"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
My Mom showed me a post on FaceBook by Camp Taylor. Camp Taylor is a non profit summer camp for kids with heart diseases. Camp Taylor posted about Nicole who’s having trouble after surgery (see September 20, 2018). Her blood pressure is too low and her heart rate is too high.
My church family visited me. Since today is Sunday, they came after church ended. I’m not radically Christian, but after all that has happened, I do believe miracles happened (see June 13, 2018). My church family was really supportive of my heart transplant.
I also met Joe today. Joe is the father of Nicole. Camp Taylor posted about Nicole (see June 5, 2018). Nicole is in the hospital after complications after her 5th open heart surgery (see September 20, 2018).
Joe is a chef. He had a fast casual teriyaki restaurant chain in Southern California. He built his first restaurant by hand at 18. When Nicole asked her dad to be with him, he sold his restaurant chain to have more time with his daughter. Being in the hospital is a challenge, so you need to have as much support as possible.
Joe and Nicole have place their faith on God. They’re both radical believers. Although Nicole is 8, she has a boyfriend: her pastor’s son. Nicole is loved by God, and she is supported by her church family. When Nicole was in the hospital, her church family went in a circle prayed for her.
Angela and I made chocolate chip cookies today. Angela is my friend at the Ronald McDonald House. Cooking is a good way for me to push my endurance. We both made chocolate chip cookies, but there were extra chocolate chips so Angela’s mom made some modified cookies. After our chocolate chip cookies were done baking, we shared it with the other families at the Ronald McDonald House.
Joe made lobster rolls today. Joe’s daughter, Nicole, is in the hospital after her 5th open heart surgery had complications (see September 20, 2018). As a result, her family has to stay at the Ronald McDonald House while she’s being treated.
I helped him make them. After the lobster was done cooking, he tasted them, and found out they went bad. Joe had to drive back to the store to buy shrimp for the rolls instead. It was fun making food with Joe.
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.
Today Nicole’s dad prepared a meal for her church family. Nicole is a girl that’s been in the hospital since May. She was born with a non functioning right artery, and ever since she’s had to replace it with a mechanical one. This was her fifth open heart surgery, but after complications, she’s still in the hospital. Hopefully she gets out soon (see September 20, 2018).
Nicole’s dad is a chef. He built his first restaurant at 18, and started his own restaurant chains. However, when Nicole got sick, she asked for her dad to be with her. He sold his restaurant chains and left Los Angeles just to stay with Nicole.
Every Saturday my Dad visits me at the Ronald McDonald House. He takes me out to have fun for the entire day. Downtown Palo Alto is a walkable distance from the Ronald McDonald House, and at Downtown Palo Alto is a Caltrain station. Today we took Caltrain to Sunnyvale.
We got to the Caltrain station an hour earlier than the next departure, so we decided to get drinks at a cafe in Downtown Palo Alto. Downtown Palo Alto has a lot of restaurants to enjoy, and their own Stanford theater (see July 20, 2018). There’s a famous restaurant, Ramen Nagi, at Downtown Palo Alto (see July 17, 2018). From the Ronald McDonald House to Downtown Palo Alto is wheelchair accessible.
We took the train to Sunnyvale. There’s steps to board the train if you decide to take it. Since I have to stay at the Ronald McDonald House for 3 months, I want to make the most out of my time. I loved watching the passing scenery.
Downtown Sunnyvale isn’t as big as Downtown Palo Alto. Notwithstanding it’s still very impressive. Across the Downtown Sunnyvale Caltrain station is an impressive plaza. Downtown Sunnyvale also has a street that’s called the Historic Murphy Avenue, and it’s extremely beautiful. It reminds me of Downtown Mountain View. You can also check out that place with Caltrain.
Going from Downtown Sunnyvale we took Caltrain back to Downtown Menlo Park. At Downtown Menlo Park I bought a book from Kepler’s Books. The book I bought was The Testing, a book about an intense college competition after the apocalypse. It’s similar to The Hunger Games; teenagers fight each other for a better life.
From Downtown Menlo Park we walked back to the Ronald McDonald House. I was so glad to be back because I walked a lot. I needed to rest for a while. Last year I was in the hospital for a week for calf pain. Ever since then I take Tylenol when my calf pain flares up. Today was a strenuous day, so I took tylenol. I ate my dinner at the Ronald McDonald House.
Today is my doctors appointment. In the waiting area we saw someone from the Ronald McDonald House. She’s a toddler that had her heart transplant shortly after me. We met her at the Hospital Prom. She’s doing really well.
After my appointment, we saw Nicole (see September 20, 2018). Nicole is a 10 year old girl that’s been in the hospital since May. This is her 5th open heart surgery, but after kidney complications and a stroke she’s still in the Intensive Care Unit.
In the room next to Nicole was Jessica (see September 28, 2018). Jessica is a girl that’s also been in the hospital since May waiting for her heart transplant. In the Ronald McDonald house I met her grandmother. I told Jessica about my transplant, and life after transplant.
Today was a Pink Dot Club meeting. Pink Dot Club is a club on my school that raises awareness for transplant. I met them at the transplant reunion party (see August 11, 2018).
We wrote cards to patients in the hospital. I made cards specifically to Nicole, the 10 year old girl in the hospital since May (see September 20, 2018) and Jessica (pseudonym). I’m going to donate the cards the next time I go to the hospital.
Nicole died today.
Nicole is a 10 year old girl battling heart failure and she’s been in the hospital since May. She was born with a non functioning right artery. As a result, she needed to replace her artery with a mechanical one. As she grows up, her heart grows too and she needs her artery replaced, thus this being her 5th open heart surgery.
In summary of her hospital stay, she didn’t wake up immediately from surgery. After she woke up, her kidneys started to fail, She had to be placed on dialysis. After that she had a stroke. The left side of her was completely paralyzed. As a last option, she was placed on the heart transplant list. She was monitored relentlessly by the doctors, but after her code blue today she didn’t make it. A code blue is an emergency situation announced in a hospital of a person in cardiac arrest.
Nicole’s dad owned multiple restaurant chains. At age 18, he built his own restaurant with his own hands. When Nicole asked him to be with her, he sold his restaurant chains and moved in to her city. Nicole’s sister suffered too. When she was offered to stay with her grandparents she said, “No. I want to be with Nicole.” Nicole was only 10, but she already had a boyfriend. He was the son of the pastor. Nicole was a devout Christian. Everyone in her town knew her, and her town’s church group stood in a circle for an hour praying to her. Tw days before today Nicole changed her name to Nicole Faith. The first thing her dad posted on FaceBook was “Nicole got her wings today”.
The worst my Mom and I thought Nicole would be is half crippled. We never expected her to pass. Next time at Stanford, Nicole won’t be in her room. She’ll be in a casket. In her room will be another patient.
You can help. 6,775 people die each day in the United States. If every one of them was an organ donor, Nicole would’ve been saved. Please register to become an organ donor. An inconvenience of a few clicks can save someone else’s life.
Follow the steps, and you can save another Nicole.
Victoria came, and we made spaghetti squash with brussel sprouts and Singaporean noodles today. In case you don’t know, Victoria is a chef that’s granting wish. Together, we’re going to create a cookbook.
I told Victoria about Nicole, and Victoria said people like Nicole, people with medical disabilities, is why she’s doing this. Victoria said condolences.
Victoria showed us how to cut a spaghetti squash in half. At the same time, we quartered the brussel sprouts. We rubbed both the spaghetti squash and brussel sprouts with olive oil, Italian seasoning, and garlic powder. They were roasted in the oven. Then we sauteed ground turkey in a pan. Spaghetti sauce was added with the turkey, and we let it simmer. After the brussel sprouts and spaghetti squash were done roasting, we were able to scoop out spaghetti strands from the squash. The strands were plated with the simmered sauce on top and sprinkled with brussel sprouts.
There’s a lot of ingredients for Singaporean noodles. There are prawns, rice noodles, bean sprouts, chicken, soy sauce, tomatoes. The rice noodles are soaked in water while the prawns and chicken are marinated in soy sauce. After they’re marinate, the prawns are sauteed in a pan. Then the chicken are sauteed. The noodles are added in the pan. The noodles are seasoned with curry powder, soy sauce, and sesame oil. Tomatoes are incorporated. Sprinkled on top are bean sprouts and green onion.
Check out Victoria: https://www.eastbayhealthychef.com/
Today was my doctor appointment. At 7 AM I woke up and got into the car. I slept on the whole ride to Stanford, except waking up to take my medicine.
I remembered to grab the cards we made at the Pink Dot Club meeting (see September 18, 2018). After putting on my mask, we went to my appointment.
After my echo, which is an ultrasound (the ones the doctors use to take pictures of babies in their womb) of the heart, we were told to wait outside. After a room was available, we quickly went inside.
The doctor examined me and told me the results were good. My Prograf levels were good, and they didn’t change anything. I talked to the doctors about my leg pain. Last year, I was hospitalized for extreme calf pain. After being discharged from the hospital, I had to be homeschooled for a month before I was able to walk around my school again. My mom expressed concern about it being from my hypereosinophilic syndrome, a blood disorder I contracted leading to my heart failure. The doctors told us to book an appointment with the doctor that deals with my hypereosinophilic syndrome (see October 16, 2018).
After the appointment, we delivered the cards. We went to the Cardiovascular ICU (Intensive Care Unit is where patients are admitted when they have a serious illness that needs constant monitoring) and delivered as many cards as we could. We also saw Jessica (pseudonym) and delivered her card. We couldn’t say hi because she was too busy with her VR game. Nicole’s room was empty.
The rest of the cards we donated to the Family Resource Center. The Family Resource Center is a department in the hospital that allows patients to rent games, movies, books, or is a place for families to relax or get work done. It’s where I rented the Mission Impossible series, Lord of the Rings trilogy, the Avengers series, the Captain America series, Matilda, Tom and Jerry, and other movies.
Later that day I had a swimming lesson at 4:30. I’m still a beginner at swimming, but I know I have the ability to get better. After transplant, I can even be on my High School’s swim team! After swimming, we met up with Joanna and Andrew (see June 16, 2018) for ramen.