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