[Diane Rasic]

I’m not sure if this helps anyone but here is an update on my mom. I posted detailed information on her MDS on Dec. 26 if you would like to see the details of her illness. My mom passed away March 21, 2019. After her first round of Dacogen in December she was hospitalized with critically low blood counts they tried iVig and it seemed to stabilize her counts temporarily. She decided in January to try another round of Dacogen. She only tolerated 3 days and landed back in the ER in February and again March. Her body simply never recovered. Her blood counts remained dangerously low. Our mom was completely dependent on transfusions at that point. She had 6 transfusions in 24 hours and her levels barely rose. It was so so heartbreaking. She refused to go on hospice but eventually came to terms. There was nothing left to be done. She was sent home on a Friday with 24 hour hospice care. They insisted she be transported home in an ambulance with a nurse because they did not believe she would survive the 10 min trip home. Hospice was rough at first and then after several bad nights and phone calls from my sisters they sent their best. Our mom held on until Thursday March 21. She was alert throughout the weekend until Wednesday morning and then non communicative. They increased or morphine and kept her comfortable in that final week. I think once transfusions no longer work you know the end is near. There is time but days, not weeks. Hospice care in the end went above and beyond. I know some only come weekly but due to her instability our mom had the gift of 24 hospice care in her home from Friday through her final breath on Thursday afternoon. That was a blessing. Be sure to reach out and use hospice when the time comes. No one has to go through this terrible disease alone. My brothers and sisters were with our mom that entire week. Sadly I was ill and diagnosed with kidney cancer on the day my mother died. A cruel twist of fate…

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