Pineapple: How Should Parents of Children with Tumors Learn Without a Medical Background?

Source: Sunflower Children

Author: Li Zhizhong

Editor: Yangyuan

Date: December 31, 2023

The overall cure rate for childhood cancer far exceeds that of adult cancer! The overall five-year survival rate at top medical centers has surpassed 80%, and for conditions like childhood acute lymphoblastic leukemia, Hodgkin lymphoma, and Wilms tumor, the survival rates are even higher than 90%!

Childhood cancer does not equate to a death sentence, but the prerequisite is that parents should be well-informed and not take detours.

Before their child falls ill, parents usually do not consider the possibility of being affected and certainly do not set out to learn about childhood cancer knowledge. This is quite normal. However, a prolonged lack of knowledge can lead to anxiety and fear, impact communication with doctors and the child, and make one susceptible to misleading information from various "well-meaning" individuals, or even to fall into the hands of scammers, regretting it later.

So what should parents do to learn about childhood tumors? With cancer knowledge and online information being so complex, where should they start? Today, I would like to share some personal suggestions.

First, let’s clarify one point: there are no shortcuts to any endeavor. It is impossible to become an expert on childhood cancer just a few weeks after a diagnosis!

Our real goal is to significantly improve our understanding of the specific type of tumor affecting our child through a few weeks to a few months of study, eliminate fear and confusion, and achieve more effective communication with doctors to make the best treatment decisions. This is entirely achievable!

What should we do specifically? I suggest dividing the process into four stages.

Stage One: Beginner Level

Learn the basic knowledge of cancer

The goal of this stage is to understand: What kind of disease is cancer?

I do not recommend starting with a broad online search using keywords like "childhood XX cancer," as at this stage, you cannot evaluate which information is accurate or relevant, leading to a waste of time.

The most effective method is to read a few popular science books on cancer to systematically understand what cancer is and what recent advancements have been made. Specific titles can include "The Truth About Cancer" by Pineapple, or recommendations from patients or experts. Anything reliable will do.

Generally, after reading a few books, parents should have a basic understanding and feel less anxious. At this point, you should have a new understanding of what cancer is, grasp the difference between benign and malignant tumors, understand how cancer is staged, why cancer does not mean a death sentence, what chemotherapy and radiation therapy are, and why it is important for patients to eat well, among other topics.

Stage Two: Intermediate Level

Learn specific knowledge about childhood cancer

The goal of this stage is to understand: What specific type of cancer does my child have?

After gaining a general understanding of cancer, the next step is to learn about the specific type of cancer affecting your child. For parents of children with leukemia, learn about childhood leukemia; for those with solid tumors, study about solid tumors.

This stage is very important and requires a slower, more in-depth reading! Each type of childhood cancer is quite different in terms of biological characteristics, risk levels, and treatment methods.

Every parent should reach this stage to avoid asking the doctor questions like: “Is there still hope for my child?” or “Why do families with leukemia only use chemotherapy while we need a transplant?”

The first option is to search online. However, it is crucial to pay attention to the source of information; do not only look at the article’s click rate, as some may be clickbait marketing accounts. Instead, prioritize professional medical information platforms with references, such as the "Sunflower Children" website, official accounts, or mini-programs.

Sunflower Children Science Website: www.curekids.cn

Compared to scattered searches online, I recommend directly reading systematic patient education manuals or popular science books. The Sunflower Children mini-program has about ten popular science handbooks available for free download.

I first recommend that all parents of sick children read the "Sunflower Children Family Handbook," which has been produced by the Children's Oncology Group (COG) in the USA and authorized for translation by Sunflower Children. It is the best basic science material on childhood cancer I have seen so far. Reading this book will lay a solid foundation for further learning.

In addition to online manuals, there are published popular science books. The "Hundred Questions and Answers about Childhood Leukemia" and "Hundred Questions and Answers about Childhood Tumors" by Sunflower Children are specifically focused on childhood leukemia and solid tumors and I highly recommend parents take a look.

Additionally, you can check out the Chinese version of the "Together" website created by St. Jude Hospital:

https://together.stjude.org/zh-cn/

St. Jude is one of the best research-oriented children’s hospitals in the world and one of the largest public service organizations. They have created this educational website for patient families, which contains a lot of excellent content.

For parents who can read English, I also recommend some resources:

The National Cancer Institute (NCI) has a set of English popular science resources, such as the Childhood Cancer Parent Handbook.

https://www.cancer.gov/publications/patient-education/children-with-cancer.pdf

In addition, there is a complete set of pediatric oncology popular science content that is excellent in both content and format. You can see how thoughtful the illustrations are in the following CAR-T explanation, and there are many such illustrations.

Neuroblastoma Handbook:

https://www.cancer.gov/types/neuroblastoma/patient/neuroblastoma-treatment-pdq

Child Brain Tumor Handbook:

https://www.cancer.gov/types/brain/patient/child-brain-treatment-pdq

Child Acute Lymphoblastic Leukemia Handbook:

https://www.cancer.gov/types/leukemia/patient/child-all-treatment-pdq

Child Acute Myeloid Leukemia Handbook:

https://www.cancer.gov/types/leukemia/patient/child-aml-treatment-pdq

In addition to the NCI, the National Comprehensive Cancer Network (NCCN) also has guidelines for pediatric acute lymphoblastic leukemia:

nccn.org/patients/guidelines/content/PDF/ped_all_patient.pdf

The content is also very practical. For example, what subtypes are there for acute lymphoblastic leukemia? A table clearly explains it.

Additionally, after treatment (chemotherapy, transplantation, etc.), when should follow-ups occur? What should be checked? These are also clearly outlined in a table.

In some instances, to help everyone understand, there are very intuitive illustrations. For example, when discussing bone marrow aspiration, the child's position and the puncture site are clearly illustrated.

CureSearch is a public foundation dedicated to supporting pediatric oncology research, and their website also has plenty of educational content, particularly popular science videos explaining cutting-edge treatments.

After this stage, everyone should have a relatively comprehensive understanding of their child's tumor characteristics, able to answer: What is the survival rate for this type of tumor? What subtypes are there? Is genetic testing necessary? What treatment methods are needed? Are there targeted therapies or immunotherapies available? And so on.

Stage Three: Advanced Level

Learn clinical treatment guidelines for childhood cancer

The goal of this stage is to understand: How should my child’s cancer be treated?

From this point onward, the content becomes quite rigorous, as you will be reading materials that are the same as those reviewed by professional doctors. This step is not mandatory, but if you are willing to dive deep, it is the most practical and worth spending a lot of time on. After this step, you will truly understand why the doctor has chosen this treatment plan for your child.

There are many versions of clinical guidelines for pediatric tumors. In China, there are guidelines from the Chinese Society of Clinical Oncology (CSCO), the Chinese Alliance for Cancer Comprehensive Treatment (CACA), and the National Children’s Medical Center, among others. For example, the "CSCO Guidelines for Diagnosis and Treatment of Childhood and Adolescent Leukemia," "CACA Guidelines for Integrated Diagnosis and Treatment of Childhood Cancer," and "National Health Commission Guidelines for the Diagnosis and Treatment of Pediatric Malignant Tumors." However, parents do not need to read each one, as these guidelines are generally similar for specific tumor types.

The guidelines cover almost all clinical issues that may be encountered with this type of cancer. After reading them, you will understand just how complex cancer treatment can be and will have increased respect and awe for doctors’ work.

Because the content is extensive, everyone will likely feel overwhelmed when they first start reading the guidelines.

But do not worry; over 90% of the content may not be relevant to you. You just need to focus on finding the parts related to your child's specific type and stage (for instance, if it’s low-risk acute lymphoblastic leukemia, you do not need to read about the guidelines for acute myeloid leukemia).

If you can read English or want to understand the latest international protocols, you can also read the NCCN guidelines. They are comprehensive and updated rapidly. Here are some examples:

Childhood Acute Lymphoblastic Leukemia Guidelines:

https://www.nccnchina.org.cn/guide/detail/413

Acute Myeloid Leukemia Guidelines:

https://www.nccnchina.org.cn/guide/detail/415

Childhood Hodgkin Lymphoma Guidelines:

https://www.nccnchina.org.cn/guide/detail/344

Child Central Nervous System Tumor (Brain Tumor) Guidelines:

https://www.nccnchina.org.cn/guide/detail/249

Wilms Tumor Guidelines:

https://www.nccnchina.org.cn/guide/detail/350

Child Aggressive Mature B-Cell Lymphoma Guidelines:

https://www.nccnchina.org.cn/guide/detail/363

Soft Tissue Sarcoma Guidelines:

https://www.nccnchina.org.cn/guide/detail/371

Bone Cancer Guidelines:

https://www.nccnchina.org.cn/guide/detail/364

Histiocytosis Guidelines:

https://www.nccnchina.org.cn/guide/detail/145

You can compare the Chinese and American guidelines to gain a more comprehensive understanding of treatment options. Some approaches may differ between China and abroad, and certain medications or treatment methods available abroad may not be found in China, or vice versa, where some unique treatments available in China may not be offered abroad.

Do not worry about not understanding English; many translation software tools are now very powerful.

Here’s a little surprise: the NCCN guidelines for childhood acute lymphoblastic leukemia even have a Chinese version!

It was just updated in March of this year. The guidelines are a total of 131 pages, with very detailed content. Just take a look at the table of contents below.

Many of the questions that you care about are included here, such as how to treat B-cell acute lymphoblastic leukemia in infants? A single image clarifies it.

How about treating T-cell acute lymphoblastic leukemia? Similarly, a single image explains that too.

In fact, the key work of doctors in outpatient settings is to find the most suitable branch choice on such “decision trees” based on everyone’s specific situation.

If you can understand these things in advance, communicating with doctors will naturally become much more efficient.

For instance, how is low-risk, medium-risk, and high-risk childhood acute lymphoblastic leukemia determined?

This table not only visually lists the criteria for determining risk levels but also shows that multiple criteria systems can coexist. This point is also true for the Chinese guidelines, where different guidelines may have slight differences.

This is also something everyone needs to understand:

In professional fields, many things are subject to debate, and in any country, not all expert opinions can align.

This is why sometimes different experts provide different treatment plans. While we all hope for a unified standard, medicine is complex, and sometimes it is challenging to convince one another; multiple approaches can coexist.

However, there is no need to be overly anxious, as this usually means that there is no significantly obvious advantage or disadvantage among the various plans; otherwise, ineffective ones would have been eliminated long ago.

In addition to the NCCN, the National Cancer Institute (NCI) also has professional English materials, such as the following:

Neuroblastoma Professional Version:

https://www.cancer.gov/types/neuroblastoma/hp/neuroblastoma-treatment-pdq

Child Brain Tumor Professional Version:

https://www.cancer.gov/types/brain/hp/child-brain-treatment-pdq

Child Acute Lymphoblastic Leukemia Professional Version:

https://www.cancer.gov/types/leukemia/hp/child-all-treatment-pdq

Child Acute Myeloid Leukemia Professional Version:

https://www.cancer.gov/types/leukemia/hp/child-aml-treatment-pdq

The NCI's set of materials covers the widest range of cancer types. If the ones listed earlier are not available, you can directly search their list for the cancer type you are concerned about: https://www.cancer.gov/types

Going through this material is not easy, but if you dedicate enough time to learning, by this stage, your understanding of the disease should be quite advanced. You should be able to clearly answer: What treatment options do I have? What are the pros and cons of each? If resistance occurs later, what are my options? And so on. Conversations with doctors will become much easier from here on out.

Stage Four: Master Level

Learn about the latest research papers

Learning is a never-ending journey. Although most of the time the guidelines are sufficient, for particularly complex situations or treatments still in clinical research, doctors can only rely on their experience or research papers.

To read papers, first, know how to access the biomedical paper database, Pubmed:

https://pubmed.ncbi.nlm.nih.gov/

This is the world’s largest biomedical paper database, where you should be able to find the latest important advancements. However, the volume of content is vast; unless you have thoroughly understood the previous three stages and know how to search for the information you need, it is easy to get lost in the sea of information.

At this stage, everyone’s needs are very individual, and it’s similar to doing research, so I won’t elaborate too much on popular science here.

Final Thoughts

In the current medical environment and system in China, the time doctors have to communicate with patients is very limited, which brings many challenges for both sides. Therefore, improving communication efficiency is particularly important. Parents are the most important responsible persons for their children, and even if the doctors are excellent, it is essential to make an effort to learn.

Parents should not worry about not having enough background. From my experience, it is never too late to learn; the key is to take action and persist. The vast majority of people can successfully complete the second stage of learning. At this point, your understanding of your child's illness will progress rapidly, making it possible to make better decisions.

I wish for the children to recover soon with the efforts of their parents.

Respect for life!

Do you have any good learning experiences or materials to share? Feel free to leave a comment!

Author: Li Zhizhong

Typesetting: Xia Yu