November 10, 2018

Today is another cooking day with Victoria. Victoria is the chef granting my Make-A-Wish (see August 9, 2018). My Make-A-Wish is to create a cookbook. Last week was actually supposed to be my last cooking session, but she decided to give me another for my birthday (see October 20, 2018) present.

We did two kinds of Alfredo today. The first type of Alfredo was a chicken fettuccine alfredo, and the second was a chicken fettuccine alfredo with mushrooms and tomatoes.

We prepared the ingredients by slicing chicken breasts into strips, thinly slicing mushrooms, dicing onions, dicing tomatoes, and mincing garlic. We sauteed diced onions in a pan with a little olive oil. When the onion was translucent, we added the chicken breast strips and minced garlic. We let the chicken sit, and after the chicken was cooked we dumped half of the mixture into another pan.

In the first pan we added garlic powder and salt, then let it simmer.

In the second pan we added the diced tomatoes and sliced mushrooms. We also added garlic powder and salt. We continuously stirred the mixture until the released mushroom juices were evaporated.

In a large pot we added 3 cups of half & half and 3 cups of chicken broth. We added fettuccine when the mixture came to a boil. We used a whole package of fettuccine (16 oz). The fettuccine absorbs the mixture, therefore it reduces; the starch released by the fettuccine thickens the mixture, making it a sauce.

When the fettuccine was Al dente, we separated the noodle in half for each pan. The noodles were combined with the pans ingredients, and that’s it!

Today is my last cooking session with Victoria. I already chose what recipes we made to include in the cookbook. Victoria will take those recipes and write them. When Victoria is finished writing those recipes, she’ll email them to my Mom and I, and we’ll try to recreate them. Victoria and I will meet again in December to format the cookbook.

Check out Victoria: https://www.eastbayhealthychef.com/

December 20, 2018

My Mom and I met with Victoria today to talk about my cookbook.

We went to Lokanta, a restaurant in Downtown Pleasanton. Their food was good.

Victoria has to recreate the recipes and make sure they taste good. Now is Victoria’s winter break so she has time.

After she tests the recipes she’ll send them to us and we’ll recreate them too.

Then our recipes are finalized!

The process after that will be to take pictures of the food, and then a picture of me for the front cover. Maybe I can do what everyone else does: holding a plate of food and smiling into the camera.

Our goal is to publish the cookbook before February.

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 8, 2019 – Distributing Newspapers & Kina’s Coming!

Today I went to school and distributed my Pleasanton Weekly article. I showed it to four of my classmates, two of my teachers (including Mr. Lewin), and Amy McCarthy. 

I received overwhelming support from my teachers and Amy. Amy told me, “They wouldn’t give just anyone an entire page.”

Kina, my classmate, saw in the article that I was releasing my cookbook. I didn’t tell her about my cookbook before, but she said, “Can I come?” 

I thought I was going to the release alone, but now that Kina wants to come everything might change. Maybe I can invite other friends and they’ll also want to come?

April 10, 2019 – Four People are Coming

Okay, everything is awesome. 

First, let me tell you what happened. After Kina told me she wanted to come (April 8, 2019), I thought “Wow! Maybe I’m important enough that people would take time out of their day to come?”

I went home and created invites for my cookbook release. 

After that, I made a list of people I was considering to invite. Then, I very carefully crossed out name by name. I can’t invite everyone I know because seats are limited.

With my finished list of names, I created invites specifically or each one of them. 

The next day I went to school and distributed my invites to each person.

Four people officially want to come: Sammie, Alexa, Ray, and Kina.

Sammie and Alexa are cheerleaders. Ray is my friend from last year. Kina is my classmate. 

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.

April 20, 2019 – Practice for the Event

Today Victoria came to practice cooking for the event. At the cookbook release, my mom and Victoria will be preparing the food while I’m speaking.

We’re going to making Pancit. Pancit is my favourite recipe from the cookbook.

Edit: Chow Mein is now my favourite recipe from the cookbook.

We went over all the steps: from preparing the vegetables to cooking the meat to combining all the ingredients together. 

I’m confident in my abilities to cook Pancit. My mom is also a great chef (she cooks every day). And Victoria will do amazing, as she is a professional chef.

April 23, 2019 – They Can’t Come

Okay, everything is going downhill.

The cookbook release will be on April 30, 2019, which is exactly a week from now. 

Lena (pseudonym) told me, “Hey, my parents will just drive me to Palo Alto after school” and I was like, “Sure, go ahead”  but she left TODAY.

She left a week early.

Now her parents are mad at her, and told her “you can’t go anymore”, which is a bust.

That’s fine, but then Sammie and Alexa called later, and said, “My cheer coach called us and said, if you miss April 30, you’ll be automatically disqualified from the team.”

So now they can’t come.

Okay, I’m down to two people coming: Kina & Ray.

Hahaha, this is great.

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)

April 30, 2019 – Cookbook Release

I released my cookbook today (and it was AMAZING).

Yesterday I was so excited that I stayed up late jamming to Hannah Montana.

Today at 2 PM I  left school and met Sammie, Kina, and Ray at the quad. Sammie drove us to my house, and at 2:30 there was a limo in front of my house.

I mean, a LIMO!

The driver drove us to the Ronald McDonald House at Palo Alto. My mom and grandma already left before us, so they were already there.

When we arrived we were greated by a photographer sent by Stanford. He took pictures of us, and my mom came outside.

Oh, and Kayano came! In case you don’t know, Kayano was my neighbor at the Ronald McDonald House. We spent the summer of 2018 together.

Kayano got his kidney transplant! It occurred on April 6, 2019. If you remember the joy of January 3, 2019 and the disappointment of January 4, 2019, Kayano’s kidney was long  overdue.

I’m so glad that I saw Kayano. It was nice touching up with old friends, especially seeing how well he was doing.

Another person that came was Jacob. I met Jacob at Camp Taylor, a camp just for patients with heart defects.

We grew up together, and he visited me at the hospital.

The inside of the Ronald McDonald House was incredible. Beth really outdid herself.

There was a table with a Make-A-Wish table cloth covering the surface, a custom poster with ‘Justin’s Just Recipes’ and my pictures on there, and the kitchen was fully ready for the presentation.

The cookbooks were beautiful. I know I saw them before on Shutterfly, but they looked better in person.

Are you ready for the most exciting part?

THE WATER BOTTLES HAD MY PICTURE ON IT!

I mean, you know you made it when the water bottles have your picture on it!

Along with that, the napkins had my name on it, and there were even bookmarks with my name on it!

WHAT?!?!

As we approached five, it became more and more hectic. Reporters and people showed up.  

It was AMAZING.

I met the CEO of Make-A-Wish, the CEO of the Ronald McDonald Houses, the board of directors of Make-A-Wish, the director of nutritional sciences at Lucile Packard, the director of marketing at Lucile Packard, and the East Bay representative of Donate Life.

I also met reporters from KTVU Fox 2 News, NBC Bay Area, KTSF Channel 26, Lucile Packard, The Palo Alto Weekly, and Make-A-Wish.

Get them contacts! Make those connections!

When it became five, I made my speech while mom and Victoria cooked the Pancit.

Click Here for my speech.

Afterwards, I signed a couple cookbooks and got interviewed by all the news stations.

It was special. Today was special.

A Lucile Packard representative asked if I was tired, but I told her no. Are you kidding?

I’ve never been the one who’s been noticed, or the person people would swoon over.

It was nice winning.

Bring on the reporters!

The driver drove Sammie, Alexa, Ray, and me back to my house in a black SUV (still pretty cool).

At home, Sammie sent Ray and Alexa back to their houses.

Reflecting back, I think today is more important than just a cookbook release. It’s a symbol of my heart transplant coming to an end.

I know that April 27, 2019 was technically the one year mark, but today feels more like the end of an era. I think today’s special event is really a sign to “move on”.  

Today was special. I’m so happy. Wow.