Cristian Rivera Foundation

Important Resources

Important Resources

Nutrition

Patients with DIPG can have many issues relating to their nutrition. However, maintaining good nutrition is important for everyone’s overall health, a fact which is doubly true for cancer patients. According to DIPG.org, dealing with DIPG can change the landscape of maintaining good nutrition because your child may be too nauseated to eat, too fatigued, and a host of other issues. As a caretaker, this can present a tough problem.

As DIPG progresses, a patient’s tastes may change, which is something that caretakers should be aware of. Additionally, their worldly responsibilities (i.e. doctor’s appointments, chemotherapy, etc.), may make their schedule full, leading to a diminished appetite as the patient forgets to eat amid life’s chaos (NIH).

One of the side effects that DIPG patients face is the weight gain that can come from steroid medication (DIPG.org). It may throw their nutritional balance off-kilter. However, maintaining good nutrition is important, especially for younger patients. Therefore, as a caretaker, you may want to use a reward system or a way to perpetually delay the consumption of high-calorie foods to avoid this problem of weight gain.

On the other hand, weight loss is also a big issue. Chemotherapy and radiation treatment, in addition to being weaned off steroid medication, can cause serious weight loss, which needs to be managed just as effectively as weight gain is. Vitamin supplements and higher-calorie foods are better for patients in this situation.

Many patients with DIPG, especially younger ones, can also face problems with swallowing. This can be alleviated by ensuring that the patient eats foods in much smaller chunks, by serving softer foods, or even by encouraging them to eat slower and take their time. If the patient has difficulty swallowing thin liquids, try to thicken up the liquid or use an injection to deliver it.

There may also come a time when the patient may not be able to use their mouth to eat at all. In that case, it is best to refer to your physician to see what you can do (Asbestos.com). Some options include nasogastric tubes or gastrostomy tubes. These tubes are mainly used when the problem is mechanical. It is important to listen to your designated medical professional(s), who will be better equipped to explain the complexities of the situation.

Mobility

Some patients with DIPG may have issues with moving around and getting where they need to. According to the Weill Cornell Brain and Spine Center, this is likely due to ataxia, which are balance issues that often accompany a DIPG diagnosis, difficulty controlling eye movements resulting in lack of proper perception, or even muscle weakness as a result of various external factors. In terms of solving this issue, there are various routes that caretakers can choose, depending on the individual patient’s needs and responsibilities.

One of the best ways to restore mobility to a patient is to get them to physical therapists. This is a very reliable method because physical therapists can use genuine medical intervention and help the patient recover functioning in their limbs (Cancer Treatment Centers of America). It is the safest way to ensure that the patient retains or even regains their mobility to the point it was at before cancer affected their bodily functions.

Another method, which would fit well with younger patients, is to get a stroller. Since the majority of DIPG cases affect younger children who may not necessarily have the patience to undergo physical therapy, getting a stroller can help the caretaker move the patient around. The “adult” alternative is to get a wheelchair and push themselves or have someone else push them.

Because rehabilitation works to improve the patient’s muscular strength, it is a good way to keep the patient healthy while also attempting to regain their mobility. But mobility is not solely determined based on the patient’s ability to move freely (OncologyNurseAdvisor). Instead, it involves the patient’s ability to go from one place to another, to sit and stand, and many more daily life activities that require some form of movement or lack thereof. DIPG can affect mobility in many ways, so caretakers must be aware of concerns surrounding the issue.

A helpful thing to have when taking care of a patient with DIPG is a handicapped parking permit. It would drastically reduce the walking times for patients and caretakers and allow them ease of function when interacting with society. A caretaker can obtain an application for handicap parking from the state’s Department of Motor Vehicle Administration. The feasibility of movement is something a caretaker must be aware of as they are traveling, whether it is to the local park or another country.

Sleep

Sleep is a fundamental part of human living. It is a period of relaxation where the body undergoes a series of vital changes that enable healthy functioning. For a DIPG patient, sleep is even more vital. However, many caretakers often face issues with getting their patients to sleep for the time they need to. Oftentimes, patients cannot fall asleep due to nausea, pain, or any variety of issues. Because sleep is so vital to the human body, however, caretakers must ensure their charges get enough sleep.

A major strategy for getting patients to fall asleep for the correct amount of time per night is to ensure that they have a nightly routine. Using the psychological theory of operant conditioning, which employs risk and reward to encourage or discourage certain behaviors, a caretaker can encourage a patient to fall asleep at a certain time. Eventually, they will be so used to falling asleep at that time that their circadian rhythm, which is the body’s natural sleep rhythm, will set according to that time, making the patient not want to deviate from their routine.

For children, things are a little more complex. To help them wind down after a long day, caretakers should try to “quieten” the activities of the night. This means that the patient would not be actively playing or doing something that requires a lot of attention or energy at night. Instead, they might read a book or have a story told to them. This helps the child to relax slowly and fall asleep.

Caretakers can also avoid playing loud music or having louder sounds in the house. They may want to avoid using brighter nightlights, although these can be used should the patient prefer them. Medications are also important to know as some may cause insomnia and should not be given to the patient before nighttime. Furthermore, caretakers can avoid giving the patient excessively caffeinated or sugary food or drink. These tips may help caretakers ensure that their charges fall asleep and remain healthy.

While there are medications that can help patients to fall asleep, a patient and their caretaker(s) should take the advice of their medical professionals before taking the medication. Oftentimes, medications can have adverse reactions to other medications, so it is important to be aware and not mix and match different drugs.

DIPG and Psychology

Fighting cancer is a very commendable thing. It is worthy of praise and respect, not only for the patient but also for their families and supporters. Like every other disease, however, even a victory can leave you with scars. Cancer can often leave your body and your mind with many scars that can take a long while to heal if they heal completely. Furthermore, even while an individual is going through cancer, they may face many psychological symptoms related to their illness.

Psychology has a very important role in clinical treatment. An individual’s mental state can determine whether their treatment is useful in the long term or not. According to the National Cancer Institute (NCI), people with cancer can face serious emotional and psychological trauma from dealing with their diagnosis. This could lead to potential harmful behavior or self-destructive patterns, as a way to cope with the reality of cancer (NCI). Furthermore, increased levels of stress have shown increased tumor growth and metastasis compared to lower levels of stress, in a study done by the NCI. Therefore, an individual’s psychology can have a very real impact on their biological diagnosis.

It is important to treat an individual facing cancer with care, respect, and compassion. This behavior should also be extended to the patient’s loved ones, friends, family, and anyone else who may have been affected by their diagnosis. According to an article by the University of New Hampshire, surrounding yourself with happier people can lead to a better quality of life and a sense of wellbeing.

While positivity is not necessarily a cure for cancer, it is a preventative measure taken to alleviate symptoms of negativity. According to an article by Healthline, psychosocial risk factors can further the development of mental health issues in patients. This has the potential to negatively interfere with the patient’s treatment. In essence, there is a clear link between psychosocial issues and cancer outcomes, although the mechanism by which this is completed is still unclear.

Overall, it is easy to see that taking care of the mental aspect of a cancer diagnosis can be just as important as paying attention to the physical aspect. It is important to realize that cancer can potentially reduce the amount of time that an individual has left. Therefore, their lives should be spent truly living to the best of their ability. Mental wellbeing can take a toll on the caretakers of the patient, as well, and they may not be able to perform their jobs as effectively as possible. Therefore, psychology can deeply interact with a diagnosis of DIPG and is something that should be just as keenly studied and addressed as physical issues.

Treatment Support

One of the most integral parts of addressing DIPG is medical treatment. Patients often undergo various chemical interventions, as prescribed by their doctors, radiation therapy, and many other forms of treatment, both proven and experimental. These treatments can often take a lot of time away from the patient’s day and leave them exhausted. However, they are vital to maintaining the patient’s health and working towards a cure for DIPG.

During the process of treatment, there are many things that a caretaker can do to help alleviate some of the concerns that a patient might have. The first thing to do is to have the name, responsibilities, and contact information of every member of the patient’s healthcare team. According to DIPG.org, this is one of the most important parts of preparing for any unexpected situations, such as an adverse reaction to treatment or any other emergency.

Furthermore, patients may feel bored or isolated from their peers, family, and friends, due to the lengthy and confining nature of their treatment. The American Childhood Cancer Organization has a variety of resources for both children and parents to deal with cancer, such as DIPG. They offer books, arts and craft kits, journals, play kits, and much more. They also provide families with a journal, entitled Along the Way, which helps families keep track of their medical provider’s information.

In terms of medications, cancer patients, in general, have to take a lot of medications. It is important to deliver the medications at the right time and in the right dosage to avoid any unnecessary complications. An effective way to organize these medications is through a pillbox. Caretakers/patients should also record the date and time that each medication was taken/given. If there are any difficulties or questions about the medication or anything related to treatment, do not hesitate to ask your nurse or doctor. They are there to help you, after all.

The patient may also complain of nausea, pain, or other symptoms. According to DIPG.org, the patient may experience different types of pain throughout their treatment. It is crucial to know when your child is in pain as well as what type of pain it is. A helpful tip is to teach your child to describe the pain with a 1 to 10 system. Within this system, make sure that your child knows exactly what severity of pain corresponds to what number. This way, emergencies can be caught easily.

Overall, the goal of a caretaker is to ensure that the patient feels as comfortable and as good as possible throughout treatment. The most effective way to do so is through emotional and physical reassurance. Going through cancer treatment is something that can be extremely difficult and it is important to reassure the patient that you are there for them. This article can give you some tips on the practical side of caring for a patient with DIPG, but it does not mention every possible situation that could occur. Therefore, it is good practice to use discerning personal judgment and acquiesce to the patient’s needs above all else. Cancer is a terrifying beast, but with the right support system, it can become much less frightening.