DIPG Childhood Brain Cancer

Larissa Bufka, Germany

Do you ever feel you can’t control what is about to happen in the future? That’s how many parents feel if their child is diagnosed with Diffuse Instrinsic Pontine Glioma ( DIPG).

Most of the people in the world have never heard of this type of cancer, so what is DIPG?

DIPG is a highly aggressive and difficult to treat brain cancer. Most likely children between the age 1- 14 are diagnosed. The cancer is located in the base of the brain, more specifically the brain-stem (Pons). The pons is located in the middle of the brain and is one of the most important parts. It is responsible for breathing, sleeping, blood pressure and many more.

a graphic diagram of the human brain showing the names of different areas

What causes it?

Many other cancers are influenced and caused  by the environment such as smoking, drinking, drug abuse, radiation and inherited genes from their parents, but there is no link or connection to either one of them to DIPG. There is nothing that parents could have changed. New studies have shown that the brain cancer is connected to the brain development, which suggested that the disease process may be influenced by particular cells that are present in the highest concentrations while the brain is growing and developing. That could also explain why only children get DIPG and not adults. There is not a lot of research yet, so nobody knows what exactly causes the brain tumor.

What are the symptoms?

The tumor is growing really fast, so the symptoms are appearing all of a sudden and get worse really quickly. The tumor is growing in the brainstem and is growing really fast. Because of the location in the middle of the brain, children usually have problems at the beginning with the face muscle and also with the eye movement. Later, one side of the face drops. Children also experience bad headache and vomiting. They have problems chewing, swallowing, and get hearing problems, many children also become deaf.  After a time, the tumor causes limb weakness, difficulty standing or walking, abnormal gaits and unbalanced limb movements.

Image result for dipg

Is there a treatment or even a cure?

Surgery 

Doctors can not remove the brain tumor with surgery and there are two reasons. Reason number one is because the pons is located in the middle of the brain. A surgeon could not get to the tumor without damaging the surrounding brain. Damaging the neighboring area could be even more fatal, and would cause neurological damage. The second reason is that, even if the doctor is able to surgically remove the tumor, it would return soon. The reason for that is that the tumor is not a solid tumor, which is a big or small mass of cancer cells which can be removed easily. A DIPG tumor spreads between the healthy brain mass, so it is impossible to remove all of the cancer cells and not damage the healthy part of the brain. The tumor would return immediately.

Radiation

Radiation helps many DIPG patients. It lets the tumor shrink a little and makes the patients feel more comfortable. Many symptoms are not as bad as they could be. But radiation is not strong enough, so the tumor is grows back within month.

Chemotherapy

In the past years many DIPG patients have  tried different kinds of chemotherapy, sometimes alone or sometimes with other drugs, but not one of them has shown any benefit for survival.

Are there any survivors and what is the long-therm outlook?

The advanced medicine has done nothing for the children with DIPG. There has been no change since 1960. A child diagnosed with DIPG gets the same treatment/prognosis as he would have 60 years ago. There is no chance of survival. Some other cancers had a survival chance of 10 % in 1960, but nowadays they have a survival rate of 90% (Wilms tumor) so the survival rate improved by 80 %, which is amazing. Children who get diagnosed with DIPG die usually nine month after the prognosis. In some cases, they survived two years, but it depends how advanced the tumor is. Just 5% survive for five years. No one who has been diagnosed with DIPG has ever survived. The long-therm outlook is to make them feel as comfortable as possible. This type of cancer should get more attention and there should be more test and research to help many families and children in the future.

I choose this subject to bring more awareness about this specific brain cancer and that everyone should be happy to be healthy and alive:)

 

 

 

A Letter to My Future Self

Dear Future Self,

You are probably reading this, maybe ten years later from the day you’ve written it to yourself. You might remember the day you were sitting in class at the EF school in Santa Barbara, and got the assignment to write about something you’d like. Then you came up with the idea to write about the most exciting experience of your life so far, to give yourself something to look back on when you’re older.

When you were only fourteen years old, you first visited the United States. After growing up in such a small country as the Netherlands, coming to the States was a huge eye- opener; it was the real experience of seeing everything big, bigger and biggest. You loved it, and from the first visit on you already knew you’d be coming back to this country one day. That whole plan started to come together during your last year of high school. You really din’t know what to study after your graduation, so you decided to take a year off from school. First a few weeks of hard work to make some money, then off to the USA for three months to take an English language course with EF.

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That’s where we are now. Let’s help you out a little: the day you wrote this letter, was your 12th day in Santa Barbara. The arrival wasn’t completely as expected; you had some struggles with your visa at the border and the welcome in your host family was not what you’d hoped for. Anyways, the first week of school was full of fun activities and you already met lots of new people, so there wasn’t any moment left to actually think about home. The second week you slowly started to settle in; the jetlag was over and you started to get familiar with the everyday school routine. You couldn’t believe that almost two weeks had already passed, and that you’d be flying to Miami Beach in five weeks to stay there for another seven weeks.

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And after that? I can’t tell you yet. I decided to take every day as it comes, and to not worry too much about ‘what will happen next.’ I can only tell you about my hopes. I hope my time in the States will be so memorable, that when you are reading this in the future, you will still look back on this time as the best time of your life. I also hope, that this year off from school helped you to figure out what you wanted to study at university in the next school year, and I hope that this trip helped you to become the person you are today. In this moment, I have already met a lot of people, but I believe there are way more people to get to know, and more beautiful places to be explored. I truly hope that all these new connections will slowly turn into true friendships that will last for a lifetime. How amazing would it be, if you can say that you’re still seeing people you’ve met during your time in the USA? I can only hope for the best.

Lot Steenvoorden, The Netherlands