Corona verhalen

Quarantine experiences from Shymo’s environment

Shymo has been in quarantine since March. By reading her blogs you have been able to experience a bit of how she experiences this and it has not been easy. Family and friends who can’t come over to give her a hug and who at the beginning of the quarantine only could talk to Shymo in front of the window with a phone. But how is this period for the people around Shymo? How is it not being able to see your (girl)friend or sister and how is it to be in quarantine to protect your daughter/sister/(girl)friend? Some of the people who have gone through this have written down what this experience has done to them and still does.

Siem

When in march the coronavirus broke out in the Netherlands and our prime minister was holding the press conference where he explained the safety measures, the door went shut at Shymo’s home. No one in and no one out. Because for Mo corona is life-threatening and fighting against one life-threatening decease seems enough for all of us. So out of the blue there was a real quarantine. I was not with Mo at the time, which meant that I could not see her. This made perfect sense but was hard to cope with. Especially because there was no clarity on how long all of this would take and when I would be able to hold Mo again. So in an instant, besides the fight to cure Mo, we got into another fight with another danger.

For safety of Mo and due to the lack of information about the virus we had to live separate from each other for three months. A couple times a week I sat in front of the window to talk. Those moments where nice, because we were able to see each other, but I also experienced these moments as very painful. The saying goodbye, not holding each other and losing precious time with each other was hard to deal with. In the life that we share it’s so important that you can there for each other and with each other. And that in an instant we were not able to see each other on a daily base anymore was very hard for me to accept; such as the moments I could not be there to take care for Mo, but especially the when she felt terrible and I could not be there.

Because of that I felt the necessity to, whenever the possibility would arrive, to move in with Mo. After four months that moment arrived, amazing! After being in quarantine for two weeks and an antibody test, we were quite certain that I did not have or already had corona. On Monday the 29th of June I moved in with Mo. It was amazing and the first hug after such a long time felt magical. We belong with each other and felt that immediately from the first second again. After an hour it felt like we never had been separated from each other. I could not get happier, amazing! Life as it is now remains complex with corona because the rest of my life is on hold. But the most important thing is that Mo and I can spend time together, and I’m always there for her. A big problem solved, which gives me a big smile on my and Mo’s face!

Ilonka and Ruud

Back to the second of March. Shymo is being hospitalized in the Princes Maxima Centre. On the third of March Mo undergoes surgery. She undergoes a biopsy. During that week of the hospitalization we get the feeling that the coronavirus is on its way. Meanwhile we’re all back home and it’s the 13th of March, Friday the 13th. The whole week it’s been about corona on the news. On the 14th of March I (Ilonka) have a workshop in my agenda. I look at Ruud: “is it wise?”. At that moment I call me friend who I’m doing the workshop with for her 50th birthday. Meanwhile Ruud calls the company who gives the workshop. We decide to go. It didn’t feel right but we had an amazing day. On the 15th of March at 19:00 there is a press conference from our prime minister. He says a lot but I’m not hearing it anymore. When our prime minister is done I hear myself say to my daughters and Ruud: “We are going in lockdown. No one in and no one out”. It’s only for three weeks, we think. I send a message to my customers, friends and family where I explain that we want to protect Mo as much as possible. Everybody, and I mean everybody, fully understands.

Soon we get stuck on practical matters. For instance, Mo has to go to the hospital once a week, fand the groceries which we get delivered once a week will continue in such matter, right? It was chaos, madness. After two and half weeks we were finally able to get groceries delivered. And even at that moment there were no cleaning products, tissues, pasta, rice, canned beans or toilet paper available. NO TOILETPAPER!!! Where do we have to wipe our … with? Often people laugh about how stocked our shelves are – just like a supermarket! – so with 12 rolls of paper towels and some creativity we managed. One friend reaches out to me and asks if I still have some pasta available? I’ve been to multiple stores but there isn’t any. Of course I say, do you want spaghetti, penne, macaroni, tagliatelle, fusilli, gnocchi or ravioli…? Oh and I also have some whole grain lasagna. To which my friend says, “ehh, anything will do”. She is secretly impressed as she goes silent. “Enjoy your dinner” I yell and I don’t need anything back because we have plenty. We also ask for help from our surroundings, something we learned when we founded Stichting Help Mo Nu! Friends went for us to the market, the neighbor across helped us with getting some toilet paper and it keeps on going like this.

The lockdown got extended and so did our quarantine. “Will we make it financially?” I ask Ruud. “Yes, we’ll manage as we won’t go on holiday this year”. Problem solved, we think. Then one of our ministers mentions that we’ll get four thousand euros. If we really watch our spending we’ll manage! “No…” says the minister with a big smile. “This is not for the self-employed people, they have chosen for this!” he says. I hear myself yelling to the TV: “Yeah right you pancake! We chose that our daughter got sick and that covid becomes part of our life. with your pinocchio nose, idiot!”. “Calm down” says Ruud. “He can’t hear you”.

We struggle on. Days become weeks, weeks become months. When we suddenly realize, we haven’t seen our youngest son for five months. We arrange transportation and finally on Sunday the 12th of June the whole family is complete in the garden on appropriate distance. Amazing. Meanwhile it’s the end of August and we’re still struggling on. But fortunately lots of friends and our family make it possible to carry on. Unimaginable all the things that are being done for us. No one knows how long it will take, but we are so done with this! With lots of patience, love and positivity we’ll get through. Covid is not even our biggest problem.

Gylian and Charlotte

From March till July we have been in quarantine together. No one in and no one out, to protect ourselves and the people around us. Groceries were delivered and we only went outside if we really had to. After a few weeks of quarantine we started with a daily walk to get some exercise and fresh air. We were coping well with the two of us. We both did our own thing and the apartment is big enough to have our own space. But it wasn’t all ‘just fine’. The worst was that we were not able to see our family. From the infamous press conference the Korver residence went in full lockdown, to protect Shymo. People could visit, but were not allowed to come in. In front of the window we could talk through our phones, it worked for the time being, but wasn’t ideal.

We were not able to see Shymo from March till June. As we were sticking to the rules as good as possible, we avoided public transport during lockdown and were bound to our apartment in Amsterdam. We did call and facetime a lot with Shymo, which was fun, but never enough. It were snapshots and were just not seeing the whole picture. You can’t look at each other, or hug… Eventually we had to buy a car because of a new job and that instantly gave us some more freedom. From that moment on we could visit at least once a week to sit and chat in front of the windows with Shymo and the family, that was so nice! We also could visit for Shymo and Zyara’s birthday and visited often to have a coffee in front of the window. Because of the low chance of spreading in the open air it was decided after a while that Shymo could go outside. From that moment on we could sit in the garden and have a meal together with Shymo without a window separating us.

Currently we visit Shymo at least once a week and it’s so nice that we can see her without being a direct danger to her, but it remains terrible that we cannot give her a hug.

We stick to the guidelines as good as possible, to protect Shymo and all the other people who have an increased risk. If everybody contributes in that manner we’ll get rid of this terrible situation as soon as possible.

Zyara

How I experience(d) quarantine? Well, it wasn’t easy. It is what it is so you want to make the best out of it. The first period I experienced it as cozy where I could have quality time with Mo, while everybody around me was complaining that it was taking too long. And now we’re still here while everybody else has been on vacation. And us? We’re still inside since March and nothing has changed. That I’m with Mo all the time also means that I haven’t been with Mats for a long time. Which is not nice.

Now it’s almost September and classes are starting soon: how are we dealing with that? That is just one of the questions to which you have to figure out an answer yourself and it will continue to be like that for a while. As my dad is at home more often I decided to join him with chores around the house. What else is there to do? I can’t sit on the couch the whole day. Now Siem has been around for two months, which is good. We’re together when Mo, Mom and Dad are at the hospital. We cope on like that and we’ll see we can and cannot do and when.

Corona has not made things easier for us, but the positive vibe is still there, to call it like that. Otherwise it would have been a lot harder.

Mirte

Because of corona it is dangerous to get too close to Mo. Because of that Mo went in to quarantine. The only possibility to see her was through the window. Shymo was inside in her wheelchair with Siem, and me and the girls were outside. We used Facetime to talk to each other and could see each other in real life!

I enjoyed being able to see Shymo through that way and to chat, but you did notice it did not feel ‘real’. On her birthday Ruud transformed the doorway with a plastic screen. Because of that we could see each other!
Since recently I’m allowed on the balcony. We go through the house with a facemask to get to the balcony. Mo is sitting in her chair in front of the sliding doors, which are allowed to go open! So now it feels like I’m really visiting her at home. It’s hard not to jump at her and cuddle but I’m very happy that I can see her in ‘real’ life.

Kanjerketting Shymo

The Persistent chain

Hi Readers!

My name is Zyara and as most of you already know, I’m Shymo’s sister. My mother and I are the ones who maintain Shymo’s persistent chain.

The persistent chain launched in 2006 and is established by the Parents, Children & Cancer association. The association supports family’s with a child that is suffering from cancer. To support these children, they came up with a system made up of beads. Each bead has a different meaning, ranging from treatments or examinations to different events. Shymo also had different kind of beads around her chain such as the ones for radiation treatment, getting a shot, anesthesia, hospitalization, surgery, injections, you name it. As of late 2007 the persistent chain has been introduced into all pediatric oncological hospitals in the Netherlands.

The association’s supplier of the beads is BSCI certified. This means that the producers that they collaborate with are providing good working conditions for its employees. Every year over 200.000 beads are being produced for children with cancer in the Netherlands.

For us as a family the chain, keeps us aware, helps to explain to others but also creates an image to visualize what Shymo already has been through. Meanwhile her chain holds 1027 beads and is over 13 meters long.

Only when we started in the PMC hospital did we start with the bead chain, because that is when we discovered its existence. Which is quite strange, since the initiative started that the VUmc where Shymo was being treated before. That is why we build up quite a lag but thanks to the amazing people of the PMC we did get all the missing beads. Our experience is that in the hospitals for adults the persistent chain does not get a lot of attention, while this is also a type of support for young adults!
A lot of people don’t know what what Shymo is actually going through. But this chain clarifies a lot and helps others to in a simple manner read her story; because every bead tells a story.

When Shymo has been at the hospital and had all her treatments and consults, we go to the doctors assistant and get the beats from the storage. At home we collect these and sort them in a little pink tray and as soon as it’s full Shymo and I string them to the chain.

Sometimes it happens that there is no bead for a particular treatment, but even for that there is a solution! You can make your own bead from a special kind of clay. Sometimes they even have special beads which Shymo gets from someone in the hospital. Recently she got a Proud-as-a-bear bead to live up the chain! Ofcourse we are also as proud as a bear and it is very nice that we are able to record that with a bead in the shape of a bear head.

We do hope that not to many beads will come our way anymore and that Shymo cures. But for now we will keep collecting them…

Shymo en Elsa

Physiotherapy with Shymo

Being Shymo’s physiotherapist, she asked me to write a blogpost. My name is Elsa and together with my colleagues from the SMC we have been treating Shymo for over two years. With this blog I’ll try to explain what we actually do for Shymo.

The first intake with Shymo was on the 15th of November 2017. During this conversation we spoke about her ability to function, limitations and targets. After that, during her physical research it became clear that she could walk with crotches as her right leg was functioning well. The power and directing of the left leg was a lot less. Her main goal was to be able to walk without the crotches, and to pass for her high school exam. With lots of dedication Shymo passed for her high school exam that year. Despite all of the hospital visits, periods that she was feeling weak, and all of the time that she has spend on physiotherapy, she reached that target. Unfortunately it did not succeed to pick up her diploma without crotches. But she was capable of standing straight without the crotches, even tough this took a lot of energy.

We started with two sessions a week but quickly intensified it to three times a week and it even became a part of her daily life. Shymo always looks forward to come to us. But sometimes she has a bit of a mood in the morning. Fortunately she forgets that quickly as we start with her exercises and during that we have lots of fun.

During our sessions in the beginning we mainly focused on core stability and stability for both of the legs. Despite that her right leg was functioning quite well, you don’t want to overload it. She still needed that leg in order to stand and walk.

After a period with a lot of practice, it became a lot harder for her to stand on two legs, as well as the walking with crotches. The control and the feeling of her right leg started to become less, and the number of spasms increased. The consequence was that the trust in walking and standing decreased and it became harder to cope with. We did continue to find her limit. First without splint, later with a splint and brace. The goal of our exercises was to keep the functioning at the present level, improve stability of her body as a whole and to keep her bone density. To have a proper bone density it means there has to be pressure on them. Eventually it was possible for Shymo to stand for 15 minutes with support. During these 15 minutes there was enough to talk about like serious, but also less serious topics. But when Shymo had to laugh a lot, her muscle tension decreased, during which her supervisor needed to have a good reaction time.

Unfortunately Shymo remained in the hospital for two weeks during August. During that period she heard that the tumors have grown and that her paraplegia increased upwards. The consequence was that the functionality of her body changed and that Shymo had to be taught new methods to continue to function as good as possible. Both at home and at the practice. After a period of home treatments where we trained here core stability and mobilized her legs, Shymo was finally strong enough to come to us at the SMC. Cycling was not possible anymore and Shymo had to start using the arm bicycle. Not her favorite, but a good exercise for core stability and her shoulders. The creativity of the exercises is continually being tested and beside that the exercised need to have a goal, we like to keep it fun as well. That is why we circulate the arm cycling with boxing, bal throwing, sit balance exercises, abdominal exercises or push-ups. These are only a few of the exercises which Shymo is still very capable of.

Three times a week physiotherapy, one up to one and a half hours of training and mobilization. It has a lot of impact on Shymo and her life. And not only on the life of Shymo, but also of her family and friends. Because whoever brings her, it means that they’ll be there all morning. Leaving her house at 9, to be home around 12. In the meantime Ilonka decided to her workout as well at the same time. Something she has never done before.
After the session, Shymo needs a rest. If we know that she still has stuff to do in the afternoon, we try to take that into account for her workout.

We understand very well that this is not easy, but despite that she has to do physiotherapy, we do try to make it as fun as possible.

At this moment we’re in her second period of home exercises and we are getting Shymo ready to start with her ‘favorite’ arm bicycle at our practice. Until that time we will visit her at home where the exercises are focusing on mobilizing, stabilizing, and now as well detonating the shoulder- and neck-muscles. With detonating I mean that we try to relax the muscles as much as possible. Her neck- and shoulder-muscles are constantly working, because these are the muscles that Shymo can move around with.

I hope that you have gained some insight in Shymo’s physiotherapy, and how hard she is working to get better. We will, where possible, continue to fight with her to make her physically as strong as possible. Shymo is amazing!

Tante Maria met Shymo en Zyara

Aunt Maria

Hi,

I am Maria, Shymo’s ”tante”. My father and Ilonka’s father were brothers. After WW2 my father moved to Sweden and met my Swedish mother. That´s why I am living with my family outside Stockholm, 1 400 km away from Westzaan. Through the years our family and the Korver family have been following each other and now and then met, mostly in Sweden. The Korver family have always been my strongest connection with my father’s homeland. I am still a little sad that he never taught me Dutch; I could have had another language for free.

Through telephone calls, a visit to Westzaan and the foundation´s website, we are following Shymo and there isn´t a day I don´t think of her and the family. It strikes me how much they all have to wait. Wait for test results, wait for calls from the doctors, wait for medicine and information. Shymo’s whole life is put on ”wait” and the waiting time hasn´t been easy nor painless for her. Daily visits to the hospital, physiotherapy, side effects from the medication and other drawbacks. And yet, instead of doing nothing Shymo starts her webshop! What an attitude she has, that deserves great respect. Together the family started the Help Mo Nu! foundation and we are all absolutely amazed over what fighters they are!

Since I am 1.400 km away I can´t just go over and have a coffee, give a hug, cook a meal or help with something practically. Therefore it makes me so glad to see how Shymo´s boyfriend Siem and other friends, volunteers and a whole community stands at Shymo´s side and try to help with whatever they can.

With love from me and my family,

Maria

Bootcamp voor Mo

Bootcamp for Mo

Bootcamp for Shymo: she can’t do the sports herself, but she is definitely stronger than all the participants combined

It is safe to say that Shymo has become an understanding by now in between the boundaries of the Zaanstreek (the area Shymo lives at, bordering Amsterdam). Even though the foundation Help Mo Nu! Is just yet existing for eight weeks. You only have to walk into a random store and you will notice traces leading you to the one and only Mo. And even more, you can not think of something that is not being organised by the community with only one purpose: let the counter on helpmonu.nl rise as quickly as possible. On Sunday the 15th of September, it was up to Shymo’s gym, the SMC in Zaandam, to collect as much money as possible for their brave sportster. The form in which they have cast it was a real bootcamp, through which they raisen an amount of 732,45 euros.

“Before I got my disease I did dancing, not this kind of stuff”, Shymo says smiling while she is looking at her friends and family getting tired out in the bootcamp. “When I am going to the gym here, I’m doing a lot of boxing. I has become my new favourite sport and besides that you are training almost every muscle with it.” Having Evi (a friend) and Charlotte (her sister-in-law) by her side, she seems to enjoy herself easily while watching the bootcamp. “I expected it to be hard for them, but this is way more of a challenge than I thought it would be. Fortunately they’re still smiling.” Approximately forty sporty people have come to their feet, with the primary intention to collect money. “But the most important thing today is, I think, that everyone is having a good time”, Shymo says without a second thought. Due to the consequences of her disease (amongst other things a paraplegia), Shymo is moving herself around in a wheelchair nowadays. She cannot participate in the sporting activities organised on behalf of her. “Of course I feel sad about that”, she explains, “but I do have the feeling that I’m one of them at the moment. Honestly, I am feeling part of whole in every event that I have been to so far, and that is worth something as well.”

If we talk about Shymos endless positivity, as a human being you could only feel a indescribable admiration. Well, you could also be very jealous, or you may be incredibly surprised about it. “I really never met a personality like Shymo before”, says Margreet. She is one of the participants in the bootcamp and also Shymo’s’ mother in law. “That is not something I have been realising since she is ill. No, not at all. I know Shymo way longer than that, she lives only 50 meters further in our street for years now. Shymo was known for that amazing personality I’m talking about far before the cancer came knocking on her door”, says Margreet. As Siem his mother, Shymo’s boyfriend, she is very thankful for the fact that she can stand this close at Shymo’s side in her fight. “How she and Siem are taking care of everything is really admirable, but I’m also very happy that I can sometimes help out as well. The families are keeping themselves kind of behind the scenes when we are talking about the foundation. Particularly in the daily life we are trying to help out the family and especially Shymo as much as possible. Sometimes only walking the dog could be of great help when the whole family has moved to the hospital to be there for Shymo.”

Unfortunately, Shymo’s situation at the moment is not as positive as she is herself. “What I find the most difficult thing to accept as a mother and a mother-in-law, is that Siem and Shymo are turning into adults so quickly this way. There are so many moments when I’m thinking: guys, you should be at a festival right now. But at the same time, I can see that they are so incredibly happy at the moment and in their own way they’re making a festival out of life. Only in a different version than most youth nowadays, for example in the shape of a cup of coffee at Aloha (Shymo’s favourite beach restaurant), or a glass of lemonade on the balcony.”

This active Sunday afternoon we can frankly call a successful Sunday afternoon, for Shymo as well as for her family and friends. “For now it is really waiting for any news from America”, Shymo explains. “For everyone, to be honest. As soon as we are getting a green light, I am heading off to Washington. Every month, where I will get four pills everytime I come there. That is one for every week. ” When the bootcamp ended, there was waiting a heart-whole surprise for all participants. Jolanda van der Meulen made, together with her kids, the first original MOdailles from 3960 beads, 72 rings and 72 little buddhas. Shymo took the first, because of course she can call herself the winner of the day. Or actually the winner of the year. Because Shymo, you are so unbelievable decisive, inspiring, beautiful and incredibly strong. If your mental strength could be turned into physical strength, you would probably be participating in the world championship boxing next year. And I think we are all perfectly sure: that stupid cancer is never going to beat your cast-iron personality.

By Fleur Grandiek

Emma's Uitleg

Emma’s explanation

Hi,

My name is Emma and I was the biology teacher of Shymo when she was a student at ‘het Zaanlands Lyceum’. In Shymo’s story you can read that the cells of Shymo’s tumor have a mutation called H3K27M. In this blog post I will explain what this means and how this mutation probably caused Shymo’s tumor.

To understand what the H3K27M mutation means, we first have to look at what a mutation is. Our bodies consist of around 37 billion cells. Each cell has a nucleus that contains DNA. Your DNA is also known as your genetic material.You got half of it from your mother and the other half from your father. The DNA from one cell can be compared to a “cookbook” because it contains the instructions, which are called genes (“recipes”), for what a cell can make (“bake”). With the instructions from one gene (“recipe”), a cell can make one protein (“dish”). Each cell in your body has the same DNA (“cookbook”), but because not every cell has the same function, different cells can use different genes (“recipes”) to make different proteins (“dishes”). When a cell does use a gene to make proteins, this gene is said to be active. When a gene is not used by the cell, it is inactive.

A mutation is a change in your DNA. A mutation is not necessarily bad, but a bad mutation can have very harmful consequences. An example: the recipe that you use to make an apple pie is probably different from the one that your neighbor uses (one recipe has mutations compared to the other recipe), but both apple pies are tasteful. But if you are going to add chili powder (a bad mutation!) the end result will probably not be as good…

The mutation that the cells from Shymo’s tumor have, is called H3K27M. Let’s find out what this means. The DNA in one cell is 2 meters long. For this to fit into the cell, the DNA is very tightly wound around little balls of protein. These protein balls are called histones. Histones consist of 4 different types of proteins and one of those is called H3. The cells of Shymo’s tumor have a mutation in the gene (“recipe”) for the H3 protein (“dish”). Cells that have this H3K27M mutation make both normal, good H3 histone proteins and mutated, bad H3 histone proteins. The bad H3 proteins do not function properly themselves and they also block the good H3 proteins from doing their job.

So what do these H3 proteins normally do? In a normal cell, histones can get certain marks. Some of these marks make the DNA wind slightly tighter around the histone balls, while other marks make the DNA wind slightly less tight. When the DNA is wound more tightly, the cell can no longer use the genes (“recipes”) on this part of the DNA (like the pages of your cookbook are stuck together). These genes will then be inactive. On parts of the DNA that wound less tightly, the genes will be more active, which results in more protein being made.

Scientists are not yet completely sure what the effect is of the H3K27M mutation. Based on their research so far, they think that the bad, mutated H3 histone proteins cannot be marked properly. They also think that the bad H3 proteins prevent the proper marking of the good H3 proteins. Without the right marks on the H3 proteins, the DNA will be less tightly wound in certain places. This causes some genes to be more active than they should be. This, in turn, can cause the cells that have the H3K27M mutation to divide more often. For each cell division, a new copy of DNA must be made, to make sure that after the cell has divided itself in two new cells, both new cells have their own copy of the DNA. While making a new DNA copy, mistakes, or mutations, can be made, just like when you make a spelling error while copying your apple pie recipe. The more a cell divides, the more mutations this cell can gain.

The H3K27M mutation was probably already present in Shymo’s cells when she was still very young, maybe even when she was still a baby (although I don’t know this for a fact). or 16 years, the cells with this mutation could have too many cell divisions, gaining more mutations each time. This way, one of the cells in Shymo’s spinal cord gathered exactly the wrong combination of mutations, that together caused this cell to become a cancer cell. When Shymo was 16, this one cell had grown to a tumor. You can read what happened next in Shymo’s story on this website.

I hope that reading this blog post helped you understand what the H3K27M mutation means. If you have any questions, please let me know!

Source of information: https://www.nature.com/articles/s41467-019-09140-x#Sec9

Mo en Evi

With Shymo to physiotherapy

Before Mo’s hospitalization a few weeks ago, I picked her up every Monday to go to physiotherapy. Physiotherapy is really important for Shymo. It’s the moment for her to have a nice workout and warm up her muscles. I often ask her if she’s excited to go and the answer is always “YES!”. Not everyone would be this excited to have a heavy workout like this, but Mo really enjoys it. Also, the fact that we go together makes it a lot more fun.

Mostly, we are in the car by 9:10 and drive to SMC Fitness in Zaandam. We always get a warm welcome, because everyone there already got to know Mo in the meantime. Mo always starts with cycling. Because Mo can’t use her legs herself, her therapist will hold them in place on the exercise bike so Mo only has to make the cycling motion. Mo told me that she loved to cycle before she became wheelchair bound, so this way she gets to experience it a bit again.

Shymo’s physiotherapist is really sweet. We couldn’t have wished for a better help for Shymo. She always does her best to make it as comfortable as possible and helps Shymo the best she can. She even put a large donation pot on the bar!

After cycling, Mo sometimes trains her arms on the fitness equipment or she goes to the treatment room. In the treatment room Mo always starts with stretch exercises for her legs. After that, it’s time to sweat. Sometimes she trains her arm muscles and her abs. The exercises Mo does are really tough. I’ve never seen anyone workout this hard!

When the physiotherapist leaves the room, Mo and I have to work together on exercises. There is an exercise where Mo sits on the bench and I put out my hands one at the time and Mo has to tap them while she stays upright. It sounds like a simple exercise, but for Mo this is really tough because it is difficult for her to keep her back straight and sit still like that. This exercise is always fun to do together, because I can really encourage her and see her winner mentality up close; she really wants to do well. Of course this exercise doesn’t always go smooth, but that is not Mo’s fault. Often it’s because I say something Mo has to laugh about and then she loses her position. The two of us always have to laugh about this.

When the physiotherapy is done, we often do something fun. Grab a lunch on the beach, get a Mcflurry at McDonald’s or eat a sandwich at the local deli. Our Monday’s are always really fun days where we can chat and laugh with each other. Not only I find it really fun to tag along, but I really like to help Mo too. I can’t cure her, but I can be there for her as a friend and support her with things as physiotherapy.

Dear Mo, I hope you’re feeling better soon so we can go to physiotherapy and do all the fun outings together. I love you.

Big kiss,
Evi

Mo en Siem blogpost

Siem: “Mo is the strongest woman that I have ever met”

I’ve been Mo’s boyfriend for a year and a bit now. A year in which a lot has happened. Having a girlfriend with a severe disease can be tough, but Mo and I are still having a wonderful time. I truly enjoy it and am learning so much from Mo’s perspective of life.

Fight, never give up and always have fun is what she taught me. It is only some of many things and I apply these lessons to my own day-to-day life. I am so happy that we are together! Shymo and I have known each other since 2015, before she got sick. rom the first time we met we already had a connection and we never lost contact. I’m glad because she is my true love and I already knew that at that point. But then Mo heard that she got sick and everything changed. This event and the loss of functions in her body was not good for her self-image. “No one will like me like this”, was her thought. It became my goal to always be there for Mo. Often people ask me: “why a girl in a wheelchair?” Because I love her, no matter what. She believes so as well and together we are capable of anything!

Our daily life changes constantly. I help Mo with her daily routine: shifting and moving her, showering, shaving her legs… you name it. Together with Ilonka (her mother), Ruud (her father), Zyara (her sister) and her brothers we are a strong team that takes care of Mo. Ruud and Ilonka took me into the family this year and treat me like one of their own. I feel at home and welcome and am really grateful for this. Together we ensure that Mo’s life is as normal as possible, she deserves this. Mo is kind, beautiful and the strongest woman that I have ever met.

Blogpost Zyara

Through the eyes of a sister

Shymo, my little sister, my friend. We would have thought that you of all people would become sick? And why you? This disease only happens to people that had a long life already, right? And how will this continue? Will my little sister always remain in a wheelchair or will you be able to walk again? These questions often go through my mind.

Mo, two and a half years ago we discovered that you are sick. It seemed so innocent but look where we are now. This is so mean and it sucks. The bond that you and I have is what all sisters should have with each other. We could do almost anything together: shopping, go out for a coffee, to the beach, festivals and parties, or sell our clothes at the vintage market; I can keep going like this for a while. I am so happy to have you as my sister. Yes, I dare to say that I cannot wish for a better sister than you!

The day that I heard you have tumor, I was in Malta. My first week out of the ten that I had to be there. My world collapsed; I wanted to go home, be there for you, join you to the hospital, watch movies together… But you told me to stay in Malta and have fun. “You went there for a reason and we can facetime every day” you said. So I stayed. You were right, but it felt weird.

I don’t say it out loud normally, but I am having a very hard time with this situation. All those setbacks every time are like being hit against the head with a frying pan. But then you, the strongest person I know, say “screw them, I am not giving up!”. And then I think “Yes, Mo does not give up! We go for it”. And that is how you drag me through all this drama.

Mo, you are the strongest person that I know. So down to earth but at the same time fully aware of what is happening and the risks that are involved. You always want to make the best out of a situation, have fun and stay positive. Because what is the added value of being sad? It won’t make you feel better. Your mindset is something that a lot of people can learn from.

Sometimes it is tough. Because I want to do stuff with and for you. But lately you are very tired and not feeling that well, which is because of the medication and treatment that you currently get. That is when I often realize that you are sicker than you actually look like. That is a compliment Mo, because even with all of this going on, you still look really good. And look at everything that you are still getting done even while you are feeling so bad. That is amazing, it really is.

The only thing that I still want to tell is that I am very proud of you, of everything that you do and how you are doing it. You are an amazing person.

I love you.

Lots of love,
Zyaar

Shymo en Mirte

Can you imagine that you best friend suffers from cancer?

Mo asked me to write a piece about how I feel and how I experienced the past period. I will try to be as honest as possible, so you can see my experience as best friend clearly.

My name is Mirte and I’ve known Mo since third grade. We walked into the classroom, we looked at each other and I knew instantly: this is my BFF. We’ve been inseparable ever since. Unfortunately, we did get separated in the first year of high school, but she came back to my school for the second year. In the fourth year we were in the same class, finally. That was noticeable when u looked at Mo’s grades, though. She had to repeat the fourth year, when I proceeded to the fifth. This was the year Mo found out she was sick.

So, my best friend is sick. Terribly sick. This has been going on for two years, at least. At first, it was unreal for me. I mean; can you imagine that your best friend suffers from cancer? I have to admit that I still don’t realize it yet. Especially the past period was really heavy. A few weeks ago, she was hospitalized because she was in a lot of pain. They didn’t know what caused it. And what’s happening now or what the doctors can do, they don’t know either.

But how do I feel about this?

It’s hard. But I’m very down to earth and don’t realize all the stuff that is happening surrounding Mo. I’m not sure yet if I can’t or won’t realize what is actually going on. It could be that since Mo is always so down to earth about it. She was already like this before all this happened.

A while back I joined her to the hospital. The atmosphere of the Princes Maxima Centre is very pleasant, while before I actually went there people told me it can be quite an emotional rollercoaster to go there. The thing is: I don’t see Mo as ‘being sick’ or a ‘patient’ to me she is Mo, my friend. The days Mo spends in the hospital are heavy. Leaving home before 07:00 in the morning, travelling for an hour, going from appointment to appointment, lots of waiting in between and finally home around dinner. I admire her a lot.

My way of processing this is actually very stupid. Because I don’t. I just continue with what I’m doing until for example I ruin my mascara and then suddenly I have to cry a lot. Not because of the mascara (because who cares), but because something is bothering me. Sometimes I notice this through my body. I become nauseous or very tired. It takes a lot of energy to suppress all of this. As I said: very dumb and not the right way to do it, but this is how I deal with it. As I said: very dumb and not the right way to do it, but this is how I deal with it.

If there is any news, she always shares it by sending a text message. I think we both appreciate this method of communicating to talk about her and the hospital. It gives me the feeling that when we actually meet, we can talk about fun stuff. Happy to say that we still laugh a lot together.

Over the last period, news from the hospital meant bad news. When I see that a message has been sent or when I hear my mom say “Mirt, Ilonka send us a message” I know enough. Stupid right? I automatically expect the worst, while that doesn’t have to be the case at all. I can still learn a lot from Mo and her incredible positive mindset.

So, what do I feel about this? Simply said: it sucks.

Still, I truly believe that she will fully recover, with the help from all of us. I want to thank Siem for all the support that he gives to Mo (and me as well). I am so happy that he is around. Also I truly appreciate all the commitment from everybody. Bizarre but truly heartwarming.

I am so proud of my friend and I truly admire her for how she’s going through all this. So strong and such a great mindset. We can all learn a good lesson from her.

I love you Mo and remember we’re doing this, together.

Lots of love,

Mirt