They give my passion a purpose - something only so few in their lifetimes are lucky to experience. I get so much satisfaction from working for such kind people, for such a wonderful milestone in their lives. And now there are people out there who actually say "hey, can you make me a pretty thing?". I'm just a person who wanted to make pretty things. Those fleeting moments give way to overwhelming gratitude and joy. I'll be totally honest with you: there are still times I don't want to get out of bed (yes - even though my job is essentially a personally customized amalgamation of things I love)!īut - the point is, those are just moments. The whole not-hourly/not-salaried wage thing. That whole "building-from-scratch" thing. The not-so-sexy side of this life does take a toll on you: The solitude. While working for myself, and building this all from scratch, is a life that I very actively CHOSE, there have been many moments where I wondered what kind of idiot would choose this life (spoilers: Me. I'm so grateful to all of my very early clients in 2016, who trusted me - a newbie to the scene - with their wedding invitations and were so generous with their praise, appreciation, and continuing support. Well, I'll just go with the first word that comes to my mind: gratitude. Funnily enough, I'm so used to keeping my thoughts quick and concise that I have no idea what long-form thoughts I even have anymore. While blogging has rightfully taken the backseat to the ever-convenient IG/FB/Snap, I occasionally miss the days of sitting down and sharing thoughts for the sake of sharing thoughts. Best case scenario, Eliza will be a candidate for a new trial at Cincinnati Children’s Hospital.In the age of mobile and microblogging, sitting down to write a good old fashioned blog post on an actual computer feels so retro. We have a consultation at Cincinnati Children’s Hospital on November 10th to discuss treatment options, since she has failed all known protocols for rhabdoid tumor. Eliza’s oncologists are not giving up, and neither are we. Our family will be taking off work to be with Eliza full time. Eliza was granted “Compassionate Approval” for this medication.Įliza’s most recent CT scans from November 5th revealed 4 new metastatic disease nodules in her lungs. Eliza is also on an oral medication called Tazemetostat, a gene-targeted therapy, in hopes of preventing the rapid growth of more rhabdoid tumors. This unique SMARCB1 gene mutation runs in the familyĮliza’s treatment regimen thus far has included 6 total rounds of intense chemotherapy, bone marrow transplant, 11 sessions of radiation, and 5 surgeries.Ĭurrently, Eliza undergoes CT scans of chest/lungs every 4 to 6 weeks and MRIs of brain and spine every 6 to 8 weeks. Kate, Eliza’s mommy, has the same SMARCB1 gene mutation, although she never developed rhabdoid tumors Eliza is the only documented case in the world of having inherited this mutation Rhabdoid Tumor Predisposition Syndrome (RTPS) – SMARCB1 genetic mutation One surgery to remove the left lower lung Two surgeries to remove tumors in right lung Atypical Teratoid Rhabdoid Tumor (ATRT) – Brain Rhabdoid Tumor of the Kidney (RTK) – Left kidney engulfed by tumor Eliza is the only documented case of having all four diagnoses of rhabdoid tumor: Eliza is a sassy, energetic, and truly inspiring 2 year old who has been fighting a rare and very aggressive cancer since she was 10 months old.Įliza was diagnosed with rhabdoid tumor in June of 2019.
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