Back in Sacramento

As some of you may have already heard, we got some good news recently: Brad had a PET scan a few weeks after returning from New York, and it was clear. Also, his recent blood tests have shown no traces of the Epstein-Barr virus that was causing his B-cell lymphoma.

As a result, the doctor in charge of the clinical trial in New York has moved him to the second phase of the trial: monitoring. This means he won’t need to return to New York in the near future, but that the treatment offered at Sloan-Kettering will still be available if the cancer should return. As part of the monitoring phase, he’ll be scanned periodically to check that he remains in remission.

We’re all deeply relieved that he has no active disease, is feeling relatively well, and is here in California instead of New York. He is now back to the long slow recovery that the new cancer diagnosis in the fall so rudely interrupted. Brad is able to see friends often (don’t hesitate to text or call Brad if you’d like to have lunch or coffee; his vision still isn’t up to checking email) and we are able to spend a lot of time together as a family—a boon for us all.

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A dispatch from New York

Editorial note: Kate here, posting this on Brad’s behalf–he, in New York, dictated it to his mother Susan. Brad’s notes on today’s developments!

Today was a very significant and positive day.  First of all, we got the results of Sloan Kettering’s scan, which showed only one remaining spot of elevated lymphatic activity in my body (in my lung), which is testimony to the ongoing effectiveness of the Rituxan.  Moreover, their blood tests could not detect any signs of the Epstein-Barr virus that caused the B-cell lymphoma in the first place.  Nevertheless, my doctor here decided to go ahead with the clinical trial treatment because, as he said, we have to assume the spot in my lung is lymphoma.  And there may be undetected traces of the Epstein-Barr virus hanging around.  So after some due or undue delays, I had my first infusion of genetically modified T-cells this afternoon.  For those who are curious how these T-cells work, they have been modified to contain the Epstein-Barr virus receptor site, with the goal to destroy any residual EB virus.  In essence, the strategy has been and remains to degrade this my second type of lymphoma with the Rituxan I was given at UC Davis and to eliminate it for good with the T-cells I’m getting here.
So far I am experiencing no ill effects whatsoever from the treatment and don’t anticipate any based on what my doctors have told me about other patients.  Indeed I have been feeling very good during my entire stay in New York (touch wood) and have been having a great time with my parents, who have been a great help with the many logistics we have been negotiating here and with whom I have been happily sampling the many delights New York restaurants have to offer.  Our accommodations are very comfortable and convenient thanks to Kate and of course New York itself is an exciting stimulus.
Here’s a picture of the treatment in progress: img_0902

A new treatment

Since our last post, quite a bit has happened, but we finally have some definitive news to share. Shortly after we posted, Brad began Rituxan treatments. They were done in the cancer center, once a week, and had very few side effects beyond making him feel tired. (He even kept his beard, which has regrown since his transplant.) At the same time, his oncologist drastically reduced the amount of immune suppressant medications Brad was taking, in an effort to get his immune system back up and running so it could effectively fight the Epstein-Barr virus that was causing the new cancer. We know the immune system got right to work, because he had a new flareup of graft vs. host disease—fortunately, it was comparatively mild and came in the form of a not-too-bothersome skin rash. This has been quickly controlled with steroids, and now Brad feels relatively well.

The best feature, by far, of the past month has been that Brad’s doctor cleared him to fly (more on future destinations in a minute), and so for the week of Thanksgiving we took a family trip to Hawaii. Luckily, Brad got on the steroids right before we went, and while we were there he had comparatively good energy. A family vacation was exactly what we all needed and we got to spend a lot of time poolside and enjoying ourselves at the resort we stayed at. Brad was able to go swimming, we met up with good friends who happened to be vacationing nearby, and we took a day trip for shave ice, shrimp truck lunch, and checking out the waves on Oahu’s North Shore.

We got back last Friday and on Monday Brad had a PET scan to find out how well the treatment has been working. The news was overall positive: while he still has evidence of disease and a few lesions, the Rituxan (combined with reduced immune suppression) worked to shrink the cancer considerably. Its results were a lot better than his oncologist had initially cautioned us to expect. It feels very weird to say that a scan showing cancer is good news—but compared to how much cancer there was before, it really is. It also leaves Brad eligible for a very promising clinical trial, one his oncologist feels is his best treatment option. The trial takes place at Sloan Kettering in New York (yep, 3000 miles away) and now that we have scan results, Brad’s first appointment is next Thursday. (Let me just say, it is taking a lot of restraint not to riff on the lyrics to “New York, New York” in this post.)

So, we are now in full logistical scrambling mode to make this happen. Kate will stay home with the girls, whose primary concern is whether their dad will be home for Christmas. (It’s touch and go; the treatment lasts for 3 weeks, so we just aren’t sure if they can complete it in time for him to fly home.) Brad’s parents will go to New York to stay with him, and we are so very grateful to them for their invaluable help. For any of our readers within easy distance of New York, Brad’s treatments will be just once a week, and he will have a lot of down time and would love to see friends. If you’d like to visit, call or text Brad directly (or if you don’t have his number, please message Kate and I’ll put you in touch). We’ll update again when there is news from Manhattan.

Biopsy results

We wanted to post a quick update on our news of nearly two weeks ago. Earlier this week, Brad had a liver biopsy, and on Friday afternoon we got the results, which confirmed indeed that he has a new kind of cancer. This time, it’s a diffuse large B-cell lymphoma, which is a fairly common type of lymphoma but in his case is a post-transplant lymphoproliferative disorder, prompted by his Epstein-Barr viral infection. His oncologist is proposing to treat it with rituxan, an antibody therapy that has been very effective against B-cell lymphomas. (In general, there are more effective treatments out there for B-cell lymphomas than for the rarer T-cell types, so that’s a glimmer of good news.) Rituxan is usually better tolerated and less hard on the body than traditional chemo regimens, an important consideration given Brad’s weakened post-transplant state.

Treatment should start next week, and given how fast this new cancer has been growing we are both very glad they have a plan and are moving quickly.

News

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

Three months home

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.

Meanwhile, back at home…

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.