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.

Shymo met het nieuwe medicijn

Shymo’s blog: eight long weeks with a terrible ending

15-07-2020

We’re in week five of the new treatment, which as planned starts every week with a blood test, measuring my weight and length. I’ve lost another 1,3kg, which is good. But unfortunately the blood test shows that my red and white blood cell values are very low. This week I’m allowed to get the medicine, but next week is still uncertain. We’ve stopped with the rheumatism medicine for now as that could be the cause of my low blood value, very annoying. Also after my meeting with the oncologist I’m getting an examination from a neurologist. Who thinks I’ve lost some strength in my right arm. Which I agree with, but on the other hand this neurologist never examined me so how reliable is this outcome then? We’re done early this time and are on our way home, we thought. In the car on the way home we realized that we had to go to the pharmacy for medicine. So that became another tour through Utrecht, whoops!

22-07-2020

With a whole list of things that are not going so well, we are on our way to the hospital. First of course we’ll have the blood test, after which we are waiting for our meeting with the oncologist. The meeting immediately turns to the epileptic seizure from last weekend. We notice a small relieve when the oncologist tells us that it could be due to the scar tissue from the radiation treatment. But when he examines my hand, he does not rule out that the tumor could have grown. We are discussing if we have to stop the treatment and get a scan immediately. Another option is to continue, which is possible since my blood values are good enough. That would mean that the MRI would be in three weeks. We choose for the latter. The epilepsy is for now under control with medication. We we’ll go for it, is what we think. We haven’t learned a lot and are taking a passive stance for now. Maybe against our gut feeling, but we keep our hopes up that the treatment works! I’ll receive this medicine for another two times before the scan. I am working so incredibly hard for my miracle, so please let it work.

29-07-2020

It will be a busy day full of meetings and new faces, because the oncologist and server of my doctors are on holiday. First the weekly blood test and the whole circus around it. The social worker comes by and finds a euro on the floor. She gives it to me with a big smile; “a lucky coin”, she says. So sweet. Maybe you wonder: why does this make you happy? But it are the small things that cheer me up. That’s why the Princess Maxima Center is not a bad place to be. After this they’ll connect my intestinal probe at the WKZ. A routine job, we thought. Not. Dad and I walk back to mom to tell her that there were some complications. The probe didn’t want to enter my intestines and curled up in my stomach, which resulted in 45 minutes of pushing, twisting and pulling, all without anesthetics. It made me go crazy. But still I did make them laugh by telling that I had chocolate for breakfast, since I could not keep anything else in. For weeks eating has not been my strongest point and that is why I need the probe. I’m also currently not capable of swallowing my pills, as it all comes back up again. Finally the probe is placed, which is great and now we can go back to the PMC.

There we check my weight. 59,7 kg finally below 60 kg again. Blood pressure, pulse and temperature are also all under control again. Then we have to wait. After one and a half hours I’ll get the treatment and meet with the (replacing) oncologist. She is full up to date, which is very nice and calming. It is decided that to increase the dose of the medicine against epilepsy, since the seizures continue. After that the dietician comes over to give an explanation and to calculate how much food my body needs. The nurse teaches us how the probe device works. Our name is Korver of course and we all want to do it ourselves, instead of getting someone over from home care. Meanwhile I’m getting the treatment and the doctors and nurses keep coming and going. At 15:30 we’re done, getting our beads for the persistent chain and are on our way home!

05-08-2020

We’re actually not aware of the schedule when we arrive at the PMC . It was simply not clear to us. All we knew was that it was going to be a very long day. Fortunately it was all in the computer at the counter. Over there they arranged that we could go straight through to get a picture taken of my stomach, to see if the probe has been placed correctly. My situation hasn’t improved a bit since the probe has been placed. It’s so busy in the hospital that we can’t sit in the waiting area. Because of that we can go straight through to the day admission, where they reserved a room for me. I’m always glad when they arrange that, because being in my wheelchair all day is very exhausting. So having a private and calm room really helps! Soon we hear from the (replacing) oncologist that the probe has been placed correctly. Good news, but on the other hand we are wondering why I still can’t eat or drink. Also I haven’t lost weight this week so half of the probe food is still too much. A mystery that the doctors will have to resolve. The MRI has been rescheduled from 15:30 to 14:00 and the time slot where I receive the medicine has been set to after the scan. Very nice! During MRI I’ve watched Shrek, got the treatment after and at 16:30 we were on our way back home, where Siem was waiting for us with dinner!

07-08-2020

We have the result of the MRI and to express it mildly, the results are bad!! What we discovered is that there is growth on the location where the epilepsy is coming from. This wasn’t a total surprise to us, since the epilepsy had been gone for a while. They also noticed growth in my back where the coordination of my arms is located. I hoped to badly that this would not be the case. You do expect it a bit, but there was a very small chance that it would be because of the uncontrolled fat. But when you get the confirmation you do feel terrible. For me this is the hardest part to deal with. I don’t want to go through life as a living torso, it’s very likely that I’ll lose all my self-esteem in that case. How far can you go right? I don’t know anymore. Something we also cannot understand is that, in my lower back, where it all started three-and-a-half years ago, also started to growing again. But this tumor was completely removed. The radiologist and the oncologist have been notified and the boss of the current study will also look into it. Only while I’m typing this I realize how angry this makes me. I feel terrible. I’ve been doing my best for such a long time, when will I get what I deserve? Give me bits of future.

To end this blog with a bit of positivity: the biggest tumor hasn’t grown. Still it does feel like we’re back at the start again. When will this end…

Shymo in het ziekenhuis

Shymo’s Blog: Fifteen kg extra and the new medicine

12-06-20

It was a long day full of planned, but also unplanned appointments. First thing on our list was the PICC-line. Which is necessary for the new treatment. The whole procedure took about an hour. At home I was worrying myself since the stretchmarks on my arm were very fresh and present. But fortunately it was not too bad and we even had a fun time! Next thing I had an appointment with my oncologist and the research nurse. The research nurse will guide me through the new medical scientific research. If all goes well, we will start Wednesday the 17th of June. Very exciting!

Damn, I’ve gained weight again and because of that (as the moisture keeps getting worse) other specialists are now getting involved. They think it could be due to clogged or pinched lymph nodes. Also my medication list is being examined to make sure it is not because of the medication I’m taking.

After that I had to go to the neurologist. She was very shocked from my stretch marks (compare it to war wounds) and wants to involve a Dermatologist. On the other end she is pleased about the strength in my arms and we hope that the finer movements will improve as well. We do expect that, taking into account that we still have to get rid of the moisture.

Quite often we got told that we should outsource certain tasks, since we’re doing everything ourselves. But we actually like it to do all these things ourselves, like the caretaking. But we must admit that there are some things where some help would be very welcome. So we spoke with the comfort team and the rehabilitation doctor. These ladies can for example help us with getting a hoist for at home so that multiple people can help me to move, because now my father is only capable of doing so.

To make the day even longer, in between I also had to get a picture taken from my lungs and at 16:15 was the MRI. This all in preparation of the new medicine. After the MRI we also had to get the PICC line flushed through with anticoagulant. Eventually we decided to stay for dinner in the hospital and to avoid traffic, which we did!

14-06-20

Yesterday morning I have been very dizzy multiple times and did not feel well. We put the Fitbit around my wrist and discovered quite shocked that my heartrate was 171, after which we slightly panicked and my heart rate even jumped to 189. After that the Fitbit was not able to register a pulse anymore. I was having a hard time and it was quite scary. Normally I’m quite capable of letting my body recover when something goes wrong but this time that was not the case. I was very close to passing out, but fortunately I was able to regain my control thanks to dad. After that we decided to contact the hospital and we had to come over at 21:30 for some checks. This Wednesday we’ll also start with the new medicine and therefore I was a bit frightened if we could go through with it. They took an x-ray, ECG, blood and checked all my values. Eventually the ward doctor said “go have some sleep and regarding the ECG, no news is good news. In the morning an Oncologist and assistant came by to check up on me and quite rapidly decided I could go home. Fortunately we don’t have to worry about Wednesday.

In your, carotid artery on both sides of your neck are receptors for your blood pressure. If you in an instant turn your head and you pinch that vein your body thinks your blood pressure is too high. As a result your veins open up and your body wants to lower your blood pressure. When your blood pressure eventually becomes too low you can pass out after which your body enables itself to recover/stabilize the situation. To stabilize your heart rate goes up. The thought is that this happened as I’m holding a lot of moisture in my neck. So while turning my head I’m blocking that artery. But they are not completely sure. First they though my PICC-line was too deep but fortunately that was not the case.

17-06-20

The day of the new medicine! Today the hospital day will start with taking a blood sample. After that a meeting with my oncologist and in between a quick detour to the UMC to see the dermatologist. While seeing my oncologist we get the result of the MRI. The results are as expected. Here and there some coloring and some standstill. In this case the coloring does not necessarily indicate growth, it could also be a delayed effect from the radiation treatment. My blood values are good, that means I can start with the new treatment. I’m the first person in the Netherlands who gets this medicine. Because of that a lot of people were present because also the doctors and nurses found it a big exciting. Every fifteen minutes they checked my blood pressure and temperature just to name a few. It went well and nothing unexpected happened (like an allergic reaction). That means: I’m going home!

The moisture that I wrote about earlier in the blog eventually appears to be no moisture at all. The dermatologist discovered that it’s actually uncontrolled fat storage. This came to light during the last MRI. It’s probably because of the high dosage of Dexamethasone, Prednisone and Hydrocortisone. I’m very disappointed by this. Since corona started I’ve gained more than 10 kg and it is also bothering me very much. At one point in time I gained 1 kg in five days. It especially hurts due to the pressure on my body as well as the ripping of my skin. The stretchmarks became unimaginably big and will not go away anymore. But I’m least worried about my appearance, the pain: that is the worst. And not being able to move since everything is so heavy. But, we got rid of the Dexa and Prednisone. Now it’s just a matter of time to reduce the amount of Hydrocortisone. I’m very curious if this will solve my problem, because in my current state I’m unrecognizable. Where is Shymo?

24-06-20

The second time with the IV containing the new medicine! Today would be an calm, ordinary hospital day. It eventually was, but it all took longer than expected. First we had to take a blood sample, measure and weight. I came back quite sad from that. I gained weight again… WTF! How!? Now my weight is 64,6 kg, while my normal weight is 50 kg. That means I’m holding almost 15 kg of uncontrolled fat. The oncologist picks us up and he as well is not amused. We went through the whole list of medicine again, but nothing seems to clarify. Conclusion, it should improve with this new dosage of Hydrocortisone, so we agreed that we’ll have another look next week.

On to the day admission for the IV with the new medicine. I’m glad that the blood results came back positive and fortunately I also did not have any allergic reactions or nasty side effects. It was a long day, but we had so much fun with the nurses and the assistants. That matters a lot and helps you to get through the day a lot easier! The staff of the PMC is amazing, that is certain. Now I’m awfully tired and we’re on our way home. We’re hoping for the best and that the fat will disappear soon! After all these setbacks and treatments that didn’t work we are hoping that this will be my miracle cure… are you hoping with me as well?

Shymo Magazine

Shymo’s blog: 20 years!

24-05-20

My birthday! And of course the birthday of my dear sister Zyara! That I’ve been born on Zyara’s birthday continues to amaze people haha, which I totally get! But I always enjoyed it and we always make sure to have a good time! I turned 20. That means that for already three and a half years I have been fighting and enjoying (as far that is possible). You might wonder how we were able to celebrate. Well, we came up with a great solution: open the front door and place a wall of Plexiglas (thank to dad and Elsa). That enabled us to sit on both sides and chat. And outside we decorated the surrounding with balloons and other decorations. People came in small groups and it was amazing. Mam was spoiling us with her amazing cooking skills and made mini pizza’s, pastries, and many more delicious goodies! We also had two amazing cakes from Brakenhoff and a friend made some brilliant cupcakes. Also with present I have been spoiled. From my friends I got a SHYMO magazine, with fun memories and stories, so well thought of. Furthermore I got jewelry, clothes, flowers, gift cards and many more things. Because of all that I accidentally sat in front of the Plexiglas in my chair from 11:00 till 20:00 and I was dead tired after that. But the day in advance already I said: it’s going to be worth it. Going for one day of full tiredness did make me get everything out of that day, and it was amazing! I could not have been happier.

The week in advance I was already very excited about my birthday, but of course the evening before my birthday at 21:30 the situation got out of hand again… Why does this always happen in the evening? And exactly during Pentecost weekend. Every time it goes like this. But, to give a quick summary: there is a hump beneath my scar from the biopsy. It could be brain fluid and that is super dangerous. But if it is not growing and my temperature remains the same it can wait a bit. This week the surgeon will have a look at it. So that was a big mood changer for us and they even mentioned that I might be hospitalized. We were sitting ready on the couch all evening. Then in the morning I also did not fit in any of my clothes anymore so the day was already ruined for me (and we did not even start yet).

But fortunately that was not for long, the people who came by cheered me up completely! I don’t know how they did, but within a few minutes I was back to being myself and had an amazing birthday! I am so grateful to everybody and so happy with the people around me, unimaginable.

27-05-20

They did an echo and felt and looked at my hump. It’s moisture, but they can’t tell what kind of moisture. They don’t expect it to be blood or an infections since I’m feeling ‘well’. It could be brain fluid or another moisture but because it’s not changing in size or position there is no need to remove it. As long as it remains like this and I feel alright the body should clean it up by itself. Opening it up brings more risk than letting it heal (remember my bed soars? Yes, after a year they’re still there). At the next MRI scan they want to give it some extra attention.

29-05-20

Since a couple of days it seems like I’m getting some strength in my abs back. So I hope I can do some exercise soon. With exercise you can think of that I want to eat at the dinner table three times a day. That stimulates a lot of muscles and you have to start somewhere right? That strength in my muscles is coming back could be due to the reduced amount of prednisone. That is finally possible since I’m using rheumatism medicine. The pain from the rheumatism is not there the whole time, it comes and it goes in waves. The pain that I currently have is mostly from the moisture and sore muscles, which is increasing as I’m getting some feeling back. My arm is still lacking behind, but even there some strength is coming back. Because of the moisture my skin is literally ripping apart and everything hurts. The stretch marks are now over 10cm long and more than 2cm wide (and it keeps getting worse). One improvement is that I haven’t had anything epileptic related for a while.

Something that is really nice, is that Siem probably goes into quarantine! “Huh is that fun?”, yes, because if Siem does not have Corona he can come live here with me and we can be around each other. Do realize that we have been separated for three months. And more than half of the time a windows has been between us. I am really looking forward to it, but I do realize it won’t be easy for Siem to go from a life outside to a life of quarantine. I got used to being home for weeks or even months straight, especially during the times that I felt bad. But for Siem and most people having a busy life and traveling around is their normal routine, so that is something to get used to! But still I am looking forward to it. Even if it’s just watching a movie together, that is more fun than watching it on your own. Although, I’m never really alone but that is also something you get used to.

Friday we’ll go to the PMC again for a checkup and meeting. Then we hope to hear about a plan for the future, as the radiation treatment is finished! We’ll see.

Na het bestralen

Shymo’s Blog: My month May

04-05-20

Today we had quite some appointments at the UMC. For an intake, CT-scan, to make a radiation mask and for a meeting with the radiotherapist. It went swiftly and smooth. The waiting time was minimal, very nice! We were even done an hour earlier than scheduled. That has not always been the case haha (five hours láter…).

Thursday morning two ladies of MoveHS will come over to see if they can arrange a nice wig for me. Thursday afternoon I’ll start with my radiation treatment. It coming period will be difficult but I’m entering it with full courage! My hair loss will be upwards from my temples, so the possibility that I can cover the bold spots with my own hair is very small.

07-05-20

Well everybody that was quite a strange experience! Two lovely ladies from MoveHS came over for a window visit with three beautiful wigs. Mama and Zyara watched when they came out of the boxes and immediately fell in love! They look very realistic and you could see the difference compared to fake hair immediately. After fitting, measuring and a lot of looking to myself we came to the conclusion that wig number one was the absolute best, wig two was too small and wig number three did not fit nicely. It is a tiny bit darker than my original hair color but I am very pleased.

It was really bizarre how this all went, because I expected five sessions of crying and eventually ending up without a wig. I was quite scared towards this appointment. Because it is quite a big step. Not everybody just loses their hair one day and especially for women it is very characteristic as it defines a big part of how you look. Also not everybody has been sympathetic about this and you notice that as people do not take into account how emotional this can be.

The ladies of MoveHS have shown me a completely other side during the fitting. Even better: they made it fun. From the first minute that they were in front of the window I already liked them and they gave me the feeling that it will turn out well. They are the greatest team together and are open to a lot of options. They even offered to come back on Saturday as they did not want to make me too tired. Because I still had my radiation treatment in Utrecht that afternoon. They will adjust the wig to make it matching to my original hair and they’ll come back with it on Saturday! Saturday they will do the last adjustments on location and voilà! This is such a relief and I had a good time as well: it was a real session amongst the girls and they were very sweet and gentle. And… as icing on the cake… They want to donate the wig, isn’t that amazing!!! I do have to process this. Wow what a day!

Radiation treatment went well today. The machine broke for a moment which caused a half an hour delay, but dad and I are always prepared so it eventually went quite smoothly. For example I always make sure that I’m not wearing anything metal and my dad and I are well prepared for the lifting on the table and that sort of stuff. Furthermore nothing strange happened and at four thirty we could drive home again. Tomorrow will be another busy day which will start with leaving the house at ten thirty, going to appointments in the PMC and after that we’ll have to go to the UMC for radiation treatment. We’ll see what happens!

08-05-20

I am no longer allowed to use my rheumatism medicine as it cannot be taken in combination with dexamethasone, so let’s hope that the pain just stays away! That is my expectation since you could sedate a horse with dexamethasone. Today I have to make a very clear message that my body is not working properly and that I do not like how things are going. The epilepsy medicine causes tiredness while the dexamethasone causes insomnia, not a good combination for the night…

It’s not easy to write this much but it helps me to process all this by writing it down and it also helps to provide myself with an overview of all the situations I’m in and to get things sorted. I want to build muscles again so badly and I do think that all the rides with the car and all the lifting sessions are a good start for it. I hope that after the radiation treatment I will regain some strength and that my stupid right arm will start to recover, because even typing this takes a lot of energy. And I still have a full day ahead.. I try to challenge myself with small things, like eating at the dinner table. I haven’t done that in ages but during corona I started with it immediately as I cannot go to physiotherapy. And I don’t want flabby legs, because I still want to look good!

It really is fingers crossed and hope that the cells of the biopsy start to grow to get an as good as possible image of the possibilities. The rehabilitation doctor and I have discussed my spasms and other things that bother us. Like how I am feeling and if transfers are really necessary. It was a nice conversation and I have done my best to explain as clearly as possible what this situation is and where I would like to see improvement. I got told that they have the utmost respect for me and how I deal with all this, because they have seen it a lot different in their line of work. This happens more often and really makes me feel good!

12-05-20

Today was a very intense day with a lot of tensions. Because, do I have to stay in the hospital? How bad is the situation? All answers that I am waiting for. We arrive in Utrecht with the three of us. Which is actually not allowed, but when I get hospitalized my mother will have to stay with me in the hospital, as always. While I’m making all the transfers with my dad, because I just don’t have enough strength. The day starts in the UMC, with radiation treatment. This appointment goes as scheduled and we’re done at ten thirty.

We drive to the PMC, but the same rule apply and you’re only allowed to enter with two persons. So my mother goes her own way and we separate. My dad and I go to the desk and are received kindly. We started with taking some blood samples, which went smoothly! After that we were picked up for a meeting with the oncologist, a new attending physician and another oncologist. This because they have let us know in advance that I might need to be hospitalized. We discussed a lot and did some tests. Fortunately there were no strange results. Only my thyroid is working a bit too quick but that can be solved quite easily.

The conclusion is that the dose of pee pill is going up and the dexamethasone will be replaced by prednisone. With that we hope to reduce the amount of moisture that I’m holding and that it will solve some of the other problems within my body. We also had an appointment with the occupational therapist and the physiotherapist. They wanted to help us, by investigating how the transfers would become less of an effort. For example with some kind of belt around my belly. But no definite decisions have been made yet. Thursday I’ll have to come back for a checkup and then we’ll see if the changes have any impact. I really hope so, because the pain, itch and tears in my skin seem to get worse. But all in all it was a pleasant and useful day.

15-05-20

Well, if it’s up to me things could go better. Fortunately the radiation treatment goes swiftly. Only three more to go and then we’re done! But I am holding almost ten(!) kg of moisture and that really sucks. Yesterday we did reduce some medication so hopefully things will improve over the weekend… Physically things are not going that well, but mentally I’m fine. Fortunately I’m not really in pain, only sore muscles in my neck and upper back but I think it’s because of the moisture, dráma.

The dexamethasone got replaced by prednisone again, because the side effects were too intense. The dose of epilepsy medicine got reduced. Because I haven’t had any epileptic seizures for the last one and a half week. We did increase the dose of pee pills with the hope of cutting the amount of moisture that I’m holding. And the ‘chemo’ that I’m using has to stop for a week. Because it could be that it reacts with a steroid and because of that I could hold fat lumps in my body. A whole list of things, but we’ll see how it goes.

Monday, Tuesday or Wednesday they will make a stomach echo for the moisture. The radiation treatment itself is not bothering me that much! I have thin mucous membranes so my cheeks and gums are on fire, but I’m used to that. That means no potato chips. And often right after the radiation treatment I have a headache, especially near my forehead/eyes but I can ignore that. Something that could be quite fun to tell is that since a few days I have been capable of squeezing my own pee out, instead of using my catheter. But all in all I’m getting through the day quite well, that is what I also told my oncologist. Only they moisture is really annoying. I really hope that the radiation treatment will fix my arm. It’s very scary with some things to not being able to trust your own body. Even if it’s just picking up a glass, I’m doing that with my left hand out of precaution.

19-05-20

I noticed that the bond that I already had with my dad has been getting even stronger over the last few weeks and I really enjoy that. He understands me so well in how I think and how I feel and even if I’m acting angry towards him he knows how to adjust to make things good again. The medication is really messing with my head, but if your body is not collaborating as well it becomes twice as heavy.

But because people on the outside are having such a hard time with corona I do have the feeling that the whole radiation treatment and everything around it is forgotten sometimes. That hurts. Also at the moment I’m in a lot of pain. Head and neck pain especially. But also pain in my stomach and an arm that’s not working (can you imagine that?). Everything is piling on top of each other.

20-05-20

Mentally I’m doing fine. I did burst into crying yesterday during the night but that had multiple reasons. The main reason is that every night that I had radiation treatment during the day I only sleep for about two hours, sometimes I have weird dreams as well which make me panic and at this moment I’m not capable of doing anything myself so I have to ask everything. Since the 11th of May I only noticed the smell of epilepsy once, so that is a good thing. My arm is still lacking behind. My body is literally tearing apart and everything hurts. I still can’t lift myself and I can go on like that, so my dad has to help with everything. To summarize: physically everything sucks, but we are working on making things better!

I did notice that a lot of opinions have been formed about how I should loosen my quarantine restrictions. The biggest problem is that my paraplegia comes to my waist and because of that I (already) have problems breathing. So if I get corona and it gets to my lungs it could be life threatening. And if that happens you’ll regret it!!

I am missing Siem a lot. Twice a week he shows up in front of the window but that is getting harder as we really want to cuddle. Or at least sitting next to each other, haha. We are facetiming frequently but everything is just a bit weird. I know he’s having a very hard time with it but I wouldn’t know how to make it better, more fun or even easier for him… I am taking about forty pills a day so my head is not working that well all the time and to be honest I am thinking a bit more about myself these last few days. Which is not always fair towards Siem. These times are just not easy for me, if you can only imagine how much effort it already takes me to get in a car.

Shymo en Otis

Shymo’s Blog: Unpredictable Time

20-03-20

Today we have been to the PMC It was unexpectedly quiet but we were received with open arms. I gave quite an amount of blood for a scientific research. The objective is to investigate which substances active the infections within my body, for example the one that I had in my esophagus last December. Through this they try to get rid of the prednisone and get me a replacing medicine. There is the possibility that the infections can influence the tumor and we don’t want that of course.

03-04-20

We’re back from the hospital. Now we have to wait until they have taken a look at the blood for the inflammatory values and sediment. The current target is to figure out where the moisture and pain are coming from. We need to find a balance between the prednisone and pain, to eventually start with a medicine that replaces the prednisone. We have to get rid of the prednisone, because the longer you use it, the more side effect and the longer it takes to stop with its usage. We have not received any update about the biopsy yet.

The sediment and inflammatory values are down: so we reduce the amount of prednisone. If it stays like this and the pain won’t increase we can look into switching to hydrocortisone and if we can reduce the amount of prednisone even further.

06-04-20

Since Saturday afternoon the pain started to increase and I’m holding an incredible amount of moisture. So much that my skin starts to rip, resulting in large stretch marks as big as two by ten cm. I have to report at the hospital on the 8th of April at ten o’clock, then they’ll make an echo from my shoulder and I’ll have to give blood again.

08-04-20

It seems I have a condition known as Polymyalgia Rheumatica (PMR) and came from one of the treatments that I had before. This has been discovered through the medication that I’m currently using. It is a type of (muscle)rheumatism that normally occurs at people that are over fifty years old and it affects the muscles in the shoulders, neck and the pelvis. They want to treat this through medication which I’ll have to take once a week as a shot, just like the fragmin that I take. It should work after about a week and until that time I’ll have to take my normal amount of prednisone. PMR normally reacts the best on prednisone, but that is not an option due to the side effects.

12-04-20

Yesterday I did not have a nice evening. We were planning to eat sushi and my sister and mother were busy in the kitchen. Suddenly I don’t feel well and my sister calls at my mom that it’s not going well. I tried to explain that I got nauseous and was smelling a terrible smell. I went outside to lay in the sun and get some fresh air and fell into a deep sleep. Meanwhile my parents were investigating the symptoms and it could have been epilepsy. I woke up, took a shower and almost immediately went to bed and continued to sleep. BUMMER!

13-04-20

There has been contact with our oncologist and he is quite certain that it had been an epileptic seizure. Meanwhile there also has been contact with the neurologist. In the afternoon a courier will deliver medication against epilepsy. At the next scan we shall see if the tumor is growing and this will be just another thing that I’ll have as well.

17-04-20

Today we have been to the hospital and we spoke with the oncologist. He thinks that the epilepsy has been around for a while but at a much lower level, it’s connect to that I’m sleeping bad and short as well as that I’m confused sometimes and tired. Monday we’ll discuss the possibilities and results of the biopsy. Friday there will be an MRI to see where we are and if there is anything new. If the MRI shows that the tumor in my head has been growing, they want to start with radiation treatment over there as well. That part has never been radiated before and if located quite high in my brain. We’re reducing the amount of prednisone. The research from the neurologist suggests that there is some loss of power in my right arm. For now I’ll have to continue with the medication against rheumatism and epilepsy.

22-04-20

Yesterday we received a phone call and instead of Friday I had to take the scan today. Also the normal checkups have been done today. Hopefully we’ll get both the scan and blood results by Friday. Meanwhile the results of the biopsy start to trickle in.

The case is that one of the three mutations that I had is not within the biopsy anymore. The doctors are surprised but they think it is because of one of the other treatments that I had before (this was the easiest one of the three). There are two mutations which seem to have changed for a bit and my oncologist insists on treating them. The course that my oncologist has set is not easy and quite complex. The biopsy is on culture and that takes time.

All around the world I have been discusses and many have responded positive about the mutations in the H3K27 tumor. They call it a miracle that I’m still here. I am ‘all over’ on the agenda and that is good! The annoying thing is that I just don’t feel well. The moisture hurts terribly, the tiredness takes a lot of mee and it just doesn’t feel right in my head. Hopefully we’ll receive the MRI results on Friday. The expectation is minor growth, based on the epilepsy.

But for now we received a glimmer of hope and that is just what we needed!

24-04-20

As expected the oncologist called today. From the conversation it became clear that I will need radiation treatment and as soon as possible. The case is that all of my tumor have partially grown. We don’t know by how much. It is very likely that the loss of power as well as the tiredness are the result of this. This sucks!

28-04-20

An emotional day! We have send the doctor an e-mail again because the amount of muscle strain increased, the amount of power in my right arm became less again and I suffered a couple of times from epilepsy. The epilepsy exposes itself by giving me a sick feeling in general, smelling a weird chemical odor and suffering from pain in my head and neck.

The answer on our e-mail is not what we wanted to hear. Dexamethasone has been added to the list of medicine that I have to take. Fortunately that is instead of prednisone. But actually both of them are dickheads regarding their side effects: holding moisture, varying emotions and complications in the muscles.

Today, just like earlier this week, we discussed the topic ‘wig’. I will start with radiation treatment soon, where they will treat my head as well and they are not sure yet how much hair will disappear. We do know that we cannot solve it with my own hair anymore and that is quite a bummer. My mother took the task of to contact companies that sell wigs. But of course these companies are shut because of the coronavirus.

But even in this situation my mom did succeed to find a company. She spoke with a very kind woman on the phone who would love to help, thinks with us and came with solutions. She also e-mail some pictures of the hair and how it would look like. After a good conversation this lady will come over next week and we will fit some wigs in a safe manner. She will come to our front yard and will provide us with instructions in front of the window while inside we will fit them. Exciting!

Meanwhile the pharmacy is in front of the door with the dexamethasone, which will replace the prednisone. I’ve been taking the prednisone much longer than desired and time is finally there to say goodbye to the bastard. For a little while I’ll have to take the dexamethasone but after that hopefully no ‘sones’ for a very long time!

See you soon in another blog!

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…

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.