Avi's Lymphoma

Yuval and Vivian left, Oded arrived! So the sleeper sofa continues to be very useful and even reasonably comfortable and we are very happy with all the company. We went for a long and cold walk in Central Park and then last night we had our modified Thanksgiving dinner . Today we 3 went together to the hospital for the bi-weekly appointment (by bi-weekly I mean the second definition in  https://www.merriam-webster.com/dictionary/biweekly  — twice a week). The big news today is that the Hickman port was yanked out! Avi says this was done in the most casual fashion — literally was yanked out by a physician's assistant. From tomorrow on Avi is free to splash around in the shower to his heart's content – the small pleasures in life! More importantly his numbers continue improving. Today he got another dose of Rituxan – he is due to get 3 more, once a week until December 20. Some people react very badly to it, but luckily we already know that Avi tolerates it very well. T...

It is 3 weeks after transplant! Today, after three days of vacation, I am back at the hospital for tests and some treatments. All in all, the blood numbers continue to be great, and my doctor is very happy. In a week they will perform the first bone marrow biopsy after transplant (and other more detailed blood tests), and will be able to tell exactly how much of each line are the donor cells (for Greek mythology lovers, this is called a   chimerism   test). I am also back to the normal clinic, and will need to come to the hospital only twice a week, on Tuesdays and Fridays; this is both another indirect good sign, and a blessing in itself. Finally, they will soon remove my Hickman port (that 3-lumen port used to allow lots of infusions to be given in parallel). I will be left with only my medi-port that I had now for almost 2 years. The advantage is that I’ll be able to finally return to taking normal showers again (the medi-port is under the skin, so can be exposed to ...

With all the good news about Avi's recovery they decided he does not need any longer the special tender care of the Red Team. So today was his last visit there – his numbers are good and rising, the levels of the anti-rejection drugs were tweaked some more, and he was declared to be recovered enough to start going to the regular clinic starting on Tuesday. So, barring any unforeseen changes, he will have to come in twice a week – alternating between seeing the transplant doctor and the nurse practitioner. Every such visit will focus on blood tests and the occasional treatment (infusions and other medications) as needed, but now the infusions will be in a general infusion center and not in one dedicated to transplant patients. This is an exciting graduation and we are very thankful to the lovely dedicated team (we will surely still bump into them occasionally – all the treatment suites are on the same floor and the nurses do occasionally shift from one treatment suite to the other)....

What is the next number in this sequence: 0.2, 0.3, 0.4, 0.7, 1.3, 3.8, 11.8? It may be hard to guess from what looks like exponential growth, but the next one is 11.2, and this is good! The sequences is my White Blood Cell (WBC) counts in days +7 to +13, signifying that the donor stem cells engrafted in my marrow and started generating white cells. In that second week after transplant the graft is “encouraged” to focus on generating white cells by a daily injection of Neupogen, an artificial protein designed for that purpose. My marrow reacted very fast, and they stopped the Neupogen after 5 shots, as my WBC overshot the normal range [4-11]. This allowed the new stem cells to switch focus and allow other type of blood cells be generated, and indeed my platelets counts shot up as well, from 27 to 68 in the past 3 days (here the normal range is [160-400], so I have some ways to go). The same is expected to happen soon with my Red Blood Cell counts – here it will be interesting to se...

Everybody arrived safely and we are having a great time together. Avi and Yuval met Nuri for the first time to their mutual delight. The pics attest to everybody's happiness at being together. There is also very good news on the medical front – Avi's white blood cell counts are improving dramatically and the doctor is very satisfied with the progress, and thinks Avi may graduate soon to coming in only every other day!

Notice the title – we are into "Days" with double digits! So Avi's white blood cell count is creeping up – very very slowly but even so this is very good news and we and the medical team are very excited. He did need an infusion of platelets today but that is expected. His immunosuppressant levels are still being adjusted every few days based on their levels in the blood – it is all a very fine juggling and tweaking art. The other wonderful news is that Einat and Nuri (who will be one month old tomorrow) will be landing in Newark in a few minutes! Eyal went to fetch them and they will all go together to a hotel nearby. We may or may not see them tonight, depending on how tired everyone is, but in any case we'll have the next 4 days to enjoy each other's company, including Yuval's company – he will fly here tonight and will arrive tomorrow morning. So it's all very exciting.

It's a week since the transplant! We are falling into a routine. The hospital calls every night and tells us when to come in the next day. Once we get to the hospital it's blood tests, an infusion of an anti-fungal agent, maybe some hydration and other things as needed. The nurses run the show, the nurse practitioners who supervise them make some more decisions and the attending physician pops in for a chat and may make some adjustments too. The main adjustments seem to be in the levels of the anti-rejection drugs – their levels are measured daily and have already been adjusted a couple of times. Today is super cold, and tomorrow will be worse so Avi did not walk more than to the hospital and back. But the previous two days were very active. On Sunday Eyal and Avi took an Uber to the northern part of Central Park and walked in the woods there. Yesterday Avi and I walked along the East River.