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Aria’s Healing Journey Support Fund

$50,445 of $100,000 goal

Raised by 428 people in 9 months
We are walking a journey no one wants to take.

We started our journey in Summer 2018 when Aria (16) started complaining about pain in her thigh. “Put some ice on it...”, a month or so later, after a few doctors appointments, X-ray, and an MRI, I received an unexpected call from the Sports Medicine doctor who informed me that Aria has bone cancer. A diagnosis was given in mid September that it is metastatic Ewing’s Sarcoma, a rare cancer that happens mainly in teenagers.

The next eight months included six rounds of intense chemotherapy, then a limb salvage surgery, where an implant replaced most of Aria’s femur. At that point Aria’s scans showed that the spots in her lungs and on the spine and pelvis were reducing in size.

After the surgery Aria took PT sessions and was learning to walk again. Four more relentless rounds of post-surgery chemo followed.
Scans were taken again, and none of us was ready for the news received by Aria’s oncologist last week. “The scans don’t look good. The disease stopped responding to the chemo and now spreading, and we are taking you off of chemo.”

Now, a new recalculated route ensues. The next stage of treatment is a clinical trial phase III by the name of Vigil, a cancer vaccine. Aria will get it in New York, under the care of Dr. Wexler of Memorial Sloan Kettering, a top expert of Ewing’s Sarcoma.
We will arrive in NYC in a couple of weeks and will stay there for a few weeks to start the treatment.

Meantime, Aria made a list of experiences she’d like to have, activities she dreams of doing, and places she wants to visit. Places like: New York, Chicago, DC, Philadelphia, Boston, Minneapolis, New Orleans, Miami, Yellowstone, Seattle, Portland, Denver, Santa Fe, Hawaii, Paris, and Japan. Some of her wishes for activities include a visit to the Opera, soaking in hot springs, staying in a cabin by a lake and fishing, and living independently for a little while. I am determined to realize all her wishes, and so do our friends and family. If you’re ready to join in and help in manifestation and realization of dreams and wishes—please let me know.

Our beloved friend, Christine Wong, is initiating a Donation Matching fundraiser in order to support Aria to realize all her wishes. Feel free to participate if you can, whether with a donation, housing/hotels/AirBnB resources, airline mileage, gift cards, or whatever you see fitting. For gift cards/housing/travel resources, please message me, and to read more about our journey: https://my.lotsahelpinghands.com/community/arias-shower-of-love/request-to-join

or simply share our post with your friends and family who can join us making dreams true and wishes realized!

Life is beautiful and people are amazing, miracles happen, and dreams come true.
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Today is Aria's 17th birthday.
Feel free and post your well wishing here.

Blessing to you all.


In the picture: Moments after Aria was born, June 10, 2002, 5:04am
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Dear friends,

Coming home from New York, after a few days of processing, resting, and simply being, brought a big sense of relief. It's SO good to be home!

On Monday we met with Dr. Cooper that addressed what's next, and what will help with Aria's current energy level and general feeling. We are all determined to work on weight gaining, introducing new supplements like selenium and high dose curcumin, alongside with the oral chemo, two medications (one in a capsule and one in liquid which we mix with juice). The round is five days long, and taken in three weeks intervals. The medications have almost no side effects and do not influence the blood counts.

Sunlight will also be part of our regimen, and Aria will be taking that good vitamin D on our patio, directly from the source. This, along with some painting, reading, and cuddling with Kiwi can be a perfect combination.

In the next few weeks a tumor DNA sequencing called Impact will be produced. This will help to determine whether Aria be a candidate for targeted treatment clinical trials.

Monday, June 10th is Aria's 17th birthday!
She will be joined by her close friends and a petting zoo with an alpaca, sheep, bunnies and other fluffy critters. Maybe more fun stuff and surprises will appear during the birthday week...

I would like to thank our friends who donated Delta SkyMiles for our flight upgrade (I can't imagine our travel any other way!): Cheryl, Thierry, Olga, Rodger, Shachar, Jesse, Amanda, Stella, Gal, Zacc and Spencer, TaMiya, and Kirstin (hopefully I didn't forget anyone else...), a special thanks goes to Alexander who connected us with Open Homes by Airbnb and the BoneMarrow.org organization, that donated part of our lovely accommodations in NYC.

Sending hugs to everyone.


In the picture: Aria and her scooter, 2009
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Dear friends,

Just to remind everyone who wanted to donate miles that tomorrow is the date. I understand there’s a fee, so please donate whatever is possible for you.
.........

We will be needing the Delta mileage for our return.
Our friends can donate the miles to my SkyMiles account number 9035427724, Lee Lavi, laviramirez@gmail.com
On *June 1st* (our account won’t be available for donations before that date)
They also reserved an upgrade for us given we have the miles in the account by 6/2.
Thanks for everything you do for us!
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Dear friends,

New York didn’t deliver.

We arrived to New York after a very challenging day of pain management. We took a comfortable flight with an upgrade to Business Class that was donated by Delta, and settled into the beautiful penthouse donated by Open Homes by Airbnb.

We spent Memorial Day in complete chill out and enjoyed the city views and the sweet breeze that was moving through this amazing pad. We were all holding high hopes about our appointment with Dr. Wexler.
We arrived Memorial Sloan Kettering at 7:30am (4:30am for us) and had a long conversation with him. The main point was to determine whether it will be safe for Aria to have a surgery the next day, and keep waiting for three weeks until the vaccine is being made, to start getting any treatment intervention. He wanted to have new scans before making a decision.

CT and PET scans are no fun, especially with drinking a huge amount of contrast and getting an IV. once everything was done we sat with Dr. Wexler and he recommended that it will be safer for Aria to start immediate intervention (taking two chemo pills for five days, every three weeks. These pills have minimal side effects and do not affect the blood counts.) Aria has been over four weeks without any intervention so far...
So, no Vigil for us. A disappointment.
Meantime, genetic mapping will be done to see whether we can start a targeted treatment clinical trial. The doctor suggested two clinical trials at UCLA.

We will stay for three more days in NYC and start the meds tomorrow. We will take the time to process and hopefully get a feel on what to do next.

Again, I‘d like to request for you to allow us this space without sharing you emotions with us.
Meanwhile, outside the big windows, we are watching an amazing thunderstorm. Life is beautiful.
♥️


In the picture: The view outside.
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$50,445 of $100,000 goal

Raised by 428 people in 9 months
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GJ
$100
Gaye Jones
4 days ago
$180
Irit Sternlicht
4 days ago
$96
Anonymous
5 days ago
$50
Sophia Burns
12 days ago
EP
$100
Eugene Poz
12 days ago
$100
Sue Sywak
13 days ago
ER
$25
Ethan Rojhani
13 days ago
TG
$100
Tamara George
13 days ago
$25
TaMiya Dickerson
13 days ago
SB
$50
SHMUEL BERNSTOCK
13 days ago
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