Somehow I have let almost 10 weeks pass without an update! So sorry!! Life has been crazy with work, appointments, holidays and fun! We start week 52 today, which means 68 more weeks to go! We have been pretty much in an "easy" chemo routine lately and have loved watching Olivia get stronger and bigger each week! She is finally getting more energy, confidence, hair and appetite and her sassy, yet bossy at times, attitude is back to full force and we couldn't be happier! A couple of weeks ago Olivia had her LAST lumbar puncture/ spinal tap until the end of treatment to test her MRD and check remission status. We are so so happy to say that she continues to be in remission so the chemo is continuing to do its job!! Her counts have been in the "normal range" for a while now, which you would think is good, but it actually makes me nervous.....her Doctor would like to see her ANC be around 700-1500 and shes been quite a bit higher. They want it to be lower to show the chemo is still killing off cells. With her counts being higher it just shows that her bone marrow is able to tolerate more chemo so she will get bumped back up to a full dose of today's chemo. Toady marks one of her last two long chemo days, where she gets 5 hours of chemo (Cyclo/Arc). We are looking forward to her last one being on 2/3 and having shorter clinic days! Olivia is continuing to fight the Memphis crud and I think has her mamma's sinus issues, I am not sure who is keeping who sick at this point! We just got done with Christmas break and Owen loved getting to go a couple of clinic visits and I did too! We had a great Christmas, even though it went to quick! We got to go to church this year, something we had to skip last year! Olivia stayed in the sanctuary while Owen played with his cousins in the nursery.....because kids and germs and flu season :) but she did great! It is crazy how much has changed in a year, last year at this time she was just getting done with being on 24/7 chemo and wearing a backpack for 2 months and this year she is able to keep up with Owen and run and play! During our last clinic visit we had a follow up with the Total 17 Protocol team that checks to make sure she is not having any side effects from neuropathy, and where she had some deficits previously she has passed the tests on now so we are excited to see improvement there too! This season has been an emotional one for me, watching her be able to do so much this year that she was not able to or struggled to do last year. I am eternally grateful to St. Jude and her team! We finally feel like we can kinda breathe a little easier and that life is becoming a little more predictable, although anytime she feels the slightest bit warm all that goes out the window. Did you know we have to be at St. Jude within 30 minutes if she has a fever of 99.5 or more?! We also got some amazing news right before Christmas! Thanks to an organization called Lighthouse Family Retreat, our family will be attending a paid in full, week long beach retreat on Panama City Beach this summer, pending approval from Dr. Pui! We have heard nothing but amazing things about these retreats and they are all families that are living a life with childhood cancer in it. We are so grateful and looking forward to this opportunity in June! The St. Jude Marathon Weekend was so amazing this year! Thanks so everyone who supported Team Livi through buying a shirt or donations to St. Jude we were able to raise $20,134 as a team!!!! That is so amazing and about double to what we hoped to raise! We hope to see it increase every year! We are already planning for 2021, which will be her end of treatment year! Peter has taken over as Director for a trail race in Memphis and is renaming it to FORTITUDE for what the kids at St. Jude have to show to go through what they do. We will be putting this on as a race to benefit St. Jude, however it is a little different than the typical road race. This will be a trail race through Nesbit park in Bartlett and will offer a 25k and 50k route. More information can be found here: https://fortitudetrailrace.com/ Registration opens up February 1, 2020 and we are still looking to add more sponsors if you or your company are interested! We hope this becomes an annual race in Olivia's honor to benefit St. Jude. Whew! I am sure I have forgotten some stuff, but I think that's the important stuff!! I promise not to make it 10 weeks before another update! Thank you so much for your continued support!!
With brave wings she flies! Leukemia won't keep Livi down!!
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