Blog update: August 19, 2013

Hey everyone, this is Charlotte (mom) writing this blog for Marcy.

On Thursday, July 11, Marcy had the spinal tap to try to determine why she was having mobility issues with her left side.  As stated in the previous blog, doctors thought she might have an infection or excessive swelling which they could treat with steroids. We received the results of the tap on Monday, July 15, and unfortunately the doctors reported that there were cancer cells in the spinal fluid which meant she could not have the less invasive targeted radiation.  Instead she had to have 15 FULL brain radiation treatments that they started immediately that day Unfortunately, this caused her to lose all her hair again. By Wednesday, July 17, she was experiencing excruciating headaches and loss of mobility on the left side so they put her in the hospital and did an EEG but that was inconclusive. They kept her in the hospital so she could have her daily radiation treatments and then they moved her to a rehab facility right down the street from Piedmont. They wanted her to have PT for her mobility issues plus they transported her to radiation each day. She was a very sick young lady during the 3 weeks of radiation treatments. Any kind of brain activity - TV, computer, phone, talking, movement - caused intense headaches that were relieved only by massages, cold compresses, and rest/sleep. Her dad and I tag teamed 24 hour shifts so someone could be with her 24/7 while she was in the hospital and rehab facility.

Once the radiation treatments were finished, we moved her into our home on
Saturday, August 3 so we can care for her until she improves (her two cats moved in also – watching the cats and our dog interact has been our entertainment).  The first week following radiation still required both the care of my husband and me because she continued to have the headaches and mobility problems.  In fact, she was unable to attend a scheduled doctor appointment on August 7 so thankfully her oncologist held a phone conference with her that day. Physical therapy (PT) and occupational therapy (OT) started at home with just some basic movements which were difficult for her.  

By the second week following radiation, the headaches had decreased in both duration and intensity so her mobility increased too.  However, we’re talking baby steps – walking a few paces with a walker, sitting for 30 minutes at the kitchen table to eat, using a wheelchair to get her to the bathroom to sit on a real toilet. Now we are even able to give her a “shower” too.  Our home does not have a full bath downstairs but it has a large laundry room with a utility sink, so we purchased a small kiddie pool from Wal-Mart.  We hooked up a short hose to the sink spigot and attached a shower head to the hose.  Then we placed her shower chair inside the pool and we created our special shower which is refreshing but exhausting for her.

We are presently entering the third week following radiation and we see improvement daily, but again in baby steps.  We have few headaches, can walk (with the walker) a little farther, and can sit up longer. The recovery time for this type of radiation is about 3 to 4 weeks, so her day consists of resting and sleeping.  She is still unable to watch TV, use the computer, read, talk for long periods, etc.  We expect this to improve as she regains her strength.

She thanks you for all your emails, phone calls, and cards but right now she is physically unable to respond to all of these meaningful, caring gestures. We are amazed and thankful for our neighbors, friends, and her friends who have generously supplied food and assistance on a continuous basis.  We are blessed to have such caring people in our lives. As she regains her strength, we hope she will be able to communicate with everyone.

On August 30, we return to the doctor for an MRI to see the results of the radiation treatments. .We know you want continuous updates, but we won’t have anything until after the MRI.

Thank you so much for your concern,
Charlotte Scott