The Harsh Reality of Cancer Recurrence

Many times throughout the cancer journey there are moments where life seems surreal. Usually at diagnosis and then again if there are setbacks. It feels like an alternate reality where nothing makes sense but you are forced to play along. It must be a coping mechanism. The mind is overwhelmed with all the information and feelings so it slows everything down and makes the edges fuzzy until you can catch up. A few weeks ago, I wrote about Scanxiety- the fear and anxiety that a person may feel regarding future imaging studies. I wrote about it because Pey was due for an MRI and my anxiety was creeping up. At her previous MRI, the doctor's found some regrowth. The chemotherapy regimen that was successful in the past was part of the regimen for maintenance therapy. So of course, we thought it would be successful again. Unfortunately, we were wrong. Her tumor grew back with a vengeance.

What can I say? It felt like the rug was pulled from underneath me. She has been doing so well. There were no signs. Then we came to the worst part. The news that all parents wish to never hear. We are no longer working to cure Pey but to extend the time we can have with her. Pey's specific cancer, the odds were never really in our favor. The 5-year survival rate is 5% and less than 1% if there is metastasis. Even with those odds, we were hopeful that we could be part of that percentage. Now we are faced with hard conversations and harder decisions.

With the idea that there is no wrong answer, first and foremost was to decide whether to let the tumor do its thing or put Pey through another surgery to remove as much as possible and buy us a few more months. Both options will have the same conclusion, it becomes more a matter of the timeline. We can't keep giving her chemotherapy and radiation because we will start causing more damage than benefits. She can't keep having brain surgery. Clinical trials are still on the table. However, with her age and limitations, she doesn't qualify for most of them. The ones she does qualify for have no openings and we are now among other waitlist hopefuls. Often these are hard conversations to have with partners and family. Everyone will have their own beliefs on how far to go and quality of life. My husband and I are mostly on the same page but we had to be honest with each other about what we ultimately want. Where he continues to hold on to a possible cure, my focus is on her overall quality of life during this next phase. Neither of us is wrong but we know this is a conversation we will have to come back to eventually.

We asked for a favor before proceeding with surgery. Due to the pandemic and her diagnosis, we never felt safe enough to travel. Now more than ever it felt important to have a family trip. Create the memories and experiences that felt robbed from us. So we were granted two weeks to plan, travel, and return from a trip. Thanks to our family, we were able to take a week-long trip to Hawaii. A place very special to us and an experience we felt Pey deserved.

Hawaii was good. We ate great food, had fun experiences, and had a few firsts. Pey's first time in a pool, on the sand, in the ocean, and importantly first shaved ice. Everything we recorded and photographed. On the surface, it was a great trip. Big sister and Peyton loved the adventure. My husband and I, however, felt such sadness throughout. We knew the reason for this trip so small things would sometimes cause a frown or in my case, tears. There is nothing like catching yourself speaking about future trips with both kids and realizing that one may not be there. It breaks my heart.

I write this from our room in the Pediatric Intensive Care. It has been 3 days since Pey's surgery. She is grumpy and miserable which is not unexpected. However, I do miss her smiles and laughs. She is doing well medically and we hope to be home early next week. The surgery went well. When she has properly healed, she will begin a chemotherapy regimen that will hopefully slow the regrowth of her tumor. We hold out some hope an opening in a clinical trial will happen. Although, it is never a guarantee that it will work. I move freely through the stages of grief daily. I don't know what the next few weeks or months will bring but I stand resolute that I will continue to love this girl with all my heart. I will hold her tightly. I will stay present in every moment. Big sister will have support and learn of the truth when the time comes. So for now I live in this surreal life. This weird state of disbelief but functioning anyway. The fact that for my daughters' sake, I continue our lives as if nothing has changed.