Updated: Nov 2, 2020
Been awhile since I last posted but life has been a little hectic. Our family moved to Virginia after previously living in Alaska for three years and staying in Washington State for 3 1/2 months for Amelia’s health. We have been getting situated in our new home and trying to get adjusted to her new schedule.
The Update: Amelia got sedated scans a couple months ago and we were optimistic they were going to show a positive change with her cancer. The doctors were confident for at least a partial disease or maybe even no active disease at all! They said clinically she was doing great! We were beyond happy to here this. So when we got called in to get her results from the scans we were shocked by what we heard...her cancer had no improvement...her lungs were just as bad as four months ago and her lesions were still all over her bones. Not only did her scans show no improvement but they showed that the cancer had spread into her pituitary gland. My heart broke into a million pieces..I couldn’t believe after 12 rounds of chemotherapy there was nothing to show for it, nothing to make the long sleepless nights of her crying in pain seem a little bit better because she was healing. Very soon after that appointment we were on a plane to our new hospital in Virginia with all new doctors. It was hard transitioning to a new team when we had become so close with the ones in Washington. They diagnosed her. They gave her, her first round of chemotherapy. Her first surgery (port). And many other things that made leaving so hard, we had so much trust with them and felt that a new hospital just wouldn’t understand like they did. When we arrived to our new hospital we were welcomed with open arms. Her new oncologist needed some time to come up with a game plan for Amelia since the vinblastine (chemo) wasn‘t working. At this point Amelia had already been off chemo for a couple weeks and she was starting to show it. Her skin lesions were redeveloping along with an all over body rash. She would barely take bottles and slept all the time. I was ready for a plan I couldn’t take seeing her get any worse. Finally after a few days her doctor had a plan. Amelia was to start a more intense chemotherapy...instead of her normal once a week chemo of 1.1ml, they changed it to 30ml of chemo for five days straight with a three week test period. This is to be repeated 6 times. She is currently on her second cycle of this treatment. The side effects have been intense. During her chemo week she gets very nauseous almost throwing up every bottle and meal. Her skin gets so dry we have to constantly lather her in lotion. Whenever she has a stool after getting chemo it burns her skin causing her to bleed, this is the hardest part because she is in so much pain from the extreme diaper rash. Her hair falls out in chunks every week she is on chemo. She is very fatigue the whole week and takes many naps. Once she is on her three weeks of rest the side effects get better and we have our always smiling little girl. After her third cycle of chemo she will get more sedated scans to see the progress with her chemotherapy. We are hoping for a big change in her scans. Amelia is a fighter and the strongest little girl I know. When she beats this she will have an amazing story to tell.
I will post another update after we get her scan results. Thank you all for all the love and support you give to our family.