Leonard from Indonesia (DX 2015 - RIP 2018)

[danieldew7]

Good afternoon,

I write this on behalf of Leo, Indonesian who got ASPS in his right calf since high school (estimated around 2002~2004).
He visited few clinics but they pointed the lump cause into basketball consequences.

On 2014 he experienced poor vision and was diagnosed by ophthalmologist as myasthenia gravis, followed by occasional lost vision.
After a lot of visits into various hospital, he decided to do biopsy in Penang, Malaysia and diagnosed with sarcoma, and the second biopsy as ASPS.

Around November 2016, he started to loose his vision and right ear hearing.
He was still able to communicate via phone by himself until the middle of 2017 after few surgeries, radiation treatments and chemo trials (sunitinib AKA sutent and cediranib) in USA.
Some parts of his digestive system weren't functioning properly and he broke his bones at some point, but no surgery could be done since it was too risky.

On Oct. 2017 he went to Penang again for radiation treatment and took votrient (pazopanib), heavily sedated on morphine for the pain. He grew really weak and experienced hallucination during this part of the medication. The doctor told his parents to bring him home and let him rest. The thing is, he was mainly treated in Penang, so there was no doctor to keep in touch in Indonesia. They did go to a oncologist in Jakarta about 5 weeks ago, but transferring medical record was not that easy and not much to be done.
At the end of 2017, he was bedridden and the others only could contact him through his family.
He couldn't eat anything for fear of choking. His speech is sometimes not clear (i think the muscles were getting weak). He forgot certain things but he was still able to tell stories, cracked some jokes. That helps with dealing with loosing him.

His journey ended last month.
You could visit his open instagram ID at "leonard_aja".

[D.ap]

Hello Daniel

I’m so sorry to hear of your friend Leonard , loosing his life to ASPS.
Thank you for the allowing us to be a part of Leonard’s story , and love and hugs to his family and you as you grieve for his loss.

Love
The Pearson’s (Debbie and family )