Jul 23, 2021 Latest post:
Sep 21, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support. All updates are written and posted by Sue’s daughter Julie (so Sue may be referred to as Mom) Thank you for visiting.
This has been a long journey and many of you have been through it with us at various points in this process. We want to thank all of you for all the love and support shown to mom and our family over the years.
I’m never sure how far back I should go to start our story. I’ll try to make it brief. Although Sue has had abnormal blood counts since childhood it wasn’t until March of 2017 that things changed significantly and she was ‘officially’ diagnosed with a bone marrow cancer called MDS or myelodysplastic syndrome. This is a bone marrow disorder where her body doesn’t make healthy cells and they are unable to develop into the white blood cells, red blood cells, and platelets that her body needs. Causing critically low blood counts. The only cure for this disorder would have been a bone marrow transplant which Sue was not qualified for due to her age and health at the time of diagnosis. She started chemo treatments shortly after and managed them like a champ! She went to the cancer center several times a week for blood checks and would get chemo 5 days in a row once a month with many blood transfusions in between. She had a few bumps in the road and minor changes to her treatments over the next 3 years and we fast forward to March of 2020. (Julie had already moved in to help mom and dad back in October of 2019) Between March and May of 2020 Sue was hospitalized twice. The first was a septic infection, had port removed, IV antibiotics at home for a couple weeks then new port put back in. And her first chemo treatment after new port she was hospitalized the second time with a neutropenic fever. Needless to say 2 hospitalizations in such a short time took its toll. By that time it was also apparent that her memory had declined significantly and her body was not tolerating her treatments anymore. We made a difficult decision to stop her chemo treatments, initiated Sue’s POA (power of attorney) and made her a DNR (do not resuscitate) status. It was agreed at that time she would continue to get her blood checked weekly and they would continue with supportive care and treat her low hemoglobin with blood transfusions as needed.
Since then Sue continued to go to the cancer center every Monday for blood checks and would go back on Tuesdays for her blood transfusions, which were needed almost weekly. Every so often her hemoglobin was over 8 and she was able to skip a transfusion that week. She has been a trooper and rarely complains about anything. Since January there has been a slow decline not necessarily noticeable in the moment to the day to day eye, but looking back is easier to identify the change. We just kept adapting and doing what was necessary to keep Sue moving and functioning. Most recently Sue has had some more significant declines in her physical abilities and the past few weeks have been increasingly difficult to manage her care due to her weakness and dementia. Dave is no longer able to care for her alone while Julie is at work and it has become apparent that a higher level of care was going to be necessary. After discussing Sue’s condition with the doctors and care team at the cancer center and discussions between family members and Sue’s wishes to not be placed in a nursing home we have made the difficult decision in Sue’s best interest to stop the blood transfusions and supportive care the cancer center was providing. Today 7/22/21, we placed Sue under the care of hospice. Per her wishes, she will remain at home surrounded by her family who will provide care along side hospice until God calls her home. Julie will be taking FMLA leave from work so she can be home to help care for mom during these next few weeks, and will try to keep everyone updated to moms status via this site. We thank you all ahead of time for all your caring words and prayers you may extend to us.
The Cancer center is like Sue’s second home and staff are like her extended family as she has been there several times every week for the last 4+ years. We couldn’t have done any of this without their dedication to treating their patients and all their individualized care they have given to mom as her needs changed over the years. We extend a BIG THANK YOU to everyone who made moms time there special.