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.

October 4, 2018

My 504 meeting plan (plan meeting?) was today. A 504 plan is a specialized education plan for kids with disabilities to give them extra accommodations. For example, if a kid had a learning disability a 504 plan would allow them to have extra time on tests. In my case, a 504 plan accommodates me when I’m in the hospital, have medical related illnesses, or in the rare case when I’m homeschooled.

Last school year my 504 plan was a lifesaver. When I was hospitalized last school year for calf pain, the 504 plan allowed me to be homeschooled for over a month. I was in the hospital for both semester finals, and the 504 plan excused me from taking them.

The vice principal and the nurse were there at the 504 plan meeting. All of my teachers except my Biomedical Sciences teacher (see October 12, 2018) and Chemistry teacher (see October 18, 2018) were there. I explained what I needed: unlimited bathroom access, access to the nurse’s office, extended time for missing schoolwork and homework, and the ability to move away from sick and coughing classmates.

After transplant, I’m very immune compromised. With a new organ, the immune system might see it as a foreign substance and start attacking it. Therefore, I have to suppress some of my immune system through my medication. If I do get sick, I have a chance of getting a live virus that will attack my heart or activate my lymph nodes that’ll trigger a cancer.

The school nurse understood the severity of the situation and gave the teachers a germ free classroom handout to pass in class. The hand out stressed the importance of not coming to school sick because of one (me!) immunocompromised classmate in their class. The hand out is included below:

The nurse said I’ve been through a lot, but told me this would be a great school year.

One of the students in this class has a medical condition that makes the student highly susceptible to infections. This is because of a medicine this student takes; there is no concern that this is a potentially contagious disease to any other person. We’d like to ask the parents to be considerate to the student and all the other students in the class.

Points to review for infection control (for complete district policy, refer to the health services website)

  • Do not send your child to school if she/he has a fever of > 100 F
  • She/he needs to be fever free for at least 24 hours before returning to school.
  • Do not send your child to school on fever reducing medication, she/he can still be contagious
  • If your child has been diagnosed with a significant infectious disease, such as chickenpox, please notify school health office
  • Do not send your child to school after she/he has vomited at home
  • Do have your child see a health care provider for any unexplained rash.
  • Immunize your child against influenza.

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.

August 26, 2019 – 504 Plan

Another Monday, another school week. Ewwww.

Anyways, I had my 504 plan today. My last 504 plan was on October 4, 2018, so I was surprised that this one was so early in the school year. Also, the school didn’t inform me that my 504 plan was today?!? I just found out yesterday when my mom and I were fighting when she yelled “Y’know, why don’t you just not come to the 504 plan tomorrow!”

The reason I have a 504 plan and not an IEP is because a 504 plan is added modifications to your academics while an IEP is a completely customized education. 

As expected, not all my teachers were there. Of the group attending was my AP Psychology teacher, US History teacher, vice-principal, school nurse, and school counselor. 

So it was the same old, same old. Just the usual stuff:

  • Flexibility for missed assignments and schoolwork for days missed
  • Unlimited bathroom trips
  • Ability to change seats if students nearby are coughing or sick
  • Sunscreen applied regularly stay out of sun

Last year was the tricky year. Since I was so fresh out of transplant, I was so sensitive to diseases and getting sick. When ever someone coughed in the classroom, I would avoid them like the bubonic plague.

I don’t anticipate this year to be as tricky. I feel that it’s going to be easier, and that I have a lot more freedom.

What’s different about this year is that I have a full schedule instead of the five periods I attended last year (10th grade) and ninth grade (the grade I was in heart failure). 

Pre-transplant I could take my medications roughly in the morning and evening, but now my meds require to be timely. I take my morning meds in first period (8:45 AM), but no one minds because everyone minds their own business.

I mean, who would be like “Oh my god, he takes meds! Hahaha!” High school kids are mean, but they’re not THAT mean. I feel like the only people who would say that are people who don’t have lives.