Quarantaine foto

Shymo’s blog: Quarantine

13-03-20

Today was fine, everything went smooth. They still don’t know why I have this pain in my upper back and shoulders, because of that I had to take a combination of 80mg of prednisone and diazepam over the weekend. It works as a muscle relaxant and if it works you know it’s muscle strain. If this doesn’t work they might try another treatment, which might work. That could mean that the pain comes from the tumor or possibly from the infection located close by. The stitches have been removed from the puncture wound and looks all good so that is great.

Yesterday I received a Pico pump for my bed sore and burn. It creates a vacuum and improves the blood circulation! It will stay on for a week and means I don’t have to change band aids every day which is nice. It is very time consuming, about an hour. Next week we’ll see if it works and if so I’ll have to use it for three or four weeks. The healing is just taking far too long and I won’t curse anyone with this. It would be so nice if the healing goes quicker. I do have my expectations.

18-03-20

It is the 18th of March and we just listened to the press conference of the government. Obviously it scared us and we decided to go into self-quarantine with the four of us. Mam, dad, Zyara and myself. This to provide maximum protection for me. Also for the rest of the family of course, because I do need care around the clock and the person that takes care of me needs to be healthy. Almost everyday something happens, either crazy, funny or very kind. Like a kind neighbor who bring chocolate eggs for Easter to the front door (we are currently drowning in chocolate eggs); a friend who bring over a bunch of tulips; the baker who brings another pie; and a moment later a full grocery bag has been dropped at the front door. And yes, at some point we were out of toilet paper. Fortunately our neighbor came over to the front door again, this time with much appreciated toilet paper. Now there’s beautiful tulips everywhere in the house and since they’re my favorite flowers that makes me very happy!

From a lot of people I get multiple questions. “How are you coping with the Corona virus?”, “Are you not going crazy by being inside all day?” But it’s not that difficult for me. That is because it happens frequently that I’m inside for two weeks. The only difference is that I’m no living together with mom, dad and my sister. Which I don’t mind at all, because we’re in this together and are coping with each other. We live together and not along each other. The situation is calm and every day we think of something fun to do. Even if it’s just things like baking a cake, watching a movie or even having a nice chat with each other. Also I got used to being hospitalized. I think it’s comparable with the current situation since in the hospital I was in bed all day and the only person being on my side was my mother.
Don’t worry about me. I’m not going out and don’t intend to anytime soon. But it would be lovely if the sun comes out so my body can get some vitamins.

After the surgery when I went home if felt good and barely had any pain. Unfortunately the pain got worse and worse as I mentioned. Eventually sleeping on the couch downstairs was the only option left. As soon as lay down on my back or made any type of movement I burst out in tears and that went on for days. They increased my dose of prednisone and I had to start with diazepam. That did not go well. I took the diazepam Friday evening and I was knocked out until Saturday evening. As my dad says: “Diazepam make you feel well, but it also puts you like a dead horse in a wheelchair”, haha. After that I stopped taking it. At the moment I’m also not taking any medication against the tumors and that doesn’t feel good. Because no one knows when they’ll start growing again and how rapid…

The whole weekend I felt terrible but since Monday I start to feel better day by day. And why? No idea. The amount of prednisone got reduced by a bit and the pain is slowly reducing. Which is good. It is unbearable to lay on the couch with pain in your back all day. For the coming three to four weeks I have this vacuum pump on the wounds on my back and I am very curious about the result. It would make such a difference if these wounds are finally closed! I already have them for ages and it’s about time that my body can start using its energy for other things.

20-03-20

Today we went to the PMC. It was so quiet because of the coronavirus, but we were received with open arms. Due to safety I could only bring one person to the hospital. In this case it was with my father. Today I gave a lot of blood for research. They’ll investigate which substances react with my infections. Think about the gullet infection that I had in December. This way they’ll try to replace the prednisone in order to reduce the infections. There is the possibility that the infections are influencing the tumor. It could be the case since I am not showing any signs of further neurological decay.

The next steps for now would be to reduce the amount of prednisone and if everything goes well, start with my treatment again on Friday. They want to investigate what the reaction will be on my infections and inflammatory values while we reduce the amount of prednisone. If nothing comes out of the test than I’ll give new blood to start another investigation.

26-03-20

Yesterday we replaced the Pico pump and had a look at the wounds, it didn’t make me happy. The wounds reduced in size but there is still an infection. Maybe my expectations were a bit high. I expected a nice pink wound and not a red and bloody one. We put on another pump, we’ll remove that one in a week to have another look. I do hope it will improve and that I can feel relieved again.

I do want to let you know that I am always been taking care of very well. Especially now, during quarantine. The situation changed a bit, but here at home I’m never forgotten, never. The worst that can happen to me is that someone can’t hear me or that I’m not getting a snack. Well boo-hoo that is so sad, haha. And even that doesn’t happen because I’m still on prednisone and believe me: it makes you hungry. Prednisone is weird and I noticed that it doesn’t just messes with your appetite it also messes with your head. One time I was at a restaurant with Siem and we just ordered. The only thing at the table was a bowl of sugar cubes and I really have to stop myself from eating it. While I was not even up for eating that! Your brain is sending these constant signals that you have to eat and that is really weird. The internet also says “don’t get tempted”. Haha, well I need some extra weight so I’ll continue eating!

Siem, Mirte and Jip came by peaking through the window. They sat outside with coffee and I was inside. We could chat through Facetime and that was really nice! I’m so lucky with the people around me and I really appreciate it. I wouldn’t know how I otherwise would have developed as a person. I fear that it would have been a lot harder than the current situation.

27-03-20

All week the sun was out! You couldn’t make me happier. I roll to the balcony and look for a spot without wind. Lovely. Amazing what a bit of vitamin D can do to your body. When I’m inside and it’s raining I always have the feeling that I have to do something, but when the sun is out I can just lay down while it feels useful, haha. I get a tan quite quickly so this pale ghost is gone. If the sun stays out for a while you won’t recognize me anymore.

It is a bit of a pity that the results of the hospital are not back yet. This will take a lot longer because of the corona virus. I try to keep faith and enjoy the days as much as possible. The pain is now bearable. I hope it stays like that while we reduce the dose of prednisone and hopefully I’ll lose of lot of moisture the coming days. Because that is really bugging me at the moment. This time it’s all around my core and face. When I look into the mirror I don’t recognize myself, my face is so swollen. It also really hurts and limits me in doing things. This is not what I look like and I know at some point it will return to normal. I just keep that in mind to help me through these days.

28-03-20

Everyday I’m looking for recipes on the internet so my mother can test these with her oh so amazing cooking skills. Maybe I can convince here while we’re in quarantine to write a cookbook, haha. That would be amazing.

One day when I was hospitalized in December a very kind crafting lady came by. She asked if I would like to craft something with her. We went through the things that she made and I chose to do some embroidery with an embroidery hoop. I liked this so much! Immediately after I looked on the internet for what I needed and ordered it. So now I can work on punch needling while I’m at home which is a lot of fun. No idea if I’m good at it but practice makes perfect. That’s how I’ll creatively get through my days!

Shymo voor haar Biopt

Shymo’s blog: Biopsy

02-03-20

I’m in bed at the hospital again, because tomorrow I will undergo a biopsy. They will make a small incision where my scar is located and from there they will remove three pieces of the tumor, about the same size as a rice grain. There’s always risks involved. For example, a bleeding could occur, but also brain fluid could leak or I could get meningitis. And don’t forget that my wounds could become infected. That is why I’m already (it’s Monday) in the hospital, they’ll give me antibiotics out of precaution to avoid certain infections and bacteria. But I’m not nervous at all. Weird right? The neurosurgeon has my complete confidence and therefore have nothing to fear. I do really hope that it doesn’t give me too much pain and that I can go home two days later. But that is not my expectation. I do think that this could take the whole week. There’s also a lot of question marks. Will it hurt? When do I need an indwelling catheter? Do I need a probe? Ah well, we’ll see. As I said, I do believe it will turn out well. This neurosurgeon worked together with the surgeon who did my surgery in 2017 at the VUmc. Now I’m very tired and will try to sleep. Tomorrow the alarm goes at 07:00 and after that you’ll hear from me how it went!

03-03-20

The biopsy! Despite that my oncologist won’t be there for two weeks, he did manage to plan the biopsy with his colleagues. When we went to the hospital on Friday the 28th of February for our meeting with the neurosurgeon and oncologist it became clear that it would not be just a simple biopsy, but a full surgery instead. Today the third of March it’s happening. Yesterday I was taken in already to start with antibiotics and today at 08:00 I would be the first one in line. With some delay they brought me in my bed to the surgery room, through the beautifully colored bridge from the PMC to the WKZ hospital. When we arrived there mom had to put on a beautiful overall with everything on it. We had to take a picture of that! They had to go through a few more things and then I got handed over to the surgery room. A very nice team was waiting for me and started to chat almost immediately. The anesthesiologist asked what I like to do, to which I was not prepared so my answer was: “hmm what do I like to do?”. Then they asked “are you watching a series?” I answered, half under anesthesia, with: Haha yes, I’m watching Grey’s Anatomy at the moment”. They all had to laugh. Because it is a very exaggerated and dramatic hospital series. “So you would like to think about Doctor McDreamy?”, they said. To which I answered a bit too loud: “Nooooooo, I have a boyfriend and HE’S Blond!” But in the meantime I was already far away in dreamland because of the anesthesia.

Eventually the surgery took two hours and soon after I heard that everything went according to plan. I was brought to the sleeping room and soon after mama was there as well. With my eyes still squeezed shut was the first thing I said (a bit to loud with a frowning face) to my mother was: Ah MOM! Before I forget: if I can pick a cuddle I want the crab!!!! Which made her laugh. For the rest the anesthesia did not bother me too much and I recovered soon. Soon I felt that my throat hurts because of the tube that was there, but not much later I was chewing on an ice-cream. Damn those things are good.

Soon after I was allowed to go back to my room at the PMC. Over there the neurosurgeon told me that the surgery went well. He told me that I’m an experienced patient and to me that meant that he was not worried. I had to lay on my back for two days. First this would have been my stomach to avoid that my bedsores would get worse. But then they discovered that my dad made a special pillow with hole it, so now I do everything while laying on my back. I did discover a new skill: eating while laying down. My big friend prednisone is still around, just like my appetite. When the people of the food trolly arrive I normally ask two questions: “is there salmon salad on the menu? Also mac ‘n cheese? I’ll have both!” I’ll finish it in no time with my one meter sixty length and 50kg in weight, haha. They do have nice evening snacks here as well, like a wrap on a stick with banana and chocolate. Foodwise you could say it’s going quite well.

04-03-20

My best friend Mirte and her amazing sister Fey gave me a visit in my room. Mirte is studying in Kopenhagen for half a year so it was reeeeaaaaly nice to see her again. It did suck that my surgery had to be in this week. The girl went to Malmö with her buddies and bought six!!! Backs of my favorite chips and brought them all to the Netherlands. Super funny and sweet. Every time that I now eat Swedish Cheeseballz I have to think about her. I do hope that I can visit her somewhere this year for a weekend but we’ll have to see about that.

05-03-20

This morning my visit (a group of doctors) came by and I had nothing extra to worry them about. I feel well, no complaints like fever or pain. The neurosurgeon also dropped by and checked on my wound. I’ve seen it myself through a picture as well and it all looks calm and tidy. It has to remain like that of course, that no infections rise, and that the stitches can be taken out next week. The result of the biopsy can take four to six weeks I got told and we do hope to the tumors do not grow in the meantime. Right after the check up the neurosurgeon gave me permission to go home, I immediately called dad and he’s picking us up right now! Such a nice feeling that things can go according to plan sometimes. Now I’m going home and cuddle the dogs. Buuuuut, first I’ll finish my double chocolate muffin before I get into the car.

Ziekenhuis foto Shymo

Shymo’s blog: where is my miracle?

01-02-20

There I am again in the hospital. The pain in my back is still getting worse, but I thought it were my muscles. After a while I started to consider it could be infection pain, but when do you reach a point that you go see a doctor for that? On Saturday I was not able to swallow my medication anymore. The last couple of days a pain developed in my throat and that was the moment the only solution at that point seemed to be hospitalization. Probably there is some sort of infection in my throat but we are not sure yet. A number of tests have been done and simply said: it was not nice. Almost immediately I got a drip attached, containing medication and moisture as well as lab-administration, a heart monitor and a probe. So my feeling tells me we will be here all week. Blood tests fortunately came back positive as well as the echo results of my stomach. That was where it went wrong last time. They fill me up with a little brother of morphine but it doesn’t seem to work. Actually that never seemed to have worked on me, strange right? It took a couple of days but after I made clear that I don’t want that stuff they disconnected it from me. Clonidine and the probe feeding did work. There is a presumption that a medicine that I received earlier reacts to my current treatment, but at first I was not buying that. Now that I got an explanation I do believe that this could be the case. In the meantime we found out that my inflammatory values are ok, but the sediment is not. If that doesn’t improve I will have to undergo a endoscopy: entering my throat with a little camera. This will happen under full anesthesia so no fun. Furthermore I don’t know a lot at the moment.

Since Wednesday I have improved quite a lot and that is good news of course. But I am on a high dose of prednisone (ehm… 80 mg) but I’ll have to deal with it! It make sure that the infection(?) in my throat is under control and because of that I have been stuffing my face. Swirl, grilled cheese sandwich, seabream (that’s the type of food they serve in the hospital) and you name it. Also me and my mom went for a nice stroll, after being inside for a week that feels amazing. Finally I’m allowed to go home but tomorrow I have my MRI scan so it’s better to stay a little longer. It’s really not that bad here and I’m sleeping well. Otherwise I would have been home late in the evening and would have to get up early in the morning again. I did forget to mention that they had to hook me up again to the pain medication. They removed it again because, as I said: morphine doesn’t seem to do the trick. And the probe was clogged, haha. So they took it out. In short: what a day! Tomorrow I’ll just have to get through and then I can finally sleep in my own bed. I do know a bit more at the moment, but I think we’ll get the full update somewhere next week.

Meanwhile I’m home and feeling well. This weekend I’ll take my rest and might do something fun as well, since the prednisone makes me feel good and enables me to eat! This is also very important for the wounds on my back as I haven’t had enough protein for a while and as a result the wounds dry out. Now we’ll just have to wait for the scan results but we don’t expect to hear anything until next week.

I have the results of the scan. Take your time for this because it’s complicated. There is no clarity. None at all. In fact; you speculate a lot and eventually you receive a result that you could not have imagined on your own. It does not make us happy at all. Our expectation was that nothing changed, as I have not noticed any neurological changes in my body. Neither did the people around me. I felt fine when I left the hospital, as the infections seemed to be gone. On Monday we received ‘sort of’ (how do you call it? Because even that was not certain) result of my brain. They told us: the tumor in your large brain has grown a bit, the tumor in your small brain remained stable and the tumor in your brain stem has shrunk a bit. You can probably imagine that you have no idea what to do with that information. Is it good? Is it bad? And what are the tumors in my back doing? There are a lot of questions and we do hope to get more answers on Tuesday. The tumor in the large brain did not get any radiation treatment, which could be the reason that it grew.

Then it’s Tuesday and you’re waiting all day for the results. The spine. Nothing would have happened there right? We didn’t notice any change and the scan should confirm that. But no. That is not the case. They have spotted activity in two spots of my spine. Activity is never a good thing. For now we don’t know if this is bad or very bad and what the next step will be, we’ll hear that on Friday. So much can happen. New treatment? Continue with the current treatment? Radiation? A biopsy? No one knows. But time is ticking.

14-02-20

I was at the hospital yesterday and as expected the news was bad. But you do have the right to know. “we can’t cure Shymo”; keeps buzzing through my head. My answer to that was: “not at this moment”. I continue to comfort myself with the knowledge that everyday new medication can become available and that “giving up” is not in my dictionary. My oncologist calls me a fighter and I can’t deny that. I will fight till the very last day and never give up. Pushing through is the only thing that matters. Hearing time after time that I cannot be cured is the hardest thing that has ever been said to me. Getting the diagnose cancer is nothing compared to it. “and we are not talking about a month” Dude, I’m 19!!! My life has just begun and I don’t intend to leave anytime soon. I am so angry. But in general at this moment the feeling that I have is: confused.

“Think of your quality of life”, I got told. I don’t want to think about my quality of life, I don’t want to feel well for just a month. Life itself IS THE quality and I don’t want to be without. As I always mention: I’d rather feel terrible for a long time and well for the rest of my life, instead of benefitting of it just now. Fuck off.

The last couple of days we were hoping for more insight and advise from doctors and also expected it, I think. There are no new insights. Actually we are three years back in time. At this moment there is yet again no treatment that can cure me. We, the family, feel terrible, nauseous and a bit beaten. But wait a minute: don’t interpret this the wrong way. We are far from beaten.

The current treatment has stopped, because it doesn’t work. Next week we’ll start with another type of medicine. Originally I would take this medicine during my previous treatment, but the combination would be too toxic. A meeting will be scheduled with a neurosurgeon. The neurosurgeon will, after we received a lot of information, take a biopsy from the tumor in my spine to investigate if the tumor has mutated again. The test will take four weeks, but it could take longer before we get the final result. I will be hospitalized for a couple of days. For now this is the plan.

We did receive a nostril spray that has to be used in case of an epileptic seizure. This could happen when the tumor in my head continues to grow. Fortunately I never had this, but the probability is increasing and that is frightening. We are dependent on a miracle.

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!

feestdagen 2019

Shymo’s Blog: Holiday Season

27-12-2019

The past five to six weeks I felt terrible. Surely because of the hospitalization, but it was already from before and even after it lasted for a while. When I came home I had to start with the treatment immediately, in fact; I already started with it while I was in the hospital. So my body did not really got the time to recover and because of that kept feeling terrible. It felt weird; getting fired from the hospital but not feeling well yet.

Fortunately there was a break of two weeks after two weeks of treatment (which was quite a rough period). I look forward to the break of the treatment in my odd manner; on Monday I give myself the thought that on Friday I’ll be halfway already, so it should not take that long anymore! You get it? If you don’t I don’t blame you, haha.

If my platelets have a value of below ten, I would get a blood transfusion. Well, yes and no because my body should be capable of making platelets by itself. The value was five (How?!). So they gave me a platelets through a transfusion and after that I felt a lot better. I’m eating well and gaining weight. Which is good, because I obviously lost a lot of weight during all of this. But after rain comes sunshine right? And in the Netherlands it rains a lot, just like it rains a lot at me. I have to push through but I’m sure that the good days are coming.

Since I left the hospital, I also started with physiotherapy again. It is very important to keep my stamina up and my muscles flexible. For now this happens at home because I don’t have a lot of energy but that doesn’t matter. The girls always come up with something that I am capable of doing at that moment.

Christmas went well for me. Fortunately! Because Christmas really is my favorite time of the year. We ate together, everyone got presents and the atmosphere was perfect. I have spend my time during the holiday season well and I have been doing activities for the whole week, but not every day of course. It started with a stroll through the woods with Siem (ending with a ‘broodje kroket’), the day after we celebrated sintchristmas (when you celebrate Saint Nicholas and Christmas on the same day) at Siem’s mother, we also had tea with Siem’s dad and during the holiday we also went to the beach with Gylian and Charlotte. I’ve also spend new year’s eve with friends and Siem, playing games and eating together. Lots of time spend with Siem, but I cant get enough of that, haha! But the best part was Christmas at home. We were with the whole group, so we were with ten people. We pulled straws and had a very intense shuffle competition. With that comes prices (even though it is taken into account who picks what price, is that a Korver thing?). My brother and my mother are brilliant in the kitchen so we had a very extensive meal and it was delicious. Think of things like steak tartar, seabass and cookie pudding. Amazing!! This was also the last time that I could stuff my face because the treatment had to start again.

14-01-20

I just finished my two weeks of treatment. This time it was a bit easier. But I did get nauseous everyday and threw up about 1 – 3 times on a daily basis, fortunately it didn’t get worse. No hunger or appetite, it works well together because if you only have one of the two I becomes a lot harder. Of course I lost a lot of weight, but I’ll make sure I’ll eat plenty so I can start the next round of treatment at my best. Unfortunately losing the weight always goes quicker than gaining the weight but chips and I are good friends! The two weeks that I’m on medication you can find me mostly, going out is not really possible. That is the reason that I plan a lot for the two weeks that I’m on a break, such like Bataviastad (shopping area) with my mom and sugar aunt Yvonne and going out for dinner!

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

Shymo ECG

Shymo’s blog: two weeks in the hospital

19-11

This evening they’re going to run some blood tests on me. It is because I have been lying in bed for two days feeling terrible and I have no appetite at all. It’s not going well. My temperature is high and I’m in a lot of pain. We assume that it is because my platelets are very low. Better to get it checked, was our thought.
00:19 – my platelets are fine but the inflammation values are a bit on the high side, the rest of the results will come in on Friday. My temperature went down and I could go home, because nothing was wrong.

20-11

The decision has been made that I should be hospitalized. This sucks. The entire department is running and all kind of checks are being done. What’s going on?

21-11

For a couple of hours I’m having a high temperature and now I’ve also passed the 40 degrees. The found a bacteria in my urine and that’s why I have to take antibiotics. They are testing to see if it is a kidney pelvis infection. My blood pressure is stable, but they did hook me up to the heart monitor. I was showing signs of dehydration, that is why they gave me fluid through the IV. Also I have been very nauseous and have worked myself through multiple anti-nauseous medicines.

The doctors ran their tests. They have decided to start treating me for a kidney pelvis infection, but they also feel pressure from my stomach and therefore they decided to make an echo. If they don’t find anything strange I’ll start with probe feeding.

On the echo and the pictures you can see that my intestines are not working and that my stomach is filled with fluid. Currently my stomach is being emptied and the content looks terrible. During the echo I also puked at least 10 to 20 times. My body was a mess.

22-11

I’ve been throwing up the whole night. They think due to a burst blood vessel, but they’re also checking other causes since it’s taking such a long time. My esophagus got damaged because of all the puking, which could also be the reason why I’m throwing up blood. A moment ago they took another blood sample and a team of doctors will start making a plan. I’ve been pushing them on my platelet values to get another transfusion later today as in the evening I’m starting again with my treatment. Still I’m having a lot of pain in my esophagus.

The CT-scan, which has been done today, shows that there is a thickening of the mucous membrane in the bottom of my stomach and the connection to my upper intestine. If this is an infection can’t be said yet, but they’ve also found an E.coli bacteria for which they will start treating me as well. The doctors are still figuring out how exactly, since I’m also getting treated for my kidney pelvis infection. The treatment for my brainstem cancer will be temporarily suspended (after being discussed with my own doctor) until my body is in a stable condition again. But they will start probe feeding me today to relieve my stomach and intestines, they’ll also give me a range of vitamins. But: when can we go home?

23-11, 03:30

I’m having trouble falling asleep, but why? Pain? Not tired? Trauma from the previous hospital visit? I keep staying away and time continues to pass. I don’t mind that much for myself but I do mind for my mother, because every time I have to ask her if she can rinse my mouth or grab the nose spray, etc. After discussing I’ve got a sedative to be able to sleep, so I’m wondering what it will do to me. For the last couple of days, and even now, I was not allowed to eat or drink, which makes me feel super dehydrated. That is why I’m rinsing my mouth quite often. Oh, AND: mints work really well when you’re not allowed to eat or drink! The strawberry and breath mint were my favorites during these hydration-free days. So I’ve been sitting up straight for a good half of the night and I think it is because they’ve started too late on my probe feeding. I think that is what gave me the energy. But that is only a Korver-theory; I wouldn’t know.

Instead of regaining strength I had to take a step back today. They started to give me Kalium as well and the fever is now above 39 degrees again. Plus: they connected me to the permanent heart monitor. The problems are adding up again. The infection values are rising and so is the fever. Also this is the third time they’re giving me a different type of antibiotics. All the values are going down, minerals, salts, blood values and also my white platelet values. Today they’ll try to stabilize everything, that has the first priority. I’m entering the night with my temperature being above 40 degrees and they’re giving me extra paracetamol. What’s happening to me?

24-11

Today I started they day with a 40 degree fever. Today not a lot will happen, because it’s Sunday. They are going to check Friday’s scan again with a focus on a possible appendicitis and / or peritoneal infection, because we insisted. As always I’m being taken care of with lots of love and my family tries to get me through this as good as possible.

A appendicitis infection has been ruled out. The medication has been scaled up and I’m also getting a treatment against a yeast infection. Just a moment ago they hooked me up to a bag of thrombos for my platelets and I’m also getting an injection for the white platelets. Also a team of the IC will come by to think/ have a look with the doctors to see if they can help. Now I’m exhausted, today was the first time since a couple of days that I could have a shower and wash my hair. I’m really looking forward to have a sneaky sip of hot chocolate in a couple of days #Ihaventbeeneatingordrinkingforalmostaweek. ut I was allowed to have popsicles, so that was my breakfast, lunch and dinner!

Finally there is some clarity. The infection has spread towards my kidneys. They haven’t been able to get my salt, minerals, platelets, kalium and all the others to stabilize and if that doesn’t happen I won’t recover. Now they made a plan. In a moment I’ll be brought to the operating room in the hospital next door for a small surgery while being asleep. I’m not nervous at all, because it can’t get a lot worse than the current state I’m in. During this procedure they’ll insert a tube in one of my bigger blood vessels, where they can put medicine and other stuff through. After that the expectation is that I’ll be patched up in a couple of days.

The procedure took a lot more time than expected and of course: complications. When the tube was inserted in my neck vein it tickled my heart a bit by which my heartbeat rose to 190bpm. With shocks they tried to lower my heartbeat but it didn’t work until they gave me an injection. Because of that I had to stay longer in the recovery room. When all my values where checked over there, everything seemed to be wrong as a lot of blood values were far too low. So: that that resulted in transfusion number three for the day and multiple injections with I-have-no-idea. Now everything is being set up and they’ll give me even more different types of medicine. Unfortunately my good friend Prednisone also popped by.

25-11

My blood values are finally improving and the fever is reducing. Small steps are being made. They just made an ECG and today I’ll get a visit from the physiotherapist. A culture has been set to develop from my tongue and urine. I have blisters in my mouth, so they’ll give me something for that as well. In a moment I’ll go to the hospital next door again. They’ll insert a probe which will reach below my stomach. Slowly they start probe feeding me again but also medication will have more impact that way. The stomach probe will remain, so that will be tight. Two probes in one nostril. The joke of the week was then of course: that’s double trouble!

26-11

I slept well! No fever. The surgeon came by at 08:00, nice and early. We’ll have to treat the wound on my back a bit different for the time being. All the checkups have been done and the doctors are pleased! It’s going well and the blood values look good. The amount of probe feeding will be increased and then during the week I can slowly start to eat and drink again. Unfortunately, I’m not allowed to order a big-mac menu, just yet, said the doctor. ell, If I could pick what I would eat first it would be a simple sandwich. McDonald’s; for now no thanks. If I start with that I’ll have to go straight back to the hospital, haha.

27-11

The oncologist came by and told me that I would have to regain more strength before I can start with the treatment on Monday. The coming days the emphasis will be on regaining my strength. In a moment I’ll have a cup of soup! he doctors said that on Friday he’ll look into when he’s going to fire me from the hospital, to which my response was: ‘I’m my own boss!’ 😉

28-11

I’ve slept quite well but we’ve been putting quite some work in stopping my nose from bleeding. Thick clots came out. Then we decided to call in a nurse and she put in a drip of some substance. After that I fortunately fell asleep. oday a very sweet lady came by and asked me if I wanted to some ‘craft works’. Sure, why not!? So I’ve spend the day making an embroidery and I was enjoying it. Completely in my element and we had a great time! Also later on the day a nail stylist came by and asked me if I wanted my nails to get done. Sure, bring it on! That was also really nice. After that I could use a small nap, but that was allowed. Also I’ve spend quite some time with my mom to make necklaces for www.littlelovebird.nl, because bead necklaces are becoming hip again!

29-11

It seems that I can go home on Tuesday. I can have light meals (think of plain yoghurt). The blood values are looking good. Tomorrow they are taking me off the prednisone fortunately and on Monday I’ll start with the treatment again. They’re also removing the tube from my vain, but that will happen in my room. What a relieve that must be: all those tubes and probes gone.

2-12

Going home tomorrow just became uncertain. My infection values rose from 26 to 60. Everything is being checked again: urine, blood and in the afternoon they’ll make an echo of my stomach and belly. Also they want to keep me for 24 hours under surveillance after I took the medication, but I’ve explained them that side effects only start to show áfter 24 hours. Big bummer.

3-12

Today they finally removed the probes and tube, ahhh what a relief! It was more of a burden than I realized. And yessss I can finally go home! They restarted my treatment again and I’ll be back on Friday for my checkup. It was so nice to come home since my dad bought a Christmas tree!!! Cozy days here I come.

Hoe nu verder post

Shymo’s blog: what’s next

10-10-19

Tomorrow i’m going to the hospital. would finally get my new medicines, but I think I’ll have to wait for another week as my doctor did not receive all the required permissions just yet. I don’t mind, what does a week extra matter on top of all the months that I’ve been waiting. That is how long I’ve been waiting already on the medication ONC201. But it would be amazing if it works of course.

I haven’t been up for much lately. I don’t feel well and I’m not energetic at all. Simply said I have not doing anything, but that is because my body is simply not helping me out. I’m cold constantly, got pain in my body (especially my back) and there is so much fluid in my body (my left leg feels like it’s going to explode) which really hurts. Also I’m not hungry, that is because my body is so swollen. I’m terribly tired and just not feeling well. Simply said, I feel like shit and it will only get worse if nothing’s being done about it. Because of this I can’t do any fun activities during the day, as soon as I come home from the gym I have to take a nap on the couch.

What is terribly hard for my mind, is that we keep getting different signals: first we received another rejection from the US, but after that we thought we found another way and the MRI results were in our favor (it showed signs of shrinkage and stability), after that we got rejected again and the decision was made to start with another treatment. This gave me such an overload of emotions that at some point I really didn’t know how to cope with it anymore.

You haven’t heard from me for a while and that has its reasons. One of them is that I have been so tired that I just didn’t have the energy to deal with the world outside. Also I simply did not know what to write about or what you would like to read about. Stupid right? Currently I’m doing a lot of things at which you don’t have to think, like watching a series or stringing beads for the new necklaces that will appear on LittleLoveBird.nl. And even after that I have to take a nap to get through the day. But there is a slight victory today; the smallest bedsore finally closed up.

This weekend I did visit the girls at the IJhallen (second hand clothing fair). The were there with the 12 of them selling theirs donated clothing and all of the revenue went to Stichting Help Mo Nu!. Of course I wanted to join and help out but waking up at 05:30 was just impossible. De girls and I really enjoyed it, we had the greatest fun! I’m so lucky to have all these friends around me and that makes me very happy. I’m very grateful to all the people around me, that support and love me.

17-10-19

Tomorrow, if all goes well, I’ll receive my new treatment. I have to take this three times per week, two weeks in a row and then I’ll have to take two weeks of rest. After that I’ll get another medicine as well. I find it exciting but mostly I feel relieved that something’s happening, something new. It is not a nice thought that the tumors can continue to grow when there is no treatment against is. I haven’t received any treatment for quite some time, so it became time to finally get some good news. The treatment has about the same change to catch on as the ONC201 from the US and that is quite a nice thought. If this treatment becomes a success it would matter a lot. I don’t have to go all the way to the US, which for me would be quite a task. Also at this moment I don’t know what to tell people that well, because it could happen that I won’t get this treatment as well and I would make a big fool out of myself. I will wait patiently and hope to be able to tell something next week.

The last two weeks I felt weak and was not in the mood for anything. I was just sitting on the couch watching Netflix and having naps and couldn’t get myself to do stuff. would not say it was unexpected, because it has been a very busy period. I’m taking Paracetamol and Diclofenac against my backpain and it helps me a lot. I’m sleeping better and slowly start to regain energy and the spirit to do stuff again. For weeks I’ve been trying to figure out why I’m holding so much fluid in my body. First it was only my face, but now it has spread to my whole body and a fluid bubble in my left leg feels like it’s about to burst. Tuesday they discovered that I have a blood cloth in my leg muscle. When we get rid of it, the fluid will reduce as well hopefully. The fluid is quite troublesome. It hurts and that makes me grumpy. But for the rest I started to feel a bit more energetic the last couple of days, which makes me feel better.

31-10-19

Tuesday I took the last pills, for now. Currently I’m having two weeks of rest and I must say that the side effects are not that bad. Of course it’s not fun to sit on the couch for almost two weeks, have no appetite, having cramps in my stomach and simply said just not feeling well, but I did prepare myself for this mentally which does make a difference. I have to give myself a shot once a day for the blood cloth in the vein in my leg and the it looks like the fluid is reducing (finally!) and that feels very good. Bit by bit I start to become more and more of myself again and I really like that. At one point there was so much fluid that I didn’t even recognize myself and that was quite hard. It was so that I gained about 10 kilogram in weight all because of the fluid in my body. Wednesday was the first time in a few weeks that I went to the forest with Siem. It was amazing. Being out for a moment was nice, because being inside all the time is not good for my energy level, while I do need the rest sometimes.

1-11-19

Today I went to the hospital. I had to be there at eleven and hoped to be back home early, unfortunately that wasn’t the case. The results from the blood test showed that my levels were very low, so I had get a blood transfusion immediately. Before I started with taking this medicine it was told to me that this could happen, so I was mentally prepared. I’ve started to get used to all the shots and infusions so it was easy to prepare for. Finally we were able to go home at five o’clock and I was destroyed. I did get potato chips from one of the nurses (she got one for me from the food trolley) which was one of the good parts of this visit. For the rest there were no allergic reactions from the transfusion so that was all good. After the blood transfusion I started to feel better, especially in my head. I noticed that on that evening I was not as tired as I normally am. That did show that good blood values are really needed to keep the body going. The coming two weeks I’ll have no treatment and after that it’s back to business, bring it on! It is going to be intense and I have to be a bit patient because the medicine that I will get additionally has the same side effects. The biggest downside is that my blood values can go down rapidly and that could bring some quite unpleasant things along. I could get internal bleedings as well as bruises and cuts that won’t heal. But all and all I feel quite well; I just keep going as always!

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