Ethan & Choco's Book Club

Striving to make access to books and reading a core part of the care that SuperKids receive in the hospital, with the principal premise that literacy support for children fighting cancer and other life-threatening conditions can help promote cognitive development and social connections that are part of thriving through treatment and beyond

Ethan’s Story

FullSizeRenderMy name is Ethan, and I live in Tustin, California. I’m 8 1/2 years old, and I have so many interests, such as playing tennis and golf, math and science, skiing, playing my guitar, computer coding, and I especially love to read. When I was 7 1/2 years old, I was diagnosed with Acute Lymphoblastic Leukemia (ALL for short), which is a blood cancer. I have to have 3 1/2 years of treatment, which includes lots of chemotherapy and steroids — that I take orally, through a port that is inside my chest, and through spinal taps. So far, I have had 1 year of treatment, and I have another 2 1/2 years to go. One thing that has really helped me through Leukemia is reading. In my first year of treatment, I couldn’t go to school and I was in the hospital a lot. I read all the time, and I when I didnt feel good enough to read, my parents read to me. Reading helped me to keep thinking and keep learning, and it gave me something interesting to talk about with others. It also let me escape from my boring hospital room to so many other realistic and fantasy worlds. I really can’t imagine going through Leukemia without books and reading.

Even though reading has been such a big part of getting through Leukemia, I noticed that the hospital hardly has any books. There are so many other great things for kids, such as a radio station and a movie theatre and a music therapist and lots more. But, you just dont see books in areas where kids spend time. In the playrooms there either aren’t books at all or there is one shelf that is up high with old books on it — and not any of the really great picture books and chpater books that I love to read so much. And, in all my time at the hospital, I’ve NEVER seen any other kids reading or being read to. The oncology nurses have actually told me often that I’m the only kid they ever see reading. Which makes me really sad, because I think all kids need reading while they are in the hospital, especially when they are there for a long time. And even if reading is only a SMALL  break from ALL the screens (which is what kids are doing so much of the time).

So, my mom and I partnered with the MaxLove Project and launched Ethan & Choco’s Book Club (ECBC) at CHOC Children’s Hospital! (In case you don’t know, Max has brain cancer and is the Chief Inspiration Officer for MaxLove — he’s one of my best friends, and he was even before I was diagnosed!) Our big goal is to make reading a regular part of the care that kids get while they are in the hopsital. So that, just like they can visit the radio station or get physical therapy, the can also check out any book they want, or get offered to be read to every day that they are inpatient. I want there to be book carts on wheels to visit patient rooms, and volunteers to offer to read aloud to them. And my GIGANTIC dream is to someday have an actual stand-alone library space, with books of all kinds for kids of all ages from babies to teenagers. I hope there are comfy chairs to read in and an area for storytimes (maybe even by real authors who visit!), and that all kids get library cards when they are admitted! And the really cool thing is that my mom (Dr. Ali) is a child development and literacy expert, so she knows all about kids’ books and how to help kids become good readers!!  Which I think is going to help make ECBC really awesome!

One thing that I’ve learned through Leukemia is something which I call “my philosophy”, which is that “you can always find good in the bad, but sometimes you just have to look for it.” I think ECBC is one of the really amazing “goods” that is coming out of my hard battle, and I’m really proud that we are doing this. I’m also super proud to be part of the MaxLove Project with my buddy Max, because we’re getting to work on helping kids not just to survive cancer, but also to THRIVE. Which is really cool!