The results of Trip’s scans were good. The MRI showed minor improvements. He will always have pituitary abnormality, but the thickening of the pituitary stalk has shrunk. Nothing new was apparent, which is awesome news! The skeletal survey showed the affected bones have healed or are healing. We know that will take time. Overall nothing looks like active LCH inside his body.
I felt good about the results and then Dr. Martin found an area on his scalp that is obviously LCH. Stopping chemo with lesions isn’t promising to the doctors or me. We believe the methotrexate is suppressing the disease, but once off it will likely come back. Dr. Martin said he would defer to Dr. McClain (histio expert) as to what to do if it does come back. I will push all doctors to put him back on methotrexate so he can live as normally as possible (if it is only in his skin), but realistically he might need something harsher.
He finished chemo this weekend and will stop for a month. We will see what his body does in a month’s time without treatment. I for one am down on my knees praying to the sweet heavens above for his little body to prove how strong I know it is and kick this disease in the butt once and for all.
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