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Aria’s Healing Journey Support Fund

$53,586 of $100,000 goal

Raised by 449 people in 11 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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Dear friends,

A challenging week followed the emergency back surgery.

In the first couple of days Aria was not able to move her body at all; she lost the sensation in her legs while the upper body was very painful to move due of the surgery. This entrapment feeling that was so hard to endure.

A couple of days later some sensation came back to the legs, but still no ability to move them. More movement in Aria’s upper body was available, which gave her some mental break.

Daily PT sessions help tapping into relearning basic skills to be applied without being able to move the legs; such as propping and sitting herself up, as well as strengthening the arms.

It’s is expected to be a slow process which will have to continue at home.
We are lucky to be able to hire a physiotherapist who specializes in spinal injuries to come to our home daily for an hour to work with Aria. One special person in this support community took it upon himself to cover some of this cost.

The prediction for discharge is around Wednesday. Kaiser Permanente provided a hospital bed and other necessary equipment and supplies for home care.

We are looking forward to some quiet and peaceful time at home.

Love to you all.
♥️
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Dear friends,

Just a quick note to update that the surgery was successful and the tumor was removed. The pressure from the spine was relieved and Aria has some sensation in her legs.
This afternoon she starts physical therapy.

Please keep Aria in your hearts and thoughts for her thorough recovery.
♥️

In the picture: MRI of the surgery site prior to tumor removal
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Dear friends,

In the past couple of days Aria experienced sever back pain. Her pain meds didn’t quite help. This morning she started feeling numbness in her legs and we ended up at the ER. The concern was a spinal injury.

After an MRI, a CT scan, and an X-Ray we were rushed to the Kaiser Los Angeles Medical Center in Hollywood for an emergency back surgery. Aria has a small tumor that put pressure on the spinal cord, and caused the pain and numbness.

Dr. Wong will remove it and the surgery will be about two hours long.

Please send Aria good vibes, prayers, and positive thoughts tonight.

Love to all.

In the picture: On the way to the operating room
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Dear friends,

As we were planning our trip to Monterey, our motto was "The juice must worth the squeeze." There were some X-factors like: Will the train ride be clunky or smooth? How easy the boarding process be with the wheelchair? Will our hotel suite be accessible and easy to move in?

We were relieved that the whole trip went smoothly and offered a truly magical mini vacation to both of us. Riding on the train took about seven hours of a gentle sway, almost a cradling feeling. The big cabin window offered continuous views of ocean and beach landscapes. The seats were reclining and turned into a bed for sweet naps. The attendants brought us our meals which were lovely, and the conductors assisted with boarding with special ramps and lifts.

When we entered our hotel room we were immediately mesmerized by the sound of the waves. The large windows opened to the ocean, almost touching the water. This soothing sound was our music, soul caress, heartbeats, and lullaby. The bed felt like a cloud, the fireplace was on, and the room offered beauty and comfort.
An afternoon reception with wine and cheese, and the fun trip to the Monterey Bay Aquarium sealed this relaxing escape. We were simply happy.

On Friday we brainstormed with Dr. Cooper, looking for options that will eliminate pain days. We decided to try and shorten the interval of this next round from 21 days to 17-18 days. The current goal is to allow Aria a continuous weight and energy gain, without the setback of pain days (a cycle of pain >pain meds >loss of appetite >sleepiness >less movement etc.)
In the next week we will try and nail the onset of the round as soon as pain starts, without waiting a few days for the 21st day as was prescribed in the last three rounds.

Wish us luck!
Love and sunshine from us.


Video: A room with a view
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$53,586 of $100,000 goal

Raised by 449 people in 11 months
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$50
Marianne Caparros
3 days ago
RT
$333
Richard Takahashi
6 days ago
RE
$36
Ruth Erez
6 days ago
SB
$50
Sophia Bowers
8 days ago
JG
$300
Jim Graves
8 days ago
$100
Kathy Levaton
10 days ago
EL
$50
Elizabeth Lynn
12 days ago
CW
$1,000
Christine Wong
12 days ago
$150
Ariel Averbuch
13 days ago
JC
$50
Joseph Canon
16 days ago
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