July 26, 2018

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.

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.

Follow the steps, and you can save another Nicole.

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/

October 2, 2018

Today was the Pink Dot Club’s meeting. It was supposed to be dedicated to Nicole, but instead the club officers talked 90% of the time about a guy that got detention for criticizing his Honors English teacher.

Nicole was a beautiful girl that died at 10 (see September 20, 2018). For her entire 10 years, she has fought to be alive. Every year she had to be back in the hospital for another painful surgery. Club officers, do you even know, can you imagine, do you understand the pain? The pain that she and her family goes through? Her dad sold his restaurant chain to be with her daughter. Her mom always  with Nicole at her side. Her sister choose to stay with her instead of her grandparents. She said “I love Nicole, and I want to be with her.”

Club officers, that guy that got sent to detention because he confessed that he hated Ms. Hewitt or whatever has nothing to do with the club. Yet you spent more time on him than Nicole during the meeting that was supposed to be dedicated to her. Club officers, that guy is alive. He is breathing, he is eating, he isn’t in pain. Nicole is dead.

Club officers, I wonder how much you even care about your own club. Why are you officers of this club, when you can’t even dedicate a meeting without talking about your AP classes? Oh wait, I know! College! Club officers, you’re only here because you want to get into a good college. None of you care that a 10 year old girl is dead, you only care that it’ll look good on your college applications.

Nicole was in so much pain, she woke up screaming. She would curse and shout at the nurses until they put her back into a coma. Club officers, I hope that one day, you’ll realize how conceited you guys are. You guys do nothing to help those in the hospital. Oh my god “I made cards! I’m doing a dance vid for those in the hospital!” Except you’re doing that because you want to. None of you will actually go on a school day, skip your APs, and visit them in the hospital right?

October 2, 2018

I contacted Amy. (see August 24, 2018). It relates to my first day of school (August 13, 2018) question: How do I transition back to being normal?

Hi Amy, I am the 10th grader with the heart transplant.

I just wanted to ask you a personal question. How did you transition back into normal life after getting out of the hospital?

No one understands what I’ve been through. After I tell my classmates, all I get is “cool story” or “Wow! I didn’t know that” or “that’s awesome”.

I thought the Pink Dot Club (the transplant club at Foothill) would be different but it’s exactly the same. Even the club president cares more about her 4 AP classes than she does about the patients at Stanford and UCSF.

Sometimes I feel like I want to drop out of school. I don’t want to be surrounded by people talking about APs or Colleges or Test Answers or SATs. It makes me angry how everyone only cares about themselves: what grades they have, what classes they have, what friends they have!

Today, in the Pink Dot Club, we talked about a girl named Nicole who died waiting for a heart transplant. Except we talked about her for 1 minute. Only about half the club was listening. The next 20 minutes we talked about Honors English and the teacher for that class. Everyone was listening.

October 30, 2018

Today was another Pink Dot Club meeting. We made art kits for children at the UCSF Benioff hospital. Maddy brought plastic bags, brushes, mini canvases, and paints. We decorated the bags with stickers. The stickers said “You’re the best!” or “Love!” or “BFF”.

In my Biomedical Class we were talking about a project about how to introduce to a person they have a medical disease. If you’re reading this blog, then you’ve probably experienced this before. In reality a doctor just talks to you and says you have …. However, in our class we’re supposed to make an Instagram post or a song for the patients. Which is totally weird.

My teacher talked about his sister and mom going in for their breast cancer surgery. They met with a bunch of doctors and surgeons to remove the cancer. It was devastating for them.

I raised my hand to share my experience. Here’s my experience going in to be evaluated for the transplant list:

My mom told me I needed a heart transplant in the car. It was undoubtedly shocking. I couldn’t believe I was THAT sick. I wasn’t dying in a hospital, I was a normal person. My mom explained that she and Dr. Saba were talking about transplant for a couple of moths.

The official evaluation was at Stanford. I had to meet with a child psychologist, nutritionist, social worker, and doctors. The saddest part of the evaluation was the transplant education. Someone from the transplant team talked with me about what transplant was, how it works, waiting for transplant, and after transplant. I learned about rejection, the statuses, and my risk for cancer. The transplant education was so despairing that my heart started to act up. I never told her because I didn’t want to be deemed as not ready for transplant.

After the education I was rejected from the list. It was understandable; I was too healthy. A lot of the kids on the list need it more desperately than me. I was re evaluated for the transplant list on April 10, and they let me on as a status 2. The list has different statuses: 1A, 1B, and 2. 1A is the people that need it the most while 2 is the people that need it the least. Since Lucile Packard Children’s Hospital didn’t have a status 2 transplant for 4 years, I was on there for a taste of being on the list. It was highly unlikely I would get a heart.

2 weeks later I got the call.

December 12, 2018

I think I’m losing hope.

My G-tube doctor is going to start me on new medication. It’s going to stimulate my appetite.

Since August, I haven’t gained any weight. If I don’t gain weight, then my G-tube is never going to be out.

I’m so sad.

Everyone can eat! That’s what being normal is. Eating is normal. I’m not normal.

The main reason why I want my G-tube out is because I want to be normal. No one else has a G-tube, so why should I?

Yet.. yet I can’t survive without it. That makes me sad.

I thought I was doing so good. I’m eating and exercising. My health is my number one priority, yet I’m not taking care of it?

I eat before school, at school, right after school, and then a meal for dinner. I even have a cookbook!

And it’s not working!!!

Everyone has opposite problems. Everyone just eats and eats, even if they’re full. I wish I could be like that.

Just because my problem is the opposite from everyone else’s doesn’t mean it’s not any less significant.

I’m also nervous about starting the medication.

When I started the Amiodarone, it interacted with my blood thinners and sent me to the hospital. If somehow the pills interact with my other medications and I need to be sent to the hospital, then that’ll suck a lot.

Of course I can just not take the medication. But I don’t know if I trust myself. I thought I was doing great, but noooooo.

It was predicted that by February I would get my G-tube out, but now it’s not a when but if question. If I don’t gain weight by February then I’ll have to get back onto the feeding.

So what am I going to do about it?

In the Ronald McDonald House, I always pushed my endurance everyday. I have a problem that I can overcome with some work.

For one, I have a scale. I can check my weight. Maybe not daily (I don’t know if I’m dedicated enough for that), but at least more than once a week. Secondly, I can snacks throughout the day. When I’m doing my homework, when I’m sitting in class, or when I’m being lazy.

The future of my body depends on these 4 months between today and March. I need to gain weight.

March 13, 2023 – Visiting Barbara

Today I visited Barbara Costerus with Miranda. Barbara is a kidney transplant recipient for 22 years and she is currently on hospice. She is amazing – she was on hospice for a year already and she is still here. Her hospice contract was renewed for another 2 months.

Barbara looked better than I expected. I met her and her husband Bart for the first time and what a horrible way to meet. However, anyone who has had a transplant for that long and survived is an inspiration. I told Barbara thank you for the inspiration she gives us.

Barbara told us about her life. She has two sons and both of them also had lupus. Her older son just passed away last year at 57 waiting for a kidney transplant. Barbara said it was hard, is hard. My mom says that grief manifests itself in physical ways. She thinks Isa has cancer because of the grief after her twin sister Ana passed away. Maybe that’s why Barbara is in hospice, because she can’t handle the pain of living after her son passed away. However, Barbara seems to be very determined to keep on living. She is frustrated that she can’t talk or contact her nephrologists or transplant doctors for advice. I mean, she was on hospice for a year and she’s still alive. However, her other son is doing well because he had a kidney transplant also around a year ago. That news delighted me so much.

After I visited Barbara I fought with Miranda. I said some things I shouldn’t have during the visit and Miranda pointed it out. I said “you’re so brave” because I did think she was brave! She’s staring death in the face and during the visit she’s asking questions about us, our transplant, and limiting the conversation to herself. I mean, if I was her, I’d probably be shitting myself, crying, moaning, complaining – being anything but graceful. How does Barbara maintain her composure in this time of crisis? Probably the most critical time of her life, the most acceptable time to be a crying mess, and she is a champ. She looks good too! She talked for us for 40 minutes. She is brave.

I snapped at Miranda. I yelled at her because she was listing off reasons that you shouldn’t say “you’re so brave” to someone in hospice and I said that I already felt bad enough it was like she was rubbing salt in the wound. Earlier, just after we finished the visit, I said I was sad. Miranda told me not to be sad because Barbara’s life is beautiful. She was able to live such a long life and death is not a natural part of life. I said that’s true, but it’s still sad. I mean, it’s okay to be sad visiting someone is hospice!

Miranda said she already accepted her own death. And then I said, are you for real? Because, like, are you for real? She’s 19. I’m 20. How could she accept her own death? She said that if she died tomorrow, it would be okay, because she already accpeted her own death.

For the first time ever, I saw the dark side of Miranda. I always thought I was the worrier, the paranoia, and the pessimist. Miranda was the optimist and reasoner. But now I was the optomist. I refused to accept my own death because I wasn’t going to die. Not now… not after everything we’ve been through. We need to fight with everything we have, even if the battles are long and hard.

The day before I made brownies with Miranda. That’s what I delivered to Barbara (along with bread). However, I forgot to give them to Miranda after we fought. So I cooled off walking my dog and just couldn’t in the middle. I collapsed in the park and literally sat limp in the grass. The visit affected me more than I realized. Then I drove to Bob Moss’ house and talked with him. He cheered me up because he’s always a good person. Then I drove to Miranda’s house, because it’s not far from Bob, and gave her the brownies. We hugged and mad up, although there wasn’t much to say. What can you say? These are scars we carry for life. The best we can do is eat our brownies and wait for the sun to rise again.

March 19, 2023 – Meeting Camila with Miranda

Today I met Camila in Hayward with Miranda. I met Camila at transplant camp in 2019. She reached out to me on IG and I am so happy she did because Oh my gosh! Am I so happy!

We first went to Jollibee and then we got cake at a nearby store. Then we talked in the car and then went to Target. We ended by going to get boba.

I realized how lucky I am to have Camila and Miranda in my life. Of course, Miranda is a blessing. She is my transplant best friend. We have exercised on FaceTime together during the pandemic, celebrated my NYU decision together, and visited Barbara on hospice together. But I have a strong feeling that Camila will also be someone I can call during hard times. She is also someone who had a heart transplant around the same time as me, same hospital as me, and same age as me.

We were walking around Target talking about things. Miranda looked at the baby food and said something about the liquid formulas she had to drink between the times she had the feeding tube in her nose. And Camila said like “yeah, those are disgusting” and I agreed because I also had to drink those nasty ass formulas too! And like… how amazing is it to have all three of us with the same experiences because we absolutely do not relate to 99.99% of the population. I mean, who else can I laugh with about formula and feeding tubes?

Miranda, Camila, me, and another boy named Roque were the “Four Musketeers” in Transplant Camp. I hope Roque is doing well. He’s somewhere near Redding, CA so that’s a three hour drive away. I told Camila we should visit Roque and kick his ass for not visiting us but Camila said he was too far 😩 One day Roque should drive down here so we can kick his ass over here – together!

Camila said we could all write a book. She would have 3 chapters, Miranda would have 3 chapters, and I would have 3 chapters. Miranda said she would need more than 3 chapters. I said the amount of trauma we have between the three of us is absolutely astronomical. It could fill a room!

I also said that we were not done writing our book because there are still pages we need to fill. We have so many pages left and we’re not halfway there yet. Camila is currently experiencing kidney rejection (she had a kidney and heart transplant) for a year now and I don’t know what to feel. I asked Miranda for advice and she said that she thought Camila was fine. Because when you think someone is fine, they are usually fine whereas if you think someone is not fine, they’re usually not fine. I wonder if I should start praying again so that I can pray for Camila. I want Camila to be okay because I need Camila to be okay. She is my fellow warrior and she has not finished writing her book.

I hope Camila doesn’t see this.