Prior to becoming sick my mom worked as a nurse at St. Joseph’s Hospital. A job she really loved and misses terribly.
POEMS has destroyed the nerves in her feet and legs as well as some in her arms. The loss of these nerves has caused weakness in her hands and arms as well as her feet and legs. This disease also has the possibility of destroying one or more of her organs as the disease progresses. On the days the all over fatigue lifts enough for her to be up and around she is forced to use AFO braces and a walker or electric scooter. Her pain level on many days far exceeds the pain scale of 10 and unfortunately due to medication allergies she does not have the ability to take most narcotics available to control pain, therefore leaving her never completely pain free.
During these last long months my mom has had to endure twice monthly Ivig infusions that took over 6 hrs and cost 10,000.00 per infusion. Insurance covered the majority of the cost but she was still left with a large bill at the end of each month. She also went through 6 weeks of radiation treatment for a tumor on her breastbone. Through it all she managed to keep her infectious smile and optimism.
In June of this year she was seen by Dr. Angela Dispenzieri the leading world specialist in POEMS at the Mayo Clinic in Rochester MN. This trip consisted of 5 long days of testing during which it was discovered the tumor on my moms breastbone had a area that lit up on the pet scan showing it had not yet responded to the radiation she had previously received for it. It was decided by Dr. Dispenzieri that she should wait 6 months and come back in December for further evaluation of and possible new treatment for the tumor as well as more treatment options for the POEMS, The treatment options to be discussed are various chemo agents as well as a possible stem cell transplant. The June visit to the Mayo was in excess of $27,000 for outpatient treatment and this upcoming trip in December as well future treatment options are likely to far exceed that amount.
My parents are very proud and private people. Friends and family have asked how to help, and now more than ever they need your help.
We hope by raising funds we can erase a little of the anxieties and concerns they are facing on the road ahead. Thank you in advance for your consideration and any contribution you are able to make.
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