Update 02/11/14: Kori lost her 5+ year battle with Ewing's Sarcoma on 2/11/14 at 6:30PM CST. May she rest in peace and fly high with the Angels in Heaven.
Update 1/10/13: Unfortunately, the 3rd time was not our charm. But we have new HOPE!! Kori will be considered for a Phase 1 Clinical Trial at the Mary Crowley Cancer Research Facility in Dallas, TX on February 11th. We are praying that this is the answer to our prayers, & that once & for all Kori will kick Ewing's Sarcoma's ass & be able to live a somewhat normal life. I will keep everyone updated via our Journal entries, & want to thank all of you for continuing to follow Kori's journey & praying for her well being. It is much appreciated... NO words could tell you how much! Thank you & God Bless :))
Update: 7/28/11 - We found out today that Kori has relapsed for a 2nd time. She has multiple lesions (skull, pelvis and right femur) It's a lot to take in as there is no known protocol for a 2nd relapse of Ewing's. So today our journey begins again, but Kori is up for the challenge and we're hopeful that the 3rd time will be the charm!!
Update: 9/7/10 - Kori relapsed with a single spot to her lungs. She had a thoracotomy to remove the spot and thus began another round of Vincristine, Irinotecan and Temodar, along with radiation to the lungs and to her left tibia. She had a tumor in her left tibia that we had biopsied in August... the results were 99% Necrosis, but they still wanted to radiate and remove in early 2011.
February 2011 - Kori finished her radiation and chemo, and is doing well... thank the Lord :)) She had surgery on her left tibia to remove the tumor and we found out it was 100% necrosis (dead)... WOO HOO. She will be on crutches (no weight bearing) for 6, and then ween off of the crutches over the following 6 weeks while she undergoes Physical Therapy to build up her leg and stamina again.
April 25, 2011 - Kori had her port removed today, and we're praying that this is the LAST surgery she will ever have to endure. :)) Thanks be to God and to everyone that has continued to support us throughout this journey - we could not do it without you!!
Original Entry - December 2008: Kori was diagnosed with Ewing's Sarcoma cancer to her left pelvis with mets to the lungs in December, 2008. She was 13 years old at the time of diagnosis.
She has endured 25 radiation treatments and 14 rounds of chemotherapy, which lasted for 3 to 4 days inpatient for each round. She has undergone numerous tests and procedures, and has continued to amaze us with her tenacity.
As of today (01/18/2010), Kori is considered to be in remission. While we are ecstatic about this news, we are also determined to take this news 3 months at a time as Ewing's is a very aggressive cancer and has a tendency to come back with a vengeance. We will continue to celebrate each and every day and know that she is living her life to the fullest!!
First and foremost, thank you for all of the love and support we have received not only over the past six months since Kori's passing, but for the 5+ years that Kori battled cancer. We have met so many people through this journey... some we've only met via the internet, while others we've had the pleasure to meet in person, along with the countless souls that have entered our lives on a daily basis. We would not, and could not, continue to get through this life altering experience without you. So thank you, thank you, thank you!!!
It's hard to believe that six months have passed since Kori earned her wings. I think about her every moment of every day, and then some!! However, I know that she is with me at all times. I have her memories in my heart, her name and words tattooed on my body, and her spirit with me continuously!! We have had many encounters over the past six months that remind me that she's with me... from a penny on the ground, to a shooting star, to the latest spottings of the #15 everywhere. Our nephew, Zac, received his football jersey from his coach and it was the #15, my cousin, Bella, has the #15 for volleyball and then I found a candle from Celebrating Home that is blue with the #15 in rhinestones on the outside. Coincidence? Maybe, but I choose to believe they are signs from my beautiful daughter letting us know that she's here and with us at all times :))
We push on daily as Miss Kori requested. There are days that I find are more difficult than others, such as the 11th of each month... marking a milestone that I had hoped would never come, but is a gentle reminder of the loss we've experienced. Kori's 19th birthday (July 8th) came and went, but John and I took a trip to South Dakota to begin our traveling journey that Kori so dearly wanted us to take and enjoy. We took her ashes, along with her dog Charlie and our first baby of the family... our beloved dog, Jake. All of our kiddos have been cremated so we mixed their ashes and took them along with us. We went to Mount Rushmore in SD, and left some ashes in a spot with a beautiful view of the Presidents. Then we were off to Devil's Tower in Wyoming. We climbed the rocks and discovered an amazing spot looking out over the landscape in front of the tower under a a fairly young pine tree that I am sure will be there for a long, long time. We collected a couple rocks to bring home as reminders of our trip :)) Our final destination on this trip was to the Omaha Zoo. Kori has always loved the Henry Doorly Zoo since she started visiting with her Aunt Chris & cousin Zac. So we found a spot in the garden where the birds are located and left a few ashes in a discrete spot that we'll know and can visit from time to time.
Our next adventure will be in mid-September when we travel to Muscatine, IA. Kori loved soccer, and the feel of natural grass under her feet vs. turf. The fields in Muscatine are what Kori loving referred to as the "Field of Dreams" and were Kori's favorite place, besides Notre Dame, to play soccer. So we're heading out to watch our friend, Kelsey Mueller, play soccer and leave Kori's stamp on the fields there too. Our goal is to visit all 50 states... we have a lifetime ahead of us to make this happen and fulfill her last wishes to take her and the boys along for the ride. Next summer we're planning on a cruise to Alaska to whale watch and enjoy the beauty of the landscape. It should be a lot of fun as we are planning on several family and friends joining us for the trip, which will make it even more special.
We continue to keep her mission to find a cure and help the kids at Children's Mercy Hospital (CMH) alive, as well, through various i-ROK Foundation events. We recently had our 5th Annual 5K Run/Walk & Pancake Breakfast at the Excelsior Springs HS. We had nearly 300 participants and raised $7,500. The bulk of the funds raised will be used to help fund the new Pet Therapy Program for the HEMONC Dept at CMH. We made a $5,000 donation towards this program in June, which will provide a therapy dog for the 4 Henson patients and those patients in the HEMONC Clinic. The kiddos undergoing chemotherapy, transplants, etc. cannot leave the floor during treatment because they have compromised immune systems, and can't be around other people. So with this new program, the HEMONC Dept. will have their own dog who will basically visit the kids in their rooms while they're undergoing treatment vs. the kids going to the dogs that are visiting the hospital with all the other kids from other floors. I've seen these programs work wonders for the kids and their spirits, so we are very honored to help with this project as we know Kori would have been thrilled to have had this opportunity during her treatments. She learned about the program in January, when she was there before she came home on hospice, and she was very excited about it. The money we raised at the race will help fund the program for the next 5 years. Thank you!!!
We also made a $10,000 donation in June to CMH for their KC Cares Walk that will be held on Saturday, September 27th at Sporting Park in KC, KS. All proceeds from the walk will go to the Cancer Center and fund research and desperately needed equipment for the latest and greatest treatments. We will be getting a team together to walk in Kori's honor. If you're interested in joining us, please let me know via e-mail at email@example.com and I can provide more details.
The i-ROK Foundation will also be holding our 1st Annual Memorial Golf Tourney this year on Wednesday, September 24th at Winter Stone Golf Course in Independence, MO. We have several sponsorship opportunities and NEED teams of four (4) if you're interested in joining us. Please let me know if you'd like to help us make this event a success by e-mailing me at firstname.lastname@example.org and I'll send you the flier with all the details.
I am sure there are many things that I am forgetting to share with you, but it's been six months and I thought it was time to update you all. While this was not the path we would have chosen, John and I are navigating the waters daily and are doing everything we can to make the best of the situation. We want to honor Kori's wishes that we keep on living and enjoying the life that was cut short for her.
Thank you again for checking in and continuing to support us during these challenging times. We could not get through this without ALL of you!!!