Amanda R

Former LifeList Warriors

In October of 2017, Amanda started having pain in her left arm that increased over several weeks. After several scans, tests, and severe pain, a neurologist finally diagnosed her with Parsonage Turner syndrome, a rare neurological condition that can take years to resolve. However, even with meds, the pain did not decrease but instead increased.

Then, on New Year’s Eve, Amanda woke up with tingling in her left fingers and went to the emergency room, where she was admitted and by the next morning found she could not walk. After several days undergoing more scans and testing, she was eventually diagnosed with Multiple Myeloma. At age 31, Amanda is extremely young for this diagnosis so the doctors in Cincinnati recommended hematology specialists at Mayo Clinic. Before leaving Cincinnati, she had a few radiation treatments on her spine which helped tremendously to get some feeling back in her legs and feet, as well as receiving an initial dose of chemo. The multiple myeloma had also attacked her left humerus bone causing a break, so she had surgery to place a titanium rod in her arm to stabilize it until the bone could start to grow back.

On January 7, 2018 Amanda flew on a lear jet with a small medical team and an awesome friend out to Phoenix, Arizona and arrived at Mayo Clinic. There she met her hematology team and learned the treatment plan over the next two years, including chemo, radiation, and a stem cell transplant. Due to the loss of function in her legs and left arm, she also needed a rehab program with both physical and occupational therapy. Soon, Amanda was able to transfer to the rehab unit at Mayo and start intense daily therapy. Her big goals were to improve her leg strength and learn to walk again.

During this whirlwind few months, Amanda had an amazing support system of family and friends. She even made friends with the mail delivery guy at Mayo Clinic because of how many care packages and cards she received! Her husband quickly jumped in to being a caretaker and all that entailed, including listening during her tough days and helping her to feel “normal” when she felt anything but. The rehab team even arranged for several “outings” when she was going stir crazy inside the hospital walls. Finding fun restaurants was typically a priority on these outings! With the guidance of her incredible therapy team, Amanda has made great strides and after 8 weeks she is walking with the assistance of a walker, though using a wheelchair when out of the house, and she is able to use her left hand and arm more functionally in day to day life.

Amanda knows she has a long road ahead of her, but seeing the improvement in rehab has given her renewed hope. Now she is adjusting to life outside the hospital and preparing to go home to Cincinnati with her husband once their house is ready, as they are in the process of renovating to accommodate her new normal…for now.

Amanda’s Life List:

  1. Spa day/hotel/dinner/transportation for friends and I who have tickets to see Justin Timberlake in Columbus on May 7
  2. 1 year anniversary dinner for my husband and I (The Precinct or Carlo and Johnny’s, Soto) with hair and makeup for me 🙂 On or around May 20
  3. Dog door or another way to help me more independently take care of our two dogs after transplant (probably after September)
  4. Tickets to a broadway show in Cincinnati (Hamilton or other)
  5. Behind-the-scenes at Sprinkles cupcake bakery
  6. Lilly Pulitzer shopping day at the origin of Lilly in Palm Beach