I'll try and see if I can find a research group at either Harvard or MIT for my thesis, so that I can come by from time to time and support you with some real hugs. It would mean a lot to me to be there for you.

I've a photo attached from that wonderful evening we spent with you more than to years ago shortly after we'd first met. It still makes me smile to remember how you and Ingo were in the kitchen while Jack and I sat on the porch, talking about carbon nanotubes and laser cooling. Courtenay tried to jump in but finally gave up an returned to you: "They're talking about science."

Please give my best regards to Jack, Courtenay, Jonathan and Megan.
I really hope to see you again soon and wish you all the best and all the strength you need for the time being.

Love,

Carolin

Update

Our weekend was cool and it's definitely early Fall in New England. Keith and Paula, Jack’s brother and sister-in-law were here from Tennessee. We thoroughly enjoyed their visit. Jack had Keith out pruning a wisteria and assorted other tasks he normally does. I had Paula helping me keep up with laundry, paperwork (volumes of the stuff), and laughing and crying our way through a warm and wonderful weekend.

I received a call from MGH (MA General Hospital) on Sunday afternoon to let me know that we should not come in on Monday. The radiation machine needed a part that was being flown in from CA. Tuesday would be the start date. The woman that called was Linda Mario, manager of “the machine”. I told her about the Friday disaster. She assured me with her in charge of his treatments things would go VERY smoothly. She said when you arrive on Tuesday, have me paged (believe me, I did).

On Saturday, I called a neurosurgeon that I have known for several years that lives in Winchester. His name is Rees Cosgrove. Dr. Cosgrove used to be at MGH and is now chairman of neurosurgery at Lahey Clinic, a well known and excellent private health care facility in the next town, Burlington. They have a similar model to Mayo Clinic. When I told Dr. Cosgrove of our MGH experience, he was horrified. He told me to call his nurse and he would see us on Wednesday. We have our appointment at 5 PM.

Dr. Cosgrove has a very warm, caring manner about himself, which has been missing at MGH for the most part. He wanted me to get Jack’s MRI and CT scans. He told me to get the receptionist to help me with this task when we went for education. He also said Jack should begin the treatment at MGH (radiation and first round of chemo) and then transfer to him if we choose. We don’t want to interrupt treatment now. By the way, when I called his nurse, she said, I have been waiting for your call. You will need to call registration – I did – she said I have been waiting for your call. She said I will need to call to confirm the appointment – I did – I have been waiting for your call. I almost dropped the phone each time.

On Monday, we went to the oncology center at MGH to receive the education on the chemo we needed. When we checked in, I asked the receptionist about getting Jack’s MRI, CT records. She didn’t know how to do this request but told me to ask the nurse’s assistant (you know what is coming at this point). In the interim, the lab tech calls back for his blood draw. She puts on latex gloves. Jack has latex sensitivity. There was a big sign on his hospital room when he was hospitalized. I tell this woman about his sensitivity, she changes gloves. I go to the desk and tell them they need to add this to his record. The woman says, it is there, and it was in large capital letters at the top of the record. I keep forgetting people don’t know how to read anymore.

Moving along, the nurse’s assistant comes to get us to transfer us to an exam room. I asked him about the scans and the need of copies. He has no idea but I should ask the nurse. The nurse comes in – she is the research nurse. Jack had agreed to participate in demographic and biomarker studies. Since it had been more than 2 weeks since we signed the last set, we had to sign everything again. Also, we would need to come in by 7:30 AM on Tuesday for a blood draw for the biomarker study. I said he just had his blood drawn. Oh, she said, they weren’t the correct test tubes for this study. I asked, couldn’t he do it today? The paperwork could never get processed that quickly (this one I believed). I then asked her about the copies of scans. She didn’t know how to do that but we could ask the nurse who would be educating us on the chemo. Her name is Michele.

In the interim, Dr. Plotkin and Nurse Michele came. I voiced my concerns about how disorganized and disconcerting everything has been. I suggested that someone might produce a page of what to expect from this ordeal in terms of treatment, who does what, when, and where. Dr. Plotkin said that I should send a letter to their executive director with that suggestion. I probably will. Oh later, we were informed that Jack could indeed have his blood drawn now for the study – a small miracle for which I was thankful.

During the education on the chemo that we now know we take each day, Michele informed us about how important it is that we see her after the 3rd week of treatment. We needed to schedule it before we left. The education was well done, except for the time she told us to take the medication (2 hours prior to the radiation). We were moved to a cubicle with another person to schedule the 3 week out appointment. The woman says, Michele is on vacation that week. I asked, what about the Friday before? Oh, neither nurse is here that day. Surprise, surprise!!! Michele comes by to see if we are getting scheduled; we inform her she is on vacation; oh, I forgot!!!! So, 4.5 weeks after treatment, we have our appointment.

I did ask Michele about the scans. She told us we needed to go to a sub-basement in the main building to order these. MGH is a huge campus. The good news is that Jack and I like to walk so we got some walking in. We were told it would take 3-4 days to retrieve this info. We got to the sub-basement and met this fabulous lady who had a million dollar smile, a wonderful sense of humor, and loved her job. She said it would be 1-2 days, but she would see what she could do. She was most pleasant, probably underpaid but sees her job as a ministry. She loved quoting scripture. How the Lord provides in the most amazing places. We are so blessed with His presence. This lady calls 3 hours later to inform us it is in the mail. I told her if I had a million dollars, I would give it to her. I told her she was the sunshine in our day.

Update

Today we declared World War III on the tumor (now known as the “t”). We arrived at MGH at 9 AM. We had dutifully taken the anti-nausea drug at 7:00 AM following by the first dose of Temodar (chemo) at 7:30 AM like we had been instructed to do.

I did have Linda Mario paged. She came out. She asked if we had gotten the temodar (forgot to mention that MGH did get it in on Monday – couriered to them, no less - and I went into MGH and picked it up in the afternoon). She asked when Jack took it, I told her. She said oh, this is time sensitive and he should have taken it at 8:45 AM. Optimal effects are within the hour of radiation we are now told. I honestly believe her. She assured us that we would have no more problems now that we are under her care. I feel confident she is right. I was able to go with Jack and watch the buckling down. He is asking about the machine and how it works. The technicians tell him it is a proton machine but don’t know much else. I let them know that he is an engineer and has a very inquisitive mind.

The great news is that Jack felt no nausea from the drugs or treatments. We were told that only 11% of patients experience nausea. Generally, there can be some fatigue as treatment progresses. We were most thankful for the little gifts. Jack continues to walk and do strength exercises. His left side is somewhat less functional but that is likely from reducing the steroids which we have now increased. His spirits are strong, his smile is dynamic, and his trust in His Lord is unwavering. I am so thankful that our hope is not of things of this world but in wonderful counselor, prince of peace, the Lord God Almighty.

We are so grateful for the multitude of emails, cards, letters, books, food, hugs, and truly comfort and care during this journey. We feel totally embraced by the love that all of you have shown. If any of us wishes for change in the world, let it begin with each of us as we pour out the balm of love for each other and those around us.

I will update again over the weekend. Jonathan is coming home this weekend. We are hoping to look at some places for them to live. We desire your prayers that the Lord will open this door as He has all of the rest of the doors we are going through these days.

Blessings!
Carolyn

Update from 9/14/07

It was another beautiful day in the neighborhood. We all got up early and prepared for the “dress rehearsal” of R-DAY (radiation day). We arrived at 9:25 AM. We were supposed to be there at 9:30 AM. We check in via a computer and a scanner (just like the grocery checkout). Jack has an official barcode that IDs him.

We were told to take a seat in the waiting room that has many people coming and going with hair; without hair; young; old; male; female; no discrimination of age, gender, or ethnic genetics. It is a real eye-opener. It is a world that exists right off the street with the world passing by. It is a world of hope, frustration, and reality. Thankfully, Jack’s brother and his wife, Keith and Paula, were with us. They arrived yesterday. They live in Cookeville, TN. Our time together was joyful during our waiting period.

After about 1 hour, I went to the receptionist desk. I found out that we would be called in 15 minutes. Another hour passed by, no word from anyone. I went back to the desk and was once again was told we were next. Still nothing happened. Finally, after 2.5 hours, a technician comes out and informs us the machine has been broken since yesterday. They were not sure if we should wait around or come back Monday. The technician began speaking about Jack’s regime of chemo and radiation as the protocol. You have to know that the traditional chemo and radiation is called standard of care and any experimental drugs are referred to as protocol. She also kept referring to the standard chemo along with one of the protocol drugs as both being protocols. I stopped her and explained no one had referred the Temodar (standard treatment) as a protocol. She said it was their protocol. It turns out that her definition of protocol is the process of treatment in general. At this point, I asked to speak to the radiologist, Dr. Shih. We were able to see her in about 30 minutes.

Dr. Shih starts asking if we have the prescription of the chemo. I told her no one told us that we had to deal with getting it. It turns out that MGH (MA General Hospital) has to order it; they are not sure when they will get it; hopefully, early next week. We suddenly need to go back to oncology and meet with a nurse to educate us on this drug. We also begin discussing eating before treatment.

Jack has to take the drug and anti-nausea medication on an empty stomach. He cannot eat until after his radiation. I then say can he eat when he is only doing radiation since he is taking chemotherapy only 5 days/every 28 days. The radiologist then says, oh, he is taking chemo everyday for the first 6 weeks. This news is the first time we have heard this from anyone including reading the literature on the drug. The radiologist now tells us that we cannot begin radiation without the chemo and they are not quiet sure when it will all start. I am astounded at the lack of coordination as well as the time we spent today doing nothing.

The good of this day is that we are going for a second opinion at Lahey Clinic somehow. I know the head of neurosurgery at Lahey Clinic. I met him and his wife several years ago and occasionally encounter them in the grocery, movies, etc. He lives near us. I will be calling him tomorrow.

I know that the Lord works all things for the good of His children who are called according to His purposes. For this comfort, I am most grateful. Today brought me out of my own shock and grief of dealing with a most difficult challenge.

As I mentioned, we have been consulting with a Dr. from Brazil. He was reviewing all of Jack’s medical records. We found out that he believes he can help Jack. All is well that ends well. We still have each other.

Blessings,

Carolyn