疾风已再起,何时当言弃?

Andrew Levy的父母本以为孩子身患罕见类型的白血病、已经注定无可救,并开始做最坏的打算。然而,不可思议的事情发生了 ……


Esther Levy在自家的院子里跟着Andrew。

当Esther Levy和Dan Levy的儿子Andrew 14 个月大时,被诊断为患上了一种极为罕见的白血病,据他们的医疗团队讲,患上这种病的几率,就像一个人被鲨鱼咬中的同时、又被闪电击中一样。

白血病是一种源于骨髓中制造新鲜血液细胞的造血干细胞的癌症,其种类繁多,在儿童中最为常见的是急性淋巴细胞白血病(ALL),而且这种白血病在大多数疗效很好。Andrew所患的则属于急性巨核细胞白血病AMKL),全美每年只有大约 45 个儿童病例,治愈难度极大。急性巨核细胞白血病患者的生存几率大概为一半,但如果患者恰好携带某种特殊基因型的话,生存几率将骤降为十分之一。不幸的是,基因分析的结果表明,Andrew恰好属于这一小类人群。

更不幸的消息还在后面。诊断结果出来两周之后,Andrew的医生、斯坦福大学Lucile Packard儿童医院的肿瘤专家Norman Lacayo接到了一个紧急电话。来电者正是西雅图血液学实验室(Hematologics Inc.)的总负责人、负责分析Andrew细胞的Michael Loken。Loken近来发现,一小部分急性巨核细胞白血病患儿表现为一种特殊的表型——白血病细胞表层有一种称为R.A.M.(是之前一位患者名字的首字母缩写)的蛋白质,这种表型是提示患者预后极度不良的独立预测因素,患者的生存率仅有六分之一。Andrew也存在这种表型。

“这种癌症的患者有存活下来的吗?”Dan向Lacayo问道。“我当时只是想知道治愈不是不可能的,”Dan回忆道。Lacayo给出了肯定的答复,但Dan觉得拉卡约的回答有点儿“模棱两可”。事实上,医疗团队当时无法在文献中找到任何对应的病例。

Esther回忆到,她是在 2014 年 12 月的一个早晨带Andrew去急诊室治疗的。自那以后,她感觉仿佛处在一部恐怖电影之中,一个个离奇、邪恶的事件不断发生。用Esther自己的话说,她和丈夫在此之前一直过着“无灾无难的生活,一切都完美无缺”。很少有人会真心说自己没有经历过什么坏事,但Esther和Dan说,在诊断结果出来之前,他们的确如此。Andrew患病时,这对夫妇35岁左右,年富力强、活力四射,乐观开朗。他们都是斯坦福的毕业生,Dan的专业是工业工程,Esther主修人体生物、辅修舞蹈,两人的职业生涯也是一帆风顺。Dan先是创立了一家体育用品公司,之后又成为 Facebook 负责小企业的副总裁。Esther在Kurbo公司工作,这家创业公司主要专注于儿童体重管理业务;她也在一个犹太社区中心教授健身车课程,纯粹是为了娱乐。Dan和Esther各自的家庭也很稳定和团结。如果真要说两家发生过什么坏事的话,还要追溯至大屠杀时Dan的祖母一家不幸丧生的事。

在确诊之后,Andrew需要尽快进行造血干细胞移植。首先,医生需要通过化疗杀死Andrew骨髓中的白血病细胞,然后替换上捐赠者的造血干细胞。Andrew三岁的姐姐Lea和五岁的哥哥Wills都进行了捐赠测试。不幸之中的万幸是,检测结果表明,Wills是一名完全配对的捐赠者。Andrew随后接受了两疗程化疗,但在2015年2月进行移植时,Andrew体内仍有癌症的残留,给移植手术带来很大的失败风险。

Levy一家建了一个名叫“Helping Hands(援手)”的网站,朋友们可以在上面登记举行玩伴日或送餐(我的孩子和Wills同校,所以我们也进行了登记)。他们还建立了一个Facebook群,用来更新Andrew的病情,这个群一共有1700人加入。但尽管受到了这样的支持,但Esther说,她还是感到了深深的“孤单”。Esther之前的生活全部消失不见了:她一直住在Andrew的病房,睡在一张可以变成硬床的沙发上;她不得不离开工作和其它家人,Dan则需要继续工作和在家照顾Wills和Lea。Esther的夜晚都会响起Andrew的哭声,白天则要拼命减轻疼痛和恶心对Andrew的折磨、清理呕吐物、抽血的时候按着Andrew、以及做一些艰难的医疗选择。如果Esther离开几分钟,即使是去厕所或洗澡,Andrew都会嚎啕大哭。

就这样在医院住了三个月之后,Levy全家搬进了一个附近的公寓,以生活在一个可以保持完全干净的小空间内,等待Andrew的免疫系统自己恢复。Esther依然担任Andrew的全职护士,负责令人眼花的药物和无菌更换静脉注射。当年四月份进行的骨髓测试结果表明,没有了癌症的迹象,Andrew被视为进入了缓解期。他们上传了一段视频,其中Andrew在敲鼓、用Elmo玩具唱歌、并假装在打高尔夫。

他们决定当Andrew病情恢复得足够好时,不会重返旧家、而是开始新的生活。他们在附近的艾瑟顿小镇找到一个英式乡下庄园,周围被灌木丛和白色蔷薇环绕,一派安详宁静之气。Andrew当时过于脆弱,还不能离开原来的公寓,所以Esther不能去亲自看房,但Levy夫妇还是买下了这处房产,Esther还和装修设计师朋友商量好,要为Andrew做一间飞机主题的房间。

但在6月19日,医疗团队却再次告诉了Esther和Dan一个坏消息:Andrew的癌症卷土重来了。医生解释道,细胞数量不多,但最终不可避免会增长。该团队拿出了新的治疗方案:再次化疗,为第二次骨髓移植做准备,这回可能会用脐带血。

“老天爷啊,”Esther双手抱头哀叹道,她感觉自己已经无法再这样重新经历一次,而且也没有理由相信该疗法会有效。第一次移植成功的概率就十分渺茫,第二次将更会如此。“但我们肯定会百分之百的遭受更多痛苦,”Esther这样告诉我。

从第一次诊断开始,Dan已经决定他们的目标不仅是帮助Andrew活下来,同时也要保住这个家的完整性。他们认为Andrew将会在医院去世,因此重返医院“从根本上打破了我们对自己和孩子的承诺——我们会重新团聚,”Dan告诉我。他觉得家庭刚开始从几个月的分离中恢复。“如果再次分离、重揭伤疤,这次事件的情感创伤将会不可修复。”他们决定停止治疗,搬到新家,让Andrew在余生中和Wills、Lea在游泳池中玩水、在草坪上打闹。

医生们惊呆了。“我爱你们、也爱Andrew,我们不打算放弃,”负责移植的儿科肿瘤专家Jennifer Willert不假思索地脱口而出。Lacayo和Willert进行了争论,主要针对是否至少进行姑息性化疗来延长Andrew的生命。Esther和Dan犹豫了一下,但最终还是拒绝了。他们给装修师朋友打电话,告诉她想继续装修Andrew的新房间。这位装修师是第一批知道Andrew将要离世的人。

6月22日,Levy一家发文章写出了他们做出的决定。他们解释了自己的想法,请求他们的朋友不要质疑他们的选择、推荐新疗法、告诉他们上帝的旨意或者坚持认为希望依然存在。Esther写道:“我真的相信,我找到了界定父母职责的全新视角——重要的不是生命的长度,而是生命的质量。我们想把关注点集中到质量上。

不过事实证明,在劫难逃的孩子无法度过有质量的时光。癌细胞的数量还很少,没有让Andrew感到难受,但Esther在帖子中写道:“我觉得和即将死去的孩子待在一起是世界上最痛苦的事情。”父母养育孩子是有目的的,他们希望孩子能够长大成人。可是他们现在对Andrew的目标是什么呢?“我无法正常地将他抚养成人,”Esther写道。她应该让他吃垃圾食品或者整天用iPad观看视频吗?这样又能起到什么作用吗?

他的哥哥姐姐也提出了一些令人感到痛苦的问题。Lea想知道他们能否像对待自己那样,在Andrew 4 岁时给他买某种玩具。Wills想知道,既然他们知道Andrew会一直病下去,为什么他们还要生Andrew。

Dan为他们读了Mo Willems所写的关于一只不耐烦的大象的书《等待并不容易》(Waiting Is Not Easy!)。他在阅读时想到了之前九个月他们所经历的痛苦等待过程。他们等待获得正确的诊断,等待移植细胞的百日生长,等待骨髓检测中癌细胞是否消失的结果。Dan在Facebook上写道:“现在我们不再有诊断, 不再有检测,不再有阶段性目标。我们只能等待,也许几个小时,也许几天,也许几个星期。”他们在等待Andrew的死亡,这是最令人痛苦的

7月1日,他们搬到了新房子里,Andrew开始感到难受。到了周末放假的时候,他除了睡觉以外一直在痛苦地呻吟或尖叫。Dan向单位请了假。Esther一直在沙发或者床上抱着Andrew,他只能瘫在她的怀里。Dan需要把饭菜端到Esther身边,因为她无法一边抱着Andrew一边坐在餐桌上吃饭。由于巨大的压力,她开始掉头发。“这对他和我们来说都是难以忍受的,”Esther说。


Andrew正在和他的哥哥Wills摔跤。

临终关怀团队开始每天过来用高剂量的阿片类药物控制患者的痛苦。医院姑息治疗(palliative-care)计划医疗主任兼肿瘤医师Harvey Cohen向他们解释说,随着疾病的发展,Andrew将没有足够的血小板来凝血。一位临终关怀护士让他们为Andrew的婴儿床换上深色毛巾,以免当他的出血失去控制时,他的哥哥姐姐和父母受到过度惊吓。

7月的第二个星期,临终关怀团队告诉他们,Andrew快不行了,让他们做好准备。他们请了一位拉比(译注:希伯来语“老师”的意思,通常为主持犹太会堂的人)。考虑到Andrew喜欢飞机,他们在机场附近选了一处犹太墓地。他们不想让他死后太孤单,因此也为自己购买了墓地。他们成立了Andrew Levy纪念基金,用于为Lucile Packard儿童医院的音乐疗法筹集资金。

他们的医疗团队成员前来向Andrew告别。Andrew已经不吃东西了。他几乎一动不动,呼吸沉重刺耳,面色蜡黄,脸上露出了医疗团队非常熟悉的即将死去的孩子所特有的那种表情。有时,他会暂时停止呼吸,身体也变得有些僵硬,神情异常沮丧。“你可以安心地离开了(It’s O.K. for you to go)。”Esther对他说。她现在只想尽快结束这一切。

他们把Wills和Lea叫进了客厅——孩子们很少进入这个房间。Esther坐在沙发上,把他们拉到身边,Dan坐在地板上的垫子上。他们已经和伴随他们长大的医院心理医师Barbara Sourkes一起把要说的话进行过排练。他们对即将发生的谈话进行了录音,作为随后与Sourkes讨论的素材。

Dan告诉孩子们,移植获得了成功,Wills的细胞表现得很不错。不过,Andrew的细胞需要在某个时候独自发挥作用,而它们没能做到这一点。“他的身体不工作了,”Dan尽量用平静的语气说。

“Andrew会好起来吗?”Wills问道。

“医生们认为不会,Wills。”

Sourkes之前建议他们只告诉孩子们他们需要知道的事情,以免他们承受不了,因为孩子们需要一定的情感空间,他们需要以自己的方式来应对现实。Dan说:“所以,Andrew……Andrew某个时候会去世。我们不知道具体时间。”


Andrew和母亲Esther在加州斯坦福大学Bing幼儿园。人们曾经认为,Andrew不可能活到上幼儿园的年纪。

“我不想让Andrew死!”Lea边说边哭了起来。

Wills把运动衫的帽子拉下来盖在脸上。他说他不想谈论这件事。

“Andrew要死了,这意味着我们家只有四口人了,”Lea难过地说。她问爸爸妈妈,能不能再生一个宝宝,代替Andrew。她和Wills开始想像这个能让事情好起来的新宝宝。

Esther把话题拉回到了Andrew身上。“我保证,我向你们保证,我们不会忘记他的,”她说。“你们永远都有一个叫做Andrew的弟弟,因为不管是现在还是未来,他永远都是你们的弟弟。”

“我们心里永远都会爱着Andrew,”Lea说。随后,他们决定共同观看《米老鼠》。

他们对Andrew的看护持续到了夏天。随后,他们所说的“幻象(mirages)”开始出现了。7月下旬,Esther和Barbara Sourkes坐在屋子外面,Esther怀里抱着Andrew,看着Wills投篮。突然,Andrew坐起来,捡起一个球,成功地将其投进了自己的小篮框里。这使Esther和Barbara大为惊讶。

起初这种幻象非常短暂。Andrew会在Lea向他露出肚脐时笑起来,或者堆上10分钟积木,随后就会痛苦而懒散地重新瘫软下去,躺上一整天。不过,他活跃的时间很快开始变长。对Esther来说,这些幻象感觉上不像是奇迹,而是“邪恶的伎俩(evil tricks)”。她感到了强烈的愤怒。她说:“我想,我们还要忍受多少试炼呢?难道我们要被折磨死吗?”


Andrew Levy在加州阿瑟顿市的家里。

Esther开始向医疗团队发送视频。他们的肿瘤医师Lacayo回忆道:“Andrew吃披萨了,Andrew坐起来了,Andrew笑了。对此,我们惊讶得说不出话来。”

到了8月,当团队试图解释这一现象时,他们做出一个推测:在7月份,就在每个人都认为Andrew即将死于癌症的时候,他一定是得了某种严重的感染。这种感染现在已经过去了。但这并没有因此而改变疾病的预后:医生们强调,随着Andrew的新免疫系统逐渐控制局面,他可能会继续从感染中恢复过来,但癌细胞也会不断生长,最终将他吞噬。

验血结果显示,他的血小板数量偏低。之后,姑息护理医师科恩极力劝说他们接受输血,增加Andrew的血小板。这样一来,就算他会死,也不会因为流血过多而身亡。然而不可思议的是,到医院之后,Andrew的血小板数量居然比最后一次验血验出的血小板数量还要高,因此那天他根本没有必要接受输血。Dan建议给儿子一些维生素,Esther并不赞成。Dan似乎觉得,仅通过这么一次反常的验血结果,就意味着Andrew正在逐渐好转,而Esther说:“我不抱什么希望,我也不需要什么希望,这样我才能坚持下去。”接着,他们俩都向对方道了歉。

九月份的时候,Andrew重新开始下地走路。他的胃口、精力和深色的卷发都开始增长起来。Dan决定回去工作。Andrew两岁了——他的父母原来都没想过他可以活到这么大,而且他们认为,这将会是他最后一个生日。Esther回忆说,当时朋友们劝他们享受(和孩子在一起的)每一刻时光,而她告诉他们:“不,这是地狱,这糟透了。他仍然无法逃脱死亡的命运,此时此刻没有任何欢乐可言。”

最初Dan和Esther拿到Andrew的诊断书的时候,Esther告诉一名夜班护士,她只想和她那无忧无虑的小儿子再一起待上一小时。当时她不明白,一切延缓Andrew死亡的举措都仅仅只表明了一点:他们之后将会再次经受失去Andrew的痛苦。她在一篇帖子里写道:“而且随着Andrew的长大,随着他和我们之间的联系纽带日渐加深,每重复一次这样的经历,我们感受到的痛苦都会加深。”

十月份的时候,Andrew比之前一年更健康了,他和他的兄弟姐妹们一起跑步、打球。没有哪位医生看到过这样的康复病例。因此他们决定带Andrew回医院,对他进行骨髓检测。


Andrew 和他的父亲 Dan Levy 在加州阿瑟顿市的家里。

Michael Loken分析过Andrew的血液检查结果。他并不为Andrew癌症复发一事感到吃惊。Loken一直在写一篇关于R.A.M.的论文,而这种遗传标记正是Andrew身上所有的。他跟踪记录了另外19例拥有这种表型的孩子的情况。被诊断出拥有这种表型三年后,这些孩子里只有两个还健康地活在世上。这次,他从Andrew的骨髓中抽取了一份含有20万个细胞的样本进行了检查,结果令他起了一身鸡皮疙瘩。又抽取了一份含有50万个细胞的样本再一次进行了检查后,他叫来了Lacayo,宣布了一个惊人的消息:癌细胞消失了。

癌细胞怎么会自己消失呢?移植医生Jennifer Willert说:“这感觉有点像是一个奇迹。”其他人也抱有和她同样的想法。Loken罕见地说出了“奇迹”这个“不科学”的词,他说:“本来没有迹象显示会发生的事却发生了,这毫无疑问颠覆了我们原先的预期。我想,这或许就是奇迹吧。”

Andrew的医疗小组提出了一个科学解释。由于Andrew夏天的时候没有接受过任何治疗,所以问题的答案肯定就藏在Wills和Andrew之间的那场骨髓移植之中。医疗小组的主要理论是,七月份的时候差点害死Andrew的那场感染,致使他体内新的白细胞大量增加,增强了他的免疫反应。而能力得到增强的免疫系统不仅对抗攻击了Andrew的感染症状,而且还对他体内的癌细胞发起了攻击。

医生们推论认为,这一免疫反应在一定程度上是一种机缘巧合下的 意外 产物:癌症复发的时候,Andrew的新免疫系统恰巧变强了,有了消灭这些癌细胞的能力。移植之所以能起作用很关键的一点就在于,一些从被移植过来的骨髓中成长起来的白细胞——也就是 T 细胞——会攻击一切徘徊在体内的癌细胞,这种现象被称为“移植物抗白血病(graft versus leukemia)” 效应 。化疗很少能够全部消灭癌细胞,因此,人们相信,如果没有移植物抗白血病效应的话,癌症最终还是会复发的。人们常常会提到这一效应,把它当成所谓的免疫疗法(刺激病人自身的免疫系统,令其攻击癌细胞)的一种模式,并且广泛认为这是最有希望的一种新型癌症疗法。

此前,Willert做了一个违背斯坦福治疗方案的重要决定,决定增加Andrew获得强大的移植物抗白血病效应的机会。一般来说,一名白血病患者需要服用至少100 天(而且通常更久)免疫抑制药物,避免一种被称为“移植物抗宿主病(graft versus host disease)”的严重副作用——患上这种副作用的病人体内新生的 T 细胞不仅会攻击癌症细胞,而且会攻击病人的皮肤、肝脏和胃肠道。据说,骨髓移植的精髓要义,就是要在获得最大化的移植物抗白血病效应的同时,将移植物抗宿主病的副作用控制到最小化。

第60天的时候,目前在加州大学旧金山分校Benioff儿童医院工作的Willert建议早期快速减少Andrew服用免疫抑制药物的量,就像加州大学旧金山分校和其他一些地方所采取的措施一样。因为她觉得,这么做带来的好处远大于患上移植物抗宿主病的风险。“我极力争取说服他们,因为我看到过抛开免疫抑制药物、让细胞发挥自己的作用这种做法的效果,”她说,“毕竟那正是骨髓移植的全部重点所在!”

Esther和Dan违背医嘱,做出了最后的关键决定:他们下定决心终止治疗,让Andrew走向死亡。如果当时他们同意接受更多的化疗,这项治疗就会杀死Wills的细胞,杀死那些最终让Andrew得以幸存的细胞。

Barbara Sourkes告诉Levy夫妇:“如果你的孩子患上了会危及生命的疾病,你的生活就会发生一种无可挽回的转变。”Esther觉得这话说得很对。她原本一直觉得自己能够掌控自己的命运,但现在,她觉得自己的生活就像是一本小说。她发现,暂时停止Andrew走向死亡的脚步令她产生的感激之情,很难消除Andrew因疾病而委顿给她带来的痛苦之情。“我们是世界上最不幸的人中最幸运的人,”她说,“我真心这么觉得。”这个故事以一种无解谜题的姿态出现在她的面前。她回忆起先前别人告诉他们保持希望时她愤怒的心情。这个奇迹是否是在告诉她,之前他们的朋友是对的,希望永远存在?然而事实却是,只有放弃所有希望、接受Andrew的死亡才最终令Andrew活了下来

目前Esther还没有回去工作。她说:“我的全职工作是帮助孩子们恢复安全感。”但是现在,她自己都很难有安全感。接受移植后的两年是癌症最容易复发的一段时间,两年后癌症复发的几率就会大幅降低,五年后病人(如果还未复发癌症)就可以被认为是痊愈了。目前距离两年之期还有九个月的时间。

“被诊断患有这样一种疾病后,病人就只有两种状态:要么在生病,要么无法确定是否在生病,”之前Cohen曾告诉过他们,“要么他会很快死亡,那么情况就很确定了;要么他会继续活下去,而你将会一直活在希望和害怕之中,不断平衡这两种情绪。但是随着时间的推移,希望和害怕之间的平衡将会被打破。”

Esther说,之前她会为Andrew预约六个月以后的牙医,在不为未来担惊受怕时享受看顾Andrew的乐趣——她一直在以这样的方式测试自己的运气。只有在过去几周里,她才觉得自己摆脱了这种心态。她说:“一天一天地过去,我们也正在一点一点地允许自己流露出更多的庆祝喜悦之情。”◆

源于《The New York Times》WHEN DO YOU GIVE UP ON TREATING A CHILD WITH CANCER?

 

附英文原文:WHEN DO YOU GIVE UP ON TREATING A CHILD WITH CANCER?

By MELANIE THERNSTROM
MAY 12, 2016

Andrew Levy’s parents knew that the rare and deadly cancer in his blood could not be beaten, so they began to prepare for the worst. Then something mysterious happened.


Esther Levy follows Andrew in their yard. Credit Lucas Foglia for The New York Times

When Esther and Dan Levy’s son Andrew was 14 months old, he received a diagnosis of a kind of leukemia so rare that their medical team said getting it was like being bitten by a shark and struck by lightning at the same time.

Leukemia, a cancer of those cells in the bone marrow that produce new blood cells, has many varieties, but the most common type in children, acute lymphocytic leukemia, is largely curable. Andrew’s cancer, however, a subtype of acute megakaryoblastic leukemia (AMKL), affects only about 45 children a year nationwide and is much more difficult to treat. The odds of surviving this type of AMKL are roughly even — unless the child is one of a handful who happen to have a particular genotype, in which case these odds plummet to a mere one in 10. Genetic analysis revealed that Andrew was in this tiny group.

There was more bad news. Two weeks after the diagnosis, Andrew’s doctor, Norman Lacayo, an oncologist at Lucile Packard Children’s Hospital at Stanford University, received an urgent call from Michael Loken, the president of Hematologics Inc., a Seattle lab that was analyzing Andrew’s cells. Loken had recently discovered that a small percentage of children with AMKL had a specific phenotype — a pattern of proteins on the surface of the leukemia cell he called R.A.M. (a former patient’s initials) — that independently predicted a terrible outcome, with a survival rate of about one in six. Andrew had this phenotype too.

“Has anyone ever survived this kind of cancer?” Dan asked Lacayo. “All I wanted to know is that it was not impossible,” Dan recalls. Lacayo said yes, but Dan felt his answer was “foggy.” The truth was that the team couldn’t find a single equivalent case in the literature.

Beginning on that December morning in 2014 when Esther took Andrew to the E.R., she recalls, she felt as if they had stepped into a horror movie, the unfolding events both surreal and evil. Up to that point, Esther and Dan had led, in her words, “charmed lives — picture perfect.” Only a small subset of people would sincerely say that nothing truly bad has ever happened to them; before the diagnosis, Esther and Dan say, they were among them. When Andrew got sick, they were in their mid-30s and energetic, optimistic and extroverted. They had both attended Stanford — Dan majored in industrial engineering, Esther in human biology, with a minor in dance — before going on to successful careers. Dan founded a sports-related start-up, then became vice president of small business at Facebook, while Esther worked at Kurbo, a start-up focused on weight management for kids, and taught spin classes at a Jewish community center for fun. Their own families were stable and close-knit; to recall any true adversity in either family, they had to think back to a grandmother of Dan’s whose family perished in the Holocaust.

Once Andrew’s illness was diagnosed, he needed a bone-marrow transplant as swiftly as possible. First the doctors had to kill the leukemic cells in Andrew’s bone marrow with chemotherapy, then replace them with a donor’s cells. Andrew’s 3-year-old sister, Lea, and his 5-year-old brother, Wills, were tested, and in the family’s first bit of luck since the diagnosis, Wills turned out to be a perfect donor match. Andrew underwent two rounds of chemotherapy, but there were still traces of cancer when the transplant was performed in February 2015, putting the outcome at high risk of failure.

The Levys had created a Lotsa Helping Hands website, where friends signed up to host play dates or deliver meals (as did our family because our children were in the same school as Wills), and a Facebook group for updates on Andrew’s illness, which 1,700 people joined. But despite all the support, Esther felt deeply “alone with the experience,” she says. Her former life had vanished: She was living in Andrew’s hospital room, sleeping on a sofa that opened into a hard bed. She had left her job and the rest of her family while Dan continued to work and live at home with Wills and Lea. Her nights were punctured by Andrew’s cries; her days were spent frantically trying to distract him from his pain and nausea, cleaning up his vomit, holding him down during blood draws and making stressful medical decisions. He screamed if she left him for a few minutes, even to use the bathroom or shower.

After Esther and Andrew spent three months in the hospital, the entire family moved into a nearby apartment, in order to live in a smaller space they could keep immaculately clean while waiting for Andrew’s new immune system to develop. Esther remained Andrew’s full-time nurse, responsible for a dizzyingly complex regimen of medications and sterile changes of the IV. A bone-marrow test that April showed no traces of cancer, and Andrew was considered to be in remission. They posted videos of him banging on his drums and singing with his toy Elmo and pretending to play golf.

They decided that when Andrew was well enough, they would not return to their old home but begin a new life. They found a house in the nearby town of Atherton in the style of an English country manor, encircled by hedges and white rose bushes, that suggested privacy and safety. Andrew was too vulnerable to leave the apartment, so Esther could not go to see the house in person, but they bought it anyway, and she made plans with a decorator friend to create an airplane-themed room for Andrew.

But on June 19, the medical team told Esther and Dan that there was bad news again: Andrew’s cancer had returned. The number of cells was small but would inevitably grow, the doctors explained. The team presented a new plan: They would begin chemotherapy again in preparation for a second bone-marrow transplant, perhaps using cord blood this time.

“Oh, God,” Esther said, putting her head in her hands. She felt she could not go through it all again. And there was no reason to think it would work. The odds of success during the first transplant had been long; in a second attempt, they would be much more so. “But the odds that it would cause all of us more suffering were 100 percent,” she told me.

From the initial diagnosis, Dan had determined that their goal was not simply to help Andrew survive but to keep the family intact. To choose to move back into the hospital, where they believed Andrew would die, was “a fundamental violation of every promise we made to ourselves and our kids that we would be together again,” he told me. He felt the family had just started to heal from the months of separation. “The emotional scars of the experience,” he said, “would be irreparable if we ripped them open and split our family apart again.” They decided to stop treatment. They would move to their new house, where Andrew would spend whatever time he had splashing in their swimming pool and playing in the grass with Wills and Lea.

The doctors were stunned. “We love you, and we love Andrew and we’re not ready to give up,” Jennifer Willert, the pediatric oncologist in charge of the transplant, blurted out. Lacayo and Willert argued for at least trying some palliative chemotherapy to prolong Andrew’s life. Esther and Dan hesitated but ultimately declined. They called their decorator friend and told her to return the furniture for Andrew’s new room. She was one of the first people to whom they told the news: Andrew was going to die.

The Levys posted the news of their decision on June 22. They explained their thinking and asked their friends not to question their choices, recommend new treatment options, tell them about God’s plan or insist that there was hope. “I truly believe that I have a new way of looking at parenting — it is not about the length of life that matters, but the quality of life,” Esther wrote. “We are going to focus on quality.”

But quality time with a doomed child turned out to be impossible. The cancer cells were few enough that they were not yet making Andrew sick, but, Esther posted, “I can’t think of anything more painful than spending time with your precious baby knowing that he is going to die soon.” Parenting is teleological; parents rear a child to become an adult. What were their goals for Andrew now? “I am no longer ‘raising’ him to grow up to be a wonderful human being,” Esther wrote. Should she let him eat junk food or watch videos on the iPad all day? Did it matter?

Their older kids asked tormenting questions. Lea wanted to know whether they could buy Andrew a certain toy when he was 4 years old like her. Wills wanted to know why they had Andrew if they knew he was going to be sick all the time.

Dan read them Mo Willems’s book “Waiting Is Not Easy!” about an impatient elephant. As he read, he thought about the waiting that had engulfed them over the previous nine months. They had waited to get the right diagnosis; they had waited 100 days for the transplanted cells to grow; they had waited for the results from the bone-marrow tests to see if the cancer was gone. “Now there are no more diagnoses,” Dan wrote on Facebook. “No more tests. And no more milestones. But there is waiting. Maybe hours, or days, or weeks.” This was the most agonizing of all: the wait for Andrew’s death.

On July 1, they moved into their new house, and Andrew became sick. By the holiday weekend, he was moaning or screaming in pain whenever he was awake. Dan took a leave of absence from work. Esther held Andrew at all times, his body draped over hers on the couch or the bed. Dan took food to her because she couldn’t hold him and sit up at the dinner table. Her hair began to fall out because of the stress. “It was unbearable for him and for us,” she says.


Andrew wrestles with his older brother, Wills.

The hospice team began to come every day to try to control the pain with high doses of opioids. Harvey Cohen, an oncologist and the medical director of the hospital’s palliative-care program, explained to them that as the disease progressed, Andrew would not have enough platelets for his blood to clot. A hospice nurse told them to buy dark towels for Andrew’s crib, so that if he started to bleed uncontrollably, the sight would be less frightening for his siblings and for them.

During the second week of July, the hospice team told them to prepare for Andrew’s imminent death. They called a rabbi, and thinking about how Andrew loved airplanes, they picked a Jewish cemetery near the airport. Not wanting him to be buried alone, they purchased grave sites for themselves as well. They established an Andrew Levy Memorial Fund to raise money for music therapy at the Lucile Packard Children’s Hospital.

The members of their medical team visited their home to say goodbye. Andrew had stopped eating. He was barely moving, his breathing raspy and his complexion sallow, with the particular look the team knew from other dying children. Sometimes he stopped breathing momentarily, and his body would become rigid, and his face turn blue. “It’s O.K. for you to go,” Esther told him. All she wanted now was for this to end quickly.

They called Wills and Lea into the living room — a room the kids rarely entered. Esther pulled them close to her on the couch, and Dan sat on a cushion on the floor. They had rehearsed what they were going to say with Barbara Sourkes, a hospital psychiatrist with whom they had grown close, and they made an audio recording of this moment in case they needed to discuss it with her later.

Dan told the children that the transplant had been a success, and that Wills’s cells had done a great job, but that Andrew’s cells needed to work on their own at some point, and they weren’t. “His body is just not working,” he said, as straightforwardly as he could manage.

“Is Andrew going to get better?” Wills asked.

“The doctors don’t think so, Wills. No.”

Sourkes had advised them to tell the children only what they needed to know so as not to overwhelm them, because the children needed emotional space to process things their own way. “So Andrew — Andrew is going to die at some point,” Dan said. “We don’t know when.”


Andrew and his mother, Esther, at Bing Nursery School in Stanford, Calif. It once seemed unlikely that Andrew would live long enough to attend.

“I don’t like that Andrew is going to die!” Lea exclaimed and started crying.

Wills pulled the hood of his sweatshirt over his face and said he didn’t want to talk about it.

“Andrew is going to die, so that means we are only going to have four people in our family,” Lea said unhappily. She asked if they could get a new baby to replace Andrew, and she and Wills began to fantasize about a new baby who would make everything all better.

Esther returned to Andrew. “I promise, I promise you, we are not going to forget him,” she said. “You are always going to have a brother named Andrew because he is always your brother, now and forever.”

“Andrew’s pieces of love will always be in our heart,” Lea said, and then they all agreed to watch Mickey Mouse together.

The vigil stretched on through the summer, and what they called “mirages” began to appear. In late July, Esther was sitting outside with Barbara Sourkes, holding Andrew and watching Wills shoot baskets. Suddenly Andrew sat up and reached for a ball and managed to throw it through his own little basketball hoop. Esther and Barbara were speechless.

At first the mirages were brief — Andrew would laugh when Lea showed him her bellybutton or would stack blocks for 10 minutes — and then he would lapse back into pained lethargy for the rest of the day. But soon these episodes began to lengthen. For Esther, the mirages did not feel like miracles but “evil tricks.” She went through intense surges of anger. “I felt like, How many trials are we going to have to endure?” she says. “Are we being spared nothing?”


Andrew Levy at home in Atherton, Calif.

Esther started sending the medical team videos. “Andrew is eating pizza, Andrew is sitting up, Andrew is laughing,” Lacayo, their oncologist, recounts. “And we are like, What?”

In August, as the team struggled to account for what was happening, they theorized that in July, when everyone assumed Andrew was dying of cancer, he must have had a terrible infection instead, which passed. It didn’t change the prognosis: The doctors stressed that, while Andrew might continue to recover from that infection as his new immune system took hold, the cancer cells were also growing and would eventually overwhelm him.

After a blood test showed that his platelets were low, Cohen, the palliative-care doctor, urged them to accept transfusions to increase Andrew’s platelets so that, even though he was going to die, it would not be from bleeding to death. But at the hospital, it turned out, mysteriously, that Andrew had more platelets than at his last blood test, so there was no need for a transfusion that day. When Dan suggested giving him vitamins, Esther snapped at him. He seemed to be taking the anomalous blood test to mean Andrew was getting better, when, she says, “I had no hope, and I needed not to have hope in order to function.” And then they both apologized.

In September, Andrew began to walk again, and his appetite and energy and dark curls grew. Dan decided to return to work. Andrew turned 2 — a birthday his parents had never thought he would reach and knew would be his last. Esther recalls how friends urged them to enjoy every moment, and how she would tell them: “No, this is hell, and it sucks. He is still going to die, so there is nothing joyous about this time.”

When they first got Andrew’s diagnosis, she told a night nurse that she just wanted to get her happy-go-lucky little boy back for a single hour. She had not understood then that any reprieve would only mean that they would have to go through losing him all over again — “and each return will be harder than the last as Andrew grows and bonds with us,” she wrote in a post.

By October, Andrew was healthier than he had been in a year, running and playing ball with his siblings. None of the doctors had ever seen this kind of recovery before. They decided to bring him back to the hospital for a bone-marrow test.


Andrew and his father, Dan Levy, at their home in Atherton, Calif.

Michael Loken, who had analyzed Andrew’s blood work, had not been surprised that Andrew’s cancer returned. He had been working on a paper about R.A.M., the genetic marker that Andrew had. He had tracked 19 other cases of children with the phenotype; three years after the diagnosis, only two were still alive and healthy. When he examined Andrew’s marrow this time, using a sample of 200,000 cells, he got goose bumps. He repeated the test with 500,000 cells. Then he called Lacayo with the news. The cancer had disappeared.

How could cancer spontaneously disappear? “It does feel a bit like a miracle,” says Jennifer Willert, the transplant doctor, echoing the sentiments of others. Noting the rare evocation of a concept that stands outside science, Loken says: “It certainly defied our expectations with no discernible basis of happening. I guess this may be the definition of a miracle.”

The medical team grasped for a scientific explanation. Because Andrew had received no treatment over the summer, the answer had to lie in the bone-marrow transplant of Wills’s cells. Their main theory was that the infection that nearly killed Andrew in July had triggered a huge increase in his new white blood cells — and that heightened immune response had attacked not only the infection but the cancer cells as well.

The doctors theorized that the response was partly a product of timing: The cancer had returned just as Andrew’s new immune system grew strong enough to destroy the cancer cells. A critical part of why transplants work is that some of the white blood cells, the T cells, that grow from the transplanted bone marrow will attack any lingering cancer cells, an effect known as graft versus leukemia. Chemotherapy rarely kills every last cancer cell, so it is believed that without graft versus leukemia, the cancer will eventually grow back. This is often spoken of as a model of so-called immunotherapy — stimulating the patient’s own immune system to attack cancer cells — which is widely regarded as one of the most promising avenues for cancer treatment.

Willert had made a key decision to depart from Stanford’s protocol to increase Andrew’s chances of getting a robust graft versus leukemia effect. Typically, a leukemia patient receives immune-suppressing drugs for at least 100 days (and often much longer) in order to avoid a serious side effect called graft versus host disease, in which new T cells attack not only the cancer cells but also the patient’s skin, liver and gastrointestinal tract. The art of a transplant is said to be maximizing graft versus leukemia while minimizing graft versus host.

Willert, who is now at the University of California, San Francisco, Benioff Children’s Hospital, had advocated a rapid early taper of Andrew’s immune-suppressing drugs on Day 60, as is the practice at U.C.S.F. and other places, because she felt that the benefits outweighed the risk of graft versus host. “I fought for it because I have seen the power of getting rid of immune suppressants and letting the cells do their job,” she says. “After all, that’s the whole point of a transplant!”

The final, critical decision was made against medical advice: Esther and Dan’s resolution to stop treatment and let Andrew die. Had they permitted more chemotherapy, the treatment would have killed Wills’s cells, which were what ultimately enabled Andrew to live.

When you have a child with a life-threatening illness, you have an irrevocably altered existence,” Barbara Sourkes had told the Levys, and Esther feels that is true. She had always felt in control of her fate, but now she believes this to be a fiction. She finds it difficult to reconcile bitterness over the blight of Andrew’s illness with gratitude for the reprieve. “We are the luckiest of the unluckiest people in the world,” she says. “I truly believe that.” The story presents itself to her as a riddle that cannot be resolved. She recalls her anger when others told them to hope. Is the lesson that their friends were right and there is always hope? Yet it was only by letting go of hope and accepting Andrew’s death that he lived.

She has not returned to work. “My full-time job is to help the kids feel safe again,” she says. But it is hard for her to feel safe. The two years after a transplant are the riskiest time for a relapse; after two years that likelihood plummets, and after five years, a patient is considered cured. The two-year mark is still nine months away.

“There are only two states after such a diagnosis: disease and uncertainty,” Cohen had told them. “Either he will die soon, and that’s certain — or he will continue on, and you will live with that constant balance of hope and fear. But the balance will change as time goes on.”

Only in the past few weeks, Esther says, has she been able to feel that she isn’t testing fate by scheduling a dentist appointment for Andrew six months out or by feeling moments of joy watching him without being shadowed by fear of the future. “Day by day,” she says, "we are allowing ourselves to celebrate a little more." ◆

from  The New York Times THE HEALTH ISSUE - THE NEW ANATOMY OF CANCER

 

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