{almost} 9 years too soon.
A lot has happened in the almost 9 years since this blog was created, and since our last post in 2021. Looking back on the past 9 years, it has been a real doozy and what feels like multiple lives have been lived since. Since 2014 our family has endured many major life-changing events. Our last life altering event at the end of 2022 happened with our oldest son (Kasen); a freak accident at the skatepark resulting in two skull fractures and multiple brain bleeds. We were fortunate enough to get him into the trauma care at Wolfson's Hospital where they emergently operated within 45 minutes. We were given expectations that he was going to be all good. Kasen graduated from speech therapy this past month and we are hopeful with consistent treatment of physical therapy and occupational therapy, he will be 100% back to normal by the end of 2023. With everything feeling good from January on, our family entered 2023 thinking this was going to be an "easy" year. Easy is a relative term for our family, as nothing we have endured has been "easy".
Reflecting back on why this blog/post started was due to wanting to keep the memories of what our family went through in 2014 and 2015, as well as hopefully be a light and possible resource for those that are going through it. Which we have been, this blog has opened doors not just for our family but for others to find resources they did not know existed. This past week, we reflected on our journey, where we started to where we are now, and we are so thankful we have made it this far. Yet the reflection was done for other selfish reasons besides gratitude. Last week our family received another one of those life-changing phone calls regarding Trey's health;
"We've found a mass on your brainstem."
This is now our fourth, and final run. To be honest, it feels as heavy as it did the first time we were sitting in the hospital downtown. It does not get easier with each diagnosis. Within hours of the phone call, we were in our surgeon's office coming up with a plan. In 2020 when we finished our radiation we were told from the beginning that this was the last time Trey's body could handle radiation. Knowing this, and trusting in our doctors we pursued. The radiation in 2020 worked, and both the brain and spine tumors disappeared. As of last July, we were moved to yearly scans. What a difference a year makes; from last July with no tumor, to this July showing a sizable mass.
We are now scheduled for our last brain surgery on August 14th. Surgery and treatment since our 2014 endeavor have not changed much, it will still be 7 + hours and all the risks are still the same. The only difference this time is we can only do the removal, radiation is no longer an option. Last time, we had no choice, it happened so fast that there was no thought on what this meant for us, our only option was to operate. This time our only option is still to operate, but with waiting, the anticipation and the stress of not trying to think ahead is hard. Same as last time we will not know what is to come until after Trey wakes from surgery and what our future holds. Recovery last time was almost 9 months; 9 months of relearning basic skills, 9 months of occupational therapy, 9 months of physical therapy, and 9 months of emotional breakdowns. Our life is different now, we both have jobs and two kids, and in general, more responsibilities, and less flexibility. The thought of trying to pause life, and all that comes with it, for 9 months is overwhelming, to say the least.
On the other side of that coin, is having the experience and knowledge of what is needed to get ourselves through this. Knowing what is to come as well as the season of life we are in, we will have to count more on our community than ever before. As of now only close friends and immediate family have known what is coming our way, but we know that we need all the love and support we can get during this time. For those that would like to help, we are open to it. For those who want to pray, we are open to it. For those who want to send help, we are open to it. If anyone wants to come sage the house and bring me some wine or a margarita, open to it. (Terrible humor, but still open to it.)
Cancer never comes at a good time, but it doesn't feel like this is the worst timing. We have seen some glimmers in this for our family. We are learning to lean into the pause vs. denying/resisting. Our family is trying to stay on the positive side of things, we are trusting that we are in the best of care. Not only are we in the best of care at Mayo, but our community since 2014 has continued to amaze us. With our community we have a feeling of being embraced and know any of our cries for help will be met with a warm hug and an icepack. We are focusing on staying present vs. looking further in the future; all of it is unknown and we can worry about it when it gets here. This is our last shot and we are catching this early enough that our surgeon and team feel good about the removal. We know we are buying time, but it's worth it.
What we ask during this time is for you to stay present with us, pray for our family, and love us unconditionally as we battle cancer for the 4th time.
For those that would like to help: We have a go fund me to help with buying time and paying for medical expenses.
We also have a meal train started.
If you would like to help elsewhere, such as yard work, rides to doctors appointments, laundry, emotional support, or just would like to give us a hug, PLEASE connect with us.