August 9, 2018

Today I went to Make-A-Wish headquarters in Oakland. At 7 AM my Mom drove us to Oakland’s Chinatown to park our car. First we went to a local bakery to buy some breakfast and take my medicine.

Afterwards we went to the Bay Area Make-A-Wish headquarters. The headquarters is in an office building shared with other companies. After getting directions by security, we went inside these huge double doors. The first thing you see is Make-A-Wish Greater Bay Area behind the reception desk. The walls were painted light blue and the floor was blue carpet. The waiting area featured books that had pictures of other people’s wishes on there.

Beth was excited to see me! Beth is the Make-A-Wish coordinator that plans out all the wishes. At the Ronald McDonald house she called me to figure out more details. Beth told me the headquarters used to be at San Francisco, but then moved to Oakland. She also told me that the headquarters usually don’t have kids visiting. Usually the kids are at the hospital or at home, so me coming was rare.

Beth, my Mom, and I walked past portraits of other children with their wishes. There’s actually a girl who made a fashion runway show. She’s also a heart transplant recipient.

Edit: I met her August 11, 2018, at the transplant reunion party! She’s in the middle wearing a blue shirt:

The girl who did the fashion runway is in the middle.

Victoria, the chef granting my wish, came from Bart. She’s a nutritionist and personal chef that creates healthy meals for others. She said when she was a child, her aunt had a heart attack in front of her and died. That’s when Victoria teared up. One day, Victoria quit her job and went to culinary school. Since then she’s been a successful personal chef. Her goal is to show people a healthier way of eating.

I explained why I wanted to do this. I have a tube inside of me. Before transplant, I didn’t eat enough food each day, so through the tube I insert food inside of me. I would plug my tube to a machine and go to sleep. The next day I would skip breakfast, eat a light lunch and dinner, plug myself in, and repeat. After transplant, I have an appetite. I can start eating full meals every day. I want to develop recipes so that I’ll have enough food to not use my tube anymore. If I eat without my tube for 6 months, then my doctors can take it out.

My Mom, Victoria, Beth, and I went to take a picture in front of the Make-A-Wish logo.

Victoria will meet up with my Mom and me at our own house for cooking lessons (see August 25, 2018).

My Mom and I also checked out a government building nearby. Pictures above!

January 15, 2019

Beth from Make-A-Wish called me today.

She announced to me that the cookbook is almost done, and that it’ll be published in April.

She told me that my video made her cry. To quote from Beth: “You hear it from the wish kids all the time, but seeing and reading about it gets to you.” She also said that this blog made her feel famous. 😂

Beth published my video onto the Make-A-Wish website. Or was it the Make-A-Wish Facebook Page? Whatever. It was Make-A-Wish something.

Beth asked me what my plans were with the cookbook. Do we host a cooking show at the Ronald McDonald House and pass out the cookbook to everyone there? Do we sell the cookbooks online and donate the proceeds to charity?

I said hosting a cooking show sounds pretty cool.

Beth asked me about how we’re going to do the cooking show. Who cooks? I’m going to talk, but am I going to talk and cook simultaneously?

I said that My Mom and Beth could cook, and I could talk while they’re cooking.

Beth also asked me what other organizations I wanted to partner with. I told her Donate Life. If you read my How To Be An Organ Donor Page, you’ll see that I reference Donate Life as where to register as an organ donor.

Donate Life is the biggest organ donation network in America. Well, next to UNOS (United Network for Organ Sharing).

Beth told me that was a LITTLE too big. But, I mean, Make-A-Wish is pretty big too, right?

I told her partnering with The Pink Dot Club would also be pretty cool. The Pink Dot Club is affiliated with Donate Life.

Beth told me that she would contact the Ronald McDonald House, and I could work on contacting Donate Life.

A last thing: Beth organized a cooking show for us at the Macy’s on Union Square San Francisco in April of the day of national wish day. Sounds cool!

April 17, 2019 – A Setback

Oops. We have to leave during block.

Let me explain: Beth called me a week ago and said, “You have to leave at two,” and I tried to protest but she insisted on it.

Then I told Kina, Ray, Sammie, and Alexa but they were all fine with it. Ray has PE during sixth period; Sammie, Alexa, Kina, and I have the same class during sixth period and that class is very easy.

Then today, someone told me April 30, 2019, would be a block schedule day. What that means is that we would have to leave during fifth period instead of sixth.

I talked to Ray, Kina, Sammie, and Alexa if they were fine with this and I got mixed responses. 

Alexa is fine with this because ASL is also a nonsense class. Kina has History while Ray has Physics, but they’re fine missing it for me. However, Sammie has Math and she really doesn’t want to miss it.

I wrote to her, “hey, please come!” and she said “okay!”, so we’re all fine now.

Cookbook Release Speech

Before we start, I’d like to dedicate this speech Nicole Faith and Justin Yu.

Okay,

Hi everyone, my name is Justin Wang! I’m a tenth grader from Pleasanton, California and 16 years old.

This is my mom: Yang Wei, my grandma: Suzan Zhang, and the chef I worked with: Victoria.

I would also like to honor the unsung hero: Beth. Beth has done an amazing organizing this event. She has been so nice, understanding, and it has been such a pleasure being with her.

First of all, I would like to thank everyone that came today. It’s April 30, 2019, aka a Tuesday, and weekdays are a horrible time to have events.

As you can see, my friends Ray, Kina, and Sammie showed up, which is awesome. Actually, let me introduce each of them.

Ray is literally the smartest person I know. He’s a genius at school. Y’know, I try at school but he doesn’t even have to. He’s just that good.

Last year, I had chronic heart failure and Ray was the one of the few who supported me during that rough time. It’s so special to have a friend that’s both smart and empathetic.

Speaking of kindness, Kina is extraordinarily kind. When asked about her biggest flaw, she said “caring too much”.

Kina was actually the first person invited to the cookbook release. I was initially going to come today alone, but Kina accidently found out about my cookbook release and she said, “I want to support you.” That was so sweet.

Sammie is a very passionate person. She’s unapologetically charismatic, stunningly beautiful, and has a determined personality.

Fun story, the first day of cheer tryouts are occuring right now. She confirmed with her coach before that missing today was okay, so we were fine. Then five days ago her cheer coach called her and said, “Hey, if you miss today you’re automatically disqualified.”

Sammie and I were so sad until she had enough. She texted her coach, “Hey, I’m coming to Justin’s release and I don’t care what happens.” Finally, her coach caved in and said, “Fine, just come back on Wednesday.”

(clapping)

I really appreciate the sacrifices everyone made to be here, especially the doctors. I know patients require 24/7 care, and it’s hard to leave that environment.

Also, if you drove here, oh my god, Palo Alto is horrible, isn’t it? The traffic is insane, but it’s still nice cause, I mean, Silicon Valley.

So if you’re here, that means a lot to me, and it’s awesome to have you here.

Anyways, we’re going to make Pancit right now. Pancit is the Philippines’ signature dish, and it’s delicious. We season them with soy sauce and fish sauce and add a lot of vegetables.

At our first session, Victoria looked around our house and saw that I bought one of those pre-packaged Pancit sauces. Victoria said, “We shouldn’t do this because there’s too much salt.” (and salt is really my enemy right now)

Pancit became one of my favorite recipes because noodles are my favorite food. In this cookbook, there’s a ton of noodles. In fact, the first draft of the title was “Justin’s Just Noodles & More,” but I decided not to keep it because that’s an oxymoron (incorrect grammar).

While they do that, I think it’s time to describe my wish. So I knew I was eligible for Make-A-Wish, and I thought that was really cool, but I didn’t even consider using that wish.

So June 26 rolled around, and there was a Make-A-Wish representative at the Ronald McDonald House. My first thought was to put solar panels on the roof of our house, but my mom said that was a dumb idea.

My second thought was to travel around Europe on a food tour, but my mom also said that was a dumb idea.

The third idea was my brilliant idea. Why not a heart-healthy cookbook designed just for patients like me?

I had three main goals for this cookbook:

  1. Be healthy
  2. Be convenient
  3. Taste good

I thought this idea was excellent. After a heart transplant, I needed to be careful about my health. Nutrition is an essential part of health so it would contribute significantly to my health.

Not only would it benefit me, but it would also benefit a lot of people like me.

I‘ve always loved food (and who doesn’t like food), but I’ve never eaten full time. I ate for fun, not for fulfilling my human needs.

You can’t see it right now, but I have a G-tube. And what a G-tube is, is a tube inside my body that connects directly to my stomach. With that, you can insert nutrients.

So every night when I went to sleep I’d hook myself up. Throughout the night there’d be a constant stream of 1,000 calories, Nutren 2.0.

After my heart transplant, I have a bigger appetite than before. That basically means I can eat more than before.

I’ve tried eating full time before. Then signs of chronic heart failure returned, and I was forced back onto the G-tube feeding.

I am happy to report that I’ll be getting my G-tube out. On June 12, it’ll be gone, and I’ll finally be wireless.

(clapping)


Does anyone want to hear about my heart transplant? I know that you’ve guys probably heard patient stories a thousand times before.


Well basically, when I was two, I was rushed to the local hospital. It was Christmas day, actually, and I was transferred to a more urgent hospital: UCSF Benioff Children’s Hospital.

It took them about a month to diagnose me with this super rare blood disorder called hypereosinophilic syndrome. It’s when you have too much of this specific white blood cell called eosinophils.

It must’ve been a one in a million (and I predict it’s higher than that) gene mutation.

Kina, can you get out your phone? Tell me what’s one divided by one million?

~~~~

“Wow, pretty low right?

Okay, can you do another calculation? What’s one divided by five million?

~~~

Yup, that’s the number.

That was my chance as good as yours as being that number. And that gene mutation, in particular, was very cruel.

An immune system attacks, so it attacked my heart. By the time doctors at UCSF diagnosed and treated me, the damage was done.

The entire right side of my heart was damaged. At age two I was transferred to Stanford for my first open heart surgery. With a GLENN procedure, they bypassed my right ventricle to go to my lungs.

Y’know, that surgery doesn’t last forever. The doctors told my mom, “Hey, it’ll wear off when he’s a teenager” and she was like “okay.”

And everything I told you about, I have no memory whatsoever. I was so young that I forgot it all.

And that made it easy for my mom. My mom told me nothing about my hypereosinophilic syndrome, nothing about Stanford or UCSF, and nothing about my heart.

She said, “It’s better to live in ignorance than in fear.”

I don’t agree with that, but I don’t disagree with that either. My mom had a decision to make, and it was the lesser of two evils.

Also, I’m not saying I’m totally dumb. I know I had a feeding tube, I know I had a scar, and I know I had shots every day, but I didn’t know why. I didn’t think it was that serious.

When 2018 rolled around, I was experiencing chronic heart failure again. This time my mom told me everything. In a car ride home, she said, “You have chronic heart failure.”

When someone hits you with all that, it’s pretty sad. Not gonna lie, it was sad.

So I dealt with that. Then I went in for transplant evaluation. Oh my god, that was, that was bad .

The transplant team met, and denied me. The reasoning was that I was too “healthy” to be on the list.

After that everything went downhill. I had more frequent visits to the ER, more checkups at the hospital, and I missed more and more school.

So the second time I was evaluated, they were like “why not.” They accepted me, but as a status two.

If you’re not familiar with the list, a status two is the worst place you can be. It’s the position that’s the least prioritized.

A doctor said I was on the list “for a taste of being on the list” and I wasn’t there for real.

The last time a status two had a heart transplant at the Lucile Packard Children’s Hospital was four years ago.

Two weeks later, at 3 AM, my dad woke me up to tell me that a heart was waiting for me.

(clapping)


In case you guys didn’t notice, today is April 30. Well, my heart transplant was on April 27, 2018.

Last Saturday (April 27, 2019) I celebrated my one year anniversary. I decided to honor my heart by having fun with my friends and family.

I cannot emphasize the importance of the one year mark.

Remember in the bible when God promised Abraham and his descendants a land where they’d have salvation, liberation, and freedom?

Well, the one year mark is my promise land. The doctors promised me a new life: one filled with activity, normality, and freedom.

I didn’t really expect all the work that I had to put in to get towards that promised land, but I got there.

If there’s one thing you should know about me, it’s that I’m very dedicated. I’m determined to keep my heart with me for longer than fifteen years. I eat healthy (thanks to this cookbook), exercise every day (either underwater or on land), and am always cautious about my health and the world around me.

I’m pretty proud of what I’ve accomplished within the span of a year. I’ve completed a cookbook, started a blog, and established healthy habits I’ll carry with me for the rest of my life.

In case you’re wondering about the cookbook’s name, I decided to name it ‘Justin’s Hearty Recipes’. I named it that to honor my heart, and emphasize that my heart transplant would always be an important part of my life.

‘Justin’s Just Recipes’ became more than just a cookbook, it’s a symbol of hope. Hope that even in horrible situations there’s always a light at the end of the tunnel.

I love this quote, and it’s by Helen Keller: “Although the world is full of suffering, it is also full of the overcoming of it.”

She couldn’t have said it better. Through difficult times, we can give up and immerse ourselves in despair and sadness, but we can also live in an atmosphere of hope and expectation of light.

Thank you for coming to my cookbook release. I’ll be signing cookbooks soon, but in the meantime, feel free to try the Pancit.

(clapping)

October 16, 2019 – Hanging out with Beth from Make-A-Wish

Guys, can I tell you how awesome Beth is? We met Beth on August 9, 2018. She’s the director of Make-A-Wish Greater Bay Area. In fact, she’s the one that introduced my cookbook.

Today my mom and I decided to meet with Beth. Since today’s PSAT schedule, I have the entire morning open to myself. 

Beth is retiring. Woohoo! I am so excited for her next step. I understand she’s a little uneasy, but I believe in her. She pondered over it and made her final decision, and I support her. 

We met at Oakland. More specifically, at a coffeehouse called Modern Coffee. There are apparently 3 Modern Coffees in Oakland. My mom dropped me off at the wrong Modern Coffee (which I gave her directions her to), and I had to walk 15 minutes to get to the other Modern Coffee. My mom already met Beth by the time I arrived.

We talked a lot about my future. About my college, I’d want someplace in a city. Not in California. Beth told me education is extremely important. I have to get a college degree. About my job, you’d think I’d know what job I could do. But advocacy doesn’t pay the bills. Beth said I could always work at Make-A-Wish. In fact one of her coworkers was a wish child. 

I said I would be going to the conference in Phoenix. The national Make-A-Wish conference is  held in Phoenix, Arizona (where their national headquarters are), and this year yours truly was invited to speak. Beth said to have fun, and I for sure will!

We talked about Beth. Of course I can’t write it down and share it with you (it’s her personal stuff), but she did recommend to my mom for her to shelter foster children.  I mean since I’m going to go to college, my mom might have some time. She can fill that empty hole with foster children.

¯\_(ツ)_/¯

I had to get back. Thankfully there was that PSAT schedule, and there was *shrug* no use in taking it. I had to go back to math class. My classmate saw I posted a picture of Beth and I on social media and asked me how was it. I said “good.”