And so it begins -

Six weeks of recovery and caution has flown by and this week we returned to CO Children's for both our post op checkup and Phase 2 medical trial approval.

We're so excited to share that Sam passed MANY post op checks with flying colors and has all restrictions lifted. We're back to sports, pogo-ing and even using a straw! More important than lifting restrictions, the tumor has remained deflated and did not gain back any cystic fluid. The drain has worked and at this point in time seems to continue to draining any post op fluid. All such great news!

I'll note that we learned from the surgeon that at the time of his surgery -- Sam was patient number TWO to have undergone the transsphenoidal dissolvable stent procedure. Wow! We knew we were in innovative territory of "low numbers" and did freely choose this option for his treatments but this exact number surprised us! Excited to think other cranio patients may benefit from success we got to first experience for years to come.

A frequent MRI will continue to be part of Sam's treatment plan and I'm happy to report he underwent his first AWAKE MRI. This was a huge feat as it eliminated the need for sedation. Skipping the sedation step is a relief for him (doesn't like 'waking up') and a major efficiency factor in appointments. Big shoutout to the team at CO Children's. They set Sam up for great success in prep, language and a movie but also allowed both Chris and I to be in the room. Thirty minutes of laying still (and remaining calm) is a long time no matter your age but it really could have gone either way at 7 years old!

The optic nerve pressure Sam had experienced with the inflated tumor has been alleviated. The thinning that did occur will always be present but at this point in time is not getting any worse.

With the green lights from neurosurgery, ophthalmology and endocrinology we were able to officially enroll and begin Sam on a Phase 2 oral medication trial. He will take 4 pills a day to hopefully prevent the regrowth or enlargement of the tumor. The full trial length is two years and if at completion his body is still responding he will be able to continue the med support to maintain consistency.

Trial protocols will require monthly visits to CO. A lifestyle adjustment and sacrifice but honestly feels much more manageable than the unknowns and difficulties presented to us with other treatment options. It will be a gift to say in two years we completed the trial and prevented regrowth with a pill regime when compared to other much more invasive trajectories. Side effects are always part of the equation and we hope to manage them well. The biggest concern is impacts to his skin -- rashes, eczema etc. As a Phase 2 trial these are known issues and the medical teams has support plans in place for what we should encounter.

Lastly I want to close in mentioning it was our first stay with the Denver Ronald McDonald House. What an impact this organization has across the country. We look forward to our future visits with them.