Megan Culpitt

First post: Mar 22, 2021 Latest post: May 20, 2021
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. In mid January 2021, Megan noticed a numbness in her teeth that started to travel towards her left eye. It was initially diagnosed as a sinus infection and also referred to a dentist. Thursday February 18, 2021. With continued pain and the addition of frequent headaches her dad pushed her to go back to the doctor where they performed an MRI which showed a mass in her nasal cavity. The following day (Friday,  February 19, 2021) she was seen by ENT Dr. Sdano who examined her and obtained several samples of the tumor. He ruled out infection and gave us a "best case scenerio" of Lymphoma, as it is curable with both radiation and chemo.   Hoping for results the following Tuesday. Wednesday February 24. Dr. Sdano called to inform us Lymphoma had been ruled out. They believe it is Rhabdomyosarcoma. They are waiting on pathology for a definitive diagnosis. He explained the subtypes that are more common in children respond well to treatment, while the "adult" subtypes (alveolar)  are more aggressive and do not respond as well.  Friday February 26. PET scan to see if there is metastatic spread. This came back negative! Saturday February 27. Alveolar Rhabdomyosarcoma confirmed. Plan to start Chemo ASAP! Monday March 1.  Met with pediatric chemo doctor Dr. Orozco and adult chemo doctor Dr. McGee.  There is a chemo study she can be in.  The plan is 14-16 months of chemo with Radiation to start at week 13.   Wednesday March 3.  Chemo port placed.  Thursday March 4. Lumbar puncture and Bone marrow biopsy done which were required for the study.  Both came back with no metastatic spread. Friday March 5.  Met with Radiation Oncologist Dr. Conway. Afterwards,  we met with the pediatric Chemo team. After presenting Megan's case to tumor conferences,  the general consensus was to treat more aggressively than the study called for and to start radiation sooner than 13 weeks, due to the fact that she is Group III, Stage III with brain involvement. For these reasons we decided to go off study. She was referred to Dr. Parkes in Madison, a sarcoma expert.  Will still begin chemo in La Crosse as planned.  Monday March 8.  First day of chemo!  Tuesday March 9. Megan slept most of the day. Had a video call with Dr. Parkes. She is happy to oversee Megan's case but we can continue treatment in La Crosse.  Wednesday March 10. Megan's face is swollen on the left side.  She is scheduled for her nuelasta shot this afternoon.  I called to request a doctor come to take a look at the swelling. Dr. McGee, Dr Peters and Dr Conway all came to see Megan. Dr. Conway scheduled MRI and CT/Simulation with a plan to get started on Radiation in week 4.  Thursday March 11. MRI .  Upon returning home, Dr. Conway called to inform us the tumor had grown since the initial MRI and wants us to come back in this afternoon to do the CT/simulation (initially scheduled for a later date) so we can move Radiation Treatments to week 3.  Friday March 12. PICTURE DAY!  I wanted to get family pictures done and Megan requested to do it while she still had hair.   (Thank you to my sister Pam, our photographer! ) Wednesday March 17. Second day of chemo. Thursday March 18. Megan lost most of her hair 😪.  Thank God we did pictures last week! Friday March 19. Radiation therapy "dry run".  Dr. Conway met with me and told me there was no way they were able to save the optic nerve with treatment.   She will likely lose sight in her left eye.  There is also concern that because her swelling went down, her therapy mask is no longer fitting. Treatment will continue, but will redo CT/simulation next Monday to replace current plan ASAP.   Shaved the remainder of her hair off. Kept a small braid tied with her favorite color (royal blue) ribbon. 

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