Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
My name is Alison Issen, and Lynn and Marna have been friends for more than 20 years. Marna asked me to help her develop a system to keep friends and loved ones informed about Lynn's condition, and to help organize help and support.
Earlier this week, after a couple of weeks of illness at home, Lynn was rushed to Florida Hospital Altamonte, where it was found she was severely neutropenic (low white blood cells) and thrombocytopenic (low platelets), with both counts around the zero mark. Even after platelet infusions this week, her counts have not gone higher than 23,000 (normal platelets 150-450,0000). After a bone marrow biopsy, she has been given diagnoses of MDS, Myelodyplastic Syndrome, and Myelofibrosis. "Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow are damaged. This damage leads to low numbers of one or more type of blood cells. MDS is considered a type of cancer, and is often a precursor to leukemia." Part of usual treatment would be strong chemotherapy prior to a bone marrow transplant. Unfortunately, the other diagnosis Lynn has received is preventing her from receiving usual treatment at this point. "Researchers believe that myelofibrosis is caused by abnormal stem cells (
http://www.aamds.org/glossary/terms#stem_cells) in the bone marrow (
http://www.aamds.org/glossary/terms#bone_marrow). These abnormal cells grow quickly and cause scaring in the bone marrow and chronic inflammation. If the marrow is scarred, it can’t produce blood cells correctly or perform its normal functions. " Marna's understanding is that a bone marrow transplant could not be considered if the myelofibrosis might affect the new marrow. As of right now, the doctors do not know the cause of the myelofibrosis, but have been hitting her with antibiotics, antivirals and antifungals this week in case it is caused by an infection. Unfortunately, these meds have not been easy for Lynn to tolerate. So, at this point, there is still a work-up going on to see if the myelofibrosis can be controlled so that more standard treatment of the MDS can proceed.
While Lynn remains in the hospital, Room 3927, Marna has some needs you may be able to help with. They ask that no flowers be brought or sent due to Lynn's low white cell count. She is looking for folks who could come to hospital and stay with Lynn, while Marna goes home briefly and then sees clients. Someone(s) between 9 or 10 until 4 would be great. One day a week will be a little later to accommodate after work patients. Gentle massage skills welcome if you have 'em. No more than 1 visitor at a time preferred. Lynn is weak and has very low energy. She may need help getting out of bed and maneuvering IV pole into the bathroom, and the reverse when she comes back out. She has very dry mouth, so may request various fluids which are available in room. Lynn is not desiring much conversation or stimulation, she is not wanting any music or TV at this point. In addition, bringing Marna some home-cooked or healthy gluten-free meals would be very much appreciated. There is a microwave on the floor. She feels like the hospital food is not helping her to stay well.
If you are able, please go to the Ways to Help section to sign up for a shift or to bring a meal. You can also send messages of support to Lynn and Marna through this site. Thank you for helping to hold our friends in your hearts and continue to send healing energy their way.
