I just lost my breath and she said, I'm sorry, you know, and she says, we need you to pack your bags, go straight to Children's Mercy Hospital. They'll be waiting for you guys and expect to stay there for a week. I was not expecting to hear those words. You know, we think it's leukemia.

息も絶え絶えになり、彼女は、ごめんなさい、と言った。あなたたちを待っているから、1週間はそこにいてほしい」と。そんな言葉を聞くとは思わなかった。白血病だと思う。

So yeah, that's the day our world changed.

そう、あの日が僕らの世界が変わった日なんだ。

So Elena came to us when she was four and a half years old and she is of Cuban and El Salvadorian ancestry and she was diagnosed with what is called pre-B acute lymphoblastic leukemia and it is a cancer of the bone marrow. We know because of her genetic makeup and her ethnic background that she would respond differently to the standard protocols that were out there. Dr. Flatt knew that up front. We don't understand the genetics in Hispanic cancer very well and the reason we don't understand it very well is because when you look at clinical trials, meaning the studies that we place patients on from 2011 to 2018, the participants was 87% white and 8% Hispanic and that includes adults.

彼女はキューバ人とエルサルバドル人の血を引いていて、B型急性リンパ芽球前性白血病と呼ばれる骨髄のがんと診断されました。彼女の遺伝的な体質と民族的な背景から、世に出回っている標準的なプロトコールでは反応が異なることがわかっていました。フラット医師はそれを前もって知っていた。私たちはヒスパニック癌の遺伝についてよく理解していません。なぜよく理解していないかというと、2011年から2018年までの臨床試験、つまり私たちが患者を受け入れている試験を見ると、参加者の87％が白人で、8％がヒスパニックだからです。

She hit neutropenia way too often. That's when it got very scary because you're seriously looking at a life-and-death situation. She had a mutation that we know happens more frequently in Hispanics, but our dilemma is what do we do with that because there's no clinical trial written about that and unfortunately there would be nothing else to do with her therapy. She was already as intense as we could go with her therapy and that was really the only option. There was no other option really for her. That's what makes Elena's case difficult and she represents many many Hispanic children.

彼女はあまりにも頻繁に好中球減少に陥った。生死の境を彷徨うことになり、とても怖くなりました。彼女はヒスパニック系に多く見られる変異を持っていましたが、私たちのジレンマは、それをどうするかということでした。なぜなら、それについて書かれた臨床試験はなく、残念ながら彼女の治療で他にできることはないからです。彼女はすでに私たちができる限りの治療を受けていて、本当にそれしか選択肢がなかった。彼女にとって他の選択肢は本当になかったんだ。それがエレナのケースを難しくしている理由であり、彼女は多くのヒスパニック系の子供た

Elena's status today is she is in remission. She is seven months post treatment. Her physical exam checked out fine and you know she is back to being herself and energy and lots of energy. Her energy has definitely come back. It's bittersweet because you know on one hand yes we're in a place that you know she doesn't have bad cells attacking her body anymore, but you're still in that kind of unknown period of time. Sometimes walk into these appointments every month you know like a grip around my heart and not being able to breathe until I see those numbers. The biggest risk that Elena is gonna face is that this disease has a pretty high chance of coming back. When you see these disparities of 99% of white children essentially today with standard risk leukemia will likely be cured, but that number is still somewhere around 85 or 87 for a Hispanic child. You see this disparity right and you say wow what what could we do? Pediatric research is is so important for so many people in that although we've come a long ways and the research and the treatments and the outcomes are so much better we still have so much farther to go.

エレナの現在の状態は、寛解している。治療から7ヵ月目です。健康診断の結果も良好で、自分らしさを取り戻し、エネルギーに満ちあふれています。彼女のエネルギーは間違いなく戻ってきた。一方では、悪い細胞が体を攻撃することはもうないんだ、ということがわかるから、ほろ苦い気持ちにもなる。毎月の診察に行くと、心臓が締め付けられるような感覚に襲われ、数値を見るまで息ができないこともある。エレナが直面する最大のリスクは、この病気が再発する可能性がかなり高いということだ。標準的なリスクの白血病を患う白人の子どもの99％は治癒