Hello. It’s been a few years. Life. It’s been busy. Joel is a full time stay at home dad. We had twins and the spice they brought to our life with our now teenage princess has been what we needed to sustain our journey onward. This is my last post on here- I did feel the need to attempt to close a bit of this loop on the internet. Again no idea why.. other than a splash of hope to the visitors who search late at night for a 11+ year, grade 3 glioma survivor.
I recently wrote this on a post on fb to my friends and family.
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4-4-23
It’s been 11 years since Joel’s major surgery at UCSF. 7 years since tumor advancement and progression. I would be lying if I didn’t think of this date as bitter sweet. It’s changed our life. Some for the good as it also has a lot of good surrounding it. So many highs and lows have been a part of these days.
I can remember vividly sitting in the chairs in the surgery waiting room for hours on end. My dad was often close by- we sat silently with so many emotions. 3-5 hours turned into over 12 hours+ each hour stretching my strength and patience. All to end with finally seeing him not waking well in the icu. The future was groggy and so terrifying to imagine. The days that followed scary yet memorable.
Followed by 4 years on (4-4) later learning his tumor had started growing with more aggression. The drive home after having driven to Seattle that same day was horrid. (I drove around 14hrs in a 22 hour period) It was raining heavily, and with tears streaming I white knuckled the wheel to get home my babies. His memory and the weight of the conversation with the doctor, was replayed over and over.. he didn’t want to believe it... and frankly neither did I. Radiation, chemo, multiple appointments, all brought a new level of chaos to our young family.
The struggle of managing to fight for his life, while continuing our life, was nothing short of fatiguing. I was working, with young kids (twins were not even 2), coordinating his care, fighting insurance companies and surviving.
Today our life is not what we imagined when we married. Some days have more of the lows than the highs. I don’t regret the energy, money and tears spent.
Joel is here. Our kids adore him. He loves to spend time with his kids and knows more about them than I do at times, at least their interests. He has patience for classmate birthday parties (not my jam) and alarms for pickups. I am so glad our kiddos have him and so relieved I still have these parts of him.
There are parts of him that have changed. Brain surgery does that. Significantly. We wouldn’t deny that. There are parts of me that have changed too. The pandemic in healthcare has been exceedingly challenging for me as well. All in all— This journey has been wild, and isn’t over.
I am not online the same way as much. And honestly, I share less and less- but my gratitude for this season remains. My parents have helped exponentially with strength, and a pillar for our kids.
The support and love from this part of our life has sustained us in those rough moments. So for that, thank you.
May you also continue forward day by day- or even breath to breath.
