History

Friday, May 6, 2005 6:29 AM CDT

The baby was born yesterday, May 5, 2005, at 5:30 pm. The day was marked by sombreros, quesadillas (and a visit from baby-holder extraordinaire Steve Goldberg -- he was about two hours early this time). Naomi and baby are great. She is 9 pounds and 21.5 inches. We are working on a name and I expect she have one by the end of the day. Jake has not missed a beat as a big brother. Naomi should be home sometime over the weekend.

Matt

Tuesday, March 29, 2005 8:16 PM CST

It was a year ago this morning that Julien died in our arms. We removed the ventilator, the monitors, even cut the medication lines that had been surgically placed in his chest nines months earlier. We untethered him and let him reclaim his body. And then his death untethered us in some fundamental way, and left us unmoored and adrift. I recently came across a line by Judith Bulter, where she says, “Let’s face it. We are undone by each other. And if we aren’t we are missing something.” I can’t imagine that anything undoes us quite as much as love or loss. We were undone by our children’s births and have now been completely undone by Julien’s death. We are still groping for ways to remake ourselves, to reattach ourselves to our lives and the things of this world.

This year Matt and I have spent in this state of suspended animation: coping, surviving, clutching Jake, making ourselves available to grief, exerting tremendous energy to simulate normal life in the hope that life would start to feel normal again. Every so often it does, but mostly normal life is still a lot of work and still feels too empty. A few times during the last year I have come across pockets of peace, a sense of things being alright. This peacefulness doesn’t come from a belief that things had to happen the way they did, or that they were meant to happen as they did for a reason, but simply from the fact that they did happen. The powerful and overpowering fact of Julien’s death is sometimes enough, all by itself, to demand acceptance. But I am prone to stubbornness and most of the time I kick and scream and rail against it.

This month has been a rough one for both me and Matt, from start to finish. A sadness that had become chronic became acute again. We began the month in California for an unveiling of Julien’s headstone. The relentless rain there prevented it from being set, but we placed the stone on the ground, surrounded by hyacinth and wildflowers, and with a few friends and family we said some prayers and talked about Julien. [I have posted some pictures from the unveiling.] The middle of the month we spent holding our breath in dread of today, and now here we are, exhaling.

This day we have dedicated to small rituals, to being together, and to just being present to how desperately we miss Julien. Nina taught my class today so I could be home, Matt stayed home from work and Jake is on spring break, so we are together. This morning we made pancakes and lit a yahrzeit candle for Julien. Jake decided to say a familiar Hebrew prayer with “JJ” inserted in it. He translated it as: “God bless you. We hope you are well JJ. Amen.” Julie brought over two big armfuls of tulips and daffodils for us, for Julien, and for the spring that had been holding out on us. By afternoon it was warm and sunny for the first time this year. We spent the afternoon in the front yard playing with water balloons, cleaning up the flower beds and hanging gifts in the top branches of Julien’s magnolia tree. Matt got on a ladder and put our Lance Armstrong bracelets in the tree. He hung a letter that Jake wrote to Julien. It read: “Thanks for all the love you have offered me JJ.” And we tied the traveler’s prayer that had hung from Julien’s hospital bed to a branch. That prayer accompanied him on his journey through illness and we read it at his funeral as well. It asks God to “lead us toward peace and guide us in peace. May we arrive at our destination in safety and tranquility. May you rescue us from evil and harm. May you bless us and bestow mercy and kindness upon us. May you hear our prayers.” Then Lisa appeared with a bundle of roses. Much like we have been over the last two years, we were sustained today by our friends who came by or called or left messages letting us know they were thinking of us and Julien. Today has been awful and lovely. Sad and hopeful. Dark and sunny. Such is life and death and the full catastrophe. In pancakes, tulips, water balloons, and the promise of a new baby, we continue to seek the tethers to a life refashioned by Julien’s absence.

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While we will be sure to post a birth announcement when the baby arrives, in what we anticipate will be the beginning of May, this is probably our last regular entry. We will continue checking the site for your messages at least through May. Your messages and the love they convey have meant so much to us and have kept us afloat through the two hardest years of our lives. So it is with mixed emotions that we have decided to close the website. We are doing so mostly because it feels right, because we want our old and new friendships to begin returning to normal (so that we worry about your problems as much as you worry about ours), because we still have email, and because Jake reminded me that it was time. Up until a few months ago, every time Jake had a chance to make a wish (on a penny, a candle, a dandelion, a wishbone) he would always say, “I wish JJ was alive.” Now when he makes a wish, he either says, “I wish that nothing bad will happen to our family again” or “I wish we could be happy.” I don’t take his focus on the future as a reprimand to forget the past or forgo the present, but just a reminder to commit fully (no matter how untrustworthy it still feels) to a future in which we are healthy and happy. In that future we won’t need a family website, but we will continue to rely on you as much as ever for love, support, memories of Julien, and joyful friendship.

Friday, February 4, 2005 9:07 PM CST

“Swimming”

by Matt

I joined the Masters Swim Team at Georgetown University last September. At the first practice, I realized that it was the first “social” setting I had been in with new people since Julien died. For the first several practices, it was basically a business-like affair; not much talking; get in; swim; get out; go home.

For a dry-land athlete like me, swimming is a strange and, unfortunately, fitting activity. It involves carefully examining something that I took for granted and that I thought I knew how to do. I haven’t swum in any organized fashion since my summer camp swim team in 1977 (where I actually won a few races as a backstroker). I always thought that my stroke was basically good but I just needed to practice some and get into better shape. As it turns out, almost nothing about my stroke is good, right down to how I breathe. Also, the sensation of being out of breath in the water is foreign to me. I still can’t gauge how hard I can push myself in the pool whereas I don’t think twice about what I can do on a bike. Finally, I didn’t appreciate how physical a sport swimming is, especially as a novice swimming in a crowded pool. I hit the wall, the lane markers, or another swimmer every practice. I swallow what feels like a gallon of pool water every practice and get almost that much up my nose. I get cramps in my calves, feet and toes. I struggle to keep up, even in “lane one,” which is reserved for the old, out-of-shape, or otherwise unfit swimmers.

I am now in my second semester of swimming and I can already feel the improvements I have made. I can complete the workout; I still lag behind but not so much that they start the next segment without me. I can breathe on both my right and left side when I really concentrate. Occasionally, I actually feel good in the water.

Every part of swimming reminds me of Julien and my life since he died. I have to think about how to do thing that I thought I knew how to do. I try to learn new ways and also to shed old, bad habits. I don’t know how hard I can push myself in the emotional swimming pool of life after Julien. I feel battered, bruised and out-of-breath. I struggle to keep up with whatever it is I am keeping up with. Regular life still feels sometimes like I’m keeping my head in the water for one or two strokes too many.

The people I swim with in lane one have also become more human and open to me. There is a 60 year-old curator at the National Gallery whose son got him into triathlons; there’s a German economist who works at the work bank and has two children six years apart; and there is an Australian graduate student whose sister died at age 15.

It’s been almost a year now since Julien died and, when I really concentrate, I can breathe on both sides and actually feel good.

Monday, January 3, 2005 12:14 AM CST

They say that the holidays are harder after someone you love dies. We have found this to be both true and not true. They are hard in the same way that every day is hard. And they are harder in that they exaggerate the sense you have of living in an altered universe: people, stores, media all emphasize the excitement and joy of the holidays and we still find it hard to believe that the world goes about its business without registering the staggering loss of Julien. That is one of the oddities of private tragedies--from the moment they happen you realize you live in a different reality from everyone else around you. But in one way holidays are less hard than they say. We have found that anticipating them is worse than the actual fact of them. This was especially true for Julien's birthday, December 28, when he would have been 3. Hanukkah was pretty bad, Christmas less so, but I had really been dreading his birthday.

On the morning of December 28 we drove up to Fresno and went straight to the cemetery. My mom was with us and Mary Alice met us there, as did Kate and Rony, Julien's godparents. It was a threatening grey day with moments of vibrant sunshine and it was beautiful in the Sierra foothills. Academy Cemetery is such a familiar and comforting place for me--I feel surrounded by family, dead and alive. As is Julien. His grave is exactly between two sets of his great-great-grandparents: the Stehliks (for whom he is named) who immigrated to California from Czechoslovakia, and the Simpsons, whose parents came in covered wagons, and settled, lived and died on that very land. Julien's grave is covered with toys and treasures: the beautiful stone box Julie left is still there housing its exquisite seashells; there are messages, toy cars, ceramic frogs, muddy stuffed animals, his firetruck and even a tiny pail of Halloween candy. Jake picked out three gifts to leave for JJ--a little dried starfish and two glass hearts. He put them in the stone box for safe keeping. Then Jake ran down to the creek to see if there was water in it; we walked among the two-hundred-year-old headstones with their delicate carvings and flowery engravings; we talked about Julien; and we cried a little. The thing about acclimating to living with grief is that the hard days aren't so different from the normal days--they are just a little sadder. That is how Julien's birthday was.

If New Year's Day is any indication of the year ahead, then 2005 will be full of surreal amusements, of the joy of watching my children experience profound pleasure, of missing Julien, and of exhaustion. We spent New Year's Day at Disneyland. During the boat ride through It's a Small World, Jake leaned over and said, "This is the happiest thing I have ever seen." In the line for the Toontown rollercoaster he exclaimed, "This is the best part of my entire life!" And he has not stopped talking with awe about the 18th century sailing ship we rode around Tom Sawyer's island, with its elaborate riggings and replica canons. The hardest part was walking by the Tikki Room where two and a half years ago we retreated with Jake and a six-month-old Julien to escape the crowds and dazzling heat outside. In that strange dark hut of totem poles, exotic birds and Tahitian drums our normally mellow and unflappable baby began bouncing up and down and flailing his arms and legs in excitement at the ecstatic drumming. In some ways that moment awoke in Julien a more expressive and excitable self that endured until the day he died. It is also one of my most vivid memories of him. Appropriately enough, the Tikki Room was closed this visit for renovations.

Matt & I are cautiously optimistic that this year will be better than the two that preceded it, but we are humbled by our utter inability to predict or control the best and worst aspects of our lives. We both believed 2004 would be better than 2003. While I hope I never have another year as awful as this last one, there were a few bright spots, and one of the brightest was the arrival of our nephew Jackson, who is named for Julien. Judah and Teel's baby was born December 17 and we are so happy to have him in the world and in our family.

Tuesday, November 23, 2004 8:09 PM CST

I haven't posted for a long time. There always seems to be both too much and too little to say. Too many of the little details of life that get us through it, and nothing new to say about the central and constant fact of Julien's presence and absence in our lives.

Of the details, a few stand out. Jake loves the latest addition to the Smithsonian complex, the National Museum of the American Indian. During one visit Jake stood staring up at a dark ceiling lit with thousands of tiny stars. It showed the constellations that many tribes see. As we looked for the drum and the beaded vest among the mass of stars I explained to Jake that each society sees in the night sky the things it believes in. He was quiet for awhile, and then he said, "I believe in JJ but I don't see him in the sky."

Halloween was wonderful and painful. Julien's absence was palpable and my memories of last Halloween spent in the hospital with a hurting boy were so vivid. But Jake kept us focused on the task at hand, which was to trasnform him into a vibrant green dragon. It was the first time since infancy that he hadn't been Buzz Lightyear for Halloween and I was so excited by the artistic possibilities that I got a little carried away. Together we made a giant Chinese dragon head out of papier mache and I sewed the green satin body and the long spiny tail. But Jake was the artistic director throughout--wanting more sequins on the head and requesting that I add wings with gold piping. He said at more than one point, "I am going to be the hit of Halloween." And he was. (Pictures are posted.)

As for the rest of it, it is hard to know what to say. We are pummelled by sadness but surviving, moving through each day bouyed by work and family and friends. It has been really nice to be teaching again. I love my students. But my life is a mess of irreconcilable juxtapositions, as exemplified by the top two items on last week's "to do" list: 1) order a turkey from Whole Foods; 2) order Julien's headstone from Meechum Memorials.

Most of the time I still feel extraordinarily lucky for all the privileges of my life, the greatest of which is being Jake and Julien's mother. No matter how far they wander or how long they are gone, I will always be that. And recently I have been feeling especially lucky because I am pregnant again. We are expecting a little girl in the beginning of May. One of the gifts of this pregnancy is that it reminds us that the future still holds joy for us.

So I am very thankful this Thanksgiving, but I am also thinking a lot about the many families passing the holidays without their children, or with their children in the hospital. They are in my heart.

Thursday, September 16, 2004 10:20 AM CDT

Today is Rosh Hashanah, the Jewish new year, and today was also to have marked the start of Julien's future. It is one year since his bone marrow transplant, the point at which he would have been essentially cured, recovering his immune system, and able to play with other children again. For many months following his transplant we held this date in our hearts; we just had to make it to September 16, 2004, and then we would be able to breathe again.

This morning, on the way to the Rosh Hashanah kids service, I walked past Julien's magnolia tree to get into the car. One rain-laden branch brushed against me, showering me with water. "Hey," I said, "Julien just splashed water on me." Jake and Matt and I began talking about how much JJ liked to play in the water, and his exuberant splashing in the bathtub. Matt said, "He never learned how to be a gentle splasher." And Jake added, "That's because he didn't have a long enough life."

As is traditional on Rosh Hashanah, they blew the shofar, a curved horn that makes a haunting, animal sound. It is a reminder to listen: to life, to each other, to ourselves, and especially to God. The picture above is of Julien, last January, trying to blow a shofar. Today, in a room full of children, it sounded like the cry of a majestic creature, a moose or a water buffalo maybe, calling its young, its voice full of urgency, sadness and love.

Thursday, August 26, 2004 10:27 PM CDT

We are recently returned from Vermont, where thanks to Nina & David and Eliza & Ken we had a lovely and restorative vacation. We kayaked on Lake Champlain, hiked in the Adirondacks, picked blueberries and played in the pond. Jake milked a Brown Swiss cow named Jeanine at Shelburne Farms. We were really happy there, and still heartbroken. It is cruel in a way that the happier we are, the sadder too. It is hard to leave home and return home without Julien, it is hard to have fun without Julien, and above all it is hard to enjoy our family when one of us is missing. But we do it anyway. Some moments are brutal and unbearable, a few are joyful, and most of the time we just feel like the walking wounded.

One afternoon in particular I was having a really hard time and missing JJ acutely. Jake and his friend Sarah wanted to know why I was sad, so I told them that I was wishing JJ was with us. As usual Jake replied, "He is." Later, when we were all out in kayaks on the lake, Jake and Sarah, in their magical, five-year-old way, brought Julien along. They kept pointing at the water between our boats, telling us JJ was there in his little invisible boat, admonishing us to wave and watch out for him. It made me feel so much better.

This week at home has been rough. A year ago yesterday we drove to Durham to begin what we believed would be a long journey to Julien's recovery. A year ago today Matt & I began this journal. It is painful to remember how much hope we had and how alive Julien was, still playful and affectionate and bossy even after a hard round of chemotherapy and a month in the hospital. Just 20 months old, and he seemed invincible to me.

Jake said something a couple days ago that has stayed with me and helped me through this week. He was flipping through a book of his about a witch who is trying to pull a giant pumpkin off the vine in time for Halloween when a ghost comes along and helps her. Jake asked why ghosts are strong. I said I didn't know, and that it was strange that they are strong since they don't have bones or muscles. Jake was quiet for a minute and then said, "It's because they still have love in them, and love makes you strong."

Sunday, August 8, 2004 8:07 PM CDT

Austin was right when he said in the guestbook that failure is the wrong word for all the ways in which parents can't shape their children's lives. The funny thing is I have been thinking all week about why I used that word. I knew when I wrote it that it was too strong for the context in which I was using it, and yet something felt right about it and so I left it. As I thought more about it this week it was clear why it felt right. Both Matt and I feel in some very visceral way that we failed Julien. Of all the animal instincts that come over you when you have kids, the most elemental is that you cannot let your child die. And so we feel this failure at the same time that we know we did nothing to cause his cancer and everything imaginable to cure it. We feel it even though we know that his illness at his age was neither genetic nor environmental; it was just the result of a totally random cellular mutation. We feel it despite what we gave him and how much more we would have gladly given. The fact is, we feel we failed him because we were his parents and we couldn't keep him alive. It is not rational, but there it is.

This week we were also reminded of how much we are buoyed and made better by friends and strangers alike. Our friends heal us by sharing our grief and loving us and continuing to let us know when they disagree with us (for this reason I appreciate your message Austin, it is a testament to your big heart and your intellectual honesty). And then there are the people we have never met who have heard about Julien and who have kept us in their hearts all this time. They make us feel like kindness runs wide and deep. Larry Anthony works at Georgetown in the registrar's office, and I'd never met him until he came to my office this week to ask if he could run the Marine Corp Marathon in memory of Julien. A couple days earlier my dear friend Diane Huntley called to say she wanted our permission to lead a team in honor of Julien at the Light the Night walk, a fundraiser for the Leukemia & Lymphoma Society. They both touched us to the core. And Diane inspired me to participate in the Light the Night walk here in DC. I have had the brochure on my desk for two weeks while I wondered if I could handle doing it. Thank you Diane for showing me that I could.

If anyone is interested in participating, we would love your company and your help. If you are in the San Francisco bay area and would like to walk with Diane in Santa Rosa on October 9, drop her an e-mail at dhuntley@rrmginc.com. If you are in DC and would like to join us to walk on the evening of October 7, e-mail me at mezeyn@law.georgetown.edu.

Monday, August 2, 2004 9:44 PM CDT

I had a painful moment this evening buying Annie's organic macaroni and cheese. Julien loved the stuff and Jake still does. Julien, who learned his table manners from his mother, would jam big toddler handfuls of gooey macaroni into his mouth. Yesterday I had a painful moment walking past the big expanse of lawn next to the Cathedral where Julien perfected his walking and loved watching Jake play baseball. The day before that it was the usual: just the staggering daily realization of Julien's absence. But these moments are becoming more momentary and more integrated into some semblance of normal life, although it is an emptier normalness than I am used to. And thankfully the painful moments are padded by many moments of comfort and pleasure that come from my work, from a weekend visit from Steve and Koethi, from watching late-night television with Matt, and mostly from long afternoons playing with Jake.

I want to thank those of you who left me messages reminding me that parental grumpiness is part of the package. It made me feel better and it helped me think about why I seemed to be hitting my own natural limit so quickly. I think I am deeply, existentially exhausted from an unrelenting year of physical and emotional labor. I am not sick, but neither do I feel well. So for Jake's sake and my own I am trying to make myself well again. I am swimming some, running some, doing more yoga, and sleeping longer. So far so good; I am sore but not nearly so irritable. I have also reconciled myself to the fact that Jake is going through a licking stage.

My frustration with my grumpiness got me thinking about how parenting is the most marvelous experience of failure imaginable. We have strong instincts about how it should be done, we love our kids more than we thought possible, we try so hard, the rewards are tremendous, and yet no one gets it exactly right. And I'm not sure it matters. Parents can make their childrens' lives a little easier or a little harder, but I've come to think that most of time we don't have much influence over the most important aspects of their lives: their dispositions, their imaginations, who they fall in love with, or when they die. And it is still so worth it.

Friday, July 23, 2004 10:20 AM CDT

So it turns out grief isn't hard. In fact, it is surprisingly simple and easy. It takes hold of you and squeezes you like a fist and demands that you let go of everything else. It is the most painful thing I have ever experienced, but if you do not fight it it's not hard. It is almost effortless pain.

What is hard is anticipating falling into grief, resisting it when it comes, and moving out of it. Sometimes it leaves me refreshed, like after a pounding rain. But more often I am left tired, sad and distracted. And it is then that I have to struggle to be the person or the parent I want to be. Then I am more likely to get irritated with Jake when he is tired and silly and keeps licking me even though I've asked him five times to stop. Or I just shut down for a little while to conserve energy. Neither feels so good. Being grumpy with Jake feels especially bad because I really want him to see every possible moment what a salvation he is. But he is five and I am human and sometimes he sends me around the bend. It reminds me of the very end of Anna Karenina, when Lenin has found this life-changing spiritual faith, but he realizes that it won't keep him from quarreling with his wife or losing his temper with Ivan the coachman. I don't have abundant faith, but I have my old worn faith in the collective goodness of people and I have also found something new and precious in myself--a tiny core of strength that I never knew I had. And yet Jake can still lick me into ill temper.

Jake, by the way, had a wonderful time at his birthday party, and there were so many kids having fun and so many friends to lift our spirits that Matt & I had a pretty good time too. I'll try and post some pictures of the party in the photo album this weekend. I think I'm about ready to remove those hopeful pictures from February.

Last night as we were settling into bed, Jake scooted over closer to me and smoothed out the sheet next to him. "This is a little space for JJ," he said. And I imagined them both squished together listening to the bedtime story.

Saturday, July 10, 2004 4:55 AM CDT

It is 6 a.m. on the morning of Jake's fifth birthday and everyone is asleep still. I woke up unusually early today and had the strong sensation of Julien lying next to me showering me with his sweet smacking kisses. A year ago tomorrow Julien was formally diagnosed with Acute Myeloid Leukemia and was admitted to Children's Hospital that evening. Matt and I have been having a hard week. Part of the hardness, not surprisingly, stems from the confluence of these two days which hold such different emotions for us. Normally proponents of minimalist birthdays (kids, cake, chaos), Matt and I and all his grandparents have been falling over each other to make this birthday an especially happy one for Jake. Granny and Coach arrived last night, the moonbounce arrives this afternoon, and 50 water balloons will be filled this morning. Partly inspired by the Dr. Seuss birthday book (which Suzanne and Thompson gave Jake four years ago), Jake has requested a three-tiered chocolate cake with pink frosting, blue and chocolate sprinkles, gummy worms, plastic animals and a buzz lightyear. Jake and I will tackle that this morning. Today is the day that it matters the most to me to buffer Jake from my sadness. Because the thing is, I am also happy. I feel profoundly happy and lucky to have such an amazing, beautiful kid. And Jake reminds me of that every day of his life. It is hard to describe what it feels like to be so deeply happy and deeply sad at the same time. I am just beginning to acclimate to a strange new emotional existence. I have now met a handful of parents who have lived through the death of a child, and a handful of professionals who counsel such parents, and just about every one of them has said that a child's death changes you. No one has presumed to tell me how it will change me and I am sure it is far too early to tell. But one thing I have been thinking during this week of mixed emotions is that brokenheartedness becomes fundamental to who you are. That doesn't mean you are always in pain or even always sad. Just that you carry your broken heart with you into joy and pleasure. It is a brave new emotional register.

Happy Birthday Jake. I love you with all the pieces of my heart.

Wednesday, June 30, 2004 11:49 PM CDT

Yesterday was three months since Julien died. The day before that Julien would have been two-and-a-half years old. I’ve been looking at a lot of pictures recently and when I look at pictures of him healthy I am always amazed at his vibrancy and his intensity; when I look at pictures of him sick, I am startled anew by the confinement and suffering he experienced. The pictures inevitably make me think about how much Julien had to go through during his short life, but also how openly and unquestioningly he went through it, looking for joy at every turn. They also remind me how often he found it: in a Buzz Lightyear sippy cup, in fire trucks, in barbies, in flipping through a magazine, or just sitting in a cardboard box. Mostly he found joy with Jake: eating froot loops with Jake, lying on Jake, tickling Jake’s butt, being pushed in his stroller by Jake, taking a bath with Jake, holding Jake’s hand. Despite all the pleasure, I still feel desperately sorry for the life that was his. I find myself apologizing to him, not out of guilt exactly, but out of the deepest sense of responsibility for him.

Jake so often pulls me out of my towering sadness. Less than two weeks shy of his fifth birthday, he is blossoming. In the last couple weeks he has learned to swim, write and draw with confidence. His swimming resembles sinking, but he dog paddles around the pool with the most beautific expression on his face. When he started writing his name on the first of his birthday invitations it looked like his usual palsied scrawl. By the time he was done he was making strong lines and improvizing on the standard variations of the letter "E". The next day he wrote his first letter. It said, "HI GRAN I LOVE YOU JAKE." His figures are Picassoesque and his pirate ships could be anguished clams. He is deeply engaged by his life. He talks almost constantly and says strangely poetic things. He launches grand robotic gun battles. He seems mostly happy, and nothing could make me happier right now.

Last week Jake pulled out the paper flower he had made me for Mother's Day and told us that it reminded him of JJ. We asked him why. He said, "JJ loved me like a flower." We told him that was true. Then Matt asked Jake how much he loved JJ, and he said, "I loved JJ as much as beings can love."

Wednesday, June 23, 2004 7:52 PM CDT

We went to Durham last weekend because Martha, who lent us her home for six months, is moving to Santa Fe and we wanted to see the house one more time. Martha was there in all her goodness, as were the familiar blue walls of the bedroom, the towering magnolia in the back yard now dotted by soft white flowers, the pale green towels in which we swaddled Jake and Julien after their baths, the glass table around which we ate all our meals together, and the red rocks in the driveway. And best and worst of all was the keen memory of Julien's presence in every inch of that place, a memory so vivid that it was startling not to find him there. Hardest for Matt was the sound of the red rocks, the gutteral crunch of them under the wheels of the car and underfoot. Matt took Julien on so many drives, and those rocks made the sound of leaving and coming home, of taking care of Julien. Matt put two of those stones in his pocket.

It was a hard visit, but there were also unexpected pleasures: seeing Dr. Kurtzberg and Dr. Staba, watching Jake run around Oval Park with our old neighbors Fritz, Sam and Noelle, seeing Jake's intense delight in spending two days with his best friend from Durham, Noam. They hadn't seen each other since Julien's memorial service, and they were so happy to see each other again. It was wonderful to watch; they are old enough to talk for hours about their lives and young enough to still hold hands. It helped remind me that our six months in Durham were mostly happy ones for Jake. He had a nurturing school, many good friends, a kids' science museum nearby, and a lot of time with his family. Matt & I were not working, rushing, and carefully scheduling our lives. We were all working on helping Julien get better and we were doing it together.

One of the reasons I was so fond of the magnolia behind Martha's house was because we planted a little magnolia in front of our house for Julien after he was born. We chose it because it would not be bare on his birthday in December and it would bloom when Jake's crepe myrtle bloomed in the summer. We also chose it because it is a beautiful tree. It so happens Julien's magnolia just offered us its first-ever flower: one single white cup of a bloom. Since then, Julien has been making a lot small, symbolic appearances. We find his little scrawls and scribbles almost everywhere these days: on the pages of Jake's books, in my datebook, in notebooks and novels. Sometimes they are vivacious sketches, but mostly they are the simplest little marks. He mostly liked to turn the pages, but it seemed important to him to note where he'd been. We all love coming across them. They feel like gifts left for us.

I have begun going to work; my colleagues and the change of scenery are nice. The pain is still breathtaking a lot of the time, but I find myself also living longer moments of expansiveness and even contentment. This evening I was happy. Simply and perfectly happy, and it felt miraculous. Matt and Jake and I went out to dinner at our favorite neighborhood restaurant to celebrate Jake's last day of school. It was a lovely summer evening, rare for DC, and we ate outside. Jake drew with his crayons and told us about his swimming lesson. Matt and I just looked at each other and smiled. It was ordinary in so many ways, and I wished Julien had been there with all my heart, but what felt miraculous was that Julien's absence was not the primary sensation of the evening. It was an outing with my family as it is now.

Sunday, June 13, 2004 9:30 PM CDT

I had been waiting to post a new entry until I was feeling better, but as it appears that it could be awhile, I am forging ahead. Our trip to California was mostly hard. Being home is mostly hard. I have had good hours and good days. I can laugh sometimes and mean it. I am confident that Matt and Jake and I will make it through this. But settling into life without Julien is still relentlessly painful. Right now the hardest part is to keep going when I am not okay. I know that I don't need to act like I am okay (and I don't), nor do I need to act like I am not. I just need to make it through the day. On bad days my body cannot contain how much it hurts, and I feel like a walking firework of pain. Even the words "pain" and "grief" seem inadequate to describe it. It still feels like an indispensible part of my body is missing. On good days I feel like I can make it through the rest of my life with this wound if I keep breathing, keep looking for things that are funny, keep holding onto Matt & Jake.

Tonight as Jake was settling into bed he said, "Sometimes I have feelings but I don't know what they are called." That pretty much sums it up.

Wednesday, June 2, 2004 10:12 AM CDT

We have been in California for almost a week now, and yesterday we went to Academy to visit Julien's grave. The hills around the cemetery are golden now rather than green, and Dog Creek is already dry. Jake, who has been listening to a lot of Pooh story tapes lately, said, "Oh bother, the river is dry." The grand oak stands unchanged. And Julien's grave looks cared for. The toy firetruck we left two months ago is still there, as are many other offerings. Someone had planted flowers. There were two stuffed animals and an assortment of little frogs. And most precious of all, someone had left a carved stone box with three of the most exquisite seashells I've ever seen inside. It was a gift worthy of royalty and it was just sitting in the dirt on a hill way out in the country to honor a dead little boy. I can't tell you how much the beauty and generosity of that gift meant to me.

Someone had also reassembled the star of david we had made out of pebbles. Jake pointed to the star and said, "This is the heart of JJ's castle." Jake, who has also been reading a lot of greek mythology, asked if Julien's spirit had traveled to the underworld. I told him I thought Julien's spirit was right there with us. Jake said that was good because he didn't believe in the underworld anyway.

I left a seashell and three cherries at the grave. Last summer, when Julien went into the hospital for the first time for chemotherapy, one of the things that broke my heart was that he wasn't allowed to eat most fruits, and it was the season of abundant cherries, blueberries and stawberries. I am not sure why I focused on the fruit, of all the things there were to feel heartbroken about then. But I did. I suppose the fruit was just a metaphor for all the pleasures of summer, especially for a toddler just discovering the world, that Julien couldn't enjoy from inside his hospital room. I remember praying that he make it to another summer when he would be well enough to play in the heat, run through sprinklers, go to the beach, and eat all those kid delicacies. So I left the shell and the cherries as a way of apologizing for that unanswered prayer. Jake wanted to plant the pits from the cherries he'd eaten for breakfast, so we did that too. As we were kneeling by Julien's grave feeling very sad, Jake said, "I know it's not happy mother's day today, but happy mother's day Mama. I love you." He always knows exactly what to say.

It is lovely to be in California, but it is also hard to have a family vacation without our whole family.

Wednesday, May 19, 2004 11:44 PM CDT

Seventeen years ago tonight Matt & I spent the evening dancing together at Bruno Weintraub's party. We thought it was the beginning of a short and sweet fling before we graduated from college the next week. Even a relationship of such meager expectations came as a surprise to our friends, since we were at opposite ends of the social spectrum at school. I was an artsy and pretentious poetess. Matt was a jocky, low-key government major. Thankfully, the social spectrum at Wesleyan was incredibly narrow. In the light of day we were surprised by our compatibility and ease together. And all this time later we are still sometimes surprised that our unlikely romance survived the distance and hurdles that followed. But I am so grateful it did. I can't imagine anyone I would rather have had beside me all these years, and most especially this last one. Both his strength and his softness help me make it through each day.

We celebrated our anniversary tonight by listening to Jake make repeated gagging sounds over the trendy neopolitan pizza we ordered for him. But it was a beautiful evening to eat outside, the prosecco was delicious, and we were together.

Friday, May 14, 2004 8:16 PM CDT

Those who know me well know that I am a big crier and always have been. But it turns out I am also a warrior. I was at my yoga class last night and we were doing the warrior pose. It is a deep lunge, feet pressed into the ground, back slightly arched, arms and eyes raised triumphantly to the sky. It felt solid and strong. The teacher said, "Naomi, this is your pose." And I replied without thinking and in total seriousness, "That is because I am a warrior." Who knew?!

We are all missing Julien so much. Jake says he even misses JJ pulling his hair, but most of all he misses playing with him. I miss watching the two of them play. I miss watching them devour bagels piled high with cream cheese and lox. I miss Julien applauding when Jake finished singing the Waldorf blessing before dinner. Mostly I just miss holding and touching Julien. I had an awful hour earlier this week when I temporarily forgot the sound of Julien's laugh. Everything feels so fragile. Jake feels this most keenly. He wants me and Matt to always be with him, even on play dates; he likes being sandwiched between the two of us when we hug ("A jake sandwich, and I am the peanut butter!"); and he is having an unusually hard time saying goodbye when we drop him off at school. This all makes perfect sense to us because we feel it too. It feels like anything could happen to any one of us, so we hold on to each other for dear life. The grief counselor I am seeing put it wisely. She said that we need to regain the illusion of invulnerability, and that it will come. I know it will. We are all three of us warriors.

* * * *

Warrior Matt here. I have been missing Julien so much I can't even begin to describe it. I especially miss him saying "yeah, yeah" in an excited way when we would do something he wanted to do, like go look for fire trucks or dogs and saying "ye-ah" in a sad, drawn-out way when he resigned himself to doing something he didn't want to do, like taking his medicine. More than that, I miss his very presence. I miss always keeping an eye on him to make sure he didn't bump his head or touch something dirty or pull on his lines. I loved always having an eye on that boy.

Thursday, May 6, 2004 1:12 AM CDT

We spent last weekend at the beach with our friends Bobby, Steve & Koethi. So early in the season we had the beach to ourselves, and Jake loved being buried in the sand; building villages of castles, canons and buried treasure; and running into and retreating from the waves. There were many comforts: the endless ocean, the expansive porch of Bobby’s house, old friends, good food, my dad reciting poetry. It was beautiful and peaceful and some of that peace has stayed with me since. It is not that the pain has gone away, but that it is beginning to find a place in life. As unbearable as it is that life goes on without Julien, it is also good and right that it does.

I finished reading Middlemarch. I started it just before we left Durham two months ago and it has kept me company through these difficult weeks. It is a wonderful, masterful book about a place and a time and a group of people whose lives intersect there. It is also about compassion and pity, about chance and coincidence, about feeling invested in the well being of others, even those we don’t know well, about the ways we adorn ourselves with pride, pain, and ambition, about meeting each other with our hearts laid bare. I finished reading this extraordinary book about the same time that Jake and Julien’s beloved pre-school teacher Rie Matsuda ran her first marathon in Nashville in Julien’s honor. And somehow, amid thousands of runners, Rie found herself staring at Julien’s picture on the back of Anne Praderas’ shirt. We have never met Anne; she is a neighbor of friends of ours in Austin, Texas. I finished Middlemarch about the same time that a group of my former students joined together to donate close to a thousand dollars to Duke’s pediatric bone marrow transplant program and yet another group, from a class I taught while very pregnant with Julien, are organizing to dedicate a tree in his honor at Georgetown. The compassion, chance and collection of open hearts that Julien’s life and death have brought together are as moving to me as anything George Eliot could have dreamed up.

When we got home from the beach, Jake said, “I wish JJ had stayed alive so he could go to the beach with us, don’t you?” I told Jake that I wanted that more than anything. I also told him that I thought JJ was at the beach with us, and this time I believed it.

Tuesday, April 27, 2004 9:29 PM CDT

Jake woke up this morning clutching Julien's big stuffed bear, which he now sleeps with, and said, "I want my JJ." That is exactly how I feel almost every minute of every day. In the last week things have gotten tougher. I am numb less often. It feels to all of us like a bomb ripped through our family and left an enormous crater where Julien used to be. His absence is always present. His silence is loud.

Julien always reminded me of the ocean, and oddly enough so does grief. It is like bobbing in the unpredictable Pacific on a beautiful sunny day, feeling the swells, and facing shore to watch the activity on the sand in a detached sort of way. And then you turn around to find a dark mountain of water gliding toward you; you are too far out to retreat and the only thing you can do is dive down deep and let it rough you up. And it does. And just when you think you can't spend another second underwater, you are on your knees in the surf, facing shore again, and it is still a beautiful sunny day. The kids are running around, laughing, moving sand, filling holes with water. The grown ups are sunning on their towels, sitting under umbrellas reading, talking idly to one another while looking out to sea. Few of them notice anything amiss and none of them know you have just returned from battle on the bottom of the ocean.

I find that I often have to remind myself that I can swim.

Thursday, April 22, 2004 4:00 PM CDT

If you know Jake, you know that he talks a lot and asks a lot of questions. Sometimes he asks a lot of questions about Julien: did we know JJ was going to die, did the doctors give him the wrong medicine, what exactly happens to bodies after they are buried, can JJ hear me when I talk to him. He asks these questions matter-of-factly and usually we answer them matter-of-factly and always as honestly as we can. But sometimes he asks a question that stops us short or reduces us to tears. The other night as he was going to sleep, Jake asked me the most painful question yet: he wanted to know if he was still a big brother. Yes, I said, when I could talk. You will always be JJ’s big brother.

The next day Jake was asking how super heroes get their powers, and we were reviewing some of the obvious examples, when it occurred to him that almost all super heroes are ordinary people in disguise (except, as he noted, Buzz Lightyear, who when he is not a super hero is an ordinary toy), and he wanted to know why they needed to be disguised. All this got me thinking metaphorically and I told him that all ordinary people have special powers but only some people discover the full extent of their powers. Naturally Jake asked if he had special powers. I told him he did. Like being a good brother, he said. I told him he was one of the best brothers I’d ever seen, and that one of the things that made him such a good brother was his big heart and his power to love, which might be the most important of all the special powers. I realize this may sound a little sappy, but I actually believe it. I believe that the love our family has received over the last 10 months has changed us, and has made us stronger, and that it is love that will get us through this to some new version of normal. So as Jake worries about being a brother, and Matt & I worry about Jake, and everyone else worries about us, I find it helpful to remember that below the worry is love. Jake is loving Julien, we are loving Jake, and so many people are loving us. And the love is deeply comforting. Likewise, just below grief there is love. That love is so painful right now, but it is also comforting because I’m confident that our love for Julien will outlast our grief.

Jake’s second hardest question was whether I will always be sad. I’m not sure what the answer is. I told him no. For Jake’s sake and for Julien’s the answer has to be no. I will always miss Julien and I will always love him, but I refuse to always be sad. I refuse.

Friday, April 16, 2004 1:36 PM CDT

“One Art” by Elizabeth Bishop is one of my favorite poems by one of my very favorite writers. I’ve been thinking about it a lot this week. It goes like this:

One Art

The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother’s watch. And look! My last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.

--Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.

I’ve been thinking about this poem because I’ve been thinking about loss and I’ve been thinking about writing, and in particular how writing this journal over the last eight months has been helpful to me. The requirements and tactility of language and grammar have helped me to crystallize and organize the amorphous flow and chaos of emotion. I take that exercise to be the essence of this poem. Bishop’s admonition to herself to “write it!” is both an exhortation to admit that some losses are indeed disasters (despite her insistence that all loss can be mastered) and a way to give literal and literary order to unmanageable loss. Writing is Bishop’s way of trying to master, and even make beautiful, the hardest losses; in this case by writing a strikingly beautiful villanelle, which is, fittingly, among the most demanding of poetic forms.

I don’t know if ours is a loss that can ever be mastered and I don’t know if writing can make comprehensible what is still incomprehensible to me, nor am I capable of Bishop’s art; but I do think that continuing to write in this public/private journal that has become so comforting to me may help me give some order to the disorienting pain and deep dispossession that I feel in Julien’s absence. This is just to let you know that I have decided to write this disaster a little further, for as long as it feels right.

Saturday, April 10, 2004 1:33 AM CDT

Friday morning was the memorial service for Julien. It was hard for us, but also healing. It was a beautiful spring day in Washington and we were surrounded by hundreds of family, friends, colleagues, students and doctors, some of whom came from as far as Massachusetts, New York, North Carolina, Tennessee, Texas, Colorado and California. Some of Jake's friends from Durham came up for the service, which was an immense help for him, and for us. Naomi (with my help) wrote--and amazingly delivered--the following eulogy which we wanted to share with those of you who could not be there:

Not many people get to know a two-year old deeply, although a few of you really knew Julien well. For that reason, we wanted to tell you a little about Julien, and what we loved about him, and the things he has taught us. We came across a passage while sitting shivah that struck both of us. It said the question was not whether life was good to you but whether you were good to life. In far too many ways life was not good to Julien. But he was so good to life. From the moment he was born he lived with a voraciousness and intensity that startled us -- and once Julien had teeth it startled Jake too. He was an exuberant biter, kisser and nurser. He was equally forceful in his frustration and in his affection. He met life head on.

In one sense life was good to Julien. He spent his entire life surrounded by love. And Julien was luckiest in the love of his brother. Before Julien was born, Jake called him "JJ" (named for a jet plane) and from the moment they met, Jake looked after him with a tenderness and affection which suprised us. Jake always made sure that JJ had the same treats he had, that he was included in anything he did, and that he had a defender with a large and colorful vocabulary. When we tried to make Julien do something he didn't want to do, Jake would tell us to "stop torturing JJ." When Julien got sick and we explained to Jake that JJ needed to have a bone marrow transplant, Jake wanted Julien to have his blood because, as he said at the time, "he's my brover." Jake held Julien's hand as he relearned to walk after the transplant, he pushed him around the house in his stroller when the weather was bad, and he sang him the Foxy song when he died. In return, Julien loved and adored his big brother and always wanted to be near him. And it was Jake's name that he accepted as his own. He always called himself "JJ."

We have kept a journal for both Jake and Julien and there is an entry in Julien's journal when he was one year old that reads in part:

"Your hunger for the world is undiminished. You are a force of nature: exuberant, physical, joyful, strong, knowing and you have a powerful will. You batter, bite and maul the people you love the most. You devour us and we love every minute of it, although Jake wishes you were a little more gentle. More and more, I think the ocean is the right symbol for you, not as much for its peacefulness (although you have a kind of peace about you -- a peace with who you are) but for its power. Your power is deep and we all feel the pull of your tides."

Julien -- we will always feel the pull of your tides and we will honor you by trying to meet life with hearts as open as yours and a joy as unbounded. We will sing and dance and laugh and eat and ride out the pain that life throws our way because that is what you did.

Sunday, April 4, 2004 11:49 PM CDT

Last Sunday night, a week ago exactly, Matt and I were both staying at the hospital, talking about the day, when we discovered that as each of us had sat at his bedside that day we had told Julien the same thing: that we desperately wanted him to stay with us, but that if he needed to he could go, and that no matter what he chose we would always love him and always be with him. He died the next morning rather suddenly. Matt and I sat on the bed holding him as he died, and then we kept holding him. We couldn't imagine how we were going to walk out of that hospital without him, so we just kept holding him. We held him and cried while he grew cooler. We held him for seven hours, until it was clear to us that there was no more life in his body, that he was indeed gone, and only then could we imagine leaving. His wonderful nurse Elizabeth helped us wash and dress him. We wrapped one of his beloved blankets around him and accompanied him down to the hospital morgue. And then Matt and I walked outside into a brilliant spring evening, the cherry blossoms in full flower, to our car where Julien's car seat sat waiting to take him home. And we drove home without him, to Jake, with hearts broken into a million tiny pieces.

On Friday morning, surrounded by family and some of our oldest and dearest friends, we buried Julien in one of the most beautiful places I know--in a cemetery founded by my great-great-grandparents in the rolling foothills of the Sierra Nevadas, under the canopy of a giant oak tree whose sturdy arms shade Julien's great-grandparents (including the great-grandmother for whom he was named) as well as two sets of his great-great-grandparents. Down the hill to the west are Dry Creek (which is flowing full right now) and a paddock which my grandfather and uncles once used for branding cattle. To the east are the mountains. This time of year there are wild flowers all over the hillsides and along the little dirt road that encircles Academy Cemetery.

Matt and I go through periods of intense grief, and then we settle back into a state of dazed uncomprehension and disbelief. Jake keeps asking me why I look so sad, and I keep telling him. My whole body aches for Julien. I carried him inside me for nine months and I held him and nursed him every day of his life, and now my body feels so solitary and unencumbered. But as Jake likes to remind us, Julien's spirit is with us. And it is. And it continues to remind us of Julien's tremendous exuberance and fearlessness and love when we need it the most. The pain of his absence is intense, but his continuing presence makes us want to seek joy even in the midst of sorrow, find peace in the midst of anguish, and open ourselves completely to love, which in the end is all there is.

Sunday, April 4, 2004 11:49 PM CDT

Tuesday, March 30, 2004 9:28 AM CST

We are leaving for California early tomorrow morning (Wednesday) and are having a small graveside funeral in California on Friday morning. Julien will be buried in a small rural cemetery in the foothills of the Sierra Nevada Mountains where Naomi's family has been buried since they arrived in California in the 19th century. We are returning to Washington on Monday night.

We will sit shivah at our house Tuesday April 6th through Friday April 9th.

We will have a memorial service for Julien in Washington on Friday, April 9th at 11:00 am at Temple Micah on Wisconsin Avenue, just south of Mass. Ave.

As most of you probably know, we practice an ad hoc form of Judaism. Shivah for us will be the period of time for visiting and eating and helping us mourn. Apart from a few prayers in the evening, there are no particular rites, observances, or rituals to be concerned about. We ask that instead of flowers, that you send a small contribution to either Caring Bridge (www.caringbridge.org) or the Family Support Program for Duke's pediatric stem cell transplant unit (Jane Schroeder, Director, Family Support Program; DUMC Box 3350, Durham, NC 27710; (919) 668-1128; www.cancer.duke.edu/PBMT/support.asp.)

Monday, March 29, 2004 5:03 PM CST

Today is the day we never believed would come. Julien had severe breathing problems this morning and could not get enough oxygen to his body even with the ventilator. Naomi and I held him. Jake kissed him and sang to him. His grandparents were by his side. There was nothing more we could do. He died peacefully at 10:25 a.m.

We will bury Julien in California later this week and we will hold a memorial service in Washington after that. We will post the details as soon as we arrange them.

Sunday, March 28, 2004 7:35 PM CST

Today was a hard day. Julien continues to be fairly stable on the ventilator, but the leukemia is taking its toll. Last night and this morning his blood work showed an increase in leukemic blasts and signs that his kidneys are feeling the strain. His liver and spleen are very enlarged from the leukemia and his veins have been leeking fluid into his body which the doctors remove every few hours through a tube in his belly. Tonight he gets his third dose of chemo. We not only need the chemo to be effective against the leukemia, but we need it to work its magic before Julien's organs begin to give out. If the chemo is working, we should know in the next couple of days. Until then we are just trying to make it through each day and night. Now that my mom is here, Matt and I both spend the nights at the hospital taking turns sleeping and sitting next to Julien to sing and talk to him. We each come home briefly during the day to play with Jake and take a shower. My wonderful colleagues are keeping mountains of food in the house, and our incredible parents are saving us from total collapse.

When I ignore all the tubes coming out of Julien and the machines that beep and hum around him, and when I think only of the present moment and the soft, warm boy in the bed who I love more than I ever thought imaginable, then I am okay. But if I avert my glance toward the past or the future, or I pull back to take in the whole picture of the broken boy and his broken family, I am sunk and there is nothing but horrible, hollow fear. And yet, because it is my child, I also have hope. Matt is reading a biography of Woody Guthrie, who once said, "About all a human being is, anyway, is just a hoping machine." And so we beep and hum and hope, and hope all the more when it feels most hopeless.

Friday, March 26, 2004 11:30 PM CST

SATURDAY AFTERNOON UPDATE

Julien toughed it out last night and is more stable today. He is breathing well with less oxygen from the ventilator. He also started chemotherapy last night; he is doing battle on several fronts right now, even while he seems to be sleeping. We talk to him, hold his hands, nuzzle him, and rub his furry little earlobes. Jake sings to him over the phone.

I am home for a quick break to see Jake, take a shower, maybe a nap, and check the guestbook for your beautiful messages. Thank you. You helped Julien make it through the night.

* * * * *

This is Paul Herman writing with a brief update on Friday evening. Naomi asked me to write because she and Matt are both at the hospital tonight, but they wanted to let everyone know what is happening.

Unfortunately, the news isn't good. Yesterday, the doctors successfully drained off some of the fluid from Julien's abdomen, which seemed to help matters somewhat. But earlier this morning, Julien began having trouble breathing. Around noon today, his left lung collapsed and the doctors intubated him to keep him breathing. He is now on a ventilator under heavy sedation, but he is breathing well.

The fluid accumulation continues to be a problem, and Julien is dealing with several other issues as well. The doctors have told Naomi and Matt that the next 24-48 hours will be critical.

According to the staff, Julien can hear through the sedation, so Matt and Naomi are talking to him and playing him his favorite music. They're both going to stay at the hospital for the time being, but they will update this journal as soon as one of them goes home for a break. If they can't make it home for awhile, I'll write again when there is new information or a significant change.

-- Paul

Wednesday, March 24, 2004 9:53 PM CST

WEDNESDAY NIGHT UPDATE: The doctors are fairly confident that the mylotarg treatment is not working as well as it needs to and that we will have to move on to conventional chemotherapy to try and get Julien into remission. There are a couple of different approaches available, and we have been talking to both of our amazing doctors about them tonight (the indefatigable Dr. Kurtzberg calls everyday and even stopped by the hospital when she was in town last week for a meeting). We are now hoping Julien makes it to a second transplant rather than hoping he won't need one. The last couple of days have been especially hard. There were no monents of playfulness, only discomfort. Today Julien didn't even wanted to open his eyes. Matt & I both have our moments of inflated optimism, but mostly we are just in pain. We have not been doing a good job of answering calls and e-mail, but your messages mean so much to us. After seven months of reading the guestbook, I am still amazed by how good it feels to know that so many of you are holding us all close and wishing and praying and beating drums for Julien's health.

* * * *

A very quick update to let you know that for the most part Julien remains about the same. The good news is that he no longer needs supplemental oxygen, his blood cultures no longer show any infection, and his organ functions are still pretty strong. The not-so-good news is that his rash is worse. It is painful, itchy and has begun to bleed a little. His abdomen is still very distended. The doctors are considering putting a line into the abdomen to drain off some of the fluid. Most importantly, while the leukemic blasts have been reduced by the mylotarg treatment, they have not gone away. The doctors want to give it a few more days, but if the blasts don't go down any further we will probably proceed to chemotherapy in an effort to get Julien back into remission.

At the moment the hardest part is simply seeing Julien so unhappy. Even on pain medication and anti-anxiety medication he is frustrated, uncomfortable and sad. On good days, he has moments of playfulness. On bad days he sleeps, cries and fights the nurses. After visiting Julien a couple days ago, Jake asked me why he didn't smile anymore. I told him Julien didn't feel good and he had to concentrate really hard on getting better. Then Jake said, "I really miss JJ smiling and playing with me." We all do, more than we can say. But we are being kept afloat by our friends, family and this amazing virtual community of people near and far who want to help make Julien well and lighten our pain with their love. Paul, who has been my friend since we were 10 years old, came out from San Francisco to spend the last week with us. It was a tremendous comfort and made the house feel much less empty. My mom arrives tomorrow. Matt's parents and my dad are at the hospital every day. So many people in so many ways are helping to sustain us and to get us through each tough day.

Friday, March 19, 2004 12:22 AM CST

As Matt wrote yesterday, Julien is facing some tough issues right now: low oxygen saturation, a touch of pneumonia, a bacterial infection in his blood, a lot of fluid in his abdomen, fevers, and an angry skin rash all over his body (this is the GvHD which returned with a vengeance when they stopped the immunosuppressant drugs in order to help him battle the leukemia). Most of this appears to be related to the relapse and his overtaxed immune system. Last night we had a bit of a scare when his breathing became difficult even with supplemental oxygen, and they were about to intubate when he somehow turned it around and stabilized. He now has a nasal tube giving him a very little bit of oxygen, and he is doing really well with it. They increased his pain medication; he had a good night of sleep; and this morning things looked better: steady breathing, less fluid retention, clear lungs, and some positive signs in his blood work that the mylotarg might be taking effect against the leukemia. But he is working tremendously hard and has a long way to go. The mylotarg lowers his white count, which will make it harder for him to fight these other issues, but unless we can check the leukemia, these other problems will only get worse. Julien is astoundingly strong and stubborn, and I have never been more grateful for those qualities in him. At noon today I held his head and asked that he receive all the love, prayers and healing energy being sent his way. Thank you for that, for him and for us. Matt and I are having a hard time and are scared out of our wits. I like that so many of you think we are brave, but there is no bravery in doing the only thing that feels possible, which is to cry, rage, hope, fear, pray (even I, of little faith, have taken up fervent prayer) and love our kids with all our hearts. Thank you all so much for the warm blankets of love you have thrown around our shoulders.

Monday, March 15, 2004 9:52 PM CST

Thursday, March 18.

Matt with a short update. I'm not going to try to imitate Naomi's writing but rather just spew some facts about Julien in a not very coherent order. Julien has developed some fluid in one of his lungs which caused some difficulty breathing. He is on supplemental oxygen and doing fine with it. He is now in the pediatric intensive care unit (PICU) where he gets some extra nursing attention. We are hoping that the fluid is being caused by a bacterial infection which can be treated by antibiotics. He still has positive tests for the viral stomach bug but he seems to be slowly getting over that. His leukemia cell count increased today but so did his healty baby white cell count. If his leukemia cells increase tomorrow, the doctors will give him another dose of the CD 33 antibody drug (mylotard). Julien will be in the PICU for 2-4 weeks while we try to resolve his fluid retention and see if the mylotard is working. We are sticking with Plan A until further notice.

Day 181. I was hoping I would never have to write this journal entry. Julien relapsed. On Saturday his routine blood sample showed leukemia cells for the first time since transplant. Sunday morning they did a bone marrow biopsy and found about 50 percent leukemia cells. I'm sorry we didn't post something sooner. The last two days have been among the hardest in our lives. We got more information from the biopsy today, and we've been talking quite a bit with our doctor here at Georgetown (Dr. Shad, whom we like a lot) and Dr. Kurtzberg to figure out what our options are at this point. The one good piece of news we got today is that some of the leukemia cells have a marker on them known as "CD33" for which there is an antibody. So Plan A is to take Julien off all immunosuppressant drugs (which they have done) which will allow what is left of his donor cells to attack the leukemia (the down side is that this also allows them to attack Julien in the form of graft versus host disease) and to give him the anitbody which will target those leukemia cells with the CD33 marker. The hope is that this dual approach will get him back into remission. If it looks like its working (which we should know in 2-3 weeks), Dr. Kurtzberg would then give Julien the last bit of cord blood that was reserved from his transplant to help the donor cells recover. It is hard to say what the odds of this plan working are; probably worse than 50/50 but certainly better than Plan B, which is to return to Duke for a second transplant, an option that would only give Julien about a 20-25 percent chance of making it and that this time would involve the terrible and lasting effects of radiation as well as the long, hard haul of transplant.

For the moment Julien is still in the hospital doing battle with the virus, which had a second wind. Once that is under control we may be able to keep Julien at home and continue the next stage of treatment in the clinic. We are taking this one step at a time, trying so hard not to drown in sadness and despair, and as always being kept afloat by Jake's playfulness, Julien's strength and the tenderness of them both.

Thursday, March 11, 2004 11:50 PM CST

Julien is still in the hospital but doing much better. He hasn't thrown up for a couple days and has started eating a little. If he can keep down some oral medication tomorrow, he may be able to come home this weekend. However, his white cell count is still very low (today it was .9) and his red blood cell and platelet counts have been bouncing around. This is still consistent with fighting the viral infection, but if his white count doesn't start to come up soon, the doctors want to do a bone marrow biopsy (probably next week) to see what is going on. I am trying very hard not to panic, and having occasional success.

Tuesday, March 9, 2004 9:30 PM CST

Tuesday evening update: Julien is doing better. We were up most of Monday night because he had a fever that topped 104 and that was unfazed by Tylenol and cold washcloths. They finally brought in a cooling blanket and that seemed to help. Today the fever is much lower and he is vomiting less, but he can't keep down any oral medications and his white count is still very low. Because he is neutropenic again he is being treated with a variety of medicines to prevent secondary infections. So far so good. He is very tired, but in his alert moments he is his usual charming self. We are just hoping that in the next couple days, as Julien begins to get a handle on the virus, that his white count starts to come up. Jake, for his part, appears to have adapted easily to his new school and still forgets that Julien is not at home. Tonight my dad asked Jake if he would like it if he brought up the guitar and sang a little at bedtime. Jake answered, "Oh, yes, and JJ will love it."

* * * * *

A quick update on Monday afternoon to let you know that Julien was admitted to Georgetown Hospital last night after a spectacular display of vomiting and diarrhea yesterday evening. That is the bad news. The good news, ironically enough, is that this afternoon he tested positive for rotovirus, the bug that Jake brought along from Durham. It is not pretty in someone with a low immune system, but it does go a long way to explaining his white blood cell count, which went up a little last night and then down again this morning. Julien will need to be in the hospital for the duration of the virus so that they can keep him hydrated and give him his various medications intravenously, since he can't keep them down. We are hoping that it will only be a few days, and that the virus is the only thing we need to worry about at the moment. Right now I am off to pick up Jake from his first official day of pre-K at Eaton Elemtary.

Thank you so much for the messages of love and support, they help us feel like we can swim.

* * * * *

Day 172. I mentioned before that Julien's white blood cell count has been low. The fact is that it has been slowly going down for about three weeks, starting around the time Dr. K reduced his GCSF, the IV medication that stimulates white blood cell growth. But this week it seems to have gone lower faster. Friday we took Julien in to meet Dr. Shad at Georgetown; she will be doing his follow-up care here. She was great, but Julien's white cell count was 1.2, which is about what it was when he left the hospital in November. I spoke with Dr. Kurtzberg Friday night and she thinks the most likely explanations are the reduced GCSF or a virus. However, one possible explanation is relapse. She has increased his GCSF and we'll check his counts again on Monday. If his white count isn't up on Monday she wants us to return to Durham for a bone marrow biopsy.

I haven't been this scared for months. It has been a little strange to be home, yet mostly nice. But I just don't care where I am right now. I only care that Julien is okay and that we don't have to confront the grim options available to us in the event of relapse. Julien seems so happy to be home, and I would give anything to make sure he gets to stay here. I read somewhere that sand dunes have the mysterious property of sometimes acting like a solid and sometimes like a liquid. Our lives feel like that right now; one minute the ground feels so reliably solid and sure and the next you are falling into the empty, liquidy depths.

Wednesday, March 3, 2004 11:19 PM CST

UPDATE: We made it back to DC and it is SO nice to be home. Julien spent the last hour of the trip saying "my dog" (which sounds very southern when he says it because it comes out more like "mah dah", and once he got here and kissed and hugged Roxie, he had no interest in the pizza party because he was so busy exploring all the long-lost toys. Jake hasn't been feeling well today and was pretty low-key, but he did manage to ask his Grandpa how water is made, how steam is made, how steam engines work, and the different functions of gases. I'm so tired, the house is a mess, and the kids aren't sleeping well, but it feels really nice to be home.

* * * *

It is Tuesday evening and if we can get the rest of the house packed up tonight and tomorrow morning, we should be in DC in time for a pizza party tomorrow night with Papa, Grandpa, Bubbie and our dog Roxie. Julien's white blood cell count has been pretty low the last few days, and we had done such a good job not getting our hearts set on leaving, that when Dr. Kurtzberg said it was fine to go, and on Wednesday no less, we were a little startled and unprepared. She thinks the low counts are just from a lowered dose of GCSF, a drug that stimulates cell growth. So now we are frantically disentangling our things from this place, and saying hasty goodbyes to some very wonderful people. We will be back in Durham in three weeks for Julien's six-month studies, which makes the abrupt departure a little more bearable for us.

I will post again this weekend and let you know how re-entry is going. In the meantime, please continue to keep Julien in your hearts and prayers. The chance of relapse decreases the farther out from transplant he gets, but it is most common around the six-month mark, which he'll hit two weeks from today. It is a hard fear to live with, but it is subdued by the luck and joy we feel at how well he is doing so far. Long before Julien got sick, I often said he was a lover and a fighter. It has never felt more true.

Thursday, February 26, 2004 0:57 AM CST

Day 162. It looks likely that we’ll be going home next Wednesday or Thursday! Matt and I are thrilled that Julien is well enough to return home, and we are so excited to be getting back, but it is odd how hard it is trying to get our heads around the idea. We have spent six months homesick for our dog, our friends, our house, the life we used to have, and now that we get to go back to it I am surprised by the trepidation and mixed emotions I feel. It is something I’ve been looking forward to for so long that it has become dreamlike and mythic, as only memory can make things. It is not just the time I have spent thinking about home, but the emotional distances we have traveled since we left Cathedral Avenue, and the depths out of which I have looked back at it with longing. I suppose it is dawning on me that the home we are returning to is not the home we left because we don’t get our old life back. Julien is still very ill; he still has a thirty percent chance of relapse; he still can’t go outside without a mask or play with other kids or eat dinner at a restaurant. And we are still living with the fear of losing him at the same time that we celebrate his growing strength and energy, his every new word, and his every new cell. We have also met many families here who have lost children, and the kind of grief we feel for them reminds me that even if Julien beats this, as we believe he will, we’ll never get to go back to a life in which that kind of heartache can only happen to other people.

It is not just what we are returning to that makes going home harder than I expected, but also what we are leaving. We have met extraordinary people here and been met with extraordinary kindnesses. We have experienced huge amounts of pain, but also surprising amounts of joy. We have had the strange luxury of being together as a family in a way that we would not have known but for Julien’s illness. There are aspects of our life here that I hope we can carry back to Washington: the focus, the emotional openness, the great expanses of time, the quiet, the keenness with which we need each other. Other things I’d like to bring home seem like more improbable candidates for removal, like the towering magnolia behind Martha’s house, Oval Park and all the kids who play there, and Dr. Kurtzberg.

Even though we don’t quite feel celebratory, we do feel lucky and excited to be going home, to have Matt’s parents down the street again, to have my dad downstairs again, to have a dog back in our bed (along with the two kids), and to see many of the friends who have been rooting for Julien and supporting us long distance. I am scared, but I have also been redoubling my efforts at distraction and amusement by burying myself in the extremes of high and low culture: 19th century fiction, 20th century poetry, reality television, e-bay and People Magazine. At some point I’ll probably need to try real instead of makeshift therapy.

Tuesday, February 17, 2004 11:08 PM CST

Day 154. So barring any bumps in the road, we should be heading back home sometime in the first week of March! We had our weekly meeting with Dr. Kurtzberg today and she would like to see us twice more, which would make March 2 our last meeting with her before we leave Durham. But because the road we are traveling is not the smoothest, we have to somehow plan for our return home in a couple weeks without getting our hearts too set on it. Nevertheless, we are getting close, and after two days of snowfall in Durham the thought of getting home in time for cherry blossoms is sweet indeed. And best of all, Julien continues to do well. His rash is improved, but stubborn. Dr. K says it may well come and go over the next few months, but as long as it is under control it is a good sign that his new lymphocytes are doing their job. Julien also continues to space out his blood transfusions (meaning that his new bone marrow is producing more of its own blood cells), but there too it may take many more months before he no longer needs them. Our only complaint is that the increased steroids Julien takes to deal with the GvHD also increase his irritability. When he and everyone else are doing exactly what he wants, he is happy and playful; but in the face of the slightest obstacle, it seems like the steroids shorten the distance between contentment and total discomposure, a distance that in two-year-olds is already pretty short. All things considered, I can’t tell you how lucky I feel that our biggest problem at the moment is Julien’s mood.

We had a lovely Valentines Day. Julien’s “best buddy” Cheryl Lynn came over with her roommate Courtney, and the two of them babysat the kids while Matt and I ran out for a quick dinner. It was a real treat. As if that weren’t romantic enough, Julien has been giving out lots of kisses and Jake told me that he wants to marry me so that he can stay in this family even after he is a grown-up. And best of all by far, last Friday our friends Paul and Ed were legally married in San Francisco City Hall. It has been a really good week.

Tuesday, February 10, 2004 11:14 PM CST

Day 147. We met with Drs. Kurtzberg and Staba today at clinic. Whether it has been a hard week for Julien or an easy week, it always makes me feel better to talk to either of these amazing women. Dr. K is Dr. K and she is nothing short of a miracle worker. She runs the best pediatric stem cell transplant program in the world (you’d be astounded how many people come here from other countries) and she answers e-mails and pages in about 10 minutes. She also happens to be warm, funny, and upbeat without being unrealistic. Dr. Staba (or Dr. Susan, as she is known to her many devoted patients), as I may or may not have previously mentioned, is a fellow with the pediatric stem cell transplant program at Duke. She has completed three years of pediatric residency, three years of a hemotology/oncology residency, and is spending a seventh year specializing in bone marrow transplant. And she is younger than me & Matt. She is so accomplished that she would be annoying if she weren’t so wonderful: really smart, engaged with the kids, engaged with their parents, deeply caring, and always available. Julien loves her. Even when he was in the depths of his in-patient depression, when he wouldn’t smile at anyone and would point people to the door the minute they entered, Dr. Susan was the only one who could get a wan smile or a half-hearted chuckle out of him. It would require her performing elaborate slapstick routines, but she always rose to the occasion and it almost always paid off. Those smiles she elicited helped get me through a couple of very dark weeks.

This week was pretty good. Julien still has the GvHD. It got better and then got worse again and Dr. Kurtzberg is fiddling with his various medications to see what balance works best on the rash. She still thinks we can get it under control without too much trouble. In other respects Julien is doing great. His counts were good this week and he appears to be gradually spacing out the time between both red blood cell and platelet transfusions. He is also active and feisty and happy. As my dad said tonight, despite Julien's clever disguise, he is his old self. Our boy is getting better! We may still be able to go home at the end of February, but we’ll just have to see how things go over the next couple weeks. Regardless of when we go home, we’ll need to be in Durham around March 16 (the 6-month mark since Julien’s transplant) for a series of tests. We are awfully lucky that Durham is only a 4-hour drive from DC.

This week has been nice in other respects as well. My dad came down and brought his guitar. Papa has been playing a lot of requests: Fox Went Out on a Windy Night, Froggy Went a Courtin’, Horse Named Bill, and at bedtime, Hush Little Baby. This is Julien’s favorite and he likes it sung over and over again. He also loves to point to himself and say “Baby!” During our endless car excursions, Julien always asks for the “boom boom” song, which is the first track from Paul Simon’s Graceland CD, The Boy in the Bubble (an eerily apt song renamed for its booming drums at the beginning). This album has a magnetic effect on children. During Jake’s first few colicky weeks of life, this album was one of the few things that would always calm him. And now it has new meaning for us, for as Julien himself seems to know, these are the days of miracles and wonder.

Wednesday, February 4, 2004 11:25 PM CST

Day 141. At our clinic visit yesterday Dr. Kurtzberg mercifully moved up the finish line a little for Julien. It now looks like we have a good shot at making it home to DC around the end of February! Normally, before letting kids leave the area, Dr. K likes them to no longer need blood transfusions, or to need them very rarely. They then schedule a surgery to take out their central lines and replace them with a port, which allows easier access to a vein but lies beneath the skin (with a port kids can take deeper baths, get in a swimming pool, and just move around more easily). Julien only needs red blood cell transfusions about once every two weeks but he still needs a platelet transfusion about every 4 days. Dr. K told us yesterday that if we can get the GvHD under control and his transfusions onto a fairly reliable schedule, he is otherwise healthy enough to go home in a few weeks. We would need to keep Julien’s lines in place so he can continue to get transfusions in DC, and we’d need to come back to Durham every 4-6 weeks instead of every 3 months, but we’d be home. She was not too concerned about the rash, which is the mildest form of GvHD, but she did increase his steroids and change a couple of medications to deal with it. One new medication he is now getting (with the pronouncable but unremarkable name of FK506) has the added benefit of not causing abundant hair growth like the drug it is replacing. In a couple months Julien should lose much of the fine brown fur that currently covers most of his face, earlobes, and back. His crescendo of eyebrows should diminish and his flamboyantly long eyelashes should return to normal. At the moment he looks a little like Snufflupagus (sp?) when you get up close. It is really exciting to think that we may be so close to coming home. It is also daunting. Taking care of Julien a mile away from the clinic and his amazing doctors is one thing; taking care of him 250 miles away is another. One thing I have learned during the last five months is not to set dates for Julien’s progress, and so I am not getting too attached to this idea, but I am letting it make me happy. We should have a better sense of things next week.

I think getting home will be therapeutic for all us. Unfortunately, I don’t think it will fundamentally change my children’s personalities, which are driving me and Matt around a bend recently. Julien has a crying fit if we pour plain water when he wants bubbly, if we won’t let him put on his pajamas to take his nap, if he can’t use the clean tablecloth as his third special blanket at bedtime. He is either frighteningly obsessive compulsive or he is two. Jake, for his part, hears nothing we say the first 59 times we say it, he goes limp if we ask him to move, he runs naked through the house singing a tuneless ditty if we ask him to get dressed. He saves the crying fits for moments when sleep deprivation makes his strategic thinking foggier and less creative. He has either been getting civil disobedience training on the side or he is four. They are both annoying us, except when they are so sweet to each other that they make us cry.

To the extent Matt and I are in a good mood it is because of Julien’s relative good health and our bathroom reading, which is Schott’s Original Miscellany, a petite and beguiling collection of lists and trivia dealing with things like the dueling code, iceberg classification, Shakespearean insults, the curious deaths of some Burmese kings and wine bottle nomenclature. Here is a sample from my favorite entry, nouns of assemblage: an exaltation of larks, a pontification of priests, a muster of peacocks, a drift of swine, a parliament of rooks & owls, a business of ferrets, a fall of woodcock, a nye of pheasants, a sounder of wild boar, a barren of mules, a murmuration of starlings, a wilderness of monkeys. As far as I am concerned that one list alone is found art, or a fistful of get-out-of-jail-free cards for the poets and songwriters out there.

Sunday, February 1, 2004 11:43 PM CST

Day 138. I quick update to post some snow photos, and to let you know that Julien has a bit of Graft versus Host Disease (GvHD), which occurs when the donor blood recognizes the host (Julien) as foreign and attacks. It has taken the classic form of a bumpy red rash all over his body. It is not a big problem if we can keep it under control, and we are slathering on creams and ointments to make sure we do. I am on my third miserable day of the flu. Luckily my cousin Josh came down to visit this weekend. The kids act like he is a rock star and were so diverted I was able to get 20 minutes at a stretch all to myself so I could lie down and feel pathetic. Jake continues to pepper us with questions about various religions, their holidays, and, of all things, nuns. He did inform us yesterday that he is Jewish, but that he likes to celebrate Hanukkah and Christmas. Matt continues to hold down our quarantined circus tent and remain healthy, fit and sane. It remains unclear to me how he does it.

* * *

Day 135. Durham has been covered in snow and ice for days and is only now beginning to thaw. The sledding has been excellent. Today was the first day that some schools reopened, and a good thing too, as Matt & I had resolved to drop Jake off at school regardless of whether it was open. The last 5 months have been enforced family togetherness, and that aspect of life here is mainly delightful, but 5 days crawling all over each other was just too much of a good thing.

We had our regular Tuesday meeting with Dr. Kurtzberg and things remain about the same. The good news is that in looking at a slide of Julien’s blood, she saw a few baby platelets, so we know that the donor cells have started to make some red blood cells and platelets. It doesn’t, however, tell us how long it will take for him to make enough to stabilize his counts without transfusions. Knowing Julien, it will take awhile. Other than his slow pace, Julien is doing great and is a real two-year-old again: impish, bossy and full of beans. On Tuesday we also said goodbye to a couple of wonderful families whose kids were in the hospital with Julien and who are heading home. Adler Edwards, who is 10 days older than Julien, is going back to Florida and the Trimpers are returning to Michigan. Both of these families have kept us company through this process and it will be sad not to see them in clinic, but we are so excited for them. When Julien was still in the hospital and we’d take him out into the hallway, he always wanted to go into Adler’s room and play and would cry big grievous tears when we told him he couldn’t. Jane and Jeff Trimper in particular have been a real inspiration to us. They have three children, all with Metachromatic Leukodystrophy (MLD), a genetic condition that causes the central nervous system to degenerate. Maddie and Sam, their two younger children, had bone marrow transplants a couple weeks after Julien. Their older son Max had his transplant a year ago. Max, Maddie and Sam are three of the most beautiful kids you’ll ever meet, and Jane has the world’s largest heart; with all that is going on with her children, she still keeps track of other people’s kids and supports other families. She has offered me plenty of comfort and encouragement along the way, and for that I will always be grateful. Their website is www.caringbridge.org/mi/trimpermld if you’d like to pay them a visit.

So last night was strange. At 11:45 pm I officially became my mother. I was cold enough that I went to bed wearing a wool sweater and a wool hat. It was classic Olivia and I knew that the process which I’d thought would be gradual and imperceptible was already complete. It turns out to be a pretty good deal for me. What I will henceforth lack in conventionality I should more than make up for in creativity and humor. As if that wasn’t enough for one night, at 3 a.m. Jake joined me in my sweat lodge of a bed and asked me what the Bible was. When I told him it was the Christians’ book about God, he asked what Christians were. So we launched into a theological discussion about the different religions, about how they are like different countries, and how each of them has a different book about God and different ways of honoring God. In the interests of full disclosure I also told him that some people think none of the religions is right and there is no God, and others think all the religions are right and believe in all the Gods. Jake said, “That’s really cool. There are so many choices, I choose no God.” I said that was okay. He was silent for awhile and I thought he’d fallen asleep, until he said, “Mommy, can I tell you something? Actually I believe in God.” I said that was okay too. And then he told me that he thought everybody should believe in God. When I asked him why, he just said, “Because it is important.” Then I asked him which God he believed in and he was silent again. And this time he was fast asleep.

Thursday, January 22, 2004 10:06 PM CST

Jan. 25, 2004

Matt here with a quick update. It snowed today in Durham -- at least 3 inches with freezing rain on top. Naomi went to NYC for approximately 18 hours for a 40th birthday party. As we crept toward the airport, with numerous cars spun-out on the side of the road, Jake chimed in with, "Mommy, are you nervous? This is bad weather for a flight." Needless to say, we got to the airport without incident; the flight left on time; and it arrived a few minutes early.

My parents came down for the weekend. Naomi and I actually went out to dinner on Saturday night (for about an hour). It's been so long since we have been out of the house at night together that we stared dumbly at each other and ate. The food made up nicely for the lack of company that we provided for each other (when in Durham, try the Magnolia Grill).

In addition to the ordinary act of babysitting, my parents have cooked, cleaned, read endlessly and had snowball fights with Jake. A snowball fight with Jake is a very particular thing. First, you have to make the snowballs for Jake and for yourself. Then you discuss who will throw first. After each throw, there is an evaluation of whether a "knockout" has occurred. With Jake as throwee, there have been no knockouts recorded. With Jake as thrower, the knockout rate is about 80 percent. The process of these snowball fights play a little too much into Jake's sense of perfectionism and rigidity; on the other hand, they do reflect Jake's flair for Old-World sensibilities, like a duel or the armies facing each other on the Plains of Abraham.

Julien continues his slow-but-steady progress from a medical perspective. He is zooming ahead in returning to being a little boy. He walks more and more by himself; he laughs like crazy; he has started dancing (he and Jake put on a farewell performance for Naomi); and he continues to delight in being the boss of everbody. He's a good boy.

* * *

This past Tuesday Julien had his long day at clinic and we had our weekly meeting with Drs. Kurtzberg and Staba. Julien is still doing well in his own slow, insistent way. His white blood cell count has hovered around 6.0 for the last week, they are confident that he is making progress on producing red blood cells, and they are still waiting for some sign of platelet production. These last two items are what continue to keep us in Durham. When Julien's new blood cells can reproduce themselves at a sustainable level, we will be free to go home. Dr. Kurtzberg thinks we are still a month or so away from returning to DC. The good news is that his immune function looks good. This will help him fight any returning leukemia. It also means that by the time we get back to DC, we can occasionally have children over to our house. This will revolutionize our family's social life, which has operated at a subsistence level for the last six months.

As many of you probably gathered from reading the guestbook, Tuesday was also my 38th birthday; it was a very happy one. I felt so light-hearted. My dear friends Nina and Lisa drove down to Durham on Sunday to take me shoe shopping and out to dinner (Julie, who is our head cheerleader and chief fundraiser, was lying on her couch in a sickly daze, and she was sorely missed). It is amazing what a pair of new shoes and the company of friends can do for the soul. Lisa bought me a pair of sassy red mules, high-heeled and pointy-toed, that make me feel like there is fun to be had. This is such an unfamiliar feeling that it makes me a little dizzy. Nina and Lisa also brought along our dog Roxie for a visit, which filled all four of us to the brim with contentment. We have all missed her terribly. Julien followed her from room to room yelling "Dah" and kissed her everytime he got close enough. Jake broke down sobbing when she had to leave. Matt and I just buried our hands in her fur and felt like we were home for a moment. Seeing Nina, Lisa and Roxie was a magnificent gift, but Jake and Julien gave me the most wonderful birthday presents of all. Jake painted a beautiful ceramic bowl and Julien started walking by himself.

The other day I read that astronomers have used the Hubble telescope to discover a mysterious energy they call "the dark force" because it causes all objects in the universe to move apart from each other at an accelerating rate. But I kept thinking that from where I sit, the forces of light look awfully strong, bringing us closer together on this beautiful speck of a planet through our commitments of love, care and interdependence. Your prayers for Julien and your messages to us reinforce my belief in the immense power of those commitments.

Thursday, January 15, 2004 9:57 PM CST

Day 121. We woke up this morning in our sweet house, pulled up the blinds and saw the sun rising through the magnolia tree in the back, the sky a translucent blue, and the clouds glowing golden around the edges. It was a beautiful sight and seemed to promise a good day. And it proved to be a lovely day. Julien felt strong and happy, and did a lot of walking and climbing on Jake. He even walked the length of the house without holding anyone's hand; actually he was holding hands with his new Sumatran Orangutan (thanks Huntley and Rob), but despite the ape's stage presence, we think he offered relatively little physical support. Julien also blew the shofar, played in the park with gusto, and drove around in the car a lot. (I've put new photos of some of the day's highlights in the photo album.) We celebrated the day by having a pizza party at dinner. We have discovered that while Jake gets very excited by having pizza, he gets even more excited when we call it a pizza party.

Medically Julien is also doing better. At clinic on Tuesday his white blood cell count was inching back up again, he was keeping the medicines down more often and Dr. Kurtzberg thought he was doing just fine. I specifically asked her if she could think of anything to justify my fears, and she said, bluntly yet sympathetically, "No. I'm sorry, but you are out there alone." And out here I am; less acutely fearful than I was last week, but vigilant nonetheless, as if my vigilance made any difference. It is usually just the wind in the trees, but to a guard dog it always sounds like the soft crunch of footsteps on fallen leaves.

I attribute the relative sanity of the other members of my family to the almost normal home environment we have here in Durham. It is a tribute not to me or Matt, but to four people you should know about, people of tremendous compassion and generosity. Three of these people we have never met. Martha Sorensen we know because she owns the house we live in, a house that is spare and lovely and deeply peaceful. Jake has asked if we can bring the house with us when it is time to go back to Washington. Martha agreed to rent the house to us through December while she was away (actually, in her gentle and perceptive way, she insisted that we rent it because she thought it would be a good place for us, and she was right). As the end of December neared and it became clear that we would need to stay on in Durham awhile longer, Martha's friend Erica Gringle mobilized her synagoge to find another place for us to stay. In response, Amy and Mark Newman offered part of their home. When Martha returned she decided to stay with the Newmans so that we could stay in her house, so we wouldn't have to uproot yet again, so we could stay close to the clinic, to Oval Park, and to the neighbors whose company and children we have grown so fond of. Martha's kindness has become so routine we are no longer surprised by it, but the kindness of strangers, as Blanche Duboise knew, always takes one's breath away. We haven't met Erica, Amy or Mark, but they have helped to steady us in an unsteady time, and the amazing Martha and her oasis of a house have kept us from feeling like the castaways we are.

Sunday, January 11, 2004 11:08 PM CST

Day 117. Six months ago, on the morning of July 11, Julien had his second bone marrow biopsy. He was diagnosed with Acute Myeloid Leukemia that afternoon, and by that evening was admitted to Children’s Hospital in DC to begin intensive chemotherapy. He came home from Children’s on August 15 and 10 days later we moved the family to Durham to prepare for Julien’s bone marrow transplant. It has been a long six months spent in a world of illness that I was only dimly aware of before. Today for some reason I am feeling the exhaustion keenly and it feels like six years since that hot DC day when this nightmare officially began. The fatigue and fear come and go, and they usually come on strong when Julien hits a rough patch. This past week has felt hard. In general, his 100 Day studies have gone well: his blood work, lung function, chest x-rays and echocardiogram are all consistent with pre-transplant testing. But a bunch of small things have conspired to unnerve me. Julien’s white blood cell count continues to dip and climb and dip, he has begun to throw up his oral medications, he has not made much progress in making red blood cells or platelets in the last couple weeks, he hardly eats, and now he has diarrhea. In addition, his most recent DNA test showed 97 percent donor cells in his peripheral blood (compared with 99 percent at last check). Now, you all should know that the doctors are not concerned about any of this. They think he is doing just fine and that I am a little crazy (the truth is I'm mad as a hatter these days). The vomiting, diarrhea and loss of appetite could be a minor virus, a little bit of graft vs. host disease, or just the effect of tapering off the steroids. None of these is alarming. And Dr. Kurtzberg assures us that the DNA test tends to fluctuate and she is okay with anything above 90 percent. But my fear of relapse is so present and so powerful that reason only goes so far with it. Even if only 3 percent of his blood cells are his original pre-transplant cells and they are vastly outnumbered by healthy and unfriendly donor cells, it is a toehold that scares me to death. I constantly remind myself how well he is doing overall; but of course, nothing about his recovery prevents relapse, which could occur at any time. It is a fear that we will have to live with for another year or so, if we are lucky.

Within this large and terrible journey are always the smaller absurdist adventures of life with young children. Yesterday, for example, we spent the morning following a municipal garbage truck around town. It was a big white one that excited Julien no end when it drove by us. We had stopped to get lattes, and when Matt came back with the coffee we went in search of the big white whale of garbage. There was snow on the ground and it was bitter cold, so it seemed like a fine way to pass a Saturday morning. It didn’t take long to spot the truck lumbering along a few blocks away. We followed it for long enough that we finally felt compelled to explain ourselves, so we pulled up beside it, rolled down the window, and informed the driver that we were indeed following him—for the love of garbage. Little boys are strange creatures who almost uniformly have an inexplicable fascination with trucks. Luckily most outgrow it before they are 3. Jake, to his credit, was wondering why we were spending the morning following a garbage truck, and why we seemed to be enjoying ourselves so much. The four of us spend a lot of time in the car together, especially now that it has gotten cold. Julien loves to go for drives and he likes everyone to be in the car with him. So the whole family makes the 20 minute drive to Jake’s school in the morning and again in the afternoon. Often we have no destination, and nothing better to do. So we have gotten a good look at Durham and its run-down sweetness, the unkempt clapboard houses full of students, the squat brick houses full of working families, the many churches, the abandoned tobacco factories, the desolate downtown, and its beloved baseball stadiums, old and new.

Monday, January 5, 2004 10:59 PM CST

Day 111. Thus far 2004 has been grand. Julien is blossoming. He is so much more like himself now: he laughs like crazy, he has more energy, he plays, he bosses everyone around, and he is aware of everything that is going on around him (much more so than Jake, who tends to be absorbed by the explosive narratives of his own imagination). He still insists that someone hold his hand when he walks, but he is much stronger and physically adventurous than he was even a week ago. The unseasonably balmy weather here has helped as well; the kids can play soccer on the back patio, go on walks, and cavort with the kids next door (Julien has to wear a mask and keep his distance, but stares in awe and anticipation at the boisterous activity). We have great neighbors with many kids and they are kind enough to leave their toys in the front yard, so when they aren’t around we can take Julien and a bucket of antibacterial wipes and let him play on the trikes and the trampoline. We also had a really nice visit with Matt’s parents this past weekend and we all took an excursion to the little lake in Duke Gardens to feed the ducks. Julien even got to take his mask off for a juice box and a photo op. This week he starts his Day 100 studies to get a sense of his overall health relative to how he was pre-transplant. So we’ll have more medical information later this week. In the meantime we are in a holding pattern, trying to stay well and waiting for Julien to make more of his own red blood cells and platelets. It still looks like we’ll be in Durham for another 4-6 weeks.

We spent a lovely New Year’s eve drinking wine with John Darnielle and his wife Lalitree. John is a friend from high school who I haven’t seen for many years and who just moved to Durham (and not a moment too soon as far as Matt & I are concerned). He is also, as the genius behind the Mountain Goats, well on his was to becoming an Indie rock star (if you don’t know what I’m talking about, go to your local music store and find out; the stuff is great, full of poetry and apocalyptic good humor). And New Year’s day was wonderful mainly because it felt so ordinary. We stayed in our pajamas half the day, watched the rose parade, read some of Swiss Family Robinson, Julien walked up and down our street, and I made Hoppin’ John, a traditional southern New Years dish that is supposed to bring good luck. Made with one part bacon and one part black eyed peas, you need good luck to make it through the year without clogged arteries.

On December 31 I was explaining new years to Jake, telling him that when you go to bed on the last night of December, you wake up the next morning and it is the first day of January and a new year. He thought about it for a while, and then asked what the new year was called. I told him 2004. He didn’t care for that answer. No, he said, what is its name? I said that its name was 2004. Still unacceptable; he was starting to get frustrated with me. Not its number, its name, what is its NAME?! At this point I sensed that we were having a metaphysical conversation in which I was out of my depth. I groped for a response that did not convey my sudden and cliche disappointment with the lack of imagination with which we westerners approach time. I told him that in America we don’t give the new year a name, but that in China each year has the name of an animal. He liked that a lot, but of course he wasn’t truly satisfied until Sam Deese told us it was the Year of the Monkey. The new year had a name.

During my New Years ruminations I have been tempted to dismiss last year in its entirety as a lousy, painful year, to curse it as it seems to have cursed us. But that would not be fair; it would not do justice to the pleasures salvaged from its meanness or to the gifts it has offered us. Julien spent three months of 2003 in the hospital and has been through an unimaginable ordeal; the rest of us struggle along beside him trying not to drown in our own fear and sadness. But the fact of the matter is that Julien’s treatment and his doctors (especially the amazing Dr. Kurtzberg) have given him a good chance at a long and healthy life, a chance that would not have been available to him 15 years ago. They have given the rest of us hope. We have also been the recipients of more love and compassion than we knew existed. For these things we will always be grateful. And 2003 gave me and Matt the more dubious and often painful gift of greater self knowledge. Although many of the lessons of the last six months remain opaque, we know a little better what we are made of and what we aren’t. We have come face to face with our many weaknesses and with fundamental human frailty. We have also discovered in ourselves and in others deep reserves of strength and joy. I was not surprised to read recently that the Hindu god Ganesha is the god of obstacles as well as the god of wisdom and learning. (Incidently, Ganesha was also a transplant recipient. As a boy, his head was cut off but he was given an elephant's head and survived.) Having settled the question of the new year’s name, we are left to wonder what the Year of the Monkey has in store for us, and we hope and pray that the screeching and howling are cries of happiness and celebration.

Tuesday, December 30, 2003 4:45 PM CST

Day 105 and a quick update. We are home from our Tuesday clinic visit, which was thankfully shorter than usual. The follow-up CMV tests have been negative and his white blood cell count stabilized (it was 3.5 today), so it looks like everything is fine. Dr. Kurtzberg thinks the dip was probably just part of the normal fluctuation, and she is pleased with his progress in other respects. He is starting to show signs of making his own red blood cells, he is spacing out his platelet transfusions little by little, and is recovering his spunk. So we are all relieved for the time being, but I'm prepared to be alarmed at a moment's notice. As my mom said, I am the guard dog. We are wishing for you all what we are wishing for ourselves, a new year filled with health, happiness, peace, ease and grace.

* * *

Day 103 and Julien's Second Birthday!

We had a wonderful and celebratory day here, and it began with Julien giving me a big smacking kiss when he woke up. A few days ago Jake took charge of the party planning, and the cake planning in particular. He decided that Julien would like to have a Maisy birthday party, and that he would like a cake that was half white and half strawberry with chocolate frosting (I entertained myself by adding raspberry to the frosting and fashioning the cake in the shape of a 2). Yesterday Jake told me that the cake should read: "JJ, this is your birthday cake. It is beautiful. I love your cake. And I love you too." Like so many writers, the fullness of his expression was squelched by space constraints, so we settled on "We love you Julien." (Jake also decided to plan his next birthday cake at the same time, and next July he would like a cake that reads: "This is a Buzz Lightyear cake. And I love my cake. Dear Cake. Thank you Mommy for making it.") Also the party store didn't have Maisy merchandise, so we went with Thomas the Tank Engine, which nonetheless delighted Julien. Julien seemed pretty delighted by the whole thing, especially blowing out the candles, which he did five or six times. My dad and Matt's parents and brother were here with us, which added considerably to the revelry. It has been unseasonably mild this weekend, and this evening we took a slow walk around our neighborhood. The moon was coming up and Julien pointed up at it and said, "Mon!"

The ordinary and extraordinary joys of celebrating Julien's birthday have been superimposed on our anxiety about his health. Over the last few days his white blood cell count dropped from 5.8 to 3.2 and on Friday the doctors called to say that he tested positive in a routine screening for cytomegalovirus (CMV), a virus that lies dormant in many people but which can cause infection in the immuno-compromised. CMV is treatable if it is not too severe. Given the alternatives, Matt and I are in the odd position of hoping that it is CMV which is causing his counts to drop (Dr. Kurtzberg says counts can also drop that much in the course of normal fluctuation, but given Julien's methodical cell growth, this feels different). Yesterday they drew blood for a culture, and we should have more reliable results Monday evening. We'll update the site as soon as we hear anything. In the meantime we are trying to banish our fears and are dreaming about the blow out we are going to have when Julien turns three.

Tuesday, December 23, 2003 11:16 PM CST

Day 98 Update: Julien had a long day at the clinic today getting red blood cell and platelet transfusions. The one piece of disappointing news is that the doctors don't think Julien will be ready to go home at the end of January. They want us to stay around until he no longer needs blood transfusions, and Julien continues to stick to his own schedule. The news caught me off guard and left me incredibly sad and homesick. The well of sadness is so deep these days that if I take the smallest dip I risk drowning in it. But despite missing our dog Roxie and our friends and jobs, the fact of the matter is that home is wherever we are together, and we are lucky to have it with us here. And best of all, nothing about Julien's insistence on going slow has any medical repercussions. The doctors think he is doing just fine. Starting tomorrow he'll only be on one IV medication, and sometime in the first week of 2004 he should be off steroids completely.

Wherever you are, we hope you find yourself at home and at peace this Christmas.

* * *

Day 94, the first night of Hannukah, and Julien continues to make his slow but steady progress. Yesterday his white blood cell count was 5.3, low for someone 94 days past transplant who takes drugs to stimulate cell growth, but in the normal range finally. He is still easily tired and easily cranky, but he is quick to laugh and consistently exhibits a real desire to be stronger, to play with Jake, and to be driven around in the car. He also turns out to have a near-tyrannical instinct for equity. He insists that everyone at the table has the same thing to eat that he has. If you politely decline, he insists more vehemently. If you still refuse, he dissolves into tears. So we tend to sample many toddler delicacies that I would have never allowed even four months ago, such as avocado with ketchup, teddy grahams with ketchup, goldfish with ketchup, cheese with cream cheese on top, and straight butter. Our parenting has become so compromised that we now sometimes allow the kids to watch videos during breakfast and Julien to use four fingers to eat cream cheese straight out of the container.

It was a quiet but lovely day here. At one point I looked up and saw snow falling steadily out the window. The image took me so completely by surprise and was so delightful, that it made me feel suddenly happy and hopeful. In five minutes the snow was over and the afternoon became sharp and sunny. Sarah Kaplan is visiting and she helped us make potato latkes and light the first candle tonight. Jake has been playing dreidel like crazy. It feels especially good to be celebrating Hannukah this year because the holiday commemorates the courage of one's convictions, the power of a group of people to recreate what has been destroyed, and most importantly, it celebrates miracles. And like Michaelmas before it and Christmas after, it reminds us to use light to help cast out the darkness inside and out.

Happy Hannukah.

Sunday, December 14, 2003 8:22 PM CST

Day 89. It is easy to forget in the face of the immediate needs of a very sick child how much both of our children are continuing to grow and change in delightfully normal ways. Not only is Julien recovering some of the abilities he lost in the hospital, but two weeks away from his second birthday he is also learning new ones. One thing that Julien and Jake are discovering together these days is how to be brothers. They have not lived together much since Julien went into the hospital in DC to begin chemo on July 11, the day after Jake's fourth birthday. Jake now has a growing sense of himself as a big brother, a role that he interprets as part caretaker and part playmate. If Julien cries when we try to give him medicine, Jake tells us to "stop torturing him." He shares toys. He gives Julien endless kisses, tickles his plump cheeks, and carefully explains to visitors that "Julien has a fat head and a mustache from the medicine." Julien for his part wants Jake to be with him and do what he is doing from the moment he wakes up until he goes to bed at night. Each morning Julien wimpers and points to Jake's chair until Jake is seated at the breakfast table with him; he insists that we give Jake every food we give him; he asks for Jake the whole time Jake is at school; and he waits at the window when I say that Jake will be home soon. Jake and his goofy antics have breathed life back into Julien, who loves nothing more and never laughs so readily as when Jake is jumping around, falling down, and louding telling endless stories without punctuation. This weekend in particular, Julien seemed happier and more energetic than he has been since coming home (I have posted photos from this weekend in the photo album). He wimpered less and laughed more. He played for longer and has reclaimed some of his sense of humor, which like Jake's finds slapstick riotous.

We've had two really lovely weekends. Last weekend Jake's godfather Ed was here from California, and this weekend Matt's parents and my cousin Josh came down from DC. And in between the four of us spent almost five days alone together. It was the longest we have been without visitors since we arrived in Durham at the end of August, and while it was hard work, it felt almost like normal life, and to feel like normal life these days is also to feel miraculous.

Sunday, December 7, 2003 9:42 PM CST

Day 82. I'm not sure we'll keep this website going until Julien chooses his college major, but we are not closing up shop anytime soon because 1) we have a long way to go still, and 2) at this point neither Matt nor I could get through it without the messages of love and support you leave in the guestbook. I have said it before, but it is worth saying again how much this virtual community means to us, how much less lonely it makes us, and how touched we are that so many of you are rooting for Julien and keeping all four of us in your hearts.

Matt and I have been thinking a lot lately about how the last six months have been, for us, a season of receiving. We have been given so much by so many. The surplus of indebtedness and gratitude is not always comfortable; it has taken some effort to accept so much (especially when our ability to write thank you notes is so limited). I could not begin to detail every gift from every corner--it would be a litany of unbearable length--but I want to mention a few things because I want you to know how the world looks from our eyes: it is filled with love from friends and strangers alike, good will, unexpected compassion, deep reservoirs of kindness, mountains of generosity, nurses who works twelve hour shifts and are amazing at their jobs for every minute of them, brilliant doctors you can reach day or night, parents of sick children who care how your sick child is doing, every possible size of molded plastic dinasaurs and grace. We are so thankful for everything, but the biggest gifts of all have come from our employers. Judy Areen and Georgetown Law Center and Bob Luskin and Patton Boggs have gone far, far beyond kindess and company policy. Both Judy and Bob have made sure that our jobs are the last things Matt and I have to worry about right now. They have given us the time and salary to allow us both to care for Julien full time and to be together as a family. We have seen enough of what other families have to do to get through this to appreciate what incredible gifts those are. As if that weren't enough, the indefatigable Julie O. has roped many of my colleagues at Georgetown into contributing to a "comfort fund" for us that allows us to order in big platters of great food, get massages, and hire a housecleaner without worrying about the extra expense. Our friends and family have organized bone marrow drives for Julien; they have come from all over the country to visit, help, and cheer us; they have sent pears, pajamas, gift baskets, BBQ ribs, chocolate, wine, toys, cookies, cards, prayers, and after all this we continue to be met with unexpected and unprecedented acts of generosity (here Suzanne and Thompson take the cake). Mitu disguised his gifts as rent. My former student Phil Bower ran the Marine Corps Marathon for Julien (and the Araby Bog!). Our parents in particular have taken such loving care of us. We are grateful beyond description. And still people ask what they can do, and with BBQ sauce and cookie crumbs on our faces we stare at them blankly. There is only so much you can receive.

So with Hannukah, Christmas, Jane Austen's 228th birthday and Julien's second birthday all falling in December, I am going to take the bold step of telling you what you can do for us. If you don't normally send us holiday and birthday gifts, please don't start now! If you normally do, we hope you might consider an alternative: giving a small contribution in Julien's name to the Duke Pediatric Bone Marrow Transplant Family Support Program. We have met many people during our time at Duke who have befriended us and made us appreciate our great good fortune. Gilma Bonilla spent every day and night in the hospital with her daughter Varinia, she wasn't able to see her son Elvis for most of that time, and her husband remained in New Jersey to work. Varinia is out of the hospital now and doing well, but they are still trying to piece together the astronomical medical expsenses. We met Tommy Bennett, the youngest of three siblings with Sanfilipo Syndrome, a genetic, metabolic disorder for which there is no cure. Kids with Sanfilipo don't ususally live past age 10-12 and a bone marrow transplant is still an experimental treatment. Tommy was the only one of his siblings healthy enough to be eligible for a transplant. We met his incredibly strong and kind parents Alicia and John, his brother Hunter and his sister Ciara. Tommy died just last week after three bone marrow transplants and a year in and out of the hospital (his webiste is www.caringbridge.org/ca/bennettboys and the Los Angeles Times and Sacramento Bee have run stories on Tommy's journey). These families and others have touched our lives and we would be so appreciative if you could turn even just a little of your love and support their way. The nice thing about the Family Support Program is that in addition to many services and programs that benefit all the families with children going through a bone marrow transplant at Duke, they also provide financial help to the families who most need it. I believe you can even ask that your contribution be directed at assisting families with extraorinary financial need. A contribution to one of these families or to the Family Support Program would mean a lot to us because we can't afford to donate much right now ourselves and it would make us feel like we were contributing to helping others rather than just receiving help ourselves. If you are interested in doing this and would like more information, their website is www.cancer.duke.edu/PBMT/support.asp and Sarah Kaplan has also posted their address in the guestbook.

Again, please do not feel in the least compelled to contribute to anything. It is only if you were already planning on refreshing our abundant supply of dinosaurs or Buzz merchandise, that we ask you to consider this request. Do feel compelled however to continue sending positive thoughts and prayers of any faith; they keep us going.

Tuesday, December 2, 2003 11:47 PM CST

Day 77. Enough of you have told me now that Julien actually looks much more like Don Zimmer than Tommy Lasorda, that I officially stand corrected. Although, just to add to the indignities he must suffer, Julien is growing a mustache and dark eyebrows as a result of being on cyclosporine for so long. So now he looks like Don Zimmer in Groucho Marx glasses. But my beautiful son is every day just a little more present and perceptible as his personality slowly begins to reemerge. He is tender, insistant, playful, stubborn, and incredibly strong. Today we met with Dr. Kurtzberg, who says he is doing really well. They lowered his dose of steroids again and he should be weaned completely in four weeks; it takes another couple months after that for the rotund belly and cheeks to deflate and for his thigh muscles to build back their strength. Dr. Kurtzberg also told us that although Day 100 (when, on average, BMT patients can leave Durham) falls on December 25 in Julien's case, we should probably expect to be here until late January if all goes smoothly. She would like to see Julien's new bone marrow producing platelets before he goes home (so that he no longer needs platelet transfusions). Platelets are not only the last of the blood cells to come in, but Dr. K suspects that based on Julien's particular form of leukemia, his bone marrow environment will make platelet production a little slower. His white blood cell count was 4.0 today and his ANC 3,120.

I am exhausted, physically and emotionally. I am also, to the best of my abilities right now, happy. But fear flaps around the edges of my happiness, and I imagine it will until next September, when, a year out from transplant, Julien's chance of relapse becomes much more remote. Until then part of me will be clutching tightly at everything, or nothing. I remember a performance long ago by my friend Dominique Dibbell in which she described her heart as a clenched fist. Despite all the good news, or maybe because of it, that is how mine feels, and I am terrified of prying its fingers open and surrendering to the unknowable future. I suppose it is a weird combination of superstition and hubris to think that if you relax for a second, everything will fall apart.

On Sunday Matt turned 38, and we celebrated his birhtday as we usually do, with high spirits and bad Chinese food (Matt always chooses his birthday to try a new restaurant; just one way in which he is much better at surrender than I am). There were two especially nice things about that dinner: Julien ate a mountain of chicken with cashews, and Matt's fortune cookie said, "You will be sharing great news with all the people you love." Stay tuned.

Friday, November 28, 2003 9:34 PM CST

Day 73. A belated but very happy Thanksgiving. Everyday has been thanksgiving since Julien came home from the hospital, so the holiday felt a bit like surplus. But I think we rose to the occasion. It was a very lovely and very Mezey Thanksgiving. My mom and dad and Judah and Teel were all here with us, and we each managed to fulfill our traditional holiday roles. My dad made it through Richard Wilbur's collected poems; my mom kept the kids happy, planned elaborate and unrealistic additions to the menu up until the last moment, and kept us amused with the story of her first exorcism; Matt and I began to get sick (I was irritable; he was stoic); Judah and Teel were competent and loving--they got the food on the table, kept the house clean and ran errands; Julien cried through the first 20 minutes of dinner because he would have rather been nursing; and Jake kept dropping his trousers because, as he put it, he just liked to see his penis. All in all it was a highly successful Thanksgiving, complete with a glowing, grateful and tasty dinner.

Julien is doing great. It is hard to see any daily progress, but looking back over the last 10 days he has made great strides. He takes out legos and play dough to play with, he giggles a little more often, he wants to look at books and watch telatubbies, he has taken a few steps on his own, and is growing ever steadier on his feet. He is beginning to get back the very limited vocabulary he had when he went into the hospital (his version of "boob" sounds a lot like "bong"). He still takes a very Capricorn approach to speaking. On the cellular level he is doing wonderfully: his white blood count was 3.0 today and his ANC was 2,490. We are truly grateful and hopeful these days.

Tuesday, November 25, 2003 8:52 PM CST

Day T 70.

Julien continues his slow-but-steady progress. The doctors have reduced his steroids by another 10 percent and have taken him off another antibiotic. Starting tomorrow he will be going to the clinic every other day instead of every day. Preparing and giving all of the infusions and oral medications still takes a lot of time and attention (did you give him the vacomiacin or the verconizole?) but at least the whole process is shorter.

Over the weekend, Jake and I went to see the UNC women's basketball team play Hofstra with Dave, Sally, Terra and Hayden Swanson. The women play in Carmichael Auditorium, the predecessor to the "Dean Dome." All the UNC greats from Phil Ford to Michael Jordan played in Carmichael. It's amazing how small a place it is -- it's like an oversized high school gym (for the basketball arena geeks out there, it's bigger than McDonough but smaller than University Hall). Jake liked the game except the pep band was too loud for him. I liked the game except for the bitter taste in my mouth from sitting in the arena where Maryland lost so many big games (if you haven't guessed by now, it's Matt writing). UNC won by 47 points.

Jake is now sick with an ear infection. In one sense, it's comforting to deal with a mundane childhood illness; however, it's nerve-racking trying to make sure that Julien does not get infected. Jake is being very understanding about Julien not getting sick and I think it's doing Jake some good to have medicine to take too.

Saturday, November 22, 2003 7:32 PM CST

Day 67. We are starting to get the hang of the enormous task of medicating Julien each morning and evening (the little plastic drawers from K-Mart help a lot) and the meticulousness required is even rather satisfying. It has helped so much that my mother has been stranded here trying to get stabilized on blood thinners; it takes all three of us working full time to get through the day. What feels most overwhelming at the moment is the joy and gratitude we feel at having him home. The pleasure of sitting down to eat together and getting the boys ready for bed together is indescribable. It took so much stamina to live apart; the mile between our house and the hospital sometimes felt like the light years of dark space between planets. The hardest part right now for me is not the constant threat of illness, infection or relapse, but the difference between the joyful, impish boy who went into the hospital and the swollen and suffering one who came out. The fact of the matter is, Julien is sometimes hard to recognize. For one, he looks like the manager of a major league baseball team. Also, he had just begun to run when he went into the hospital, in that way of 18-month-olds who simply fling themselves into the space in front of them. Now he can't walk without holding onto someone's hand, he cries when we make him do it, and he is exhausted by walking the length of the small house we rent. He still doesn't smile or laugh much. When I praised Jake the other day for being such a good big brother and for making Julien so happy, Jake said, "But he just stares at me." I think even Jake misses the biting and hair pulling that he suffered on a daily basis only two months ago. Although if anyone can make Julien happy or engaged it is Jake. We were all so ecstatic tonight to see Julien laughing out loud when Jake hit me over the head with a sword that I let Jake do it over and over again (I am sure to rue this at some point). There are moments of authentic Julien: he launched a successful raid on Jake's beloved D-Doggy; he occasionally pulls off my glasses and giggles; he is insistent on everything being just as he wants it (shoes off, sweater on, Jake in his car seat, my breasts at his command). But he is also exhausted, depressed, and easily frustrated. They say it takes months, sometimes many months, for kids to look and act like themselves again.

Jake has been marvelous: sweet and tender with Julien, eager to help us give him his medicines, and surprisingly understanding of the demands Julien makes on our time and attention. Again, my mother has been hugely helpful in this respect. Bobby's comment about Jake having the poetic gift of his grandfather made me start thinking how much Jake takes after both of his grandfathers: he is both poet and scientist. He is enchanted by language; he thinks rhymes are the highest form of humor (he has been taken with a Fountains of Wayne song, and sings, "If you come back to Hackensack" over and over). At the same time he is rational and endlessly curious, and loves nothing more than science experiments. He and my mother have been recreating every experiment in the Magic School Bus series, to Jake's utter delight. But then poets and scientists are not really so different; they both dive deep into the mysteries of life in the hope of clarifying the smallest and most significant of details. They just choose different crafts for exploring those depths.

Wednesday, November 19, 2003 7:06 PM CST

Day 64 and reporting from home:
In addition to our feelings of profound graditude and good fortune at having Julien at home, Matt and I have spent the last 36 hours deepening our appreciation for how much the nurses did for us while Julien was in the hospital. We are overwhelmed by the amount of work it takes to care for him. As Matt said this morning, we've gone from prison to house arrest. The quiet lethargy and despair of the hospital has been replaced with chaos and hopeful panic. Jake stayed home from school today as we tried to get familiar with our new roles as apothocaries and oncology nurses; Jake makes a good nurse's aide, pushing in saline flushes and pressing the start button on the pumps that control Julien's IV medications. Last night, after it took us four and a half hours to finish giving Julien all his medications, after both boys stayed up far past their bedtimes, and on the outer edge of exhaustion myself, I came into the kitchen to find the towering heeps of crap that we'd carted home from the hospital, the numerous boxes of medical supplies, and the wilted remnants of dinner, and I almost lost it. I almost wanted to check into the hospital myself so that I wouldn't be responsible for my own care, let alone anyone else's. But I had a glass of wine and proceeded to organize like the type A personality I am, and today things seem a little more manageable. In what is probably a futile effort to salvage moments of comedy from an experience that hovers around tragedy, I have created a Mezey's Index of Julien's Recovery and Life in Durham.

Average number of days to bone marrow engraftment: 24
Number of days it took Julien to engraft: 59
Average number of days spent in the hospital for BMT: 50
Number of days Julien spent in the hospital for BMT: 73
Number of oral medications Julien takes each morning: 4
Number of oral medications Julien takes each evening: 8
Number of Flintstone vitamins Julien takes each day: 1
Number of IV medications Julien takes each morning: 6
Number of IV medications Julien takes each evening: 6
Number of pumps it takes to infuse the IV medications: 3
Number of hours it takes for each infusion of IV meds: 4-5
Number of syringes used to administer the IV meds: 18
Number of alcohol swabs used to administer IV meds: 18
Percentage of day Julien spends nursing: 45
Percentage of day Julien would like to spend nursing: 95
Percentage of day Naomi would like to spend nursing: 5
Number of avocados Jake consumes each week: 3
Ounces of millet Jake consumes each week: 0
Number of Buzz Lightyear items in our home: about 15
Number of tornados expected near Durham tonight: 1

Tuesday, November 18, 2003 9:28 AM CST

Day 63 (I think). Julien is coming home (home to Durham that is) today!! We were a bit surprised to learn this yesterday and are now slightly crazed trying to pack up all the stuff that has accumulated in the hospital room, fill prescriptions for the hundreds of medications he'll continue to be on, and make sure the house we are renting is dust-free, virus-free, and fungus-free. I am learning a lot about where dirt and mold collect in houses (air and heating ducts; ours will soon be spotless) and the best way to stay healthy (wash your hands like Lady Macbeth; we do, and if you tend at all toward the compulsive it can be quite satisfying). There is lot to do, but we are doing it joyfully. Last night we told Jake that Julien was coming home from the hospital today and he said, "We have to have a grateful dinner, a Thanksgiving." Tonight, you can be sure, we will have a most thankful Thanksgiving.

Sunday, November 16, 2003 11:25 AM CST

Day 62.

Matt here with a quick upate. Julien's WBC is 1.1 today and his ANC is 770 (is he going to hit every tenth on WBC count?). Jake and I had a two-day pass to Washington. Jake went to Lucas' birthday party, ate at some favorite restaurants and played at his old playground with Papa. I had a long walk and lots of play time with Roxie. It does the soul good.

Day 61 and a triple! His WBC count was 1.0 and his ANC 760 this morning, the two month anniversary of his transplant. He is now officially engrafted and it continues to look like he'll be able to come home this Tuesday or Wednesday. He was feeling perky enough this morning that he flipped through People Magazine for 15 minutes; he even held his fingers gingerly splayed as if the nail polish were still drying.

* * *

Day 60 (I reacquainted myself with the calendar) and Julien's WBC count was 1.0 and his ANC 660 this morning! Two days in a row above 500 is making us proud. Thank you for your joy and encouragement; we also can't wait to be back in the loving clutches of our friends again.

* * *

I can't for the life of me remember what day it is (either in Julien time or on Planet Earth) but I have wonderful news. Today his WBC was 1.0 (whole numbers!) and his ANC 730, but better still, we found out about 20 minutes ago that he has 99 percent donor cells. We are thrilled. Alongside the thrill is also tension, about the transition out of the hospital, about the future. I have to confess that there is a sizable nugget of fear that keeps me from fully embracing the good news that we have been getting, because even after a successful transplant Julien faces a 30 percent chance of relapse (while frightening, this figure is much better than the prognosis we got from the doctors at Childrens Hospital in DC who gave him a 30 percent chance of "overall survival," which partly explains why we are at Duke). If ever there was a time to abide the advice to take things one day at a time, it is now. There is so much to be happy for. Julien had a three hour pass yesterday and we all went for a drive and then brought him home for dinner. Jake was tickling and kissing him like crazy, and reintroducing him to all their toys. It was the sweetest thing I've seen in a long time. Julien seemed stunned by the whole thing, and was quickly tired (although the fishing poles and magnetic fish that Danny O. sent Jake animated him for a few minutes). Jake's singing also got him to smile. I was overwhelmed. Just having both of the kids' car seats in the car made me cry; it wasn't until Julien's car seat was buckled into place that I realized how incredibly painful its absence had been.

Thursday, November 13, 2003 8:46 AM CST

Day 58. True to his own strange timeline, Julien somehow managed to get his ANC below 500 today after going above 600 yesterday. His White Blood Cell count was still .8 and the ANC 480. But Dr. Kurtzberg stopped by yesterday and said that while they look for three days with an ANC over 500 because that is the standardized definition of engraftment, she is confident that Julien has engrafted. That confidence is enormously reassuring as he hangs out at his current plateau and defies the conventional definitions (so long as it doesn't delay his coming home). The outings this week have been really nice for Julien. He cries when we make him get out of bed, and he cries when he has to return to his room afterward, but once out in the world he stares at everything as if he has never seen such amazing things before. On Tuesday we all took a long walk together and Jake pushed Julien's stroller. We saw two helicopters, one backhoe and a magnificent sunset. Yesterday Matt took Julien through Duke Gardens; it was a gently warm and breezy day, made for walking. While Julien is deeply attentive during our excursions, he is not especially animated (as he used to be) nor does he want to walk. We are concerned that he may be depressed, a not uncommon combined effect of the narcotics, steroids and many weeks in the hospital. Hopefully coming home will help him regain his vivacity.

Tomorrow Matt is taking Jake up to Washington for the weekend so he can visit with Sarah, Aidan and Roxie, and so he can attend Lucas' birthday party. He is very excited to see his "old friends" but he also insisted that Matt bring him back to North Carolina right after Lucas' party Sunday so he can be with his whole family again. The most gratifying sentiment a mother can hear!

I've put new pictures up, and will let you know what Julien's counts are tomorrow.

Wednesday, November 12, 2003 6:37 AM CST

Day 57.

Matt here with a quick update.

Julien's white blood count is 0.8 today and his ANC is 624. I think he is enjoying confounding his parents and doctors with his unique engraftment pattern. We had another outside pass yesterday and we took a short walk around campus.

Tuesday, November 11, 2003 12:00 PM CST

Day 56 UPDATE: WBC are .8 and ANC is 480. But we are confident that he will get it and keep it above 500 soon enough. I am beginning to think that Julien should be a novelist when he grows up. His innate sense of timing and drama (apparently a family trait) allows him to keep a large audience on the edge of their chairs for longer than is really comfortable. Matt, characteristically modest, failed to put his byline on yesterday's late-breaking news.

* * *

Day 55.

Late Edition of the Julien Journal
5:00 pm, Durham, NC

"Mezey Allowed To Leave Transplant Unit for One Hour"

22-month-old Julien Mezey of Washington DC was given a pass by his doctors for a one-hour furlough out of the transplant unit. Mezey, accompanied by brother Jacob, mother, father and grandmother, played in the lobby of the children's clinic adjoining the hospital. Mezey walked up and down the spacious lobby with vigor not seen since pre-transplant days. He played with a Thomas train set in the lobby with his brother and was not deterred by the fact that there were no train cars to place on the rails. The only snag in the Mezey outing was that the younger Mezey repeatedly requested ("un, un, un") to play on the small, outdoor playground in front of the clinic. Sadly, the playground was locked for the day. Despite the setback, a source within the Mezey family characterized the outing as "fan-freaking-tastic."

* * *

Julien's white blood cells are at .9 again today and his ANC is back up above 500 (just barely) at 504. We now start over, hoping for three consecutive days of an ANC over 500, but since we are on Julien Time, I suggest you find a comfortable chair. He is no longer in such pain or so furious at the world, but he is weak, exhausted, and mainly wants to sleep and nurse. Slapstick, which used to elicit belly laughs, does still get a bemused smile these days.

In a Waldorf revival of yet another esoteric Christian celebration, Martinmas (anyone?), Jake joined the rest of the kindergarten last night for a lantern walk through the woods. It was a cold fall night, and walking under an enormous harvest moon hanging low in the sky, they sang lantern songs ("Its beam shines bright in the darkest night, lantern guide me with your light."). Jake loved it. Matt & I have also been evolving as Waldorf parents. We have increasing respect for the educational philosophy, particularly the antimaterialism, the belief that more toys and newer toys don't make kids happier or more engaged; the emphasis on imaginative play over skills building; and (hardest of all for a lover of pop culture like myself) the conviction that less media helps protect a child's sense of wonder and his attentiveness to the details of the world around him. However, the execution of these lovely ideals still manages to irritate us on a regular basis. We can't abide the orthodoxy and self-satisfaction of many of the parents and teachers. Sometimes the emphasis on inner joy feels like a rebuke to outer joy. As Matt said the other day, "They want kids to play, they just don't necessarily want them to have fun."

My mother was supposed to return to California today, but thankfully she was persuaded to stay on another week or so until her leg improves. She is on anticoagulants, but she is still having leg pain and the hemotologist she saw at Duke did not think she should fly if that was the case. Her strong sense that she needed to get back to work and back to her students was ultimately overcome by physical pain, medical advice and the generosity of her principal (who assured her in the kindest possible way that she was replacable).

We are keeping the lantern lit and looking often at the moon as we continue walking through this dark night.

Sunday, November 9, 2003 9:00 AM CST

Day 54 UPDATE: White blood cells are .9 and ANC is 414. Classic Julien!

Day 53 and we have wonderful news to share. This morning Julien's white blood cell count was .8 and the now more relevant ANC was 560! If he can keep the ANC above 500 for two more days he will be officially engrafted. They have even begun to discuss discharge with us, and if Julien engrafts soon, as they anticipate he will, we should be able to leave the hospital sometime during the week of Nov. 17. As yesterday marked the two-month mark of Julien's hospitalization, discharge feels dreamy and unreal. The doctors have already begun the process of weaning him off a number of the medications he is on. As Matt mentioned in his update yesterday, another piece of good news was that the lab did further tests on the bone marrow biopsy and was able to isolate two lines of blood-producing cells from the supporting cells in the bone marrow (which will remain Julien's own) and the percentages of donor cells in those lines were 72nd 79rather than the overall 52hich included supporting cells). As engraftment seems imminent, we are breathing more deeply, enjoying the way each moment feels roomier and not yet worrying about the obstacles still to come.

Saturday, November 8, 2003 9:55 AM CST

Day +53 and we have wonderful news to share. This morning Julien's white blood cell count was .8 and the now more relevant ANC was 560! If he can keep the ANC above 500 for two more days he will be officially engrafted. They have even begun to discuss discharge with us, and if Julien engrafts soon, as they anticipate he will, we should be able to leave the hospital sometime during the week of Nov. 17. As yesterday marked the two-month mark of Julien's hospitalization, discharge feels dreamy and unreal. The doctors have already begun the process of weaning him off a number of the medications he is on. As Matt mentioned in his update yesterday, another piece of good news was that the lab did further tests on the bone marrow biopsy and was able to isolate two lines of blood-producing cells from the supporting cells in the bone marrow (which will remain Julien's own) and the percentages of donor cells in those lines were 72% and 79% (rather than the overall 52% which included supporting cells). As engraftment seems imminent, we are breathing more deeply, enjoying the way each moment feels roomier and not yet worrying about the obstacles still to come.

Friday, November 7, 2003 7:54 PM CST

Day 52

Julien's ANC has risen to 310, although his white count was still at .5. As long as the ANC keeps going up, we are happy.

We also got some encouraging news on the level of donor cells in Julien's bone marrow. The bone marrow contains supporting cells as well as the cells that actually produce the white cells, red cells and platelets. The supporting cells are Julien's original cells and will continue to be his original cells, even after full engraftment. The overall percentage of donor cells in the marrow is 52%, including the supporting cells. The lab was able to isolate two lines of the blood-producing cells and the percentage of donor cells was 72% and 79%.

Thursday, November 6, 2003 5:12 PM CST

Day 51 UPDATE: Julien continues to refuse the easy course, and his counts have dropped the last two days (.5 yesterday and .4 today, although because the segs and bands have increased his African National Congress still hovers around 250-300) and with them, predictably, my spirits. But the doctors say that the dips are normal, even at this point. We also found out this afternoon that the bone marrow test revealed 52 percent donor cells, which the doctors are fine with. I would have found a higher percentage more reassuring myself. They plan on repeating the test with a regular blood sample next week (from a vein rather than the bone marrow) and this will be more informative as the bone marrow contains some support cells that will always be Julien's while his blood should become 100 percent donor cells. We should have those test results next Friday. On a happier note, Julien worked himself up to actual laughter by pulling on his nurse's extendable ID badge and watching it snap back. Jake regained the use of his foot yesterday when faced with the prospect of sitting on the sidelines during outdoor playtime. My mom is hanging in there and giving far more help than she receives. We'll keep you posted on the counts and the ANC. Your messages continue to amuse and sustain us--thank you.

Day 49 and Julien is doing beautifully. He was .5 yesterday and .7 today. Now that he is picking up the pace, we have begun focusing on his Absolute Neutrophil Count (ANC). The ANC is relevant because engraftment is defined as three consecutive days of an ANC over 500. (For those of you who enjoy the oncology lessons, the ANC is determined by adding the numbers of immature white blood cells--segs and bands--and multiplying the total white blood cell count by that number. So generally, the higher the white blood cell count, the higher the ANC.) Today Julien's ANC was 252. Even though it has taken him a full month longer than anyone expected to get to this point, he is almost certianly heading toward engraftment. And even better still, the increased risk of serious infection associated with being this long without white blood cells is somewhat mitigated by the fact that his kidney, liver and lung functions continue to be strong. We still don't know the percentage of donor cells, but apparently it is less relevant now that Julien's counts are going up. They assume that the donor cells are growing and that in time they will take over blood cell production entirely if they haven't already.

It is especially lucky that Julien is doing so well, because in every other respect today was awful. Jake spent the morning at an urgent care clinic getting treated for an infected splinter in his foot. My mother spent the entire day at the ER because of leg pains, and found out she has a blood clot. Both are on the appropriate medications and doing fine, but I almost lost it. Jake cried, wimpered, swooned and refused to walk like the french movie actress he is (I have no idea where he gets it). After carrying all 45 pounds of him around the hospital this afternoon, I was in a foul mood and it took everything I had not to shake him and impress upon him the relative triviality of his condition. But I knew that I couldn't. Not only because any pain is always serious to the person who experiences it, but because Jake in particular needs reassurance that when he is hurt Matt & I will take care of him with as much devotion as we take care of Julien. When I was giving Jake his antibiotic tonight he said, "See, I need medicine just like JJ." By the way, in case you doubt that Jake is a french movie actress, tonight at dinner he asked what the words "bizarre," "romantic," and "dramatic" meant. To her credit, my mother demonstrated "dramatic" by crying and swooning over a splinter in her foot.

I was listing toward a wimpering self pity myself this evening, but as I lay down to sing Jake to sleep I realized that I was simply exhausted. The absurd confluence of illness and injury today would have almost been funny on a few more hours of sleep. And so I am heading off to bed, to refuel for whatever tomorrow may bring, however bizarre or dramatic.

Friday, October 31, 2003 8:43 PM CST

Day +45. It is the happiest of Halloweens. We didn't hear about the percentage of donor cells today, and will have to wait until Monday for that, but somehow it doesn't matter so much right now. A newfound rush of joy and optimism is enough for today. Julien was .4 for the first time this morning and Dr. Kurtzberg thinks he will likely engraft in the next week to ten days. Although we should probably continue to allow for Julien's own leisurely pace, it seems like he is finally gaining momentum. In addition, the doctors made the first reduction in his steroid dosage yesterday. His cheeks and his irritability should slowly begin to deflate. And best of all, Julien smiled at me this morning. Even though the smile was tentative and pained, it felt like a thousand suns were shining on me. I melted in the warm hope that Julien is still there inside the swollen, hurting boy.

A couple weekends ago Jake and I went to a pumpkin farm and walked the rows of pumpkins, finally cutting three off the vine. He chose two big ones and a little one for Julien. Wednesday I carved them to Jake's exacting specifications. He wanted one pumpkin to be a T-Rex, another to be a flower, and on the small one he wanted the words "Get Well JJ." (See the photo album for a glimpse of the results.) This afternoon we took Jake to visit Julien so they could put on their costumes and eat some candy together. The fun lasted about 15 seconds. For some reason Julien didn't want to be jammed into an elephant suit. (Again, see the photo album.) This evening, before venturing out into the warm autumn night to trick-or-treat among the extravagantly decorated bungalows around the corner on Club Boulevard, we celebrated my mother's 62nd birthday. I can't remember ever feeling quite so celebratory or so grateful for small pockets of happiness and unbridled hope.

Wednesday, October 29, 2003 10:30 PM CST

Day 43 and a quick update to say that Julien was .3 today; a big relief after a week at .2. Jake overheard me telling someone Julien was .3 and he said, "Point 3! Point 3! Hooray my brother is coming home soon." We had no idea he was registering the details at that level, and we hope he is right. Also a slight correction to Matt's entry: while the presence of donor cells is good news, and very reassuring, how good and how reassuring will depend on their percentage (and their inclination to reproduce at a brisker pace than has so far been the case), which we still won't know until tomorrow or Friday. Everything Matt said about our belly buttons is accurate. We'll keep you posted.

Day T 42.

Dr. Kurtzberg, the head of the transplant program, was able to get the hospital lab to run some of Julien's bone marrow tests early and we got some good news today: Julien has donor cells in his bone marrow. This means we continue to wait for those cells to grow (instead of having to do another transplant). Julien's count was 0.2 again today.

Dr. K (the hospital's answer to Coach K) came to visit us yesterday to see how we were doing. As we may have mentioned, Julien's current comfort device is to dig his finger into my and Naomi's belly buttons (although not at the same time). At first, this was an endearing quirk of our little JJ. As it turns out, however, the belly button skin is very tender and does not tolerate repeated poking well. Also, the sensation of having a tiny finger jabbing into one's abdoninal wall is really quite unpleasant. I explained this to Dr. K, along with the fact that my belly button had started bleeding. She suggested that it was time to put some limits on Julien and to reintroduce some structure into his day. As of today, belly buttons are off limits. Also, Julien goes out into the hall once a day; has a bath at 7:30 and lights out at 8:30. Like David Nivens in The Bridge Over the River Kwi, the new routine has engerized Naomi and me. We both feel oddly upbeat and positive by making Julien do things he doesn't want to do in the name of structure.

Sunday, October 26, 2003 7:50 AM CST

Day +40. Our phone service has been restored and Julien's counts have remained at .2 for four days now. The biopsy on Friday went quickly and Julien seemed to recover fast. I think this was because "recovery" now is just a return to irritability rather than his normal self. As they wheeled us back to the transplant unit from the operating room, Julien got a fuller glimpse of the world outside: cars and buses driving down the street, people walking around, the wind blowing; and when it came time to go back to into his room he blew a fuse. He screamed and thrashed and pointed to the door leading out of the unit. It was hard to see, but also reassuring. Despite feeling awful and spending 50 days in the same room, he has not resigned himself to life in the hospital. Once I wrestled him into his room, I just kept telling him that he is getting better and stronger and will soon be out in the wide and wonderful world for good.

As Paul said, the initial results from the biopsy are good but limited. There is no sign of leukemia in the bone marrow and there are some white blood cells there. The real information will come at the end of the week when they tell us whether the cells are donor cells, Julien's own cells, or some combination of the two. If they are Julien's cells, we will have to do another transplant right away and start all over again. If they are donor cells, we will continue to wait for engraftment, and if there are both donor and host cells, then there are various strategies for helping the donor cells win the battle for bone marrow residency. Dr. Kurtzberg thinks its maybe a little more likely than not that the cells are donor cells, but there is simply no way to know yet, and so we must wait. I find the waiting terrible. It feels like a conscious effort to breathe.

I understand that some of you are confused by how we are counting white blood cells; what does .2 mean anyway?! I never know how much to explain, but basically white blood cells are counted by the thousand per cubic milliliter. A normal white blood cell count of, say, 6.3 means there are 6.3 thousand (6300) cells per cubic milliliter of blood. Julien has .2 (200) white blood cells per cubic milliliter of blood. It is not a lot, but it is something.

In other respects fall is lovely here in North Carolina. Farmers plow their fields into "corn mazes" for college students to get lost in, and the state fair is here. Matt took Jake and his friend Noam yesterday, and Jake got to ride a kiddie rollercoaster, hold a newborn baby chick, and see an enormous dairy cow get her utter buttered. All in all a good day.

Friday, October 24, 2003 8:17 PM CDT

Day 38. It's Friday evening. This is Naomi and Matt's friend, Paul Herman, writing. Naomi and Matt asked me to give a quick update because their phone line is down for some reason and they can't log on to the website from home. There isn't a lot of news yet. The bone-marrow biopsy went well. Julien did great and recovered from the anesthesia quickly. Dr. Kurtzberg just called Naomi and Matt about half an hour ago to say that, based on initial results, there was no bad news. There was no evidence of leukemia in Julien's bone marrow, which is clearly a good thing, and there were some immature white-blood cells. The real question is whether those cells are Julien's cells or donor cells. The hope is that they are the donor cells.

Naomi and Matt will write as soon as possible to give a more complete update and to send more news whenever it's available.

Wednesday, October 22, 2003 7:34 PM CDT

Day 38. Julien was still .2 today so he is going to have a bone marrow biopsy to see what's going on inside the marrow. The cell growth in the marrow is about 2 weeks ahead what shows up in the blood.

Day 37. Quick update to say Julien was .2 this morning. Not too shabby! Keep up the good work, and we'll touch base tomorrow.

Day 36. Finally, some good news! Julien's white blood cell count hit .3 today. Even though he may go back to .1 tomorrow, he has broken the cycle and is heading in the right direction. Yesterday the doctors decided to schedule his bone marrow biopsy for this Friday rather than next Tuesday (due to scheduling issues with the operating room), but they will cancel it if he hits .4 tomorrow or Friday morning. Since I credit your collective prayers, love and wonderful healing energy with this small breakthrough, please see what you can do to get him to .4 despite the short turn around time.

My mom and Steve arrived this afternoon and Jake and I got to have dinner with both of them and Marilyn, who is down from DC. The two missing grandpas should arrive this weekend. It felt great to be surrounded by family after working so hard these last 6 weeks to keep our own little family from feeling too fractured by the disorienting separation that hospitalization exacts. Jake has recently started insisting on candlelight (he calls it a "glowing dinner") and sung blessings at dinnertime. On his own he has found and instituted a little ritual with a lot of warm, cohesive power.

Tuesday, October 21, 2003 8:55 AM CDT

Day 35. I have been reminded by a slew of phone calls how many of you are waiting impatiently with us for those cells to take off and how frustrating it is to hear nothing new. Believe me, I know. Unfortunately, I haven't written because there has been nothing new to report; Julien continues to stay at .1 with very small spikes to .2 every three or four days. He was at .2 last Thursday and again today. As you might imagine, Matt remains steadfastly confident that Julien is doing great, going at his own pace, and will get there. As much as I appreciate it, I find Matt's emotional fortitude utterly baffling. As you also might imagine, my spirits rise and fall with the counts, I suffer from exaggerated hope and exaggerated despair, I let my own fear lead me around by the nose and follow it into the darkest of recesses, I bawl like a baby at the drop of a hat. It being a .2 day, I can tell you this dispassionately, but the fact is I have been very blue during this long wait. The doctors, for their parts, mainly agree with Matt. He is going slowly but is not way outside the range of normal, his organs, which have taken a beating from the chemotherapy, are functioning really well, and he hasn't had a fever in weeks. I acknowledge this is all good, but when you haven't heard your child laugh or even seen him smile in weeks, misery sets in. And to add insult to misery, the boy next door to Julien died this weekend. His mother was so nice to me and Julien. It has shaken me and compounded my sadness.

A week from today is Day 42, when if nothing has changed they will do a bone marrow biopsy to see what is happening in the marrow (the cell production in the bone marrow is about two weeks ahead of what one sees in a regular test of the peripheral blood). If the cells in the bone marrow look like they are doing well, we will continue to wait it out. If not, we will have to think about doing another transplant. Meanwhile, Matt has been wispering in Julien's ear that the new cells in his bones will rise up like a mighty nation and be more numerous than the stars in the heavens or the sands of the shore. I just tell him how beloved he is, and how many wonderful things lay ahead for him: magnificent books to read, foods to taste, places to discover and people to love.

Jake has made a dear friend here, a really sweet boy in his class named Noam. He and Noam hold hands, whisper in each other' ears, and play almost exclusively with one another. Noam's mother Irit, while getting a PhD in musicology, makes money by writing the horoscope for one of the two main newspapers in Israel. Irit told me something yesterday that I found reassuring. She said that Capircorns (of which Julien is one) usually take the slowest and most difficult path; that strong my nature, their journey makes them stronger still; and that their strength and stubborness almost always get them to where they are going.

Thursday, October 16, 2003 9:00 PM CDT

Day +30 and Julien continues to flirt with engraftment, but appears shy of total commitment. On Tuesday his white blood cell count was .2 again, which was encouraging, but he has been at .1 since (.2 is the lowest count that the doctors take seriously, and by way of comparison, normal white blood cell counts run between 5 and 10 (thousand)). Some kids shoot up and others take their time, bouncing up and down for awhile. Julien is among the latter, and while the doctors remain confident that he is on his way to engraftment, the wait and the dips are agonizing for us. As Matt mentioned, once he is consistently producing more cells, they will begin weaning him of the steroids; a day which can't come too soon. The Grumpy Emperor grows daily more grumpy, sleeps less and less, stuffs huge fistfuls of food into his mouth or refuses it altogether, nurses constantly if I am with him, and is generally pissed off. Dr. Kurtzberg thinks the irritability is a sign of inner strength, a kind of energetic refusal to submit to the confinement, discomfort and indignities of his treatment. I appreciate this way of looking at it, but more than anything I want the boy we brought into the hospital back. One of the doctors told us that he had a patient once, a very sweet girl, who was so altered by the steroids that she took a pencil and jammed it into her father's leg. So I suppose we should be grateful that Julien really just has a bad case of being two, probably exacerbated by the fact that he is in fact almost two. Steroids have also puffed up his face and cheeks to almost unrecognizable proportions. I have been keeping pre-transplant photos on this main page just to remind myself what he really looks like, so I can more easily visualize him healthy and happy. I have put a few recent pictures of the Emperor in the photo album.

Since my therapist, Jane Austen, is on vacation, and I am thinking some about the possibilities and forms of God, I stumbled across two very different books on faith and miracles. I am not looking for religion so much as a vocabulary or even a window onto what faith feels like to people, something I have always been curious about. I finished Anne Lamott's Traveling Mercies: Some Thoughts on Faith, which was lovely and touching and thankfully irreverent. And I am about a quarter of the way through what is so far a spectacular novel by Leif Enger, Peace Like a River. Both Matt & Kate raved about it, and I figure that any book that both of them could like must be itself a small miracle. At one point in Traveling Mercies, Anne Lamott talks about all the people who helped her when she was most in need of help, and how it reminded her of a line of Blake's--that we are here to learn to endure the beams of love. This experience and your messages on this website (which we read whenever we are home and which sustain us) are helping to teach us this. Thank you.

Monday, October 13, 2003 8:58 PM CDT

Day T+27.

Matt here and I'm happy to report some early signs of engraftment. On Friday, Julien's white count was 0.2 which is the first time it's been anything other than 0.1 or less than 0.1. The doctors told us he needs to have at least two days of 0.2 before we can really get excited (and before we can disemminate such information on our website). Unfortunately, since Friday, he has been back to 0.1; however, there are two promising developments. First, the doctors looked at a slide of Julien's blood and saw two early forms of white blood cells (segs and bands) and second, Julien has developed a mild skin rash which often accompanies engraftment. So, although he still has not had two days of 0.2 (or higher), based on the slides and the rash, the doctors are optimistic that the transplant is engrafting. They also said that they hope to start weaning Julien off of the steroids on day 30. This would be wonderful for Julien, us, his doctors and nurses, and anyone who enters his room.

We have been so fortunate to have had Kate and Steve and Koethi visiting who cooked, cleaned, shopped, entertained (Jake and Naomi and me), did laundry, bought books and CD's, made coffee, told stories of life in the big cities (SF and NYC) and brought beautiful baby girls with them: Ella and Stella (when they win Oscars I hope that David Letterman is the host).

Jake and I had a nice afternoon at the duck pond in the Duke gardens on Saturday. We feed the ducks and watched the turtles. Best of all, there were two boys fishing and Jake was absolutely fascinated. We watched them fish for over an hour and, when they were leaving, one of the boys gave Jake a bright green rubber worm lure.

Thursday, October 9, 2003 9:37 PM CDT

Day +23 and the wait for cells to grow is growing harder. It doesn't help that Julien is getting more and more unhappy and agitated. They think it is either pain (from any number of possible sources, including bone pain from engraftment) or what in older kids they call steroid psychosis, and what appears in little ones to be steroid tantrums. The steroids can make people beligerent. Julien has been like a grumpy emperor: he demands something one minute which he no longer wants the next, he crumples into tears when his meal tray is not available at 4 a.m. or he can't make himself understood, he refuses to let anyone touch him when he is most upset, and that for me is the hardest part--not being able to comfort him. These last few days have been for me the hardest since arriving in North Carolina. I am very tired, very sad, and scared out of my wits. I mostly hold it together, however precariously, when I'm with Jake, but the other day I just dissolved into tears while we were playing with his lego race cars. He asked me why I was so sad and I told him the truth, that I wanted JJ to get better and come home so that our family could be all together again and things could be normal. His instincts were perfect. Without trying to avoid my sadness, he made me laugh, and then gave me a wonderful hug. The only thing better than a hug from someone who can envelop you with their lovingkindness and physical presence (Scott Hafner is the master of these hugs, and if you have never been hugged by Scott, I urge you to make a pilgrimage to San Rafael, CA, as soon as possible; the fact that you might not know him should not deter you) is a hug from a kid who means it, who softly crashes into you and who holds on tightly wherever his arms land. I suppose I'm saying all this because your messages feel like little hugs, and I am very grateful for all of them. So often these days it feels like a huge wooden mallet is pummeling my heart, and I just keep hoping that when it stops, my heart will still be intact, and that it will be that much more tender.

Sunday, October 5, 2003 10:12 PM CDT

Day 19. Julien is a little more animated than he has been. He sits up, flips through books and magazines, occasionally gets out of bed, and has even laughed a few times. He has also started eating again, which is amazing considering that the chemo has left him with no taste buds for the time being (literally no taste buds--the doctor showed me today how unusually smooth his tongue is). But mainly he lies in bed with us and feels crappy. It is hard to see a kid who is so naturally active and vivacious in this state. There is still no sign of the new cells engrafting, but they say it is too early to worry. The average time it takes to engraft is 25 days. Still it is hard to be far enough out from transplant that engraftment is possible without being disappointed each day when his blood test shows no white blood cells. Jake visited today, which made Julien very happy. They played with trains, made a train track out of paper towels, and watched a Thomas the Tank Engine video. Julien's new enthusiasm, besides Go-Go Barbie, is Jake's enduring enthusiasm: Buzz Lightyear. The contagion had to happen sooner or later.

I think Matt & I are both starting to feel the emotional fatigue. But a visit last week from Paul and another this weekend from Nina, David, Sarah and Aidan have bouyed us considerably. I also finished the Jane Austen ouvre, which always leaves me a little sad. I was as delighted by Pride and Prejudice as ever, but I was surprised to find that I liked Persuasion even better than I remembered and Emma a little less than I remembered. Even when the plot is fanciful, Austen's emotional pitch is always perfect, and the fidelity and passion in Persuasion struck me as more serious and compelling this time around than the rational love of Emma and Mr. Knightly. Persuasion not only portrays passion, it is also written with more passion than I had ever given Austen credit for. I was stunned to find Austen write, as Anne is about to read the letter left for her by Captain Wentworth at the very end of a very long and torturous romance, "her eyes devoured the following words:" Devoured?! I love Austen all the more for the oh-so-infrequent excess. Maybe it is because she wrote Persuasion as she was dying. Emma was my favorite Austen novel when I was 25, when I must have fancied that I shared the heroine's many virtues. It turns out we are much more allied in our vices. "The real evils of Emma's situation were the power of having rather too much her own way, and a disposition to think a little too well of herself." The result was, to borrow a phrase from a former student and dear friend, she bugged. Much like Mansfield Park, I found the book wonderful in spite of, rather than because of, the heroine. But I did learn long ago from Emma that our own virtues and vices are often dependant on and inextricable from each other. It is a lesson all the more valuable in that it allows me to continue to think a little too well of myself.

Because Julien has been too irritable this last week to let me take pictures, I am posting a few in the photo album of Jake and Julien having fun in Durham just before Julien went into the hospital.

Wednesday, October 1, 2003 9:39 AM CDT

Day T+15. Julien's fever broke Saturday night and since then he has been in almost total hibernation. He sleeps about 20 hours a day curled up next to me or Matt. He is using lots of platelets. We have heard that both the sleeping and the platelet depletion are signs of the body working hard to make cells. So he is doing what he should be doing and we just cuddle with him while his body labors and he sleeps. He is flirting with cell production. For 4 of the last 5 days his white blood cell count has been .1, which is not enough to get excited about, but it is better than 0. Since we are past day +14 things should not get any worse, and I am optimistic that very soon they will get better.

Jake has a new way of introducing himself which I witnessed at the playground the other day: "Hi, my name is Jake. I am an eating machine. I eat all day and I eat all night. I eat everything. I eat the world. You better keep your food away from me." It got a laugh. And it is true. This morning Jake drew a picture of himself and Julien laughing together. A good omen.

Friday, September 26, 2003 11:20 AM CDT

Day T 10. Julien held out for 8 days, but in the last couple days he has finally started feeling pretty bad, sleeping more and eating much less. He spiked a fever yesterday which continues and he began throwing up last night. This is expected during the time that he has no white blood cells and the effects of the chemo are being felt in other parts of the body (chemo is a blunt weapon designed to attack the cells which reproduce quickly; primarily intended for the blood, it also effects the hair, skin and GI track, and sores along the GI track cause mucocitous and vomiting). In fact, they expected all this sooner. When the doctor came in last night, he said, "So Julien, I see you have finally decided to act like a real transplant patient." We are in the worst of the pre-engraftment phase. The doctors say day 10 until 14 are when the kids feel the worst, and things start getting better once the new blood starts producing white blood cells. When he doesn't have a fever, Julien still has periods of complete spunk, in which he runs down the hallways (with a parent chasing after with the IV pole to which he is constantly attached) or visits the newly renovated lounge/playroom. The new playroom is also stocked with toys, and Julien's favorites so far are the Barbies and the Barbie tea set. He made me very proud by selecting from among the numerous Barbies in the drawer, Go-Go Barbie, who has knee-high pink boots and a pink vinyl skirt. Julien is a very cool kid.

Tonight and tomorrow we celebrate Rosh Hashanah, the Jewish New Year, and we are especially excited to welcome in this new year with your many blessings for health. Next week, we'll try out Michealmas and see if we can't slay the dragons of fear and darkness. This is a good time for bravery and new beginnings.

With all that we have been through and the many prayers from many faiths coming our way, I have been thinking more about God than I ever have before. My thinking tends to fall into the following categories: a) the possibility of, b) the form of, c) bitter recriminations against, and d) humble applications to. Since I get no traction with the first category, I dwell on the second. There is a quilt that hangs on the wall of the bone marrow transplant unit here donated by a class of kids, it has their hand prints on it and it reads: "God has no hands but ours." This phrase has really resonated with both me and Matt. To the extent that God is present to us, it is as the expressions of love, compassion, kindness and humanity of those around us. For me, God has no face but all of yours. And lest I get too maudlin and metaphysical, you should know that despite the occasional doubts harbored by his parents, Jake emphatically insists that he believes in God and that God is a force (although an anthropomorphized force with powers that bear an odd resemblance to Buzz Lightyear's).

L'Shana Tovah.

Saturday, September 20, 2003 9:45 AM CDT

Day T+4 and so far Julien is doing great. He continues to impress everyone with his vitality and resilience. He is much happier and more active than the doctors expected at this point. He is really a tank of a kid, completely impervious to most of the meanest medications. His white blood cell count is now at zero and he has very little hair left, so we know the chemo had the desired effect on his bone marrow, but in other respects he is unfazed. He has been especially energized by Jake's regular visits.

We also survived the hurricane, which was gusty and impressive here in Durham. We lost electricity for 24 hours, but other than that all was fine. The hospital generates its own electicity and has generators as well, so that was the best place to get hot food. There is nothing like having a seriously sick kid to keep you from worrying about other more minor natural disasters.

Last weekend Lisa and Bob not only drove down from DC to keep us company, cook us food, and provide Jake with a visit from their son Lucas, one of his favorite people on the planet, but they also gave us a digital camera. So thanks to the enormous generosity and thoughtfulness of our friends, we have fully entered the 20th century, and are now only one century behind in high-tech accessories. Thanks to this gift, there are finally more recent pictures in the photo album. They were taken yesterday (9/19) in the hospital. I promise the quality and size will improve as I learn the art & science of digital photography.

Matt & I continue to thrive on your messages, and have found much more comfort and community in this website than we ever anticipated. Thanks you for encouraging Julien's cells and throwing your hundreds of virtual arms around our family.

Tuesday, September 16, 2003 10:24 PM CDT

Very late on T Day. Thank you all for sending us your prayers, strength and humor today--we took them all and gave them to Julien who is doing wonderfully. It was a very exciting morning, pivotal in terms of his treatment but as it turns out, almost a non-event as a medical procedure. The actual transplant involves no doctors. First thing this morning the lab thawed out the blood cells from the umbilical cord that had been selected for Julien (Julien's Grandpa Bill got to watch the high-tech thaw) and then the blood was couriered the three blocks to the hospital. A little after 11 a.m. the nurse brought in the blood, put it on the IV pole, and by 11:30 he was getting his new blood. Julien has two central lines that come straight out of his chest, one of which has two tubes, so that there are three "ports" into which he can get fluids, medications, blood transfusions and supplemental nutrition and from which the nurses can draw blood, all without a needle. So a bone marrow transplant simply entails hooking up the bag of donor blood cells to one of his central lines and letting it drip in. Julien was awake, sitting on my lap watching a Thomas the Tank Engine video, his brother sitting next to him, and his dad, Bubbie (Marilyn), Grandpa (Bill) and Papa (Bob) all jammed in the room around him. Gran (Olivia) and Coach (Steve) were sorely missed, but with us in spirit and telephonically. It was very exciting and we all ate an oreo cookie to celebrate. Truth be told, Julien just held his oreo and Jake ate four. Before the transplant was even finished Julien was napping.

The amazing thing is that the donor blood is simply put into Julien's vein and from there finds its way into his bone marrow and with luck begins to engraft and grow new blood cells. If all goes well and the donor blood cells take off and Julien's own blood cells are effectively eliminated by the high-dose chemotherapy and do not come back, Julien should be healthy. He'll also be a medical rarity and a detective novel goldmine: his blood will have different DNA than the rest of his body. Who he is genetically will depend on what part of him is tested.

The motto of the bone marrow transplant unit is "grow cells grow" and that will be our mantra for the next few weeks as we wait for signs that the donor blood has taken root and begun to function. In the meantime he'll be getting antibiotics, antifungal meds, and antiviral meds to protect him against infections while his immune system is non-functioning; he'll get red blood cell and platelet transfusions while his own body isn't producing them; he'll get steroids to help prevent the donor blood from attacking his body; and he'll get any number of other medications as they become necessary. He'll also be getting huge amounts of love and encouragement from all of us and all of you. Thank you so much for that.

Friday, September 12, 2003 9:13 PM CDT

It's Friday night, day T-4 (four days to transplant if you missed the vocabulary lesson). Julien is more than half way through the chemo and has only thrown up a couple times. He is an amazing little guy: happy, loving, active and indominable. He draws on the walls, eats play dough, opens the mini-refrigerator door every fifteen seconds, throws toys and tantrums, dances and flirts with the nurses. The doctors are pleased with his energy but continue to remind us that this is the easy part--that the kids feel worse and are more vulnerable after transplant when their white blood cell count goes to zero. We are really pleased that he has adjusted to this new and confining environment so quickly; the first couple days were difficult--he went to every exit door on the ward and dissolved into tears when we wouldn't let him go out. It was heartbreaking for everyone. But he seems much more content now. His room is decorated with zoo posters and a bird mobile (thanks Julie), cactus lights (thanks Esther), and glow-in-the-dark stars (thanks Mama). We couldn't fit another toy or book in there, and just to add to the appeal there are beautiful trees as well as a big construction site visible from his window. Tomorrow he starts on an immunosupressant drug called ATG which has very common and nasty side effects, but we are hoping for the best.

Jake seems to be making the transition to a new town and a new school very well. His primary way of greeting new kids is to say, "Hi. My name is Jake. But my whole name is Jacob Reuben Paul Mezey." Unfortunately most kids just stare at him and don't know what to say. But a few recognize a fellow traveler. He found a boy named Eli at the park the other day who likes planets and all things intergalactic as much as he does and they spent a wonderful couple hours together exploding Mars I think. Jake also appears to be thriving at the Waldorf school. For all that is amusingly antiquated about it, the teachers are warm and nurturing and Jake responds to them. There is no fear that waldorf will lessen his love of Buzz Lightyear. He is the only kid I've heard of who wants to be the same thing (Buzz of course) two halloweens in a row. If waldorf knew about even half the Buzz merchandise we own, I'm sure jake would be expelled. Jake is so single-minded in his worship that I have no idea who Yugio is. For that I should probably be thankful.

In a wonderful synthesis of Waldorf and Jane Austen, our family will be celebrating Michaelmas this year (Sept. 29). Waldorf has revived this ancient holiday that Austen frequently mentions in her novels. I don't quite understand what it celebrates yet, but from what I gather from the waldorf literature, some combination of harvest, strength (Archangel Michael and St. George weilding their swords against the dragons of the soul) and spiritual balance. If any of you Austen fans know what Michaelmas represented in eighteenth century England I'd love to find out. If it is even remotely about struggle and strength in the season of darkening days, we know all about that and will happily lift candles, cups and voices in prayers for success.

We love your messages. Thank you again for them. The energy we put into this website comes back to us greatly multiplied.

Tuesday, September 9, 2003 11:00 PM CDT

Julien went into the hospital on Sunday (Sept. 7). The rooms are very small -- a cross between a submarine and a space capsule, with a Murphy bed for parents.

Fortunately, the hallway in the unit has filtered air (like all the rooms) so he can play out there. He has quickly learned to wear a mask if he wants to go in the hall. There are many attractions out there, including nerf basketball (he makes the old man proud with his sheer persistence if not his shooting touch), wagons and a construction site within the ward (the parents' lounge is being renovated). Today we watched the floor being put down.

Julien is still feeling well and is very playful and active. The doctors tell us that he will probably continue to feel pretty good until after the transplant.

We are getting settled in our house. We have met the 6-, 4-, and 2- year olds who live next door and we have found the local playground which is a five minute walk away.

Friday, September 5, 2003 8:03 PM CDT

Matt & I love getting all your messages of love and encouragement. Thank you for them. As my students already know, there are bonus points for humor.

Yesterday Julien completed 2 weeks of pre-transplant tests, and everything looks good. We also have had a couple long meetings with Dr. Kurtzberg (a wonderful doctor and head of pediatric stem cell transplant at Duke) and we have a good sense of the roadmap from here on out and wanted to share it with you.

Julien will be admitted to the hospital this Sunday afternoon. He'll undergo 8 days of intensive chemo that is designed to wipe out entirely his own bone marrow. Then he'll have a day of rest to let the chemo drugs clear out of his system, and then on September 16 he'll have the transplant with the cord blood. So that you understand the nomenclature from here on out, everything is dated from the date of transplant(day T). Today, Friday, is T-11; the day after transplant is T 1 and so forth. After transplant he'll receive an artillery of medications intended to prevent the many problems that can arise as his own blood cell counts dwindle and before the donor cells have engrafted and begun to grow (this very fragile period without a functioning immune system lasts anywhere from 3 to 6 weeks). He'll get meds to fight graft versus host disease, fungal infections, viral infection, bacterial infection, pneumonia, liver failure and medication to stimulate cell growth. Most kids also receive intravenous nutrition because they have stopped eating. Assuming the donor cells engraft, his own cells don't grow back, and he avoids serious infection, Julien should be out of the hospital sometime in November. However, once out of the hospital, he will still be very immuno-compromised and won't be able to go anywhere where there are crowds, and must wear a mask in most public places. Dr. Kurtzberg thinks that Julien's greatest risk is of relapse following transplant, and if that were to happen it would almost certainly happen in the first year. So if we are lucky enough to get there, the year following transplant will be a hard and anxious one.

Until then we are trying very hard to take this one day at a time. We kept Jake home from school today and had a wonderful day together. We went out to lunch, had hot fudge sundaes, went to the exceptionally good North Carolina Museum of Life and Science and rode the train, played in the fountains, and wandered through the butterfly farm. When Julien is not joyously attacking Jake and leaving him in tears they are having a lot of fun together. Jake still seems happy with his 19th century education. When I asked him how the millet was, he said, "I like it okay. It's like bird feed." Despite the initial success of his waldorf education, I think jake will be very gratified to know that Sarah refuses to acknowledge her class complete without him.

By the way, the pictures on this site are from Julien's hospitalization in DC. When we get some new pictures processed, I promise to update the photos.

Tuesday, September 2, 2003 7:33 PM CDT

We had a tough bit of news this weekend. Based on the bone marrow test Julien had last week, he is not in remission (he has around 10% blast cells), which unfortunately makes the prognosis worse by increasing the likelihood that he'll have a relapse after transplant. Based on Dr. Kurtzberg's review of his previous bone marrow tests, she doesn't think he was in remission after the chemo in DC either. The good news is that his counts have not worsened, which is a non-negligible silver lining given the aggressiveness of his disease. Apart from this, things are going well. Julien is full of energy and endless curiosity about the world and all things electronic; and he and Jake are having a ball together. We really like the transplant program and people at Duke so far. Our tour of the pediatric bone marrow unit today reinforced our confidence in the place. It helps us maintain both hope and sanity to find everyone we encounter (patients and health care providers) upbeat and happy and organized.

Some updates on the rest of the family:

Jake had his first day of "big-kids school" today at the local Waldorf school. The campus is on 50 acres of woods just north of Chapel Hill. They are such strict anti-materialists at Waldorf that as far as I can tell the only authorized play items are wood chips, felt and beeswax. The kindergarten classrooms (there are 16 4-6 year olds in each class) are draped in pastel gauzy fabrics and filled with light and tree branches. The kids bake their own bread (for which they grind the flour), help in the garden and cart wool. Despite Jake's love of Buzz Lightyear and his lack of Amish training, he seems to love it and didn't want to leave at the end of the day. We'll see how tomorrow goes: on Wednesdays they have millet for snack.

Matt is his usual self: a rock with a heart as sweet and soft as a muffin. He makes sure the rest of us don't go hungry and he keeps the three drama queens he lives with more calm and content than we could conceive of being otherwise. He deals with stress by working out, so he is actively looking for a gym.

I deal with stress by doing the one thing that always provides me with pleasurable distraction: reading Jane Austin. Sadly she only completed 6 novels and I've read them all innumerable times, but I'm going through the ouvre again at a breakneck pace. If anyone wants to discuss Mansfield Park, Northanger Abbey or Sense and Sensibility, please call me immediately. As much as I love everything she has written, those are my least favorite (the first has an insipid heroine, the second is too self-conscious, and the third lacks the nuanced character of the others). But I'm now on to Persuasion, which may be my favorite.

Saturday, August 30, 2003 9:24 PM CDT

No doctors today for Julien.

Jake and Matt went to the Durham Bulls game tonight. A Bulls player hit a home run over the Durham Bull billboard in left field and smoke came out of the bull's nose. Jake was scared yet fasinated and could not turn away. He was disapointed when it was all gone. Matt had the BBQ meal deal and was scared yet fasinated and could not turn away. He was disapointed when it all was gone.

No doctors tomorrow.

Thursday, August 28, 2003 9:26 PM CDT

Julien had surgery today to add another Hickman catheter (or central line). He already had a double Hickman catheter but there will be times when he will be receiving three different drugs by IV at the same time. He also had a bone marrow biopsy and a dose of prevenitive chemo directly into his spinal column. He did great in surgery and recovery. He is a little sore but doing very well tonight. Also, Jake came down from DC today, so the brothers Mezey are reunited.

Tuesday, August 26, 2003 9:46 PM CDT

We are here in Durham where Julien will receive a cord blood transplant at Duke University Hospital. Julien has pre-transplant tests all this week and next week (August 25 - Sept. 8). He will likely be admitted to the hospital around Sept. 8 to begin the transplant process. Once admitted he'll have 8-10 days of very heavy chemotherapy meant to destroy all his bone marrow. Right after chemo, they'll do the transplant, which involves transfusing him with the blood from a matched, unrelated umbilical cord. The blood will migrate to the bone marrow and if all goes well will begin making new, healthy blood cells in 20-40 days. The typical stay in the hospital is 50 days and he'll need to stay close by the hospital for another 2 months after he is discharged. With luck we'll be home in DC by Julien's second birthday on December 28, 2003.

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