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 I hung out with Izzy. I met Izzy at the transplant reunion party last year (August 11, 2018). Since then, we’ve become friends.
She’s also a heart transplant recipient. Not only is she younger than me, but she’s also more active than me. She does gymnastics, volleyball, and track.
We met at Denica’s Real Food Kitchen, which is a cafe that does a lot of brunch stuff. Since I wanted to be pseudo-healthy, I got a salad.
We talked a lot. Izzy’s medications have significantly reduced since her transplant. On top of that, she’s always being active and has almost never been sick. She’s always careful in school.
If she’s at a playdate or sleepover, she makes sure to grab her medication or have her mom bring her meds. So she’s very responsible.
We also talked about my driver’s license and college. I’m in SAT Prep class right now and it sucks. It takes up all my time and I can’t even update my blog.
For my driver’s license, I’m pretty lazy about driver’s ed so at this point I’m just going to wait until I’m 18 to get my permit.
It was a pretty good day meeting Izzy again. She asked me if I’m going to go to transplant camp, and I said I would. She said it’s a lot of fun, and that it’d really be great.
I just heard of his death today. My mom told me in the car. But he didn’t die today, he died on November 7, 2018.
I had to scroll down on his Facebook page, Brayden’s Brave Heart, to find the date of his death, and it broke my heart.
Even after his death, his Mom posts daily with pictures of Brayden and reminiscing about his time alive. And not only that, Brayden has impacted so many others. Did you know that they found a stone in Hawaii with #BraydensBraveHeart written on it?
I used Brayden in my YouTube video as an example of why you should donate. I made him a prime example of the success of organ donation.
All this time, I’ve been advocating that life will always be better after transplant. I’ve been doing that even though my doctors always emphasized “transplant is a treatment, not a cure.”
Brayden deserves better. He deserved to live.
He’s fought so hard to be alive. Why is life so unfair.
Brayden was always impacting lives. Even after death, he’ll be impacting lives. He’s impacted mine. 🙏
(hi I read this journal entry and it’s kind of sassy for some reason so please be warned)
It’s great how I push snooze on the alarm but it’s actually blood draw day so I’m technically being late to the blood draw and oops can’t do that. We love it when my mom rushes through traffic trying to get to the clinic as soon as possible.
So I got my blood draw. Put on my mask when stepping outside because California can’t control their wildfires, and went back home to sleep until I had to wake up again.
We’re going to Stanford. Biopsy day!
If you don’t know, a biopsy is a procedure to take a piece of muscle tissue. The biopsy I’m receiving is a biopsy that’ll take a piece of my heart tissue to test rejection.
When I got to Lucile Packard, I met Jessica’s (pseudonym) grandma! The last time I met Jessica was on September 11, 2018. I made a card for Jessica on September 28, 2018.
Jessica’s grandma and I have history way back. We used to see each other in the Ronald McDonald House all the time. We eventually talked and shared our stories.
On September 11, 2018, I talked to Jessica about my heart transplant. I wanted to tell her the truth because she deserved to know what was going to happen.
I knew how devastating Jessica’s story was. Jessica’s grandma has been in the Ronald McDonald House for a long time, and Jessica even longer. They were waiting for so long.
Guess what. Jessica got it. She got a heart!
In November 2018, Jessica received a heart and underwent a heart transplant. And she’s doing so well. She’s going to school full time, participating in PE, and living a normal life.
In fact, I saw her blood pressure and oh my god, it’s so good. It’s better than mine.
Jessica is a living example of the success of organ donation. Being in the “normal” world, it’s easy to forget what I’m fighting for. But my advocacy, speeches, and Tasty video is for patients like Jessica, Nicole, Brayden, and Justin Yu.
I can’t deal with needles. I hate them so much. Unlike other people, I’m weak (other people are not as bad as me). I had to develop a tolerance to needles because I experienced them so much, which is why I don’t cry. However, you’d think I’d get used to them.
Nooooooo
My nurse put in the IV, and my mom offered me her hand. I know I’m a baby, but I still hold my mom’s hand when the nurse puts in the IV. I held my mom’s hand and twisted it.
I was worried that the IV wasn’t working because I didn’t feel the blood rushing out, but it was a miracle. It was in!
Guess who popped out of the curtain and surprised me? Camila!!
Camila who? Camila my bestie from transplant camp! We met at Lucile Packard’s transplant camp for transplant patients, where Camila, Miranda, Rocky (pseudonym), and I became the four musketeers.
She’s my next-door bedmate. We’re sharing a room together!
I talked some more to Camila. She’s actually turning 17 on Friday. She’s going to celebrate by getting dinner with her family, and then hanging out with her friends the day after.
Then she went to get her biopsy. How dare she leave me. But anyways she left, and I told the nurses about my Tasty video.
They gathered around at marveled at the high production value. Wow, I was there! They were super excited about it and said they would try it out.
Camila came back and it was my turn for the biopsy.
I was wheeled down to the biopsy, went into the procedure room, went onto the table. Same old, same old, same old.
I was inspired by Camila. She came into the biopsy without anesthesia and without an IV. I could try that, I thought.
I decided to do this biopsy without any medications. No general anesthesia whatsoever. I could say the word and they would use my IV, but otherwise we wouldn’t use it.
I’ll describe what I felt: the cleaning of my neck with cold alcohol cleanser, a sharp pain from the needle insertion of pain medication, burning from the pain medication, a lot of pushing and pulling, and then a lot of pushing and pulling. At least that’s what I felt.
It was not bad. I think since I knew what wasn’t happening and was ignorant to how it felt like, it wasn’t that bad. Plus the sharp pain and burning was only for a second. Not even that bad.
Next time, I can go into the biopsy and not get an IV!
Too bad, being high feels great.
I came back to food waiting for me. My nurse is a godsend. She ordered the food while I was in the biopsy. Since I had to go NPO (no food) midnight yesterday, I was pretty hungry.
My neck is sore (of course), but it’s better than being sore in the groin (where they struck before. last biopsy was the first time they used the neck).
The doctors came in to check up on me.
I think I impressed my doctors. I told them everything I was doing since they last saw me: I went to LA and shot my Tasty video, the Tasty video was released, I met the American Heart Association, I’m implementing the American Heart Challenge in my high school, and I went to Phoenix.
In fact, I think I impressed them so much that they invited me to the Stanford Gala. The Stanford Gala, as Lindsay explained to me, was a ball dedicated to raising funds and awareness for children with congenital heart disease. I was invited along with some other families, and it’s on November 9. I’m allowed to bring two guests, and my mom is one of them.
I have to wear formal attire, which kinda sucks. Blue jeans, white t-shirt, and a hat is my signature look. I look horrid in formal attire, but oh well I can’t control my genetics.
I looked at my emails and apparently there’s a virus outbreak at my school. I gave Donna the phone and she said to probably not go to school. Viral Gastroenteritis is a virus that makes you have explosive diarrhea, and I ain’t having that.
However, tomorrow’s a minimum day because it’s Halloween. I think I can handle that.
My Echo nurse came in.
I talked to my Echo nurse about Halloween. She’s supposed to dress like a troll from Toy Story 4 (I never saw a troll in Toy Story 4??) for Halloween at the hospital but then costumes were cancelled. But then the cancellation was cancelled.
I’m going to go as a tourist. All I need is a lei and sunglasses and boom I’m done. Super simple, easy, and almost little to no effort.
My Echo nurse really likes old movies, just like me. In fact, she recommended me to watch Sabrina which I for sure will now. The original Sabrina with Audrey Hepburn, not Sabrina the Teenage Witch with Salem the cat.
My nurse I had last biopsy also came in. She’s my Gone With the Wind nurse. I swear, she understands my obsession with that movie. She said her favorite dress was the red dress that Scarlett sensually wore to Ashley’s birthday party, but that’s nonsense. The best dress was the curtain dress Scarlett wore to see Rett. It was funny seeing her wobbly and tumbly wearing that dress.
After the Echo, I was done. I could go home.
My nurse took out the IV, and ouch. Again, anything needle related is horrible. Even if taking out the biopsy doesn’t involve needles, there’s literally a plastic tube inside of me. I am so glad I won’t have to use an IV again.
Anyways, I said goodbye to everybody. I said goodbye and went back home.
Today my mom and I visited Isa. I have wanted to visit Isa for the longest time EVER! Isa is my model and inspiration. I recently read her book “The Power of Two: A Twin Triumph over Cystic Fibrosis” and it couldn’t have come at a better time. I love Isa because she was born in 1972, 17 years before the gene mutation that causes cystic fibrosis was discovered. At the time her and Ana’s life expectancy was 10 years and Isa is now 52. If Isa can live until 52 when she was expected to live until 10, then I can also live a long life.
What inspires me so much about Isa and Ana’s story is that they not only survived with CF, they also thrived. I couldn’t have picked up this book at a better time because the same questions the book asks I’ve also been circulating in my head. How long do I have? Will this be forever? How do I deal with pain? Am I strong enough?
The strength that Isa and Ana have amazes me. I hope that I can have their wisdom and strength one day. I made Isa paper cranes because Isa currently has cancer. Cancer killed Ana in 2013 and I can’t imagine how Isa is feeling. I watched the TED talk Isa gave after Ana died and she said losing Ana was “the toughest battle of her life.” I was a little nervous to ask, but I did. I asked how Isa got through it and she said her husband Andrew, her friends, and art.
Today I visited Barbara Costerus with Miranda. Barbara is a kidney transplant recipient for 22 years and she is currently on hospice. She is amazing – she was on hospice for a year already and she is still here. Her hospice contract was renewed for another 2 months.
Barbara looked better than I expected. I met her and her husband Bart for the first time and what a horrible way to meet. However, anyone who has had a transplant for that long and survived is an inspiration. I told Barbara thank you for the inspiration she gives us.
Barbara told us about her life. She has two sons and both of them also had lupus. Her older son just passed away last year at 57 waiting for a kidney transplant. Barbara said it was hard, is hard. My mom says that grief manifests itself in physical ways. She thinks Isa has cancer because of the grief after her twin sister Ana passed away. Maybe that’s why Barbara is in hospice, because she can’t handle the pain of living after her son passed away. However, Barbara seems to be very determined to keep on living. She is frustrated that she can’t talk or contact her nephrologists or transplant doctors for advice. I mean, she was on hospice for a year and she’s still alive. However, her other son is doing well because he had a kidney transplant also around a year ago. That news delighted me so much.
After I visited Barbara I fought with Miranda. I said some things I shouldn’t have during the visit and Miranda pointed it out. I said “you’re so brave” because I did think she was brave! She’s staring death in the face and during the visit she’s asking questions about us, our transplant, and limiting the conversation to herself. I mean, if I was her, I’d probably be shitting myself, crying, moaning, complaining – being anything but graceful. How does Barbara maintain her composure in this time of crisis? Probably the most critical time of her life, the most acceptable time to be a crying mess, and she is a champ. She looks good too! She talked for us for 40 minutes. She is brave.
I snapped at Miranda. I yelled at her because she was listing off reasons that you shouldn’t say “you’re so brave” to someone in hospice and I said that I already felt bad enough it was like she was rubbing salt in the wound. Earlier, just after we finished the visit, I said I was sad. Miranda told me not to be sad because Barbara’s life is beautiful. She was able to live such a long life and death is not a natural part of life. I said that’s true, but it’s still sad. I mean, it’s okay to be sad visiting someone is hospice!
Miranda said she already accepted her own death. And then I said, are you for real? Because, like, are you for real? She’s 19. I’m 20. How could she accept her own death? She said that if she died tomorrow, it would be okay, because she already accpeted her own death.
For the first time ever, I saw the dark side of Miranda. I always thought I was the worrier, the paranoia, and the pessimist. Miranda was the optimist and reasoner. But now I was the optomist. I refused to accept my own death because I wasn’t going to die. Not now… not after everything we’ve been through. We need to fight with everything we have, even if the battles are long and hard.
The day before I made brownies with Miranda. That’s what I delivered to Barbara (along with bread). However, I forgot to give them to Miranda after we fought. So I cooled off walking my dog and just couldn’t in the middle. I collapsed in the park and literally sat limp in the grass. The visit affected me more than I realized. Then I drove to Bob Moss’ house and talked with him. He cheered me up because he’s always a good person. Then I drove to Miranda’s house, because it’s not far from Bob, and gave her the brownies. We hugged and mad up, although there wasn’t much to say. What can you say? These are scars we carry for life. The best we can do is eat our brownies and wait for the sun to rise again.
Today I met Camila in Hayward with Miranda. I met Camila at transplant camp in 2019. She reached out to me on IG and I am so happy she did because Oh my gosh! Am I so happy!
We first went to Jollibee and then we got cake at a nearby store. Then we talked in the car and then went to Target. We ended by going to get boba.
I realized how lucky I am to have Camila and Miranda in my life. Of course, Miranda is a blessing. She is my transplant best friend. We have exercised on FaceTime together during the pandemic, celebrated my NYU decision together, and visited Barbara on hospice together. But I have a strong feeling that Camila will also be someone I can call during hard times. She is also someone who had a heart transplant around the same time as me, same hospital as me, and same age as me.
We were walking around Target talking about things. Miranda looked at the baby food and said something about the liquid formulas she had to drink between the times she had the feeding tube in her nose. And Camila said like “yeah, those are disgusting” and I agreed because I also had to drink those nasty ass formulas too! And like… how amazing is it to have all three of us with the same experiences because we absolutely do not relate to 99.99% of the population. I mean, who else can I laugh with about formula and feeding tubes?
Miranda, Camila, me, and another boy named Roque were the “Four Musketeers” in Transplant Camp. I hope Roque is doing well. He’s somewhere near Redding, CA so that’s a three hour drive away. I told Camila we should visit Roque and kick his ass for not visiting us but Camila said he was too far 😩 One day Roque should drive down here so we can kick his ass over here – together!
Camila said we could all write a book. She would have 3 chapters, Miranda would have 3 chapters, and I would have 3 chapters. Miranda said she would need more than 3 chapters. I said the amount of trauma we have between the three of us is absolutely astronomical. It could fill a room!
I also said that we were not done writing our book because there are still pages we need to fill. We have so many pages left and we’re not halfway there yet. Camila is currently experiencing kidney rejection (she had a kidney and heart transplant) for a year now and I don’t know what to feel. I asked Miranda for advice and she said that she thought Camila was fine. Because when you think someone is fine, they are usually fine whereas if you think someone is not fine, they’re usually not fine. I wonder if I should start praying again so that I can pray for Camila. I want Camila to be okay because I need Camila to be okay. She is my fellow warrior and she has not finished writing her book.
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