Bailey’s Rare Jaw Tumor Journey

Bailey just turned 16 and she is facing a 10 hour surgery.

Ameloblastoma is a rare benign tumor that deteriorates the jaw bone. Caused by a mutation of the tooth enamel of teeth that have not erupted (in Bailey’s case her wisdom tooth.) Radical surgery to remove the tumor with wide margins of healthy tissue to eliminate any risk of the tumor returning and additional surgeries. A bone graft from Bailey’s fibula (leg bone) will be done in tandem with the removal of the tumor.


Our immediate need in order for Bailey to be admitted to UTMC has decreased from $26,498.00 to $18,498 (10k to UTMC, 4500 to the plastic surgeon doing the bone graft, 3998 to the oral surgeon for surgery, facilities & anesthesiology)

Thank you for visiting. We do not know how much the total for surgery(ies) and recovery/rehabilitation will cost. We've put $75K on here as a goal but as we learn more that amount could change. Any financial support to assist in the medical bills that we will be incurring will be greatly appreciated.




Here’s the story:

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 is scheduled for a complex CT scan 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, Bailey met with Dr. Josh Campbell & team. He explained the surgery & we felt confident of his skill and expertise.

Friday, 3/30/18
Bailey met with Dr. Stacy Stephenson, the plastic surgeon who will perform the bone graft portion of the surgery. Dr. Stephenson explained the procedure to remove a portion of Bailey’s left fibula to replace her deteriorated jaw bone caused by the ameloblastoma tumor. This portion of the surgery will be done in tandem with Dr. Campbell as he begins the procedure to remove the tumor. Arteries and veins will be matched up and up to 48 hours after the surgery Bailey will be monitored closely in ICU every 20 minutes to watch for blood clots. Her leg will be in a boot for up to 6 weeks, after a couple of weeks she will be able to sleep without the boot. Because the muscles on the front of her calf will be pulled away to access the fibula, she will likely have to have physical therapy. Dr. Stephenson indicated that Bailey will most likely not be able to eat or drink for 2 weeks post surgery and a feeding tube in her nose will be used for nutrition and hydration. We asked if she would be able to do this from home or if she’d be hospitalized for two weeks. The best case scenario would be that after the first two days in ICU that days 3, 4 & 5 in a regular hospital room with everything going great that she could be released to go home.

May 3, 2018 - pre-surgical appointment with Dr. Stephenson

May 7, 2018 - Surgery is scheduled for 7:30 am with arrival for Bailey at UTMC at 5:30am

We discovered today that the costs for this procedure just for UT Medical Center is between $80-$100K this does not include the two surgeons, the anesthesiologists, post surgery doctors visits, home healthcare, physical therapy and any other surgeries needed (dental implants for teeth being removed.)

We have to come up with at least $18,498 before they will admit her to UT Medical Center for the surgery.

This far, we’ve paid everything out of pocket but we don’t have the amount needed to be admitted for the surgery on May 7, 2018.

This tumor has been described as aggressive, it is our intent to have the surgery completed as soon as the surgeons are available.

We are grateful for any support we can
receive.

UPDATE

May 1, 2018
Bailey & Mom traveled to Cincinnati, OH to the Shriners Hospital for Children. We met with Dr. Elhadi Babiker, surgeon. We both liked the hospital as well as the surgeon & since we are still short on the financial requirements for UT Medical Center in Knoxville have decided to have the surgery at Shriners which does not require funds upfront for this surgery. The surgery will likely take place in early fall. Dr. Elhadi let us know that the urgency is not so great that waiting a few months will cause more problems. Also we are celebrating a bit because this means that Bailey will get to dance in the Spring Showcase recital!

If you would like to help in some way and are unable to contribute financially but have something else of value to contribute (art, music, food, goods, or services) please contact Bailey’s mom, Tricia.


This is what is happening and what we know, right now. We will update folks as we know more on the caring bridge site.

Http://www.caringbridge.org/visit/baileybaehr




























Caring Bridge Site for Bailey Baehr

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Organizer

Patricia Baehr 
Organizer
Farragut, TN
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