Friday, December 26, 2014

Merry Christmas

                We are having a lovely, peaceful Christmas. David returned home from MGH on Wednesday, 24 December. His appetite hasn’t returned, but he’s able to eat more than the clear fluids of a few days ago.
               
                We played a rousing game of Triple Threat two days ago, and Pit last night. We’ve had delicious food, so far, including the Hazen traditional lasagna for Christmas Eve.


                We will never know what caused David’s enteritis, inflammation of the gut: specific infections can only be identified by culturing a sample. From a culture we know David didn’t have C-diff (which he had in early May), but no other details.

Saturday, December 20, 2014

Crisis Averted

David’s abdominal pain has lessened, which is a relief to all of us, especially to him. Counting the rows on the table below, I note that we’ve come to MGH for 60% of the days in December.

Below are his lab results. Every time you see the white blood cell count go down, it is because of hydroxyurea. [I’ve described that drug in my December 18th post, “17 Come (Mon)day”.]

I’ve added a column: ‘Absolute Neutrophils’. These are the ‘good’ white blood cells that are mature and can fight infection, so the higher the number, the better his immune system might be. There’s one big caveat: these blood tests cannot measure exactly how many of these neutrophils are functioning properly.

Of course, things may go south before that, but for today, David is alive.

Date of Blood Draw (CBC)
White Blood Cell Count
Percentage Blasts in circulation
Absolute Neutrophils
24-Nov-14
21.94
55.0%
1-Dec-14
90.36
64.5%
2-Dec-14
91.51
76.0%
3-Dec-14
95.27
72.0%
4-Dec-14
76.39
75.0%
5-Dec-14
42.78
72.0%
8-Dec-14
8.20
59.0%
0.55
10-Dec-14
3.84
44.3%
0.13
12-Dec-14
6.19
54.0%
0.25
15-Dec-14
17.88
55.7%
0.79
18-Dec-14
38.56
67.0%
0.39
19-Dec-14
35.24
68.0%
1.40
20-Dec-14
27.57
55.8%
0.96


Looking Better

            David is looking better. He watched some football and is on his computer right now. Always a positive sign.

Star date 201412201500

                   Around 11 a.m., David’s blood pressure was down to 70 over something. His nurse for the day, Meg, was concerned. She gave him a bolus (a single dose, given all at once) of saline by IV and then red blood cells. The low blood pressure was concerning (both Meg, and a nurse practitioner, Colleen, were here together at one point), but not an emergency. By noon it had risen to 87/41 and at 12:37 p.m. it was back in the normal range: 98/53. It’s been stable since then.
Colleen is concerned that his belly pain isn’t lessening, despite two doses of morphine. He’s on broad spectrum antibiotics and has no fever, which are both good things.

            Jim drove a U-Haul truck to the Bishops Storehouse in Worcester early this morning, then came here to MGH. David’s been resting quietly all morning.

Friday, December 19, 2014

Lunder 10 Once Again

            Well, Dr. Fathi suspects an intestinal infection: colitis can be ruled out (sorry, lame joke), might be enteritis. So, even though David has no fever or chills, he’s been admitted back up to Lunder 10. We’ve been here for an hour and I just thought to look out the window. We score big time! The Charles River sparkles below us and through a tall and shorter building I can monitor the Storrow Drive traffic: currently moving slowly in each direction. Last stay we had a boring view of a wall. If I pressed my head against the glass at the far side of the window, I could see the state capitol building. But this view, this view will be spectacular tomorrow, when the sun is up.

David will be starting the prep for an abdominal CT scan soon: 3 doses of oral contrast and contrast by IV as well. He is nauseous, so the prep is not welcome.

            We’ve spent the day at MGH, starting with our semi-weekly 10 a.m. appointment. I knew it would be a long day when Judy, the nurse practitioner, showed up 20 minutes before her appointed rounds. I got a break in the middle of the day: I drove to Waltham to see my therapist of 13 years. Got lost 3 times (must be a bit stressed today), including a time when it took the GPS 5 minutes to “re-route”. By then I had understood and corrected my mistake. As Red Riding Hood says in Into the Woods: “Do not put your faith in a cape and a hood; they will not protect you the way that they should.” I’ll include GPS in that. Next time I’ll review my trusty map. Don’t get me wrong, GPS is amazing. But not foolproof (hmmm, what does that make me?), especially in Greater Boston.


            David has done well: keeping out of the hospital since September 3rd. (No, I didn’t have that memorized: hurray for MS Word search.)

Thursday, December 18, 2014

Dad's Wake

            Shortly after my dad’s death, in response to one grandson’s Facebook post, a second grandson suggested wearing Guayabera shirts to dad’s wake. Dad was famous for his Caribbean four-pocketed shirts. He loved the convenience of having extra pockets and the comfort of the roomy fit and open collar. At first he purchased the traditional style: pastel blue or yellow or white shirts with tiny pleats down the front. I once made him a shirt with a bright tropical print and over the years he ordered many colorful, custom-made shirts from a seamstress he met at a street fair in Frederiksted, St. Croix, U.S. Virgin Islands, where Mom owned two condos. (She bought the first while Dad was scuba diving one morning.)
My brother, Carl, raided Dad’s closet and brought a stack of Guayabera shirts to the dinner at J.J. Bitting Brewing Company. I wore one of Mom’s summery dresses, despite temperatures in the 30s. My sister, Maggie, wore a skirt that matched her husband John’s Guayabera shirt: both were gifts I made several years ago. David discovered his Hawai’ian shirts in the garage; he thought they might be at Fort Hood in Texas.
            Even Dad got into the act, thanks to Carl. He looked relaxed and dashing in his long sleeved four-pocketed shirt. When the priest arrived to say a prayer and a few words, he was a good sport and donned a colorful shirt well. (Don’t tell the bishop of the diocese!)

            Dad looked just like Dad. I kept waiting for his chest to rise. I never notice normal breathing, but its absence was startling and disconcerting. From his face you would think he was just taking a nap. His hands didn’t look quite right: slightly dehydrated and weak, but his salt-and-pepper beard was perfectly trimmed.

            At the funeral Mass on Tuesday, December 9th, we again dressed tropical, brightening up St. Mary’s Church. The cold, wintry rain menaced our intrepid band and at St. Mary’s Cemetery a sudden gust of wind lifted a pole, threatening to drop the tent on us. A muddy backhoe rested next to the open grave and the dislodged headstone; rust-colored mud splatters undid Dad’s careful November cleaning. A Navy bugler played a hauntingly beautiful “Taps”; a Navy honor guard carefully folded the wet flag and presented it to my sister in gratitude for my dad’s service during World War II.

            Then we went to The Barge, a short block down the hill from Dad’s house. The owner, Alex, had set up long tables in the barroom and we ate a few feet from the barstool where he’d sip his beer and catch up on the local gossip.


            We miss you, Dad!

17 Come (Mon)day

Noon

            Ralph Vaughan Williams used “Seventeen Come Sunday” in his Folk Song Suite. I love the tune.

I wish I’d posted a week ago, when David’s WBC was a comforting 6. By Monday, December 15th, it was 17 and today, December 18th, it’s 38. Doubling in three days. Doing the math, unchecked it could be 310 just nine days from now, December 27th. The blast percentage has risen from 55.7% to 67.0%.
And he’s been unable to keep the hydroxyurea down.

            Hydroxyurea (Hydrea is a brand-name) kills blood cells in the bloodstream, but does not attack the source of the leukemia in the bone marrow. It keeps the symptoms of a high white blood cell count at bay, but eventually, unless the decitabine kicks in, the blasts produced in the bone marrow will take over, clogging the capillaries. The lungs and brain are especially susceptible, reducing the oxygen exchange in the lungs and potentially causing bleeding in the brain.
            As Judy Foster, the nurse practitioner, explained, decitabine is a more ‘elegant’ drug than the others he has had, which work by brute force, killing fast-growing cells, such as leukemic white blood blasts, but also red blood cells, causing anemia, and platelets, heightening the risk of uncontrolled bleeding.

            We’re at Cox 1, the MGH outpatient clinic, where David is resting while he receives saline fluid to treat his dehydration. They’ve given him an anti-nausea medication and will try a dose of hydroxyurea in a little while. Unfortunately, there is no IV form of the drug: it has to go through his digestive system.

            Judy offered David the choice of returning to Cox 1 tomorrow or being admitted to the inpatient Lunder 10. For now he’s opted for the outpatient route.

            She’d like to give him a liter of fluid, so we’ll be here until at least 3 p.m. Glad I brought my computer and Kindle. Sorry David doesn’t feel well enough to do anything but rest in a darkened room.

Saturday, December 6, 2014

A Tribute to George G. Hazen

      




           George G. Hazen died on Thursday, 4 December 2014, in Perth Amboy, NJ. He was 91 years old.

            My dad grew up on a wheat farm near Highwood, Montana. He graduated from Fort Benton High School, did his undergraduate studies at Montana State in Bozeman, and in 1950 received a PhD in Chemistry at the University of Michigan. As a chemistry teaching assistant, he met an undergraduate from Nebraska City, Ruth Evelyn Farrell. In 1948, he married Ruth and over the next ten years they had six children. Mom died on 26 August 2013. They had just celebrated their 65th wedding anniversary.
            Dad was a U.S. Navy World War II veteran. He worked as a research chemist for Merck & Co. in Danville, PA and Rahway, NJ for 40 years, before retiring in 1991.

            As my brother, Steve, wrote:
He chose Merck because he wanted to help heal those who are sick.   Among the proudest accomplishments in his professional life was his work to create an affordable manufacturing process for the drug cortisone – a drug that was considered a miracle drug when it was first discovered and is still widely used today.  The first batches of cortisone cost $8,500 for a gram of drug – prohibitively expensive for medical practice in the late 1940s.  The Merck team reduced the price per gram to $30 by 1951 and continued to refine the manufacturing process.  In 1957, he was sent to the Philippines, Australia and Holland to set up processing operations for cortisone in those countries.

International travel is a legacy and a passion that his children and grandchildren continue to enjoy.


            My dad shared many things with me, his deep faith, his love of learning, scuba diving and fine dining, to name a few. I am so grateful that some of us were able to travel to Fort Benton, Montana, for a Hazen-Holmes reunion in July. We drove to the old ranch house, which never had running water, now abandoned and surrounded by wheat fields, and enjoyed the Montanan Big Sky, with the Highwood Mountains in the distance.

            Even in his ninety-second year, Dad kept active: attending daily Mass and swimming at the Perth Amboy YMCA, and in the evening walking down a block to The Barge for a beer and the local gossip.

            I miss you, Dad. Say hi to Mom for me.

42.7? It's All Relative

            On Friday, 5 December, David’s white blood cell count (WBC) was down from 95 to 42.7: a comforting ending of a difficult week.

            On Monday, 1 December, David’s WBC was 90. That means the number of white blood cells, over 65% of them leukemic blasts, had more than quadrupled, from 21.9 to 90, in just a week. The doctor increased his dosage of hydroxyurea from 1 to 2 grams. On Tuesday, the WBC was 91, so the hydroxyurea was increased to 4 grams. Wednesday the WBC was 95, and the hydroxyurea was increased to 6 grams.
            Dr. Gaby Hobbes, filling in for his regular oncologist, Dr. Fathi, initiated a very serious conversation with us on Tuesday. She told us that a WBC of 90 was really high. [When David got very sick in Korea, last March, his WBC was 147. Remember, 4.5 to 11 is the target range.] She explained to us that having a WBC of 90, of which about 76% are leukemic blasts, can cause sudden, serious complications. The leukemic blasts are “sticky” and can clog capillaries in the organs, including the lungs and brain.
            We started discussing hospice, with the clear understanding from Dr. Hobbes that if hospice care is started, David would still be treated with chemotherapy, as long as it was effective. There’s absolutely no expectation that the leukemia can be stopped; we hope that the chemo can slow the progress of the disease.
            And the high dose hydroxyurea did slow the leukemia this week. On Thursday, the WBC was down a bit, to 76, and Friday it was 42.7. That’s nearly three times the October 26th count, but it’s all relative, isn’t it?

            David continues to look good and is not in pain. His beard is looking absolutely presentable, though not very long for a man who hasn’t shaved since March.
Friday was the fifth and final day of decitabine. It takes about an hour to administer via IV. Now we hope for the WBC to decrease. Decitabine is much gentler than the previous chemotherapies David has had. The regimen is 5 days of decitabine every four weeks or so. We won’t know for a few cycles if it is effective. If the WBC starts rising quickly again, we’ll know it’s not working.


            David, Jim, and I attended the Cambridge Stake’s annual Messiah Sing at the Belmont Chapel last night. The soloists and orchestra was excellent and the chapel was full of enthusiastic singers. It’s a wonderful way to start the Christmas season.

Monday, December 1, 2014

Decitabine

            I’m sitting in a room at Cox 1, the leukemia outpatient clinic at MGH, which we inhabit for two or more hours twice a week these days. David is napping while he receives his first infusion of yet another chemotherapy drug: DECITABINE. It is mainly used for myelodysplastic syndrome, a blood disorder in which the bone marrow doesn’t produce healthy blood cells of any type: red, white, or platelets.
Decitabine is also used for AML (acute myeloid leukemia), in which the bone marrow produces too many immature white blood cells (blasts), which proliferate quickly and crowd out the healthy white blood cells (increasing the risk of infection), red blood cells (causing anemia),  and platelets, (increasing the risk of uncontrolled bleeding).

            David will return to MGH every morning for the next 4 days (5 days total this week) for an infusion of decitabine, then take 3-4 weeks off while his healthy blood cell counts recover. As Dr. Gaby, who is covering for Dr. Amir Fathi this week, explained, decitabine is a slow acting chemotherapy. We won’t know for several cycles (5 days of infusion, 3-4 weeks waiting for the blood counts to recover) whether it is working well. If it is not working, we’ll know quite quickly: the blasts will continue to increase rapidly.

            David’s white blood cell count was high today: 90 (thousand), increased from the November 24th reading of 24 (target range is 4.5 to 11). He will continue to take hydroxyurea for a few days to lower his white blood cell count and give the decitabine some time to start working.

            So, as has been the case since the beginning, no news will be good news. The overall prognosis is still very poor: we are not expecting a cure at this point; we do hope for some time where David continues to feel fairly well.

Twice a week they do a complete blood count (CBC) and measure the number of white blood cells and what percentage of those are blasts (leukemic cells). Less frequently they aspirate bone marrow from David’s hip and measure the percentage of blasts in the marrow, where all blood cells originate. None of the news is good.
            The bone marrow biopsy on November 20th showed a large increase in the percentage of blasts in the bone marrow, where all blood cells originate: 83% blasts, up from 14% blasts on October 6th.


Date of Blood Draw (CBC)
White Blood Cell Count
Percentage Blasts in circulation
Date of
Bone Marrow Biopsy
Percentage Blasts in Marrow
6-Oct-14
2.2
2.60%
6-Oct-14
14%
10-Oct-14
2.7
8%
15-Oct-14
3
9.20%
23-Oct-14
15.7
47%
24-Oct-14
14.9
53%
26-Oct-14
15.5
65%
30-Oct-14
8.81
55%
2-Nov-14
6.68
33%
5-Nov-14
4.8
39%
10-Nov-14
7.29
29%
13-Nov-14
8.73
46%
16-Nov-14
10.04
29%
20-Nov-14
12.29
53%
20-Nov-14
83%
24-Nov-14
21.94
55%
1-Dec-14
90.36
65%



            All travel went well. R’el and David drove 1000 miles to spend time with Matt (Chicago), with a 130 mile side trip to see Annie (U of Wisconsin in Madison) and bring her down to Chicago. They had Thanksgiving dinner with Jim’s mom: Meemaw, a.k.a. Charlotte. Matt moved to the neighborhood of Bryn Mawr on the north side of Chicago, near the lake.
Jim and I flew to Salt Lake City to spend Thanksgiving with Jim’s brother, Jeff. We took a side trip to Shelley, Idaho, where we held a planning meeting for the Alan and Mary Cannon Reunion, 24-26 July 2015. (Mark your calendars!). We stayed two nights at Charlotte’s house, which Alan and Mary built back in 1965, when Jim was ten. Jim had never been there by himself; his whole family used to visit from Chicago every summer. It was a wonderfully relaxing getaway. The house is set right on the Snake River, visible through the floor to ceiling windows. Back in Salt Lake, I took a 7 ½ mile walk, covering all the side streets between 900 East and 1300 East, from 45000 South to 39000 South. The weather in Salt Lake was warm and lovely. We all missed the snow in Lexington.


            Last night was our first Advent Sunday. Advent is celebrated during the four Sundays before Christmas. We have hosted Advent evenings every year since 1998 (17 years!) This year we’ve invited 22 friends, including 9 children and an infant. We had Chinese sundaes (a.k.a. Hawai’ian haystacks), read short scripture passages about our Savior, Jesus Christ, and sang Advent and Christmas carols. Saturday afternoon, Autumn helped me set the tables and install the electric window candles throughout the house. David is feeling well, and is not neutropenic (low white blood cell count, which can lead to infection and therefore requires special precautions). He was a kid magnet, helping the youngest two girls “read” their scripture verses. It felt so warm and comfortable to have a house full of children, with David able to eat, read, and sing with us all.

Tuesday, November 25, 2014

Jim’s Sacrament Meeting Talk—16 November 2014

                                                                            Family Letter 72
                                                                            Redemption
                                                                            November 20, 2014

Dear R’el, Peter and Xiomara, Matt, David, Annie, and Sam,
     
      As I start this letter, on November 18, Mary and David and I are in deluxe quarters at the Sea Crest Beach Hotel in Falmouth, Massachusetts. I am seated in our living room. Out the window to my right I see the incoming surf of Buzzard’s Bay in brilliant sunshine. The light blue sky is streaked with a few clouds, remnants of yesterday’s rain. The deep green-blue water contrasts with the white foam of the breakers. The clean white sand comes within twelve feet of our room. We have our own door that opens onto the boardwalk and the sand. We’re on an excursion that combines my work on Nantucket and in Falmouth with some sightseeing, rest, companionship, and delicious meals.
      Sunday, David, Mary, and I (in that order) spoke in sacrament meeting. Three of Mary’s DBSA friends came, and also two of my Vistage associates. Michelle Romano, Marilyn McIntosh, Eric and Becky Rebentisch, and Laurie Low came from other wards. Mary recorded the talks. I’ll refer now to the notes I used in order to say to you in this letter what I said in the talk.

      It was very moving to hear David speak, and Mary also. From the time I got David’s phone call from Korea on March 19, the experience of David’s leukemia has brought the three of us together strongly. Sunday was a wonderful day for me. Although David’s medical outlook is not at all good, he is stronger and feeling better and looking better now than any time since April. It added to the peak moment to have you, R’el, and you, Peter and Xiomara (and Andrew) at the meeting. I felt blessed and fortunate.
Being in a sacrament meeting with the Latter-day Saints can be an amazing experience. Sacrament meetings have molded and formed me since I was a young child. I’ve often heard people express themselves in very intimate, personal ways, sometimes more so in a sacrament meeting than even in family settings where you might expect greater intimacy than in a big meeting. I think it is a great gift we enjoy as a people that when we stand at the pulpit, we are moved to speak honestly and from the heart and sometimes to be very unguarded. Being myself a man who tends to be cautious and guarded, I really appreciate this gift. On Sunday my desire was to speak from the heart, as David and Mary certainly did.

      What is happening to David is certainly a tragedy for him and for all who love him. The last time I saw him completely well was just after Christmas. Mary and I had gathered with my mom and most of our children at my sister’s house in Charleston, South Carolina. From there, we took David to the airport, for him to return to Fort Hood, Texas. He was heavily weighed down with a couple of Army duffel bags. He made a strong impression on me, bent over a bit with the weight of his bags, with his head and neck notably erect and thrust forward as he strode very purposefully into the terminal.
      Less than three months later, we saw him next. This was also at an airline terminal, at Dulles, where he arrived from Korea. We took him from there straight to Walter Reed in Bethesda. He was there for two solid months. Those were very tough months, especially the second month. David showed tremendous patience, willingness, quiet strength, and occasional good humor during this time. At one point, the first week of May, he could not eat, could not sit up without help, could not speak, could not see well enough to read, and had a life-threatening intestinal infection. During those two months, Mary was with David nearly all the time, often through the night. David bore all this with patience and humility. He’s so much better now that the memory of early May feels unreal.
      During that time, we all began to realize, not just intellectually, that David’s life really was in danger and he might die soon. Since then, he has strengthened remarkably but the medical estimate of his chances has actually gotten worse. Unless something changes, his doctor expects David will not survive. Intellectually, I’ve always known that death is part of life. Birth brings us from our spirit existence into this, our mortal existence and death takes us back. Death is also a birth, you could say, into that next phase of our lives. This is actually starting to sink in for me, and to become real. I realize I will die; we all will die. I think of the Doc Martin television series, a great favorite of mine. In one episode, a bunch of panicky teen-age girls come running into the doctor’s office. One of their friends is bleeding because she had tried to cut a mole off her belly with a knife. The girls breathlessly ask, “Is she going to die, is she going to die?” Doc Martin gruffly says, “Yup….But not today.”
      So here we are. Am I going to die? Yup. Is David going to die? Yup. But not today. We take one day at a time.

      I’m open to a miracle. I can imagine David going to my funeral in a few years instead of my going to his. I can imagine David’s wonderful doctor saying, “I just can’t explain what has happened. David is cancer-free.” It would be great for David to live, to pursue his interest in further medical education (the last nine months have added a lot to his army medic training), to marry, and to have children. This would be a story we would treasure forever. I pray for this. I say to Heavenly Father, “Please heal David. Please intervene. Please let him live.” But I’ve come to realize that this is not the only miracle to look for. In fact, if the miracle we seek is for sickness and death never to come, we are seeking the wrong miracle.
      God’s plan is to use birth, life, free agency and choice, experience, opposition, sickness, and death to teach us the gospel, to teach us what we need to know to progress eternally. If we could learn all this by detached study, we wouldn’t need to be here. Some of what we need to learn we can learn only by experience, including what I’ve learned in the past few months. And, I’m sure I have much more to learn, still.
      The nature of God is that He can make everything redemptive, even tragedy. I know this now in a way I did not know it before. This is the big miracle. I saw this redemption in Mat Burnett’s radiant happy look in the weeks before he died. I’ve seen it in Deb Butler’s transformation during Marc’s illness and after his death.

      I’ve found that having a disaster strike is a great way to see the Church in action and to appreciate my membership in this great society. When we were first in Bethesda, we looked up David’s ward there. Although he never set foot in their church building, they definitely made him a member of that ward. We talked with Bishop Young in our first days. When we arrived at sacrament meeting the first Sunday, we were late. I caught Bishop Young’s eye as we came up the aisle, and I could tell he knew who we were. It felt good to be known and to be embraced by him and that ward. He sent home teachers to take the sacrament to David and many new friends stopped by David’s hospital room.
      Bishop Kenny Bement came to see me on May 5, a very low point. I was alone here; Mary and David were in Bethesda. Bishop Bement brought me dinner and we talked for an hour or two. It was just what I needed.
      I’ve thought about why I continue to be an active member of this Church. As it happens, my son’s leukemia has increased my sense of God’s role in my life and my commitment to being part of this Church. But I know that sometimes, seemingly senseless tragedy and suffering can destroy faith and commitment. I’ve thought about other things that can seem to repel us at times. For instance, the way we dress for church meetings. On the one hand, it shows that we think church is special. On the other hand, this practice, which has no deep doctrinal foundation, could make someone who dresses differently feel unwelcome. In general, the standards of behavior we try to live (such as treating sex as sacred and private and reserving it for marriage between a man and a woman, not using tobacco or alcohol, and not doing recreation or work on Sundays) can all bind us to God and to each other in a wonderful way, but can also be the off-putting obstacle that makes Church members seem arrogant, prideful, peculiar, or joyless. This can make the Church not feel like a home at times.
      Behind and within all this, there is a central core of the Church and the gospel. This core is radiant, intense, unchanging, and it’s universally applicable to every human being. If we make our way past the obstacles, if we see them as doorways instead, and reach this inner core in even a small way, it is wonderful. I feel I touch this core when I consider any of the following:
      The Mormon pioneers and what they did for the conviction they had that Joseph Smith was a prophet of God and the truth was restored.
      The bonds of husband and wife, which can be forever.
      The Savior, Jesus Christ and what he taught and did, and the power he has to redeem us.
      The knowledge that life has meaning and purpose and that God our Heavenly Father loves us more than we can comprehend, and knows the end from the beginning.
      The covenants we make at baptism and in the temple endowment.

      Creation, choice, the fall, redemption, and covenant making are the center of the temple endowment. Partly, the endowment is a story of what happened in the past to other people. But if it were only that, it would not be at the core of our worship. What makes it the core of our worship is that in our own lives we ourselves live the drama of creating, of choosing, of falling, of being redeemed, and of making covenants. It’s not a once-for-all time drama, it’s continuous. Each week, during the sacrament, we find that the impossibility of Adam’s and Eve’s situation is ours, too. We promise to obey, we fall short, we need redemption. There is something unresolvable about this situation, the way the nature of light is unresolvable between wave and particle. This underlying unresolved tension in our relationship with God is like our being a planet and He being a sun. Like a planet’s, our forward momentum is always taking us away in a straight line, but our path nonetheless is constantly bent into a curved path around our Father and we stay in orbit. We are always fighting to go in our own direction and also always being drawn to Him.
      My own orbit is wobbly at times, but I feel God’s attractive power keeping me from flying off into the void that my own direction would take me. In the end, his redeeming power can keep even me in orbit. I’m grateful for this.

                                                                                    Love,


                                                                                    JimDad

Monday, November 24, 2014

Mary’s Sacrament Meeting Talk—16 November 2014

            Good afternoon, brothers and sisters. I’d especially like to thank my friends who have come to share this meeting with us.

            I’m the mom of the fine young man who just spoke. David is our fourth child and third son. We’re very grateful for every day that he is with us and in relatively good health.
            Having a child with a life-threatening illness is hard. Really hard. Some moments I double over in nearly unbearable heartache. However, I’ve been on this earth for 58 years and I’ve learned that there are many, many hard things in life. I’m sure that right here in this room are some who have borne terrible, private griefs and intense pains. Sometimes it just hurts.

In 1839, Joseph Smith was jailed in Liberty, Missouri, in filthy conditions and cut off from family and friends. The Lord told him:

The Son of Man hath descended below them all”.(Doctrine and Covenants 122:8)

In other words, Jesus Christ, our Savior, has experienced depths of pains, sorrows, and afflictions that no mortal human could survive. In the Book of Mormon, the prophet Alma teaches this about the suffering of the Savior: As we read in Alma 7:

            …he shall go forth, suffering pains and afflictions and temptations of every kind
… he will take upon him the pains and the sicknesses of his people.
            And he will take upon him death, that he may loose the bands of death which bind his people;

            I don’t know why a particular person suffers a particular thing. But I trust, deeply trust, that there is meaning in the suffering and that God is keenly aware of us and wants the best for us.

            On Wednesday it will be exactly 8 months since David called us from Korea to tell us he was in the hospital with leukemia. At the end of May, David was transferred to Mass General: a short 13 miles from our house instead of 435 miles. Several treatments later, the leukemia has relapsed. We pray every day for complete healing, but we also have to prepare for a good bye.

I’ve had the deep spiritual confirmation of the power of prayer: prayers offered for us by our own family of children, parents, brothers, and sisters, and friends from all over. I know that those prayers sustained me during the bleakest times at Walter Reed and again when we discovered in August that the leukemia had relapsed.

            Hopefully, I’ve also learned some things. One is empathy for others.
When my mom died last year, one month shy of her 90th birthday, with my sorrow I came to understand some of what others had experienced with the death of a parent. I just hadn’t “gotten it” before.
I recently studied The Book of Job in The Bible as part of our Sunday School class. I first read the whole Bible when I was about 13, and have read Job several times since. I never understood why it was so long: 42 chapters. ‘Just get on with it, Job! You say, “the Lord gave and the Lord taketh away, blessed be the name of the Lord”, so now, move on, just deal!’ However, this summer, as I read Job’s laments, it brought me to tears, many times. Here is a soul-wrenching expression of human sorrow at the edge of capacity. Job believed in God, Job accepted his calamities, but Job hurt, deeply, gnawingly, inconsolably. And that’s okay.

On April 6th of this year, I was able to watch the Sunday morning General Conference, broadcast from Salt Lake City, at the theater of the Visitors Center on the Washington Temple grounds. It had been a long 18 days since David had called us from Korea. Two talks spoke directly to me: “Grateful in Every Circumstance” by President Dieter Uchtdorf, and “Bear Up Their Burdens With Ease” by Elder David Bednar. I wept in the darkened theater, touched by the comfort and wisdom these men conveyed.

President Uchtdorf taught that although we should “count our many blessings” as the hymn suggests, gratitude is deeper than that. Gratitude is recognizing God’s hand in our lives, whatever our circumstances.
Elder Bednar told a true story of a friend who went to cut firewood in the mountains. When a snow storm started, he foolishly kept going, trusting in his new 4 wheel drive truck. However, he got stuck, really stuck, and was in a dangerous situation. Since he couldn’t drive out, he decided to cut firewood to pass the time. With his truck bed full of wood, he tried one more time. This time he got traction and was able to return home safely. And how could he get out? As Elder Bednar says, “It was the load…”
He says: Sometimes we mistakenly may believe that happiness is the absence of a load. But bearing a load is a necessary and essential part of the plan of happiness.

I want to say, that if I am weathering this difficult time with any grace, it is largely due to my mom. When I was almost 3 years old, my younger brother, Michael was born. He took a very long time to learn to crawl, eat by himself, walk, and talk. Mentally, he never advanced beyond the capacity of a 2 or 3 year old. It was a great sorrow to my parents that their beautiful, brown-eyed boy was so handicapped. And he was a beautiful child!
      When I was a teenager, my mom told me, “We’ve prayed for Michael to be normal. We’ve prayed. But sometimes the answer is no.”

      I don’t know what the answer in David’s life will be. He may not live to be 28, he may live to be 90. But I am grateful for the great peace I have felt from time to time during these 8 months. I know God lives and I know he knows each of us, by name. He knows all the details of our lives.
I don’t know why hard things happen in life, but I do know that Jesus Christ, our Savior, suffered all things to rescue us from eternal death. That may not make the current pain less, but it is a promise I cling to.

      And he will take upon him death, that he may loose the bands of death that bind his people.

      May we each feel the deep and abiding love that Heavenly Father has for us and may we find comfort in all our times.

      In the name of Jesus Christ, Amen.


No More Cabozantinib

            Jim and I flew to Salt Lake City early Friday. We attended the annual Johnston extended family pre-Thanksgiving dinner for the first time. Sunday night we drove to Shelley, Idaho, where we met with the Alan M. Cannon Reunion 2015 committee. Today we’re enjoying a very quiet day in Charlotte’s house on the Snake River. Dusk has fallen and the deciduous trees are bare. There’s a smattering of snow on the grass.
            David and R’el are on the New York State Thruway, headed for Chicago to spend Thanksgiving with Matt and Annie, and have Thanksgiving dinner with Charlotte at her 11th floor Hyde Park apartment. (Hyde Park is the neighborhood of the University of Chicago, on the south side of the city. Jim grew up around the corner from her current home.)
The bone marrow biopsy on Thursday revealed an increase in blasts from 28 days ago: the cabozantinib clinical trial didn’t work. (Dang! Just when I’d learned to spell it confidently.) David will start a 5-day round of chemotherapy on Monday. It can be administered outpatient; we’ll learn more on Monday.

David, Jim, and I gave talks in the Arlington Ward sacrament meeting a week ago. The topics were family and spirituality. I’ll post mine today and Jim’s tomorrow.

Saturday, November 15, 2014

More Quiet Days

            David continues to be in good spirits. Xiomara and Andrew arrived yesterday from the Bronx via Megabus; Peter and R’el will drive here this evening. Tomorrow, David, Jim, and I will give talks at our Arlington ward. You’re all invited: sacrament meeting starts at 2:00 p.m. This is a serious invitation: Arlington Ward meets at 2:00 p.m. at The Church of Jesus Christ of Latter-day Saints, 15 Ledgewood Place, Belmont, MA, just down the hill from the Boston Temple.
            David continues to go to Mass General for bloodwork twice a week. This Thursday, November 20, will be the 28th day of his Phase 1 cabozantinib drug trial. He’ll have a bone marrow biopsy to assess the efficacy of the treatment so far. The semiweekly blood tests show what percentage of his white blood cells are leukemic blasts, but with the bone marrow biopsy they can actually analyze and assess the bone marrow, where all the blood cells develop.

            Here’s the chart of his white blood cell count. Although a normal WBC is 10, the important information is whether the white blood cells are normal, mature cells or immature (leukemic or cancerous) blasts. So, we want the white blood cell count to be between 4 and 10, but only if most of those cells are normal, with a low percentage of blasts. It’s still too early to know what effect, if any, the cabozantinib is having: sometimes with these experimental drugs the blast percentage increases initially, then decreases. We’ll have to just wait and see.

Date
White Blood Cell Count
Percentage Blasts
6-Oct-14
2.2
2.60%
10-Oct-14
2.7
8%
15-Oct-14
3
9.20%
23-Oct-14
15.7
47%
24-Oct-14
14.9
53%
26-Oct-14
15.5
65%
30-Oct-14
8.81
55%
2-Nov-14
6.68
33%
5-Nov-14
4.8
39%
10-Nov-14
7.29
29%
13-Nov-14
8.73
46%

            David asked Dr. Fathi this week whether his prognosis has changed. Dr. Fathi said that the prognosis hasn’t changed: David may feel good as long as the treatment can keep the blast count down. However, there is no expectation of a cure at this point.


            I do believe in miracles, but as a friend wisely remarked, “To be a miracle, it has to be rare, right?” We pray for that rare outcome and give thanks for each day of mortal life.