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Science is the BEST!

Updated: Mar 15, 2020

Today was Thea’s second-to-last chemo dose in the Interim Maintenance 2 stage. She’s in the homestretch to Long Term Maintenance (LTM). This is the two years of less-frequent visits I wrote about in the last post. It means daily oral chemo, monthly IV chemo and steroids (this is the hard part), and lumbar punctures every three months.


Today, our main Nurse Practitioner, Erica, shared that Thea’s treatment protocol will be changing, effective immediately. This is the result of a study that just achieved statistical significance. The children that participated in this study’s experimental arm had the exact same outcomes as the control group that were given the best-known “standard of care” treatment. This means all children on Thea’s protocol across North America will be making this switch. So, what’s the difference?

Drumroll please… … … … … her next two years will still involve daily oral chemo, but she will only go in for IV chemo once every *3* months and will have her steroid burst at that frequency too! Let that sink in for a second - it’s quite something. The evil Vincristine chemo that’s been making her feet weak? Only once every *3* months! The even-more-evil steroids that morph her into the “decamonster?” Every *3* months.

A small thank you to a handful of the amazing nursing staff at UCSF

This means so many great things for Thea. She might not need her foot braces. She’s likely to have better attendance at school and a generally lower risk of infection. The teachers will need to fit her with a feed bag to attend school while on steroids less often. And yes, I have to keep putting stars around the number *3*. It’s been my favorite number since I was 5 and this just confirms there’s a cosmic connection. Jeff and I are so elated. We just can’t possibly express our gratitude to the families that participate in these studies, to the researchers that write them, to the fundraisers that make them possible. It’s all so incredibly important.

Dr. Griffin trains Siggy to take over.

Related to this news, our hospital is urging all patients like Thea to have their mediport removed at the start of LTM. Although the port is an amazing invention that has made IV meds so easy, it is also still the number one risk for an infection that could be life threatening. Now, with this new schedule, it means that nurses can put Thea’s future IVs in while she is under sedation for her lumbar punctures, making it easier. While we’ll still get poked for blood draws, theoretically, the only time Thea will have to be awake for an IV poke is when we end up in the emergency room. It does mean surgery in the next month or so, and Thea is not having that, but not because the surgery to have it placed sucked. In her sweet, strong, five-year-old mind, she can scarcely remember a time when she didn’t have her port and she has become quite proud of it. She loves pretending it makes her into a robot (thanks, dad) and she feels it’s part of who she is. We totally get this and are going to have gentle conversations with her to get her there. We know she will. She’s pretty awesome like that.

So what did Thea have to say about this new plan? She made a frowny-face and said, “but I like getting presents at the hospital.” Cue enormous parental eye roll. In all seriousness though, that reaction is entirely due to all of you, who lovingly sent her and Siggy so many special things over the last 7+ months and continue to do so. Our collaborative scheming to hoard these and reveal them at difficult times has actually worked too well. For example, last week we went to the ER because Thea’s fever hit the mandatory threshold. Long story short, the methotrexate chemo can actually cause fever and we know this, but we still have to take her in, just in case). After they did labs and confirmed her counts were high, they said we could go home. Jeff and I were “yayyyy” and Thea and Siggy cried. They were so excited for their “bye-bye-bag” presents, reserved for overnight stays, that when we were released same-day, they disintegrated. Sigh. We are maybe too good at our jobs.

In our last post we also mentioned that we were planning to have a park party to kick-off LTM in mid-June. After much consideration, we decided to postpone that shindig until her one-year remission anniversary, which will be around her 6th birthday, (October 5th, 2019). Stay tuned for date/details on that. By then we’ll be ready for crowds and we hope to produce one! This poor girl had her 2nd and 5th birthday parties canceled for illnesses, so we’ll try to make this one a bash.

More good news - Thea’s physical therapist did some assessments to benchmark her against her peers and she is making great progress. We will continue with daily exercises at home but no longer need to go to the clinic unless the neuropathy gets worse. It’s great to have one less thing, although we still are challenged in getting her to do her exercises regularly (accoutrement to motivate her added to her list). We are also taking a summer pause on child trauma therapy. Our therapist feels both girls are doing very, very well and are not “stuck” in their processing of all that’s happened and changed in our family. It’s felt that way to me, but it was heart-swelling to hear it from a professional. We’ll start back up again as-needed during the transition to Kindergarten.

We are really looking forward to some MUCH-DESERVED summer fun. We are doing a bunch of camping (not too far, doctor-approved), having a visit from Grandma & Grandpa where we’ll go cheer on the Team In Training cyclists, and we’ll be taking both girls on separate trips to see family. In addition, Thea will do a one-week camp, both girls will take ballet together, and in August we’ll be doing a family camp for children with cancer. In there somewhere, we may also be moving within SF. (!) It’s gonna be a hot minute right before it’s time to start Kindergarten. It’s funny how the idea of all these summer activities is so special, so celebrated, so not-taken-for-granted. I actually printed out a big paper calendar and filled it in so I can repeatedly look at all the non-cancer-related things we have planned. It makes me teary. We are almost there, friends. I don’t dare imagine it will all go off without a hitch (in fact, neutropenia and a chemo hold is probably imminent), or that it will be the same as life before leukemia, but I’ll be damned if I’m not going to enjoy the anticipation anyway.

Always a pose at-the-ready.


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