June 21, 2018

Today Pixar came to the Ronald McDonald House. They’re showing The Incredibles 2 in the activity room. I watched The Incredibles 2 with Angela and Noah. Angela and I watched The Incredibles on Sunday to be prepared for the sequel (see June 17, 2018). Noah is my friend being treated for stomach cancer.

Angela had to leave halfway through the movie for her therapy, so it was just me an Noah. The activity director gave us a pixar bag with a pixar hat inside. After the movie, I waited in line to get a picture drawn by Pixar artists. I choose to get a drawing of Remy from Ratatouille.

June 28, 2018

Julia, my sister, came to visit me today. We decided to watch a movie at the Stanford theater. The Stanford theater is a movie theater at Downtown Palo Alto that shows classic movies from the Golden Age of Hollywood.

We also asked Noah and his family to come with us. Noah is a 10-year-old boy also at the Ronald McDonald house. He has stomach cancer and is being treated with an experimental drug. Noah was pretty tired and his dad stayed with him, so his mom came.

Downtown Palo Alto is a reasonable distance from the Ronald McDonald House. Since I do need exercise everyday, it’s good that I’m walking. However, a patient without energy might not be able to walk the distance. Now that my heart pounding is less noticeable, it’s much easier for me.

At Downtown Palo Alto we ate at Lemonade, a health food restaurant. My sister also eats at lemonade at LA, so she likes the food there.

We watched Christmas in July. Christmas in July is about a guy being tricked by his co workers of winning a slogan contest. However, the owner of the company gives him the prize, without realizing he’s not the actual winner. When Christmas in July ended, we stayed for another move, The Gay Divorcee. The Gay Divorcee is about a women desperately trying to get a divorce, and she fakes cheating. Halfway through I got lost because there was so much singing and dancing and black and white.

My dad picked Julia from the movie theater. Otherwise, Julia would’ve had to stay the night with us at the Ronald McDonald House.

Noah’s mom liked the movies. She said it was nice that there’s so much fun stuff to do at Stanford.

August 7, 2018

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.

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.

January 16, 2019

Today was my biopsy.

What is a biopsy? A biopsy is when they take a piece of tissue. For me they take a piece of tissue from my heart to test the amount of rejection I have.

At 8 AM in the morning I went to get a blood draw. The doctors constantly test my blood to see how well my immunosuppressant, Prograf, is working.

I’m not allowed to eat or drink anything. I’ve been NPO (nothing by mouth) since midnight.

At 10 AM my Mom told me that we needed to go to Stanford.

At Mountain View, I dropped off a package to ship to Noah. Noah is my friend I made at the Ronald McDonald House.

The parking garage for the Lucile Packard Children’s Hospital was packed. That’s sad.

Every car represents one child. One child in the hospital being treated for something god knows what. And if they’re at Stanford, they’re obviously not here for something as small as a cold.

Inside the hospital, someone stopped me and said that they saw my video. His Mom found the video from the Make-A-Wish website. He said it was “sad but in a good kind of way” and it “made him cry”.

That touched my heart. Honestly, that someone cried because of my video, it made me feel proud. I’m actually making a difference in this world.

At 2 PM I went into Lucile Packard Children’s Hospital short stay unit. I used to go to their surgery center, but now that I’m using less and less anesthesia, I have a faster recovery time. The short stay unit means I have a shorter stay.

I hate placing in IVs. You would think that I would gotten used to the pain, but I haven’t.

I use tons of numbing medicine when they place in the IVs. I still feel the pain. At least the numbing medicine gives me a sense of security.

A child care specialist gave me VR goggles to play with while they put in the needles. VR goggles? I know, VERY fancy.

Honestly, all the VR goggles did was make me extremely anxious for the poke. However, I made sure that there was a hole so that I could see what was going on.

They poked me two times unsuccessfully. The third time they put in an IV. This IV was at the middle of my arm, so I couldn’t bend my arm or anything.

My biopsy was pretty short. I was not unconscious, just kinda high. No pain, just pressure on my thigh.

A doctor came before I was discharged. She told me that I should still be continuously be checking my blood pressure. I haven’t. 😬

I will definitely now. I feel so stupid for not doing that.

The doctor also said I was okay to do weight lifting. Just multiple reps with only light weights. And nothing to do with my scar area.

My Mom doesn’t want me to do weightlifting. She’s rather me do cardio, because she worries about my heart all the time.

We got back home at about 9 PM.