Cancer

Project Koru. A lot has brought me to this story that… | by Alex Thompson | Nov, 2021

Project Koru

A lot has brought me to this story that I’m going to tell, and as many of you know I haven’t written on here since December of 2019. There’s a couple different reasons why, the first was COVID, and the second was a total surprise diagnosis of a more aggressive type of cancer and how it hit me both mentally & physically; 2020 was something else.

A lot of what’s gotten me to this Project Koru blog post was having a relapse of the same type of cancer as last year in July & the steps since then that have lead me here.

I’m not going to tell you to much about 2020 except for some medical updates from last year.

Last year I was diagnosed with a grade three Hemangiopericitoma. A totally different kind than my original low grade Ganglioglioma brain cancer.

The hemangiopericitoma is a type of sarcoma (soft tissue cancer) that was in my brain. In 2020 I had two surgeries; one open brain surgery (over 16 hours long) & one neo-nasal (through the nose). After the two surgeries I did 7 weeks (Monday through Friday) plus a day of IMRT Radiation (36 sessions in total.

I finished up treatments in August of 2020. My 3 month MRI’s from then to April looked great,, everything was clear, I was in remission. When I had my 3 month MRI in July that changed. There was a new growth and my neurosurgeon & myself both knew that we had to tackle this hard. I had surgery on July 30th. The neurosurgeon bring his amazing self, he managed to get the whole tumor out. We also did five sessions of Gamma Knife radiation. After my second or third session my new oncologist & myself decided to add on chemotherapy, both oral & infusion.

I wasn’t able to work during this time, so I set up a GoFundMe. A day of two after meeting my goal I got a email from Project Koru saying that I’ve been invited to come to one of their camp sessions on Maui. Project Koru is a camp for young adult cancer fighters & survivors. I totally forgot about applying back in January or February to have a chance to do it. I couldn’t refuse, all I had to do was pay for my flight ticket & everything else is covered. I knew that I would learn so many unexpected things.

We just finished day two of full camp days & I have not been disappointed.

On day one we did The Road to Hana, the road has over 620 turns & it took us many hours. We made stops to take breaks, eat & enjoy the downpouring rain. The town of Hana itself was a bit of a disappointment, but we still had a lot of fun. We went to a big swimming area that is connected to Pacific Ocean. There were a couple options to get to the the water, & I chose to do the big way down. I cliff dived 30+ ft down!! I ended up jumping 3 times!!! I also cheered on others & helped them get out of the water. It was a great way to start the week.

On day two we went surfing in the morning & myself being a amputee I was a little worried & scared that I wasn’t going to be able to get up. By on my first wave I nailed it!!!! I stood up, kept my balance & almost made it all the way to the beach!! I had nine, ten great runs on the surfboard while also cheering on the others at camp & thanking one of my fellow campers & one of the counselors for taking videos & picture of us.

It was a pretty chill rest of the day, three of us walked to the general store & pie shop & back. I than sat by the beach & was on whale watch duty, I would faintly see them, then thing that made me want to write this post happened, itwas seeing a whole whale tail come up & go back under. It was breathtaking & I knew then that I had to share my experience at this Camp.

Tonight after we ate we had our nightly “bonfire” & we talked about alot of things. One of the questions has me stumped.

The question is “What gives me strength??”. Like the strength to help me get through another battle with cancer. And up to this second, I really don’t know, genuinely don’t know. I’m going to have to think really hard about this, I’ll keep you guys updated on this question as every remaining day goes by.

A lot of us are ending the second full day by bringing our cots by the ocean & sleeping outside. It will be a good way to end the day.

I’ll give you updates for the rest of the week. You guys rock!!

I’m writing for days three & four below:

Day 3-

We woke up early, ate & went to the surfing beach, there was one problem……we got there early. So in the time in-between we went to another beach. This beaches waves were at the next level! A lot bigger & longer. We watched some surfers & then we went to the part of the beach where bug sea turtle’s go to and people are blocked off from getting too close to them.

We went to a couple different locations on the beach & got pictures. Then we got in the van & headed back to the original beach to surf.

It was another great day on the waves, everyone tore it up and did a great job. For myself it was a little harder for some reason. I fell down faster, had problems making adjustments, but it was still so much fun. The waves were bigger with the wind.

Later in the day we wanted to give back to the Island of Maui and we went to a wildlife refuge and helped get rid of some invasive plant species that were taking up space.

I had some problems while helping pick out the plants because I kept getting light headed. But the others checked on me and made sure that I was doing okay.

The rest of the night went by great.

Day 4:

We had a early morning!!! We had breakfast at 5:30 in the morning, we then went to a activity that was WOW.

All of us got to go on a early morning, team ocean canoe ride. A very well respected island elder came on the canoe with us. He started doing chants & we would copy him & we would listen to the meanings of what what being said.

After a while we all went into the ocean and swam & the elder said a blessing over us. We would dunk our heads (whole bodies) under water and we would come back up and put our hands up in the air and he would say something in his native tongue. It was a experience that I’ll never forget.

We went and heard the story about how for hundreds of years the people of Hawaii would build what I would equate it to rock nets to catch fish to feed the villages. We helped bring rocks to a area where a island native will further his work on rebuilding the wall.

We then rowed back to land and when we got back we helped bring the giant canoe back up, put our life jackets away and I was given the duty by the elder to put the rowing paddles away. He called me Nai’a, he called me Nai’a because of my power name at camp.

A lot of stuff went on today that I can’t remember all of it!

We went to another beach to eat, one of the other campers B made her way to the ocean and I could tell that she was having am amazing time in there. I was watching her, making sure that one of the waves didn’t pull her out into the ocean like we sometimes hear about.

We then went into a small town and explored a lot of the little shops on the Main Street & streets right off of it.

We met back up as a group at the fire station and went to a secret, small but amazing place to see the sun go down and the moon rise at the same time.

We got back to camp, had our dinner and then we had our nightly fire to talk about the day.

One of the questions that was asked was “What was a high, and what was a low for you today?” I said, “One of my lows for today was not being able to help out with rowing on the canoe. A high was getting everyone’s phone number and building a way to stay in contact with people after camp is done.”

What was high, and a low of your day? Is there a way that you can get the low to dissappear???

We ended the night by watching the 97% covetrd solar eclipse, the longest one in over 500 years. Seeing the many stars, the moon and shooting stars with this group is a blessing.

I can’t wait to tell you about day 5 tomorrow!! Hopefully I can write it after the activities so my mind doesn’t get overwhelmed by the awesomeness of the day.

I have a goal for tomorrow, get onto the surfboard & surf with no help from the instructors. I’ll let you know how it goes!

Until tomorrow.

I’m writing about day five and day six below:

Day five was a day of growing together more as a ohana and enjoying our last full day together as a group.

In the morning we had our third and last session of surfing lessons. It was amazing. Great feel to the water, great vibes from the ohana and there was tons of love going from us to the instructors. We are so thankful for them.

I tried to surf on my own without getting a head start and boy, it was a struggle with me having just one arm/hand. The one thing that I struggled at was getting up fast enough while the wave was still pushing hard. I tried, and tried, and tried again. It wasn’t perfect, but I finally got myself up and planted in a good standing position while the wave still had a good push to it. I’m forsure going to learn and practice how to get up fast with one arm & hand, maybe I can get in contact with & get some pointers from Bethany Hamilton.

The afternoon was pretty chill and low key. A lot of us stayed at camp and did fun things like walk to the general store/pie shop (I didn’t go, the reason why is coming up)….

I didn’t go to town because I was getting a tattoo!! I got back to camp from surfing and took a good long shower to prepare myself for the tattoo.

Every session at camp the campers and staff can choose if they want to get a tattoo or not, and this week meant so much to me and I grew so much as a person at this camp that I jumped at the chance.

I got a tattoo of a Dolphin with waves that had the Camp Koru sign included in it.

My power name here is Dolphin, or as the respected island elder called me Nai’a . I have always had a love for Dolphins, I would get so excited to see them, & learn about them when I would go to Zoo. I almost got to swim with some Dolphins when I went on my Make-A-WIsh trip in early 2001, but it didn’t happen. Then the story about Winter the Dolphin came to light in the movie Dolphin Tales. When I heard the news of Winters passing my power name became more clear to me. My love for Dolphins, Winters story and the place where camp was made it very clear to me.

Around sunset we took a break from the tattoos and went to an amazing spot as a camp family to cherish the time that we’ve had with eachother this week. The ceremony meant a lot to everyone of us.

Day five was also Kahakia’s birthday!! She turned 26 and we spent the whole day celebrating it with her. The first thing that I did when I woke up was went and found her on the beach, said happy birthday, gave her a big hug, and watched the sun rise with her and the others. We surprised her with a surprise birthday donut when she came into the dinning room after she got her tattoo. It was a honor to be able to celebrate her birthday with her. Like we said that night, her boyfriend has big shoes to fill now.

In total, four of us got a tattoo on the last full day.

Day Six:

We had our last moments together as a full group, we surprised the four staff members with cards that each of us wrote on and signed with our power names.

We all went our separate ways today to go back home. Some of us made sure that we got to do some last minute fun things together before we went back to the airport.

Four of us went and got a brunch and hung out before two of them had a go back to the airport.

Kya and I went to the small town of Paia and met up with Kaouka who had to stay a few extra days before she heads back to Canada.

We found the Hostel that she’s staying at, went and got her some food, Kaouka and I went and asked a tattoo shop staff member some questions about the best soaps and lotions to use for the tattoos. After that we went back to the Hostel and the three of us had a good time just laying back and being with eachother.

Kya and I had to leave Kaouka to head to the airport. Kya and I hung out at her gate until it was her time to board her flight.

What an amazing experience that week was.

I’m going to miss everyone that was at Camp this week (Journey, Kya, Piper, Kaouka, Kahakia, B, Banks, Denali, Water, & Koa), like alot of us have said, until the reunion! Love you my new ohana/pod.

And to everyone reading this, I’ll try my best not to wait two years until my next post.

Until next time,

Dolphin (Alex)

There are hundreds of more pictures from all of us that was there.

And here’s a update on the What gives me strength question:

What gives me strength is my family, my friends, my cancer family, and now my Camp Koru ohana. They are what gives me the strength to tell cancer to F off & to make sure that I do everything possible to make sure that it doesn’t come back.


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