June 21, 2018

Today Pixar came to the Ronald McDonald House. They’re showing The Incredibles 2 in the activity room. I watched The Incredibles 2 with Angela and Noah. Angela and I watched The Incredibles on Sunday to be prepared for the sequel (see June 17, 2018). Noah is my friend being treated for stomach cancer.

Angela had to leave halfway through the movie for her therapy, so it was just me an Noah. The activity director gave us a pixar bag with a pixar hat inside. After the movie, I waited in line to get a picture drawn by Pixar artists. I choose to get a drawing of Remy from Ratatouille.

June 22, 2018

My Mom and I walked to the Stanford theater today. The Stanford theater is a theater in Downtown Palo Alto that plays classic movies. Downtown Palo Alto isn’t far from the Ronald McDonald House.

Even though Downtown Palo Alto isn’t far from the Ronald McDonald House, it’s still a tiring walk for me. I have a sensation of heart pounding when I do any physical activity. Although it’s not as bad as it was in the hospital, it still inhibits me from doing a lot. I wore my pixar hat I got from the Ronald McDonald House (see June 21, 2018) to protect myself from the sun. After transplant, I’m also more vulnerable to skin cancer.

The Stanford theater has showtimes on their ticket booth and online. If you’re staying at the Ronald McDonald House at Stanford, I recommend you check them out. We watched the Royal Wedding at 7:30 PM. The Royal Wedding was released in 1951, so it’s pretty old.

June 23, 2018

Dad visited me today. Julia, my sister, also came. We decided to eat ramen at Downtown Palo Alto. Despite the ramen being good, I couldn’t eat it all. In the car I drank an entire protein shake so I felt nauseous.

These are my daily requirements:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

I set these requirements for myself after transplant so I can recover faster. I need to drink protein shakes because my doctor recommended me to eat more protein. I have a tube inside of me that I used before my heart transplant. Through the tube I would insert nutrient shakes (Nutren 2.0). After my heart transplant, I have an appetite so I can eat my entire day’s calories. If I stop using my tube for 6 months, I can have it removed.

My Dad drove us to California Avenue. California Avenue is where the Palo Alto farmers market is held. My Mom and I went to that farmer’s market and it seemed pretty cool (see June 3, 2018). California Avenue also has a Caltrain station. Caltrain is a public transport train in Palo Alto.

After we explored California Avenue, we dropped off Julia at the Stanford Mall. The Stanford Mall is across the Ronald McDonald House. She wanted to buy clothes at Urban Outfitters.

My Dad and I went to a bookstore in Menlo Park. Menlo Park is a city right next to Palo Alto. The bookstore is Kepler’s Books. We also bought drinks from a nearby cafe, Cafe Borrone.

When we went back to the Ronald McDonald, we met with Julia. We both went to Downtown Mountain View for dinner. Mountain View is farther away from Palo Alto, but their downtown is nice. Mountain View is the headquarters for Google, so you see a lot of young employees in Downtown Mountain View. We ate at an Indian restaurant.

June 24, 2018

Today there’s a Stanford run for kids. The Lucile Packard Children’s Hospital is hosting a 5k/10k run, and the money will go to the hospital.

I didn’t participate. My heart pounding is still very strong. In case you didn’t know, I have a heart pounding sensation after transplant when I do minor physical activity and my heart starts to heavily beat. I could walk as little as 100 ft and have to sit down. Also, I don’t have much endurance. After my transplant, my heart has to readjust to my body, and it hasn’t yet. I try to push my endurance often, but doing a 5k is too much.

My Mom did. She told me that she met the doctor that took care of me in the PCU (aka a doctor I can remember).

June 24, 2018

I walked with my mom to downtown Palo Alto today. The Ronald McDonald House is a challenging (for me) yet reasonable distance from Downtown Palo Alto. Since I need to build my endurance, I always take a chance to walk to Downtown Palo Alto.

We ate New Orleans food at NOLA in Downtown. I loved NOLA’s atmosphere and their food was great.

June 26, 2018

Today I watched the World Cup game Nigeria vs. Argentina. Argentina won. If I have to guess, I bet Argentina will win the 2018 World Cup.

Update: Lol, nevermind. France won.

I followed my strict regimen I developed:

  • Exercise at least 10 minutes walking on the treadmill
  • Ride at least 1 hour on the gym bike
  • Walk 10,000 steps (tracked by my Fitbit)
  • Eat a salad or another vegetable dish
  • Drink a protein shake

Following my regimen is important. It guarantees that once I get out of the Ronald McDonald house I’ll be able to have the capacity for normal activities (such as walking around school), it builds a basis for any sports I’ll want to play, and I can focus on eating enough food everyday.

A Make-A-Wish representative visited me today. Make-A-Wish is a non profit that provides “wishes” to children with critical illnesses. She asked me what I wanted for my wish. I don’t know.

I thought about putting solar panels on the roof of my house, but my Mom said that would be a waste of a wish. Then, on the spot, I got it! I would meet up with a chef to create multiple simple, healthy recipes I can eat. Throughout my life, I’ve had no appetite. I don’t eat enough everyday, so through my gastral tube I insert half of my calories. After transplant, I have an appetite so now I eat enough calories everyday. If I made recipes with a chef, it would help me eat normally.

The representative and my mom thought that’d be a great idea. They even said that I could format those recipes into a cookbook, and share it with other patients that have chronic illnesses. I’m really excited about this.

June 28, 2018

Julia, my sister, came to visit me today. We decided to watch a movie at the Stanford theater. The Stanford theater is a movie theater at Downtown Palo Alto that shows classic movies from the Golden Age of Hollywood.

We also asked Noah and his family to come with us. Noah is a 10-year-old boy also at the Ronald McDonald house. He has stomach cancer and is being treated with an experimental drug. Noah was pretty tired and his dad stayed with him, so his mom came.

Downtown Palo Alto is a reasonable distance from the Ronald McDonald House. Since I do need exercise everyday, it’s good that I’m walking. However, a patient without energy might not be able to walk the distance. Now that my heart pounding is less noticeable, it’s much easier for me.

At Downtown Palo Alto we ate at Lemonade, a health food restaurant. My sister also eats at lemonade at LA, so she likes the food there.

We watched Christmas in July. Christmas in July is about a guy being tricked by his co workers of winning a slogan contest. However, the owner of the company gives him the prize, without realizing he’s not the actual winner. When Christmas in July ended, we stayed for another move, The Gay Divorcee. The Gay Divorcee is about a women desperately trying to get a divorce, and she fakes cheating. Halfway through I got lost because there was so much singing and dancing and black and white.

My dad picked Julia from the movie theater. Otherwise, Julia would’ve had to stay the night with us at the Ronald McDonald House.

Noah’s mom liked the movies. She said it was nice that there’s so much fun stuff to do at Stanford.

July 2, 2018

One of the benefits of staying at the Ronald McDonald House is you get to know a lot of people. Of course you don’t want to be at the hospital, but if you’re a patient staying at the Ronald McDonald House instead of the hospital then you can have fun. My most popular way to meet people is just sit in the community dining room and read. People will automatically come up to you if you look open.

People are surprised to know I’m the patient. They said I look so healthy, since I’m not in a wheelchair, have IV tubes sticking out, or extremely skinny. Someone even said they thought the patient was my grandma, and not me. That’s so good!

The people you meet and their stories are amazing. They’re inspirational but sad. A 10 year old girl has 10 open heart surgeries. A 14 year old girl with leukemia and went through different types of painful chemotherapy. A guy with a stem cell transplant that needs to stay at the Ronald McDonald House for 6 months (twice my required stay for heart transplant). A 10 month old girl with heart and brain damages. These are just a few.

When I was reading my book at the community dining room, I talked to Joe and another person at the same time. Joe is the dad of Nicole (see September 20, 2018), a girl who shortly came into the hospital after I left. This is Nicole’s 5th open heart surgery to replace her right artery. Her right artery was replaced with a mechanical one, and as she grows up her heart grows too, so the artery needs to be replaced. When she didn’t wake up, that was the sign that things were wrong.

I also talked to a nanny of a patient. That patient has been at Stanford last year for leukemia, and for the Fourth of July she was wheeled onto the Lucile Packard Children’s Hospital roof; from there she watched the fireworks. She’s been through many painful treatments, and now they’re trying a bone marrow transplant. Before she gets a bone marrow transplant, she needs to go through conditioning. Conditioning was supposed to be finished in November, but it’s now July. The nanny shaved off all her hair to support the patient.

The nanny also has health conditions. She has multiple strokes, so she needs to go through painful treatments to control them. When she went to a doctor in San Francisco, she had to bend over and they inserted a needle into her spine to place an IV. It wasn’t done well, so she had to bend over two times.

It’s a sad world inside the hospital.When you’re around so many sick people, you also become sad.

July 3, 2018

Today is Kayano’s 15th birthday! Kayano is a patient at Stanford, who’s also my next door neighbor at Ronald McDonald. Kayano has kidney failure and he needs to be put on dialysis until he’s healthy enough to be put on the kidney transplant list. Kayano is having less and less energy, so he needs his kidney transplant soon.

We went to Redwood City Downtown to watch a movie. Kayano doesn’t eat food, but he still buys popcorn. He licks the popcorn. After we watched the movie, Kayano’s mom wanted to get birthday decorations at Safeway. As we drove along El Camino Real, Kayano’s mom told us she never knew that Stanford had so many attractions. She thought Stanford was in the middle of nowhere.

When we got back to the Ronald McDonald House we celebrated his birthday in the community dining room. Yesterday Kayano’s mom cooked brownies. We stuck 15 candles into the brownies and Kayano blew them out. Kayano’s mom also bought ice cream at Safeway, so she served the brownies with ice cream.