Sarah Perry

Crazy how time flies by. Eight weeks ago, Eric was beginning his recovery from his third craniotomy. He was feeling hopeful, but over those eight weeks, he also experienced a lot of uncertainty. His left hand was not working as it had before, due to neuropathy from the arterial line that was placed in his arm during surgery. We hoped it would rebound and return to normal function. Still today, he is not quite there. This is extremely frustrating, as you can imagine, for someone like Eric, who has spent his entire adult life using his hands to build beautiful homes, gardens, rock walls, and so many special projects. As his new normal continues to shift, Eric is finding great creative pleasure in making simpler things, like candles. The big picture here is the importance of finding purpose. A simpler existence with less stress. Accepting that rest and recovery are not boredom, but something that has given Eric an edge in his fight against this horrible disease. Time to rest. Remove all worry. Simply live. Ada-Grace made our family a sign back when she was in high school that reads, “Live Simply To Simply Live.” It hangs in our dining room, and we look at it every day. It has become a reminder that our new normal is about easy living and loving each other in ways that are pure and without expectations. This past Friday, Eric had a scheduled MRI and a final appointment with his neuro-oncologist, whom, over time, we have come to deeply respect. We have also come to understand the incredible challenges she faces as a doctor who deals with one of the most dangerous diagnoses a person can receive. She is going on maternity leave, so Eric will now have to become acquainted with someone new. As she was leaving the room after going over his MRI results (I'll get to that next), she looked at Eric and said, “I'll see you next year, Eric.” In that moment, we both felt that feeling of hope all over again. You see, not many GBM patients get the opportunity to hear their doctor say, “I'll see you next year.” This disease has a brutal timeline that, for so many, becomes reality. And here we are, 14 months in, with no clear evidence of recurrence, and an MRI showing that Eric is responding very well to his targeted therapy. Overall, the postoperative treatment-related changes are improving, and the subdural hemorrhage is resolving. There is a larger region that looks more like treatment-related injury than active tumor. There remains a smaller nodular area along the surgical margin that needs to be watched closely on subsequent imaging. It was a report we weren't expecting. And while we try our best not to worry about scan days, this time we received the best news we could have hoped for. So, for the next eight weeks, we do what we've done for the last 14 months: We live life simply so we can simply live. I know I said this in my last post, and I'll say it again here: please stop by to see Eric. You do not need to call. Right now, some of our greatest joys are unexpected visitors. Our home is open to you all, and we welcome you. So, until my next update, thank you, friends and family, for continuing to be by our sides, with your messages, your prayers, and your support. We need it. We appreciate it. We receive it. Love wins, every time. Eric, Sarah, Emma, Ada, and Barit

When There Isn’t a Clear Answer I’ve started this update a few times now. I honestly don’t know how to explain where we are right now in this journey and how fitting as the world of Glioblastoma’s is a journey unlike no other. Since Eric’s MRI on August 14th, we have had another piece added to this already complicated puzzle. The MRI showed a subdural hemorrhage. Maybe a post surgical issue or maybe just because….they don't know why. The good news, thankfully, is that over the last couple of weeks, his body has started to heal on its own. It is no longer an active bleed, but more of a hematoma that is healing. But, of course, nothing seems to come without a “but” these days.The healing has caused some swelling, which has brought with it some nagging headaches. He is taking prednisone to help with the swelling, and we are hopeful that as the swelling settles, the headaches will settle down too. And then there is the question of Avastin. Again. We have talked about Avastin before, but now the decision feels different. With a recent bleed in his brain, Avastin feels a little scarier. One of the potential risks is increased bleeding, as well as clotting, and when you are talking about Eric’s brain, those are risks we simply can’t ignore. So once again, we find ourselves in that uncomfortable place of having to make a decision without really knowing what the “right” decision is. What is best for Eric? That question sounds so simple, but it is anything but. The brain team still places Eric in a category where he doesn’t qualify for any of the trials or treatments that might otherwise be options. That is incredibly frustrating, but not, as we are so thankful Eric continues to be without a recurrence. You spend so much time hoping there will be something new, something different, something that might give you an edge, and then you find out that, for one reason or another, you just don’t fit the criteria. So we are left weighing Avastin against continuing to stay the course. Do we try Avastin and take the risks that come with it? Or do we trust what Eric’s body has been doing since February, healing, fighting and adapting, and give it the space to keep doing what it has been doing? I don’t know. And if I’m being completely honest, that scares me. Because when you love someone this much, you want to make the right choice. You want to know that you did everything you possibly could. You don’t want to look back and wonder if you should have tried something else. But you also don’t want to do something simply because you are afraid of not doing enough. That is the part that is so incredibly hard. I think one of the hardest lessons in this journey is realizing that there isn’t always an answer. Sometimes there is no clear path. No doctor can tell you exactly what will happen. No scan can tell you what tomorrow will bring. You just have to make the best decision you can with the information you have and then keep going. We have learned to celebrate the things that once seemed so ordinary, a good day, a good laugh, a meal together, a normal conversation, a moment where cancer isn't the center of everything. Those moments matter so much now. And maybe that is what we keep coming back to. Since February, Eric’s body has continued to fight. It has healed when we weren't sure it would. It has adapted. It has given us reasons to keep believing. Maybe the best thing we can do right now is give him the time and space to keep doing what he has been doing. We will continue to ask the questions, listen to the doctors, think, probably overthink, and ultimately trust that we are doing what we believe is best for Eric. So while we have a week here to ponder the next steps, thank you for continuing to walk this road with us. For checking in. For loving us from near and far. For giving us strength on the days when we don't have quite enough of our own. We feel it & we need it. Love Wins and for us….that is what matters most. With immense gratitude for you all.