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May 19-25

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Friends and family,

I don’t even know how to say this... we are losing our baby. We thought he was going to beat all the odds since he’s done so well, but...

Greyden had a routine MRI last week, as he does every 6 months since his diagnosis, and we were told the doctors saw new cancer  in his brain. This time in the nerves of his brain. We were completely shocked as he’s had clear brain MRI’s for 2 years, and we’ve been successfully containing the tumors in his eyes. 

To get a total picture, the dr.s ordered a spinal MRI and found that cancer has traveled along his central nervous system and that the whole length of his spine is covered in advanced tumors. Because his last MRI, 6 months ago, was clear, this new cancer has been quickly and aggressively growing. 

This is a common story for Trilateral Retinoblastoma, metastatic cancer that comes back with a vengeance. Based on this the doctors are saying it’s just a matter of time and that we should be prepared.

We are so shocked and heartbroken and it is all happening so fast.

I’ll post more later, but right now we are trying to just spend quality time with our Greyden and manage his growing nerve pain.

We ask that you allow us this time and, for now, if you want to reach out for any reason, contact our close friend Paula, at (239) 850-5512.




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