341
341
14

Issy's Health Care Fund

$56,580 of $35,000 goal

Raised by 355 people in 13 months
Created July 6, 2018
Choi-Kwei's God Family
on behalf of Jeena Choi
Our beloved Issy went into Yale Hospital to see an ENT and pulmonologist, and after a weekend's worth of tests and Issy's deteriorating condition they discovered a cerebellar tumor by her brain stem. It took an 8-hour surgery by a brilliant, dedicated team, and a whole lot of prayers, and now Issy is "Tumor-Free." Leaving Frank, Jeena, Issy, Lu, and all those praying for Issy in a posture of profound gratitude to God.

But the medical expenses are high, and there will be months of hospital bills (between $250,000 and $500,000, estimated.)  We'd love to help defray the cost for our Kwei-Choi family.
+ Read More
June 20, 2019
Dearest friends who love Issy and our family,

We are keeping this page up so that we can share Issy’s progress.

So… seasons have changed, school year has come and gone, countless medical appointments, consultations and therapy sessions were attended, and now, summer is here and we are approaching the 1st anniversary of Tumor Independence Day!
But here’s the thing: this update is a difficult one for us and it took me weeks to muster up the energy to write it.

Last update left us all full of hope that the myotomy surgery will help Issy swallow. Well, it didn’t. The swallow team is dumbfounded and no one at MGH nor Yale can give us an accurate prognosis when it comes to her dysphagia.

After the surgery on 3/20, and seeing there is no progress even with surgical intervention and continued therapies, we brought Issy home from Boston. She had been away for 18 weeks and our family set a record for the longest stay at Christopher’s Haven. It was time to come home.

Amidst the continuing challenges and heartaches, there has been good news too:
Back in Dec., Issy left on a wheelchair, but returned home in April without one! Her recent MRIs are clean and her hair… wow- grew back in full force in thick, WAVY (she had stick-straight hair prior to chemo) strands! She also got back in the saddle thanks to New Canaan Mounted Troop’s adaptive riding program, turned into a teen on May 4th, watched Hamilton in NYC (thank you, LivFree organization!) and one of her wishes came true: a Westy puppy to call her own!

What’s more, on June 17th, Issy went back to school (Middlebrook Middle School). It was the last day of school and it was just for an hour, but a monumental progress for Issy. She had a wonderful time cocooned in a favorite teacher’s room full of special friends who wiped away her anxieties about walking into school for the first time since cleaning out her locker last June. We are confident she will return this Fall as a 8th grader.

We’ve seen many specialists and added in psychologist and alternative therapies like hypnosis and cranial osteopath. But at this point, all of them agree that Issy needs to focus on healing… her brain was basically assaulted back-to-back-to-back with neurosurgery, chemo, radiation and more intervention. So now we watch her enjoy just being Issy as much as she can bear in her current situation, and let her do things she loves, like horseback riding, playing with her puppy, hanging out with Lucia and friends. Let her be a kid and not a patient. That is where we are and that is for once, all of the doctors’ ONLY orders.

We will be home all summer so stop by and say hello~
- Jeena + Frank
+ Read More
Dearest friends of Issy,
Sharing some updates~

Today is Tumor Independence Day 247 / finishing up Boston week 12.
Yes, Issy and I are still in Boston receiving physical, occupational and swallow therapies. Issy completed proton radiation treatment on Jan. 14th. Othr than losing some patches of hair on the back, she did great and won the hearts of all the staff (Thank You, Mass General radiation oncology team!!!).

We decided to remain in Boston for a swallow program appointment at Boston Children's Hospital on Jan. 22nd. Well, that appointment involved a swallow test and the images captured showed Issy still could not swallow at all. We showed those to the swallow specialist Issy was just starting to work with back at Mass General and this super astute therapist suspected something else was in play... because Issy had been working so so hard on her swallow exercises and the therapist (and us too) can clearly see her triggering swallows. So this led to an ENT appointment where the endoscopy sort of confirmed the specialist's suspicion that Issy's upper esophageal sphincter (UES) muscle had tightened (possibly due to radiation). The ENT actually told us her swallowing ability "worsened" compared to her previous swallow test done in Oct prior to radiation. Devastating news... for a child who hadn't swallowed in 8 months.

However, he gave us hope and sent us to a super specialist at Mass Gen. The neuro-gastroenterologist (there are maybe 5 of these specialists in the country?!) performed a procedure - I won't get into it here but it was horrific- to measure the pressure of the muscle which confirmed the UES is indeed closed, which meant absolutely nothing can pass through her throat.

We took this news as a positive. Why?
Before this new development, we were told by many, "time will heal, continue swallow exercises" with no timeline, no clear rate of recovery whatsoever. But with this confirmation, it gave the ENT and Neuro-gastro something to work with, something they were trained to fix!

Issy is now scheduled for a surgery on March 20th (1st day of Spring!) where the ENT will perform a myotomy of the UES. It is a permanent incision of the muscle which he says has 80% success rate and will provide immediate relief so that Issy can re-train to swallow and eat again. Hallelujah! Issy set a goal of eating ice cream on her birthday (she turns 13 on May 4th) and we are so hopeful that it will happen.

In the meanwhile, she continues to improve physically, her last MRI in Feb. was CLEAN and happy to report hair is sprouting abundantly, giving Issy a naturally chic 'do. She also picked up knitting, reading tons, enjoying studying together with Harvard Buddies (Harvard students who come and help with homework) and keeping up with school work thanks to a tutor that her school found for us. She daily amazes us with her grace and spirit of calm no matter what, teaching us patience and persistence wins the day.

And as this is a new year, so is the cycle of deductibles. :) Your incredibly generous contribution is going towards not only the medical bills and Boston apartment housing costs but also allows Issy to participate in additional rehab treatments that are not covered by health insurance such as: aquatic therapy once we return home (amazing for improving limited mobility), therapeutic horseback riding in warmer weather (Issy's #1 activity to look forward to), swallow/feeding programs, and shhh... maybe even a little pup that she's been wanting (she's been visiting a doggie daycare facility for small doses of fur love and snuggles).

So this update is closing on a very optimistic note. Will keep you posted after the surgery on 3/20.

THANK YOU, everyone for cheering us on and keeping the faith! We are humbled, grounded and strong because of You. xoxoxo
- Jeena + Frank
+ Read More
*Christmas greetings and update from Boston*

Dearest Friends of Issy:
We hope you are enjoying the beauty of the Season and its buzzy spirit.
As of today, Dec. 21, 2018, Issy is 171 days tumor-free! Here is a very belated (wow- 3 months since our last update?!) update on Issy’s journey to healing.

Issy received her 4th and final chemo infusion in mid-Oct., however, took many weeks to recover from it. She received total 14 transfusions during chemo treatment: 3 blood and 11 platelets… most of them, during 3rd and 4th rounds of infusions. There were countless rush to Yale oncology clinic each week, but Issy modeled for us perseverance and grace each day, even on days when the mountain seemed impossibly high. She was and continues to be the most patient, patient. She finally checked off 'chemo' from her treatment plan on Nov. 15, 2018, and was cleared for the next step: radiation treatment.

After consulting with Yale radiation-oncologist, we took Issy to Dana Farber and Mass Gen for second opinions. You see, the rare tumor location (Germinoma cells just don’t appear on the brainstem) meant no standard treatment plan in place for Issy, so no one could say, “THIS is the best treatment and here’s the research behind it.” We were seeking second opinions on whether Issy truly needed radiation AFTER going through the horrific chemo treatment… for a tumor that was completely removed. Also, we desperately wanted Issy to get a break from all the hospitals.

Alas, the specialists at both hospitals agreed that given what they know about Germinoma (funky and unpredictable, were their words), Issy most definitely needs radiation treatment to ensure eradication of any cells left behind. Yes, even after 4 rounds of chemo. After some research, we decided to go for Proton radiation treatment at Mass General Hospital. Proton is capable of delivering much more targeted beam than Photon which is used in most cancer hospitals. Mass Gen was the first to use Proton to treat patients and is one of only 25 Proton facilities in the nation. What’s more, Dr. Shannon MacDonald, Issy’s rad-oncologist at Mass Gen is a respected specialist, renowned for her decades of work with Germinoma cases.

So here we are, in Boston, on 7th day of Proton already! She is receiving 20 treatments in total.
Sharing, with Issy’s permission, her Proton radiation experience. It is our hope, when and if you meet another brain radiation patient young or old, you will share Issy’s experience and reassure them.
She was anxious on the first day, but now, she feels so relaxed lying there, she comes out smiling.

Pic 1- this is the ’gantry’ where Proton beam is delivered to target fields using custom brass aperture. Nurses position Issy to precision each time.

Pic 2- here she is, ready for treatment. The mask is to restrict her movement during beam time. They made accommodation for a thin tube so she can suction if she needs to (still can’t swallow!).

Pic 3- you can see the brass aperture under her head. She has 3 of them, for the 3 diff fields and depths. Actual beam time is prob less than 2 mins.

Fun facts: she blasts Taylor Swift or the Greatest Showman soundtrack. The Gantry background color can change- she goes for purple but there is a remote to change colors. Even disco lighting!

Fascinating... right? We are forever grateful for the amazing technology, facility, staff and God’s perfect timing on getting us to this point. We are incredibly blessed.

So we wish you and yours, immeasurable blessings--- you know, the kind that is “pressed down, shaken together to make room for more, running over, and poured into your lap.” Luke 6:38

Merriest Christmas and Brightest New Year!
the Kwei family
+ Read More
Hello friends!
We are delighted to report that Issy is now home getting physical and occupational therapies, speech pathologist to help retrain her swallowing muscles and school tutoring to keep up with 7th grade! All the while trekking to Yale weekly for various follow-ups. She has two more rounds of chemo left, which means about 6-8 weeks left in that treatment portion. She will get a little break after that, then few weeks of radiation, TBD.

While Issy is weaker since chemo started and pretty much in isolation due to ultra-low immune, her spirit never falters and is even OK that she still can't swallow because that would've meant "tasting all the medicine that I have to take!" along with the yummy (?) hospital food.

It has been 78 days since our extraordinary journey began and no doubt there is a long ways to go. Yes, we have moments of despair but more than anything, we feel beyond blessed and encouraged knowing we are surrounded by loving, incredible community who reminds us daily that we are never alone. We are forever changed by your grace and compassion. THANK YOU for being with us, and WOW to friends and colleagues from every chapter of our lives! We can't wait to celebrate with you all at the finish line.

Blessings to you and yours,
Frank and Jeena
+ Read More
Read a Previous Update

$56,580 of $35,000 goal

Raised by 355 people in 13 months
Created July 6, 2018
Choi-Kwei's God Family
on behalf of Jeena Choi
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$100
Anonymous
16 days ago
RD
$150
Romeo Dorotan
2 months ago
PC
$500
Patricia Conforti
5 months ago
MA
$100
Mack Araki
5 months ago
JH
$50
Julie Hughes
5 months ago
$100
Anonymous
5 months ago
$500
Anonymous
5 months ago
VS
$50
Vickie See
5 months ago
$100
Anonymous
5 months ago
$200
Anonymous
5 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.