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.

Friday, November 7, 2014

Phase One Clinical Trial: Cabozantinib

             On Thursday, October 23, David started a Phase One clinical trial of cabozantinib. He takes the pill at home each morning and goes to MGH twice a week to check his blood counts.
            For the first two weeks, ending two days ago, he was allowed to take hydroxyurea to lower the white blood count while we wait to see if the cabozantinib will attack the blasts.

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%


            The lower blast percentage is good news, however, it is too early to know whether the cabozantinib is having any effect.

            Last Sunday, Jim, David, and I drove to the Bronx to visit Peter, Xiomara, and Andrew. Monday evening we (sans Andrew) attended R’els first concert with the Oratorio Society of New York. They performed Haydn’s The Creation in Carnegie Hall. It was superb.