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