Today was the Pink Dot Club’s first meeting. The classroom was packed; there were probably about 40-50 people there. Maddy, the club president, introduced the club’s motto: to raise awareness for organ transplant. We also did a Kahoot, which is a trivia game, about transplant. I got 15th place (oops).
Category: Home
September 6, 2018
Noah came to Stanford this weekend. Noah is a 10 year old boy I met at the Ronald McDonald house that was receiving an experimental drug for his stomach cancer. Nolan and I send each other gifts (see August 7, 2018).
After school, my mom and I drove from Pleasanton to Stanford. We met Nolan at a seafood restaurant. His mom was so excited to see me. Nolan had to draw a lot of blood so he was pretty tired. He almost fell asleep while eating his food.
His mom told us that Nolan’s tumor has shrunk so much, that they might surgically remove it. However, they told me that the medication might work so well that the tumor might go away on its own.
They said that the care at the Stanford hospital was exceptional. At Phoenix Children’s Hospital the nurses didn’t give great care. The tumor was on Nolan’s back, so his parents explained not to touch his back. However when he went in for his CT scan, the nurses grabbed him on his back. Noah screamed out in pain. At Stanford’s hospital the nurses and doctors spent a half hour trying to work out the logistics for the CT scan. Where the pillow would go, where to position his back, how to transfer him on the bed. This is because the nurses at Stanford have to go through 7 rounds of interviews before being hired. Their care is exceptional.
After eating, we went to a Starbucks restaurant at Town & Village, a plaza in Palo Alto. Nolan also got gelato from a nearby shop. Nolan is doing great at his elementary school. He skipped a grade so he’s in 4th grade instead of 3rd. His teacher is actually a friend of his mom. His mom explained to the teacher about what happened. He has special accommodations, for example, he doesn’t participate in PE. Instead, he helps the teacher carry basketballs, We talked to his mom about a 504 plan.
Nolan’s parents said it was really lucky that I had my Mom. My Mom cares about me a lot, that’s why she brought me here today.
After saying goodbye, we drove back home.
September 8, 2018
Another cooking day with Victoria! Victoria is the chef that’s granting my wish from Make-A-Wish. Today we made green onion pancake, steamed broccoli, and a pasta salad.
The green onion pancake is a recipe my grandma knows. Since we didn’t use any yeast, the green onion pancake wasn’t easy to make. We made a dough with flour and water, and mixed green onion and salt in the dough. We rolled the pancake in circles, then fried them.
For the steamed broccoli, we put a small amount of water in a pot and added the brocoli. The evaporated water softens the broccoli. After the broccoli was steamed, we mixed it with grapes, bell pepper, pine nuts, and red onions.
Victoria chopped green olives in half while the egg noodles were boiling. She also diced some red onion. After the egg noodles were drained, she mixed them with the green olives and red onion. Sun dried tomato, red wine vinegar, Italian seasoning, and mustard were also added. To plate the pasta salad we added some basil leaves.
Check out Victoria here: https://www.eastbayhealthychef.com/
September 11, 2018
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.
September 18, 2018
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.
September 20, 2018
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.
- Go to this link: https://www.donatelife.net/
- Click on the button: Register to be a Donor
Follow the steps, and you can save another Nicole.
September 21, 2018
I had a swim lesson today. My coach knows about my heart transplant, my scar, and the fact that I’m immune compromised. She tells me if I need a break, then I should tell her.
Notice how I’m wearing a shirt? 
The shirt covers my scar. 
It’s amazing that I’m swimming so long. Before transplant, I did swim but only 10 laps. What happened each lap was:
- ¼ through: I run out of breath, my heart starts beating faster
- ½ through: I gasp desperately for breath, my heart starts beating faster and louder
- ¾ through: my heart is beating furiously, pain builds up inside my chest
I don’t feel any pain in my chest after swimming, which is a miracle. I run out of breath in one lap, not a ¼ lap.
My city, Pleasanton, is a very athletic city. Every one of my classmates is either doing soccer, football, hockey, basketball, cross country, lacrosse, tennis, golf, swim, water polo, marching band, or cheerleading. I think “I could’ve been that.”
In the lane next to me are kids my age swimming like pros. They have swimming scholarships towards a D1 school, and I can’t help think “I could’ve been that”. I was born normal, and if it wasn’t because of stupid hypereosinophilic, I could’ve played sports.
After transplant I have a new life. Instead of “I could’ve been that” is “I can be that”. In a few years, I can catch up to them and be as good as them. I have a chance, and that’s what matters.
September 22, 2018
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/
September 26, 2018
Amy (see August 24, 2018) was my substitute teacher for English today. When I walked into my classroom, I was really shocked to see her sitting at the teacher’s desk. I waved to her and she responded with a smile and a wave.
Later in the class we talked about transitions back into life. I really wanted to know, how did I become “normal” again? She told me I have a new perspective. What I do with that perspective is up to me. Amy said she understands if I don’t want to be completely honest about my transplant. Before she left for lunch I asked for her email. That way I have someone to talk to.
At lunch was my journalism club meeting. I decided to do an article about Amy. The idea was a hit among them, because a kidney transplant is not something that happens everyday. Maybe another meeting I can tell them about mine.
September 27, 2018
Today was my appointment with the endocrinologist. I started seeing my endocrinologist when I was really young, after my first heart surgery at Stanford. Because of my heart failure, I didn’t have enough growth hormones in me. On the growth curve, I wasn’t catching up to my peers. Before transplant, 6x a week I would need to inject somatropin, a growth hormone, inside me.
I’m 5’3”. I’m at below average height, but at least I’m not at my projected 3’. The endocrinologist said that I could grow about one more inch.
In the same building was my cardiologist that urged me into transplant. He caught my Protein Losing Enteropathy, arrhythmia, and talked to my mom about transplant early in the year. My mom said he was a “miracle doctor,” and the reason I’m alive.