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!!
Well, I hadn't planned on posting another update so soon but this weekend wasn't all that we had planned either. Kori complained of jaw pain on Friday night. We thought it was because she hadn't worn her night guard for a few nights. She wears a night guard because she grinds her teeth while she's sleeping, which can cause her jaw pain. Unfortunately, she woke up on Saturday morning with a knot in front of her ear, just above the jaw bone, and a very swollen cheek. Needless to say it was very scary and concerning, especially to Kori. We know that she has active Ewing's cells in her body right now so your first thought is "crap! we don't need another lesion to deal with" After examining the knot a little more, I thought it might be a tooth abscess. So we contacted our dentist, along with communicating with Dr. Neville about other possibilities. We met with Dr. Shapiro (our dentist) at his office and he performed an oral exam, along with a full mouth x-ray because Kori could barely open her mouth enough to brush her teeth, there was no way she would have been able to do bite wing x-rays and get the films in her mouth. The x-rays didn't show any tooth involvement so we ruled out the tooth abscess and headed to the ER at Children's Mercy. They got us right in and did an evaluation and contemplated performing a CT scan, but then after looking at the x-ray we took with us from the dentist, they decided to call the Oral Maxillofacial doctor on call and have him come down to check her out. Dr. Baker, the oral doc, examined the inside of her mouth and determined that she had some damage to her parotid duct, which is where your saliva comes from. Apparently you have one on both sides of your mouth and it appears that Kori's is damaged, possibly she's bitten it in her sleep or it could be from a "stone." He asked her if she'd been experiencing dry mouth and she confirmed his suspicions. So it was determined that she has an infected parotid gland which basically is made up of several small glands that covers nearly the entire cheek and above the jaw line. He said that she may also have stones, similar to a kidney stone or gall stone, which would require surgery... hopefully that won't be the case. They started her on a high dose antibiotic and we are to follow up with the ENT doctor in a couple weeks because they are the docs that actually handle the parotid gland.
I am happy to say that two days of antibiotics and she looks like a new person. She still has a bit of swelling, but nothing compared to two days ago. Thankfully the antibiotic appears to be working and hopefully we won't have to deal with any stones or further issues once the antibiotics are completed.
I believe that is all that I have to report for now. Please keep Kori in your prayers that this infection heals up fast, that the radiation keeps working and that no new Ewing's lesions pop up... EVER!!!!
For those of us dealing with this winter storm of ice and snow, please be careful when you're out and about and bundle up to fend off the cold temps!