Friesland college vavo pws the war against childhood cancer lucinde akkerman havo

The development in finding a cure for childhood cancer by Lucinde Akkerman

“The war against childhood cancer” LUCINDE AKKERMAN

Lucinde Akkerman, VAVO 2016-2017 6 november 2016 Profielwerkstuk Engels en MAW

1

The development in finding a cure for childhood cancer by Lucinde Akkerman

Table of contents • • • • • • • • • • •

Table of contents Foreword Introduction Chapter 1: The differences between childhood and adult cancer Chapter 2: What does the future of a childhood cancer survivor look like?

Chapter 3: How much does our government spend on pediatric cancer research?

Chapter 4: What will the survival rate for childhood cancer be in 25 years’ time?

Chapter 5: How does our society look at childhood cancer?

Conclusion Source of information Thank you word

2

The development in finding a cure for childhood cancer by Lucinde Akkerman

Foreword As the writer of this final school project I want to explain my reasons for choosing this subject.

When I started this school year I knew I had to write a profile paper and I started thinking about possible subjects. The first thing I thought of was cancer, especially childhood/pediatric cancer. I have always wanted to do more research on this type of cancer because it is something close to my heart. Two years ago, I was diagnosed with childhood cancer. Hodgkin’s lymphoma stage 2, to be exact. My whole life changed and ever since that day I knew that I wanted to make childhood cancer research one of my top priorities. During my own treatment I learned that there is a lack of awareness for childhood cancer. I also found out that the treatment I received was the same treatment they used 25 years ago. My oncologist explained to me that simply because there is not enough money for research they can’t improve the treatment and make the side effects, especially the long term side effects, less severe. For my final project I wanted to learn more about the funding of childhood cancer research, I wanted to improve my own knowledge of my disease and figure out what our society can do to help childhood cancer research. I want to do everything in my power to raise more awareness.

Because I did not see writing about childhood cancer as a challenge, I decided to write my paper in English. I did not only choose this because I wanted a challenge, I also want to study International Communication at the Hanze Hogeschool next year. This study is completely in English and by writing my paper in English I could prepare myself for the next level, which is; studying in English. After I made my decision I figured out that I found it harder than I thought, but nevertheless am I happy I chose to do it, because this way I learned even more and I could combine this project with two other subjects; English and Social science.

3

The development in finding a cure for childhood cancer by Lucinde Akkerman

An Introduction This final project is about the development in finding a cure for childhood cancer, also known as pediatric cancer. Before I started writing, I contacted a lot of institutes who could help me with providing more information about childhood cancer research and the funding, because childhood cancer was all over me for a little over two years, I instantly knew who to approach for my questions. I wanted to focus especially on the research of new pediatric cancer treatments and the long term effects of treatment. At the end of this project I hope I will be more acquainted with research itself and what the survival rate for pediatric cancer will be in 25 years.

I have the intention to give you as much information as possible in five chapters.

These underneath topics will give you a close view of what I want to achieve with this project: finding out about the development of childhood cancer research in the next 25 years.

1.

2.

3.

4.

5.

What are the differences between childhood and adult cancer?

What does the future of a childhood cancer survivor look like?

How much does our government spend on pediatric cancer research?

What will the survival rate for childhood cancer be in 25 years?

How does our society look at childhood cancer (research)?

I talked to many people who work in the pediatric cancer research industry. I visited the Princess Måxima Center in Utrecht and spoke to Laurens van der Flier, phD, who is Managing Director Research and he has helped me a lot with my project and was able to hand me most of the information I needed for my paper. I also got the help of KiKa and SKION. Without them, this project wouldn’t have been possible, because the information I was given is simply not available on the Internet.

This project should be a wakeup call.

4

The development in finding a cure for childhood cancer by Lucinde Akkerman

What are the differences between childhood and adult cancer?

There are significant differences between childhood cancers and adult cancers, the main reason for that is the difference in development of cells.

Cancer begins to grow when cells in our bodies go out of control. Our body is made of cells and they are everywhere. Cancer grows in one single cell and can spread in a very short amount of time throughout several places in the human body.

Because it spreads so fast, doctors have to act soon and make sure the cancer does not grow any further.

This process is different for every type of cancer. *Source: https://www.hscmd.org/statistics/ We all know that there are many different types of cancer, such a leukemia, brain tumors, lymphoma cancer etc. Within all these different types, there are two more separations; Childhood or pediatric cancer and adult cancer. A lot of people are not aware of the significant difference. These two types of cancers are complete opposites.

Whereas adult cancer is most likely to develop from environmental risk factors or a lifestyle, childhood cancer is the result (most of the time) of wrong DNA (changes).

Sometimes new born babies are already diagnosed with cancer. Because of this, it is very unlikely to prevent a child from getting cancer.

Since the cells in a child’s body are still growing and he or she is still developing her body, the cancer spreads even faster than in a adult body. When a child has to start chemotherapy, radiotherapy or has to go through many surgeries, the body will get damaged. This happens because chemotherapy stops the development process. The damage will stay in the body forever. Almost every chemotherapy developed for use in adult cancer is completely unusable in children because of this damage.

Every adult who is diagnosed with cancer will get treated in their local hospital by primary care physicians and cancer specialists. As a child you are only allowed to get treated in a medical university center or a children’s cancer center. Sometimes a country has only one cancer center for children and families have to travel miles and miles to a hospital. Only physical oncologists who are specialized in childhood cancer are able to treat a child with cancer. Since childhood cancer is rare, there are 5

The development in finding a cure for childhood cancer by Lucinde Akkerman

not many specialized doctors and on top of that, there is not much information about childhood cancer since it is most of the time, DNA based. Childhood cancer being DNA based makes it very hard to find new cures for cancer. It makes them super uncommon and furthermore incredibly difficult to identify opportunities to prevent childhood cancer.

The types of cancer that children and adults suffer from are different, the most common types for children are the least common for adults, and vise versa. It cannot be said that the cure for children’s cancer is the same as for adult cancer.

Some forms of cancer only develop after a certain age. When this happens there is simply no other way than to start a whole new protocol to find a cure for this type of childhood cancer. Lowering an adult chemotherapy dose is not an option since it'll be very dangerous and not effective. For many childhood cancers they still use the same treatments has in the 1970s. In the past few years a lot of new dugs have been developed for the treatment of adult cancer, but only three new drugs have been found for pediatric cancer.

After a person (child or adult) is diagnosed with cancer, the treatment will start.

This could be chemotherapy, radiation, surgery, a transplant or a combination.

Since the children’s body is still developing, they are most likely to start chemo within a few days. This is very important because in 80% of the cases, the cancer in a children's body has already spread to more places. For adults on the other side, this is only the case for 20%.

The main difference between pediatric cancer and adult cancer, is the diagnosis.

Childhood cancer runs from 0 to 18 years and especially the little ones are very hard to diagnose with cancer, which is simply because children are much more active than adults and have more energy. Their boundless energy makes it harder for parents to realize that they're truly sick and need to go to the doctor. As a result, they will not indicate whether they have pain and it is hard to see a change in the body since children will not mention their pain. The diagnosis is extremely difficult in cases where children cannot explain how they feel and if they have pain or not.

For example, babies and toddlers are not able to verbally express that they are not feeling well. Because of this inconvenience, diagnosis may come too late or in a very late stadium. Pediatric cancer always requires immediate action.

In general, children have a better prognosis than adults. This is because their body responds, in most cases, better to chemotherapy or radiation than adults do.

Children can also undergo therapies better than adults. However, a child is still very young and the chemotherapy will do a lot of harm to the child’s body and since a child still has a long life a head they will need a lot help from social workers, psychologists, child life workers, rehabilitation, educators and physical therapists.

Children and young adults will need a lot of mental help to get their lives back on track and they have to learn how to live with all the life long side effects from their treatment. It is a super long process and it will take some years for a child to get back on track and to live a normal life. Cancer will always leave scars and be a big 6

The development in finding a cure for childhood cancer by Lucinde Akkerman

part of their life. Children who have had cancer will need special care for the rest of their lives.

Childhood cancer facts:1 #1 Cause of death for children 35% of the children diagnosed with childhood cancer will die within 30 years after their diagnosis 95% of the children will experience significant health related issues 71 potential life years lost when a child passes away from childhood cancer 1/5 will die within five years 1/3 will die young because of the cancer treatment they have received 80% will face life threatening diseases Average age of diagnosis is 6 years old There are 16 major types of cancer, but over 100 subtypes

1

Childhood Cancer

Adult Cancer

Not easy to diagnose

Easier to diagnose

Mainly leukemia, lymphoma’s, brain tumors

Mainly breast, prostate and ovary

DNA based

In most cases NOT DNA based

Immediate start of treatment

Very flexible treatment timeline

Rare

Common

Specialized University Medical Centers

Local hospital

Life long side effects

Sometimes life long side effects

Less awareness

More awareness

Tolerate chemotherapy better

Tolerate chemotherapy less

Almost no funding

A lot of funding

Average age = 6 years

Average age = 66 years

https://www.thetruth365.org/cancer-facts/ 7

The development in finding a cure for childhood cancer by Lucinde Akkerman

What does the future of a childhood cancer survivor look like? *Source: http://www.acco.org/childhood-cancer-awareness-month/

Does life after cancer exist? What is life after cancer? And will there ever be a life after cancer? The treatments children have to go through, the surgeries and the pain has a really big impact on children. It depends on their age and if they actually realized how sick they were or still are. For children of a certain age everything is really hard to cope with. You have to go back to school and have to act like everything is still okay, when in fact, it’s not. You don’t know how to act towards your friends, you have to get used to going to school since you’ve probably missed two or more years. How do you start again? Will your friends still be your friends? Can you even handle all the stress that comes with going to school? There are so many things a child has to go through before it’ll be “normal” again.

Cancer is the biggest bully out there and every child wants to survive. No one wants to give their fight up, because we are way too young, we have a whole life ahead of us, we want a future and to be able to do every other thing that people of our age do.

However, it is not that simple. “Life after” cancer is maybe as difficult as life with cancer. The chemotherapy will stay in your body for almost a year and you will still witness the side effect during that period. Radiation makes you super tired, you won’t be able to do anything for a few months. Your body needs to recover from everything it had to go through for the past years. Some medications are so toxic that pediatric patients can’t tolerate the recommended full course of life-saving treatments.

People often think that when chemotherapy or radiation is over and you are back home, everything is fine. That is wrong. The mental impact childhood cancer has is indescribable. You've been to hell and back. “Life after” cancer is lonely and dark.

People care about you when you're in the hospital, undergoing surgery and treatment, but after its done, it fades. And just like the treatment stops, the “attention” stops too. You’re used to getting loads of support from people, people care, people give you attention and all of sudden that is gone. People cheer for you and they want to help whenever they can. Often people don’t realize that your normal life does not begin when cancer treatment stops.

8

The development in finding a cure for childhood cancer by Lucinde Akkerman

Depending on the type of treatment that child has received, the oncologist will make a summary of all the things that happen straight after the last treatment.

Unfortunately, most of the time after treatment, children need to rest for a few weeks. This means that they’ll need to sleep and try to get back some of the rest they have missed. After 3 months a pet scan will take place and the doctors will see if the cancer is gone, stable, or still active and they need to start treatment again. These three months are really tough. You do not know what is ahead of you and have no idea whether you can start school again or will be starting an even harder and more dangerous treatment.

The hospital will support you throughout those three months of waiting with a lot of help from psychologists and educative workers. Educative workers are the advocates for school going children. They will explain exactly to the school what the child can and can not do. How many hours he or she is able to go to school etcetera.

Educative workers are very important for the families since schools are just like our whole society, they have no idea how tough life is after treatment and do not know the consequences.

Most children who are at a certain age will also get help from psychologists. This is very important because after treatment your whole life is changed. You may have lost a lot of friends, you do not feel like you could talk to people because they would not understand you, your body is weak, you have missed out on a lot of big events and you are scared of your appearance (bald, weight-loss/gain, wheelchair). Other than being afraid of what other people might think of you, children also have a lot of mental and emotional challenges. For example, some children fighting bone cancer have had their leg or an other limb, amputated. They have to see how all her/his friends play and have fun, while they can not do a thing. They want to be like everyone else, they want to live a life like everyone else and they miss their old life.

Children go though a lot of big changes and the process of getting used to your new life is long. That’s why hospitals provide so many help and assistance for the whole family, including the brothers, sisters and parents.

Even though most children are really young and not yet fully understanding of the situation, they go through many different fears and types of stress. One of them is “Survivor guilt”. A very common type of thing, not only under children but also adults go through this very often. During treatment and weeks were children are constantly in the hospital they come in contact with other children who are also fighting the disease. They are starting to know children and families from their hospital and create a bond. Sadly, not everyone survives and you have to say goodbye to your friends. The feeling of having survived cancer and knowing that your friend hasn’t, makes you feel guilty, even at such a young age. Instead of asking themselves “Why do I have this disease?” “Why me?”, they ask: “Why did I survive?”. This feeling of guilt can go on for months, sometimes even years.

9

The development in finding a cure for childhood cancer by Lucinde Akkerman

NOUN 1. SURVIVOR GUILT - A DEEP FEELING OF GUILT OFTEN EXPERIENCED BY THOSE WHO HAVE SURVIVED SOME CATASTROPHE THAT TOOK THE LIVES OF MANY OTHERS; DERIVES IN PART FROM A FEELING THAT THEY DID NOT DO ENOUGH TO SAVE THE OTHERS WHO PERISHED AND IN PART FROM FEELINGS OF BEING UNWORTHY RELATIVE TO THOSE WHO DIED; "SURVIVOR GUILT WAS FIRST NOTED IN THOSE WHO SURVIVED THE HOLOCAUST” 2

During your treatment your doctors prepare you for what’s next. For the late cancer side effects. Side effects from, chemotherapy, radiation and/or surgeries. Most people do not realize that the big and most dangerous side effects come after treatment and after a few years. When you’ve had your last treatment, the doctors and physical oncologists will tell you all about the follow up scans. These scans are not only for your cancer, but mainly for all the damage that your body got from the therapies. These late cancer side effects are called the long-term side effects. You can not predict whether someone will get these side effects but you have to prepare them for it.

Long term side effects are problems that occur after 5 years from the start of the treatment. These problems are different for everyone and depend on age, gender and type of cancer. Not everyone will obtain all the problems that are linked with their type of cancer, but they do have a higher risk of developing them.

There are two kinds of long term side effects; physical and emotional The emotional side effects are mainly anxiety, depression and fear of recurrence.

After treatment ends, one of the most common concerns survivors have is that the cancer will come back. We can not control whether the cancer will come back, but we can control how we let this fear take over our lives. Currently, every hospital provides counsels for their patients who are struggling with these side effects. These side effects are applicable for every type of cancer.

Many cancer survivors will experience physical long term side effects. These side effects are different for every type of cancer and based on the dosis chemotherapy and radiation you have received, the surgeries and (bone marrow) transplants.

2

http://www.thefreedictionary.com/survivor+guilt 10

The development in finding a cure for childhood cancer by Lucinde Akkerman

List of common long term side effects:3 - Sexual development problems; Both for boys and girls will chemotherapy and radiation in specific parts cause infertility. The inability to father a child, the inability to give birth to a child or keep up with a pregnancy. Chemotherapy will also change the levels of hormones and this will affect puberty, growth, energy and stress level.

- Learning and memory problems; Radiation near the brain/eyes and chemotherapy with a high dosis can cause learning and memory problems. Children often change schools and go to a different school with a contrasting school system.

- More cancers; One of the biggest fears from children is the high risk of developing new cancers, called secondary cancers. Both chemotherapy and radiation cause the possibility to get secondary cancers. Primarily skin, breast and thyroid cancers show as secondary cancers.

- Lung and breathing problems; Lung and breathing problems are one of the most common long term side effects.

Many children have a great risk of lung function problems and need to have lung tests a few times a year after their treatment.

Other long term side effects could affect children’s: - Hearing - Vision - Digestive system - Endocrine system - Bones -> weak bones

*Source: http://www.gramsbergensportvoorkika.nl/

3

http://www.cancer.net/navigating-cancer-care/children/late-effects-childhood-cancer: Late effects of childhood cancer 11

The development in finding a cure for childhood cancer by Lucinde Akkerman

My Life After Cancer I was diagnosed back in 2014 with cancer when I was 15 years old. I was in the hospital for months going through chemotherapy. I did not go to school, I did not see my friends and I missed out on a lot of things. I was on my own, the other children at the cancer ward were way younger than me. After my chemotherapy we thought the cancer was gone, but my scans showed a different case. It was still there and the chemotherapy was not enough. I had to start radiation. My biggest fear was becoming reality. The long term side effects of radiation were a lot worse than the chemotherapy side effects, which were mostly short term, such as being nauseous and tired. I did not want to go through radiation, I had never felt so sad before. I had to do something which I was so afraid of. I was told I had to prepare myself for lung and breast cancer when I was only 15 years old. By that time most of my friends had stopped talking to me, people were afraid. And instead of being cheered on, I had to do this on my own. Many times I’ve screamed and cried because I did not want to start the treatment. I’d rather die than go through more cancers and the other long term side effects of radiation.

However, because I was still 15 years old I had nothing to say and I started radiation in December. On Christmas day I was in the hospital receiving treatment instead of being with my family. The radiation was really hard on me and every day after my time in our “bunker” (room located under my hospital) where I received the most dangerous emission on Earth, I slept throughout the whole day and only woke up whenever I needed to eat dinner. I met Job at the radiation. He was my so called “Buddy”, meaning that he was with me every day during my time there. He accompanied me to every appointment with my oncologist and he was the only one I saw for a month and a half every day. He became my best friend and I felt like he was the only person who understood me. He made sure that even though the radiation sucked and it was a really hard tough time, I was still smiling every day.

He changed my life and made it so much better. I felt like I had no friends, but he was my best friend. After my last session at the radiation I cried, because I knew I had to say goodbye to him and I would be alone for the next few months. The hospital days were over and I was at home for months, sleeping the most of the time to try and get my energy level back on track. I didn't see anyone besides my mother and brother. My “friends” didn't visit me nor try to contact me. I thought that life after cancer would be amazing and I would throw a huge party to celebrate remission together with all my friends. But I had no friends left and I couldn’t celebrate being in remission, because I was, again, on my own. And besides that, the 12

The development in finding a cure for childhood cancer by Lucinde Akkerman

cancer wasn’t gone and will never be gone so technically, I will never be in remission. I thought life after cancer would be filled with loads of parties and trying to re-do everything I missed out on. I thought this would be the end of a chapter, but the emotional pain kept going. I missed Job, I missed my doctors, I missed my nurses and being able to talk to people every day, people who understood me. I experienced more mental issues than during the treatment. I wanted to scream for help, I wanted to yell at people for letting me go as a friend. I need them more my life than ever before.

In hospitals there are a lot of protocols and medicines, but there are no medicines that cure your post-treatment depression. There are no protocols on how to deal with being alone. Slowly I had to start with revalidation therapy, see a psychologist more often and I tried going to school for two hours every day. School was hard on me, because every day I saw people looking at me and talking about behind my back. I felt left out. So left out that I decided to change schools. My goal was to start a completely new chapter. A chapter where cancer did not a play a huge role.

Unfortunately, after a while I figured out that cancer will be in my life forever and will play one of the lead roles. It is a part of me and I have to accept that. My life was taken from me when I was only 15 years old and I’ve told myself to never let that happen again, but I know that cancer will strike again at some part in my life and I just have to wait for it and see whether it’s Hodgkin, lung or breast cancer. Or all of them. I am so done with waiting, but just like cancer, that has become a part of me. I have to accept that my life will consist of doctors appointments and more appointments. Of waiting for results and trips to the emergency room at night. That is my life until the day I die. No, I am not sad because of the cancer. It’s the things that cancer gave me and the opportunities it took from me. I wanted to have children, I wanted to have a life just like my friends, I wanted to go to a normal school, I wanted to go out and have fun and not give a sh#t, but instead I worry about medicines and pain attacks. I worry about my future instead of enjoying my life for the time I am here.

One of the people I’ve met passed away. He passed away when I was going through radiation. I’m still wondering why I didn’t pass and why he did. I’ve never felt more guilty in my whole entire life, he passed away while he was fighting the biggest battle of his life. He was way stronger than me and he deserved to live way more than I did. I do not know what to do to ever get rid of this feeling of guilt. This, is a part of childhood cancer. Some will live and some will die. It’s not a fantasy, it’s reality. And I never thought I would get in this situation. I am lost in a world where innocent children die for no reason..

This, is life after cancer.

13

The development in finding a cure for childhood cancer by Lucinde Akkerman

How much does our government spend on childhood cancer research?

Childhood cancer funding is very important and a big struggle for many researchers. Since childhood cancer is a difficult type of cancer, because it is in most cases DNA based and different for every child, it is tough to find new cures and medicines. The first thing I was told during my visit to the Princess Máxima Center was that the Dutch government does NOT support the funding for childhood cancer research. However, it does help the funding for adult cancer research. Weird, isn’t it? Childhood cancer research in The Netherlands relies almost completely on the Dutch organization KiKa (Dutch: Kinderen Kankervrij; English: Children Cancerfree). All of the funding for research is obtained from external funders, donors and funds.

The foundation of KiKa was a result of a request from Prof. Rob Pieters from the Sophia Children’s Hospital in Rotterdam and Prof. Huib Caron form the Emma Children’s Hospital in Amsterdam, who asked for more money for childhood cancer research. In the first meetings with both oncologists, it became clear that the need for more research for childhood cancer was right. The chance of survival stood for quite some time ' still ' at about 70%, while they believed that there was a breakthrough possible and the chance of survival needed to go up. The specialists were convinced that we could develop new treatment options to cure childhood cancer more often and make it ' friendlier ' to deal with. It is absolutely necessary to initiate innovative research, specifically aimed at children's cancer. Since the start of KiKa, back in 2002, the chance of survival has risen up to 75 % but, the current chemotherapies are so heavy and aggressive that children who have been declared cured for years, can still get certain organ infections and other very dangerous long term chemotherapy side effects. 4 KiKa has been raising sponsors since 2002 and have over 250.000 donors (according to the 2013 statistics). Those donors are very important, they are the only ones supporting childhood cancer research, without them, there would be no progress and the chance of survival would be dropping. KiKa's goal: raising funds for innovative research and other activities in the field of children's cancer, focused on less pain and struggle, more chance of surviving and a higher quality of life.

1. Increase the chances of survival.

2. Improving the quality of the treatment (less aggressive where possible).

3. Reduction of side effects after the treatment (effects later in life).

The Princess Máxima Center for pediatric Oncology is located in Utrecht, The Netherlands. It is fully specialized in pediatric oncology and it’s priority is to treat 4

https://www.kika.nl/organisatie-kika/doelstellingen-kika/ en historie 14

The development in finding a cure for childhood cancer by Lucinde Akkerman

and cure children with cancer. They use the best methods possible and prevent the development of the negative side effects in young cancer patients. They train and educate passionate scientists and have the most brilliant researchers working day and night to improve the pediatric cancer treatments. They want to make sure that in the future at least nine out of ten children will recover from cancer and have a bright future.5 Also a big reason why childhood cancer does not receive a lot of money is because the pharmacy industry does not want to put money into the researches for pediatric cancer. This is because the group of childhood cancer patients is much and much smaller than adult cancer patients, because of this the pharmacy industry won’t make any profit of it. Research is completely build on voluntary health organizations for childhood cancer (like KiKa). For many childhood cancers they still use the same treatments has in the 1970s. In the past few years a lot of new dugs have been developed for the treatment of adult cancer, but only three new drugs have been found for pediatric cancer. There is not enough money for more research.

I visited the Princess Máxima Center in Utrecht, it is the biggest childhood cancer centre in The Netherlands and it is the heart of all the childhood cancer researches.

Everything happens in the Princess Máxima Centre and every day there are professors testing out new medicines, cures and DNA mutations. I spoke to Laurens van der Flier, he is Managing Director of Research. He showed me all the labs and I saw some tumors being created by teams of researchers. It was more than impressive.

Laurens van der Flier explained to me that since the start of KiKa, back in 2002, they have been able to do over 100 new tests and researches. KiKa provides about ten million Euro’s a year for new cancer research. As said before, our government does not help the funding for pediatric cancer research. Right now the difference between childhood and adult cancer is not only the types, treatments and the side effects, but also how much money goes into research. Adult cancer receives over 600 million Euro’s a year from our government. The question is, why does our government support the funding for adult cancer, but not for childhood cancer? The answer is actually really simple.

Adult cancer research can be done in hospitals, in University Medical Centers. A University Medical Center does not only help people who are sick, they are also a university and they educate the doctors and oncologists of the future. Because they also have an educational function, they receive money from our government.

Childhood cancer research can only be done in a specialized childhood cancer centre. This center does not have an educational function, only researchers and professors who are specialized in childhood cancer are aloud to work with children with cancer. Not only do adult cancer research programs receive money from our 5

prinsesmaximacentrum.nl 15

The development in finding a cure for childhood cancer by Lucinde Akkerman

government, also more than 95% of the existing funds focus on all forms of cancer in adults.

A University Medical Center has five tasks; patient care, science education, scientific research, development, and training of professionals in the healthcare sector. This type of hospital is Academic Component and a pediatric cancer research center isn’t. Because of this difference adult cancer research earns about 600 million Euro’s a year to spend on new cures and medicines. Childhood cancer research only gets 10 million Euro’s to spend on new cures and medicines and fully relies on KiKa and KWF (The Dutch Cancer Society) Laurens van der Flier told me that with around 10 million Euro’s they can hire 100 scientists. You can imagine that 100 scientists is definitely not a lot when it comes to finding cures to save children’s lives. Also one of the main problems is that all of the money that KiKa provides and that goes into the pediatric system is not stable. It depends on how generous the people are, it depends on how well our economy is doing and if they are able to find companies who are willing to donate money. Without KiKa, companies and a prosperous economy, the research for childhood cancer would not exist. One of the biggest fears of Laurens van der Flier is that one day there will be a big scandal and people will stop donating money to KiKa and consequently all the studies will be stopped.

I want to give you a clear vision of what a new study/research costs and how long it takes. In the past 11 years, scientists have done a total of 277 researches. Most of them are still ongoing.

16

The development in finding a cure for childhood cancer by Lucinde Akkerman

List of some researches:6 Research Title Dutch Title English Centre Start Duration Completed in Total Cost

1 Cycline D1 sleutel naar betere behandeling van neuroblastoom Validating targets and testing targeted drugs in neuroblastoma Emma Kinderziekenhuis – AMC Amsterdam 2005 4 years 2010 € 480.541

Research Title Dutch Title English

2 Wie krijgt waarom infectie tijdens behandeling leukemie?

Infections and immunity in children with acute lymphoblastic leukemia Wilhelmina Kinderziekenhuis – UMC Utrecht 2005 4 years 2010 € 328.218 9 Innovatieve therapie voor kinderen met kanker: preklinische medicatie en moleculair evaluatie programma ITCC: innovative therapies for children with cancer. Preclinical drug and molecular target evaluation program Emma Kinderziekenhuis – AMC Amsterdam / Sophia Kinderziekenhuis Rotterdam – Erasmus MC 2007 4 years 2012 € 2.981.699

Centre Start Duration Completed in Total Cost Research Title Dutch Title English Centre Start Duration Completed in Total Cost Research Title Dutch Title English Centre Start Duration Completed in Total Cost Research Title Dutch

86 Het herstellen van vruchtbaarheid van overlevenden van kinderkanker; transplantatie van voorloper zaadcellen in de mens Restoring fertility in infertile childhood cancer survivors: bringing autotransplantation of human spermatogonial stem cells to the clinic Emma Kinderziekenhuis – AMC Amsterdam 2012 2 years 2014 € 585.442 113 Naar een verbeterde prognose voor kinderen met kanker: een centrum voor het uitvoeren van klinische studies (vervolg op project 42)

https://www.kika.nl/onderzoeken-kika/overzicht-onderzoeken/ 17

The development in finding a cure for childhood cancer by Lucinde Akkerman

Title English Centre Start Duration Completed in Total Cost

Improving the prognosis for children with cancer: a core-facility to implement early clinical trials (follow-up project 42) ErasmusMC – Sophia Kinderziekenhuis Rotterdam / Emma Kinderziekenhuis – AMC Amsterdam 2012 5 years € 4.157.421 *Source:

http://www.vorsten.nl/2015/11/06/groen-licht-voor-prinses-maxima-centrum/

18

The development in finding a cure for childhood cancer by Lucinde Akkerman

What will the survival rate for childhood cancer be in 25 years’ time?

Currently the survival rate for childhood cancer is around 75%, that means that one out of four children will die within five years. The Princess Máxima Center for Pediatric Oncology has clear objectives to try and bring the chance of surviving closer to the 100%: 1. The chances of survival bringing to 95% in 2025 by developing new treatments and reducing death due to treatment side effects.

2. Reducing the late effects by improving the treatments, so that by 2025, less than 50 percent of the survivors has to live with health problems.

3. Providing optimal palliative care and guidance to kids who can't be cured anymore and also help their families, to make the quality of life as good as possible.

4. Becoming the best Research Institute of Europe in 2020 and belonging to the top 5 best pediatric cancer institutes of the world.

5. Having an internationally recognized top training for pediatrician-oncologists and a top training for other childhood cancer related specialties. 7 During my visit to the Princess Máxima Centrum, Laurens van der Flier showed me the whole center and gave me all the information I needed. He explained to me that within a very short amount of time after setting their goals, they were already the largest pediatric Research Institute of Europe. They are now building a new center, where they want to bring all pediatric oncologists in the country together, to build and even more powerful team of specialists. The new building of the centrum will be much bigger and when it’s finished, it will be the biggest pediatric Research Institute of the whole World. They are developing a new method for families, parents and their children, where they can be together during the treatment of their son of daughter. They want to focus on the whole family, instead of only the child fighting cancer. It is very important that families are together during this hard time.

Scientists have discovered that mental health and stress has great impact on the recovery of a child after or during treatment. By bringing the families together they want to reduce the chances of children becoming depressed during their treatment.

7

http://www.prinsesmaximacentrum.nl/over-ons/hoe-en-waarom/doelstellingen/ 19

The development in finding a cure for childhood cancer by Lucinde Akkerman

*Source; Laurens van der Flier, presentatie Mannheim, 30-11-16

The Princess Mรกxima Center for Pediatric Oncology wants to offer the best possible care to children with cancer and their families, their goal is to find: the highest possible chance of survival with the least side effects during and after treatment. By putting care, research, education and training in one national centre, they can improve the survival chances and recovery of children and give them a better quality of life8. PMC is building the biggest pediatric cancer center in the world.

They aim to put all the children with cancer in the same hospital instead of the 7 specialized hospitals in our country. They think that concentration of specialization will lead to better skills. By bringing more children with the same type of cancer together, they can increase their knowledge of the disease. For example, on average we have seven pediatric liver cancer patients every year. Statistically, this would mean that every specialized hospital would have one liver cancer patient and every surgeon would do the liver surgery only once a year, but if we have all the patients in one hospital, than a surgeon can do the same surgery seven times a year and he could improve his skill. This would mean that more surgeons and oncologists can specialize themselves in one type of cancer.

8

http://www.prinsesmaximacentrum.nl/over-ons/hoe-en-waarom/waarom/ 20

The development in finding a cure for childhood cancer by Lucinde Akkerman

*Source: Laurens van der Flier, phD, presentation Mannheim, 30-11-2016

Scientific research is crucial for the enhancement of child survival and the reduction of late effects. The Princess Máxima Center therefore brings the best possible care together with the highest quality of scientific research. As a result, they want to strengthen both disciplines in the interests of children with cancer, now and in the future. PMS believes in a ‘ Shared care network ‘. A network that connects every childhood cancer center in the world and all the specialized university medical centers where children get treated.

Neuroblastoma is a type of pediatric cancer that is really hard to cure. It either does not react to chemotherapy or it grows back really fast. Usually children who have neuroblastoma go to the United States to get a specific type of chemotherapy, which was not available in The Netherlands until a few months ago. This, going to other countries, is also a method of the ‘ Shared care network ‘, whenever families want to go to a different country to try out new treatments, they are always aloud to do that, since every hospital and cancer center is connected. However, the treatment for neuroblastoma is since a few months also in The Netherlands available, the biggest problem is that the therapy costs a lot of money and most health insurance do not cover the costs of it. PMS always helps families in trying to convince their health insurance why they should cover the costs of new treatments.

Unfortunately, after the neuroblastoma therapy was finally in The Netherlands, scientists found out that the actual therapy was not as bright looking as thought.

The results were not what they had expected and the search for a better cure goes on. In the past years, the survival rate for neuroblastoma and the new medicines have not been improved. If you look at the purple (next page) line you can see that is been flat for a long time. Scientists are doing everything they can to find new ways to cure neuroblastoma, but since it such an aggressive type of pediatric cancer, research is is complicated. Researchers are now looking at new drug combinations for children with neuroblastoma. They also want to figure out whether a stam cell transplantation would work for neuroblastoma patients.

21

The development in finding a cure for childhood cancer by Lucinde Akkerman

By improving the palliative care they want to try and get the highest quality of life with less hars side effects. Right now the survival rate for neuroblastoma is 67%, but children who are within the age of one and four only have 43% survival rate. That makes neuroblastoma one of the toughest pediatric cancers to cure. Neuroblastoma is a cancer in the nervous system and often in the abdomen (SNS). It is very rare for children over the age of ten and most common for children under the age of five.

22

The development in finding a cure for childhood cancer by Lucinde Akkerman

*Source: Laurens van der Flier, phD, presentation Mannheim, 30-11-2016

For years, scientists have been focusing on treatment improvement. In the past 40 years, they were able to improve the survival rate for ALL (Acute Lymphatic Leukemia) by 80%. In 1970, children who were diagnosed with ALL had a chance of survival of 4%, now in 2016, that is 86%. ALL affects by far the biggest group of pediatric cancer patients. In the picture below you can see that between the years 1973 and 1984 there have been major treatment changes. However, in the last few years there have not been big discoveries for ALL treatment. It keeps getting harder to find new ways to improve the treatment. The end of the road is always the hardest.

Because ALL covers the biggest group of pediatric cancer patients, scientists focus a bit more on new medicines and cures for ALL. In my visit to the Princess Mรกxima Center I discovered that researchers often struggle. Laurens van der Flier explained to me that whenever they hire new scientists they always ask them whether they can handle stress and disappointments. Most scientists work for over two years on a new study, every day and night, but after two years, they find out that the answer was negative and their whole study did not show any new results. Being a scientists, in general, is a very hard job. You have to be able to handle failures. But sometimes a negative result is a also a positive result, because the doctors find out what they should NOT do. For pediatric cancer research, nine out of ten studies fail. Finding new cures and medicines is harder than most people think, but they will go on and 23

The development in finding a cure for childhood cancer by Lucinde Akkerman

look for new ways to reduce the side effects and raise the survival rate, because they only need one big outcome to come closer to the 100% chance of survival.

*Source: Laurens van der Flier, phD, presentation Mannheim, 30-11-2016

Also one of the big new projects of the Princess Máxima Center is targeted therapy.

It is a new kind of drug and different from the standard chemotherapy. Targeted therapy is a treatment that focus on specific parts of the body where the cancer cells have been developed. Sometimes these targeted drugs work better than chemotherapy, even when the chemotherapy does not work at all. Also the side effects of these new targeted drugs are different and most of the times less severe.

Besides targeted therapy, pediatric oncologists also want to focus on different amounts of chemotherapy to try and make the side effects and long term is effects as low as possible. They want to focus on different protocols for every child and make their own specialized treatment method. This will result in children with the same disease getting a different dosis of chemotherapy based on the size of the tumors, the amount, age, gender and growth. By giving less chemotherapy, where possible, the side effects will hopefully be more ‘ friendlier ‘, easier to handle and have a smaller impact on the future.

The Princess Máxima Center also works with a new strategy for their research teams. Every new research is led by a scientist and he is allowed to bring together his own researchteam. These researchteams are located at the Princess Máxima Center where all the tests are performed. During my visit a saw all the labs and new tumors being made. These tumors will be out in animals and this way the scientists 24

The development in finding a cure for childhood cancer by Lucinde Akkerman

can see how the tumors reacts to a specific type of treatment. Sometimes a treatment works on a mouse, but not a child. Choosing whether to try and give patients a new medicines for the first time is two sided. You really want this to be a success, but you are scared for a negative outcome. What if the child does not survive the new cure? What if we made a mistake? Trying out new medicines is a big struggle. For that reason parents (sometimes the child) are the ones making the decision. Beforehand they are always told what the consequences could be.

Focusing on the long term side effects of cancer is very important. We need to know what we are exactly doing with out medicines. What chemical treatment we are putting in our patients and what kind of result this has for the future. There are a lot of pediatric cancer patients who have been ‘ free of cancer ‘ for several years, but are struggling with heart diseases, lung diseases, memory loss and new second cancers.

The Princess Máxima Center has a new concept. It is called the ‘ LATER ‘ plan. For people who have had pediatric cancer and are struggling with all the long term side effects. Scientists are doing research together with people who have had battled with childhood cancer. Together they want to reduce the chance of developing new diseases after pediatric cancer treatment.

I wanted to know what would happen if today or tomorrow someone would discover a cure for all types of pediatric cancer. It would be a miracle and it would change someone lives. Unfortunately, the chance that that would ever happen, is close to non-existing.

Laurens: “If we will find a new medicine, a better way to cure children, a new type of treatment, it would take between 12 and 20 years to be able to use that new method in hospitals. This is because we do not have enough money, we do not have the support of our government. Sadly, today, we are doing most research for the future pediatric cancer patients.”

When I asked Laurens van der Flier about the survival rate for pediatric cancer in 25 years he struggled to answer. We can simply not see what the future holds for us and whether we will have enough money for more research.

Laurens: “I think doing these statements are always very tricky. The media will always focus on what you said, and you only need to make one mistake and you will get a big slap in the face from the media for not being right. We simply do not know what the survival rate for pediatric cancer will be in 25 years. Because IF we knew it, we would already have achieved it. But we do need to make a commitment to all of our donors and people who are supporting the pediatric cancer funding, they want and need to know what we are up to and if we tell them that we have no idea what the chance of survival will be, they will stop supporting us and without their support we could not be doing researches. Our main goal right now is to make the side effects and long term side effects less severe and we want to give children a future with a higher quality of life. The best thing would be if all of our scientists would be unemployed in a few years, haha.” ‘ 25

The development in finding a cure for childhood cancer by Lucinde Akkerman

Laurens: “I truly believe that within 25 years we will be closer to the 100% chance of survival, but we will not be there yet. To be honest, I do not know if that will ever happen. Cancer is made up from mutations, and we simply cannot change mutations. There is a way for us to TRY and change mutations, however, that is not ethnic approved, so we are not aloud to do it.

Within 25 years the long term side effects of pediatric cancer treatment will be reduced. Within 2 years our new hospital will open in Utrecht and I believe that with more concentration of care and specialization of pediatric-oncologists we will be on our way closer to the 100% chance of survival. I hope that our society will keep believing in us and that we CAN find a better cure for childhood cancer, I hope that people will keep donating so we can continue our road to a better life for children with cancer. We only need one breakthrough.�

26

The development in finding a cure for childhood cancer by Lucinde Akkerman

How does our society look at childhood cancer?

Our society plays a huge role in the funding for childhood cancer research.However, they are not aware of that. Childhood cancer is not a subject that people speak about, it is something that is so emotional and tough to see that people tend to look away. If they don not see the problem, the problem does not exist. But reality is, that pediatric cancer kills every two days a child in The Netherlands. We do not see pictures of sad and crying children on the television. We do not see pictures of devastated families who have just lost their son, daughter, best friend, grandchild or cousin to cancer. We do not see nor hear their stories. Childhood cancer is the number killer in our country, it kills more children every year than any other disease, but why don’t we talk about?

Childhood cancer research funding completely relies on the donations of our society, so I asked 80 people to fill in a survey for me to and be completely honest. I wanted to see if people knew what childhood cancer really is.

The results were not shocking for me, but mainly for them.

Q: “Is there/has there ever been a child in your area who has/had cancer?”

Yes

No

40% 60%

Q: “Do you know that childhood cancer is completely different than adult cancer?”

27

The development in finding a cure for childhood cancer by Lucinde Akkerman

Yes

No

47%

53%

Q: “Have you ever been scared that your own children would get cancer?”

No

Sometimes

Yes

1% 29% 70%

Q: “Whenever you see commercials about childhood cancer, does that effect you?”

Never Thought about it Very often I don't have children

23%

19%

9% 49%

28

The development in finding a cure for childhood cancer by Lucinde Akkerman

Q: “Would a commercial effect you more if you would have a child in your inner circle fighting cancer? “ No

I think so

Yes

10% 46% 44%

Q: “Do you know that childhood cancer is the number one disease that kills children?”

Yes

No

34% 66%

Q: “Have you ever donated to KiKa?” Yes

No

I want to

10% 30%

60%

29

The development in finding a cure for childhood cancer by Lucinde Akkerman

Q: “Do you believe that there is already enough research for childhood cancer and we need to focus more on adult cancer since that affects a larger group?”

Yes

No

We need to focus on both

9% 0%

91%

Q: “Do you know that pediatric cancer gets around 10 million Euro’s a year for research and adult cancer gets 600 million Euro’s from our government for new research?”

No

Yes

0%

100 %

People were shocked to find out that our government does not support the childhood cancer research funding. They have no idea how important they (the society) are and how important awareness is. Most people said that more childhood cancer research is very much needed and that they have donated to KiKa one or more times.

I wanted to know whether childhood cancer commercials had an impact on people and 70% of the people I asked said that they do make an impact. It is very important that people realize the danger of childhood cancer. The thing that shocked me the most was the fact that people do not know that childhood cancer is the number one disease that kills innocent children. This, is exactly the reason why we need more awareness. Almost everyone said that we need more childhood cancer research, they had no idea that the pediatric research industry fully relies on their contribution to KiKa. I think our society would start donating more to KiKa when it comes clear how necessary donations are for research. Right now, our 30

The development in finding a cure for childhood cancer by Lucinde Akkerman

society lives with the thought that pediatric cancer research earns the same amount of money as adult cancer. The difference needs to be made public.

People think about their children having cancer and it does frighten them. Everyone is afraid of cancer but why don’t we talk about? Why are we not open to each other and speak op about our fears? We need more awareness for pediatric cancer so that we can prevent it in the future. We need to make people believe that we can make a change and a positive different to our world. To be able to raise more awareness for pediatric cancer we need to make people aware of the reality of childhood cancer.

We should not be saying that only 500 children in The Netherlands get the diagnosis cancer on year basis. We should tell people that every two days a child dies from cancer. We should stop looking away, start facing the real world and take action. Right now it is almost as if the families who have a child who is fighting cancer are putting so much money in pediatric cancer research that you could almost say that they're inventing their own medicines for their children. Not only families should support research, but also by standers need to help.

September is childhood cancer awareness month. We honor those who have lost their fight, those who are still fighting and those who have to live with all the consequences of childhood cancer. We celebrate our improvements and we recognize how much we still have left to do. This month could be very hard for families who have experienced childhood cancer from a close view. It is a period where people share their stories and help each other. It is a month where every childhood cancer institute tries to gain as much awareness as possible for childhood cancer. They want to wake people up and show them the real world of childhood cancer. As a nation we need to help each other and we need to make each other stronger. Childhood cancer’s biggest problem is the lack of awareness and funding.

We need to raise our voices for the children who do not have voice (anymore). We need to change the lack of funding and we need to make childhood cancer one of our biggest priorities. Every month over 25.000 children get told that they have cancer, every month 6667 families experience the loss of a child9. Awareness is the key to more research. We have waited for too long and it is time for action. It is time to show people what they can do. Empathy is far from enough. Nowadays we can do almost anything we want whenever we want. We can connect via Social Media with people all over the world. The ways we use Social Media are endless. We are on Earth with a mission, a mission to stop Global Warming, to stop wars and to build new homes, but there is another mission way closer to us and that is to stop childhood cancer. We can use Social Media to spread awareness to every place on Earth and help our most vulnerable citizens. Together we have to set a goal to stop this silent killer that keeps taking lives day after day. Every day children are diagnosed and dying, but people don’t know. People are unaware. Stop looking away and start taking action. Everyone deserves a future. I do too.

9childrenscancer.org/gogold/

31

The development in finding a cure for childhood cancer by Lucinde Akkerman

*Source: https://www.acco.org/

Conclusion Childhood cancer is still the biggest bully on Earth, but there have been major improvements since the start of pediatric cancer research. It is amazing that today 86% of ALL patients survive while back in 1970 they had a 4% chance of survival. I am beyond proud of all the people that work together to save the lives of thousands of children.

I am, just like Laurens van der Flier, sure that in 25 years the chance of survival will definitely be closer to the 100%, however I also do not believe that we will be there yet and I am not sure if that will ever happen. I think that going from seven different specialized centers to one will be a big advantage/development and I believe that it is better for the patients. In this way they will meet with more patients. I have found out that help and support from your family and friends together with being able to exchange experiences with fellow sufferers, makes it easier to cope with the illness.

As a childhood cancer fighter myself, I have seen the pain my family has to go through, I have witnessed the look of horror whenever I saw myself in the mirror without hair and a swollen face from the amount of medicines I received. I know what it is like to have your life taken away from you and spending weeks in the hospital, waking up at night from all the noises from the machine that kept me alive. Having bad news conversations every day and not seeing you friends for weeks. The world of childhood cancer is not as bright looking as everyone thinks it is and we need to change that.

We need to make clear that the funding of childhood cancer relies on KiKa and that without people donating money there wouldn't be research.

Having said this, it’s high time politics and society get together to inform the public about the real figures and to raise more funds for research and educating specialists in order to finally kick this disease out of our world. We need to change our world, and I believe that if we work together, as one nation, we can save innocent children's lives, we can give them a higher quality of life and we CAN make a difference.

32

The development in finding a cure for childhood cancer by Lucinde Akkerman

*Source: http://www.rtlnieuws.nl/nieuws/binnenland/doorbraak-kinderkanker-we-dachten-dat-ze-uitbehandeld-waren

33

The development in finding a cure for childhood cancer by Lucinde Akkerman

Source of Information - http://www.prinsesmaximacentrum.nl/media/1639/14032015-nrc-kinderkanker-is-echt-anders.pdf

- https://www.stbaldricks.org/blog/post/adult-cancer-vs-pediatric-cancer-the-difference-starts-onday-one/

- http://www.acco.org/about-childhood-cancer/ - https://www.cancer.gov/research/areas/childhood - http://oncolex.org/childhood-cancer - http://www.cancer.org/cancer/wilmstumor/detailedguide/wilms-tumor-what-is-childhood-cancer - http://www.theatlantic.com/health/archive/2013/01/our-disproportionate-focus-on-adult-overpediatric-cancer-research/266684/

- https://www.ihadcancer.com/h3-blog/01-16-2016/i-wasnt-prepared-for-the-mood-swings-thatcame-after-cancer

- https://www.kika.nl/onderzoeken-kika/overzicht-onderzoeken/ - https://www.catharinaziekenhuis.nl/files/Pers/PDF/20130416-Oncoloog_internist_GeertJan_Creemers_De_Houdbare_Mens.pdf

- http://www.prinsesmaximacentrum.nl/professionals/zorg/skion/ - http://www.health.harvard.edu/blog/the-mental-and-emotional-challenges-of-surviving-cancer201103282146

- http://www.cancer.net/navigating-cancer-care/children/late-effects-childhood-cancer - http://www.cancer.net/survivorship/life-after-cancer/coping-fear-recurrence - https://nl.surveymonkey.com/analyze/IvQNXJLsnJsrFxjeR1OJm_2FHBY_2FEfpo9MGu_2BliTweMRM_3D

34

The development in finding a cure for childhood cancer by Lucinde Akkerman

- http://bepositive.org/this-life-after-cancer/ - http://www.prinsesmaximacentrum.nl/over-ons/hoe-en-waarom/waarom/ - http://www.cancer.net/cancer-types/neuroblastoma-childhood/latest-research - http://www.cancer.org/cancer/neuroblastoma/detailedguide/neuroblastoma-new-research - http://www.childrenwithcancer.org.uk/neuroblastoma - http://www.stoppingcancer.net/stampingoutchildhood.html - http://www.acco.org/childhood-cancer-awareness-month/ - http://www.thekidscancerproject.org.au/about-us/childhood-cancer-awareness-month - http://www.acco.org/blog/childhood-cancer-awareness-month-2016/ - http://www.fontanaheraldnews.com/opinion/let-s-remember-to-recognize-childhood-cancerawareness-month/article_881b7cc2-7b5a-11e6-9fec-932dd05d13c8.html

- https://www.ncbi.nlm.nih.gov/books/NBK221740/ - https://www.kika.nl/organisatie-kika/historie-kika/

35

The development in finding a cure for childhood cancer by Lucinde Akkerman

Thank you word I want to thank Laurens van der Flier for inviting me over to the Princess MĂĄxima Center and answering all my questions. I have learned a lot during my visit and I am very thankful for the experience and help. Without Laurens I wouldn't have the information I needed to write my final paper and this project would not be possible.

I also want to thank KiKa and SKION for their help and support.

I am so proud that I could finally do something back for the people who are trying to make my life as easy as possible. I have learned even more things about my disease and I am now a 100% sure that I want to make childhood cancer awareness my top priority in life. I found writing this paper in English harder than I had expected but I am so proud that I have done it and I did not give up.

My goal was to open people’s eyes and I hope I have achieved that.

36