Olivia enjoyed decorating trees and gingerbread houses over the weekend with her siblings! Since she spends so much time at home and loves the holidays she was more than “encouraging” us to get the house ready for Christmas!
This week she was supposed to have her 3rd cycle of the chemotherapy Nalarabine, but because of a shortage we are scheduled for next week. The doctors are not concerned with the extra week between treatments. I can only hope the reason for the shortage is that this chemo is doing wonders to cure cancer and everyone wants it! As we’ve mentioned before, Olivia has been able to handle the nalarabine better than any other chemo....no hair loss, no nausea, nothing we can visibly see it doing damage to her body! Her appointments are scheduled for next Monday, Wednesday and Friday and we hope for great traveling weather for the three trips to Indy!
Olivia is part of F.I.S.T. (Forever Improving Steuben county Together). This is a philanthropy group for students in the 3 Steuben county school. Olivia was chosen in 7th grade to represent her class throughout her middle school and high school career!
Olivia and FIST member Isabella, made an amazing S’More Pie that will be auctioned tomorrow from 6am-1pm! You can go to www.wlki.com beginning tomorrow morning to see all of the pies in the auction! LOOK FOR PIE #55! If you’d like to bid on it call 260-668-4488 between 6am-1pm! All money raised from the pie auction will go to Shop with a Cop in Steuben County!
Day +98. Today is the start of another round of chemo. Every morning of an appointment we drop Olivia off at the front door of the ROC (Riley outpatient center) because it’s less walking for her. Although she has her phone, most days I worry if she has the strength to get there. She insists on walking and no wheelchair! We park the car and meet her in the waiting area of the infusion center where we wait until called back. After weight, height, labs, and possible dressing change then we go to a room. Today we will wait approximately 60 minutes for the pharmacy to prepare her chemo then the infusion is 2 hours. While we wait Olivia has breakfast and takes her 10+ morning pills. After chemo we drive home 2-1/2 hours so we can have family normalcy until we do this again in 2 days! All of this with a smile on her face (99% of the time)! It is quite the journey but what we have learned from this experience is immeasurable!
Olivia is still impatiently waiting for Pet scan results from yesterday’s test! As soon as we know something we will pass it on to all of you!
We’ve already been to Riley Hospital for blood work and meeting with the doctor. Now we are checked in to IU Hospital for another PET scan. We should know preliminary results by the end of the day. Olivia is down another 2.5lbs this week after being down 3lbs last week. We will be pushing the fattening foods and drinks this week even more than before! Today when filling out the questionnaire we have more info to add than before....Prior radiation therapy.
I remember the days of yearly pediatric visits when I would fill out questionnaires and would be annoyed that I even had to do that because there was nothing new from the prior year....my kids are healthy! What I wouldn’t do to go back and fill out those questionnaires ONCE a year and have NOTHING to put on them!
Prayers today for a clear PET scan and continued strength and endurance for Olivia!
Olivia has not been able to really hang out with friends for about 2 months! One of the things she’s really started enjoying is making Dreamcatchers! So today that’s what Olivia and 4 of her friends spent the afternoon doing together!
Olivia surprised all of her friends and family by going home yesterday! She decided to call and text everyone when she was about an hour from home!
Today makes 31 days after the transplant. Liv had her first clinic appointment today after being released from the hospital. They said everything still looks great! Her ANC is at 2800!!
Liv has been feeling very good. After clinic today she spent some time with Peggy, one of the Riley teachers, doing some school work. She also did an interview with news channel 15 at the apartment.
Right now she is in the Kitchen making meatloaf for supper, she loves to cook! Tonight will be the first night our family has slept under the same roof in 36 nights!
God is good! Have a great weekend!
T+29 She’s out! Thank you to the Liv It Up community!!! The support from each and every one of you made this day possible!
As most of you know Olivia's journey still has a long way to go, but she has cleared a major hurdle! She has been released from the hospital today!!!
First and foremost we want to give glory to God for healing Olivia to this point and for the strength and perseverance he has given her. We ask that God continue to be with Liv over the next weeks, months and years!
We want to thank everyone who has prayed, followed, and emotionally supported Liv and our family during this time! Your support means the world to us and has made this journey so much more bearable.
We also want to thank everyone who supported us financially. The support from the community was nothing short of amazing! From the $1 donation to the $50,000 donation we will forever be grateful! There are so many people to thank that helped to make the Liv It Up campaign a success. Friends and family that helped organize and bring to life the Liv It Up campaign, things came together so fast and furious, it was a major amount of work. Friends that organized, planned and worked so hard for the Angola block party and the Sylvan Cellars event. So many more people that pulled together countless other events and fundraisers. Many of you gave so much more than money, you gave your time, you gave yourself! We could start naming so many people personally that we are forever indebted to but we know we would forget to mention someone. Know that every single person who has had anything to do with the support for Liv and the Liv It Up campaign will always have a special place in our hearts. We have been called to forever work to pay your generosity forward!
As parents when we meet the parents of other kids with a terrible illness we have an instant connection, we are all part of the same “club”. None of us asked to join this club but if the illness selects you, you’re in. We all have an understanding of the battles we face as a family. We have certainly seen through the journey with Liv there are far too many kids that have to fight the battle. The cool thing is they all fight with a smile on their face! Liv It Up has the opportunity to make things just a little bit easier for some families to fight the battle! Trust us when we say it can have a big impact!
The Liv It Up campaign has been blessed far beyond the needs of Liv thanks to your generosity! We have a committee setup to work through a process to get the extra money to other kids and families fighting chronic illnesses. Please pray that this process puts the money where God sees the best use. Liv It Up still has big things ahead, thank you for your support and we ask that you continue to support Liv It Up! We’re not done yet!!!
Prayer warriors please keep the prayers rolling, Liv still has a long journey to travel and Liv It Up has a lot of work to be done!
To everyone that is a part of the Liv It Up community, please accept our sincerest “Thank You” for the blessing you have given our family!!!
Tom, Megan, Olivia, Evelyn, Preston Stoy
The entire Stoy and Tyler Families