I am so happy to update you with news that Brenda is doing very well right now! She continues to have communication difficulties and has little use of her right arm and leg, but is incredibly present in conversation and eager to engage with the world.

In March, an MRI showed that her tumor had progressed, necessitating that she stop the most recent clinical trial. While that was certainly tough news, the drug also came with a number of side effects that have since eased. Brenda next began an FDA-approved drug designed to stop new blood vessels from forming, which tumors often need to grow. Last week, after 6 weeks on the treatment, her MRI showed the tumor is stable and hasn't progressed further. We are all so happy about this news and Brenda will continue on this treatment via an infusion every few weeks.

 

As I read these notes to Brenda that I wanted to share with you all, we reflected on the challenges and frustration she's had and how that's changed over time. Just a few months ago, Brenda was in a lot of pain and her verbal communication was mostly limited to "Yucky", "I love you", and "Rich". Fast forward to the Spring and we are having all sorts of conversations together. One of Brenda's enduring difficulties has been word-finding. She knows exactly what she wants to say and has strong convictions, but can't always tell us. This leads to a lot of guessing games, laughter, and tears. I am always amazed that when there are sentiments she wants to convey, she finds a way to get it across. This is mostly love, gratitude, and joy. Brenda's joy for living is truly contagious and is incredibly steadfast. You all know that Brenda has always had many goals and pursues them all at once. One of these goals recently has been to move more. As I mentioned before, the use of her right side is limited, but she is constantly working to improve. If she's alone for a minute she will be doing leg lifts in her chair and it really is paying off. She's made small improvements in her mobility that many of us thought would never return. Although the tumor and/or side effects have eventually overcome each of the clinical trial drugs Brenda has been on, most of them have slowed the tumor's growth and given her more time with all of us. We are incredibly grateful for all of the healthcare workers and researchers that have enabled Brenda to continue on this journey. I will also add that Brenda's will to live has also had a profound impact on her medical journey. 

 

We have a wonderful concert of caregivers, friends, and family that are allowing us to focus on living and spending time together. We are truly blessed and can't thank you all enough.

Brenda is currently having 2 different books read to her and is thoroughly enjoying both: Taking Up Space by CVS Health's Karen Lynch and Notes from a Young Black Chef by Kwame Onwuachi. We also recently got a new wheelchair ramp and are all excited about how much easier it is to get outside and enjoy the sun.

 

Wishing you all a wonderful May!

Arms Locked,

The Lord Family