Its been 10 and a half months since we found out Audrey’s cancer had come back. They said we most likely wouldn’t make it 6 months and almost certainty not a year. Looks like they were wrong on the first part but not as much the second. Audrey was doing well in her trial in Los Angeles and actually starting to look better. Then she took a quick turn for the worse. She started complaining of being dizzy and getting headaches on the 25th of July. I took her to the ER on July 30th because I couldn’t get her headaches under control with what I had. That next morning at 5AM she had her first focal seizure. I called Melissa and told her to get to the hospital quick. She got there at about 6:30 and Audrey was still having the seizure and her entire right side of her face had gone limp. Her right eye was completely dilated but she was being so goofy and wanting to play. at 6:50 she went into a full brain seizure which caused her to stop breathing. They called a code blue at 7AM. They got her body through but her brain never fully recovered. She was in and out of seizure the next week while they tried to identify what was going on. They were never able to 100% say what caused it but it was either the Phase 1 trial drug that gave her cerebral edema or the cancer in her brain irritating it enough to cause the seizures. Either way it had done its damage and left her almost completely unresponsive. On the 6th of August she had a long seizure that took a lot of rescue drugs to stop. Once it stopped her face twitched for another 14 hours and they told us she would pass that day or the next. At that point we chose to give her CBD cannabis oil and her seizure stopped within a minute of getting the oil in her mouth. She finally relaxed and went to sleep for 16 hours or so. We decided in that moment that we wanted her to fix this journey at home. We had some friends identify some air ambulance companies and I went to work getting it setup and getting the medical team on board. 12 hours after telling her team we were leaving Melissa and the kids were home. I still had to back the van in the house we were renting and drive home. I got home safe and sound the next morning at 5AM. As the doctors had told us it would be soon we got her settled in and expected it to be quick. Well it seems that they forgot to tell Audrey. She rallied as she always does and the steroids she was on for the brain swelling left her with an insatiable hunger. She but on 5.7 pounds in 2 weeks. We went and saw her oncologist at Phoenix Children to just get an idea of where we were in the final days. He said her blood counts and chemistry looked great and still didn’t understand why she was unresponisive. It seems to stump everyone. She went on this way for about 4 weeks and on Labor day she had another severe seizure that has lead to her being completely unresponsive. She no longer says anything and can’t eat any more. She hasn’t had anything to eat in almost 2 weeks and is slowly fading. We keep her comfortable and do our best to push off the seizures at any sign with Ativan and Morphine which a few extra rescue meds when needed with the entire focus on being comfortable and pain free as she slips into the arms of Jesus.
I always knew the end would be the hardest part but I just never expected the final days of being incapacitated would be so hard. Watching her slowly slip away and thinking each time her heart rate goes up or down it’s time is just tearing us up. The switch from fighting to just supporting has been so hard. Now that we know there is nothing we can do and she no longer has any quality of life left we beg Jesus to come get her yet he doesn’t. We kind of think that Audrey can see the tunnel of light with God calling on the other side and she is just raising her hand and saying I will be there when I am ready and she isn’t ready.
September has been designated as pediatric cancer awareness month to raise awareness of how little there is in funding and research that is dedicated to our kids. I created a small video to try and help raise this awareness. I am including the Facebook link and YouTube. Please share as it’s our small way of helping.
Thanks for continuing to follow our journey and love your babies every moment of every day as you don’t know when that wont be an option any more and it comes quick.
Facebook link if you are on Facebook is https://www.facebook.com/ira.hughes.1/posts/1694337613911350
And if not you can check it out on YouTube and some other cool videos of Audrey. https://www.youtube.com/watch?v=LgNPieiMSOI&t=14s