What a busy week it's been. We know everyone has been waiting for updates. 

Monday evening, we returned back to Rochester for follow up appointments and further testing. 

Tuesday started off with her typical MRI, which was accomplished like a champ. We were all thrilled the dreaded "nose test" (covid screening) was no longer a prerequisite for her MRI. Rufus accompanied her into the MRI room and she discovered a new favorite smell for her "sleep mask", Root Beer, of all things. So naturally after waking from sedation, her snack in recovery was some vanilla ice cream to go with her root beer. 😊
After her MRI, it was off to Neurology. Her doctor was very pleased with Emma. We addressed a few concerns we had, however mainly her increasingly worse toe walking, and were referred to Physical Medicine and Rehabilitation for evaluation. Revisit neurology in 6 months. 

Wednesday was "eye day". A long, long day of testing different opthalmology concerns. Because her tumor was also engulfing the optic nerves and chiasm, and proton beam was targeting the same area, vision and eye health becomes a big concern for many craniopharyngioma survivors. Numerous devices  were used and testing was done, including the thickness of her optic nerves, peripheral/blind spot areas, the blood flow of the eyes, etc, etc. Her visual prescription has improved slightly, which is uncommon, however her doctor said "sometimes when pressure on the nerve is finally relieved, we can see improvement. It's rare, but possible". Revisit in 6 months for more testing. 

Thursday included bone imaging, endocrine and PMR. Bone imaging assists endocrine with her bone age, in conjunction with additional lab work to determine how she's growing.  Endocrine was thrilled with the maintained weight, but her height is not following the upward curve it's meant to for a growing child. Instead her height is plateauing/declining in curve (3cm in 1 year, instead of the typical 2 inches per year). And height isn't a huge deal, but when you consider how bone health is a factor in body regeneration and rebuilding cells within the body, this red flag of nearly 2 divinations below "normal" development is important for her endocrinologist to address, that's way more important than the possibility of 'just' being of short stature.  It's how the body regenerates itself at a cellular level . And that's the discussion of growth hormone injections. We've known GH replacement was always on the back burner of things to come, but at this point her doctor will be pushing this through to insurance and if they require a simulation before authorization, that will be scheduled at our next 6 month visit and begin GH treatment Thyroid is being controlled with current medication. Cortisol is being controlled with current medication and adrenal action plan. Puberty hormones are also under control with her supprelin implant, which will be replaced this June, for at least one more year, at minimum. 2024 we'll address if this is to be replaced or allow nature to take it's course and begin puberty. Hyper insomnia is being monitored by sleep medicine and we will meet with them next month. 
Next was PMR to address the toe walking. Physical therapy back home has been wanting to do casting, but wanted her medical team on board, which they are in favor of. They are able to do the serial casting on Monday. This will force her feet into a more neutral position. The casting will stretch her feet a few degrees for 2 weeks, removed and re-casted a few more degrees closer to neural. The whole process will take roughly 6-8 weeks, depending on how pleased orthopedic is with the improvement. After the casting is complete, she will wear AFOs for the next year to keep her feet in a neutral position. We'll learn more about this Monday when we meet with orthopedics. 

Friday, we met with oncology. He went over her MRI results, which we've patiently been waiting for the last few days. I started crying. Her tumor is not only stable, but has decreased in volume from the last scan. So much so that he would like to rescan in 6 months and if the residual remains unchanged, would like to transition to YEARLY visits. This is the news we've been waiting for! From the tumor/oncology side of things, he's so pleased with the progress, and ZERO progression of growth, he's comfortable with stretching out MRIs, and the likelihood of reoccurrence is getting slimmer and slimmer! When we once heard craniopharyngioma is a commonly reoccurring tumor, every scan there's been a thought of 'what ifs', 'what do we do if...', and I became so emotional that those fears are lessoning. Those back burner thoughts have been replaced with moving forward in tackling the numerous secondary diagnoses and treatments instead of overcome with how to treat her tumor if we get the news it's regrown. There's so much relief in that. That we made it through the worst and can "easily" handle anything else thrown out. It's definitely not easy, but it's not the darkness we once went through!

This weekend we're planning on a pop tabs donation to Ronald McDonald House. If anyone is still collecting them, please keep this amazing warrior in mind and we will gladly take any off your hands for distribution on a future trip. 

Monday, Emma will have neuro-pysch/cognitive testing. This will be like school/therapy, playing "games", problem solving and testing her academic & emotional wellness. After that, Emma will be casted. 

Tuesday, we'll head back home and Wednesday work on the transition of returning back to school with both feet in casts, the best she can. 

Thank you everyone for your support, positive thoughts and well wishes to this little lady throughout the years! Thank you to our family and friends who have helped with siblings and the love that we've immensely needed. And thank you to our community who has kept her in your thoughts and prayers through every single battle and milestone reached! 

Keep being amazing little one, you are loved by so many! Emma Brave, Emma Strong!