Name: 埃萊娜的故事 (The Story of Elaina)
Uploaded: 2024-05-31T09:08:52.000Z
Duration: 4 min 27 s

程度副詞

When the doctor called, you know, it was a regular morning for us. You know, Elena was running around, you know, the kids were playing, Nick was home. It was just like a typical morning and around 10.30 the doctor called and she said, you know, we got her blood work back and it looks like it's leukemia.

醫生打電話來的時候 對我們來說只是一個普通的早晨埃琳娜到處跑，孩子們在玩，尼克在家。就像平常的早晨一樣 10點半左右醫生打來電話說 我們拿到了她的血檢報告 看起來是白血病

未來進行式

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.

我喘不過氣來，她說，對不起，她說，我們需要你們收拾行李，直接去兒童慈善醫院。他們會在那裡等你們，預計你們要在那裡待一個星期。我沒想到會聽到這些話。我們認為是白血病

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

是的，就在那天，我們的世界改變了。

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.

埃琳娜四歲半時來到我們這裡，她有古巴和薩爾瓦多血統，被診斷出患有所謂的前 B 型急性淋巴細胞白血病，這是一種骨髓癌。我們知道，由於她的基因構成和種族背景，她對現有的標準方案會有不同的反應。弗拉特醫生早就知道這一點。我們不太瞭解西班牙裔癌症的遺傳學，我們不太瞭解的原因是，當你看臨床試驗，即我們從2011年到2018年為患者安排的研究時，參與者中有87%是白人，8%是西班牙裔，其中包括成年人。

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.

她經常中性粒細胞減少。就在那時，情況變得非常可怕，因為你面臨的是生死攸關的局面。我們知道她的基因突變更多發生在西班牙裔患者身上，但我們的難題是該怎麼辦，因為沒有相關的臨床試驗報告，而且不幸的是，她的治療也沒有其他辦法。她的治療強度已經達到了我們所能達到的極限，這確實是唯一的選擇。對她來說，真的沒有其他選擇了。這就是埃琳娜的病例的困難所在，她代表了許多拉美裔兒童。

 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.

埃琳娜目前的狀況是病情有所緩解。她已經接受了七個月的治療。她的體格檢查結果很好，她已經恢復了自我，精力充沛。她的精力絕對恢復了。這是件苦樂參半的事，因為一方面，我們知道她的身體不再受到壞細胞的侵襲，但另一方面，我們仍然處於那種未知的時期。有時每個月去看病時 我的心就像被揪住一樣 無法呼吸 直到我看到那些數字埃琳娜將面臨的最大風險是，這種疾病復發的機率非常高。當你看到這些差距時，99%的白血病患兒基本上都能治癒，但對於拉美裔患兒來說，這個數字還在85或87左右。看到這種差距，你會說哇，我們能做些什麼呢？兒科