Dear Andy,
Back in May of 2024 our sweet Bogee Lee began to have regular ear infections and what practitioners thought to be a return of torticollis from infancy. He was treated throughout the summer but we knew somethingjust wasn’t right. His symptomsbecame severe at the end of July and his overall health began to decline. In August images were ordered and showed that Bogee had a rare, complex, large brain tumor.
The mass stretched from the lower portion of the dura mater on the right side of the brain, out across most of his brain stem, into some of the clivus bone and bone of the skull base, encapsulating almost all of his vertebralartery, wrapping over C1 and C2 vertebrae. His first major surgery was very successful. God guided the hands of three amazing neurosurgeons, including Dr. Willard Thompson, and their staff to remove about 75% of the intradural tumor portion, all that covered C1 and most of the tumor on the brain stem and C2.
In August, we receivedthe news that Bogee had been diagnosed with a Poorly Differentiated Cervical Cranial Chordoma (PCDs). PCDs are rare in adults but almost unheard of in children. These tumors are very aggressive in nature and we had to seek an “expert”in the field and were sent to the Children’s Hospital of Atlanta for his initial treatment.
Bogee began chemotherapy in September at CHOA and in Octoberan MRI showed an excessof spinal fluidon his brain. He underwent an Endoscopic Third Ventriculostomy (ETV) to relieve the pressure, which worked beautifully. He continued chemotherapy for months at the Children’s Hospital in Savannah, also going in and out of the hospital at times due to side effects. We are so thankful for our special friends in Savannah that have cared for Bo so well.
By the graceof God, his MRI in February showedthat all of the visibletumor was dead! Since PDCs are so dangerous, we were excited but knew Bogee still had a long journey before him. He continued receiving chemo until the beginning of March.
In April 2, we traveled to UPMC Children’s Hospital in Pittsburgh to get his next phase started. Surgeons performed a craniotomy through a frontal approach. They went in
through Bogee’s nose to get to the center of his skull to get to work. Doctors were able to remove all tissue & bone in the cranial area that was impacted by the tumor, including Bo’s entire right occipital condyle joint. Some tissue was removed from one side of Bo's nasal septum, along with other donated, live tissue and placed it in the most inner area of the skull to replace the space the tumor had lived in. Since they removed a good portion from his right septum, they had to replace it with tissue from the left and more donatedtissue. He had a splinton each side of his nose to keep the area stable until things integrated & healed.
Bogee remained sedated overnight to undergo his spinal fusion the very next day. Doctors removed the remaining diseasedbone and tissuearound C1 and C2. Then, void areas were replaced with donated bone and wired it together with two special devices through C3 and C4. Bogee has a custom CSO brace to help join the wire, new bone, and what was left of C1 & C2 to grow into a new “sheet” of bone.
A week later, he went back to the operatingroom to have splints removed,clean his entire nasal septum, and check all surgical margins from the frontal approach. Bogee had recovered nicely and was moved to the in-patient rehab.
We returned home from Pittsburgh in May. Since Bogee fared well with all of his operations, and doctors decided his chemotherapy needed tobe reinstated at the end of June.Again, because his tumor is so aggressive in nature, the area must be attacked harshly by all possible means.
Bogee completed his 17th and final round of chemotherapy in mid October. Being home he has been so good for Bogee. Every day we see more improvements. His last MRI and CT in November showed no signs of tumor! His spine is still not completely fused so he remains in the CSO brace. But he is still recovering so well.He loves to be outside,playing basketball or riding our old golf cart. He also enjoys playing with any type of ball or car/truck inside. He loves listening to music on his Tonies Box, dancing, and babbling all kinds of sweetness! Disneymovies, old and new, have also become a favorite pastime for Bo.
This month Bogee will meet with radiation oncologist team at Emory. He will receive protonbeam radiation at their facility, Monday through Friday,for approximately 7.5 weeks. Hopefully we can wait until after Christmas to begin but we have been told that is unlikely. Holiday schedules will still allow us time at home with family and for that, we are grateful.
Since last August, Bo has engaged in physical, occupational, and speech therapies. He has made leaps and bounds meeting milestones that were delayed. He will continue to participate in these therapies for some time.God has broughtus so far and we must continue to trust the process.
We have been so blessed and therefore don't need much. Bogee has shown so much interest in his Disney movies during his down-time. After his treatment is complete and he is stable (hopefully March!), we plan to take him and his big sister to Disney World or maybe even on a Disney Cruise. Anything you feel led to contribute towards our trip will be greatly appreciated. We plan on giving the trip to the children for Christmas!
This experience has taught us all so much and the power of prayer is at the top of the list. Please tell anyone who is a believer to pray for our specialboy. God has such great plans for our family and we believe this trying chapter is a significant part of it. We have faith that God will continue to use us to live out this journey for his higher purpose. We have been so blessed, and we truly appreciate everyone’s thoughts, prayers, and support in honor of Bogee’s battle!
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