On March 6, ten-year-old YangYang arrived at Daisy’s Home, as the 21st child admitted.
Daisy’s Home is the first hospice for children in Beijing. Hospice care (or more accurately, palliative care including hospice care services) refers to the physical, psychological and social services provided to patients and their families, beginning from when the patient is diagnosed with terminal disease.
Since the establishment of the country’s first hospice care agency in 1987, hospice care services have been gradually developing. Most services are aimed at adults, especially the elderly. But many don’t consider that children reaching the end of their lives also need these services.
The nightmare started at the end of last year. YangYang had been crying about having terrible stomach aches, so his mother, Xu Hua, took him to local hospitals. At first, he was diagnosed with appendicitis, but after having appendix surgery, he didn’t seem to get better.
With no other option left, YangYang and his parents travelled to Beijing to seek medical treatment in February this year. YangYang’s new diagnosis was nothing they had been expecting: neuroblastoma.
Neuroblastoma, one of the most common childhood malignant tumors, is a deadly cancer. And worse, many patients are only diagnosed when they have already reached an advanced stage.
In the ten days since arriving at Beijing, YangYang’s situation worsened drastically. He was in pain everyday, unable to sleep, lay down, or sit up. YangYang’s mom, Xu Hua, cried when she said: “When I see him in pain, I feel pain too.”
The doctor told YangYang’s parents he can receive chemotherapy, but the cure rate is low. And if it does improve his situation, he may still only live for another one to two years.
After seeing their child’s pain, YangYang’s parents let him stay at Daisy Home. “I don’t care how much time is left, I just want him to feel better,” Xu Hua explained, her eyes red from crying.
Xu Hua said that YangYang longed to go back to school because he missed his classmates. One night, he hid under the blanket and suddenly cried.
There's Just Not Enough Time
On March 15, another fever came fast and showed no sign of subsiding. After asking about YangYang’s symptoms and examining his condition, Zhou Xuan (YangYang’s doctor and the chief physician of the Hematology Oncology Center of Beijing Children’s Hospital) urged his parents to switch to the analgesic pump (pain relief without losing consciousness, unlike anesthesia) to let YangYang control his pain.
Pain management is a key part of palliative care for children. Without pain relief, one shouldn’t even think about the other steps to take for the treatment.
YangYang’s terminal illness and chemotherapy caused him excruciating pain, sometimes unbearable to the point that he couldn’t fall asleep. Instead, he falls into an endless cycle of crying.
Thankfully, after his analgesia treatment, YangYang’s pain receded, and he could finally sit up again. Volunteers came in almost every day to help with his daily tasks and play games with him. YangYang would turn and smile at his mom from time to time; her presence comforted him.
Volunteer Sun Yang says that when he spends time with parents, he just tries to listen; parents often have many emotions bottled up inside, possibly because they want to be strong for their child, so it’s best to let them talk naturally and open up. But it’s important to make sure this is done at their own pace.
Xu Hua reveals that she deeply regrets scolding YangYang when he had done poorly on his final exam. “Right now, he can’t understand why I would want to scold him. He’ll understand when he’s older, but I don’t think we have the time for him to reach that age.” Her voice trembled as she spoke.
How Do You Explain Death?
Should you talk about death to your children? If yes, then how should you go about it? This question is a hurdle that many parents of dying children must face, one that YangYang’s parents are currently facing.
A week into their stay at Daisy’s Home, YangYang asked his parents, “Why don’t I have to be examined for my treatment here?”. They knew he had sensed something was different, but they didn’t know how to even begin to give an explanation.
Zhou Xuan explains that children over the age of 10 can feel the atmosphere around them change. Just because doctors and parents don’t say anything, doesn’t mean that children don’t know what’s going on. Avoiding their questions and giving them vague information only causes them to become more fearful. Younger children may not quite grasp the idea of death, but they still hope to be relieved of their pain.
Sun Yang told YangYang’s parents they should maintain a non-evasive attitude. If the child asks, don’t refute and treat it as nothing. He said, “You can ask him, ‘Why do you think you are going to die? How do you think death will happen?’, and guide him to find his own answer.” The ideal way for a child to accept death is naturally; however, not all children will be able to. But still, let them draw their own conclusion, instead of forcibly giving them an answer.
There’s no right or wrong decision over whether or not a parent should explain death to their child. But if they do choose to, they should let their child know that they will always be there with them, every step of the way, and to not be afraid.
Life Must Go On
On April 2, YangYang’s legs started hurting again, and his condition deteriorated day by day. Ward supervisor Cao Ying said that in order to control his pain, they increased the analgesia.Yangyang can no longer get out of bed.
It took some time for YangYang’s parents to accept that he was nearing his end. For a while, they tried to prevent thoughts of his upcoming death from entering their minds. But gradually, they were forced to come to terms with it.
Cao Ying felt that Xu Hua’s mentality changed. When she first checked into Daisy’s Home, she always quarreled with her husband. Now, Xu Hua has learned to see from his position, and no longer argues with him; instead, they talk calmly. This may be from her realization that she needs to cherish those around her before it’s too late.
After three weeks since their arrival at Daisy’s Home, Xu Hua, YangYang’s mom, asked Cao Ying, for the first time, how she should prepare for YangYang’s funeral when the time comes.
YangYang’s father Yang Qi said his whole life had revolved around his child. He hasn’t thought about his life after YangYang’s funeral. But he does know that he wants to take better care of those around him, while he still can.
Right now, Xu Hua and Yang Qi are still in Beijing with YangYang. Having both quit their jobs to be with YangYang in Daisy’s Home, the two know that returning to their normal lives afterward will be jarring and messy—not to mention, filled by YangYang’s lingering absence, a permanent empty space in their home. But Xu Hua explains that although she doesn’t know how to start a new life without YangYang, her life must go on. They must for YangYang and themselves.