Abba Z"L Updates

Dear Friends and Family,

I hope this note finds you well and that (if you celebrated it) you had a meaningful Passover. Things in Boston have been less celebratory since last I wrote, but we are optimistic that, as of yesterday afternoon, we have finally turned a corner and are heading in the right direction.

Where we left off was Abba, just before the start of Passover, had checked in to a deluxe room in the ICU to get some help overcoming his graft v. host (GVH) flair-up. He got better and then worse. Much worse. It was really frightening. Miraculously, a completely new treatment path started a couple of days ago has been working and for the first time in days he is fully alert, talkative, and even showing signs of his sense of humor returning. Here’s the basic course of events:

In an effort to determine precisely where the GVH was so they could attack it more directly the doctors had Abba do an endoscopy with contrast. For those unaware, contrast is a special dye that allows us to see the innards with far better resolution. Unfortunately the dye had iodine in it and Abba’s kidneys didn’t take too kindly to that introduction. His kidneys shut down and as a result, toxins and fluids were building up in his body.

He was put on dialysis which worked a little at first, taking off fluid, flushing out toxins, but then his blood pressure started to tank and he became less and less capable of communicating. He also had not had nutrition for days which likely contributed to his uber fuzziness. To further complicate things his skin was super dry and super sensitive and so combining that with the fluid, and the blood thinners, he was having trouble with his skin breaking open and then not clotting completely. With all the swelling there was also a moment of panic and a discussion of needing to cut off his wedding ring to save his finger but fortunately the team was able to reduce swelling sufficiently to safely remove the ring with no harm. And as time ticked on he was less and less capable of staying awake and when he was awake only able to communicate with slight head nods.

While all of this sounds awful there are some very good things in the mix. First, the GVH was in his gut. Why is that good? Because it could have been so much worse. Imagine what sort of conversation we would be having if the GVH was in his lungs, heart, liver, or brain. So gut, ser gut. Second, he’s been in bed now for weeks and has no respiratory infection. This is a guy who used to get pneumonia just by thinking about getting pneumonia so not having something like that now is fantastic!

His treatment has been nothing short of remarkable. While his doctors have been good his nurses have been miraculous. There is a new law in Massachusetts that requires a nurse for every ICU patient which means he has a single nurse who does nothing but take care of him at all times. Both attention to detail and continuity of care have, as a result, been spectacular. They are truly the reason he is doing as well as he is. For example, they used a combination of regularly moving him (roughly every couple of hours), rubbing his back during those turns, keeping the bed at just the right angle to control coughing. They even worked with him so in his weakest state if he could clear his through with a gentle cough they would quickly grab the upcoming sputum using suction (which was not easy since his mouth and lips were incredibly soar and his gag reflex is as strong as it has always been).

They also have some very cool tools at their disposal including a bed that is capable of sending concussive waves through his chest to help keep unwanted things from sticking around in undesirable places. Picture driving his hospital bed over a washboard. They have been keeping his temperature constant (dialysis and generally being ill can mess with your core temp) using a constantly adjusted full body heating pad. It looks a bit like a camping air mattress with long inflated chambers and it is connected to a device that fills those chambers with hot air.

All in all, however, it has been the ability of his nurses to observe the little and the big and separate wheat from chaff that has been most amazing. During morning rounds the docs all marched through the daily numbers and the current and past meds, but it was the report from the nurse that carried the most weight. In fact it was one of his nurses that noticed that during the brief times he was off of dialysis his numbers all improved (until fluids and toxins got bad again) and it was that that ultimately lead the docs to find his current treatment (which is now working).

As of today Abba remains in the ICU with Eama by his side. What is different this morning, maybe even for the first time since my last update, is he was able to report far more complex thoughts. For example he explained to Eama, when he woke up this morning, that he dreamed of food last night—McDonalds. While usually I would say dreaming of McDonalds is a sign of illness, in this case it is a sign of recovery. He also repeated several times this morning that he is alive. This repeated reminder was a mixture of excitement, a bit of disbelief, and his usual practice of making sure everyone around him knows that he is not one to be counted out; he is a fighter and lover of life.

The latest treatment, which appears to be working, is he has been put on something called IVIG which is an immunotherapy infusion. As a result of the IVIG he has been able to tolerate dialysis (now turned all the way up to a level pulling 200cc of fluid off an hour—hasn’t been strong enough for that up until this point) and he is no longer on any of the blood pressure support drugs (no longer needs them). He is not out of the woods yet—the team reports that he still needs to have 4-5 gallons of fluid taken off of him (at 200cc/hour that is somewhere in the range of 75-95 hours)—but the fact that they are able to take fluid off (which they haven’t been able to do for days) and that he is now alert and communicative is such a good sign!

We are cautiously optimistic that he is now on the path to recovery from this unfortunate twist. This morning I asked what the theme song for this moment might be. You may not know this about him but he is a synesthetic and, when he is not ill, hears some song playing in the background most of the time. I suggested Bridge Over Troubled Water by Simon & Garfunkel, When the Levee Breaks by Led Zepplin, or Black Water by the Doobie Brothers. Without any hesitation he immediately responded, “Blackwater.”

So—where to from here? Assuming he continues to improve the way he has and the way we expect he will, he will eventually be moved out of the ICU back into the transplant unit and then out of the transplant unit into rehab before getting to return to the apartment. This is a slow road, but will hopefully be a boring and uneventful journey. Think of this as a slow ride in the cushiest Cadillac, not a fast trip in a road hugging Italian sport car. As a result of all of this, however, the same communication restrictions continue to apply. I’ve been passing along all of your well-wishes and they have been greatly appreciated, but please do not be offended or read anything into receiving no response. It simply means all energy is focused on Eama and Abba and recovery.

This morning, as we had that back and forth over music, I started thinking about other songs over the years that might also be thematic of this moment. Abba was born in 1951 and so for no reason in particular I created a playlist with a single song from every year, then till now. Some you have probably heard, some maybe not, some pretty cheesy, but here they are, in chronological order for your listening pleasure (and on Spotify):

Love,
Ariel

Dear family and friends,

Happy Passover (or as those in the guttural-know would say, Chag Sameyach l’chag Pessach)! I am writing to you from Boston. I arrived a couple of days ago and have been rather occupied since arriving.

Under normal circumstances the lead up to the start of the holiday would including a ton of cooking, and cleaning and then the night before the holiday starts there would be a ritual search of the house for traces of non-Passover food (Chameytz) followed by Bachorim (first-born males), which both Abba and I both are, fasting until seder the following night unless we happened upon (which coincidentally we always did) a party celebrating someone’s completion of a course of study (a siyyum) at which he and I would be obligated to break our fast to celebrate, all leading up to seder (the rite-filled meal that starts the Passover holiday). That first seder (outside Israel, because we were nervous about ensuring we had the timing right we hold two seders even though in Israel they only do one) is slated this year to be held tonight. The plan was to have an intimate seder in Chez-Benjamin-East with me, my Eama and Abba, Nadav and Lindsey, and our cousin Leslie.

Nadav got the flu earlier in the week. Though he is doing better he now out of an abundance of caution we had to cancel his trip. Given that he and Lindsay share a bed, even though she was feeling fine we had to cancel her visit as well. Eama recognized that this was not the right time for any visiting (more on that below) and canceled on her niece Leslie as well. Turns out that it was the right choice; there will be no (formal) seder this year for Abba though I’ll make kiddush here in his ICU room and we’ll talk about the Exodus.

I’ll preface by saying that as of this morning Abba is doing remarkably better. It has been a challenging couple of weeks. Last week he had his first serious bout of Graft Versus Host Disease (GVHD). Eama has been referring to it as a California wildfire rapidly spreading like flames to dry brush. He developed a rash (which in and of itself may or may not have been the GVHD, but was at very least a symptom of whatever was the GVHD) and that rapidly progressed. He soon was unable to eat, drink, take meds, and then became so weak he couldn’t walk. There seemed to be some hesitation as he progressed to having him admitted; afterall taking a person who is still in a potentially compromised position into a building full of sick people is not ideal. Eama knew better, however, and abandoned her usual soft-spoken sweetness for a more bulldogesque persona, pushing the folks at the clinic to get him admitted to the hospital.

Last week Friday, a week ago today, he was admitted into the isolation ward (the Bone Marrow Transplant unit or BMT unit) to try to avoid exposure to other sick people as much as possible. This GVHD setback is especially frustrating because his bloodwork continues to shock everyone in how well he is doing there; his white blood cell counts continue to be the best he has had and way better than expected. He also had a marrow biopsy a bit more than a month ago and the results of that were really promising too. It appears the transplant is working though we still have a ways to go before we’ll know for sure.

Unfortunately, however, he continued to decline on the GVHD front. His body was struggling under the weight of the GVHD. The meds he was taking to try to fight the GVHD weren’t powerful enough on their own and his kidneys began to struggle. When his kidneys stopped properly filtering toxins (like they’re designed to do) he began to display greater and greater cognitive difficulty. Speaking was becoming more and more difficult and swallowing came to a complete standstill.

One of his doctors quipped that Abba could skip seder this year because he was having his own ten plagues. As we sat and watched his symptoms grow, the word dayenu was ringing in our ears. In fact it was the story of Nachshon, in the end, that was most apropos. For those non-seder-goers among you let me explain.

Passover, also known as Zman Cheirutein (freedom time—though for most, because legumes are still not consumed on the holiday, it is not to be confused with peanut butter jelly time), is the holiday where we celebrate our passage out of bondage and into freedom. As the story goes, it is a holiday where we remember a time when we were slaves in the land of Egypt. Led by Moses, we pleaded with the Pharaoh (the ancient Egyptian ruler) to release our people.

When Pharaoh refused, God sent plague after plague (ten in all) to move Pharaoh to change his mind and release us. The plagues included invasive pests, sickness, destruction of the food and water supply, paralysis and even death. In fact, the final of those plagues was death of every non-Jewish first-born-male in Egypt (why today bachorim fast on the last day before the holiday). The tenth plague was enough and Pharaoh finally relented.

When we ran from Egypt we ended up at the banks of the Red Sea. Even though God tells Moses that we will safely be able to cross the sea and even though the Egyptians might show up at any moment to stop us, everyone, including Moses, was paralyzed with fear and didn’t dare go forward. The way out of Egypt was to cross the sea and there we sat. That is until one guy, a guy named Nachshon, stepped forward and seeing no other option, forded onward. The story goes that Nachshon walked into the sea all the way up to his waste before the sea miraculously divided and a dry path appeared on which we found our freedom. Nachshon wasn’t willing to wait.

I would be remiss right now if I didn’t tell one of Abba’s jokes. Every year on Pessach he tells the same joke and it seems necessary to keep that tradition alive. Abba would ask, do you know why we serve eggs in salt water at the seder? In Hebrew he would say baytzim b’mayim meluchlach which is a play on words since the word for salt is melech, but the word for dirty as in smutty is meluchlach. He would say it was because Nachshon walked into the salty sea water up to his baytzim, his eggs.

During the seder it is tradition to recount all of the various things that God did for us in connection with the Exodus from Egypt. After each on the list we say, “it would have been enough for us” (dayenu). For example, had God sent the plagues but not split the sea, dayenu. Had God split the sea but not lead us across on dry land, dayenu. On and on like that until we get to the point where we say had God given us the bagel but not made it everything, dayenu. Had God made it everything but not given us cream cheese, dayenu, had God given us cream cheese but not made it scallion, dayenu. Had God made it scallion but not topped it with lox, dayenu. You get the idea.

Where were we? Oh yes: Abba’s plagues and his Nachshon moment. So, Abba was getting worse and worse. His skin was covered in a rash, he had sores, he couldn’t eat, he couldn’t drink, and he couldn’t get up and go; his kidneys were not working and the toxins in his system were causing him to get fuzzier and fuzzier. Various tests revealed that the GVHD was in his gut (which, incidentally, is right where the BMT team expected they’d find it even before he had GVHD—it’s that common for transplant patients), but before they can resume attacking it at full tilt they need him clear-headed and to be able to swallow.

He was transferred from the BMT unit to the Surgical Intensive Care Unit (because they had a room immediately and the Medical Intensive Care Unit did not—not because he had surgery) where he was prepped for a special form of dialysis. The thought was that because he was so weak he wouldn’t tolerate the usual (and more aggressive) cleansing of a two- to four-hour dialyzation; they were going to set him up with a 24-hour “gentle” dialysis instead. The kidneys normally filter toxins from the body and dispose of them through urination. The way dialysis (or more specifically hemodialysis) works is we remove some volume of blood, run it through a special filter, and then put the filtered blood back in the body.

Lying in his bed in the SICU, Abba was mostly non-communicative. At one point he looked up at me and at Eama and said, “I’ve got to get out of here;” he was no longer going to wait for the sea to split. We explained, he was too weak, but that as soon as we could get him stronger we would get him out.

Wednesday night, the nephrology team promised one of the heads of the BMT team that they would return first thing in the morning, get a line placed and by 9 or 10 in the morning they would start dialysis (the BMT doc even confirmed with the nephrology doc that it would be 9 or 10 in the morning not 5 or 6 in the evening). Yesterday morning the nephrologists finally came and put in the line through which Abba would receive dialysis. They also indicated that his strength was better then expected so they no longer needed to do “gentle” dialysis and ordered a three-hour first round (though they later changed their minds and made it a two-hour first round). A while later, x-ray came by to check to make sure the line was in the right place. A half-hour after that the nephrologists returned to read the x-rays and learned the line found its way into the wrong vessel and would need to be redone. They said they had to see a patient on a lower floor but would be right back.

More than four hours later they returned and put in a new line. This time x-ray was there quickly and following another radiological photo shoot the scans were reviewed and the new line was confirmed to be in the right place. It was ready for use and just before 7pm the dialysis nurse arrived with his machine and Abba was under way on his journey across the sea.

Knowing that Abba could not really move during the hours of dialysis, and that he would have Mario, the dialysis nurse, sitting by his side that entire time, Eama and I snuck out for some pre-Pessach pasta. We needed to carbo-load for our own crossing (and sharing a bottle of wine didn’t hurt either).

The clown-show (a description one of the BMT docs used in frustration as he apologized for the millionth time for the slow implementation speed and rapid plan changes of the nephrology team) of Thursday was replaced this morning by a communicative Abba, out of bed, in a chair, and engaged in everything going on around him. He has a long way to go, but it seems this first round of dialysis had a massive impact. He is scheduled for at least one more round sometime today and more over the next days. After the first round they have decided to return to the “gentle” dialysis plan so the next round will be a 24-hour cleanse (which will begin shortly). Nonetheless, good news and signs he is heading in the right direction.

In fact, today the clown was Abba. His nurse this morning indicated he wanted a shave (his beard and mustache had grown in and he didn’t like it—he said he doesn’t like beards and mustaches; given that my beard and mustache were obscured by the mask I was wearing I won’t take it personally). When she got approval to shave his face she confirmed with him again, before beginning, that he wanted his whole beard and mustache removed to which he responded, “the full Monty.”

Nurse Jenn, like many nurses of late, has been fantastic. She noticed that his eye lids were crusted and tender. Without missing a beat, she told him it was time for him to have a spa day. She tore open two packets of sterile gauze pads and with the pads still in the packages, poured a quantity of saline into each package. With the gauze soaked, she removed the pads from their packages and placed one over each eye. She referred to it as the cucumber-eye-treatment. It was among the few rays of sunshine yesterday in an otherwise uncomfortable day. Good news on the intake front as well. Today he is again tolerating swallowing. This morning he was able to take pills, drink water, and eat applesauce. The swallow specialist came to observe his swallowing and she said he is cleared to start ordering trays of food. At first restricted to liquid (like water) and semi-liquid (like apple sauce and other blended foods—see the menu below), but she was confident that he will continue to progress and will be back to solids before we know it.

He will continue to take his meds to combat the GVHD, but longer term we really now just wait for his kidneys to rest and recuperate and for him to slowly regain his strength. Unfortunately he is not in a place where it is possible for him to handle use of his phone or tablet so phone calls and emails are not possible until further notice. Because Eama is by his side, she too is unable to respond to messages or calls. Feel free to send them well wishes either directly to Eama or to me to pass along, but know you will not receive a response. As Abba recovers from this setback I will bring you some updates, but know that it is likely to be a slow process so there may not be much to tell you for a while.

Had Abba had the heart valve surgery but not the lymphoma five years later, dayenu

Had he had the lymphoma but not the need for a BMT a decade later, dayenu

Had he had the need for a BMT but not had a small stroke, dayenu

Had he had a small stroke but not GVHD, dayenu

Had he had GVHD but not kidney issues, dayenu

As we say on this Passover holiday, this too shall pass.

Finishing up this update, I am pleased to report that he is, as I write this, enjoying a strawberry milkshake which was immediately preceded by an orange popsicle which was also thoroughly enjoyed. For those of you celebrating Passover, Chag Kasher v’Sameyach. For those of you who aren’t, enjoy the fact that you won’t be eating cardboard and farting dust.

From Boston, with love and Matzah,

Ariel

Dear family and friends,

Earlier this week I returned from spending seven days perched 14 floors above Fenway. In case you’ve forgotten, here is a picture from casa-Benjamin-East:

That’s right—this update comes to you (mostly) from gate A19 in the Boston airport (and then supplemented in Denver).

The last couple of weeks have been very eventful, both positively and less so. For those playing along at home, February 9^th, three months since transplant, was a milestone date. It was, after all, those first three months during which Abba was likely to be most fragile. Assuming Abba made it through the first three months without signs of rejection, his restrictions would begin to soften. He would be permitted to start eating more diverse foods and foods not prepared exclusively in the apartment (tough living right down the street from one of Boston’s favorite doughnut shops and be unable to partake) and he would be able to have a few more visitors (more on that below).

As the three-month appointment approached excitement built. Abba even fantasized about the docs spontaneously saying he could return to Milwaukee early. Eama, on the other hand, was concerned. Abba was having some balance issues and was getting kind of fuzzy. He even took a small tumble one day getting out of bed. At first it seemed like something that could be explained away by lack of sleep and not eating well (or enough).

Eama asked the doctors to figure this out, and it’s a good thing she did. As you may recall, this is not Abba’s first major medical rodeo. Over the years he has had several big medical events in his life. Arguably the top three were his aneurysm in November of 2002 for which he received an artificial heart valve and a lifetime of taking blood thinners, his lymphoma for which he received R-CHOP chemotherapy which came with a chance he would need a bone marrow transplant a decade later, and now, a decade post-lymphoma, his transplant. The lymphoma seems to have led to the transplant, but it was the aneurysm that gives everyone the most pause.

From the beginning of the current medical adventure, we all knew Abba would be more fragile than other transplant patients going through this (who are very fragile to begin with) because of the titanium valve attached to his ticker and the blood thinners he takes to keep his good stuff flowing through it freely. It may be obvious why, but in case it isn’t here’s a quick and dirty lesson on the lovely world of thinning blood following heart valve replacement.

The amazing machine that is the heart pumps blood in and out of chambers and through valves with extraordinarily precise coordination. Imagine the most impressive Swiss clock, only even more impressive. When we introduce an artificial valve we risk messing with that well designed machine. First, blood may “stick” to the valve and clot. Second blood may not flow through the valve as smoothly as it does through the original (sometimes called turbulence) and that also can cause clotting.

Clotting can be good; we clot so we don’t bleed to death with every cut. Too much clotting, however, is bad because clots can interfere with blood getting to the brain which can cause a stroke (also something you generally want to avoid if you can).

Blood thinners make it so the blood is less likely to stick to the valve and clot up and less likely to have that turbulence cause clotting. It’s no fun being on thinners because you bruise easier and the bruises last longer, you have to be even more careful around medical and dental procedures because of how your body heals afterward, and the thinners change how your body responds to other medication. As a result of all of this, it is important to get the least amount of blood thinner in your system. Under normal circumstances, you work with your doctors and nurses to find that perfect dose given your height, weight, activity level, and diet.

All told, Abba did pretty well getting to that magic blood thinner level over the last 16+ years. The trouble now, however, is he has so many new drugs associated with the transplant recovery that things are much more complicated to get them perfectly aligned. This is the sound of one heart valve clapping. His difficulties with appetite, strength, and energy levels meant there was also weight loss (almost entirely muscle mass) and that made it even more difficult to keep the thinners at the right levels.

Eama’s alarm lead the docs to do extra blood tests to look for something out of the ordinary, to do a CT to confirm no brain hemorrhage or tumor, and then an MRI to look at the brain in greater detail for any signs of damage. They also were concerned that the sleeping meds they had Abba on might be causing the symptoms, so they took that out of the mix.

The CT was clear, the labs were clear, but the MRI showed some spots that could be of concern which lead the docs to want an echo cardiogram and even closer observation. As a result, just a day before his three-month anniversary, Abba was admitted to the hospital. Uncle Sheldon (his brother the neurologist and psychiatrist who conveniently lives just across town from him—if you can’t avoid a stroke, I highly recommend having such a brother just across town) quickly assisted with additional reads of the scans and with performing in-depth, in-person assessment of possible cognitive changes. It pays to know the right people.

On Tuesday, February 12^th, the same day I arrived in Boston, Abba was released from the hospital after a clear echo and days of monitoring. Though it may never be possible to know with 100% certainty, the current theory is he had an acute stroke due to an imbalance of the thinners. Early examination suggests reason to be highly optimistic for recovery from it, but only time will truly tell. The main symptoms seem to be some intermittent short-term memory challenges and some appetite issues. He has also had some stiffness in his neck and shoulders, but we believe that is related to days in bed rather than the stroke itself. All in all, the prognosis is good. Scary, of course, but could have been much, much worse.

Uncle Sheldon was able to bring the MRI scans to one of his colleagues who is an expert in this particular presentation. The colleague not only agreed with the earlier assessment, but went a step further. First, Uncle Sheldon and his colleague were able to rule out the small tumble as the cause. Second, Uncle Sheldon and his colleague have expressed reasons to believe the memory issues he is having now may actually be related to similar issues he had following the valve replacement surgery all those years ago. In other words, the damage now isn’t that bad but instead just stirred up remnants of the old wound. It is not to say this new event isn’t tough—just to say that it isn’t as bad because it may not be all new damage. Finally, given everything, there is really good reason to believe he will recover from this though it may take months (three was the estimated number tossed around).

It is scary that there is no guarantee we’ve seen the end of this issue, however everyone, Uncle Sheldon and his colleague included, are confident that the thinners are now in better alignment and so this shouldn’t happen again. They continue to monitor Abba very closely, but getting the blood where the docs want it is some mix of art, science, and luck. It is also challenging because there are competing interests: increasing his weight and activity level will aid in his continuing recovery from the transplant, but those variables mean thinning meds need repeated adjustment. We’re cautiously optimistic, but remaining vigilant in monitoring.

Part of the new vigilance is even more active in-home monitoring. He still goes to the clinic for labs (which continue to show he is otherwise doing absolutely great—the docs are really happy about that) and doctor visits, but he now has in-home physical therapy which comes with pulse-oxygen monitoring, heart monitoring, repeated (and sometimes annoying, but useful and tolerable) questioning, and monitored stretching and exercise. There was a brief period when Abba had started working with a personal trainer before this latest chapter began; now he gets a sort-of-trainer and insurance foots the bill.

There is a bit of coaching Eama has had to do to convince Abba to overcome the lack of appetite but as of the day before I left Boston, Abba was officially keeping up with a new schedule of eating every two hours during the day.

There have also been funny moments. Like Pavlov’s pooch, every time Eama comes in the room, Abba suddenly has particular shoulder and neck stiffness which can only be eased by Eama’s neck and shoulder rubs. Sometimes this occurs within minutes of the last rub. That may be related to the short-term memory-issue—that he forgot she just rubbed—but it is also possible that Abba has found a new way to get extra affection. I did overhear the following exchange the morning I left Boston,

Abba (from the bedroom):     Cin?
Eama (who was in the computer room, but came running when she heard her name): Yeah Jer.
Abba:  Would you give my shoulder a little attention?
Eama: Not right now.
Abba:  Then you shouldn’t come in here. (Followed by self-amused chuckling.)

As a result of this little detour into the land of ischemia, the three-month marrow aspiration was postponed, but otherwise things in transplantville continue in the right direction. We will soon get results of a post-transplant aspiration and that will let us know with better accuracy just how well Abba is doing. Assuming things continue to improve on the cognitive front and continue to remain great on the transplant front, he may soon be able to have more visitors. For the most part he’s not yet ready for friends to swing by, but he has started receiving a very small number of family and an even smaller number of non-blood-family visitors. I’ll let you know when that restriction is loosened.

Also, because he is able to now eat foods from the outside you may be tempted to send him something. Please don’t without explicit approval from Eama or from me. While he may be permitted, tight control over food for caloric and nutritious reasons is still necessary. That too will hopefully soon change, but we’re not there yet.

Finally, regarding communications—the memory issues are interfering a little bit there. What that means is you should continue to email him directly if you so choose, but also continue to not take it personally if he doesn’t respond quickly or at all. Please do not call him without pre-clearing a time and date with Eama. Some days he is booked up with doctors, labs, and other commitments and other days he has more flexibility, but either way, she remains the gatekeeper there.

While things may seem like they happened quickly at times over the last weeks, the narrative was fluid and so I waited until things took a more solid form before sharing. I will continue with that method going forward; you will get the news, but, to avoid 45^th-presidential-like dissemination of misinformation and to avoid stirring up unnecessary anxiety, only the news fit to be printed.

Rest assured Abba is in good hands, high spirits, and is doing well, all things considered. This is a setback, certainly, but he is determined to overcome it. The doctors (Uncle Sheldon included) are hopeful that the damage isn’t insurmountable, and that Abba has a really good chance of recovery. Only time will tell us for sure, but as you all know this sort of determination is deep in his soul. One might even say that it runs in the family.

In fact, if after hearing this updated tale, despite my continued reassurances that we are hopeful and we are optimistic and therefore you should be too, you are still hanging onto a feeling of fright, consider this: At 92 Savta (his mother Edie) was hospitalized for a sort of stroke in her esophagus. I was in visiting when it happened—when she decided it was time to call an ambulance—and I accompanied her to the hospital and sat with her for the days following. On the third day, after running a number of tests and confirming their grim suspicions, her doctors came in and told us that there is nothing more they can do for her; they would try to make her comfortable, but she should prepare for the end which would come in a couple of weeks.

She told them that she didn’t like that option and wanted to hear alternatives. The doctors repeated that when this happens to the esophagus, which is needed for eating and drinking, the esophagus doesn’t heal—it’s essentially dead. Since a person can’t survive without food and drink, there was nothing they could do and so there was no alternative. She again pushed back and explained that she would get better and wasn’t nearly ready to give up and so she needed to hear a roadmap to accomplish recovery. Her doctors reluctantly agreed they would allow her to try to recover, but they didn’t want to foster false hope, and laid out what they honestly believed was an unachievable set of milestones—something of which they repeatedly reminded her.

Savta began with clear liquids. She beat the odds and was upgraded to all liquids. She again beat the odds and was upgraded to soft foods. When she finally beat all odds and was upgraded to a completely unrestricted diet, her doctors were so shocked and amazed it led to published papers and conference presentations. My cousin Malka and I will be in Ohio next month for Savta’s 94^th birthday and (as she did in advance of our trip in for her 93^rd) she is already starting to plan the flavors of cake she wants and the trip to her favorite restaurant for a celebratory birthday dinner. Savta’s condition was dire and she clawed her way back. Abba’s condition is nowhere near that and he has just as much determination (not to mention fewer years of ware and tear).

The moral of this story is, don’t count a Benjamin out prematurely. Be as confident in recovery as Abba and Savta. There is very good reason to be.

That’s all for now. Thanks everyone for your continued support and well-wishes. They are always appreciated!

Love,
Ariel

Dear Friends and Family,

I know it has been a while since my last update. Sorry about that. Life got really busy, as it seems to do in my profession as the year comes to a close. Things are starting to level off and I am now able to return to writing these updates.

I have good news and bad. First, the bad. Abba has a rash and the doctors believe this is a form of Graft vs. Host disease. Before you panic, on to the good news. Abbas has a rash and the doctors believe this is a form of Graft vs. Host disease. I bet you’re wondering why that is both good and bad news. It’s bad news because Abba has an itchy rash and that is no fun. It’s also bad because he wouldn’t have the rash if his body didn’t feel some threat from the foreign biological material now in his system.

It’s good news, however, for better reasons than it is bad news. It is good news because the rash is relatively mild which means his body is not outright rejecting the transplant and is instead beginning to get used to the new neighbor in the block-body. It is also good news because this means it is that much more unlikely that the cancer will return. I have no good explanation for this second bit—I am just repeating what the doctors have told us.

The doctors, by the way, are really happy with Abba’s progress. By this point most transplant patients who are doing well with the transplant would have had the things Abba has had: the sore throat (which has now mostly passed), the weight loss, the weakness, the rash. All of that is normal. To know if a transplant patient is doing well, by this point the doctors would expect to see a patient’s blood cells to be coded by the donor marrow at a rate of 60% to 70%. Abba, a lifelong overachiever, at last test was at 93%. That’s not all. His white blood cell count is better now than it has been in more than a year. His plan is to even get back on the elliptical soon. (Earlier this week I helped him make sure that all his streaming services were available from the TV in the workout room.) All of that is wonderful news.

I have further confirmation about improvements in food intake. At a recent appointment Abba was asked by his doctor what foods he is eating. He explained that most foods still have no taste which makes them hard to eat, but he was eating cheese. His doctor, who is also Jewish, responded, “Good for you! Most Jews can’t do dairy.” Anecdotally I also know that there is a greater diversity of food being prepared in Casa Benjamin East. Before leaving Boston back in October I set up my Bed Bath and Beyond plus account on Eama’s phone and computer. That way she can log in to my account when she needs to buy Something from BBB and take advantage of free shipping and 20% off everything without paying for a second membership. This also means I get alerts when she buys something. When I got an alert for a mixer I inquired and learned that there may be one of my mother’s famous apple pound cakes in the near future (by request, of course).

If you’re keeping track at home, Abba had his rebirth followed by a week of challenging but rewarding recovery (leading up to the snipless-bris). Though it is probably still a bit early to start planning for his second bar mitzvah, I can confirm that he has hit the toddler stage. He seems to have a little bit of a UTI. What’s fun about this UTI, however, is that it is not the sort that adults get; it is the sort of UTI that only toddlers get. It even has special treatment. I cannot confirm that he was given a lollipop or sticker following his diagnosis but the doctors are happy about this too (strange what doctors enjoy). It’s a bit of a pisser, but good to know that his body is rapidly moving in the right direction. And like all kids at this point in the school year, he has begun thinking about summer vacation. There is a trip up (or down—not sure which yet) the coast. Haven’t done that since w lived in Boston when I was little and we vacationed one summer in Kennebunkport.

In other non-medical news, Chanukah brought two opportunities for Zoomified candle lighting. The first was a Zoom video conference that included Abba, Eama, Nadav, Lindsey, Lindsey’s mom and dad, one of Lindsey’s brothers, Savta and me. It included five time zones and was on two continents. Not bad. A few days later, we had an encore Zoom conference that included Abba, Eama, Nadav (Lindsey couldn’t make this one), Uncle Sheldon, Aunt Miriam, Sheldon and Miriam’s Shabbat dinner guests, Cousin Rafi (his wife Leah couldn’t make this one either), Cousin Malka (who appeared live on location dressed as Queen Elizabeth—see picture below—she’s the one in the middle), Savta, and me. Savta quipped, “we should do this every day!”

Abba has also very slowly and cautiously started receiving limited visitors. Uncle Sheldon and Aunt Miriam were finally able to visit. The visit, intentionally short, involved confirmation of flu shots, wearing gloves and masks and keeping a distance. As he gets stronger he will likely start reaching out to you (especially those of you who are locals) to get together. Stay tuned on that front.

That’s the update from here. Thanks to everyone for the continued correspondence. I’ve been passing them along and they are greatly appreciated. Happy holidays and happy new year!

Ariel

Dear family and friends,

This is just a quick update from the road. I say “from the road” because I was able to travel to Boston for the holiday week/weekend and have been able to visit in person! Though this Thanksgiving did not include any of the traditional food for Abba, there was still much for which to be thankful. First and foremost, Eama. She continues to do yeoman’s work. She is tasked with monitoring meds, monitoring symptoms, monitoring food and water consumption, monitoring sleep, monitoring mood, and monitoring cleanliness. The robot vac (which, for purposes of this email, I’ll call Marvin) comes out, looks around and then throws itself off a cliff because it feels so unneeded in such a spotless environment. Hard to believe there is any time left for anything else.

There have been some ups and down but the downs have all been expected side effects of the treatment. The ups remain centered around good lab numbers. The down included one bad bloody nose that resulted in an unplanned trip to the hospital (though by the time that he was seen by the docs the bloody nose had ended) and he is now dealing with the thick-tongued, sore-throated inevitable thrush that apparently comes with this treatment. It seems that even though Abba can’t taste most things right now, the awful flavor of the anti-thrush gargle comes through. Yay! Eventually we’ll look back and say dayenu, but for now we rest on “this too shall pass.”

Otherwise things are headed in the right direction. The other morning Eama came to pick me up from my uncle and aunt’s house and Abba decided he needed an outing so he came along for the ride. He, of course, couldn’t leave the car and had to be gloved and masked, but a change in scenery from the only other drives he’s had (to and from the clinic) was a pleasure. Abba’s brother, Sheldon, was able to say hello in person—an added treat. Abba is also beginning to plan some of the things he wants to do when he is finally released from his year including a list of concerts he wants to see. (The list, of course, begins with the Doobie Brothers, but also includes a plan to finally get to see Arlo Guthrie.) Abba is also beginning to enjoy feature length movies (whereas he was barely able to stay awake for short TV shows before).

Art has also finally made it up on the wall. There is an original Aunt Clara just inside the entryway and an original Kadishman around the corner. The hall that leads to the workout room and to the guest bedroom and bathrooms has a Haica Shmueli brightening it up. Then there is an original Nadav across from an original signed Robert Frost The Road Less Traveled in the living room. Down the hall to the master bedroom you’d find reproductions of the coronation posters created for Louis the 16^th and Marie Antoinette (because what master bedroom is complete without that) while in the bedroom itself there are a smattering of family photos and an original David Moss (which David created specifically for Abba to help with his healing). An additional Original Nadav and an original Mae Rockland will be added to the mix following framing. Suffice it to say, no short-term rental ever looked so good!

That’s it from here for now. Thanks again for continuing to send messages. I continue to pass them along and though response is still few and far between, receipt has been a joy. Keep them coming and I’ll keep passing them along.

Ariel
(currently in Boston)

Dear friends and family,

Yesterday marked eight days since the transplant. In Judaism the eighth day of something is kind of important. When we dedicate a new space it’s an eight-day process. Chanukah (first of the eight candles this year is lit the night of Sunday, December 2) is the celebration of the reconsecration of the Jewish central temple in Jerusalem following its desecration. The celebration was because, when we regained control of the temple we only found enough oil to burn in our lamp for one day but consecration takes eight days and miraculously the oil lasted. Sukkot, the Jewish harvest festival, is an eight-day celebration of the reaping of the bounty of our fields. Pessach (Passover) is an eight-day celebration of transitioning from slavery to freedom. And then, of course, there is the bris (circumcision) which occurs on a baby boy’s eighth day in the world. Yesterday was Abba’s snipless bris and the חנוכת מערכת החיסון – the Chanukah of his immune system.

The week had some ups and downs. The downs were mainly adjusting to side effects. All the drugs do a number on Abba’s gut. The problem with that is the best thing Abba can do for himself is eat good food, drink lots of liquids and rest. Those things are hard to do when he is having, what the Pepto commercial refers to as tummy troubles. As a result, a lot of energy was spent this week finding the right anti-nausea and Imodium combination. It looks like things are beginning to settle on that front. With the gut more under control Abba will be able to start getting stronger.

The up was pretty cool. Abba went in for his labs and his numbers were so good that they decided he didn’t need a transfusion or white blood cells. As is often the case when you throw a ton of drugs at the body, Abba’s liver was irritated, but the docs and nurses weren’t overly concerned and simply changed the drug lineup.

Speaking of nurses, they have time and time again demonstrated their creative and effective approach to care. The instructions that came with the Hickman included that you can’t get it wet. Showering is important but how do you do that without getting wet. The instructions mentioned a plastic sleeve one can purchase at the drug store. It doesn’t work well at all. What was the nurse’s advice? Glad Press N Seal and waterproof tape. A far more elegant and easy to implement solution.

That’s it from the homefront. Step by step. As they say, you’ve got to walk before you can run (and after all, Abba is only 9 days old). Thank you all for your continued notes. I will continue to pass them along.

Ariel

Dear friends and family,

Elvis has left the building. D+1. I am happy to report that Eama successfully performed her own transplant this evening, transplanting Abba from the tiny house to the spacious sky oasis above Fenway Park. Abba is very happy to be home and is ready to begin his new regimen. He remains quarantined at home, but now has fresh air, wide open spaces, spectacular views, home cooking, a gym, and great tech for watching stuff on the tube and for listening to music. There are even several comfortable places to relax and get some rest (like the recliner shown below already outfitted with bed sheets).

Ariel

Dear friends and family,

I am pleased to report that the transplant is complete (photos below). All it took was hanging a bag filled with pink goo and plugging it into Abba. Roughly 80 minutes of intravenous introduction and he’s done. Now the work begins. Abba’s body must use this donation to start making new antibodies. Like a newborn babe, Abba is both vulnerable and full of potential. Exactly four months apart (July 9) Abba has a second birthday to celebrate. This next year will be filled with healing and growth. Step one, done.

Ariel

Abba Relaxing pre-transplant as the benadryl takes hold. Yep. Sox hat. When in Rome!	Donor’s stem cells delivered	The bag is hung
	Some of Abba’s nurses watch as the stem cells flow forth

Dear friends and family,

For Abba, yesterday was shabbat, his day of rest, and today is his birthday, the zero-day. Abba finished his pre-transplant meds on Wednesday, rested on Thursday, and today he receives his donor-marrow.

To mark this moment, Abba crafted a bracha (blessing) with dear friend Rabbi Marc Berkson. It is tradition in Judaism to say blessings out loud, so others can hear them and participate in them by responding to them with “Amein.” Given that Abba is in quarantine, we cannot be with him in person to hear his bracha and participatorily say Amein. He authorized me to share his bracha with you and I invite you to join me in participating by saying Amein, wherever you are, in response:

G-d of our fathers and mothers,
bless this generous young lady
who has shared her bone marrow with me.
May her recuperation be speedy and complete
and may she be blessed with a long life
filled with love and shalom.

Of course Abba is not the only one praying for the healing of others. Many of you have shared that you are praying for him. Inspired by Abba, I thought it would be fitting to share a rendition of the traditional Jewish prayer for healing. It is below with the Hebrew on the right, the transliteration on the left and the English translation in the middle.

Mi shebeirach	May he who blessed	מי שברך
avoteinu v’imoteinu	our fathers and mothers,	אבותינו ואמותינו
Avraham Yitzchak v’Yaakov,	Abraham, Isaac, and Jacob,	אברהם יצחק ויעקב,
Moshe v’Aharon,	Moses and Aaron,	משה ואהרן,
Dovid v’Shlomo,	David and Shlomo,	דוד ושלמה,
Sarah Rivka Rachel v’Leah,	Sarah, Rebecca, Rachel and Leah,	שרה רבקה רחל ולאה,
hu yivarech v’yirape	bless and heal	הוא יברך וירפא
et hacholeh	the one who is sick,	את החולה,
Yitzchak ben Edis hazikuk	Jerry, the upright, son of Edie,	יצחק בן אדיס, הזקוק,
l’rifuah shleimah,	with a complete healing,	לרפואה שלמה,
bavur she’anachnu	because we	בעבור שאנחנו
mitpallelim l’hachalimo.	are praying for his recovery.	מתפללים להחלמו.
B’sachar zeh	For the merit [of our prayer]	בשכר זה
hakodesh baruch hu	may the Holy One, blessed is He,	הקדוש ברוך הוא
yimaleh rachamim alav	be filled with mercy for him	ימלא רחמים עליו
l’hachalimo u’lirifuato	and restore him and cure him	להחלימו ולרפאותו
u’lihachziko	and strengthen him	ולהחזיקו
u’lihachayoto	and invigorate him	ולהחיותו
vayishlach lo miheirah	and quickly send to him	וישלח לו מהרה
refuah shlemah	complete healing	רפואה שלמה
min hashamayim,	from the heavens,	מן השמים,
b’toch she’ar cholei Yisrael,	among the other sick of Israel,	בתוך שאר חולי ישראל,
rifuat hanaefesh	soul-healing	רפואת הנפש
v’rifuat haguf,	and body-healing,	ורפואת הגוף,
hashata b’agala	may it come speedily	השתא בעגלא
u’vizman kariv.	and soon.	ובזמן קריב.
V’ne’emar Amein.	And we say, Amein.	ונאמר אמן.

The unknown remains among the highest on the list of terrifying things. Part of that fear comes from a lack of control. I am confident that Abba has done everything within his power to survive this threat, but at this moment what comes next is out of our hands. As Eama often reminds me, one foot in front of the other.

For that reason, I include Dr. Antin and all of the medical professionals on his team in my prayers. Paraphrasing Numbers 6:24-26:

I pray that G-d blesses and keeps them.
I pray that G-d makes his face shine on them and that he is gracious to them.
Finally, I pray that G-d lifts up his face to them and gives them peace.

As it is written in Proverbs 2:11:

Discretion will watch over them; discernment will guard them.

Because, as it is written in Proverbs 4:6:

Don’t forsake wisdom, as she will preserve you; love her, and she will keep you.

In these moments when we are facing that dubious unknowable future, it may help to look at others who have walked that path and found light on the other side. One of those who came through overwhelming fear was King David, author of the Psalms. King David, a shepherd himself, wrote in Psalm 23:1-6:

The Lord is my shepherd, I shall not want.	… ה’ רעי, לא אחסר.
He causes me to lie down in green pastures; he leads me besides the still waters.	בנאות דשא, ירבציני; על־מי מנחות ינהלני.
He restores my soul; he guides me on the righteous path, for his namesake.	נפשי ישובב; ינחני במעגלי־צדק, למען שמו.
And though I walk through the valley of the shadow of death, I will fear no evil because you are with me; your rod and your staff, they comfort me.	גם כי־אלך בגיא צלמות, לא־אירא רע־־ כי אתה עמדי; שבטך ומשענתך, המה ינחמני.
You set a table before me in the presence of my enemies; you have anointed my head with oil, my cup overflows.	תערך לפני, שלחן־־ נגד צררי; דשנת בשמן ראשי, כוסי רויה.
Certainly goodness and kindness will pursue me all the days of my life; and I will sit in the house of the Lord for the rest of my days.	אך, טוב וחסד ירדפוני־־ כל ימי חיי; ושבתי בבית־ה’, לארך ימים.

Singing also helps calm me and so I thought I would share a song from verse 4 above. You can listen to it here: https://abbaupdates.newphaseinnovations.com/wp-content/uploads/2018/11/Gam_Ki_Eilech.mp3. Speaking of singing, the late Debbie Friedman took the prayer for healing and created a beautiful song from it. You can watch Debbie performing her song here: https://www.youtube.com/watch?v=pHKo3CjuzpY

Her song is as follows:

Mi Shebeirach by Debbie Friedman, Z”L

Mi shebeirach avoteinu
M’kor hab’racha l’imoteinu
May the source of strength,
Who blessed the ones before us,
Help us find the courage to make our lives a blessing,
and let us say, Amen.

Mi shebeirach imoteinu
M’kor habrachah l’avoteinu
Bless those in need of healing with r’fuah sh’leimah,
The renewal of body, the renewal of spirit,
And let us say, Amen

Thank you for keeping Abba in your hearts and in your prayers. The doctors remain hopeful that he will be discharged 24-48 hours after the transplant. He can’t wait to get out of there. Been cooped up in his tiny house for too long.  I’ll let you know when there is more to know.

Ariel

PS
Eama provided some pictures of the tiny house:

Dear friends and family,

The word of the hour is sapped. Today marked the end of day -4 (minus four). On day -5  (yesterday) the drugs were ramped up a bit adding two additional drugs to the study drug pill Abba is already taking once per day. The first of these two new drugs helps prevent graft rejection while the second clears room in his marrow for the donation. One of the two new drugs is a 30 minute, once per day, IV delivery and the other is a three hour, twice per day, IV delivery. The added drugs are causing Abba to feel fuzzy and low energy—which is precisely what was expected. He is also feeling bloated and uncomfortable, but that too is expected given that they have been pumping him full of fluids. Should he turn blue he will be rolled down to the juicing room (“Violet! You’re turning violet, Violet!” That is a Violet Beuregarde reference from the original Willy Wonka movie staring Gene Wilder, of blessed memory.) Day -3 will be the last day with all three drugs, then -2 he just has the two IV drugs, -1 no drugs, just rest, and finally, on the zero day, Friday, he will get his donation.

Abba has also been having some leg pain. This isn’t new—it started some time ago and well before arriving in Boston—but having no place to go to walk it off has exacerbated the issue. The pod and the rooms in the pod are quite small. How hip to be taking a vacation in a tiny home. They replaced his bed with one of those magical beds with the automatic inflating and deflating portions designed to prevent bed sores. He reportedly got more than five straight hours of sleep last night which is more than he has been getting for some time. That and the oxy seem to be helping though the magic bed doesn’t cause constipation.

Abba has also discovered that the food in the hospital is, for lack of a better term, hospital food. The eternal problem solver and out-of-box-thinker, he has learned how to work that system. He has discovered that cooked food sucks so he sticks to sandwiches like peanut butter and jelly, tuna salad and egg salad. He also learned that the rice crispy treats and the apple pie aren’t bad. (In case you’re wondering, weight loss is a threat when one goes through this and so there is a constant effort to pack on the calories to counteract that issue. Not the easiest thing to do, however, since the drugs leave him nearly tasteless. One interesting side note is that they said he cannot have pepper. We have yet to learn why that might be. The closest I’ve found is that the drugs are known to cause irritation in the throat and so avoiding anything that could also irritate is wise.

All that said, Abba is doing fairly well. He has found ways to cope with the cramped quarters such as studying his neighbors and speculating about why one neighbor always has his drapes open (despite bright light) and always has his door open; Abba believes that neighbor must be claustrophobic.

Eama has been looping back and forth to the hospital to hang out in the tiny room. Part of the looping is necessity regarding things like eating—when she is in the room she is masked and gloved so eating isn’t possible. She has also continued getting the apartment ready for Abba’s homecoming (likely to occur either Saturday or Sunday). The latest addition is the elliptical which took a team of four movers to get it placed. It’s really big. Eama refers to it as the tank.

 

 

 

 

 

 

 

Eama seems to be keeping it together though her energy is a bit sapped too given how little she has been sleeping with all that is going on. She did have a bit of a freight today when one of Abba’s neighbors in the pod was given an experimental drug for some study he is in and the drug immediately put that neighbor into anaphylactic shock. The nurses in the pod reported that this is the first time they’ve ever had that occur. They were shaken by it which was not easy to watch; difficult in that moment to avoid imagining doomsday scenarios. Eama happened to be sitting in the waiting room when the code came through and the flood of respondents poured into the area. She immediately texted Abba to confirm he was not in distress, not the source of the code. Abba, a bit fuzzy, missed the alert so he didn’t respond which raised Eama’s blood pressure momentarily. Eama quickly got gloved and masked and got back to Abba only to learn he was unimpacted by all that had occurred with his neighbor (who survived, though is now in intensive care).

In other news, my parents have decided to revise the contact policy. They are ok with you emailing them directly. Just know that it may take a longer than normal amount of time for you to get a response and there is a good possibility you won’t get a response at all. Additionally, if you’d like to talk on the phone, you could email them with your availability and if they are feeling up to it they will call you. That said, if there is a message that requires more urgent attention, please send that to me and I will address it with them. All the other restrictions remain in place.

That’ll do it for this slightly shorter update. More to come later in the week. Thank you all for the continued support both for Eama and Abba and for me and Nadav. It truly helps!

Ariel

PS

If you haven’t already, don’t forget that tomorrow is election day. Vote!