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It’s weird being back at home. Being at the hospital sucked, but somehow I have nostalgia about it.
For one, I have my own room. I’m glad to have my own place to sleep and scroll through my room. Secondly, there’s no people around. At the Ronald McDonald House there were always people around in the kitchen or TV room. Thirdly, I have nothing to do. Unlike the Ronald McDonald House, Pleasanton’s downtown or mall isn’t walking distance away. Instead I just play games on my phone or watch The Office.
Noah’s family from the Ronald McDonald House mailed a package that arrived at my house today. Noah is an 8 year old boy that just started 4th grade. He’s smart for his age; he skipped 3rd grade. He was brought to Stanford for an experimental drug to treat his stomach cancer. After being on the treatment, his tumor was reduced by over a half in a month. “It was a miracle drug,” his parents said.
Inside the package was an Arizona T-shirt (they live in Arizona) and a Fire 7. His parents know I like reading, so they thought the Fire 7 could be used to save some trees. It was really thoughtful of them! Today, I wore their Arizona T-Shirt when going back to school shopping.
Later in the day I went for a general doctor appointment with my general practitioner. Everything checked out, and I don’t need any shots.
I also saw my doctor for the first time after transplant today. He is my cardiologist at Kaiser before my heart transplant. He’s the person that pushed me in the direction towards transplant.
When my Mom told me in the car that I needed a heart transplant, she said that she and him have been talking about it for several months.
Today I went to Make-A-Wish headquarters in Oakland. At 7 AM my Mom drove us to Oakland’s Chinatown to park our car. First we went to a local bakery to buy some breakfast and take my medicine.
Afterwards we went to the Bay Area Make-A-Wish headquarters. The headquarters is in an office building shared with other companies. After getting directions by security, we went inside these huge double doors. The first thing you see is Make-A-Wish Greater Bay Area behind the reception desk. The walls were painted light blue and the floor was blue carpet. The waiting area featured books that had pictures of other people’s wishes on there.
Beth was excited to see me! Beth is the Make-A-Wish coordinator that plans out all the wishes. At the Ronald McDonald house she called me to figure out more details. Beth told me the headquarters used to be at San Francisco, but then moved to Oakland. She also told me that the headquarters usually don’t have kids visiting. Usually the kids are at the hospital or at home, so me coming was rare.
Beth, my Mom, and I walked past portraits of other children with their wishes. There’s actually a girl who made a fashion runway show. She’s also a heart transplant recipient.
Edit: I met her August 11, 2018, at the transplant reunion party! She’s in the middle wearing a blue shirt:
Victoria, the chef granting my wish, came from Bart. She’s a nutritionist and personal chef that creates healthy meals for others. She said when she was a child, her aunt had a heart attack in front of her and died. That’s when Victoria teared up. One day, Victoria quit her job and went to culinary school. Since then she’s been a successful personal chef. Her goal is to show people a healthier way of eating.
I explained why I wanted to do this. I have a tube inside of me. Before transplant, I didn’t eat enough food each day, so through the tube I insert food inside of me. I would plug my tube to a machine and go to sleep. The next day I would skip breakfast, eat a light lunch and dinner, plug myself in, and repeat. After transplant, I have an appetite. I can start eating full meals every day. I want to develop recipes so that I’ll have enough food to not use my tube anymore. If I eat without my tube for 6 months, then my doctors can take it out.
My Mom, Victoria, Beth, and I went to take a picture in front of the Make-A-Wish logo.
Victoria will meet up with my Mom and me at our own house for cooking lessons (see August 25, 2018).
My Mom and I also checked out a government building nearby. Pictures above!
Today was the Transplant Reunion Party. The Transplant Reunion Party is an annual gathering of organ recipients hosted by Lucile Packard Children’s Hospital at the Stanford Alumni Center. I got to meet people just like me!
When I arrived, there was a booth that awarded transplant patients with a medal saying “Your Type Of Organ Transplant Recipient”. Mine said Heart Transplant Recipient. They were shocked when I said I was only 4 months out of transplant. When I asked what organization they were, I became the one shocked. They were a club from my very own high school! More specifically the Pink Dot Club from Foothill High School.
Maddy, the club president, said her cousin died while waiting for a heart transplant, and that’s why she started the Pink Dot Club. Its motto is to raise awareness for organ transplant, and hopefully inspire people to become donors.
Discovering this club was so amazing because now there’s an entire club at school that understands my struggles. Once I start school, I’ll definitely be an advocate for them.
I was pulled aside during our conversation because there was another heart transplant patient speaking. This guy was younger than me, probably 10 years old. He had his transplant in March, not much shorter than I did.
His mom was starting to tear up. She described him being in the hospital and how hard it was. As any mother would, him suffering was also her suffering. When she got the call for the transplant, they were both so excited. It would be a new birthday! He had to be airlifted to the hospital, but he said he liked the helicopter ride. After transplant, he didn’t have to stay in the hospital anymore. His heart failure was over. He could now be a normal boy. They thanked Lucile Packard for their wonderful care, because all the nurses and doctors gave him wonderful support.
After his speech, I met with him and another girl. He’s a really nice guy! He appreciates his new heart everyday. I learned he also likes to swim. His mom was nice too. He’s really lucky to have a mom so well spoken that loves him so much.
The girl was another heart recipient. She was the girl at Make-A-Wish that made a fashion runway show (see August 9, 2018). She had her transplant when she was 1. She was put on the list and had the transplant within 24 hours (24 HOURS! Wow) of each other. At 11 years old, she’s doing volleyball, cross country, and gymnastics. She’s a normal athlete, and that’s awesome. I hope in the future I can be an athlete. She told me that because of my new heart, I can go to Transplant Camp, a camp where the only campers allowed are transplant patients under 18.
I then gave my social worker my letter to the donor family. My social worker spoke to me earlier about reaching out through a letter, so I spent last night writing it. I hope they’ll want to reach out too. I’d love to meet them.
Another person I met was Lizzy Craze. Lizzy Craze is pretty impressive.
She is the only heart transplant recipient in America, and likely the world, to survive 30 years with the same donor heart she received as a toddler… Lizzy was the youngest successful heart transplant recipient at the time of her transplant.Stanford Children’s Health
Today she runs marathons and participates in triathlons. I told her of my dream to run, bike, and swim. She told me with my new heart all I needed to do was train.
Maddy, the club president for the Pink Dot Club came to return my medal. Together with the girl (the boy was out of sight) we decided to do some activities together. It was really fun experience. We colored plain converse shoes with rainbow sharpies and brushed thick paper with luscious amounts of paint. At the end of the Party, we exchanged numbers. The girl promised me to send a link to the Transplant Camp. Maddy and I will be working together on the Pink Dot Club. We’ll also see each other in school.
Outside of the Stanford Alumni Center, my mom and I ate sandwiches under the tree. She asked me “Did you have a good time?” I answered “Definitely.”
Today was the first day of school. It was awful.
I go to Foothill High School, a competitive High School in California. As you pass through the hallways, you can hear people gossiping about homework, test answers, and teachers. The environment is so competitive, that school becomes a student’s life.
At school, I tried explaining my story to one of my trusted classmates today and all they said was “That’d make a great college essay!”
One of the things my transplant education didn’t warn me was that after transplant I had a new perspective on life. I can’t look at my classmates, my school, or my life the same way as before. I realize, unless they went through the same thing I did, they won’t emphasize with me.
I think I can compare this to military veterans. I am not saying that I’m the same or better than a military veteran, just that we can be similar in an aspect. After a veteran from the military is discharged, they can’t view life the same way as before. They’ve seen too much war, too much sadness in life and cruelty in humanity to adjust back into society.
Personally, being in the Ronald McDonald house and constantly being around sick people made me realize the unfairness in life. I don’t know how to adjust from a hospital setting back into a normal setting. Do I try to shove this new perspective away, or continue to acknowledge it?
As I passed from class to class, I realized I couldn’t relate with my classmates anymore. When asked “What did you do over the summer?” I just said “Stayed at home.” I knew that if I said “at the hospital” it would just make them uncomfortable.
Transitioning back to normal life is hard, but all I need is a group of people that’ll understand me. My comfort will be there.
Today is my second session with Victoria, however this will be the first time we’re cooking. Victoria is the chef that’s granting my Make-A-Wish (see August 9, 2018). Her son also came today. He’s a marketing major and is helping Make-A-Wish by taking videos of us cooking. We’re making seared salmon and pancit.
For the seared salmon we rubbed the salmon fillet with garlic and dill. We seared both sides until they were pink. If they’re the slightest raw then I get a chance of catching a virus. My Mom was shocked by how simple it was.
The noodles for the pancit was soaked in water until they became soft. We fried frozen shrimp and cabbage strands in a pan, then added the noodles. We seasoned the noodles with soy sauce, sesame oil, and dill.
Check out Victoria here: https://www.eastbayhealthychef.com/
I had my biopsy today. A biopsy is a procedure to get a sample of tissue from your muscle. For me, they’re getting a sample of my heart tissue to test how much rejection I have.
I met Kayano’s mom at the hospital lobby. Kayano was my next door neighbor at the Ronald McDonald House. I hung out with him a few times and celebrated his birthday with him. Kayano has severe kidney failure, and has to be put on dialysis before he can be accepted on the transplant list.
Kayano is currently at the Lucile Packard children’s Hospital school. Kayano’s mom says the hospital school is super easy, but when I was at the hospital school it was hard to catch up with my classes at Foothill. Koda, Kayao’s little brother, is at the public elementary school in Palo Alto. The Palo Alto District is supposedly one of the best public school districts in the country.
I used less anesthesia this time, so I was awake during the biopsy. Surprisingly, it wasn’t painful. There was just pressure. Instead of crying out in pain, I just laughed.
Before I could be discharged the doctors examined me. They told me my prograf levels were good, and my medications would stay the same. I was happy with how the biopsy went. However, I can’t swim for a week in case the wound gets infected.