May 20, 2021 Latest post:
Dec 20, 2021
Dear friends, thank you so much for all of the prayers and support that you have showered upon Thomas and our family over the past 2 1/2 weeks. As many of you know, Thomas experienced some new, severe headaches on and off over a 2-3 week period. We saw our wonderful pediatrician at Oberlin Road Pediatrics, and quickly got an appointment to see a neurologist. A few days later, one day after Thomas had gone all day to school and played a night baseball game, and the day of a morning baseball practice and then golf with me (of course he was hitting much better than his mama😊), an afternoon MRI revealed a brain tumor. He was admitted that evening to Duke Hospital, and underwent surgical removal of the tumor on May 3. Unfortunately, what looked on MRI to most likely be a low grade tumor was confirmed instead to be malignant. Most was removed, but what remains needs further treatment.
Thomas did well post-operatively, and was discharged on May 11. Once we got home, his headaches returned with a vengeance. He was readmitted to Duke on May 14, and a permanent shunt (VP shunt) was placed between his brain and abdomen to help keep his intracranial pressure normalized. Hopefully, this will minimize any headaches. He came home again yesterday, and is feeling better so far. He is really tired, and gaining his strength back is now our most important goal.
Over the next 2 weeks, we will prepare for a six week course of proton radiation therapy. This type of radiation is a much better treatment for brain cancer, but is not available in the Carolinas. So, Tom, Sibley, Thomas and I will move to Philadelphia around the second week of June for this six week period- our summer vacation apparently! Children’s Hospital of Philadelphia (CHOP) is well know for this treatment, and is the number 1 children’s cancer hospital in the US. After radiation is complete, we will return home for a month of rest and healing, and will then begin a 4 month course of chemotherapy at Duke.
Thomas has been so cool and calm and incredibly brave through this all. And, his sense of humor is fully intact! We have had lots of laughs, and certainly some tears, over these past few weeks. At this point, we are totally happy to offer him ANY food that he wants- daily Chick-Fil-A meals, cool ranch Doritos, and lots of ice cream- and I told him today that I can’t wait for him to get back to playing video games with his friends (I would never have said that before)!!
Again thank you all so much for your love and support. We are so very hopeful that this cancer will be defeated. We are incredibly blessed by the very fact that we live in an area with world class medical care, and by our fantastic doctors, amazing friends, and for an army of prayer warriors. Please continue to pray for our boy to heal quickly and completely. I will continue to update his progress here. Please feel free to reach out anytime. We got this!