We have been documenting the beautiful Trinity's journey since our February / March 2020 newsletter, and have been sharing updates to our followers every month. Here is the latest Trinity update:
What a month for Miss Trinity! From having to reschedule her clinical trial trip, to Covid & pneumonia for her mama, to her little sister Anastasia turning 4, to Trinity and both of her sisters starting school... the month of August has flown by. (FYI: this is the first year that they are all school aged.)
Currently, we are having to rally our doctors to provide the documentation to keep on file at Trinity's school to ensure that she does not suffer heat exhaustion again. Trinity has Harlequin syndrome, which means that half of her body does not sweat caused by tumor damage, and therefore she overheats extremely easily and takes much longer to cool down in comparison to others. Because of our awesome pediatrician, I should be able to provide, advocate and educate Trinity's school on Monday about her medical needs. In addition to that, we are working on getting her clinical trial trip rescheduled, having her hearing aids fixed so that they stop hurting her ears (most likely, we are going to need new ear molds), and preparing for her scans in November, all while still taking 9 chemo pills a day.
Happy Note: Trinity is LOVING kindergarten, and making new friends.
In the #TrinityTough community, we have a moto of #WeFightTogether. Will you fight with us?