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
Selecting a Medical Center
Selecting a Treatment
Dr. Stanislaw Burzynski
Health Care Issues
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:
Pediatric Brain Tumor Consortium.
- Oncologists, radiologists and nurse-practitioners with clinical experience dealing with your child’s specific type of tumor
- Social workers
- Child-life specialists
- Affiliation with the
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:
Children's Brain Tumor Foundation
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:
- Avoid any options described as "aggressive". Select treatments that are as humane as possible.
- Do seek out medical trials. Be aware of the difference between Phase I and Phase II trials. Given the choice, you would prefer to be on a Phase II trial.
- Do not minimize the importance of radiation therapy as part of the overall treatment.
- Be aware that if a better treatment option becomes available later, you may have the option to switch (depending on how the protocol for the other treatment is written).
- If the treatment option that you select is shown to be ineffective, you should be able to try another one depending on your child’s condition. Faith went through three different chemotherapy treatments.
- Talk to your insurance case manager to be sure that they will cover the treatment option you are considering.
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:
Contact Lists — You should keep a detailed contact list as you go along. Keep track of names, titles, addresses, phone numbers and email addresses.
Disseminating Information — It can be difficult to keep everyone who is interested in your child’s condition up to date. Sometimes you simply don’t want to talk to all of these people. Sometimes you don’t want to share the news. Use email as a way to reach a large number of people quickly and painlessly. Establish designated points of contact among your friends and family; you tell them and they’ll spread the word to a particular community.
Vacation Hour Donations — You will want to be with your child as much as possible. Check with your company’s Human Resources Department to see if fellow employees can donate their vacation hours to you. There may be a policy for this even if it is not widely known within your organization.
Mail Group Support — You can join a mailing list of caregivers dealing with the same types of issues as you. Mailing lists allow people to easily find and communicate directly with others who share a common interest. You register your email address with the mailing list. Members send emails to a single group address; the emails are then distributed automatically to all individual members. Information on mailing lists is available on the Clinical Trials web site mentioned previously.
Parent-to-Parent Support — Your medical center probably has a parent support group. You may find this helpful. As diffuse pontine gliomas are so rare and have such a poor survival rate, we were less interested in hearing from parents dealing with other types of cancers (or even other types of brain tumors). As it turned out, there was another child at Duke with the same tumor as Faith. We formed a strong bond with that family and this was one of our best sources of strength. We found that it was easy to share good news and very difficult to share bad news. But it was important to keep the lines of communication open.
Spouse-to-Spouse Support — The two of you cannot do everything equally well. Marilyn and I found that we had complementary strengths that allowed us to take care of all of Faith’s needs. We needed each other to get through this ordeal.
Accepting Help — People want to help. You do not always have to take it. But instead of saying "No," tell them "Not yet". This is probably what you really mean. When you are ready, be willing to accept help from people that you trust. Again, you do not have to deal directly with everyone. For example, we were lucky to have someone volunteer to coordinate the schedule of people who wanted to prepare meals for us.
Capturing Memories — Take pictures. Lots of them. A few months after we returned from Duke, Faith looked wonderful. The side affects of the steroids had worn off and her eyes tracked normally again. But I suspected that this could not last forever. I arranged a photo session with one of the best portrait studios in Boston. You might want to have a family photo taken. Another thing that I wish we had done: record Faith’s voice. She had a wonderful laugh; her giggle would brighten your day. When she lost the ability to speak, there was no way to recapture this.
Preparing for the End — Doctors have a succinct term for the time when you no longer have hope for your child’s recovery: end stage. This is probably the time for you to confront your child’s mortality. Very likely, you have not thought about burial options for yourself. Now you have to make plans for your child. Talk to your minister or rabbi about your experiences. Think about how you want your child to be remembered. Select a funeral home. By doing this you are not giving up on your child. On the contrary, you continue to want the best for him.
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:
- You will serve as your child's advocate. When you think that something is wrong or has been overlooked, you will fight for your child.
- You know your child best. You are with him far more often than any doctor or nurse and your observations will be valuable to the medical staff.
- You will need to be a nurse to your child throughout this ordeal, especially as she becomes more debilitated.
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:
- Medications — Always dispense all medications prescribed by your doctor.
- Immune System — During treatment therapy, your child's immune system will be compromised. Your doctor may prescribe drugs such as Bactrim and Fluconazole to be taken on a regular basis to prevent various types of infections. Do not underestimate the importance of these medications. Also, if your child is still attending school, you must be aware of health threats (everything from colds to chicken pox) from her classmates. Work with the school nurse on the issue of sensitizing other parents to the needs of your child.
- Bowel Maintenance — Your child will probably need to be put on a bowel maintenance regimen (e.g., Milk of Magnesia, Colace or Miralax). Even the gentlest chemos can cause constipation. When your child goes off chemotherapy, ensuring regular bowel movements will continue to be important. Patients who are inactive or who suffer stroke-like events are more prone to constipation. Constipation can lead to breathing difficulties, vomiting and other serious problems. When your child is in a compromised medical condition, these problems can be life threatening. Our daughter was hospitalized twice due to complications arising from severe constipation.
- Hydration — If your child gets to the point where he is unable to swallow easily, getting adequate hydration may become an issue. It may become necessary to give IV hydration at home.
- Ear Wax — After radiation therapy, your child may experience ongoing problems with buildups of ear wax. If your clinic nurses remark on this problem, insist that your child be seen by an Ear/Nose/Throat doctor. ENT's have special tools for removing ear wax that clinic nurses don't.
- Skin Sores — As soon as your child becomes more sedentary, you must work to prevent the problem of skin sores. Open skin sores can be painful and a source of infection. If your child is sitting all the time, you must get a gel cushion. If your child is restricted to a bed, get an air pad. Work with your nurses on this issue.
- Blood Pressure — Blood pressure can be affected by high levels of steroids (i.e., decadron) as well as by the tumor itself. I would recommend that you monitor your child's blood pressure on your own at home. Our daughter experienced a debilitating stroke-like episode as the result of tumor progression. While the nurses checked her blood pressure during her weekly clinic visit, it might have been helpful if we had been checking it on a daily basis at home. Record your readings and keep this information around. Talk to your nurses about the appropriate blood pressure monitor and where to acquire it.
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:
- A pediatric wheelchair
- A gel cushion for the wheelchair (very important!)
- A suction machine (learn to use it!)
- Oxygen tanks
- A hospital bed
- An alternating pressure pad for the bed (also very important!)
- An apnea monitor. The apnea monitor alarms when the heart rate goes over or under a certain threshold or when breathing stops for a certain number of seconds.
- A finger pulse oximeter. An oximeter can be used provide spot checks on SpO2 and pulse rate measurements. Companies like Respironics have small units that your medical equipment supplier can provide (with a prescription from your child's doctor). If your doctor tells you that the apnea monitor is enough, be persistent. The apnea monitor does not provide any readings and alarms only when thresholds are exceeded. It is extremely useful to have this little device to perform periodic checks.
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?
Alpha Smart is a small portable keyboard with a 4 line LCD display. It is used by schools to teach typing skills to youngsters. It can also be used in lieu of a fully featured computer to compose short documents. We borrowed one of these units from Faith’s school to allow her to communicate things that we did not yet have in her Communication Book.
- Communication Book — As Faith’s speech became slurred, her first grade teacher helped us to create a communication book. We wrote down words and phrases (accompanied by colorful pictures) that Faith needed routinely to communicate with us. (Faith was just learning to read so both words and pictures were useful.) Faith could then point to the words when she needed something. Over time, we would add words to the book. The book was comprised of sheets of typing paper inserted into a binder of page protectors (which guarded against spills and tears). There are three final points to make. First, the book was developed while Faith could still speak. Second, Faith participated in the development of the book; her teacher made a game of selecting words and drawing the pictures. Third, the book is colorful and "fun" (to the extent that losing the ability to speak is ever fun).
- Thumbs Up/Thumbs Down — Yes/No questions could be answered quickly with a thumbs up/thumbs down response. Later when Faith lost the ability to use her hands, she could blink/not blink her eyelids.
- AlphaSmart — An
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.
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:
- Pre-Hospital — Pay a visit to your local firehouse or ambulance service and ask them what documentation your locality requires for a DNR. In Massachusetts, a doctor or nurse practitioner must fill out a special "Care and Comfort" form . This is the only form that EMT’s will recognize as a valid DNR.
- In-Hospital — Your doctor will provide you with DNR documentation specific to your hospital. At New England Medical Center, two forms are required: a DNR Documentation (a general form describing the patient’s diagnosis and the reasons for the DNR) and a Physician’s Orders (which describes the medical interventions which are allowed and disallowed). The Physician’s Orders must actually be rewritten on each new in-patient stay at the hospital.
Make sure that you keep all of this paperwork together and readily accessible in your house.