"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
I’m still sick, but I decided to go to school. However, I only went for math and chemistry.
I know that going to school while sick may be a death sentence, especially for me, but I have tests in both of those classes.
When I went to math today, surprise! No test. Testing tomorrow (Thursday) and Friday. 🙄
In Math I was a bit nauseous, a bit dizzy, and a bit paranoid. I wanted to leave the class and just rest at home, but then my grades would fail.
So that sucks.
I still stayed at home today, because I was sick. Also, it’s a block schedule day, which means today is useless anyways.
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?
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.
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.
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.
Remember how on April 23, 2019, Sammie said she couldn’t go to the cookbook release? Her coach said she’d be cut from the team if she missed the first day of cheerleading tryouts (on the day of the release).
Well, Sammie called her coach and said “I’m going.”
I was shocked that she did that. Because cheerleading is a big part of her life; that’s where her friends are and what she spends a big chunk of time doing.
Well, it turns out she can come! That’s awesome! Wow, what a great friend.
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:
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)
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.
Every since the biopsy (April 24, 2019) my heart’s been acting a little weird. Sometimes I feel palpitations, like the ones that occurred right after transplant.
While swimming today, my heart had full on palpitations, which is weird, since I didn’t even do any strenuous exercise.
I decided to take today easy. Even with a relaxing swim, I still felt heart palpitations afterwards. It calmed down after ten minutes in the hot tub.
Yeah, it’s been weird. I could be sitting down doing homework when BOOM, BOOM, BOOM and then it’s gone.
I don’t know if it’s anxiety or if it’s actually real. I’m considering anxiety because last year I used to feel fake episodes of arrhythmia.