Summer Recap – Part 1 of 2

What happened this summer, as told by Manny’s girlfriend:
Manny and I after being told he was finally ready to go home.

Manny and I after being told he was finally ready to go home.

I’d like to start out by clarifying a few things. When I say “we”, I am referring to myself and Manny’s family, not the Manny Alvarez Foundation. While always continuing to raise awareness and support for Alveolar Soft Part Sarcoma, the Manny Alvarez Foundation has no part in raising money for Manny’s specific treatments.

 

With that being said –

 

This past summer was an eventful one for Manny, to say the least. While there were ups and downs, we continue to remain hopeful and faithful. We’re sharing the following in hopes that we may be able to answer some questions our friends, family, and supporters had throughout the summer.

 

In May 2015, Manny received news that the tumor in his knee had compromised his bone, which led to a partial femur and partial knee replacement. This surgery was a particularly tough one. It would require a long journey of pain and physical therapy following it, that Manny continues to struggle with today.

 

During the surgery, a pathology team was able to successfully preserve the tumor that was removed from his knee and send samples to researchers within hours. We were told more research on Alveolar Soft Part Sarcoma had been done that day with Manny’s tumor than in the last five years combined.

 

Throughout Manny’s grueling recovery, it was difficult to see the brighter side of things. Until we heard news that, after being tested across hundreds of chemotherapies, Manny’s tumor cells had responded to two particular families of chemotherapies that are commonly used to treat blood cancers.

 

This is where many of you probably heard about Manny. To keep a long story short, Manny’s insurance company denied coverage for the chemotherapies that worked to kill his tumors in the lab. While the insurance company has specific guidelines that we understand, we had to do whatever it took to get Manny that medicine. We needed to see if it would work.

 

So we began to talk about it. And share it. And you all did the rest. You shared our posts across the globe. So many families in South Florida played such a large role in raising the money we needed to get Manny that medicine. Even Dr. David Katz of Yale University School of Medicine led an army of awareness and support in the Northeast. It was an incredible experience to be a part of – watching a wave of support for someone who so rightly deserves it.

 

The Crowdrise page was created that Friday. By Wednesday, Manny had started treatment.

 

To be continued…

 

With love,

 

Vic
Victoria Verdeja