发烧不会退出
It started out as a fever duringflu season在一月。我十几岁的儿子蒂姆（Tim）抱怨疼痛和痛苦 - 流感对流感的平凡没有什么。
四天没有改变后，我们预约去当地诊所见他的初级保健医生。两天后，他所有的呼吸道病毒测试都恢复了阴性，他的发烧仍在继续。
经过day seven his mom and I began to worry that he might have a serious bacterial infection, since he showed noflu symptoms。The three of us drove to the urgent care clinic in Sacramento, California, where the doctor directed us to take him directly to the emergency room at the加州大学戴维斯分校医疗中心。
活检，测试和扫描
The emergency room doctors quickly realized they didn’t have the resources to diagnose or treat Tim. The ER doctor, in consultation with the on-call pediatric team, admitted him to the hospital.
尽管持续全剂量对乙酰氨基酚每四到六个小时。在那段时间里，他接受了许多测试，biopsies， 和scans, which showed lesions and nodules in his liver, right lung, and skin. His spleen and liver were swollen, and his blood counts were erratic.
We hit a particularly rough patch as Tim prepared for an超声-guided liver活检。He couldn’t have any food or fluid by mouth after midnight. What was supposed to be an early morning procedure didn’t happen until midafternoon. By then Tim’s fever had spiked to over 105 degrees.
He looked pale and despondent, desperately parched. His mom and I soaked towels in ice water in an attempt to cool him down. Finally, the surgical team rolled him to the operating area and gave him anesthesia and a dose of对乙酰氨基酚通过他的静脉注射线。一旦他们把他带进去，我叹了口气。
It didn’t take a doctor to know that something was terribly wrong — but what?
癌症，感染或自身免疫性疾病？
各种医生团队，包括传染病，皮肤病学，普通儿科和免疫学的专家 - 巡回演出。小儿血液学和肿瘤学团队领先。我们被问到有关家庭突然死亡，前往国外或可能暴露于有害物质或疾病的问题。
Every “no” answer led to more questions and confusion. One morning they informed us that Tim either had cancer, a systemic infection, or an autoimmune disorder. A thick fog fell over our family as we contemplated the seriousness of his condition.
在整个住院期间，我的妻子洛里（Lori）和蒂姆（Tim）在一起。我的哮喘，psoriasis， 和湿疹only worsened in the dry, heated, sterile air of the hospital. The stress of Tim’s care, lack of sleep, and the 30-minute drive from home to hospital took a toll as well.
有关的：克服牛皮癣耀斑
我要求下班两个星期。我的全职工作成为照顾我的两个女儿，在医院提供帮助，并运送衣服，食物以及我儿子要求的其他东西。我们教堂的朋友帮助吃饭和购物。我们处于完全危机模式。
医生最终将癌症作为可能的诊断，这是一种巨大的缓解。但是他们不能排除系统性真菌感染。同时，他们向辛辛那提儿童医院寄了一瓶蒂姆的血液进行测试。肝脏活检幻灯片去了加州大学洛杉矶分校的医疗中心。以及来自加州大学旧金山加州大学医疗中心被咨询。蒂姆每天晚上都会有抗真菌输液。
令人恐惧的诊断：HLH
蒂姆发烧开始差不多三周，一名免疫学家告诉我们，多学科团队已经进行了暂定诊断：hemophagocytic lymphohistiocytosis, or HLH。He told my wife to Google HLH and look at the more reputable medical websites. One of the first pages we visited was for Cincinnati Children’s Hospital’s HLH Center of Excellence. We read: “Hemophagocytic lymphohistiocytosis (HLH)是免疫系统的一种罕见疾病，导致不受控制的炎症会损害导致快速死亡的人体器官。可以治愈，但需要进行准确，快速的诊断。”
我在HLH上读到的其他一些文章并没有激发信心。诸如“威胁生命”和“致命”之类的词在我的脑海中响起。失去孩子HLH的父母谈到他们的被告知癌症是比HLH更容易治疗的。
幸运的是，我们的医生告诉我们，蒂姆患有相对轻度的病例，很可能是由病毒感染引发的。当蒂姆开始接受高剂量全身类固醇治疗的两天后，我开始相信他们，他的发烧终于破裂了。
在医院工作18天后，蒂姆收到了他的出院文书工作。前一天，他收到了第一次化疗输液和药物清单。该计划是让家庭医疗保健护士每周两次来我们家抽血。我们还需要将蒂姆带到加州大学戴维斯分校医疗中心的儿科癌症中心每个星期二的输注，并与儿科血液学家进行后续约会肿瘤学家every two weeks.
‘One Day, One Step at a Time’
Tim’s journey was far from finished. His blood counts were slowly normalizing, thanks to a number of blood transfusions along the way. ACT scanshowed amazing shrinkage of the nodules in his right lung. But I couldn’t help but wonder, what was next? What were the chances of HLH recurring? Would Tim developleukemia或者lymphomafrom the treatments or the disease?
我们的家人定居一个新的例行程序。我们自由使用医疗术语和诸如“纤维蛋白原” and “ANC” (absolute neutrophil count）。然后是每天两次的药物治疗方案。我们观察到震颤，瘀伤，低血分计数，脱发和体重增加等副作用是否会改善或恶化。我们考虑过生活是否会一样：包括蒂姆的病，我们家庭中五分之四的成员现在患有慢性或严重的医疗状况。
I’ll never forget what Tim’s pediatric nurse told me as I peppered her with questions: “One day, one step at a time, Mr. Chang.” Every parent on that floor no doubt needed to hear that.
这些话仍然留在我身边。如果今天上帝给我儿子给我的东西，那我将在我祈祷的时候珍惜我会珍惜的。
You can read more about my experiences in my blog for Everyday Health and on my网站。
重要的：本文中表达的观点和观点是作者而非日常健康的观点。
