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 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.

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.

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.

October 10, 2018

Brayden got his heart today.

In this video, https://www.youtube.com/watch?v=kHztirA23S8, it introduces Brayden, a boy from Bakersfield with heart failure. His mother said November 2009 the doctors said Brayden wouldn’t live until the summer if he didn’t have a valve replacement. By valve replacement, they mean replacing his aortic valve with an artificial mechanical one. “Following complications from being on life support, doctors said he may never have the energy to walk again.” This video follows Brayden on his first day of school, an amazing milestone which the family didn’t think was possible. After he gets his heart transplant, he wants to go on a cruise, go hiking, run, and play sports. In this video, https://www.youtube.com/watch?v=uEpAkWI_49U, it talks about how Brayden is now full time staying at Lucile Packard Children’s Hospital. Most specifically, it talks about one post about how Brayden “wants to get a map of 50 states and get a badge from all 50.” To pass time, they want to collect local police badges while he waits for his heart.

The boy that defied all odds against the doctors, lived to have his heart transplant. At 1 AM, his mom posted a live update on FaceBook saying that his heart had finally come. brayden is supposed to stop eating in one hour, but he doesn’t want to eat now.

Follow his updates on FaceBook.

October 18, 2018

I talked to my Chemistry teacher today. She couldn’t make it to my 504 plan since she had an extra class to teach. I told her about my transplant, what I needed, and extra homework days. She easily complied. She also told me that she spoke with my last year’s science teacher, and that he asked about how I was doing. She said I was great: healthy and always optimistic even though I’ve been through a lot. That makes me real happy.

October 20, 2018

Today is my 16th birthday! My friend, Lydia, and I went to the Oakland Zoo to celebrate my birthday.

I specifically asked Lydia to celebrate my 16th birthday with me because I needed to tell her about my heart transplant. Lydia and I have been friends since 3rd grade, but we don’t go to the same school, so she really didn’t know what was going on.

She was pretty shocked. I guess it’s kinda weird for her to talk about it, since it is a heavy topic.

Last year October my grandma prayed for me. I remember she cried when my heart was failing. She believed that transplant would be my cure. She asked God “Please heal Justin before his 16th birthday.” After my 15th birthday I was evaluated for the transplant list. My grandma kept asking me whether or not the doctors accepted me onto the transplant list. A month later they called my Mom and told her I was denied.

Today is my 16th birthday. I’m grateful for my new heart.

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.

November 15, 2018

I also interviewed Mr. Lewin. Mr. Lewin is my math teacher. He’s the one that told me to write my story (see October 5, 2018).

He’s so nice to me. He told me that it was amazing that I was doing so well socially, academically, and physically. As a teacher, he’s seen other students struggle, but not with anything as life threatening as me. As a teacher, he’s also seen other students with great families, communities, education, and finances, yet they make bad decisions and end up falling to the bottom.

If you’re in the hospital, just know that you need to have hope. Hope is the one thing that’s guaranteed by yourself. When you survive your ordeal, you’ll become stronger as a person. That’s something to hope for.

A student spilled water onto his floor multiple times. The floor is carpet, so mold can grow on it. Mr. Lewin chastised that student, because if I get an infection from the mold, then that’s… bad.

December 25, 2018

Merry Christmas everyone!

13 (or 14?) years ago from today I was in the hospital for my hypereosinophilic syndrome.

Last year from today I just came out of the hospital.

I am grateful for being able to take my semester finals this year and stay at home with no pain.

My life is amazing right now.

Merry Christmas and Happy New Year!