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 5, 2019

I took the appetite pill for the first time today.

When I visited the G-tune doctor on December 12, 2019, he said that I needed to gain 10 pounds by March.

He prescribed me appetite pills, but I never took them.

Why?

I feel that I can gain weight without having to take medication. I mean, anything is possible, right?

Well my Mom obviously thinks I can’t, so I took my appetite pills today.

January 10, 2019

Someone from my school’s yearbook team interviewed me today.

Her name is Arushi Avachat. She was, like, super professional. She’d make an awesome journalist.

My school will include me in their yearbook. Woohoo! They’ll give me two pages about my heart transplant and my blog.

I met Arushi during study hall. Study hall is pretty new to my school, and it’s kinda meh.

First she asked me questions about my condition, and what led to my heart transplant (If you also want to know visit About Me). Then she asked me questions about my blog. Who do I hope to reach, what is my message, and why I did it.

I think a question that caught me off guard was when Arushi asked me what I wanted people to know about me.

I answered that I wanted people to know that there was more to me than my heart transplant.

But is that true?

I mean, what other qualities do I have other than as someone who had a heart transplant? Other than my heart transplant, how exactly am I unique?

In the hospital before my heart transplant, I met other people and their only defining trait was their condition. I was afraid of becoming one of them, and guess what? I’m one of them.

I think that scares me. My life revolved around my heart transplant, and it still does.

I literally have a blog about it!

How do I move on?

Should I move on?

Oh! A fun fact! I didn’t write all these journal entries at their assigned date. I was WAY too uncomfortable in the hospital to write anything. However, my Mom took tons of pictures, so I just went back to the pictures to remember every thought, memory, and feeling.

It’s actually great that my blog will be in the yearbook. I really need exposure. I think the most views I got in a day so far was 8.

So yeah.

Woohoo! Yearbook!

March 29, 2019

Today I had another doctor’s appointment at Lucile Packard.

I woke up early today to get my blood drawn at the nearby Kaiser. Yesterday I took my medication at 9 PM so I could draw my blood at 8:30 AM.

Once my blood was drawn, my Mom drove us to Stanford. My appointment was at 10:30, so we arrived just on time.

First is echo, then the EKG, and lastly clinic (checkup) with the doctors.

During the echo, I was watching Bones. Bones is so cliche, it hurts. Why is Finn the most stereotypical southern character ever?

Shucks, I haven’t seen this much ash since my family BBQ!

(roughly quoted) (while sifting cremated remains)

Lol, okay.

Anyways, after the echo was the EKG. The EKG was very short, as always, but easy.

We updated the doctor at clinic about everything, and they said I was doing great!

Then we went to eat at the hospital cafeteria:

March 30, 2019

Today I had another personal training lesson.

I was kinda sick this week so I didn’t do any land exercise, aka I didn’t do any of my homework.

Of course, the exercise was painful. It’s okay though because it wasn’t as bad as March 2, 2019. Plus, pain is required for exercise.

The hardest part of personal training is that they always push you, so you don’t have time to rest. That’s why I feel better exercising on my own, and I get to listen to music.

After jump squats and lunges, I’m sore so I don’t perform well with other stuff. Oh well.

¯\_(ツ)_/¯

Honestly, I’m trash at push ups. Today we focused on push ups and I was so bad that we had to modify it by putting my knees on the ground. Lol.

The most fun part was doing this kung fu, martial art, butt squat thing. That was a fun exercise.

My Mom picked me up from the gym after my lesson. She’s training for another triathlon, so she couldn’t send me to the gym.

I bought some food from the gym: Toni’s high performance hot protein meal bowl (glorified oatmeal) and a banana muffin. Turns out the banana muffin had walnuts, and I’m allergic to walnuts.

I really shouldn’t call it an allergy, it’s more like a sensitivity. All walnuts do is give me Kylie Jenner lips, which is actually kinda cool.

Maybe it’s a blessing? 🤔 Many girls would kill for this.

Anyways, I shouldn’t have ate that banana muffin because I felt a little bad for the next few hours. I don’t use an EpiPen because I don’t need it.

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 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.

August 29, 2019 – Filming with Ivanhoe

Today I filmed with Ivanhoe Broadcast News. Ivanhoe Broadcast News is a news station that provides medical and health news to network affiliates (ABC/NBC/CBS) around the country. The segments run 1-1.5 minutes and usually air on local stations a few months after filming takes place.

My mom cleaned up the house a few hours before they arrived. We were expecting them to arrive about 7~8 PM, but they arrived at 9 PM. I can understand, because the traffic from Palo Alto (Lucile Packard at Stanford) to Pleansanton is insane.

They set up in the living room. I watched as they pulled out the lights, reflectors, and cameras all for a simple interview. 

As usual, they had me go in front of the camera and say my name, and then they started asking me their questions.

I always make sure to emphasize how much I appreciated my donor, how important is to be an organ donor, and how easy it is to register to be a donor.

It’s so important that people register to become organ donors. The matter of the fact is, the people who sign up to be organ donors will likely never even become organ donors. You have a higher chance of getting struck by lightning than becoming an organ donor. 

My mom went after me. She had some really touching stories about myself in the hospital, and I always appreciate how much she’s done for me.

We shot b-roll (background shots) in the kitchen. My mom and I cooked my signature chow-mein recipe while they filmed. Later we shot our second b-roll in my bedroom working on my blog.

I can’t wait to see how it turns out!

July 1, 2020 – Annual Study

Today I had my annual study. My annual study is my biopsy, but more comprehensive because it’s done to evaluate my heart’s function at the end of the year. It was initially scheduled for April, but because of the coronavirus, it’s been rescheduled to today.

Miranda, my friend from transplant camp, told me about her biopsy experience. She had to get a coronavirus test two weeks before the procedure. The doctors at Lucile Packard are really cautious about COVID19.

On June 24, I waited for the coronavirus test. Luckily, they’ve advanced testing so it wasn’t two weeks before. We awoke early and drove in line about 30 minutes earlier because the tests at Alameda County Fairgrounds usually run out pretty fast.

“The test was like a feeding tube, but better,” Miranda told me. That’s what I thought about when the doctor put a test up my nose. It wasn’t that bad, but it did make me cry. I think it’s reflexive to cry, but luckily it wasn’t for that long; it only had to swab for 10 seconds. Overall, it was okay.

Today I drove to Lucile Packard. I don’t have my license yet (thank you coronavirus for closing all the DMVs), but I did have my permit. It was my first ever time driving to Palo Alto, which was a nice drive. The Dumbarton Bridge was also not as hard as I expected.

The first thing they do when you enter is check your temperature. Of course, temperature isn’t always the holy grail since people can be asymptomatic. They also require masks and hand sanitizer. 

It was so nice seeing all the nice nurses in the short stay unit. Especially since they’re all super sweet, I’m glad they’re all doing well and staying safe.

We kind of got into the swing of things. The Cath Lab was ahead of schedule, so I changed into my hospital gown, got an IV (ow), and had anesthetic put on my groin (point of entry). They took some blood from the IV but I already had a blood draw earlier in the day. Did you know they’re not taking Prograf times anymore?

I was wheeled down to the Cath Lab, and then everything started. This time, since the annual study is more comprehensive than a biopsy, I did get the same amount of happy juice as last time. Anesthesia is great. I love the feeling of being high.

Another thing was everyone was wearing masks, even me. During the procedure, I didn’t notice the poking and shifting as much since I was high, but it was there. 

You have to lie down (can’t even raise your head) for six hours. I was asleep for two hours, but that still left four hours passing by. I talked to my mom and watched Back to the Future.

I was sad to learn from Lindsay that today was my last biopsy. I didn’t even get to say goodbye to the biopsy team 🙁 Since I turn 18 in October, I’ll be transferred to Kaiser and won’t be a pediatric patient anymore.

Lindsay told me that a few pediatric heart transplant recipients did contract COVID19, but luckily they recovered. That was good news, but I forgot to ask about the long term effects. I’m really glad I transferred to James Madison High School. At the time, Foothill couldn’t be bothered to move to distance learning. Once I saw “First death in the United States from coronavirus,” I was like I have to go.

My blood pressure today was higher than normal. Usually I like to be under 120/80, but today they were above that. That’s still in the normal range, but for me that’s not ideal.

After I was discharged, I couldn’t even walk. My groin was so sore, and I had to be wheeled on a wheelchair. 

The lobby of the hospital was emptier than usual. Probably because of the coronavirus, but it’s not like the hospital was a great place to be in the first place.

I was wheeled to the cafeteria and ate my meal outside. Afterwards, my mom drove back home to Pleasanton. My next appointment is in September.

Mother’s Dream

Today, we received text message from Megan – Nolan’s mom. Starting with a sweet picture on Jeff’s phone, so nice Megan shared with us. It brought sweet memories of summer 2018 in RMH where Nolan under treatment. We knew Nolan had some setbacks, Megan updated his status quo. Nolan was in hospital on Christmas morning where they discovered a new brain tumor. They fought to get him back on Larotrectinib and it seems to be working really well for him. All of his symptoms have disappeared and he feels great! It has been such a long and crazy journey. Now Nolan is happy to be doing school at home and he does see a few of his friends at local park. Megan is finally able to work on cleaning out closets and doing projects around the house. For years they were travelling between home and hospitals. It is quite a luxury and feels good to be home and have this time to do these daily routines.

Here is Megan’s words about Mother’s dream

We feel confident that Nolan will get past this, it’s just taking some time. We’re working on it from many angles so hopefully we can one day be free of this whole situation!! Perhaps Nolan will go on to inspire or help others to overcome cancer one day. Who knows. As long as you guys are healthy, happy and doing something that feels meaningful and brings you joy… that’s a Mother’s dream!!!

We are praying that 2021 will make up for 2020… lol