Dear friends and family, we had hoped that we could let “no news is good news,” from the last post, stand as the last-ever update on this blog. We are terribly sorry to say that isn’t the case. There’s news, and it is not good. Yesterday, we learned via a PET scan that Brad has more evidence of cancer. We are awaiting a biopsy to confirm the diagnosis, but his oncologist believes it is almost certainly a new type of cancer, a B-cell lymphoma called post-transplant lymphoproliferative disorder. It is caused by an Epstein-Barr viral infection, which his immune system (suppressed by the post-transplant medications) cannot fight effectively; the B cells proliferate aggressively (hence the name), causing tumors. This is a rare, but known, complication of immune suppression after transplant and is more common in solid-organ transplants.

Needless to say, this was the very last news we wanted to hear or have to share. Brad’s course of treatment is not yet certain, pending the biopsy. It is, however, clear that a very difficult road for our whole family lies ahead. We are grateful for all your good thoughts.

—Brad and Kate

It’s been a long time since I updated. In this case, the old cliche has been true: no news indeed has meant good news. Brad has been recovering, slowly in some arenas and more quickly in others. The home rehab company that provided him with intensive physical and occupational therapy pronounced him a star patient, and their services have ended, which means things are much quieter around our house, with far fewer appointments taking place in our living room. Thanks to them and to his own perseverance and hard work, his strength has increased greatly and he’s able to walk much farther, albeit slowly. This morning he walked the girls to their summer day camp. His vision has also, after a long plateau, suddenly seen a rapid improvement, allowing him to walk more independently. (He’s also learned to use a white cane.) Recently he realized he can see just well enough to read extra-large text on the iPad and also to play chess against it. He has to hold the device close to his face and squint a bit, but that’s is a huge advance.

In other news, Brad was recently back in the hospital with a minor infection that proved to have originated in one of his central lines (the chest catheters used for IV nutrition and for the photopheresis—a blood treatment that combats his graft vs. host disease). In the end, his physicians decided to end his IV nutrition (which has made caregiving at home vastly easier) and remove both chest catheters. So, for a few brief days, Brad was completely free of any IV lines for the first time since May 2015. That didn’t last long, however, as he has now had a port (an under-the-skin line) put in to use for photopheresis, which his doctors expect him to continue getting indefinitely. The advantage of the port will be that it is much less susceptible to infection and requires less specialized line care.

There’s not much else to report, medically speaking, but on a personal note Brad is now well able to have visitors at home and has really been enjoying time with friends. If you’re local and would like to come by, please, give him a ring or shoot him a text (he’s now adept with using his phone despite his low vision), or contact me. Recently, his dad Joe was here for a couple of weeks, staying with Brad while the girls and I visited Canada and their grandmother, uncle, aunt, and cousins. We swam and kayaked, played with cousins, and had a great time. I was able to sneak away for a short trip to New York with friends (thanks to the kindness of Brad’s mother Susan, who looked after the girls), where I got the chance to see a couple of Broadway shows, including Hamilton. So, while things are not quite back to normal, and won’t be for a long time, they have certainly been looking up—and all that occurs to me in conclusion is a favorite quote from Hamilton, the musical: How lucky we are to be alive right now.

It is hard to believe that four weeks have gone by since Brad came home from the hospital. In that time I kept meaning to update the blog to say he’s been doing very well, but have never quite found the time. The needs of his care have been fairly overwhelming for me, honestly, despite lots of good help. Brad’s mother was here helping tremendously for the first couple of weeks, and I also hired round-the-clock caregivers. It’s essential that we have someone here, as doctor’s orders (and the assessment of his physical therapist) mandated that Brad never be left alone in the house. I’m so grateful every day that we were able to find home attendants, because without them juggling everything would be impossible and beyond exhausting.

The focus in these weeks has been on rehab to get Brad stronger and more independent. Our insurance company, to my astonishment, went out of its way to find and authorize service from an integrated, in-home rehab company with a team coming to the house to provide intensive physical therapy, occupational therapy (in this case, helping Brad adapt to his impaired vision), counseling, and guidance from a dietitian. They come about 20 hours a week, in total, and in addition to these visits Brad has clinic appointments and a twice-weekly home health nurse, so our household has been a very busy one. The rehab is going really well—over the past weeks Brad has gained some energy and quite a bit of strength, which was sorely lacking after so many months in the hospital. He can now take walks of up to 20 minutes and much better able to climb our house’s many stairs. In the past week, he has even come up to the top floor and helped put Lucy to bed—though thanks to his ongoing vision issues, she read stories to him.

A word about his vision: It’s still very much clouded and he remains functionally blind, though he has regained a little more peripheral vision and some of the corneal scratches and swelling are starting to clear. Progress is, however, very slow, and the ophthalmologist following his case can’t say for sure whether the remaining cloudiness is healing injury, permanent scarring, or some combination of both. If his vision does not clear, the treatment—far, far down the line—would be a corneal transplant. Because it is likely to be many months, he’s trying to learn some technological adaptations (for using his phone and, we hope, a computer) and workarounds for mobility. We’re adding routines and particular spots for items so that Brad can find what he needs easily, and I am pleased to have an excellent reason to make the girls pick up their stuff, since anything left on the floor would be a tripping hazard. All in all, we are slowly adjusting to and settling into this new phase, and while it’s still going to be a long haul, we are all enjoying not being at the hospital so much.

Many of our readers will have heard this news already, but I wanted to add an official announcement. Brad is home! Yesterday we busted him out of the hospital (okay, maybe wheeled him out would be a more accurate characterization) and brought him back to our house where he belongs. (Pictured below: him lying on his rightful couch.)

The days leading up to his discharge were quite a whirlwind, getting a lot of things organized—especially the home nursing help I’ve hired to stay with him overnight, which is making everything vastly easier. His care needs are still profound: he takes more than 30 pills daily, plus eye drops and on-demand medications; he’s on intravenous nutrition (hooked up by yours truly) at night; and he needs a lot of help on the many flights of stairs in our house. But he ate dinner with our family last night, at the dining room table, and the girls were about as happy as I’ve ever seen them.

His doctor, before we left, said he was there for a total of 129 days. Brad immediately snapped back: “Nobody keeps me in the hospital for 130 days.” And then, four months to the day after he received his new stem cells, we left.

 

 

The last time I updated was a milestone for Brad, day +100 post-transplant. Since then we’ve passed a few more markers and anniversaries, but I will start with the most recent and most important so far. Yesterday, Brad had a PET scan, and it was clear, showing no evidence of cancer.

It’s routine to do a PET at three months or so post-transplant, and nobody was really expecting to see a relapse at this point, but it’s obviously a tremendous relief to have that confirmed. It’s also a reminder of what his ordeal has all been for, to fight the cancer that would certainly have killed him. He will have more PETs in future (next one likely at six months post-transplant), but we can worry about those later. For now we’ll celebrate this one.

This has been a big week in other ways. Yesterday marked four months since his admission for the transplant. And Monday, by chance, marked exactly a year since Brad went into the emergency room with the ruptured lung tumor that signaled to all of us that his cancer was more aggressive, and more dangerous, than anyone had thought. Between his chemo treatments and the stem cell transplant, he has spent almost exactly half of the past year hospitalized. My memories of driving him into the hospital after what had seemed like a perfectly ordinary Saturday (I put in my summer vegetable garden; he took Lucy to the pool) are keen; I ran every red light between here and the hospital, and we were both terrified at his symptoms and had no idea what was happening. Thinking of that day is a reminder, in many ways, of how far he has come. Brad is greatly weakened and still ill, but we have a better sense of what we’re dealing with. He’s on the other side of a debilitating but extremely promising treatment, not facing a completely unexpected and unknown ordeal. For that, and for the clear PET scan, we are deeply thankful.

Last week we had a large family conference with Brad’s entire medical team to discuss his prospects for coming home. It was very productive, and we all concurred that discharge needed to be slowed down until he has a little more independent mobility and slightly less overwhelming care needs. In fact, our caseworker from his health insurance company called me to say she felt he still had too many complications and would be safer, for now, in the hospital. When the insurance company says, “no, no, we think we’d rather pay for more hospital time,” well, you pay attention. So now the entire team’s focus is on giving Brad the skills and retraining he needs to operate safely at home with his compromised vision.

The tarsorrhaphy (suturing shut of the eyelids) presented particular difficulty for his home care, as the care for it is very time-consuming and tricky. Happily, the corneal team concluded that it has done its work in helping heal the corneas and removed it two days ago, to our surprise. In its place they inserted something called “bandage lenses,” clear protective contacts. Brad’s vision has improved somewhat, particularly the peripheral vision, which is encouraging, but it’s still not nearly good enough to help much with independent function. A rehab team is coming to assess and work with him tomorrow, and I’ve also been in contact with some vision-rehab specialists who are going to give him some retraining.

Meanwhile, at home, I’ve been cleaning and reorganizing, starting to get things ready and set up the rooms he’ll primarily be using to be more functional for him. I’m also, with help, looking for caregivers, as we’ll be hiring in-home help, especially at first. It’s starting to seem more real that he can come home—and also more exciting. Last week, going into the family conference, I felt very apprehensive. His care seemed so overwhelming that it would be unmanageable at home. But now that we are addressing his barriers to functioning (such as his lack of confidence with reduced vision), the prospect of him coming home feels like great news—but even that is not as great as that clear PET scan.

So. Today is the hundredth day post-transplant. We haven’t been paying much attention to the calendar and counting of days that used to govern everything, but this one I noticed. It seemed like a good day for a status report.

Day 100 is traditionally seen as the cutoff between a diagnosis of acute graft-vs-host disease (GVHD) and the chronic variety, or ongoing issues with GVHD that are usually less severe. Brad’s GVHD is greatly improved from its harshest manifestations of a couple of months ago, but he does have some ongoing issues, including stomach pain when he eats. The good news there is that he’s eating, and even having some solid food—the other day I arrived at lunchtime to find that he’d had half a grilled ham and cheese sandwich. That represents a big advance. He remains on IV nutrition, but the doctors have adjusted it so that he only receives it at night—and thus he is able to be disconnected from the IV completely during the day. They’ve also shifted all his (considerable number of!) medications to oral versions. That has been great, and enables us to take him out for walks untethered—a huge sense of freedom after three months tied to a an IV pole. It’s turned warm here, and he likes to go over to the shady and relatively quiet breezeway in between the buildings of the Cancer Center, across the street from the hospital.

His vision continues to be a problem and the tarsorrhaphy (in which his eyes were sutured shut) is still in place, and likely to remain so for some time. The next-step treatment, autologous serum tears made from his own blood (so they mimic his natural tears precisely) is now underway—it’s a lengthy process to make the tears and then quarantine them, however. We expect to get them in 3-4 weeks and are hopeful they will speed healing of the corneas along. For now, however, he functionally has no vision, though when the eye doctors open the tarsorrhaphy he is noticing slightly improved peripheral vision.

Speaking of a timeline of 3-4 weeks, we are also getting some indications that the medical team may be ready to send him home within that timeframe. That, of course, depends on continued improvement. But, with a view to him eventually being at home, the medical team is getting him some more physical therapy to increase his strength and ability to handle the challenges of being home, as well as occupational therapy and other services to help him cope with his functional blindness. With the help of some friends, I’m working on lining up reliable in-home care. While it all seems a bit daunting, we are very much looking forward to him being home at some point.

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.

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.

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.

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.

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.