Friends of Amalia

Warning. Long post. Tuesday November 19, Amalia has her day 28 post CAR-T scans (bone marrow aspirate with biopsy and spinal tap). She did amazing, no complications during the procedure. She did have a headache and some nausea going into it. Which seemed to subside afterward. We were getting packed into the car and we got a phone call to come meet the dr back in the office to go over some of the preliminary results. As we nervously walked back in, we knew our fate and what was to come. We sit down with the Drs and those words were said once again “ your daughter has relapsed, yet again, in her CSF..... The CAR-T did not work. Preliminary results of the spinal fluid showed 95% cancer cells. What’s next? Amalia will start intrathecal (into the spinal column) chemotherapy, receiving this weekly until clear, unless she does not respond it will then be moved to twice a week. She will also be receiving total lymph depleting chemo and be admitted for a full 28 day duration, as long as there are no complications. She will receive two rounds of blinatumamab (another chemo/immunotherapy) which she will remain in patient for those two stents as well, so far that’s three months total... with that beings said She will also need total body radiation and with a cranial boost (extra radiation of the brain) due to the fact that it was in her spinal column and so pronounced in there as well. All of this to lead into a Bone Marrow Transplant this means Amalia will be in patient for essentially the next 6 months. With so many relapses unfortunately we’re running out of options. Amalia has been in excruciating pain for over two weeks (starting the around Nov 15) barely eating. Barely drinking and sleeping around the clock. All of this is just too much for her little body to go through. This all is just way too much for our family to endure again and again, as well.... over the last year and change. Jerry (her father) and I have had to take turns as to whose going to work, and who isn’t. Which means our income is cut to less than half depending on the week, our bills our being stacked up, the lenders are non stop calling and threatening because we cannot keep up with all of it while trying to be there for her, and living life with our other two children. We want to also thank everyone for the support, prayers, talks, whatever it has been over the past and whatever in the future we thank you from the bottom of our hearts. God Bless.