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Ezequiel’s Story

PLEASE NOTE TRIBUTES ON CARING BRIDGE DO NOT GO TO THE FAMILY.         

Donations benefiting the POWELL- PORRATA FAMILY can be made at www.ezpowell.org by sending checks to Alex Porrata at PO Box 667, Inverness, CA 94937 or by sending a donation through PayPal to the PayPal account alexporrata@mac.com.  Please note that you are making a "gift" in the memo area. Thank you!
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As most of you know by now, our sweet Zekie has been diagnosed with cancer and Zekie's beloved father died suddenly in his sleep or a heart attack only 19 days after the diagnosis.  Zekie is in good hands at Oakland Kaiser where he is undergoing chemotherapy now and will begin radiation in June. It's going to be a long journey, but we have a great medical team, hope, and love. Lots and lots of love. We appreciate your support and words of hope and encouragement during this time when it matters most.

Latest Journal Update

EZ's Make-A-Wish 🌠

Hawaiian Airlines let us have a go in the cockpit. EZ pretended it was the Millenium Falcon.

Hawaiian Airlines let us have a go in the cockpit. EZ pretended it was the Millenium Falcon.

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Last week, EZ's Make-A-Wish trip finally happened. We had been counting the months, weeks, days and hours up to EZ's dream vacation. To this day, we still do not know who nominated EZ for his wish. Whoever you are, we LOVE you! In all honesty, EZ needed major nudging when it came to articulating what his one true wish would be. He's only five, so a trip to Target for Star Wars Legos would have filled him with joy. But Titi Yoli and I were not going to let this opportunity end up with a shopping spree. We've been through the ringer and wanted something bigger and more meaningful. Not "Bat Kid" big, which EZ would have been a terrible candidate for- he hates having his picture taken and struggles with showing gratitude. EZ was so shy around the Make-A-Wish staff, that Titi Yoli and I helped him come up with a trip that would support his need for Vitamin D and wouldn't stress his bones. Sun, beach and pool time was what EZ really needed. And so did we. I've got to give it to Make-A-Wish and Disney Aulani for a perfectly planned and orchestrated experience. From the door-to-door transportation to the special touches like a private photo shoot with Mickey & Mini, a cabana for the Porrata-Powell's for a day, front row at the luau, surprise gifts delivered to the room, we were totally impressed.  All the thoughtful gestures made EZ and our family feel so special. It was very cool to wear our Make-A-Wish gear at the airport and people would smile and give us love. We took the opportunity to jump into the Disney culture one hundred percent. I found myself singing, "When you wish upon a star..." and wearing my daughter's pink sequins mini mouse ears at every opportunity.  My parents were able to join us as well as Cris, my sister's husband. The parents got a suite with a kitchen so some meals were enjoyed at home. Chris kept us eating well (he's the BEST chef ever) and got us off the resort with a day trip to the North Shore. The parents were awesome. They helped us with the kids every morning so we could go to spin class and joined in the fun with dinners at Monkey Bar and Mai Tai's on the beach. They needed the trip as much as we did.

The anticipation of the wish got us through the end of treatment. Knowing that the trip was coming gave us something to look forward to. I didn't anticipate how low I would feel when we got back to the mainland. It was like everything amazing was over and I was just waiting for the other shoe to drop. Now that Make-A-Wish is over, we are quickly moving closer to whatever the future holds for us.  The Sunday we returned, I was paralyzed with fear and found myself crying at the drop of a hat. It's like the pendulum swung in the opposite direction and I was low, low, low. Cancer is often described as a roller coaster ride. It's the staying in the moment,  forcing myself to enjoy today that can be so hard. When I feel scared, I try to remember that whatever happens, my worrying won't change the outcome. And of course, my way to survive this is to find the next thing to throw my energy into. The next big thing on our plate is EZ's Lemonade Stand. We have been asked by Alex's Lemonade Stand Foundation to represent California's pediatric cancer families during this year's "Lemonade Days",  a national weekend when thousands of families across the nation host lemonade stands to raise awareness and much needed funds for pediatric research. We are pairing our fundraising effort with a free community party at the Little Yellow House and Commons in downtown Point Reyes. There will be live music, crafting stations (of course), a cake walk, photo booth and more. Folks who feel so inclined are encouraged to donate for pediatric research, though most activities are free. For our friends who can't be there and would like to chip in for Rhabdomyosarcoma research, you can visit the following link to EZ's page. We thank you for your continued support.  CLICK for EZ's Lemonade Stand.
Love,
Alex
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Comments

12 Comments

Barbara Jay
By Barbara Jay
See you at the Lemonade Stand!!
Thank you for that wisdom: "worrying won't change the outcome".
We'll all practice it together, and love each day for the goodness it brings.
Alex, you are love and wisdom for us, each day. xxxxxoooooooo
tracy perlich
By tracy perlich
<3 you all! Cheers to the future and the future is BRIGHT because you, my fireball, and your amazing family make it bright! xo
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Jackie Crawford
By Jackie Crawford
Make A Wish isn't over.... Just your trip! I will always be here!

EZ, Little Yo, Big Yo, your family and you are amazing and I love you!

It was such a pleasure and an honor to work with all of you to make EZ's Wish a reality.
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Laura Brainard
By Laura Brainard
So great and heartwarming to see all the fun you had. I'm working on the day of your lemonade stand, but will see you at summer camp!
Mike Cobb
By
Great job Alex and family! Nothing but your future ahead of you.
Cate White
By Cate White
What a well deserved experience. I wish it go on forever. I'm gonna try to make it to the lemonade stand. I love you!
Jennifer Livingston
By
Sounds like a much needed trip. Glad I got to give you a hug that Sunday evening, even though I hadn't known your sadness that day. See you at the awesome lemonade stand.
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Sarah Tesnjak
By
Praying for continued and enduring strength, so glad your family was able to have this trip. thank you for sharing and for being open and honest.
Sarah
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Janet Robbins
By Janet Robbins
So happy for you & your family that you could have this trip, it sounds fabulous! We come home at the end of the month. I'll look for you all at July 4th foot races! xo
Seana Luddy
By Seana Luddy
That's so wonderful Alex - you all deserved it - we will see you at the lemonade stand !! All our love ❤️❤️
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