Pray for Presli

Think someone loves her new animals class!!!

Making an impact to find a cure...

Jack’s journey: Patriots super fan battling incurable disorder surprised with Super Bowl tickets

It’s been a little bit of time since an update - we were in a middle of a move to the east coast where we now reside in North Carolina. Here is a note from Presli’s mom this morning... “I just had Presli’s IEP transition meeting, wow. What a difference. Off meds and post surgery, healed from that process, new smaller school where she is herself not her condition. . . This girl is thriving. Her advisor said that reading just her reports, testing and attendance from the last 3 years they were expecting a little hellion. 😂 She stunned and surprised them.
This kid, she’s carrying good grades, her attendance is better then ever and she’s confident and rocking her social game.
Yay for her IEP, for a staff that is helping her thrive, for a school with courses that fit her dreams, for a kid being herself, for health. . . It feels really nice today to see where she’s at.”
Sometimes in life a “change” has a lot more positive impact than initial view allows.

Yesterday marked Presli’s 10 year anniversary of the beginning of this journey - mom said it best....

Today is the ten year anniversary of Presli’s first surgery, Chiari Malformation and “bump” biopsy. . . Now known as the mass we had removed this year.
When I think back to that day. . . And how much has happened in ten years, it’s mind blowing. I was so unaware and raw to her (our) reality back then.
Ten years, Five surgeries, Two rounds of chemo, countless scans and tests and millions of dollars in medical bills later . . . She is happy, feeling better and still a lifetime warrior for Neurofibromatosis (NF).
That first surgery we had a waiting room stuffed full of friends and family. . . I think about all the support from literally around the world, the friends we’ve made through this journey, the way our lives have been touched and blessed by so many . . . I’m humbled and grateful. This NF ride hasn’t been fun but Miss P has handled it better then I could ever dream of and has taught me more then I could ever have imagined.
So, on this ten year mark I just want to express my heartfelt appreciation. And our dear family and friends, you have carried us and walked along with us. . . Thank you.

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Thank you for all the BDay wishes!!

Happy 16th Birthday to Presli!!!!

Great news...Presli had follow-up with her surgeon today. No signs of tumor coming back - stated with this type of tumor, would see by now.

Thank you Colorado Avalanche Ice Girls - you made Presli’s day!!! Special thanks to Carlie!

Here we go, round two for P on her chemo meds. We started tonight, 2 pills a day for the next 180 days. Just when the side effects were going away from the last round she starts again.
Praying this is the last time.
Prayers appreciated, Thank you
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Hoping to get Presli’s drain tube out today!

We just got Presli home. Drain tube still in...but she is home!!!