Five years ago I published a lengthy diary on the first anniversary of the death of my then-15-year-old nephew. In his honor and memory, I am publishing the same diary, with only a few edits, below the orange fleur-de-kos.
[Original introduction] It is already January 23rd here in France—the [sixth] anniversary of the death of my nephew (whom I will call Matt), a victim of squamous cell cancer at the age of 15. I apologize for the length of this diary, but I want to share some of the "real-time" messages sent during Matt's illness and immediately after his death.
If indeed "the personal is political," there can be nothing more powerful than the untimely death of a loved one to strengthen one's resolve to fight against such wrongheaded political policies as the Bush administration's heartless rules impeding stem cell research, and to work for better health care and compassionate support for all. [2014 addendum: I am grateful for "Obamacare" that opens the doors to treatment for so many people, and for the Obama administration's support of stem cell research and for the progress made in combatting the various forms of this dreadful disease in these intervening years.—The latter "hope and change" that came too late for Matt, but perhaps in time for the many thousands of other people who are fighting the good fight.]
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March 17, 2006 (to my two older daughters in NY and Calif.)
Subject: Sit down—dreadful news
Dear Girls,
Terrible news. Your 14-year-old cousin Matt has an extremely virulent form of cancer that appeared out of the blue. He'd had a lesion on his tongue a few days ago—then all of a sudden his tongue turned black and his lymph nodes swelled enormously. Esophagus seems also involved. He's been in terrible pain and is on morphine (or something more powerful). Your Uncle Art [Matt's dad] has been with him in the hospital for the past three days and nights. The Cancer Board is meeting tomorrow (I think) to consider possible treatments, but I probably don't need to tell you that the prognosis is grim and that palliative care may be the best they can offer.
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March 18 (to my Stateside daughters)
I spoke with [my sister] Aunt Carol (who passed along the diagnosis/prognosis) and then with your Uncle Art early this morning, and here is what is happening with Matt: he has an advanced case of squamous cell cancer. With just chemo and radiation treatment, he has a 10% chance of survival. With surgery followed by chemo and radiation, he has a 50% chance of survival.
He and his parents are opting for surgery, which will be a grueling, 12+ hour operation on Friday, April 1. The doctors will remove as much cancerous tissue as they find. Unfortunately, this very likely means removing at least part of his jaw and a fair portion of his tongue. There are obviously "quality of life" issues here: depending on how much of his tongue needs to be removed: will he be able to swallow, speak, taste anything? (With regard to the latter, taste buds are very sensitive to radiation and stand to be adversely affected in any event.)
Art sounded tired but positive that Matt would survive. I spoke to Matt briefly (he's now at home, on morphine as needed). Britta, they received your card and appreciate it; keep your good thoughts coming.
This really sucks. I will try to stay optimistic, and I am not adverse to a miracle at this point.
*
Britta, you asked, "Do tongues grow back?"
No. A prosthetic tongue can be constructed from tissue from the forearm, and people can be taught to use this to swallow and speak. I imagine the doctors will be as conservative as they can in dealing with Matt's tongue, especially given his young age.
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March 23 [to Matt's dad and family]
I hear you (Art) have pneumonia. Good grief! Take care of yourself. I hope Matt is reasonably comfortable at the moment. I sent him a box of French chocolate truffles that should arrive today (Friday). They are my favorite French candy for two reasons: (1) they are extremely easy to eat (they melt in the mouth in a way that puts M&Ms to shame)—so it's my hope that Matt will be able to eat them; and (2) they are lightly dusted with cocoa powder to remind people about real, dug-from-the-dirt-at-the-base-of-a-tree, truffles. I imagine Matt will be willing to share.
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March 27 [to Mr Mofembot and daughters]
..The doctors have moved up the date of Matt's operation. He got the chocolate truffles I sent, but hasn't been able to eat anything solid for days. I've just called Art, poor Matt is very scared (doesn't want to "turn into a freak"). Keep him in your thoughts today.
*
Matt had appeared as an extra in many films and TV shows. After his operation, which required breaking his lower jaw, he had livid scars on his chin, neck, and shoulders. His friends from school and church rallied around him, and bless them for doing so, despite Matt's greatly altered appearance and the too-vivid reminders of death that he and they had to deal with at such tender ages.
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March 31 (to an English friend I'd met in Grenoble)
My youngest brother's 14-year-old son Matt underwent surgery this week for a very aggressive squamous cell cancer in his mouth. Four weeks ago no one had a clue that anything was really wrong (just a persistent sore throat & earache). Although the surgeons were able to spare his jaw and teeth, they had to remove most of his tongue.
About the saddest thing I've done lately is to ship Matt some French chocolate truffles. I wanted him to try them before he would no longer have the capacity to taste anything. Unfortunately, though they arrived in time, he was by then too sick to eat anything at all. Poor kid. One can hope that someday he'll benefit from some of the new technologies that may make a tongue transplant do-able in future—including attaching all the nerves to make taste possible.
Do you remember Giovanna, the extremely tall Italian medical doctor? To go along with everything I'd read on-line, she'd never heard of anyone under 40 getting this type of cancer. By rights, he should have been chewing or smoking tobacco for decades.
Hug your kiddies a little harder tonight.
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We had been planning on spending Christmas 2006 in the States for the first time since our move to France in 2001, initially to celebrate my in-laws' 50th wedding anniversary. Matt's illness put an especially acute urgency into this visit Stateside. In the meantime, my brother and sister-in-law started posting regular updates about Matt's situation on CarePages, and I and my daughters (along with scores of other friends and relatives) posted our good wishes on the CarePages message board.
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CarePages: Thinking of you
October 31, 2006
I'm terribly sorry to hear the recent news [about needing surgery on his arm]. Matt, I hope that you are well enough to have surgery Thursday and that you recover quickly and completely. I am proud of the courage and integrity that you have all shown facing this illness. I hope that it continues to provide you with comfort and strength.
Lots of love from your cousin Britta in San Diego
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CarePages: Waiting to hear!
November 03, 2006 at 02:45 AM PST
Dear Matt and family,
Here we are in France on Friday the 3rd at 11:30 a.m., 9 hours ahead of your time, so we know that (barring insomnia on Ann's or Art's part), it will still be several hours before anyone will be awake enough to post the news on how your surgery went. Of course, we hope things went better than expected, and that your recovery will be as quick and pain-free as can be!
[a hopefully amusing description of local wild boars snipped]
We love you and are rooting for you, Matt—keep up your courage, and make yourself eat even if you have no appetite. (Hopefully my little treatise on sangliers [wild boar] will not have diminished your appetite further! :-) Eat! Eat!
Love, Aunt Mo (& Uncle Brent & Cousin Renée)
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CarePages: Sending Good Thoughts
November 03, 2006
Dear Matt, I'm so relieved to hear that yesterday's surgery was successful! I'm very thankful for this website, since it has let me stay up-to-date with everything. As my sister said, everyone is so proud of you, and all my thoughts are with you (and so are those of all my friends here in New York)!
Much love, your cousin Julia
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November 22 (to Mr. Mofembot and our daughters)
After seeing today's CarePages update, I talked to both John [another brother] and Carol [my sister] very early this morning (as in 4h45). John had a lot more info than has as yet been posted, and of course (of course!) it is not good: after a month, the spots in Matt's lungs have doubled in size and he has at least one spot on his back (hence my concern when I read that his back hurt while he was at Disneyland).
The powerful chemo cocktail his oncologist proposes to start him on next week could kill him, given that he has no reserves (he cannot afford to lose any weight at all—he's already at risk for the same kinds of heart problems as genuine anorexics). But the bottom line is that it's either this cocktail or nothing (except palliative care). Regular chemo and apparently other kinds of intervention aren't enough to stop this miserable disease, but clearly there's only a very slender chance that the cocktail will do anything more than prolong Matt's suffering.
Art & Ann seem to be leaning toward favoring the "quality of life" consideration rather than subject Matt to frequent hospitalizations, prolonged nausea between treatments... either there's going to be a miracle or there isn't. As you said, Britta—and both John and Carol echoed this thought—there are no good choices. Matt's parents stand to feel guilty and "faithless" if they don't permit this aggressive treatment and Matt dies. They will feel guilty if he dies having gone through this hideous side-effect-laden treatment.
John believes Matt will be miraculously "saved" at the last minute. Carol, on the other hand, knows that a blessing that promises that "Matt will be well," can just as easily translate as "he will die and thus be well again." What is certain is that this is an incredibly awful experience for Matt and all his family.
Given the speed of growth and apparent generalizing metastasis, left untreated, Matt has only a couple of months to live at best.
What happens at Christmas with regard to our visit will depend a bit on whether Matt has chemo or not. Depending, I would like to ask you all to please come up to LA no later than the 20th and not leave for the Bay Area [where my inlaws live] until the 22nd—and maybe not until the 23rd. I am arranging with Carol to have a family dinner on the 21st; my parents should be in town by then if not earlier).
Let me know your thoughts. We cannot do anything for Matt and his family, really, except be there for a few days to show our concern and support.
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As soon as Matt's illness was diagnosed, his father and other Mormon male relatives performed several blessings of healing by "the laying on of hands." Although never directly blessed to be cured, the language of these blessings underwent a subtle transformation as Matt's illness progressed. In addition to more frequent inclusion of the submissive phrase "Thy will be done," the principal concern became that of alleviating Matt's suffering, and to give him and his family courage to face the trials that lay ahead. Mormon (and non-Mormon) congregations all over the U.S. and in France prayed for Matt, as did the Mormon church presidency (a "pushy" non-Mormon friend brought Matt's case to the attention of the Mormon leadership; then-church president Gordon B. Hinckley, a cancer survivor (now deceased), sent Matt a very kind personal letter).
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November 22 (to my in-laws)
I want to let you know that things are looking pretty grim for my youngest brother's son Matt. After having 3/4 of his tongue removed this past spring and going through radiation & chemotherapy, a few weeks ago his doctors found spots in his lungs and in his left arm. He had surgery about 2.5 weeks ago to install a rod in place of the two inches of bone a tumor had virtually dissolved in his upper arm. The doctors were appalled that the cancer reappeared so quickly after treatment. Anyway, I have talked to my brother John very early this morning, and within a month's time, the spots in Matt's lungs have doubled in size and he now has at least one spot on his back.
Matt's oncologist has proposed starting him on an extremely powerful chemo cocktail right after Thanksgiving. Unfortunately, this treatment will produce extremely unpleasant side-effects and its chance of success is quite low, so my brother & sister-in-law are struggling with the decision. Your thoughts & prayers would certainly be appreciated.
Without treatment, given the rate of generalizing metastasis, Matt doesn't have very long to live; not clear if treatment will do anything other than prolong his suffering—and, in fact, given that he has no reserves (he is a walking skeleton from not being able to eat very much—he's mostly being fed through a gastro tube), the treatment may kill him. [Matt, 5'9" tall, dropped to 38 kg—about 84 lbs.] What a terrible choice!
Right at the moment it looks like we will all be visiting my family around the 20th until either the 22nd or 23rd before coming up to the Bay Area. (How long we stay in LA may depend on what's going on with Matt—whether our presence is helpful or just "more to deal with.") We will probably have to play this by ear a little bit until we are on-site and/or my brother & wife make a decision about Matt's treatment.
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CarePages: Choosing
November 22, 2006 at 05:27 AM PST
Dear Art & Ann (& Matt & sibs),
As you may know, we moved from a 9-room house to a 4-room house this summer, and I have been winnowing down our possessions carton by carton. I came across some choral music the other day from the seven or so years I was church choir director in Pittsburgh, and I put aside several pieces, one of which I have been hearing in my mind and thinking about for days, the moreso now as I have read the latest CarePages update. I am not particularly a fan of Edward Elgar, but he composed a lovely setting for these words from a poem by Longfellow:
As torrents in summer, half-dried in their channels,
Suddenly rise, though the sky is still cloudless,
For rain has been falling, far off at their fountains;
So hearts that are fainting grow full to o'erflowing,
And they that behold it marvel, and know not
That God at their fountains far off has been raining!
We all so dearly hope that Matt will be spared and have the opportunity to live a full adult life. While I cannot pretend to know what rules there are (if any there be) about divine intervention, one line from the French missionary discussions (from my time) that I always liked was "Dieu n'est pas un Dieu impitoyable ou vindicatif"—that God is not pitiless nor vindicative. Whatever you and Matt decide—to undergo treatment or to forego it—God will not punish Matt (or you) for a "wrong" choice (assuming there could be such a thing under the circumstances), but rather, as the scripture says, "God will wipe away all tears"—be they tears of joy or sorrow (or both, as so often seems to be the case). And I think that is a message found throughout scripture: that God does not promise to take away our trials, to fix everything, but to stand with us and comfort us and strengthen us in our times of need.
We love you all and are thinking of you constantly, and look forward to seeing you soon.
Love, Mo & family
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November 28, 2006 at 04:08 AM PST
Hello Art & Ann & Matt & Sibs,
We totally concur with your decision and although there are tears in our eyes, we have hope in our hearts.
We love you,
Mo et al.
*
Our youngest daughter, three days older than her cousin Matt, took the news of his illness and impending death very hard.
CarePages: November 30, 2006 at 12:27 PM PST
Dear Matt,
I wanted to let you know, and your family know, that there hasn't been a day when I haven't thought about you. There hasn't been a night where I haven't prayed for you. I hate that it took all this for me to tell you that I love you. I love you Matt. I always have. I only have good thoughts when I remember our times together! You made me laugh so hard! I loved it when we played knights with lego swords and shields together! I've always loved spending time with you and your family! You all are so sweet and generous! I can't wait to see you!
Much love,
Cousin Renée
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Our visit with Matt and his family before Christmas was all too short; in fact, the most time my daughters had with him was accompanying him to a Kaiser Permanente clinic for radiation therapy to try to shrink the ever-more-painful tumor in his back. We left LA with heaviness in our hearts, knowing that at least for Mr Mofembot and our youngest daughter, both of whom would be returning to France from San Francisco, this would be the last time they would see Matt alive.
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Jan 9, 2007 [written from Calif. to Mr Mofembot in France]
I don't know if this is even something they would consider, but I want to do it if they think it would be helpful and if it's possible. You were at Art & Ann's only for a short while, but I was there for longer, and so I have seen first-hand how hard they are trying to juggle the various components of their lives while coping with Matt's increasing needs.
I am proposing to go back to Calif. to help Ann in particular deal with her professional workload and to be available as a live-in assistant for a few weeks: I don't think Matt is going to last very long at all (I assume you've seen the latest CarePages update—?). Although all of the nearby relatives have been helpful, there doesn't seem to be anyone in a position to be at A & A's full-time. They are so exhausted, and things are going to get worse. Moreover, having looked it over a wee bit, I think I could learn to do what Ann does fairly quickly—something my parents (for example) would not be able to do.
Although it would be cheaper to go back from NYC, I recognize that it might be more sensible for me to come home for a little bit and then return for however long would be needed, particularly given that various papers and appointments (MRI, orthodontist) need taking care of.
*
After a short week in France to deal with business, I returned to California. As my uncle in Anaheim was also dying, my parents and I visited with him and my aunt before going up to my nephew's home—a necessary, but in some ways very unfortunate delay.
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January 22 [to a Stateside friend]
I flew in to LAX Sunday night and am now at Art & Ann's to help with Matt. Yesterday, just before I arrived at their home (as in 30 minutes prior), Matt had a significant downturn—a major stroke—and is now in a coma, w/seizures and strokes evident, very labored breathing, no control over bodily functions, etc. Death is imminent, and quite honestly, given how much pain he had been in, this is a good thing.
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Jan 22 [to Mr Mofembot and daughters]
It's very clear that Matt is going to die very soon, quite possibly sometime today. ...He took a significant turn for the worse around 3 pm yesterday—several strokes/seizures (which continued on and off for hours), very labored breathing (gasping, shallow, irregular), rapid heartbeat, completely blown (dilated) pupils, coma—he is almost totally unresponsive to pain or anything else. I just checked on him and he seems to be sleeping, I think, and his breathing is still raspy but now more regular, and his eyes were not as dilated when I went to bed at 11 pm PST, but still seem unresponsive to light.
Talk about timing.
Virtually every member of both sides of the family within shouting distance came last night to say goodbye. Many tears. Many hymns.
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January 23 [to Mr Mofembot and daughters]
Matt died fairly peacefully this morning at 7:47. I will tell Art & Ann et al. that you are thinking of them.
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January 24 [to Mr Mofembot and daughters]
They're using the large Mormon church for Matt's funeral, and even so, I wonder if it will hold everyone who's going to come. Art & Ann are going to Forest Lawn [mortuary, cemetery] mid-morning to make the final arrangements and I need to be here when the hospice people come to take back all of the equipment.
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End of selected emails/entries
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A few thoughts:
On my nephew
Matt was a mischievous, gentle, and loving young man who showed tremendous courage throughout his ordeal. He was never heard to say "why me?" When he realized that he was going to die, he used the time he had left to write an amazing number of notes and letters of thanks and encouragement to many people. He spent his trust fund setting up a scholarship for his best friend and buying gifts as remembrances for family and friends. I regret very much that our living overseas did not permit me and my immediate family to get to know Matt as well as we would have liked.
On the kindness of friends and of strangers
Matt had a loving family and nearby extended family and a huge support system. After a story appeared about him in a local paper in November 2006, many people—complete strangers—offered their help. One man kindly lent his extensive DVD collection. The Make-a-Wish Foundation helped pay for a hot tub to ease Matt's pain. The Michael Hoefflin Foundation and the American Cancer Society provided material and moral support. A local doctor gave Matt a ride in his lemon-yellow Lamborghini (Matt was always a sports car fanatic). A nearby police department took Matt for a helicopter ride.
Local Mormon congregations brought in TONS of food—my brother and sister-in-law didn't make dinner for literally months. My brother's boss was extremely generous with Art's work assignments, and his coworkers donated many days of vacation time so that he could be with his son. The BYU football team made Matt their special guest at their bowl game in Las Vegas.
And fortunately enough, unlike so many, my brother had excellent health coverage and Matt received wonderful and compassionate care from the Kaiser Permanente oncologists and hospice care workers.
On making the exception the rule
As I said above, there was an amazing outpouring of love and compassion and help for my nephew and his family. But even while I was there at my nephew's, I could not help but think of all the people who, at that very same time, were trying to cope with the same kind of illness and fear and need... and who did not have this kind of support. And who didn't have access to good care, and whose families were facing ruinous debt in addition to the specter of death. And I grieved to think at how truly exceptional my nephew and his family's experience was in today's America.
The bleak scenario of lonely suffering and death must change: we must work to make available and normative the kind of experience my nephew and his family had during this so very difficult time. And we must be sure to change the wrongheaded policies of the Bush administration vis-à-vis stem cell research—something that perhaps might have helped my nephew had the work been allowed to go forward after Bush was installed. [Per my introduction, I am so very grateful that the Obama administration has dialed back this terrible impediment to research.]
On faith
From the moment I heard Matt's diagnosis, I knew without a doubt that he was going to die. It took longer for some of my relatives to understand and accept that outcome. As hope of a miraculous cure turned more and more to the desire for Matt's suffering to end, I wondered what effect this would have on my extended family's belief in God.
Six years on, my brother (who has gone even further down the tea-party path, alas)—Matt's dad—still relies heavily on a common Mormon afterlife narrative: God "needed" Matt for a special mission on the Other Side. (I had far less difficulty in this instance of accepting my brother's reliance on this narrative than I had had when a dear friend's husband died, leaving her with four young children: it was all I—and she!—could do to refrain from smacking the well-intentioned souls who thought the line "God needed him" was somehow comforting.)
I was certainly not going to debate theology with anyone at this difficult time: whatever brought comfort was (and largely still is) fine with me. I bit my tongue to refrain from replying to a phrase I heard over and over (mostly from my parents)—"I can't imagine how nonbelievers can go through this." The night before Matt died, I sang the hymns with everyone else, and I willingly referred to biblical and Mormon scripture to try to bring comfort to my grieving relatives. I felt and hoped and longed for the blessings of immortality and eternal life spoken of during Matt's funeral service, and at his graveside.
My brother still misses his son dreadfully, and still sees him as spreading the Mormon version of the Christian gospel to the masses on the Other Side (who will eventually be baptized by living proxies in a Mormon temple here on earth), still sees Matt as hob-nobbing with Mormon notables in the hereafter. Now, just as six years ago, far be it from me to argue with whatever can bring my brother and his family comfort in the face of such a cruel and painful death, even as time has worked its magic in easing their grief and allowing them to get on with their lives.
Matt's mom still buries herself in her work as a means of coping with loss, but speaks of Matt with a smile and genuine hope and joy in her heart. Matt's siblings still seem to be doing well, and they keep Matt in their thoughts and hearts always.
As for me, it is a long time since that I have considered myself an agnostic. I don't know if there is a God, I don't know if there is a life after this one, but all rational evidence to the contrary, part of me hopes that life continues beyond the grave. (And to be clear, I hope that life continues in such a way that "I will be me"—not reincarnated as someone or something else, but resurrected as myself, remembering this life.) As the years pass, there are more and more loved ones, Matt included, whom I would like to see and talk to again.
More important than hopes for an afterlife, I think, is that Matt's death and all the attendant ideas and feelings still lead me and mine to think more deeply about life in the here and now. When I think of death—what seems to be the waste and futility of it, and the sadness associated with it, especially when it strikes one so untimely and so young, I think of Dylan Thomas's words:
Do not go gentle into that good night:
Rage, rage against the dying of the light.
May we each appreciate the light of life that we are privileged to enjoy, and may we cherish the time we have to be with one another.
Posted in memory of Matt, June 18, 1991 - January 23, 2007.