It's May. How did it become May?! Somehow two months have passed since my last update, which seems crazy. Time has a funny way of passing both slowly and quickly these days...

This whole journey has been a marathon, but lately it feels like we're rounding the corner on mile 20 with a gentle downhill slope to the finish. Dare we hope that things go relatively smoothly for the next 5 months? 🫣 

Treatment-wise, we've had a few updates:

- First, we're losing Ben's phenomenal primary attending oncologist, Dr. Lewis Silverman. We're super bummed - he is such a well known and respected clinician and researcher, and has been our guiding light this whole way. He's headed off to Columbia in NY after a lifetime at Dana Farber. We are, however, SO grateful he got us through all the tricky parts of treatment. At this point  (and as long as things stay the course) there aren't many tough clinical decisions to weigh, so it's as good a time as any if we need to change physicians. We'll be keeping our Fellow (Dr. Weiss, who Ben has cheekily nicknamed "Dr. White Rice" 😆), and the rest of his Jimmy Fund team, so we feel good about the continuity of care. 

- Ben is in week 2 of Continuation Cycle #13, which started with a LP. This LP was his 22nd (oy!), but if my count is correct, he may only have 2 more LPs before the end of treatment! (I'm a bit in disbelief just typing "end of treatment" - it feels almost in touching distance?!)

- We've had a few minor complications lately, but all manageable. Ben's port has started to act up a little and the nurses sometimes have trouble getting blood return for labs. The team says this can happen, as the line has been in his body for over a year and a half now. Sometimes these issues are due to clots forming inside the line, other times it could be that the line has shifted with normal body growth and now presses against different areas of anatomy, sometimes occluding the end. He's had to have a drug called tPA twice in the last few weeks just to break up any potential clots that may be in the line. That has seemed to do the trick, although it adds 1-2hrs onto our each of our clinic visits. Fingers crossed it continues to work and he doesn't need anything more invasive. 

-Ben has occasionally experienced a bit of a pinching feeling in his chest, primarily during or after exercise. We investigated it with an ECG and a cardiac echo, both of which appeared normal (thankfully), but we'll continue to watch and see what happens with this. One of the chemo drugs he received earlier in treatment (doxorubicin) has been linked to post-treatment cardiac disfunction, and although he did receive a drug called dexrazoxane that is meant to reduce the effects of the dox on the heart, it's still something we'll have to monitor.

-Ben has had 2 IVIG transfusions and is likely on the cusp of a third as his IgG levels continue to tick slowly down with each cycle. We’ll get another reading in the next few weeks and see if another is in order. Hopefully we catch it before the telltale sign of recurrent low-grade fevers send us back for some ED trips. 

-Lastly on the health front, Ben managed to come down with Covid a few weeks ago. We were thankfully able to do his requisite fever-protocol of 2 days worth of blood cultures and antibiotics at the Jimmy Fund instead of at the Children’s ED since Ben conveniently spiked his fever during business hours. 😅 When he was assigned his isolation room in the clinic (Room T), he said, “aww man, I like Room V because it has a private bathroom”. Annnd that’s when you know you’re a regular at clinic. 🤣 At any rate, after 1.5 days of a low grade fever and 2 days of minor congestion, Ben was none the worse for wear. We also managed to somehow keep the rest of the family healthy. 🎉

On the non-treatment side of things, we’re gearing up for the end of school and the start of summer and camp season. The kids are loving the warm weather and we’re hoping it carries us through the holiday weekend and we can enjoy some time outside on the Cape! 🤞