Brain Day : September 23rd.

After what feels like endless q&a with some of the most brilliant minds I may ever encounter, Chris and I have made a path forward for Sam's treatment.

Left untreated, this tumor will grow and cause irreparable damage. We must take action and start the process of what we are coming to accept will be a lifetime of management and surveillance for this brain weed.

Our first step in this plan will be brain surgery. Or as it has been coined in our house, Brain Day. Sam will have surgery with Dr. Todd Hankinson and his team at CO Childrens on Tuesday, September 23rd. The intent of the surgery is to drain the cystic portions and reduce the size of the tumor. However, in an effort to do the least damage to the pituitary function as possible, parts of the tumor will remain. The intent is to decrease the size, stop the growth and ultimately co-exist with what will remain.

The surgery will be a transsphenoidal surgery which means they will enter the brain through his nose with an endoscope. Pretty incredible conversations with Sam describing how technological advancements and scientists have made this all possible. This type of procedure is much safer than a traditional craniotomy, where they would have to remove a portion of the skull.

We are still learning all the details but because of the transsphenoidal approach, our hospital stay is intended to be relatively short --- with all good outcomes expected it is possible to be less than a week in-patient and may be closer to 3-4 days. We will then get to heal at home with a slow ramp back to full activity around 6 weeks. All in all, sounds pretty approachable all things considered!

Once we are cleared from surgery, we have made the first steps to begin a Phase 2 drug trial. The current intent is to begin an oral med that Sam will take 2x a day for 2 years. The goal here is to stop the tumor from regrowth and protect the pituitary system as long as we can with the drug support. IF the growth continues while on the oral med, we will then need to pivot to additional options. Fingers crossed the trial can start and progress positively without tumor regrowth.

How is Sam?! This is the number one question and also my favorite to answer. Sam is doing great. He is both informed and so very curious. We are talking often about the medical choices, the surgery plan and what is happening day to day. He has incredible commentary and followup questions about all kinds of surgeries and I love to learn more about him just by watching his knowledge grow. At the day to day level he is still mostly asymptomatic. We have noticed he is much quicker to rest and inform us of headaches. We are navigating rest, the heat, and hydration with such a new found watchful eye. Sam is doing a great job informing us when his head is bothering him, what "level" he is at and when him might need some medicine (just otc pain reliever). It's very reassuring that we are all on the same page and he is able to tell us when he is a "2 or a 3" or when we have entered a need for a nap and a dark space. From what we can tell, heat or becoming overheated and long hard play filled days can catch up to him and he crashes a bit. But now that we all know, it's relatively easy communication and we have a plan for when this little weed impacts an afternoon. Socially and emotionally Sam is doing great. He is so excited to have started soccer with his classmates, is loving his teacher and is happy to be back to new books at the school library every week!

What do you need? What an incredible community of friends and neighbors we have. Thank you so much to everyone who has reached out. We are so grateful that at this point in time we don't need for much. Normalcy in our days is huge and starting to feel pretty sacred as we might be in a time of not so normal after surgery. I have promised I will put out the call when we are ready for more or need support but for now know we are doing great and feel so loved.

Countdown Calendar Chris made for Sam's bedroom at his request.