Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Please read our JOURNAL UPDATES for the latest!
Beginning last fall (2017) Bailey began to have some intermittent swelling and tenderness of the gums in her right rear jaw. Since she was only 15, we simply thought that it was the beginning of her wisdom teeth trying to come in. The episodes didn't last long and we chalked it up to movement of the wisdom tooth on that side.
Fast forward to the week of January 30, 2018. Bailey notices that the area is flaring up again on Tuesday, 1/31/18 and doesn't think much about it since she's had these flare ups off and on since the fall.
Thursday, 2/1/18, prior to dance class, Mom notices that the swelling seems significant.
Thursday, 2/1/18, late evening, Bailey returns from contra dancing with friends and the swelling has doubled in size since Mom saw her around 5pm. Bailey is experiencing some pain and throbbing that night.
Friday, 2/2/18, Mom wakes up Bailey and swelling has doubled in size overnight. Bailey goes to urgent care and is given an injection of antibiotics and a 10-day prescription. Urgent care physician refers Bailey to see a dentist on Monday, 2/5/18, saying that the swelling is most likely an impacted wisdom tooth.
Monday, 2/5/18, Bailey sees Dr. Anders, DDS, and digital x-ray reveals mass(called an aggressive cyst at that time) in lower right jaw. Bailey is referred to Rockcliff Oral Surgery group.
Tuesday, 2/6/18, Bailey sees Dr. Hayes at Rockcliff Oral Surgery. CT scan is completed to reveal major bone loss from what at that time is being referred to as an aggressive cyst. Dr. Hayes refers Bailey to Dr. Carlson at UT Medical Center in Knoxville. Dr. Carlson is unable to see Bailey until February 27th. Mom and Dad search for another oral surgeon in Knoxville.
Tuesday, 2/13/18, Bailey sees Dr. Slater at Southeast Oral Surgery. Dr. Slater hopes that the cyst will respond to a decompression device and that the bone in her jaw will rebuild itself after the cyst has shrunk. Bailey's back two molars on her right bottom side (30 &31) roots have been degraded by the cyst and will be extracted, a biopsy will be performed and the decompression device will be installed.
Tuesday, 2/20/18, Bailey has oral surgery performed by Dr. Slater. She does great with no complications. Awaiting biopsy results.
Tuesday, 2/27/18, Bailey has follow up with Dr. Slater. The biopsy reveals that the mass is not the type of cyst that will respond to the decompression device that was installed the previous week. The mass is a tumor called an ameloblastoma. The ameloblastoma has compromised the jaw joint along with significant jaw bone loss. Dr. Slater refers Bailey to Dr. Josh Campbell as UT Medical Center. Dr. Slater explains that the ameloblastoma must be removed, all of it, or the tumor could return. The tumor is benign at this time. Bailey will need to undergo surgery to remove the mass and have a bone graft from another part of her body to rebuild her jaw bone. It is important to have the bone replaced at the time of the removal surgery because scar tissue would build up after removing the ameloblastoma and it could be impossible in the future to repair the bone structure and jaw joint in that area.
Friday, 3/9/18, 3:30 pm - Bailey had a complex CT scan and did great! She had to get an IV for a dye to help with the vascular images. This was done to help to give Dr. Campbell and his team the best pictures and information around the tumor so that they can work out a game plan for the surgery.
Monday, 3/19/18, 8AM Bailey had her first appointment/consult with Dr. Josh Campbell. We didn’t learn much that we didn’t know already except that we feel confident about Dr. Campbell & his staff including medical resident, Dr. Darin Johnston who were extremely helpful in answering our questions regarding the surgery to come, recovery time expected and more. We both connected with Dr. Campbell and discovered that he has performed this surgery multiple times before even though it is
Friday, March 30, 2018. Met with Dr. Stacy Stephenson, plastic surgeon at the University of Tennessee Medical Center. She explained the surgery of harvesting Bailey’s fibula to replace her jaw bone. How that will effect Bailey, best case scenario hospital stay time, recovery, physical therapy and more.
Bailey had another CT scan of her leg to help the surgeons with 3D modeling prior to the surgery.
The role of the plastic surgeons will be to work in tandem with Dr. Campbell’s oral & maxillofacial team to harvest the bone from Bailey’s fibula which will replace the bone that has deteriorated in her jaw due to the ameloblastoma tumor. The reason this particular bone is used most commonly with this type of surgery is because it has the proper blood vessels connected to it, that can be connected to the ones in the jaw area getting good blood flow to the area for the ability to grow. Bailey will likely lose some additional teeth in the area, but Dr. Campbell feels confident that she can receive implants in the future (he said at least 5 months after the initial surgery.)
On April 16, 2018 - Mom received an email from a friend suggesting that the family reach out to the Shriners Hospital in Greenville, SC. The intake specialist noted that the facility in Greenville specializes in orthopedic surgery but then referred to the Shriners Hospital for Children in Cincinnati, OH. The intake specialist there confirmed that they could perform the surgery needed for Bailey’s ameloblastoma and proceeded to secure and appointment for Bailey on May 1, 2018. Potentially, switching surgeons and facilities could result in low to no cost and certainly not $18,500 upfront. So we’ve reached a point where we’re not sure what to do. Medical records have been requested to be sent to the SHC (Shriners Hospital for Children) for the surgeons review. Mom has requested a telephone consult prior to the scheduled May 1st appointment.
The good news about this is the financial assistance. The funds raised so far can be used for future dental implants for Bailey. The downside is that both Bailey, Mom & Dad felt confident with the surgical teams at UTMC but are willing to explore this new option. Also, having a strong support system in Knoxville is a big plus for everyone.
May 1, 2018 - Consult with Shriners Hospital for Children in Cincinnati, OH - We have decided that SHC is the best fit for Bailey & our family the surgery will take place in early fall. We will provide more details as they develop.
Due to UTMC requiring $18,000.00 upfront and one surgeon requiring $4,500 upfront and the other $3,998 upfront, we have chosen to have the surgery at Shriners Hospital for Children in Cincinnati, OH.
We have a crowd funding on GoFundMe, we do not know exactly how much we will have to pay at Shriners but we know it will be much less & nothing upfront . Approximately 6 months post surgery Bailey will require dental implants. Here is the the crowdfunding link:
gf.me/bkb76
Sharing on social media is really helpful and were so grateful for all of the support and contributions.
Questions that we had & answers:
When? October 19, 2018 at Shriners Hospital for Children in Cincinnati, OH
Recovery time? 1-2 days in ICU directly after surgery then potentially a week or so in the hospital afterwards. All in all maybe two months to resume normal activity. There will be some physical therapy involved probably for her jaw and her leg. 6 weeks in a stabilizing boot to help her leg recover from the bone graft.
Scarring? Dr. Elhadi Babiker is a maxillofacial & cranial plastic surgeon as well as an oral surgeon we feel confident that his skills are comparable to Dr. Campbell’s. Dr. Gordon will be the other surgeon involved.
Lasting effects? It is likely that after the surgery that Bailey will loose feeling in a small part of her face (the lower right lip and chin area.) It will strictly be a nerve and not muscle so her smile should not be effected.
The actual surgery will last approximately 10-12 hours.
This is what is happening and what we know, right now. We will update folks as we know more on this site.
Bailey has continued to excel at recovery! Her ten day post discharge appointment with Dr. Elhadi & Kim, her physical therapist went so so well. She walks slowly but with out any limping. Her steri strips have finally completely come off and the plastic surgery done on her jawline is amazing, very little visible scarring & swelling continues to diminish 🎉 Bailey’s leg looks great too, no swelling, no more ace bandage wrapping (although her Dad did an amazing job keeping up with that!) Bailey is no longer on a ‘soft’ diet and has resumed eating mostly all foods.
On February 5, 2019 she’ll return to Shriners Hospital for Children Cincinnati to see her surgeon again. He will see how well the bone in her new jaw is doing and that visit will determine when she might be ready for her tooth implants.
Bailey’s jaw may be ready for a temporary partial. A denture in place would allow her to chew on that side. How strong the bone has become will determine when the next phases happen.
Once again, during this season of Thanksgiving and blessings we share our heart’s gratitude with you for the continued love, support, and prayers that have been sent to Bailey, John and myself.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Bailey Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Bailey's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
