Tag: Ronald McDonald House

June 26, 2018

~ Campjustin ~ Leave a comment

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.

July 2, 2018

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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

~ Campjustin ~ 1 Comment

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.

play-sharp-fill

July 4, 2018

~ Campjustin ~ 1 Comment

Today is the Fourth of July. Since I’m staying at the Ronald McDonald House, and not at my house in Pleasanton, we don’t really know what to do. I searched the internet, and I found that there’s a fireworks show at Seaport Boulevard in Redwood City.

Redwood City is nearby Palo Alto, the home of Stanford University. Seaport Boulevard is a boulevard that’s near the water, and there’s a private yacht dock along the boulevard.

My Mom drove me to Seaport Boulevard, but then she saw how wheelchair accessible the boulevard was, so she drove back to the Ronald McDonald House to get our grandma. Our grandma also needs special care, so she stays with us at the Ronald McDonald House.

We got takeout food in Downtown Palo Alto from Jing-Jing Szechwan & Hunan Gourmet. I first tasted Jing-Jing in the hospital after transplant. I didn’t have much of an appetite, but I wanted some noodles, so a nurse suggested Jing-Jing since they had great noodles. The hospital food was great, but after awhile it gets boring.

After we got takeout, we went to Seaport Boulevard with grandma. By the time we got there, the fireworks already started and all the cars were jammed. We decided to park outside, and watch the fireworks from the sidewalk. It was a great day.

July 6, 2018

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I also bought books, had a physical therapy appointment, and went to a bike shop.

Before my physical therapy appointment I bought books at Kepler’s Books in Menlo Park. Kepler’s Books is the bookstore I’ve mainly been going to when I’m staying at the Ronald McDonald House. I bought “The Empress” by S.J. Kincaid. I wanted to continue from the first book, “The Diabolic”, in her series because I liked how cunning the main & secondary character is and reading about the plot of toppling a powerful dictatorship. I also bought “The Testing” by Joelle Charbonneau because it combined The Hunger Games and the college application.

After buying books, I went to physical therapy. I talked to my physical therapist about how I was walking 20 minutes a day on the treadmill. I started walking 10 minutes, but then I gradually went to 20 minutes. I walk on 3.0 speed. I talked to her about running on the treadmill, and she told me if I was to run, I should do it on 4.0 speed. Moreover, I should be careful when running.

Last year I was sent to the hospital for leg cramps. My leg cramps were in my right and left calves, but they hurt devilishly awful. The doctors predicted that my blood thinning medication, Coumadin, interacted with my arrhythmia medication, Amiodarone, and caused swelling in my calves. Turns out amiodarone has a ton of side effects, so that sucks. After I was released from the hospital I was homeschooled for a month and a half before I could return. In site of not taking the medication anymore, my calves are still sensitive and will cramp after exercise.

My physical therapist asked how I was doing with my stretches. Before I left the hospital, they gave me a list of stretches to do everyday. I told her I was doing well with them, since I continue to follow their stretch everyday.

After my physical therapy appointment, I went swimming (see same post today). After swimming I went to a bike shop. My mom bought my bike from my house in Pleasanton to the Ronald McDonald House. I’ve outgrown that bike so we went to the bike shop to have it altered. At the bike shop they adjusted it, but my mom asked me if I wanted a new bike instead of my old bike. With a new bike I could bike faster and easier.

I told her no because I won’t be biking much in the Ronald McDonald House. I appreciate her offering though, a new bike is a lot of money! Since I want to focus on swimming and running, I don’t want to add the burden of biking. When I go home, I can start biking.

July 7, 2018

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My dad and Julia came to visit me today. Every Saturday my dad visits me at the Ronald McDonald House, and today he brought Julia, my sister. We went to Redwood City to watch Ant Man & the Wasp. Before the movie I bought a salad. I hate salad, but it’s one of 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

After we watched Ant Man & the Wasp we decided to drive along Seaport Blvd. We went to Seaport Blvd in Redwood City for Fourth of July (see July 4, 2018). My mom and I didn’t get to explore the boulevard that day, but it seemed pretty cool.

Seaport Blvd is a boulevard along the bay. It loops around, and in the loop are tons of office buildings. They have tons of areas to sit and watch the sea, which is pretty cool. We drove to a nearby private yacht dock to admire the scenery.

When we got back to the Ronald McDonald House we went across the street for dinner at the Stanford Mall. We ate at True Food Kitchen, a restaurant claiming to have “honest” food. The wait was terribly long, and the service was awfully slow.

July 10, 2018

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My Mom’s friends visited me at the Ronald McDonald House at Stanford today. They’re super nice. They’re also super intelligent. One is a physics professor that graduated from Cornell University and published many books. Another is an air pilot that critiques movies on Rotten Tomatoes, owns multiple vineyards, and her son is a graduate at Harvard doing community service in India.

July 10, 2018

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Today I had my physical therapy appointment.

After transplant, I had to do physical therapy everyday in the hospital. My physical therapy included stretches and walking around the hospital unit three times a day. Exercise was a LOT harder immediately after transplant than before transplant, but I knew that the more exercise I did, the faster I would be out of the hospital. So I walked around the hospital unit three times a day, and then four times a day. Then I walked around the entire hospital and played in their garden. My theory was right because I got out of the hospital about two and a half weeks.

If you remember 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

Exercising on the treadmill and walking 10,000 steps is part of my physical therapy, but everyday I also stretch with some stretches the physical therapists give me. Sometimes I swim, but I’ll do more of that once I get out of the Ronald McDonald House.

July 11, 2018

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Today my Mom and I decided to go swimming at the Palo Alto YMCA. Before transplant, I was too weak to even exercise. I tried to swim, but 10 laps was all I could handle in an hour. However, during transplant education they said I could be able to play sports once I had a new heart. Now that I have my heart transplant, I can finally swim.

We brought Orion (pseudonym), another patient at the Ronald McDonald House with us. They’re from Hawaii, and they’ve been at Stanford multiple times. Orion loves the feel of water because it loosens up his joints. Ever since his brain tumor, he’s gained weight that’s been putting pressure on his joints.

I tried swimming, but I didn’t have as much endurance as I hoped. Nonetheless, I feel that I can improve on my swimming. Also I’m only 2 months out of transplant, so I should still be in recovery.

I had a great time swimming with Orion today. The YMCA is much better than the Stanford University pool, which I used before. Since The YMCA is also an inside pool, I don’t need to worry about the sun and skin cancer.

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