11/10/19 – 1 1/2 years post transplant

On November 2, Reese hit a great milestone. 1 1/2 years. Now we are just SIX MONTHS away from the glorious 2-year-mark. Every month further that Reese gets from transplant, the less chance that she will relapse. We have been told that a child who receives cells from an unrelated donor (not a sister, for example) does NOT usually relapse after 2 years. (A related donor transplant does not follow this same rule of thumb, but that is another story.) However, our doctors are so confident that Reese has seen the last of JMML that they discontinued her bone marrow aspirations, permanently, at the end of the summer. As you can imagine, there is no greater blessing than this, the end of leukemia’s hold on my sweet girl and my family. There are a few reasons our doctors feel so confident. One, Reese’s GVHD, while detrimental in so many ways, brought with it the graft vs leukemia effect that wiped out these cells so ferociously. Second, we know that Reese was a RESPONDER to the pre-transplant chemotherapy (fluderabine/cytarabine and azacitidine). Thanks to our UCSF doctors and their aggressive research, this is now a standard protocol for all JMML patients diagnosed all over the world. When Reese was diagnosed, this was NOT the case. According to this research, 100% of children who responded like Reese remained in remission at the 5-year check. This study can be found HERE. The third study, not out yet, involves Reese’s conditioning regiment (the harsh chemotherapy at transplant) and grade 4 GVHD. All are favorable for Reese to have a bright and healthy future!! I know this, and it keep me calm and focused. But every month that flies by with joy in my house is one to be celebrated and recognized!

So how is Reese feeling today? Like a 5-year-old. There could be nothing better! Reese goes to kindergarten (we even added 2 full days to her week, successfully!) She also participates in ballet, gymnastics, and ice skating with her sisters. Life is full and life is good. On Monday, Reese goes to Lurie for her monthly infusions. Except, she doesn’t get any infusions. At least she didn’t last month. As of Monday she is officially “off” her LAST immunosuppressant, Vedolizumab. (The hail Mary miracle drug that was added in the thick of gut GVHD last year.) The doctors also held her IVIG, I will learn more about this on Monday. Once Reese is off IVIG, the doctors are going to schedule newborn immunizations. Right now, Reese doesn’t even have the protection of a newborn, she is very vulnerable. It will be INCREDIBLE to start these vaccines. I think it takes a year to catch her up once we start. It is hard to explain the immature immune system that Reese has right now. I read an article that explained this a little, via a discussion about how measles wipe the immune system’s memory of other illnesses. I will link to it HERE. When reading, it is interesting to keep in mind that Reese doesn’t even have THE BOOK they refer to. It’s terrifying, but we do everything we can and I think good news is on the horizon on Monday!

As you know, Reese was hired as a DESIGNER by Resilience Gives this past summer. She designed slipper socks with flamingos (of course) and her video went live earlier this week. She thinks she’s famous, it’s really sweet. The end is my favorite part, and she MEANS IT! Please link to Reese’s video HERE to learn more about this incredible company and their mission. I already bought a dozen pairs as stocking stuffers, because they are tried and true (my girls are my focus group.) If you happen to purchase, please post a pic on Rock Reese’s Socks (Facebook) so she can see!

More on our long-term plan after I meet with the team on Monday. I am very curious to hear how they feel about her port. Reese has had either a double lumen broviac or a port since February of 2018. At some point, she won’t need this kind of access anymore. I’ll keep you updated!

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