When you first start reading about cancer of any type, the first theme that jumps out is how the cancer invades all parts of your life. One of the more obvious parts for us that's coming up soon is school -- Sam's junior year at Paly starts a week from yesterday. It hasn't been totally obvious how to navigate that, but the hospital and the school have so far both been helpful -- we had a meeting today with both. 

(The TL;DR is that I think we have a good prototype plan in place now that's a mix of what's called "home & hospital" classes, some outside tutoring/AP prep, and some 1-1 private school classes -- but there will likely be some twists and turns from here.)

As we were preparing for today's meeting, we realized a few things: (1) over the past 5 weeks, just an impossible number of things have changed for us as a family and Sam as a student and human, and we needed to introduce/reintroduce him to the school a little bit, (2) while we've come up to speed on the ins & outs of leukemia and childhood cancer over the past month, the school doesn't have much background or understanding about it at all, so we'd need to educate, and (3) because of the very special circumstances of Sam's life and abilities and living in an area that values inclusion and achievement as it does, there's an opportunity to really think through what our goals are here and to demonstrate leadership in finding a path that's great for everyone.

Anyway, with that in mind, we put together a note to send to everyone before the meeting -- re-reading it tonight, it feels like it has some good insight into Sam's mindset, and how he's approaching the disease and his treatment, and really some of the ways that he's just such a special human. So sharing it here. (Happy to get into details  with anyone who's interested -- it's a prototype! and can always use iterations -- but including the detail here just because it's what we have, not because any of the particulars are that important.)

J

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Sam Lilly

Current Status

• Between breaking his wrist to end the school year, dealing with a completely unexpected leukemia diagnosis in June, and undergoing 5 weeks of chemotherapy and intermittent hospitalization, Sam’s had a very tough few months, full of physical changes and challenges, emotional letting go of many things that he loved, including soccer, going out with his friends, etc.
• Despite all of that, he’s excited about his future, is determined and disciplined in taking responsibility for his treatment and health, and is particularly excited about starting his junior year at Paly, even though he knows that it won’t be quite what he expected it would be. 
• As you might imagine, during this past month+ of his life he’s considered & reconsidered many things about himself, life and school – and our observation is that he’s more motivated to engage and work hard and do well than he’s ever been.
• There are certain realities, however: he’s been diagnosed with B-Cell ALL leukemia. The good news is that this is a disease that’s had decades of amazing people working towards cures, and as a result there are well understood and effective treatment paths.
• The tougher news is that treatment is expected to last 2.5 - 3 years, and will include at various times hospitalizations, procedures, frequent check-ins with his care team, and chemotherapy and other medications that can have side effects that may affect energy, motivation, and ability to focus, among other things.
• Right now, Sam is immunosuppressed as a result of his initial chemotherapy, and so we’re being very careful to limit his exposure to others, especially considering the Covid-19 pandemic.
• While the standard course of care is well understood, the day-to-day for Sam may be unpredictable from time to time, and his ability to achieve may go up or down as a result.

Goals

• Sam wants to start his junior year on time with the classmates he cares about, in some fashion.
• He anticipates over the next 2 academic years (including summer sessions) being able to complete Paly’s requirements for graduation, and to apply for and attend college on schedule (more or less).
• Sam wants to & plans to graduate with his classmates in 2024.
• He’d like to be able to take some AP classes and sit for the tests – he’s very accomplished in Chinese, for example, studying both at Paly and with outside instructors.
• Sam wants to be challenged, wants to drive to be successful, and wants to be a part of Paly to whatever extent is possible. He’s lived here practically his whole life, starting kindergarten at Ohlone, then to Greene, and more recently to Paly. Even though he’s been at Paly during an extremely difficult time of the global pandemic, it’s been extremely important to him and is part of his identity – and even though he’s had to unexpectedly give up some of the things he’s cared a lot about, like playing for the Paly Soccer Team, he’s committed and connected and ready to do whatever he’s able.

Questions

• • What are the models for this? 
  • • We have heard “home and hospital” but would like to understand what that means
    • What about independent study plans/IEP accommodations, etc?
  • As a family, we have resources – time, money, access to instructors – that may not be typical – are there ways that we can use these to create the best possible situation for Sam?
  • How can we use a mix of approaches for various classes? Examples:
  • • Chinese AP – we have an external instructor who he’s worked with for years who routinely prepares students for the AP test – is there a model where we can continue/extend this that can both get school credit and also have him sit for the AP test?
    • Honors Physics – we were considering doing this via an outside school like Fusion or Lydian
    • • Is this possible?
      • Are there preferred institutions to partner with?

• AP Bio– we’re anticipating maybe pushing this into Senior year

• AP Lang – he’d like to take the Paly/PAUSD version of this

• Intro to Analysis and Calc – we’re willing to do this via an outside school too, but need to understand the path as we know this a course that is specific to PAUSD. Can an external institution offer a similar course and Sam still get credit through Paly?

• US History – we don’t have any particular point of view on this

What things do we need to decide now to get started, versus what things are we able to work with you over time on?