Eyes wide shut

Since my last update, Brad has been getting eye lubrication hourly, in the hopes that that would help the epithelial (outermost) layer of his cornea heal more quickly. While he has recovered a little more peripheral vision and his central vision seems very slightly less clouded, the progress (as with everything else) remained very slow, so the ophthalmologists decided to go forward with the next procedure they had planned: the tarsorrhaphy, which was done yesterday in his room.

I’ll start out by saying that the procedure, which Brad’s eyes are being held temporarily closed to facilitate healing, went very smoothly and Brad feels just fine today and is in no pain. I don’t plan to get too graphic in this post. But that said, before I continue, let me give a warning to the very squeamish: even though Brad’s procedure was very smooth sailing, you may want to stop reading right now. Yes, you; if you used to do a full-body shudder as a kid whenever anyone said that gruesome rhyme about truth telling (you know the one: “cross my heart, hope to die, stick a needle in my eye”), you should definitely not google “tarsorrhaphy” and may not want to read this post. Just know that Brad’s eyes are getting a complete rest to speed up healing and everything is fine, and we’ll keep you posted on how things are going with his vision. I’ll also say he’s starting to eat a bit more (latest: beef stew) and they are doing a calorie count on him and reducing his IV nutrition, though he still has a long way to go on volume of food before he can leave the TPN behind. And, as you know, he’s starting to feel better and get out of the hospital room more, so progress on his overall condition continues, slowly.

For those who want a few more eye details, they lie ahead.

The idea behind a tarsorrhaphy is to speed healing by ensuring that the regrowing, healthy epithelial cells aren’t continually irritated by blinking and the friction of the eyelid on the eye. In Brad’s case, the fact that his lower lids were turning inward (along with the lashes) made this function of the tarsorrhaphy especially important. Although he was keeping his eyes closed most of the time, he still involuntarily blinked. Thus the doctors decided to do a “temporary drawstring tarsorrhaphy,” which prevents him from opening and closing his eyes but allows the doctors and nurses to check his progress and provide eyedrops by opening his eyelids gently. The lids are sutured together, with small transparent plastic strips lying over the top of his eyelid (right along the line where eyeliner would be applied if he were an eyeliner kind of guy). The doctors threaded the ends of the sutures, which are extremely fine, through the plastic pieces, and they are looped and tied for use as the “drawstring” of the name.

Brad was understandably anxious about the procedure but the worst parts turned out to be the anticipation and the numbing. He obviously got a big dose of local anesthesia to numb the eye area completely. After that, the suturing went relatively quickly. By luck, the ophthalmologists turned up to do the procedure (which was all done in his room, with him lying on the bed) while I was there, so I was able to stay and hold his hand during the procedure. He did great throughout and today said that the sutures are not bothering him. Thanks to the clear plastic strips, from across the room his eyes don’t look that different from usual closed eyes, and even up close his eyes don’t look too bad or swollen. (Though, he has two pieces of tape on his forehead holding the suture ends up and out of the way. Again, I had no idea tape figured so prominently in the ocular-medicine world.)

The eye doctors don’t have a timeframe or projection for how long they will keep the eyes closed; that depends on his progress. They do say that when the vision is improved, removal of the tarsorrhaphy will be simple and painless. So, as with so much of the rest of Brad’s recovery, now we wait.

A note from Brad

Hi everyone. This is Brad, speaking through Kate’s fingertips. I’m sorry I haven’t posted anything in my own words on this blog for a long time, but I’ve never liked the idea of dictating to someone else, even in this manner. Besides, for a long time I was too sick to formulate any thought I felt was worth sharing. Now, however, I am feeling considerably better and more coherent, but my vision is still too poor to permit me to read, write, or type. Kate and my mother have been reading many of your messages and blog comments to me and I want to acknowledge them, thank you for them, and let you know that my spirits are good and that I am continuing to recover. I value your good wishes and engagement with my situation more than you can know. This is the hardest period of my life so far, but it will come to an end eventually, and I look forward to being able to communicate normally again.


Future vision

After the girls and I visited Brad two days in a row last week, we then went to San Diego for a little spring break. We had sunshine, pool and beach time, a meetup with good friends, and a lot of time to just read and rest. The girls have arrived at the age where it’s actually relaxing and pleasant to travel with them, and a change of scene was something we all badly needed. Meanwhile, Joe and Susan held down the fort here, visiting Brad daily. It was bittersweet to be on a family vacation without him, the more so as our seventeenth anniversary was on Monday.

Here in Sacramento, Brad continued about the same, eating a little and feeling a little better (albeit with ups and downs), but the big news has been about his eyes. Unfortunately, the promising improvement in his vision after the removal of the Prokera rings was extremely brief—possibly even illusory. By the end of Easter weekend he effectively could see nothing except a blur of light; his corneas now are entirely opaque, all blue. He has been increasingly down about the stagnant state of his vision, which has now been profoundly impaired for nearly two months, ever since it first seemed like he had a simple case of pinkeye way back on February 1. The total lack of improvement (indeed, the worsening) of his ability to see finally got to be too much. Meanwhile, we got word yesterday that cultures from his eyes had turned up positive for a rare bacterial infection, strep viridans, so he’s now had antibiotic eye drops added to his already considerable array of drops, ointments, and artificial tears.

His transplant team, too, has been concerned and finally agitated enough that Brad was sent out of the hospital over to the ophthalmology clinic, where he could see the top corneal specialist, the very eminent Dr. S. Getting him over there was quite a production, involving a transport team and an accompanying “action nurse,” and not surprisingly they were late for the 9:30 appointment. I was meeting them there, and as I waited I got terribly nervous that they were already back meeting with the specialist and I was missing it. As it happened, Brad’s arrival on a gurney, fully outfitted in protective gear, caused quite a stir in the waiting room—he was the VIP patient of the day for sure—so I doubt the receptionists could have missed it.

He was wheeled back and finally examined at length by Dr S, who at first asked a lot of questions about food allergies and whether Brad has ever had eczema (nope). Because the damage to the eyes is so symmetrical, he suspected it might be a rare eczema of the eyes. However, in the end Dr S feels that it was indeed graft vs. host disease, which is now ongoing but complicated by possible herpes simplex (an eye virus) and the definite presence of strep viridans (likely an opportunistic infection that arose after the Prokera rings were removed, but something that is not causing further vision impairment). Currently, there is damage to the epithelial (outer) layer of the cornea, as well as swelling and fluid in the middle layer, called the stroma, which has thickened like a bullseye. He said there may also be damage to the endothelial (innermost) layer of the cornea, but we won’t know that until after the epithelial layer heals and the stromal swelling resolves. I also asked whether he’s confident that the damage is limited to the cornea only, and he said he couldn’t be sure but there was no indication of inner eye damage. If there are no problems with the endothelial layer, healing in the other two layers should restore Brad’s vision; if the endothelial layer is compromised, however, he may eventually need a corneal transplant or other surgical intervention. (The endothelium can heal on its own but very, very slowly.) Dr S emphasized, however, that we are a long way from that.

Given that two months have elapsed with Brad getting both systemic treatment for the GVHD and topical eye treatments, Dr S felt that it was time to change up the treatment. The first step will be to greatly increase the lubrication of Brad’s eyes, giving him an ointment called Lacrilube hourly. Increased lubrication will, in theory, help the epithelial layer heal and resolve the scratches and tears there. In addition, Dr S noted that Brad’s lower eyelids roll in every time he blinks, thanks in part to the swelling around his eyes. (The technical name for this is spastic entropium. He still has some short, stubby eyelashes there and as the lids roll in, the lashes may be further scratching his eyes. (In fact his lashes and brows have been growing back in, much darker than they used to be, though his head is still bald; this contrast led Dr S, who was very cordial in manner, onto a chatty digression about interesting eyelash facts.) The fix for this was remarkably low-tech: Dr S rolled the lids out using his fingers and then stuck pieces of tape on Brad’s face. It turns out duct tape really can fix anything.

If these changes don’t help, there are two possible next steps. The first is a procedure called tarsorrhaphy, in which the eyelids are sewn or glued partially shut to promote healing. I am hoping they will proceed to this fairly quickly. The second is a treatment called autologous serum tears, and it was initially suggested by Joe, after doing some online research. Dr S was clearly surprised to hear it suggested by a layperson (Joe had passed the information along to me) but intrigued by the possibility and warmed to it very quickly. It involves making artificial tears from Brad’s own blood, stripping away the red blood cells to produce a unique serum that contains the growth factors and other biologically unique ingredients of real tears, which would promote healing.  Autologous serum tears are almost always made for outpatients, so there would be some logistical hurdles to overcome before that treatment could be made available to Brad in the hospital, but it’s a potentially promising avenue. Meanwhile, the ophthalmologists will be continuing to follow Brad extremely closely. It appears that his eye problems are just one more way in which his disease and its complications are very, very rare and surprise everyone.

All that is long and technical, so if you’re still with me, thanks. Long story short: there’s no immediate timeline for when Brad might be able to see again, and it may still be quite some time, but we have a much clearer diagnosis and a much better vision (even if that’s only metaphorical for now) of the plan for the future.

Father and child reunion

Several days ago I had asked Brad’s doctors if they could make an exception to the isolation rules of the bone marrow transplant unit and let him see the girls. They assented, but at the time Brad was still feeling sick enough that he wasn’t sure it would be a good idea. Now that he is walking more steadily and more alert, though, I suggested again that they come in to see him, and he felt more ready.

This afternoon we had a very happy and emotional reunion, all four of us. I waited until very close to the visit time to tell the girls (lest anything come up that would force us to postpone) and when I told Lucy, I said we were going to see someone and asked her who in the world she would most want to see. Her eyes and her smile both got wide and she said, “Daddy?”  (When he heard this, he seemed very flattered to be ranked above Taylor Swift.)

We arrived at the family visits room on the oncology floor to learn that an eye doctor had shown up to visit Brad just as he was leaving to visit with us, so we had to wait a bit while Brad got eye drops—which, in the event, made his eyes an unearthly and unsettling green color (with invisible pupils). His eyes were almost all of Brad that the girls could see; the protocol of visits demands that Brad wear a hat, gloves, gown, mask, and booties over his socks. At first both the girls found the weird-looking eyes a bit offputting, but some hugs (pictured) broke the ice. Irrepressible as usual, Lucy was so excited she could not stop dancing in the family visits room. Brad can’t see much but he could definitely see the movement of her dancing. Lucy’s exuberance was unusually, as everyone else—including the nurses—shed plenty of tears, but they were happy ones.

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We’ve had a lot of tough days and there will be more ahead, but this was a good one. And the girls and I are going back to see him again tomorrow.

An adventure

I’m not quite sure how nearly two weeks slipped by without an update, but that length of time indicates how dull and uneventful the hospital routine has become overall. Brad continues to improve very slowly and incrementally. He is eating a little more, though still is on full intravenous nutrition. His doctors and the dietitian do feel that he is absorbing a little more of the nutrients in the food he’s eating, and he is finding a few more foods appealing. The next step, when he’s eating more, will be to decrease the IV nutrition and increase his diet. I have been given a lot of handouts on what people with gastrointestinal GVHD should eat (the short version: mostly bland, easy-to-digest foods, not surprisingly). Overall the progress has started to be steadier but remains very slow.

There has been some news, though unfortunately overall not much improvement, with his eyes. We were all growing increasingly frustrated with slow, spotty, and uninformative responses from his eye doctors and so we all (Susan especially!) pushed the doctors for more clarity. After many, many consultations in which ophthalmologists ever higher up the food chain were called in for consult, it was determined that the Prokera rings he had in for several weeks were obscuring his vision rather than helping it. The steroid eye drops that were meant to treat his presumed ocular GVHD were, instead, obscuring his vision; the prednisone in the drops was precipitating out onto the lenses and clouding them.

On Friday, after several eye-doctor visits, he had the Prokera rings removed. Underneath, the ophthalmologists could see that damage to the epithelial layer of the cornea remained. However, after exams they concluded that it might not have been ocular GVHD at all; instead, their new working theory is that he has a viral eye infection, which they are treating with antiviral eye drops (no more steroid). We’ll see if those help. At first Brad was very, very optimistic about this change and got a huge boost from the removal of the lenses. While his vision is somewhat improved, however, it’s still not clear enough for reading, writing, or recognizing faces. That said, he has a little more functional vision for operating independently in his room, and there’s hope that more vision will return if the drops work as the ophthalmologists are hoping. Meanwhile, his nursing team has arranged for him to get occupational therapy to help him function more effectively despite the limits on his vision.

In other news, Brad has been cleared for (and is up for) more walking and has even been able to go outside—not just outside of the room, but outside of the hospital to feel a bit of fresh air. Doing so involves him suiting up in a disposable gown, a paper cap, a mask, gloves, and booties and, though he walks in the halls and while outside, he takes a wheelchair down in the elevator. Yesterday I wheeled him down, but by the time we got there a sudden and very breezy rain shower had started up. We went out anyway, but his hat quickly blew off and there was no place to be outside and shelter from the downpour, so we beat a quick retreat. However, Brad sat for a while in the vestibule at the hospital’s main entrance, where he could feel the breeze and some fresh air. When we got back to his room, he called it an adventure.




Last week, a blood sample from Brad was sent off to check his degree of chimerism—that is, what proportion of Brad’s blood now has the DNA of James, his donor. (A chimera, scientifically and medically speaking, is an organism containing two types of genetic material—and post-transplant, if all goes well and the graft succeeds, patients will have their own and their donors’ DNA in perpetuity.) Although this test is done routinely after allogeneic transplants, we were a bit concerned about it, because over the last few weeks Brad’s once-high white blood cell counts (remember those? the things we were so focused on before he got terrible graft-versus-host disease?) have been steadily dropping.

His physicians said this could indicate that the graft was failing or sputtering out, though, they said, that would be very surprising given his level of GVHD: the disease-causing activity of the graft was a pretty good indication that it is hard at work in his body. Still, however slim the chances, we weren’t enjoying hearing about that possibility. After all, every single piece of bad news or medical setback that Brad has experienced during his cancer diagnosis and treatment has been preceded by a doctor (sometimes more than one doctor) telling us that whatever eventually proved to be the case would really be very surprising.

Well, the chimerism test came back last night, and its results, for once, did not follow this rule. Brad is, officially, 100 percent a chimera and aspiring no more: all of his blood cells are the product of the graft and display James’s genetic material. This is great news, obviously; any problem with the graft would have presented Brad’s doctors and us with some very difficult choices regarding whether to give Brad more stem cells (thus risking more severe GVHD). Happily, those are choices we now don’t have to face. It’s not entirely clear what is causing the lower white counts, but they are now holding steady and since Brad is still on an extremely large number of medications, it’s likely one of them is the culprit.

In other news, small improvements continue with his eating, though his gut symptoms remain and progress is very slow. I’m making him a lot of broth and easy-to-eat things like chicken soup with tiny pasta. Yesterday I stirred an egg into some soup for a little more protein and that went over well. Today I brought in some buttered toast strips for dipping (a hit) and a bit of homemade apple puree (no verdict yet). The total volume he’s eating is still very small, but he is enjoying the taste of food, which is great to see. It all reminds me a little of starting a baby on eating solid foods, though I’m thankful to say Brad is a much less messy eater and is much handier with a spoon than your average infant.

Unfortunately, Brad’s eyes continue to be a problem and his vision has not measurably improved, though the eye doctors are saying that the Prokera rings are continuing to heal—just very, very slowly. The GVHD in his eyes apparently stripped away the epithelial layer of the eye, just as it stripped away the epithelium in his gut, and healing for both will be a long, long process. But for today, we are very pleased that Brad has fulfilled his long-held goal of becoming a chimera.

Leap Day

Today, as you’ll have seen, the internet is filled with references to the fact that it is that rare date, February 29. Frankly, of all the months I have lived in my entire life, this is the one I am most eager to move on from and the least excited about having an extra day added to. But, of course, the date and my feelings about it are really just a trick of the calendar. Brad’s condition won’t have changed just because tomorrow is March. But it feels hopeful, somehow, to move on from the dark days and, honestly, occasional despair of February.

And there is hopeful news as we move into the next month, and as Brad wraps up two months in the hospital. Over the past several days, Brad has continued to improve. His appetite remains very minimal but he is tolerating little sips of broth and some small bites of rice and saltines (the classic food of invalids) yesterday and today. For tomorrow, he has asked for homemade chicken noodle soup, so I’ll be stopping at the store for ingredients for that on my way home. From now on, the most important elements of his recovery will be his expanding his diet and being able to support himself nutritionally (which will be a long, slow process) and the continued healing of his gut, which was profoundly damaged by the GVHD. His vision continues to be compromised but the corneal specialists came by yesterday and said the ProKera rings (the lenses made from amniotic membrane, which heal corneal damage) are beginning to dissolve as intended, and thus his sight should slowly start to improve. He’s also walking a bit, albeit slowly, but has been cleared to walk in the halls of the transplant unit and that should help him get stronger. Today after his lunch we took a walk—two circuits of the hallway. His doctor is very pleased and they are cutting down on his doses of heavy-duty steroids, which should also help him feel better. And he’s had a couple of phone calls with the girls after a long hiatus during which he didn’t feel up to conversations. They are catching him up on news from school and the sporting world. (As I write this, I just heard Lucy tell him that Serena Williams got upset in the Australian Open, which was news to him.)

All of that represents a real jump forward from, say, two weeks ago. So: Happy Leap Day, everyone. And now, onward to March.


Brad has had a small milestone over the past 24 hours: he was, for the first time in more than three weeks, able to take in some nourishment by mouth without too much difficulty. His main oncologist, who is back as his attending physician for these two weeks, encouraged him to do so, emphasizing that being able to eat normally and support himself nutritionally with his own intake is a key marker of recovery—and crucial to being able to go home. So, over the weekend Brad requested a chocolate milkshake, but even a couple of small sips of that proved too rich and challenging—so he has retreated to the safety of broth, which is easier to stomach. Last night he took in about an ounce of chicken broth and he had a few sips again today at lunchtime. He had a bit of nausea, but it passed quickly, and he said the broth tasted great—a good sign for his appetite returning someday. There’s still a long way to go, but that’s a start, and a good one.

Speaking of food, I’ve been meaning to send a message from the home front as well. We have been amazingly well taken care of by many, many friends with dinners and treats and errand-running galore, and I just want to express my huge gratitude to everyone for the support. Joe and Susan (Brad’s parents) join me in sending out thanks to all of you who have so generously given us both literal and figurative nourishment. Planning and cooking dinners every night sometimes feels overwhelming, and through a great deal of kindness from local friends and acquaintances this task has largely been taken off our plates (so to speak). That has been a huge stress reliever at this very stressful time.

I’m also beyond grateful to everyone who has offered to take the kids for a few hours (or much longer!), sent or brought over flowers, commented here, texted a note of encouragement, emailed or mailed a card (I do read them out to Brad, whose vision is still very blurry), or just offered a hug. All of your kindness and support are keeping us going through this much longer than anticipated ordeal.

Week in review

Somehow this week—Brad’s seventh in the hospital—slipped by without me updating at all. There really hasn’t been much news to report. Brad’s vision has continued about the same, with maybe a very slight improvement. His gut GVHD has improved a little bit, but he’s had nausea and remains unable to think about eating. The predictions that his recovery will be long and very, very slow seem to be holding true. He is, however, more alert during visits and more able to walk a bit in the hospital room, though he doesn’t have much energy, to say the least.

As I write this, Brad is having his third photopheresis treatment, with the machine I wrote about last time. He has slept through it (thanks, I think, to Ativan; also, his days and nights are a bit switched so he’s been sleeping much later in the mornings). They will do another one tomorrow morning, and will continue twice-weekly photopheresis for at least a month. It may end up being a long-term maintenance treatment to manage his graft vs host if the GVHD becomes a long-term issue, which is a real possibility.

I’ve heard from a few people that the whole concept of graft vs. host disease is deeply confusing. It sure is. Everything about Brad’s disease seems to me counterintuitive, starting with the fact that he has really only seemed sick when he is getting treated. (But make no mistake, his cancer is very aggressive even though it mostly didn’t make him feel particularly ill.) I’ll try to explain a bit more about what is happening with the GVHD to make Brad so sick.

Most people, I think, are familiar with the idea of rejection in organ transplant—if you were to need and get a kidney donated from someone, for instance, there is a good chance your own immune system would recognize it as a foreign body and would attack it. Thus, organ transplant recipients are given immune suppressants. In a stem cell (or bone marrow) transplant, rejection works the other way around. Brad’s immune system is no more; instead, the immune system (in the form of stem cells) is what he got transplanted.

As the new immune system settles in and starts to grow in the process called engraftment, the new immune system looks around, sees that everything around it is a foreign body, and in many cases just freaks the hell out (forgive the not-very-technical terminology) and attacks at random. That is why GVHD can pop up in so many places and seems so weird and stubborn. In the case of Brad’s GI GVHD, the new immune system has stripped away the epithelial lining of the entire gut. On his skin it gave him rashes, and it especially made his hands’ skin swell and peel. And there are several other possible manifestations, like Brad’s rare acute ocular GVHD. Brad gets immune suppressants to keep the new immune system somewhat in check (currently he gets two forms of these drugs), but obviously in his case they have not fully tamed the immune response; he will remain on immune suppressants for many months, even after he comes home from the hospital.

The reasons why Brad got GVHD and others with sibling-matched donors don’t are really just unknown and probably unknowable. But it may have something to do with the fact that this whole complicated, counterintuitive treatment of stem cell transplant is still relatively new and not completely understood. When James and Brad were tested to see if James was a match to be a donor, they checked a number of proteins or markers, called HLA (human leukocyte antigen) markers, to see if they were a match. They look at ten specific ones; thirty years ago, when bone marrow transplants were brand new, they only had four markers they could check for. It’s now known that there are many, many other markers that medical science just doesn’t have the technology to test for yet. What that all means is that there’s no such thing as a guarantee of a perfect match, even though all ten of the markers they tested in Brad and James were a match. With a matched sibling-donor transplant, we’ve been told, the chance of severe GVHD is somewhere around ten percent, so—just as with Brad’s initial cancer diagnosis of an extremely rare form of lymphoma—he has been just damned unlucky. (By the way, for anyone new to the blog or wondering about the backstory, I recapped the pre-transplant phase in our very first post.)

The tiny bit of silver lining in all this nasty GVHD is that  it does serve as an indicator that the new immune system is functioning well (if with a certain amount of confusion about its ultimate goals.) And in the big picture, that immune system has a very important job: fighting Brad’s cancer when it returns. If it can do that, all this GVHD, however awful, will be worth it.

A day of action

Yesterday was an unusually busy and eventful day at the hospital. Since generally things there move slowly, I wasn’t expecting the various medical teams to get Brad’s new treatment rolling as fast as they did. But by 9:30, the transport team was at Brad’s room to take him down to the Interventional Radiology department, where he would get his new chest catheter. There had been some debate between giving him a port (under the skin) or what is called a tunneled catheter, with external lines. He already has one of the latter, and they decided to give him a second one, just on the other side of his chest. The port would have required a week of healing, thus further delaying his treatment, so the new catheter it is. (He’ll retain the first one, which is smaller, for delivery of his many IV medications and the nutrition he is still getting; he hasn’t been able to eat for two weeks.) The new catheter is a much bigger gauge than the pre-existing one; they need a bigger tube to do the photopheresis treatment effectively and efficiently.

Brad was very anxious about the procedure and got quite a bit of Ativan to help with that. Then he was well and thoroughly sedated with Fentanyl during the procedure itself. It must have worked great, because when he woke up he asked me when they were going to do it and was surprised to learn that it was done. He remained fairly out of it for the rest of the day, not surprisingly.

I thought the insertion of the catheter was as much prompt action as the hospital was likely to muster in a single day, and Brad’s nurse had told me that he expected the photopheresis to start on Tuesday (thanks to the upcoming holiday weekend). But shortly after we arrived back at Brad’s room, the apheresis doctor stopped by to ask if Brad had gotten the catheter placed and say that her team would be back in a couple of hours to start the treatment. They arrived at 2pm, bringing a huge rolling unit that looks like something out of 1980s scifi, complete with turning dials, spinning parts inside, and lots of R2D2-like bing and boop noises.

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This is the photopheresis machine, a self-contained unit that pulls out Brad’s blood through the new catheter line, sorts it, treats the T-cells with radiation, and returns all his blood to his body. The process takes about two hours (plus some time for the machine to warm up). By coincidence, the photopheresis nurse was the same nurse who worked with James when he donated stem cells (which is done by apheresis, using a similar machine). Brad will have a second treatment today, and then two every week going forward.

Brad more or less slept through the whole photopheresis, thanks to a second dose of Ativan. He also dozed his way through a visit from the eye doctors, who felt the new lenses are starting to work and his eyes look better, and from his oncologist, who has been out of town but came by to see how he’s doing and talk to us about the photopheresis.

I’m very glad the hospital managed to move fast to get Brad started on the treatment he needs, even though we’ve been cautioned to expect progress with his stubborn GVHD to be slow and his future hospital stay to be very long. And now, after that unwonted burst of activity, we return to our regularly scheduled hospital time: waiting.