Luckily we were able to bring Tristan home a few days before Christmas! A bunch of local ladies helped me wrap gifts! Every thing MERRY & BRIGHT put up amazing Christmas lights for us!!!
A friend sent her choir group from the church to sing Christmas Carols outside and Tristan was able to see two of his friends outside (while socially distancing & masked).
Where we stand: Tristan's last bone marrow biopsy (BMB) showed NO evidence of the BCR-ABL gene (which is good), but still some evidence of leukemia cells.....so he had to start back on oral Dasatinib (chemotherapy).
He is on cyclosporine to help prevent rejection which makes him further immunocompromised. Having said that...."there us NO place like home". We had all 4 family members in one house for Christmas....and we haven't been together as a family for 6 months.
The point is.... it's important to appreciate NORMAL!!!!
Tristan is seeing a VNA once a week. He is on IV fluids & electrolytes at night to prevent kidney failure. Matt has turned into a "night nurse" lol. Tristan hit a milestone and moved back to his own room. He is enjoying hanging music posters, records, and he is putting his fancy electronic drum set that he got (Thank you to everyone for the generous gift cards ,donations). He has good days and bad days.
He is eating now and slowly gaining strength on good days. On bad days he is nauseous and has bone pain. He is in steriods for Graft vs host disease which causes emotional ups & downs. He is being weaned off and we will see if his GVHD symptoms resolve.
He has to go to Dana Farber Jimmy Fund clinic 1-2 x a week to get labs, examined and sometimes transfusions. He is on two clonidine patches for high blood pressure which is a side effect of his treatment. He will get a repeat Bone marrow biopsy at the end of the month that will further guide his treatment plan.
Positives are: he had his transplant and we are settling into a new normal. His hair is starting to slowly grow back. We are making future plans for when he's out of isolation so he has things to look forward to!!! We work with him daily to get his strength back and to improve his nutrition.
He is doing school online when he feels well enough and his goal is to not miss a year. He is able to "game" with his friends which luckily is a way of socializing other than with his parents and brother. Another positive note is how much closer Aidan & Tristan are getting.
We can't thank you enough for all your support! We are going to stop the mealtrain for now as there is another family in Duxbury the Ladds who need your help now. Our heart goes out to their family. We are blessed to live in such a supportive community. ♥️