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May 19-25

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We can hardly believe the anniversary of Eden's diagnosis is just around the corner. Ash Wednesday will forever be my solemn reminder of this journey - it was Ash Wednesday 2019 (March 6th) that Eden was admitted to YNHH and didn't leave until about a month later.

As I said a couple posts back, we have been getting back to a more normal rhythm. That is because Eden has moved into "Maintenance Phase." Essentially, this means a lot fewer visits to the clinic and a lot more chemotherapy "at home." Still, this means Eden is spending much more time at school & will be able to finish 5th grade strong! She is even participating in the school musical "The Wizard of Oz." 

Lucas is back into fencing & Gavin is at parkour 3 times per week. We continue to get amazing support from friends, family, organizations & our community. In the fall, when school started back up, Elia reached out to a group of Westport parents for some help with transportation after school & has been participating in the Westport Gift Economy ever since. We have had so much help, people generously donating their time to help organize the various spaces in our life, physical & virtual. The list is too long to mention here, but you all know who you are. We cannot thank you enough.

Eden has really taken to cooking & we are having a ball with that! She has an after-school cooking class and has brought recipes home that she wants to try. I usually get to be her sous chef, but she has also gotten help from her mom, tutor, friends & neighbors. Below are some pics of Eden in cooking mode and some of her creations.

We have finally seen a glimmer of light at the end of this 3.5 year tunnel. Eden's oncology team explained the next 30 months of "Maintenance" treatment to us. Essentially, it is about 10 rounds of a 3-month roadmap. Provided there are no serious complications in Eden's health, this gives us greater predictability than we have had since we started treatment last March. Most of the treatment will be at home (see the pill-box) with a steady regimen of pills to administer. Still we are so grateful for this phase!

As you probably have noticed, I have had longer and longer gaps in posting to this site. It has been 5 months since our last major update. We want to keep providing useful information about Eden's recovery, but squeaky wheel and all that. Please feel free to squeak if you haven't heard from me in a few months! That said, no news is good news right!

Peace & Blessings,
Elia & Ryan

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