November 3, 2018

Another cooking day with Victoria! We made beef stew, singang, and seared chicken.

There was also a surprise visitor joining our cooking session today. Kathy Mima, my old tutor, visited me. Kathy has been very supportive since I’ve been in the hospital.

We first made beef stew. We bought beef then chopped it into pieces. We skinned the fat from the pieces then combines it with red wine, garlic powder, thyme, and rosemary. The skimmed fat was cooked and given to our dog, Billy. Victoria taught me how to open a bottle of wine. When we let the beef sit in red wine, it tenderizes and gives the beef flavor. Victoria cut up carrots, celery, potatoes, and leeks. We dredged the beef with flour, then seared it until it was golden brown. After the beef turned golden brown, we deglazed the pot with a cup of red wine and added carrots and leeks. We simmered them for half an hour, then added potatoes and celery.

Next we made singang. Sinigang is a filipino pork stew. We boiled pork in water to render the fat. After the fat was gone, we drained the soup from the pork. We then put the pork in new water, and added ginger, tomatoes, and onions. We simmered the stew for about an hour and a half. Subsequently we added spinach and lemon juice.

We prepared the chicken. Victoria brought leeks and my mom cut them up. We chopped up scallops and garlic and added them to the leeks. Next we dredge the chicken into flour. We seared the dredged chicken in avocado oil. After the four chicken breasts were golden brown on both sides, we added the leek, scallops, and garlic mixture. We deglaze the pan with one tablespoon of white wine and two tablespoons of red wine vinegar. We put a lid on the pan and let the chicken cook. After the sauce reduced, we turned off the heat and added spinach.

Check Victoria out here: https://www.eastbayhealthychef.com/

November 10, 2018

Today is another cooking day with Victoria. Victoria is the chef granting my Make-A-Wish (see August 9, 2018). My Make-A-Wish is to create a cookbook. Last week was actually supposed to be my last cooking session, but she decided to give me another for my birthday (see October 20, 2018) present.

We did two kinds of Alfredo today. The first type of Alfredo was a chicken fettuccine alfredo, and the second was a chicken fettuccine alfredo with mushrooms and tomatoes.

We prepared the ingredients by slicing chicken breasts into strips, thinly slicing mushrooms, dicing onions, dicing tomatoes, and mincing garlic. We sauteed diced onions in a pan with a little olive oil. When the onion was translucent, we added the chicken breast strips and minced garlic. We let the chicken sit, and after the chicken was cooked we dumped half of the mixture into another pan.

In the first pan we added garlic powder and salt, then let it simmer.

In the second pan we added the diced tomatoes and sliced mushrooms. We also added garlic powder and salt. We continuously stirred the mixture until the released mushroom juices were evaporated.

In a large pot we added 3 cups of half & half and 3 cups of chicken broth. We added fettuccine when the mixture came to a boil. We used a whole package of fettuccine (16 oz). The fettuccine absorbs the mixture, therefore it reduces; the starch released by the fettuccine thickens the mixture, making it a sauce.

play-sharp-fill

When the fettuccine was Al dente, we separated the noodle in half for each pan. The noodles were combined with the pans ingredients, and that’s it!

Today is my last cooking session with Victoria. I already chose what recipes we made to include in the cookbook. Victoria will take those recipes and write them. When Victoria is finished writing those recipes, she’ll email them to my Mom and I, and we’ll try to recreate them. Victoria and I will meet again in December to format the cookbook.

Check out Victoria: https://www.eastbayhealthychef.com/

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.

December 15, 2018

Ever since my doctor appointment with the G-tube doctor (see December 12, 2018), I’ve been checking my weight.

I’m around 100 pounds, but my scale is weird.

I’ve been checking my weight in the morning and at night, and I could weigh 104 pounds at night, but 102 pounds the next morning.

I’ve also been noticing my eating patterns.

I think the problem is that I’m always constantly hungry.

I think I’m so used to hunger spasms that I’ve learned to ignore them, and they eventually go away.

When I do eat, I quickly become nauseous.

Hopefully, that’ll change.

Also, I have not started on those appetite pills yet. I want to have Stanford approve them before I start taking them.

I have 3 months to gain 10 pounds. Gotta get that extra fat.

December 19, 2018

My appetite medication was approved by the doctors at Stanford. They said that other patients also take them.

I don’t think I actually want to take them.

The reason is that I don’t want to get help for something as basic as eating. That’s a little embarrassing.

I think I’ll just eat.

But can I eat?

I don’t know.

December 20, 2018

My Mom and I met with Victoria today to talk about my cookbook.

We went to Lokanta, a restaurant in Downtown Pleasanton. Their food was good.

Victoria has to recreate the recipes and make sure they taste good. Now is Victoria’s winter break so she has time.

After she tests the recipes she’ll send them to us and we’ll recreate them too.

Then our recipes are finalized!

The process after that will be to take pictures of the food, and then a picture of me for the front cover. Maybe I can do what everyone else does: holding a plate of food and smiling into the camera.

Our goal is to publish the cookbook before February.

December 23, 2018

I was wrong about Maddy.

Today I went to Happy Lemon to meet up with Maddy, the Pink Dot Club president. The Pink Dot Club is an organ donation club at my High School.

Remember October 2, 2018? That was the Pink Dot Club meeting which was supposed to be dedicated to Nicole. When Maddy glossed over the fact that Nicole died to talk about a class instead, I got mad.

Here’s an excerpt from my journal entry:

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.

Yeah, that’s a little passive aggressive. Or just aggressive.

Later that day I emailed Amy McCarthy, someone who had a kidney transplant. This is another excerpt:

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!

Reflecting back, I wasn’t angry because they ignored Nicole. Deep down inside, I think I was mad because I would never fit in with them.

If they glossed over Nicole’s death, then it implies they care more about their classes than someone that just died.

And their entire premise is for organ donation, and helping those waiting for an organ.

If they don’t care about organ donation, then where do I go?

Well, I was wrong. Or at least about Maddy.

Maddy is doing the Pink Dot Club because she wants to, not because of college. In fact, she didn’t even have college on her mind when creating this club.

It was because her cousin (who’s also named Justin) died from a heart disease.

I thought, “Her cousin just gave her the idea, but she did this for college.”

I was wrong, so I’m sorry Maddy.

January 28, 2019

Today I had another orthodontist appointment. My last one was December 10, 2018. I didn’t have to take antibiotics then, and I don’t have to take them now.

My teeth felt a bit sore, but they’ll get very sore tomorrow. Guess I’ll be eating soup for the next week.

March 26, 2019

Tomorrow I’ll meet with my G-tube doctor, and he’ll decide if it’s time to pull the G-tube out.

I’m scared, because in the past I’ve never had a good experience with that doctor. Like, never.

The G-tube is something I rely on, and it’s been hard trying to quit. I’m sorry if I’m not chronically ill enough for your sympathy.

Also, thinking about March 24, 2019, I have to go through with this entire process in fifteen years. Do I even need to pull it out?

Once it’s out, it’s out. For good.

That means if I slack off on nutrition, or become sick enough that I can’t eat, the door is closed. Forever.

Or if I go through surgery to get it inserted again. 😰

Would it be better in the long run to not remove it? Geez, I don’t want to think about it.