08/17/2026
Thanks for praying for our granddaughter Ava, who was diagnosed with an incurable brain tumor two years ago.
From our daughter Lucy.: A Balance of Beauty and Pain
We would first like to start with the introduction of our newest child and miracle, Simon Patrick Duchesne. He was born on August 10, and has been an absolute joy to us all. He brings such a sense of hope and promise for the future.
Here is an update on our Ava:
In the last two weeks, Ava has unfortunately declined significantly in almost all of her functions. Her energy is at an all time low. She can no longer speak, so in order for us to understand what she needs we usually just have to resort to asking yes or no questions until we figure out what she needs. Watching the anguish on her face when not able to express herself is something I never imagined I would witness. She has lost nearly all upper body and neck control, so sitting her upright is becoming very difficult. She eats most of her meals on the couch now. Speaking of eating, it is hard for her to chew, so we are now feeding mostly soft food to her and having to be very conscious of the size of bites given to her. Even a few weeks ago, she was starting to use a pencil in her left hand again, but now she cannot even lift her left hand or move her fingers. As you can imagine, her mood is greatly affected by all of this. It takes a lot of effort to make her smile and keep her content. The emotional and physical toil can feel unbearable at times.
We had a conversation with her doctor yesterday and discussed the possible causes of this decline. The drug that Ava is on can cause extreme fatigue and with what Ava has gone through, fatigue can have a significant effect on her functions. She may also be experiencing radiation fatigue which has happened in the past. Of course the greatest concern is that the tumor has grown and we are seeing serious progression.
Our original plan was to do an MRI in October, but due to this rapid and severe decline, we are now planning to do an MRI on Tuesday, August 18th, to see what is going on.
It all seems a bit too much on top of welcoming a beautiful new life into our family. We are truly living in a delicate balance of pain and beauty.
Please keep praying for us and for Ava’s MRI to surprise us and show no growth. We have been surprised in the past and hope this is one of those moments.
Pray for increased patience and strength, for our other children’s ability to adapt, for greater trust in God’s plan, for total surrender to His will for our lives. For a miracle.
May we all be courageous in taking up our cross. If there is one thing we have learned, it is that we can do ALL things through Christ who strengthens us.
St. Simon of Cyrene, pray for us.
