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.
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.
The boy who spoke is the one lifting up his shirt. The girl is the person next time.
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.
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.
The woman with the purple shirt is Lizzy Craze.The woman with the blue shirt is my social worker. The woman with the grey shirt is my doctor.
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.
The girl wearing the white shirt is Maddy. The girl wearing the blue shirt is the Make-A-Wish person that made a run way show (see August 9, 2018).
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.”
The doctor in the grey is part of the post heart transplant team in Stanford.
Entertainment
The woman next to my Mom is the medicine person. Before I left for the Ronald McDonald House, she went over all the medicine with me.
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.
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.
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 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.
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.
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?
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.
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