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.

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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.

 

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Official

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.