"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
Today Angela and I watched The Incredibles.
Angela is my friend at the Ronald McDonald House (see June 15, 2018 for her condition).
The Incredibles is a movie released in 2002, and the sequel will be shown at the Ronald McDonald House on Thursday (see June 21, 2018). Since Angela hasn’t seen The Incredibles before, we watched it today because we want to come into The Incredibles 2 prepared.
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.
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.
One of the benefits of staying at the Ronald McDonald House is you get to know a lot of people. Of course you don’t want to be at the hospital, but if you’re a patient staying at the Ronald McDonald House instead of the hospital then you can have fun. My most popular way to meet people is just sit in the community dining room and read. People will automatically come up to you if you look open.
People are surprised to know I’m the patient. They said I look so healthy, since I’m not in a wheelchair, have IV tubes sticking out, or extremely skinny. Someone even said they thought the patient was my grandma, and not me. That’s so good!
The people you meet and their stories are amazing. They’re inspirational but sad. A 10 year old girl has 10 open heart surgeries. A 14 year old girl with leukemia and went through different types of painful chemotherapy. A guy with a stem cell transplant that needs to stay at the Ronald McDonald House for 6 months (twice my required stay for heart transplant). A 10 month old girl with heart and brain damages. These are just a few.
When I was reading my book at the community dining room, I talked to Joe and another person at the same time. Joe is the dad of Nicole (see September 20, 2018), a girl who shortly came into the hospital after I left. This is Nicole’s 5th open heart surgery to replace her right artery. Her right artery was replaced with a mechanical one, and as she grows up her heart grows too, so the artery needs to be replaced. When she didn’t wake up, that was the sign that things were wrong.
I also talked to a nanny of a patient. That patient has been at Stanford last year for leukemia, and for the Fourth of July she was wheeled onto the Lucile Packard Children’s Hospital roof; from there she watched the fireworks. She’s been through many painful treatments, and now they’re trying a bone marrow transplant. Before she gets a bone marrow transplant, she needs to go through conditioning. Conditioning was supposed to be finished in November, but it’s now July. The nanny shaved off all her hair to support the patient.
The nanny also has health conditions. She has multiple strokes, so she needs to go through painful treatments to control them. When she went to a doctor in San Francisco, she had to bend over and they inserted a needle into her spine to place an IV. It wasn’t done well, so she had to bend over two times.
It’s a sad world inside the hospital.When you’re around so many sick people, you also become sad.
Today is Kayano’s 15th birthday! Kayano is a patient at Stanford, who’s also my next door neighbor at Ronald McDonald. Kayano has kidney failure and he needs to be put on dialysis until he’s healthy enough to be put on the kidney transplant list. Kayano is having less and less energy, so he needs his kidney transplant soon.
We went to Redwood City Downtown to watch a movie. Kayano doesn’t eat food, but he still buys popcorn. He licks the popcorn. After we watched the movie, Kayano’s mom wanted to get birthday decorations at Safeway. As we drove along El Camino Real, Kayano’s mom told us she never knew that Stanford had so many attractions. She thought Stanford was in the middle of nowhere.
When we got back to the Ronald McDonald House we celebrated his birthday in the community dining room. Yesterday Kayano’s mom cooked brownies. We stuck 15 candles into the brownies and Kayano blew them out. Kayano’s mom also bought ice cream at Safeway, so she served the brownies with ice cream.
Today my Mom and I decided to go swimming at the Palo Alto YMCA. Before transplant, I was too weak to even exercise. I tried to swim, but 10 laps was all I could handle in an hour. However, during transplant education they said I could be able to play sports once I had a new heart. Now that I have my heart transplant, I can finally swim.
We brought Orion (pseudonym), another patient at the Ronald McDonald House with us. They’re from Hawaii, and they’ve been at Stanford multiple times. Orion loves the feel of water because it loosens up his joints. Ever since his brain tumor, he’s gained weight that’s been putting pressure on his joints.
I tried swimming, but I didn’t have as much endurance as I hoped. Nonetheless, I feel that I can improve on my swimming. Also I’m only 2 months out of transplant, so I should still be in recovery.
I had a great time swimming with Orion today. The YMCA is much better than the Stanford University pool, which I used before. Since The YMCA is also an inside pool, I don’t need to worry about the sun and skin cancer.
Today Nicole’s dad prepared a meal for her church family. Nicole is a girl that’s been in the hospital since May. She was born with a non functioning right artery, and ever since she’s had to replace it with a mechanical one. This was her fifth open heart surgery, but after complications, she’s still in the hospital. Hopefully she gets out soon (see September 20, 2018).
Nicole’s dad is a chef. He built his first restaurant at 18, and started his own restaurant chains. However, when Nicole got sick, she asked for her dad to be with her. He sold his restaurant chains and left Los Angeles just to stay with Nicole.
Every Saturday my Dad visits me at the Ronald McDonald House. He takes me out to have fun for the entire day. Downtown Palo Alto is a walkable distance from the Ronald McDonald House, and at Downtown Palo Alto is a Caltrain station. Today we took Caltrain to Sunnyvale.
We got to the Caltrain station an hour earlier than the next departure, so we decided to get drinks at a cafe in Downtown Palo Alto. Downtown Palo Alto has a lot of restaurants to enjoy, and their own Stanford theater (see July 20, 2018). There’s a famous restaurant, Ramen Nagi, at Downtown Palo Alto (see July 17, 2018). From the Ronald McDonald House to Downtown Palo Alto is wheelchair accessible.
We took the train to Sunnyvale. There’s steps to board the train if you decide to take it. Since I have to stay at the Ronald McDonald House for 3 months, I want to make the most out of my time. I loved watching the passing scenery.
Downtown Sunnyvale isn’t as big as Downtown Palo Alto. Notwithstanding it’s still very impressive. Across the Downtown Sunnyvale Caltrain station is an impressive plaza. Downtown Sunnyvale also has a street that’s called the Historic Murphy Avenue, and it’s extremely beautiful. It reminds me of Downtown Mountain View. You can also check out that place with Caltrain.
Going from Downtown Sunnyvale we took Caltrain back to Downtown Menlo Park. At Downtown Menlo Park I bought a book from Kepler’s Books. The book I bought was The Testing, a book about an intense college competition after the apocalypse. It’s similar to The Hunger Games; teenagers fight each other for a better life.
From Downtown Menlo Park we walked back to the Ronald McDonald House. I was so glad to be back because I walked a lot. I needed to rest for a while. Last year I was in the hospital for a week for calf pain. Ever since then I take Tylenol when my calf pain flares up. Today was a strenuous day, so I took tylenol. I ate my dinner at the Ronald McDonald House.
Every Wednesday at the Ronald McDonald house there’s a movie night. Usually no one goes (I don’t know why?), but I invited my neighbor, Kayano, and his family to come. I also invited Johanna (pseudonym) and her mother Tanjila (pseudonym) to watch the movie with us.
Tanjila is a really sweet person. She was nervous about bringing Johanna to Stanford, since they live far away. She said I made them less nervous, which I felt great about. Johanna needs a lung transplant, but she’ll need to be on an oxygen machine in the meantime.
We watched Trolls. Trolls is a movie about trolls. It’s so bad it’s hilarious. I loved laughing at the awkward moments.
If you’re at the Ronald McDonald house or the hospital, you’re most likely in pain. I suggest finding something to occupy your time to distract from the pain.
At the Ronald McDonald House there’s tons of activities for you to enjoy, such as bingo night, arts & crafts, or movie night. My personal favorite is sitting at the kitchen and reading a book. People are more open to talk to you if you make yourself seem available. The Stanford Mall is across the street, and Downtown Palo Alto and Safeway are walking distance away. Safeway has a food bar, and Downtown Menlo Park is not far from Safeway. If you can make it to Downtown Palo Alto or Downtown Menlo Park, you can hop on a CalTrain and travel to neighboring cities.
At the hospital, check out the Family Resource Center. I rented so many movies at the Family Resource Center that I finished the Captain America, Mission Impossible, Lord of the Rings, and Avengers series. The hospital also has a great garden to explore, and each unit has a balcony so you can have fresh air. I remember my room had so much stenk that outside smelled like heaven. Stanford has playrooms for you to enjoy. The playrooms include games, and there are other people at the playrooms you can play with.
My mom’s friend visited me at the Ronald McDonald house today. She’s a principal at a preschool. We walked across the street to a cafe at the Stanford mall. I got to eat my salad filling my daily requirement.
Here’s my daily checklist:
Today is my grandma’s birthday. I’m also leaving the Ronald McDonald house in a couple of days so we’re celebrating today as a going away/birthday party.
Kayano, Koda, his mom, and his grandma came to celebrate. Kayano is my next door neighbor being treated on dialysis, eventually leading up to his kidney transplant. Emma’s (pseudonym) family also came. Emma is my 16 year old friend at the Ronald McDonald House. We brought out a cake and served it to everyone except Kayano, who doesn’t eat.
Today I left Ronald McDonald house. It couldn’t be more bittersweet.
For one, the Ronald McDonald house was probably the happiest time of my life. I met a lot of people that I became friends with. They provided a network of support which is hard to leave. Everyday was also an adventure. I could walk across to the mall, get food from the common area, talk to people in the kitchen, or explore downtown Palo Alto.
On the other side, I’m glad to leave. I hate being in the hospital. Leaving means I’m healthy, and I want to be normal again. Even though I’ll have a hard time being “normal” again once school starts, I will be.
I’ll always remember my time at the Ronald McDonald house. I’ve met so many people that had amazing stories. I’ll always keep them in my mind.