It is impossible to find the words to describe the pain Jeff and I feel as we enter this phase with Gianna. It is a trauma beyond the deepest darkest pain that will be with us for the rest of our lives. I cope by keeping it in a box. I underplay the severity. I lie to myself. It’s how I make it through each day. Yet we know it also flows through Eric, Troy and Alexa. The grief we watch them process is exponential pain. It was Troy’s 14th birthday last week. We celebrated by going out for dinner - which was a major outing for us. I was standing outside the car, watching Jeff help Gianna from the passenger seat of the car she used to drive, into her wheelchair. My vibrant child, the one our family has orbited around for nearly her whole life - fights still for her life as this cancer and its treatments continue to ravage her brain. I feel so much anger. I know it’s an expected part of grief but I also want to push past it and revel in the joy she has given us for 17 years. It’s so unfair. Why Gianna? We are home, on hospice care. Even though we understand logically this next phase, the emotions of it are overwhelming. Every headache, every pain, every little thing. It is a freefall of terror - absolute terror of what the future looks like for our family. The terror of this experience. I still pray for a miracle, but my ask is angry. I am on edge in every moment. I pray for peace in my heart, to find gratitude in my anger, and most importantly, strength to support my family through this horrific nightmare. Thank you for keeping Gianna in your heart - please continue to come visit - hold her hand - tell her stories - make her laugh - share memories - tell her you love her and how much she means to you. The outpouring of love in the notes to her that we’ve read from her friends has been incredible. She has touched and inspired so many with her love - stories of things I had no idea that she had done that were so kind and giving. She is so special. She is SO LOVED.
So many times, mostly while lying in bed in the middle of the night, I have half written, in my head, a complete fabrication of an update to share on Gianna. They were aspirational, telling a story of a phenomenal recovery, describing details of miraculous progress that left her medical team in disbelief. I’m always trying to manifest a miracle. I would then often fall into a dream where I was fighting - always physically - with someone - often much larger, more powerful person or beast who was unidentifiable or faceless. Have you ever had a dream where you had to fight or flight? One that you remember, vividly, and it stays with you a bit after you wake? Did you fight or did you flee? I’ve had those dreams every now and then throughout my life but from what I recall I’ve mostly fled or escaped or somehow created safety for myself. Over the past months these dreams of fighting have been quite frequent and intense. However, the difference now is that I don’t ever turn away. I don’t hide. I stop, I face and I fight. Sometimes with total rage. I usually wake exhausted but without knowing if I was victorious. Dreams in some cultures hold significant meaning. I don’t think it’s hard to diagnose what I have going on in my dreams given what I currently hold in my life. But last night was different dream. There was tossing and turning and thinking and anticipating and scenario planning. But there was not a fight. There was peace. In fact, I think I slightly exhaled for the first time in many months.
Gianna was discharged from hospice yesterday. Let me write that once more. GIANNA WAS DISCHARGED FROM HOSPICE.
To properly tell this story, we have to turn back the clock. November and December feel like a horrific blur. Gianna, it seemed, was not doing well. We were told perhaps 5-6 days. Let that sink in a minute. Your child, a person you love more than life itself, might be departing - leaving you forever. For those who know me - you understand that I can compartmentalize better than what I would say 90% of all people. I did with that horrifying statement what I do best - threw it in a box and talked about it as if I was discussing someone’s 18-year-old cat. I didn’t process it. I disassociated. I coped. I just kept going. Our whole family just kept going. So did Gianna - right past the 5 days. Then we started to see some interesting progress. We removed her oxygen. We refused all hospice meds (don’t get me started). She was awake a little more (she was sleeping most of the day and night). Her right arm started to work. Her right leg moved. HER APHASIA RESOLVED. (Which was insane - we could actually communicate with her!!). Last week, she began to walk with a walker. She’s balancing while standing on her own. She’s eating ON HER OWN. Gianna has never flunked out of anything in her life - but she has successfully flunked out of hospice! I suppose there is a first time for everything - and we celebrate this one wholeheartedly!
Our hospice nurse meets with Gianna’s medical team regularly. Each time our nurse would come she was baffled by Gianna’s progress - as she was getting better with each visit. She took photos and videos and sent them to Gianna’s medical team. The bottom line is there is no medical explanation for how or why this is happening. We 100% believe we are witnessing a miracle from God. We don’t know what He has planned for our Gianna, but for today, the plan is for her to continue to live, to grow, and to fight. We understand that Gianna’s mid-December MRI showed progression, perhaps, of the tumor. But perhaps it was read incorrectly. Her recovery is not congruent with tumor progression.
I am also so proud to share that Gianna was accepted to TCU and to Baylor - the only 2 colleges she applied to - AND - has already received her high school diploma! She had enough credits to officially graduate! (I’m now happy that Gianna never listened to me about making her academic schedule a tad less rigorous. Who needs to take Spanish AND Latin???). She WILL GO TO TCU. They are ready for her and have been incredible supporters together with her high school. I could not ask for a more caring, supportive, loving team for Gianna. It’s beyond what I could ever hope for…
We are not out of the woods by any stretch of the imagination. The rollercoaster of emotion I’m certain will ignite many more dreams of fighting - but we are starting off 2026 with a big fat tally mark in the W column. Full stop. We have UCSF on Feb 17.
To Gianna’s warrior army: please keep praying, keep sending the positive thoughts and intentions. Continue visiting, including her…. We are witnesses to a miracle today. Our specific prayer is for Gianna to continue on a path of healing and wellness, to not be frustrated with what she sees as slow progress, and mostly, that her left eye heals and effectively works together with her right eye to resolve double vision issues, eliminating the need to wear a patch. Her prayer is that her face returns to ‘normal’ - Gianna is still a teenager - and she hates not looking like herself. She absolutely hates it. If you have time for an extra positive thought or prayer, I know she’d appreciate it.
Continued gratitude for all the support for our family and help to Jeff when I’m traveling for work.
Gianna was discharged from hospice yesterday. Let me write that once more. GIANNA WAS DISCHARGED FROM HOSPICE.
To properly tell this story, we have to turn back the clock. November and December feel like a horrific blur. Gianna, it seemed, was not doing well. We were told perhaps 5-6 days. Let that sink in a minute. Your child, a person you love more than life itself, might be departing - leaving you forever. For those who know me - you understand that I can compartmentalize better than what I would say 90% of all people. I did with that horrifying statement what I do best - threw it in a box and talked about it as if I was discussing someone’s 18-year-old cat. I didn’t process it. I disassociated. I coped. I just kept going. Our whole family just kept going. So did Gianna - right past the 5 days. Then we started to see some interesting progress. We removed her oxygen. We refused all hospice meds (don’t get me started). She was awake a little more (she was sleeping most of the day and night). Her right arm started to work. Her right leg moved. HER APHASIA RESOLVED. (Which was insane - we could actually communicate with her!!). Last week, she began to walk with a walker. She’s balancing while standing on her own. She’s eating ON HER OWN. Gianna has never flunked out of anything in her life - but she has successfully flunked out of hospice! I suppose there is a first time for everything - and we celebrate this one wholeheartedly!
Our hospice nurse meets with Gianna’s medical team regularly. Each time our nurse would come she was baffled by Gianna’s progress - as she was getting better with each visit. She took photos and videos and sent them to Gianna’s medical team. The bottom line is there is no medical explanation for how or why this is happening. We 100% believe we are witnessing a miracle from God. We don’t know what He has planned for our Gianna, but for today, the plan is for her to continue to live, to grow, and to fight. We understand that Gianna’s mid-December MRI showed progression, perhaps, of the tumor. But perhaps it was read incorrectly. Her recovery is not congruent with tumor progression.
I am also so proud to share that Gianna was accepted to TCU and to Baylor - the only 2 colleges she applied to - AND - has already received her high school diploma! She had enough credits to officially graduate! (I’m now happy that Gianna never listened to me about making her academic schedule a tad less rigorous. Who needs to take Spanish AND Latin???). She WILL GO TO TCU. They are ready for her and have been incredible supporters together with her high school. I could not ask for a more caring, supportive, loving team for Gianna. It’s beyond what I could ever hope for…
We are not out of the woods by any stretch of the imagination. The rollercoaster of emotion I’m certain will ignite many more dreams of fighting - but we are starting off 2026 with a big fat tally mark in the W column. Full stop. We have UCSF on Feb 17.
To Gianna’s warrior army: please keep praying, keep sending the positive thoughts and intentions. Continue visiting, including her…. We are witnesses to a miracle today. Our specific prayer is for Gianna to continue on a path of healing and wellness, to not be frustrated with what she sees as slow progress, and mostly, that her left eye heals and effectively works together with her right eye to resolve double vision issues, eliminating the need to wear a patch. Her prayer is that her face returns to ‘normal’ - Gianna is still a teenager - and she hates not looking like herself. She absolutely hates it. If you have time for an extra positive thought or prayer, I know she’d appreciate it.
Continued gratitude for all the support for our family and help to Jeff when I’m traveling for work.
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