Advice for Parents of Children with Brainstem Tumors

Let me begin by saying how sorry I am that your child has been diagnosed with a brain tumor. I hope that this article, along with the others we have written, are of some help as you care for your beloved son or daughter.

Confirming the Diagnosis

It requires a great deal of experience to interpret MRI scans correctly. It is entirely possible that the radiologist who read your child’s scans has misidentified the tumor. The proper diagnosis is essential to determining the correct treatment alternatives.

I strongly suggest that you send the scans to a place such as the Brain Tumor Center at Duke. Contact them and describe what you need. They will advise you on what to do. We sent our scans to Dr. Henry Friedman and he had them evaluated by several of his specialists.

Selecting a Medical Center

Before you worry about specific treatment options, you must have confidence in the medical center. It was essential that our daughter have access to the best treatment options and the most experienced doctors available. For Faith’s tumor, where no cure is known, the best hope often exists at the leading edge of medical science. The following quote explains all of the reasons that we traveled to the Brain Tumor Center at Duke for Faith’s treatment.

"Since brainstem gliomas are relatively uncommon and require complex management, children with such tumors deserve evaluation in a comprehensive cancer center... In particular, for diffuse brainstem gliomas, because of their rarity and poor prognosis, children and their families should be encouraged to participate in clinical trials attempting to improve survival with innovative therapy."
Excerpted from: Brainstem Gliomas in Childhood by Dana R. Foer, PA-C, Paul Graham Fisher, MD, MHS

The quote above refers to a "comprehensive care center". Here are the types of resources that such a center should provide:

Even if you don’t go to Duke, they can advise you on other medical centers. Also, if you learn the name of doctors or hospitals that are tops in this field, call them. You will be surprised how willing they are to help. You should also contact patient-oriented organizations that will provide you another perspective:

Selecting a Treatment

If your child has just been diagnosed, chances are that you understand little or nothing about brain tumors and treatment alternatives. It can be extremely confusing to read about treatment protocols posted by individual medical centers or comprehensive listings of trials such as Clinical Trials and Noteworthy Treatments for Brain Tumors. It can be even more confusing to read about treatment options as described by parents on mail groups (described below). I suggest that you pick your medical center first and rely on them to recommend the most hopeful treatment options.

When it comes time to select a treatment, here are points to consider:

Dr. Stanislaw Burzynski

At some point you may run across a reference to a Dr. Stanislaw Burzynski who offers a highly controversial treatment for these types of tumors. Please read the following two articles about this doctor and his Antineoplaston Therapy:

(PDF Version)
(PDF Version)

Coping Strategies

Health Care Issues

No one expects you to have the knowledge or experience of a doctor or a nurse. That is why we turn to medical professionals. But you will play an active role in caring for your child:

Thus there are a number of important, health care issues of which you should be aware.

Here are some of the things that you should be concerned with:

Helpful Items

During the initial months, your child may have difficulty walking. Even after radiation and chemotherapy, this problem may continue. The use of decadron (steroids) can also cause weakness. Early on, we purchased a special needs stroller from a medical supplier. This was extremely helpful throughout Faith’s illness. It allowed us to take Faith out (e.g., to the store, to the park, to the zoo) without requiring her to cover long distances on foot. When Faith became wheelchair bound, we used this stroller as a way to carry her in and out of the house (in lieu of building a wheelchair ramp) and upstairs/ downstairs (in lieu of renting a stairlift). A sample of such strollers can be found at Adaptive Mall.

If your child is not able to swallow pills, then you will want to buy a small mortar and pestle to grind up medications. The mortars sold at culinary stores are too large and the interior of the bowl is too coarse. Instead, for less than $20 you can get a 3 1/8" or 3 1/2" porcelain mortar from companies such as Fisher Scientific that will work much better.

During end stage, we worked with our insurance company and our oncology nurses to determine what we needed at home to take care of Faith as her condition deteriorated. These items included:

If your child develops a special need, contact your nurses and ask for their advice in helping to address this need.

It is unpleasant to think that your child will ever need these things. I now want to discuss one of the saddest things that can happen to your child. At some point, the tumor will cause your child’s speech to become increasingly slurred. Then, one day, the tumor will rob her of the ability to speak altogether. And yet she will be completely lucid. She will be able to interact with you and she will have needs that need to be met. What do you do?


Whenever there was bad news to relay to Faith’s classmates, we relied on her school to handle this matter. We left it up to the experts (the principal, the school psychologist and the teachers) to determine what needed to be said and how it was to be delivered. Although we never needed it, the Child Life Staff from the hospital was available to come to the children and explain (in appropriate terms) the nature of Faith’s illness and the side effects of her treatments.

DNR Documentation

At some point, your doctor will bring up the issue of Do Not Resuscitate (DNR) orders. The DNR is to be used in the event of a serious turn of events where the effort to save your child’s life would (a) be ineffective or (b) cause undue pain and suffering relative to the unlikely benefits of such efforts. Once you have agreed on the specifics of the DNR, make sure that your decisions are properly documented. I mention this because it took a while for Faith’s nurses to get all of this straight.

There may be two different types of DNR documentation that you require:

Make sure that you keep all of this paperwork together and readily accessible in your house.