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With studying and playing always accompanied by “treatment”, it is really difficult to reset our minds

The Yamada Family Story
Interview: February 2019

A urine test conducted at Yusei’s nursery school when he was five years old found abnormalities in his protein level and we were introduced to a hospital, starting his days of requiring visits. He was diagnosed with “steroid resistant nephrotic syndrome”. Normally, nephrotic syndrome can be treated with medication but this wasn’t so in Yusei’s case with it being steroid resistant. We were told that it would eventually lead to kidney failure and the choice needed to be made between dialysis and a transplant.

Yusei was born with his kidneys attached to each other and we had been informed by his doctor that this may become an issue in the future. To be honest, I was surprised because I thought such problems would occur much later on. However, because Yusei also had troubles with his hip joint, we chose to have a transplant as we wanted to cure the problem completely with as little impact as possible.

Although plans were made for a kidney transplant to be performed in October with my husband as the donor, Yusei was in poor condition the day before the surgery. As he wasn’t fully prepared to have the surgery, the decision was made to undergo hemodialysis until it could be performed next in January.
Dialysis of four times a week, six hours each is a heavy burden for Yusei. Usually, children grow by studying and playing: for Yusei, studying and playing always has to be done while “undergoing treatment”. Resetting our minds is really hard and sometimes we feel mentally beaten down.

Yusei has a little brother. While Yusei is in the hospital, I stay at Ronald McDonald House(RMH) to be near him while his little brother Kosei and my husband wait at home. Being apart, he must be so lonely and yet he doesn’t say so. Maybe he understands that it can’t be helped. Still, he seems to be concerned about Yusei and says he “wants to see him” and “wants to play with him”. When they are finally able to see each other at RMH, they constantly quarrel. They do seem to enjoy it though.

Ronald McDonald House not only can our family be close to each other but I can stay healthy because there is a kitchen available. At first, I was always buying ready-made meals at convenience stores but now I make my own meals at RMH and bring them with me to the hospital. There are other mothers that come and talk to me and I am thankful for being able to enjoy friendly chats and push the issues of children and sickness to the back of my mind even for just a short moment.

Having to stay in the hospital will continue for a while longer but as Yusei is expected to be given permission to spend the night outside over weekends, we are looking forward to spending some family time at RMH.

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