Beating the odds in Boston.

Great news, everyone! Victoria’s surgery was a great success! Dr. Curry is confident that he removed what was left of the tumor, leaving only microscopic cells to be targeted by the radiation. He also does not think Victoria will end up needing a spinal fusion, which is fantastic news! Our sweet girl is in the PICU in a LOT of pain and will remain there until her pain is under control. We are truly blessed and humbled beyond belief.

Travis and I both lost our dads when they were still fairly young. My dad died from melanoma in 2017 when he was 71 and Travis’s dad died from Parkinson’s in 2022 at age 74. We truly believe these great men are no longer with us so they could be Victoria’s guardian angels during this fight. They have sent us sign after sign after sign letting us know they are with us, and we’ve felt both of their presences more than ever over the past several months.

The grief of losing someone so dear to you can be extremely hard to reconcile. We’re not privy to God’s plan, so we can only witness it in reverse. Victoria needed the strength and passion of our dads behind her. God knew this all along. Only now do we, ourselves, realize that no matter the treatment options available to either of our dads, it wouldn’t have mattered. They were called home to guide us from above for this specific time in our lives. All of us needed their guidance and strength. Victoria needed their hot-headed, Italian personalities fighting this battle alongside her.

The worst of Victoria’s treatment should hopefully be behind her. It won’t be a fun recovery by any means, but she will be able to return home once she feels well enough and should even be able to go to school until she begins radiation in mid-October, which is another wonderful surprise!

I think what helped me get through this without being in the fetal position 24/7 was that I actually listened to Dr. Huber, Victoria’s ENT, when he asked me to please not look anything up online after he told me her diagnosis. Because I trust him so much, I actually still haven’t looked it up to this day. I know! I’m equally shocked at my level of restraint! Travis, on the other hand, along with every one of our other family members and likely all of you reading this, did look it up. It is so easy to borrow worry by going down an internet rabbit hole. Depending on the day or even our mood at any particular time, we tend to set internal filters and scroll through to find only the articles we want to see or believe to be true. If we feel really down, we only see the articles with bad outcomes to use as a defense mechanism to prepare us for the worst. Conversely, we can also scroll through articles and only click on miracle cases or those with the best possible outcomes. While a positive attitude is ALWAYS helpful, false hope is not.

Dr. Huber told me that EVERY case is different and that because chordomas are so rare, the articles or data I would find would not be up to date or even accurate since I couldn’t plug in data about Victoria’s specific tumor. It was the best (and most difficult) advice I’ve ever taken, but it granted me the ability to not take on unnecessary worry. I didn’t know there were different subtypes of chordoma, some being much worse than others, so I couldn’t dwell on a negative outcome that would never end up coming to fruition in our case! Sometimes, the less we give our brains to think about the better, even though we tend to want to “armor up” with knowledge for battle.

Emotionally, we can only handle so much. Internet spirals and social media deep dives aren’t going to contribute anything positive to our mental well-beings. At times, I’ve felt like a robot on this journey. Sense. Compute. Act. Sense. Compute. Act. The actual job of a robot is to replace human effort, which is desperately needed when going through a traumatic event. I’m not sure when or how I’ll come out of robot mode, but I imagine the magnitude of both the rarity of Victoria’s tumor and the miraculous treatment she has received that will enable her to go on living a full life will wash over me when I least expect it. Then the “wet floor/watch your step” signs will come out as we try to move forward being cautiously optimistic while knowing there may still be some slippery spots ahead.

We will keep you all posted on how V’s recovery is going and when she’s out of the hospital. From the deepest depths of my soul (and I truly mean that), I will never be able to adequately thank you all for your love and support. We still have a long way to go, but we definitely feel like we can take deeper breaths at this point.

Xo,

Paige