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Shymo’s last blogpost

A last blog from Shymo written by mom together with the family.

07-03-2021

March is on its way. For coming week the agenda is filled with visits. On Sunday the grandpa and grandma from Siem will come. We are making the place cozy: extra cozy with pillows in the tent, cake… it’s like the king and queen will visit. It actually is a bit like that. Grandma’s always bring along all sorts of things, and we are impressed by everything that comes out of grandma’s little bag. Eight hyacinths, a big box of pure chocolates (my favorite kind) and a big piece of chocolate with a sweet text for me!

After the coffee, when grandma already told us a lot, it’s grandpa’s turn. Story’s about the past of course; those are the best. Grandpa told us that he stopped with school when he was thirteen years old, because he had to start working when he was fourteen. “That’s why I still write ‘duck’ with an ‘i,” he says. We are laughing out loud: literally everybody is having a blast! We really enjoyed the company. Some people give you energy, and these are two of them.

Also a lot of friends will visit this week. So much fun, but on Thursday we have to cancel due to the storm. During the night the tent in which the guests stay has been partially destroyed. Bad luck. Also I’m not feeling well this day. In the evening I have quite a fever and I’m being cooled down with cold washcloths. Fortunately the fever drops, and (much later than normally) we go to bed. The next day the Oncologist calls. We wait anxiously, with the hope that I can start with a trial. The Oncologist is working on it, but unfortunately for now no luck.

The next day my best friend Mirte comes over and as a surprise we prepared a gift for her. A while ago there was an article in the newspaper about a grandma that crochets stuffed animals for charity, so we immediately ordered a few! Also two monkeys, one for Mirt and one for me. We both have the same light blue sweater, so the monkeys also got those. Sometimes we need a bit of silliness. Meanwhile dad and Siem fixed the tent and will last for a while. I do sleep a lot currently because the tiredness is unimaginable and also the pain and itch are still there. Which makes me even more tired. The days are long and we hope to have a solution for it anytime soon.

22-03-2021

The last week went quite well (although, we think). The ‘wheelchair guy’ comes over to talk us through some changes for my wheelchair. Also some friends are coming over and we receive an enormous amount of flowers, chocolates, cookies and cakes. It makes me so happy. And I really feel special; that others care so much about me. Two girls from my friend group of eleven come up with something fun; a tasty delivery! They’re off to their kitchen and make seven dishes and baked goodies. When they’re done they get in the car and are off to bring it to their friends. How sweet is that?! At 18:15 they’re here in front of the door, smiling and proud. The last one I totally get, because they did an amazing job and I’m really enjoying it. My family is enjoying it as well as they see how happy it makes me feel.

Something really terrible for me, and my family, is that my short term memory is not working. During the period that we were writing about ‘it’s always Tuesday’ we could laugh a bit about it (Shymo’s blog: it’s always Tuesday!). Unfortunately that hasn’t been the case for a while. Before I finish my sandwich in the morning, we already discussed the day multiple times. It makes us all very sad, especially since we know that this is caused by growth of the tumor. Also the enormous amount of medication that I take is part of the cause. So when we’re off to the PMC on Friday we don’t have a lot of good news to mention. The Oncologist confirms that my condition has gotten worse over the last two weeks. It’s always such a weird experience; the moment that your Oncologist says such a thing. It feels like you’re exploding. You would like to slap the table with your hands or scream ordinarily, but we are listening to it calmly; we don’t do anything, we swallow we nod. But from the inside… man, the volcanoes in Italy and Iceland are nothing compared to it.

“Are there still thing that give you joy, Shymo?” Asks the oncologist. The feeling of suffocation gets to my mother. But I say “Yes!, almost every day I have friends or kind people visiting… I enjoy the sun when it’s there, “ I see the others smiling to I’m going on with this: “Amazing food, a pair of cold hands on my face when I’m warm, I got Siem, my family and the dogs…” Yes, the list is quite long and the oncologist is happily surprised. It doesn’t make the problem less complex. I end with: “bring it on with that new pill, sachet of stuff or whatever!” The Oncologist sighs, “I tried to get you in three trials, but no success. They do not want to cooperate. So we go home empty handed. On our way home we put on the Dutch song “utterly stupid” which for some reason cheers us a bit up again. During the weekend we are thinking a lot and we decide to have a go for ourself. We send e-mails to the US where the treatment is and to somebody who says to have made an exact replica. We’d have to pay for it and pick it up by ourselves.

Fortunately we have the foundation “Stichting Help Mo Nu!”. All the donations that we received through the enormous amount of effort from one and a half years ago; the beautiful fundraisers big and small, auctions, events, and many more initiatives, could be worth gold at this moment. With the support of everybody who helped us we have collected an incredible amount and that is something that at times like these gives a warm and safe feeling.

Since Shymo cannot use her arms and hands we have decided to take over the blog writing from her. That way the stories are still share but won’t it take too much energy from Shymo. We are doing our best to write as good and clear as possible but of course we will never be as good as the writings of Shymo.

As a team, a strong collective with all of us, we support Mo. Mo doesn’t give up and neither do we.

April is in sight and we have to confess that it’s not going well. If your legs and arms are not working and are like Shymo suffering from a high paraplegia, you do sometimes think about which other functions could disappear as well. Her short term memory is not functioning well and structuring things, or having a conversation, is frequently not going well. Shymo can’t even write the blogs by herself. Heartbreaking to deal with the fact that our beautiful little girl is sinking further and deeper away from us.

The past week was spend by Ruud, Shymo’s brothers and also her Oncologist (which we heard later), behind the computer. Looking for things that could help Mo… as time is catching up. Lots of coffee, disappointment, hope and disparity, it is an insane week. Everyone of which we have the idea “that person could help us” gets an e-mail. From the US we only get “no,” on the question if Shymo can participate in a trial. Her Oncologist already walked that road, but now we also received a rejection. It remains terribly frustrating to hear that no foreign patients are allowed to participate in a trial.

24-03-2021, 26-03-2021

Wednesday Ruud finally jumps away from his computer, a message from Germany! An Oncologist over there can get his hands on ONC201 and if we can do a videocall this Friday morning at 11:00. Uhhhh yessss, ofcourse!!! Two sleepless nights follow and Friday morning quite early we’re ready. Ruud behind the computer, Mo in bed and mom next to her. At exactly 11:00 the oncologist and his assistant call from Germany. They are nice and considerate people. First the oncologist tells about the whole history of ONC201. It’s a long story, so mom decides to file my nails. After half an hour the Oncologist is ready with his story and Mo’s nails have never been shorter. Never file nails when you’re nervous, is the lesson.

The conversation was very interesting but we just want to hear that one sentence. Ten minutes later, mom whispers in Mo’s ear, “the doctor is talking about you now.” And then finally… drum roll… “I will prescribe ONC201 to your daughter,” “You hear that Mo? You will get ONC201!!!!” The smile that this woman got on her face at that moment was golden. The emotions are high after the conversation. You see: persistence is key. The motto from Mo “I never give up”, is finally being rewarded. They day is filled with paper work, arranging the payment (we are so grateful to all our donors at this moment), all sorts of documentations gets signed and of course we share this amazing news with our own Oncologist.

27-03-2021

It’s Saturday and Mo has a reasonable day, the showering goes alright. There is still no progress in the shower unit where Shymo could shower in downstairs so that she doesn’t have to take the journey upstairs. Terrible that the authority of the county of Zaanstad, who should provide help for people with a disability, are taking months to realize something so crucial. It makes us incredibly sad and hurts us deeply to see that the liberty of washing and showered in a way that she deserves is taken away from Mo.

28-03-2021

Sunday we reach a new all time low in terms of pain. The headache is terrible and the medication against it doesn’t seem to work. We barely get through the day and in the evening we reach a new low: Mo cannot get to her words. We notice how frustrated she feels. Miserable to see for us, but even worse for Mo. On Monday we reach out to her Oncologist. Her hero, the superman without a cape… well, a white coat counts as well. It’s clear, because of the tumor growth the area swells up even worse, more Prednisone should help. It takes till Tuesday until we see some kind of improvement.

Probably already known to many, but Shymo is the queen of puns. Where she gets them from, no idea! Siem mentions to Mo that he’s going to study upstairs. “Well then, ” says Shymo. “But I can’t skip this one” says Siem unhappy. Mo smiles and says: “I know..!” And then she goes for it: It Siems like a plan, through the trees and can’t Siem the forrest, who isn’t gone is Siem. And she ends in style: Siem you later! Tears roll over our cheeks. Her hero brought her back a bit. This woman does it!

31-03-2021

We are waiting for a link in the mail. The link should provide clarity about when ONC201 will be delivered. They don’t send it before the payment is made, this should take twenty-four hours. Today the twenty-four hours have passed but we haven’t received the link yet.

01-04-2021

It’s the first of April and a sweet friend is visiting with her sister. They bring a lovely chocolate cake for Mo. After two minutes Mo already wants to lay down, she’s not doing well. So much headache. At 14:30 the physiotherapist arrives. When she’s almost done she’s struck by an insult: an epileptic seizure. The emergency medication that has to be placed inside her cheek is provided. It’s always such an awful thing to see… terrible. We try to reach contact with Mo but she is far gone. When her breathing calmed down she enters a deep sleep. Everybody is shocked. How much more does our child have to endure?

We’re checking the mail again… no link. We have set the goal to start with ONC201 before easter. When we’re busy baking pizza’s Gyl and Char arrive. They’re barely in the tent and watch helplessly how their little sister is having another insult. “The second time today,” tells Siem. The emergency medication inside her cheek comes out again. When Ruud checks her mouth, there’s also still food in it. Getting the food out, and provide the emergency medication as a spray. Ooooh, Mo always finds this so painful… but she’s not responding this time. Besides that Zyara removes the tears from Mo’s cheek in a very loving manner. The Oncologist calls us back quickly. We’re being asked if we need help and we got told that we acted in the right manner. “I’ll call you again tomorrow,” says her Oncologist. Mo falls in a deep sleep, deeper than usual. Everybody tries to eat a bit, but looking at the leftovers we see that it was not a success.

The next morning home care arrives early. The picc line needs some nurturing and the band aid on her arm needs to be replaced. We bring them up to speed, they look worried at us and sigh. “Is there anything we can do for you?” they ask. They are always so kind, but they also feel a bit defeated. They are also powerless. We would like to see this different so badly. Then the Oncologist calls. A couple of things are being discussed due to easter. Fortunately Mo is feeling a lot better today: she’s talking again, eating and makes jokes. The text “happy easter” sounds a bit.. well, far away. Still we do wish it to everyone including ourselves. Now we are only wondering if it will become happy.

02-04-2021

During the evening the pharmacy arrives from the PMC with the cassette for the pump. If things turn sour and Mo is not getting out of an insult, then the pump will be connected and will Mo enter a coma. WTF! Piss off!! Get lost, go away! Everybody is looking at each other and while I’m holding that bag in the room. Mo wakes up, sees the bag and asks: “Have Jaap and Suus brought cake again? Ahh, that’s so sweet!” We are looking at each other again and we can’t help but laugh because of this beautiful person. “No sweety this if from the pharmacy,” to which Mo responds: “Also nice!”

No one feels obliged at that moment to explain what’s actually in the bag.

03-04-2021

Saturday Mo’s BFF Mirte is coming over. Mo is still terribly tired but also very happy that her friend is always there, through thick and thin, and is coming over for a cup of tea. The bright moments are changing frequently with moments where everything is forgotten. Ten times Mo already asked who is coming while at another moment you can have a very good conversation with her. While Mirte is there Mo has her eyes shut for most of the time. If I ask if she’s asleep she responds with: “I’m hearing everything…!” Good… that’s alright, if it helps to have your eyes shut you should do that. After an hour Mirt is leaving. After the ‘lunch-hour-ritual’ Mo is having a nap. While doing the dishes, I hear she says something. Huh? Did I hear “die”?! I walk towards hear and ask: “what are you saying sweetheart?” “Mama, do you think I’ll die?” she asks.

The flames are under my armpits and I get very nauseous. I’m struggling and looking for the right words. I go sit with her and ask, “do you feel that it maybe could happen?” “I don’t know”, says Mo. “I also don’t know. It could be possible… I mean, it could be the case,” I open the conversation. To which Mo says: “yes, that is the certainty of life.” Meanwhile I am erasing a lot of sentences from my mind and it annoys me that as a mother I’m not good at this. “Well mom I’m not dying anytime soon, do not feel like it.” I give Mo a big hug and soon after she falls asleep again. I’m on my way to the toilet, getting rid of an ocean of tears.

Zyara decides that it’s time to change the mood in the house. Mo is being asked what she would like to eat, because with that amount of Prednisone you’re hungry. On such a short term it’s not easy to find something that can be delivered. Zyara start calling and at Ron’s Gastrobar it’s bingo! The kind employee on the phone says they can make it work. So tonight we’re eating out at home!!!

The food was a great success: Mo had a plate full, it took an hour but she almost finished it. She loved it. After that we watched a silly feelgood movie. Sunday it’s easter, resurrection, new start…

04-04-2021

Today the whole family is coming over for dinner in the tent. The weather is alright so we turn on the barbeque. And of course like any other year ASPERAGUS! What a celebration, Mo has been looking forward to it all day. We’re having a lot of fun and even more laughs. We do end a bit earlier than usual because Mo is very tired.

05-04-2021

Today, second easter day, Gyl is coming over to help dad in the garden. Siem has to focus on his studies and Zyara as well (the weekend was a bit too much fun). At 10:45 Mo has an epileptic seizure…. Nóóóóó, stop it! Quick emergency medication: she is restless for a moment but then falls asleep. On the ninth of April she has an MRI scan and we are curious how much the tumor has grown since she’s having more epileptic seizures. Hopefully she’ll get radiation treatment again as that always improves her condition. And let that courier hurry with the ONC201. Mo takes a few bites during lunch and goes for another nap. At 15:00 she’s enjoying her glass of lemonade. We become aware that she responds, but is not really talking herself. Do you have pain?, “no,” says Mo “not really.” “do you want anything, can we do anything for you?” Everybody is asking a couple of questions, and tells what they are doing. But then her eyes go wide open. I yell to Ruud. Epileptic seizure? I doubt. Mo falls asleep again. We find this a bit odd. When dinner is ready I say: “Mo are you waking up? Dinner is ready.” Mo sighs. “You can have dinner at a later moment sweetheart!” We’re having dinner and when we’re finished Mo’s breathing changes. Ruud calls the hospital. I also get in touch with home care, who is coming over straight away. I ask Gyl to get his brother and both sisters in law and I call Mo’s BFF. Why am I doing this? I’m expecting the worst. And it seems true, the nightmare becomes real.

At 22:35 in the presence of us all Mo passed away.

And then it became silent, the emptiness, the sadness that punched a hole in our hearts. Disbelief, we’re broken, tired, we don’t want this. It can’t be, it really can’t be possible. We need a lot of love and support and fortunately we are getting an abundance of it.

But Mo, we love you so much 🤍

Kaart Engels
Shymo en Zyara

Shymo’s blog: tiredness and setbacks

In previous blogs I mentioned that my hands and arms are not working well. That is why I do want to mention that I do this blog together with my family. Teamwork!

08-01-2021

The first days of the new year go quite well, but soon after it goes downhill. One and a half weeks ago we were allowed to lower the amount of Prednisone and since that moment I’ve been watched extra carefully. First we noticed some minor things such as a sore throat, less appetite, tiredness; those sort of things.
From the fourth of January it gets worse. On the sixth of January I can’t get out of bed anymore and I’m barely drinking anything. I’m also having immense pain and it takes us quite a long time before we discover the source. Also because I’m not talking much. Around the start of noon we contact the PMC. The feedback from the Oncologist is as follows: “three times a day tramadol and otherwise 20 milligram of Prednisone. “Fuck” we think, but we knew that Prednisone would be the emergency solution. The whole Thursday we struggle on but around dinner time realize it’s only getting worse, therefore we decide to use the Prednisone. Whining and cursing; everybody has to deal with this in their own manner. But after half an hour I’m getting color back on my face. After an hour I start to talk and within two hours I’m eating and drinking again! We last on this dose till morning, but we have to go to the PMC. I get another dose, to keep me going. With only a fifteen minute delay we manage and at 11:45 we’re in the car!

As we arrive at the PMC I’m very cold. We get a little room and I get covered in blankets. “Mo, you look like gift”, says the nurse. “Only missing a ribbon!” Haha, she doesn’t mind arranging one of those as well. A bit later we get picked up for the blood tests and to change the probe, but than the Oncologist arrives: “can you come with me?” There’s three doctors waiting for you”. We’re on our way, we change the probe at some point later. We go through it swiftly, first the Oncologist. Meanwhile dad talks with the rehabilitation doctor and the Oncologist tells us to keep using the higher dose of Prednisone for the whole weekend. Monday we’ll have a call to see how things are. After the conversations we get the probe changed. It goes smoothly and the probe is placed correctly in one go! We assumed it to be a long afternoon but it was not too bad. Mom is getting the beads for the persistence chain and we’re on our way home.

9-1-2021

It’s Saturday, that means I’ll go for a shower. Twice a week I make the intense journey upstairs. The other days I’m being washed downstairs by mom. We are already waiting for months for a shower unit so that I can shower downstairs but it’s taking such a ridiculous long time… It’s more of a burden than normally. Sometimes we abort the mission if it’s really not doable. But today I really want to go; I’m getting my shower one way or another!! The journey upstairs, including breaks, takes about twenty minutes. I can’t “just” use the stairlift without sliding off and believe me: that is very scary. So dad makes sure that his valuable package is always tied up properly. With tubes around me, lots of help and the desire to get my hair washed we succeed. Incredible, I made it! “I want an applause!!!”I yell loud. Everyone is clapping loud and silly. And as a cherry on the pie I get a standing ovation with a deep bow! The finally my hair gets washed, I’m being scrubbed, got a mask and the whole shebang. During lunch it feels like we’ve already been through a whole day. What do we care, we’re going for an afternoon nap.

The next days my brothers and sister in law come over for dinner in the tent, I always get so much joy out of that. The stove is on in the tent, so we’re comfortable and warm. When there is a lot of wind we have to speak up as the tent is making a lot of noise. At that moment it’s funny to see how everybody is yelling at each other.

I already told you multiple times that I can’t do anything with my legs anymore, but my arms got a lot worse as well and my hands are currently not able to do anything. That means that literally everything has to be done for me. When Siem is feeding my at dinner I compliment him on how well he does it. Siem is very patient and is doing a good job. I haven’t made the compliment yet or… “FLOP” Noooooo I’m covered in food!! I immediately start laughing, Siem starts laughing and because of that everybody starts laughing.

18-01-2021

Today my electric wheelchair arrives. We’re quite excited. Everything needs to be measured and adjusted to the way I want it. They’re listening well to my wishes, but I never succeeds in one go. Early in the afternoon the moment is there. When the chair arrives, driven by itself, I’m ready. “WAUW!” is my first reaction. So cool, so nice… but then I get silent for a moment. It really hits me from deep inside. The man calmly starts to explain everything. Button here, button there. A lot of information, but fortunately I’ve got my family for that. Occasionally I hear “really, can it do that as well?” or “what, is that function on it?” And then the big moment: trying it out. Dad lifts me from bed in the wheelchair and… I’m position correctly in one go! I’m smiling, dad is happy and mom and Siem get emotional. In one go!!! Normally those type of things take a lot of time until everything is sorted and therefore we are fully enjoying this moment. The man asks us several and together we arrange the final improvements. In the afternoon the physiotherapist arrives she is also admiring my new devise, which should make live and travel a lot easier. After that I took a nap before dinner.

The next day we briefly hear something about a curfew. The next day it’s a fact including some more changes. Since March last year we’re in lockdown and we’ve been following the rules ever since. But after almost after a year the little bit that we were able to do is taken away as well. We can only hope that it won’t take too long.
This whole week I’m having trouble starting the day, it probably has to do with my salt levels. I’m using two types of medication currently which are lowering my salt levels so I have to eat a lot of potato chips (which I don’t mind). As of Thursday morning I notice some improvement; everything goes smoothly. At 10:00 literally everything has been sorted. Sometimes that takes till 13:30, to give an indication.

21-01-2021

Home care is coming over today to take some blood samples. I actually have to go to the PMC tomorrow for the blood tests, but we have the feeling that it will cost too much energy. If we can save some energy by doing this from home then let’s go for it. The Oncologist does prefer to have the blood results this week, so that’s why we’re doing it like this. We decide to bring it to the hospital, then the results will be there in time. Siem is taking up on this task and drives up and down to Utrecht. The physiotherapist is taking me through a firm workout this afternoon, tired but fulfilled it brings an end to the afternoon. The next day we don’t have to go to the PMC. Fortunately, because the weather is amazing. We’re going outside for a brief moment in the new wheelchair. And I’m really enjoying it! Such an amazing feeling to have the wind in my hair and the sunshine in my face. After one and half hour we decide it’s been enough. A moment of rest and then up for a treat, because Zyara made sushi!!

22-01-2021

It’s finally spring… well, in our house! We got some tulips, amaryllis, narcissus and snowdrops. When I’m looking around from my bed or in my chair the view is amazing. These are things that really make me happy. The good thing is that we have a lot of people around us that are aware of this; creating a little happy moment.
The smile that I put on my face when a card comes in is golden according to my family. Sometimes we even receive letters from ‘secret readers’, who came across my story somewhere. I find that very special.

04-02-2021

Meanwhile it’s February, and it’s cold. When a friend comes over in the tent and we open the sliding door you can really tell the difference, despite the stove and heaters. No one stays for a very long time, but that doesn’t matter because I’m tired, very tired. I sleep a lot during the day, more than I want to. I want to do things, being a busy bee, but I just can’t bring it up. Then the days gets very intense. It starts when the mail arrives: ten cards came in for me, “whaaaat?!” Then the doorbell rings and an hour later we have three bouquets of flowers. Followed by cake, chocolate and even more flowers. During dinner the doorbell rings, “oh, that should be the pharmacy.” No, another three bouquets of tulips. Mom jumps around the house looking for vases. What’s going on…? It’s world cancer day, so it seems. It the fourth of February of course! So kind. People really sympathize with us, but today is unprecedented. Due to the lack of vases there’s even flowers in the granola jar. Lol!!

In the second week of February I have a lot of pain and an intense itch, it’s driving me mad. Dad contacts the Oncologist and there’s no other solution than increasing the dosage of Prednisone to reduce the amount of pain, itch and inflammations. Sh*t!! From this medicine I keep gaining weight and now I really want to get rid of it. The worst thing is that after a few days we discover that it didn’t give the desired effect. We struggle on. It’s also snowing this week, really a winter week as it should be. In my bed I’m being placed in front of the window: live TV! I’m laughing so much from what I see. Some parents are more excited than their children, hilarious. Cyclists who decide to walk, and cars who cannot get up the hill. Friends from ours are below the hill and are pushing the cars up. It’s really nice to watch, let Netflix be for this week! Also dogs behave differently: One really wants to play while the other looks at the owner like “ehm, can we go home (so that I can lay in my warm basked)?”. Later, when everybody got “used” to the snow, the daredevils come out. Cars with sledges at the back, someone who’s holding the back of a trailer that gets dragged along and a fan with one wheel place on top of a plastic sledge.

20-02-2021

It was a bizarre week, where I’m getting worse and worse. Wednesday I stopped eating and the days after were bad as well. That means we had to contact the Oncologist. Immediately apply 40 milligrams of Prednisone was the advice, but things didn’t improve. At 13:30 dad and Siem went to Maastricht to pick up an adjusted car for me.

The following piece has been written by my mother.

Mo was still asleep. At 16:00 Zyara suggested to put some music on to get Mo out of her bubble. She woke up and was even capable to sit straight. She have had a cup of hot chocolate milk. “We’re back” we thought. Mo wanted to eat so I started cooking, while Zyara stood at Mo’s side. Then Mo tells that she’s feeling weird and that her left eye ‘is not working’. The meal is ready but after two bites Mo has to throw up. After Zyara and I ate and things seem to have calmed down again I quickly go to the washing machine. Then Zyara yells: “Mom, it’s not going well!” I see Mo turning white and her lips start to change color; she turs ash grey. I need to make a call quickly, with shaking hands and panic in my body… “there she goes”, I’m thinking from one side. “No!” says the other side. I start to mention what I’m seeing and what Mo was suffering from and then I hear through the phone, “Ilonka this will be very hard to listen to but I think Mo’s body is giving up.” I literally shit my pants at that moment. I hear her say that she wants to come over to turn on the Morphine pump. I carry myself together and say, “No we have to keep thinking straight.” Then I tell about the eye. “Stop I got it! Give the emergency treatment for epileptic seizures” says the care worker. It’s always standing ready, but this time I didn’t make that link yet. I apply the emergency medicine and slowly Mo is coming back! God dammit what a scare, not from this world. Doing eighty things at the same time and still not having the feeling that you’re doing enough. Ruud and Siem arrive home and things calm down.

From this point I’m writing again.

Today we actually had to go to the PMC but we chose for taking blood samples from home. Dad brought my blood to Utrecht and meanwhile we already got the results. All my blood values are good, unbelievable but true. Sunday we can start reducing the amount of Prednisone and hopefully thing will remain stable for a while.

Then some amazing news about the car. I have my own Mo-bile: a car which fits the electric chair! What a joy, we are very happy with this new addition. Siem has his driver’s license for a while now but who would have imaged that I would be the first one with a car, super funny! The coming weekend the weather should be nice so we hope we can go outside with all of us.

28-02-2021

After a week of snow it suddenly became spring, free of charge. Lovely!! I am feeling not too bad and everyday I’m going outside in my new wheelchair. Today my brothers and sister in law are coming over again for dinner. Looking forward to that moment every week. And what do you think mom says! “Hey Mo, barbeque?!” That really gives me a spring feeling. Never before did we have a barbeque in February, but today we’re just doing it. Also my brothers and sister in law love the idea. We are enjoying to the fullest!!

03-03-2021

Today we went to the PMC and it’s not looking good. Unfortunately we don’t have a lot of positive news. First taking blood samples, then on our way to the Oncologist.
“So Shymo, what have you got for me today?” Asks the Oncologist. Meanwhile I see him looking left and right. He frowns (“he noticed,” I think. “yes, of course he noticed…”).
I say “yes it’s going a bit better.
“Which part is going better?” Asks the Oncologist.
“Hm, I don’t know, I’m mostly tired”, I say.
“What’s going on with your eye?”, he asks next.
“Well I’m tired so I squeeze one eye shut” I answer.
“Anything more?” I remain silent and it really hurts us when we mention that the bit of function that I had in my arm is gone.
The oncologist is not happy: “For how long?”
“a bit more than a week”.
“Mo, you know what that means?”, the Oncologist asks while I’m looking at him. “The tumor grows.” Despite that we already came to that thought it hurts when your Oncologist says it. Currently there is no treatment available and even if the new treatment gets approved this month, we don’t know if we can get it. We’re going through the list of medication to see if we can reduce/make some changes; hopefully that decreases the tiredness a bit. Also, if I continue to see double, my eye has to be covered for a couple of hours a day. And if it continues they have to be dripped in case I fall asleep and don’t fully shut my eyes.

Summarized currently it really sucks. Despite, as everybody knows, I’ll keep on going. Every day I make the most of it and I’m having a lot of fun with my family and the people that visit me. Also I’m often very tired and because of that the blogs are taking more time than I want them to take.

december maand

Shymo’s blog: my holiday month

Dear readers,

Recently it has become harder for me to write blogs. This is because I cannot use my arms and hands and it costs me a lot of energy. Sometimes I am a bit confused and haven’t got everything sorted in my mind. But besides that I do want to tell you that you should never feel a boundary to send me a message or ask me a question!

20-11-2020

We had quite a stable week without any odd things, but should be allowed sometimes, right? Also I have been spoiled a lot; Christmas came soon this year with all the lovely cards and sweet wishes. And I haven’t even started yet about the presents that I’ve received, such as plants, cake, home baked cookies, chocolate and lots of warm hats (and I probably forgot to mention some things). The amount of hats I got is due to my hair loss. This week I also had an interview with ‘het Noord-Hollands Dagblad’ about how I’m currently doing. Fortunately I had the energy for it and it all went smoothly.

I don’t have to go to the PMC this week, because we had a phone appointment. After all those times that I did not feel good enough to go to the hospital I do feel quite ok right now. Then you’ll see that this time: when I’m finally feeling quite well, we’re still not going! I find that quite sad as I see it as my ‘event’. Who would say that; the hospital is an event?! Well, I do! The blood values are good and if it stays like that we can increase the dosage of medicine as of next week. Also I haven’t take as many naps this week, which is nice because there was a moment that I was more often asleep than I was awake.

Also Saint Nicolas is in the country, and as young as we are, we were allowed to put our shoe at the chimney. It was such a fun week and it’s really nice that at such moments we’re with the whole family because of the quarantine tent. It always does me really well to see my brothers and we’re always having such a laugh. Fortunately we already had this much fun before we went into lockdown. We laughed and had a lot of fun and we’re really hoping that we can give each other a hug anytime soon.

27-11-2020

It feels like such a long time since we went to the PMC, but today we finally went again. Going for a check up to the hospital.
We gave all the assistants a necklace from Little Love Bird and of course some traditional “pepernoten” (little ginger bread cookies) covered in dark chocolate. They are happily surprised and start wearing the necklaces immediately. Today I got told, from of course one of my favorite assistants, how much she admires me. I already find it very normal the way I live and that’s why I find it very special that with my sober mindset I’m inspiring people.

Next we got picked up for my blood tests and to weigh. Guess what; of course I have gained weight again… stupid Prednisone. You could think “girl, don’t you worry about your weight,” but this actually brings so much extra problems along, more than you can think of.

After that we went to the Oncologist, who firstly asks how I’m doing. “Well”, I say, “I haven’t got much to complain”. “No I also haven’t received an e-mail with a list of inconveniences this time”, says the Oncologist while laughing. “But Mo, the test results of the lab show that the salt level in your blood is very low”, he adds. He wants to test my urine as well. Alright, the Oncologist arranges a room with a bed so I can catheter and after discussing the adjustments of my treatment we are going there. After we arrived, we discuss that this is a setback and that I should not take my treatment against the tumor over the weekend. I can’t drink too much and should eat more salt. Monday we’ll do another blood test and after that we have a phone meeting.

After the catheterization my mom suggest to get me something salty, it can be easily arranged. She asks me if I think that it’s a good idea. Well… I could go for a sausage roll! And before you know it some fans arrive at my room. So kind, haha. It’s not until 16:15 that we are on our way home again, were we hopefully are going into a lovely weekend. But first we’ll have some chicken soup (with extra salt for me)!!

11-12-2020

We would like a lot more weeks like these. I am feeling well and am noticing a slight improvement in my energy level. I’m also singing a lot, lovely. We’re all yelling along with BLØF all across the room.

On Tuesday we send the Oncologist an e-mail where we mention that my blood pressure is a bit low. His reply is that we temporarily have to stop taking the thrombosis treatment. Today we’re off again to the PMC. We also brought some fancy chocolates for the doctor’s assistants. First we have to get my corset adjusted, because it’s still not comfortable. After that I have to get my measurements taken and have to weigh again, which we won’t talk about… Then the blood test, having lunch and waiting for the Oncologist. I just took my last bite and there he is. It’s running smoothly today!

During the appointment with the Oncologist I start the conversation (because he keeps looking at me in a way that says ‘well, tell me!’). “Well, I’m feeling quite good”, and I start to smile. The Oncologist smiles back and tells me that it makes him very happy to hear that. If the progress that I’m making is due to the radiation treatment or the medication, he doesn’t dare to say. That is because my tumor acts quite differently than other tumors. The blood values are better than expected and therefore we are allowed to lower the dosage of Prednisone! That is such a relief as I’m still holding a lot of moisture due to it (ten to fifteen kg…). He wants to delay the scan until there is a direct reason to do so or until a new treatment becomes available. Then we talk a bit about the tv show “Pauw” where my Oncologist appeared. We share the credits and some compliments that we received about him from our direct environment. It makes him happy to hear that. In a positive mood we’re going home!

13-12-2020

Today we’re celebrating Christmas!!! Reason: I’m feeling well, everybody could get that day off from work and everybody already had their presents in da house… so, let’s do it!

Everybody was busy with their own task that day. Mom was wearing an apron in the kitchen, but also Zyara who made the grand dessert. Gyl and Yer were behind the bbq and Zoë and Char were sorting the last details. Dad was the superhero who was helping out everybody. Maybe Siem and I even had the most important task: we made a quiz, and with some minor adjustments it was also finished on time.

First we are sharing the presents with the person who’s straw we draw. I start and then we take our turns. When it’s moms turn everybody focuses on Yervin. He grabs his gift and reads what is on the card out loud: “a happy 2012!!” Nice work mom! After that we have some bites and the quiz is up next. We were all fanatic, but still some people (1) tried to cheat. But we won’t call names, right mom! Siem goes through the quiz like a professional quiz master. After that it’s dinner time! The guys are super grill masters because the côte de boeuf was amazing. The vegetarians among us were also enjoying their food, but then from another dish. After the grand dessert we are having a coffee and that was it. Christmas on 13 December; why not! We had a lot of fun, had amazing food and enjoyed our time with all the amazing people around us.

The next day another press conference. Oh how bad, ooooh how bad… For us it’s not a big problem. Nothing changes for us as we’ve been in lockdown since mid-March. But we are happy that we have seen everybody yesterday and celebrated Christmas as planned. We are very grateful for that.

We probably won’t even have the Christmas tree up around Christmas anymore. Since I wanted the tree up quite early (end of September, whoopsie). Every day our tree starts to look a bit more dried up. We’ll see how long we last.
Meanwhile I’m still stable and am writing a letter to my tumor (which you can still read in the previous blogpost from helpmonu.nl).

23-12-2020

The week before Christmas I had a lot of visits from friend in our tent, so much fun! Because no one has new stories, we are catching up on our memories. We are having a lot of laughs, so nice.

The day before Christmas we are doing a final visit at the PMC for the year. We are going through all the check-ups. My weight still sucks. After Christmas we well reduce the amount of Prednisone again. The dosage of my treatment against the tumor is at the desired level. Also my blood values remained stable. The Oncologist is satisfied and so are we! After that we chat with all the familiar faces in the PMC. After that we are getting my beads for the persistent chain, and we are off to home. On time for a cozy Christmas eve and of course a hopeful new year.

Year closure

The last blog from 2020; and what a year it was right? Lots of ups and downs, a pandemic and a quarantine in which we have been for the most of the year. Looking back we truly made the best from it: we have an amazing tent with a wood stove on the balcony through which I was able to see my friends and family, through which we could celebrate Christmas with the family. And despite all I was still able to celebrate the holidays with my friends (through Zoom). And so you see; as long as you do your best you can always give a positive turn to the situation you’re in.

Whatever the new year brings: I’m ready for it. Full of courage and hope, but especially strong and resilient I’m entering the new year!

Brief aan mijn tumor

Letter to my tumor

Dear H3K27M,

You have already been with me for a fifth part of my life; it’s been enough. I have been sick for four years and that means that I have already broken your record. You can’t win anymore. Don’t you understand that when I’m gone, you’re gone as well?

I want to extend my life so badly. You can help me with that, by for example stopping with growing. Therefore my question is: let the medication please do its work and give me the possibility to get my functions and life back.

In case you succeed to break me, my goal will be to make sure that this won’t happen to any other child anymore. I will take as much experimental medication against you. Even if I am gone they will still run tests on you.

I am already having a hard time accepting this disease and everything that comes along with it, but what you’re putting Siem, my family and others through is unacceptable! When ‘Mr. Tumor’ walks out the door, things should become better. Let me be! I never wanted you, and you never asked me if I wanted to share my body with you.

I truly love Christmas. And as a Christmas gift I ask you to leave. If you want to you can leave as slow as you came, but you’re going. Deal?! Not just for me but also for Siem, my family, Oncologist and all the other people that I love so dearly.

Lots of love,

Shymo

Elke dag dinsdag

Shymo’s blog: everyday it’s Tuesday!

19-10-2020

We had such an amazing week. I have seen a couple of friend and since the weather was wonderful we sat outside. There were also some amazing meals (mom’s food is always good) and we watched some movies with the family. But today it didn’t go too well, as I woke up with a terrible headache. Fortunately the paracetamol works but also other things are not going as it should be. Because of the tiredness my emotions are mixed up and I get sad. We decide to cancel the visit but to go through with physiotherapy. Cancelling a visit is never nice. But also last weekend I already felt a bit confused. On Saturday I had a moment where I thought “what should I do with myself?!” On Sunday my brothers always come over to have dinner in the quarantine tent and I asked everyone “at what time will Gyl and Yer arrive?” to which every time the answer was: “Mo, it’s Saturday” and then I said “oh how strange that they are coming over on a Tuesday then!” during the day I asked this about another five times to which I got told that it’s really Saturday. After all those times in the afternoon I said “but it’s Tuesday?!” and everyone was just looking at me and I said: “alright, if I mention today one more time that it’s Tuesday I’ll shoot myself through the head!!! To which we started laughing out loud! It’s not funny at all but at that moment it was. Next day I’m feeling much better. Some guests are coming over and also my physiotherapist arrives in the afternoon.

Regularly I speak with my parents about the situation and how I’m feeling, actually about how we’re all feeling. My mother always tries to cheer me up by mentioning positive things. For example, that my brother told that the previous blog post has been read over 1300 times on the first day and even more than 2000 times during the same weekend!!! “Nooo that many?!”, I said. So I tell my parents that not that many people are responding compared to how many people are reading it. So I have a lot of ‘sneaky readers’! and I was laughing out loud because of my own joke and decide that it deserves a spot in the dictionary, haha.

21-10-2020

It’s 21 October, which means that it’s my dad’s birthday. Like every year we bought him tools. It always makes him very happy and we’re having cake and two friends are visiting in the tent. At night my temperature increased and my blood pressure was low. The next day it’s still the same, so we get in touch with the hospital. Probably the adjustment of medication is the cause, so we are keeping a close eye to it. When I bit later I mention that I’m really tired and that I can’t ‘carry’ my head we are all getting a bit scared. They let my lay down in my chair and I fall into a deep sleep. As soon as I wake up it I’m all good again. Next we have three good days. Such a joy, really! Saturday my bestie Mirte and her boyfriend are coming over for lunch and Sunday evening my brothers will come over for dinner in the tent. So nice to be around each other for a moment! For a moment there is a slight panic when I say “mom, I’m smelling something strange”. If I get an epileptic seizure in this stage of the treatment that would be a bad sign. But fortunately mom smell the strange smell as well, so no epilepsy! Damn, that was a heartbeat of 180 but fortunately it was only some smoke from the wood stove.

Regularly we got told by people that are close to us that the messages that they get about me are a lot tougher, worrying and often so intense and sad than they read in the blog. That’s true, because there are certain levels. You have the family, the people who nurture me and are with me during all the conversations with my Oncologist. Those people know everything as they are with me when it happens. Then we have the second level of people that are close to me; they get a direct update after for example our talk with the Oncologist. Then in the blog there is a milder version. “Why?” people wonder. Simply because I also have a private life and we are already sharing a lot. No one is waiting for details on how a person with a paraplegia and bedsores all the way to the actual bone of my spine, needs to be nurtured for 24 hours a day and the impact that this has. For example, when taking care of my wounds we hear ‘boink’ on the floor sometimes. Yup, that’s my mom passing out. We can go on like that. It is what it is. We do provide the donors and readers good and honest info, but we’re not getting into every detail.

27-10-2020

How do you know if I’m doing well? That is often asked but probably the hardest question to answer, since it can be different any day. Mostly when I’m feeling well I have a lot of songs in my head and start to sing multiple times that day.
What I remember from being little is that we as a family listened a lot to BLØF and De Dijk in the car. That went a bit like this: “can the lights be turned off?!” “NO!”. That holiday was also my first youth trauma, as we had ‘the best of De Dijk’ on repeat for like 16 times in a row. Or “you are a jammouth that whines but you don’t know whatskeburt!” Huh Mo, did you say jammouth? That’s not a real song?!” Mostly the proof is being checked on Spotify.

How do I get through my days (happy)? Sitting or laying down, as my legs are not working anymore. For a while my arms were also not working, but I am feeling some improvement, probably because of the radiation treatment. I do hope that some functioning will come back in my left hand so that for example I can use my phone, brush my own teeth or eat by myself. Try having your teeth brushed by someone else, simply said: it sucks! Currently I am very dependent of others, for about everything that you can think of. I still have to get used to that and sometimes I don’t ask things as I don’t want to constantly burden the others.

As a family we are also running the webshop: littlelovebird.nl. We sell jewelry (some are home-made), clothes, bags and many other things. It became a family project so that I can join in as well. Before I got sick, I spend a lot of time on it as it is a hobby. Therefore my plan was to follow a study related to fashion. No I’m just delegating tasks here at home about what should happen. Be aware that even that already costs me a lot of energy. So during the daytime I nap for a couple of hours.

28-10-2020

Today should be an exciting day. Someone is coming over to measure me for an electric wheelchair! I have been super excited for days. Unfortunately the day starts bad, since I have a terrible amount of pain in my neck, shoulders and upper back. I think it’s muscle rheumatism. WHY?! It really pisses me off! What are we going to do when that person arrives…? First the regular morning ritual. After my medication and some food the pain is reducing, but results in a terrible tiredness. What a struggle with my own body. At 10:00 that person is coming over and now I’m looking up to it. How am I going to explain what I would like? We are not aware about what is and is not possible.

Fortunately that person knew exactly what he was doing, the friendliness and passion is present! He is very patient and explains a lot, but in a nice manner which is not exhausting me even more. Fortunately we discussed with the family beforehand, so eventually we succeed to produce a tailored wheelchair. This man made my day and afterwards I’m feeling a lot better. If it goes on like this I’ll even outdrive Verstappen!!

30-10-2020

Today we’re going to the hospital. But how, we’re wondering. Yesterday we spoke with the pain team of the hospital and increased the dosage. I haven’t ate yet either. Alright one bite of banana… So, what’s going to be the plan? Because with this amount of pain I cannot be carried in to the car. Slowly I start to realize that I cannot go to the hospital like that. My dad calls the PMC and explains the situation.
We are going through the notes of last week and notice that the pain continues to increase. It is mostly rheumatic pain, headache and pain in the stomach. Also breathing is not going well. Eating has not been possible since this morning. Belches and puking are also torturing me. At 13:00 the Oncologist calls and mentions the notorious P as a solution, what a surprise… Damn Prednisone, but as expected. Next week we’ll go to the hospital for all the checkups. As we speak my dad gives me the Prednisone and I should start feeling better in about four hours. And as I always say, Prednisone is my best friend but also my worst enemy (fortunately in this case my best friend).

05-11-2020

We had such a good week, unbelievable. Not only with fun things but also progress. I have places on my body where I feel something, am able to flex some muscles and require less sleep during the day.

Last Tuesday I was alone with my mom and we turned the speaker on. We choose BLØF! At the song ‘what would you do?’ my mom says “this is their best song!” I put the song on repeat and we’re both singing LOUD “wat would you do” and then “oooooohooooohoohoo!” We have the biggest fun and are both happy. Fortunately no one could hear us because we sound terrible. But then Zyara and Siem arrive and tell us that they could hear us even outside, haha oops! Ah well, I hope they enjoyed.

I’m also exercising more often and more intense this week since I really want to make progress. When the physiotherapist arrived today I said “huh?! On Wednesday?” Of course everybody started to laugh, “today it’s REALLY Tuesday Mo!” I also enjoyed all the visits this week, which are coronaproof of course. A whole week with lovely weather, amazing!!

06-11-2020

Last night I woke dad at 04:00, but was not sure why. On top of that: I completely forgot why. Dad told me that I should try to become a bit calmer and get some more sleep. That worked, but at 05:45 I woke my dad in an angry manner, which is not something I would normally do. I told him that I should be carried over from the bed to the chair. Dad got my mom and together they carried me over to the chair. I told them I could not see clearly, but at that moment I fell asleep and my parents decided also to have some more rest. From that moment I only know what happened as how it has been told to me. Therefore the following has been written by my mother:

At 08:00 Mo is still in a deep rest, we notice here breathing, which is not as it should be. She sleeps straight through the morning rituals and at 09:00, when we actively try to wake hear she doesn’t respond. We have to go to the PMC at 10:45, but how?! We call the Oncologist to discuss. He is afraid that the situation of Mo is getting worse. Huh, how? It was going so well, did she maybe have an epileptic seizure? He wants that homecare and/or our family doctor comes over to have a look. We have to get a clearer picture to make a plan. Homecare arrives quickly but Mo still hasn’t woken up. Strangely she is responding in some manner. Sugar levels are being checked, as well as saturation and temperature but this all seems to be at normal levels. Blood pressure: far too low in combination with a very high heartrate. The oncologist called again and says that the family doctor has to come over to decide if Mo should be taken to the hospital by ambulance for investigations. At that moment I call my sons at their work that they have to come over right now as we don’t know the outcome of this. Meanwhile the oncologist says, “give her 40mg extra Prednisone, if she responds well we’ll know how bad it is”. The family doctor arrives and Mo seems to wake up because of the Prednisone boost. We go through things, also how last week went. Conclusion: it seems very probable that it has been an epileptic seizure. Alright, breath in and breathe out. It’s getting calmer again, pfff! Mo starts talking with the family doctor and we are calling the Oncologist. When the family doctor is checking how awake Shymo is he starts asking questions. “Do you know who I am?” he asks. “Yes!” says Mo and she smiles. “Do you know your date of birth?” is the next question of our family doctor, to which Mo clearly answers, “Yes, 24 May 2000.” Last there is the ‘infamous’ question: “which day is it Mo?” “Tuesday!” says Mo. “No it’s Friday,” says everybody smiling. It is another Tuesday. The family doctor thinks that the treatment might resulted in an inflammation of the tumors and that this resulted in an epileptic seizure. Mo wants to eat, but first a glass of orange juice. The boys and their girlfriends arrived, good so first we get them up to speed. Everybody feels relieved. I ask Mo if she wants a Cheese sandwich since she likes that so much. To which I get a strange answer, which was: “I want fries!!” We were laughing and she got her fries! So halfway through the day it eventually started to normalize again. Our sweet Mo is back.

07-11- 2020

After this hectic Friday we go into the weekend. I tell that I don’t remember that much from yesterday. My family fills the gaps, through which I start to remember things. For example how sweet the person from home care was and that when our family doctor arrived he immediately yelled: “Hey Shymo I’m here!” and that it gave me a lot of energy. “It’s such a sweet man,” I say.

The Saturday is spend on sleeping. Fortunately when my best friend arrives with her boyfriend I feel a lot better. Still only at dinner I start to feel awake for a moment. Am I going to tell you again that my mom is a really good cook? Absolutely. Because we had such nice meals again, really enjoying it! Also the cake from Jaap en Suus Brakenhoff!!

At Sunday I’m still terribly tired and because of that I’m not capable to join my visitors. I’ll just have another nap and then we’re talking about hours. At 16:30 my brothers and sister in law come over for dinner. We are all enjoying mom’s pea soup or “snert” as we call it here. We all have some of cake as dessert to finish dinner well.

Lately we are catching up a lot of memories. I think because of the quarantine because we don’t experience that much anymore. “How did that rhyme go again,” I ask my mom “and that you were ‘drawing’ something at the inside of my hand at the same time?”
“The moon is round, the moon is round, two blue eyes, a nose and a mouth. And my mom has a big..” To which I say: “ASS!”. Ah memories, we are going to make many more!

11-11-2020

Today another hospital day. I haven’t been for a while so I’m actually looking forward to it, since I see it as my weekly trip. When we are in front of the desk we spot almost all of my favorite assistants. They have been celebrating something because there is a box with muffins arriving. They ask me if I want one as well, or ask if eating is not possible for me today. I’ll have one! And we’re all laughing again. They always cheer me up, even when I’m feeling super bad. Having all these kind people around me really gives me a lot of strength. Next a blood test and replacing the probe. Replacing the probe goes wrong twice, so we’ll try the other nostril. It barely goes but eventually they manage. “Are you alright Shymo?” asks the nurse. I’m always good at putting my emotions beside but this time it was very hard. When the probe is in it seems that my voice is gone. I found this to be very scary and at such a moment it is hard to avoid becoming emotional. When I left the nurse I found it very sad for her. She was doing her best and it was not her fault. My suspicion is that my left nostril is smaller than my right, ah well. Then, when we’re going to the ECG-room, I notify my parents of they can get closer. They response is: “Huh, WTF she cant talk!”. For a moment we are afraid that the tube is in my air pipe or that my vocal cords are pierced. After the ECG I’m dead tired. I can lay down and the Oncologist arrives. He is very resolute: “that probe has to go right now!” Fortunately I was able to talk right after the probe was removed. After that we went back to the Oncologist to finish our conversation. He is happy to see that I enter the room talking, but bad news never comes alone, always in three. My blood values are very low and my Oncologist is also not happy with the outcome of the ECG. The dosage of the treatment has to go down and also no thrombosis medicine for the moment. We discuss some things and head to the treatment room for the probe. I choose my right nostril, where the probe was before as well, with the hope that it goes well in one go. They succeed in less than a minute; this has to be a world record! We need a moment to catch our breath and are driving home full of good courage.
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Vijf voor twaalf

Shymo’s blog: It’s five for twelve

As some of you probably already know I stopped with the most recent treatment and I have also finished radiotherapy by now. My biggest hope of course is that my arms will recover. At the moment I can do barely anything… Therefore I have written this blog together with Siem and my mother.

17-09-2020

Today we start with blood tests, to end the treatment. The nurse is meeting us in the waiting room of the MRI to fill up the tubes. What I find very relaxing about the MRI is that you can pick if you want to watch a movie, listen to music or just silence, but the sound of the MRI is so loud that there actually is no silence. This time I decided to watch Shrek (part one remains the best). After the MRI we have a good hour before we have to go to the next appointment. We decide to have a sandwich in the hospital restaurant. It seemed to go well, but after five bites I tell that my hands starts to act weird. Then the tingling moves quite rapid to my shoulder. The three of us thought the same “there we go again!” It gets worse and worse, I become confused and can barely talk. I was talking with a twisted tongue and we decide to use the anti-epileptic spray. That is a nasal spray which really burns in your nose, pffff. Almost immediately tears are tearing down my cheeks, because it hurts that bad. I want to sleep but sitting straight up in a wheelchair that is not possible. Multiple times I slip away due to the tiredness. After twenty minutes my dad and I go the UMC to measure the mask and to get a CT scan. The mask still fits, which is good because then I don’t have get a new one fitted! At the end of this long day I’m finally having the CT scan. Monday we will start with the radiation treatment which is quite soon and we are hoping for positive results.

18-09-2020

This morning I was laying in the sun and really enjoyed it. It was so relaxing! But after a while I said something which was not very clear. Mom asks me if I’m having an epileptic seizure. I tell her that’s not the case, but after a while did get confused and talking became harder. I wanted to get up and sit and dad had to hold me firmly for that, but it was too hard and eventually I pass out. When I recovered from that my dad tried to put me in my wheelchair but I pass out again.

That same evening the oncologist calls with the results of the MRI scan. Multiple spots have grown, also the spot which is causing the epileptic seizures. Next week we’ll start with radiation treatment. I’ll possible be hospitalized for five days.

22-09-2020

Today I’ll be hospitalized in the PMC. I don’t feel too well so I’m not looking forward to it. Fortunately I only have to go for radiation treatment. At least we don’t have to drive up and down five times to Utrecht, however listening for an hour to Queen in the car is not bad! At home we have made the agreement that mom always stays with me when I’m hospitalized. Still dad visits us every evening. We think it will be five calm days (yeah right, we think!). I know many people at the hospital who always drop by for a chat. I doesn’t matter if it’s a doctor, nurse, cleaner, someone from the food trolly or anyone else from the staff, we always have the greatest time. But the first day does not go that well. I’m not feeling well. I have a lot of pain from the radiation and I’m even getting a fever. Yesterday I did get dexamethasone, that helped me during the day but it didn’t get me through the night. Today the plan was to start with prednisone, but for now I’ll have to stick to dexamethasone (which is even more fun…). And as cherry on the pie they also add tramadol to that. All in all it’s good that I’ve been hospitalized, because everything goes at a much faster pace.

As usual I had a conversation with my Oncologist. Softly speaking, it was shit. He is shocked by how much I have deteriorated in a week. It doesn’t match in his mind, based on the results of the scan (a bit of grown), with how bad I’m doing. We hope that the radiation treatment will result in a lot of positive development and we keep hoping for a new treatment. We are so done with this stupid cancer. When is it finally enough?!

Every day we race with the bed through three hospitals to get to the radiation treatment room. Also the staff who joins me always makes sure I feel comfortable. The team of the radiation treatment always take their time to position me well; an exact task where nothing can be left to faith. The radiation treatment itself fortunately doesn’t take long. Only the mask that they fit over your head doesn’t feel comfortable, but I’m not claustrophobic. For the rest I endure it just fine! Mom tells me that every time when she has to leave me in that room she thinks about how proud she is of me and that I’m strong. People are impressed how I’m going through with all this. The days fly by and after the radiation treatment I’m on my way home.

26-09-2020

This is a “you-better-sit-down”-message. I have been thinking since yesterday how I’m going to tell this. Yesterday I had my last radiation treatment after which we spoke with the Oncologist about follow-up treatments and future perspectives. In my case the future perspectives are often, hopeless, negative and just shit. And then I’m still putting it mildly. Meanwhile almost four years have passed. Four years ago I started walking badly and so my first problems were noticed. After investigating, about six months later, we got told that I have cancer. Aggressive, malicious, fast growing and also rare. The fact is that no one has every survived this; I am the longest living so far. We have also heard over a hundred times that there is no cure. And what is especially bothering me is that a lot of things were the last time. Like cycling, walking, going somewhere spontaneously, chilling with my friends and laying in bed with Siem. You keep thinking that these things will come back but you can’t assume it. And still I’m enjoying life to the fullest.

The Oncologist will have a conversation with our family doctor, the comfort team and homecare. I asked the Oncologist why but I did not get a straight answer. This gives me the feeling that I’ve entered my last weeks. I cannot explain how that feels. Still I get back to my sentence: “giving up is not an option”, which makes him smile again. To that he responds with: “I think we all know that Shymo”. He expresses his admiration and respect, which makes me feel well. I told him I’ll do whatever it takes and will try any experimental treatment. He is my hero and I told him. Everyday there are still new solutions, trials and results coming in, so there still is hope! Most people have eleven months when they get my diagnose and every time they confront me with that I tell them that I’m already living for four years with this. They call it a miracle. But an unusual case calls for an unusual solution. Meanwhile we discuss a new type of treatment with the Oncologist. “I want to go for it!” I say, when they were discussing the risks of the treatment. The Oncologist grabbed my shoulder, looked me in the eye and said: “I’m with you”.

02-10-2020

Today is a good day as it’s my oldest brother’s birthday! I have a nice surprise for him: we start to notice small improvements and we assume it’s because of the radiation treatment. My right arm can move a bit up and on my left side there is a bit more improvement in my fingers. I also notices little spasms but of course this comes together with sore muscles. And you can guess… I’m terribly tired. It would be so nice if I could be on my phone again for a bit, but for now that’s not an option. On 30 September I stopped with the prednisone. Eating and drinking is going well but the expectation is that it will get less again over time. That’s why I can pick whatever I want to eat. That’s why I can pick whatever I want to eat. And I don’t mind that at all! Think about moussaka, endive with mashed potatoes, chicken… actually just anything that comes from my mom’s kitchen, because she is an amazing cook.

05-10-2020

As of today I’m making big progress. How come…? Even the Oncologist says “something with a capital P” (Prednisone, of course). But Tuesday I could even meet up with some people in our quarantine tent. For Wednesday we have planned a conversation with the Oncologist, family doctor, the comfort team and home care. The goal of the conversation is to discuss for when I need more caretaking in the future. Then that’s sorted and everybody has their tasks. Meanwhile there is a high-lowbed and a hoist at home. Fun is different, because you don’t want these sort of things.

We had a good conversation on Wednesday (despite the topic) and we have more clarity. I’m never allowed again to have a full weekend of pain. Afterwards we discussed with the family how lucky we are. We have an intense committed Oncologist, a lovely home doctor and such sweet people of home care and the comfort team. Today we have started with a new experimental treatment and we are curious what it will bring.

08-10-2020

Today I’m more tired than the last recent days, but then yesterday was quite intense. It also became a habit that after breakfast I’ll have a nap. In the afternoon my physiotherapist will come over and I can’t wait to show here that I can move my arms up again.At least, for a few seconds. My training immediately becomes more intense. I don’t want to lose my arms, so we’re going for muscles! The sweetest physiotherapist in the world is very pleased with the progress. Later in the afternoon the occupational therapist came by. She had lots of tips and is doing her utmost best. I find that very special.

Since my hands are not working that well I arranged that my friends can schedule appointments with my mom to meet up. I can’t guarantee that I can go through but week is scheduled with plenty of meet ups. Siem, Zyara and dad build a tent on the balcony with a heater! Genius! Because of that we can have a coffee with the sweet people that have been supporting us and helped with for example the groceries. I want to share that we have an amazing network around us. All amazing people in team Mo, while it does continue to feel strange to say that.

Last night at about four o’clock I woke my dad. My arm fell of the chair and out of habit I put it back on the chair. So way to loud I say: “DAD! DAD!!! Look at this!” I throw my arms in the air and hear my dad say: “How great Mo!” He didn’t realize it yet of course, haha. I fall asleep right after and the next morning I give the whole family a show.

11-10-2020

There it is, I’m losing my hair. For the whole week I had an itch and pain on my head because of the radiation. To reduce the itch we combed out my hair. Careful of course because we don’t want to pull out any additional hair. I can’t be sad about it… Maybe because I’ve gone through this a couple of times now of because of the amazing wig that I got from Move Hair Solutions. And I also have worse things on my mind. We are not really thinking about what if it goes any worse. We still believe in the miracle, but the clock is ticking.

#itsfivefortwelve

moeizame zomer

Shymo’s blog: tiresome summer

01-09-20

During the ‘prednisoneweek’ I ate a lot and everything tasted great. But this story does have a downside. I immediately notice that that my body starts to itch like crazy (from the inside), as I’m holding more moisture. But as soon as I stop taking the prednisone the pain comes back. At home we read this really good article from a doctor, who did research about the tiredness that comes along with muscular rheumatism. By reading this I started to recognize some of it. But what can we do about it? Going back to the prednisone is currently not an option for me. My oncologist and I came to the conclusion that Prednisone and I have a love-hate relationship.

Frequently we get asked what I’m exactly suffering from. Hmm, exactly? Do you have a minute? Often this is a question asked out of politeness and people don’t want to actually hear the whole answer. So often the answer to how I’m doing is “fine”.

But still, the answer will be as precise as possible for the moment, because as soon as I’ve finished mentioning everything something else has to be added to the list. Let’s start with having a rare kind of brain stem cancer and a paraplegia, which makes me fully dependent of my wheelchair. Besides I also have a defective thyroid gland, which probably was due to one of the many treatments that I had. Also I have to deal with muscular rheumatism which is only controllable when I’m getting an injection, which cannot be combined with other types of medication that I’m taking. This rheumatism pain is indescribable and is influencing my mood (haha yes that’s possible, even positive Shymo gets angry sometimes!). And then we haven’t even started yet about the physical discomfort that comes along with a paraplegia. These are unbearable, but it does make you very creative. I also suffer from epileptic seizures and am losing the ability to use my hands. I could make the list even longer, but it won’t make anyone happy.

Sometimes people don’t know how to respond, which makes total sense and it doesn’t matter. There’s no such thing as a script on how to react. “Oh, but you’re still doing well?” and “to me it seems she’s not even bothered” are reactions that I get a lot and am totally done with. Or people who start to tell what they have gone through. Instead I prefer it that people just don’t know what to say. This should make you feel speechless right?
Most people can’t imagine what my life looks like. Even at home it is sometimes hard to understand. Even I am not sure what I’m going through. A while ago an outsider even told me that it “might be all just in my head” the puking and not being able to eat. That upsets me.

02-09-20

Sometimes before we go to the hospital I already have the feeling that it will become a weird day. Today is such a day. We had to be there at 09:00 for a blood test, but we told the multiple times that it’s too early and so we eventually arrived at 09:32 at the PMC. As it was crowded, the blood test was taken at another department. I always do this with my dad. Meanwhile my oncologist already arrived to pick me up, but had to reschedule due to the delay. At that moment I have to go to the bathroom, so when I’m there we receive a phone call from the nurse “that she lost us”. After that we could go straight through to the meeting room.

First a neurological examination. They observe that I have not lost any more of my strength, which makes the neurologist not unhappy. I also mentioned that I haven’t had an epileptic seizure for 6 days!! We are talking, options are being discussed and on Friday we have a phone appointment with my oncologist. He wants the MRI to be next week, but when growth is shown on the scan I’ll have to stop with the treatment. Without a new treatment. For now the recent developments are being processed and on Friday I hope that we’re all on the same page. That it’s not going too well as I’ve stopped with the prednisone, is a fact. But that has nothing to do with the neurological part. Again we are up against a difficult choice. Personally I feel that it’s not going well and that is also what I told my oncologist. He agrees, and I also noticed during our conversation that it makes him feel sad. It does something to him. Mom, dad and I have till Friday to decide about the MRI; coming Wednesday or in three weeks. Also my oncologist has to think about it. But if we choose for this Wednesday and there are signs of growth, the treatment will stop and there currently is nothing to replace it with. You can assume that we choose to continue for another three weeks. Because if something happens meanwhile, the scan can be scheduled in a matter of days. We want to continue as long as possible as we truly believe that it could work. And I don’t believe that after only eight weeks you can already be sure if a treatment works or not. Also a new plan has to be made for the prednisone, but my oncologist is looking for a way in the middle. For example two times a day fifteen milligrams, but then I will become the Michelin man again.
The doctor gave kind compliments; he admires how I deal with my illness. And that “I show up every week and undergo everything.” I enjoy hearing that.

09-09-20

After the euphoria of last week we had a terrible weekend where on Saturday morning it all went wrong, due to a big epileptic seizure. Which repeated on Sunday. As every week we left this morning to go to the PMC. Of course we gave notice on Monday already about the problems such as new wounds, epileptic seizures and a stomach and intestines that are not functioning properly. The dose of ‘extra’ medicine for the epilepsy is being doubled. The oncologist tells us that the epileptic seizures don’t have to mean that the tumor is growing. Any patient that has undergone radiation treatment on the head can develop epilepsy due to scar tissue. Apparently the probe has to be replaced next week (which is routine). But the problem has to be solved, otherwise we’re still stuck with it. The blood results are not telling what’s going on. So as I always say: bummer with the hat on. Multiple things are in the lab cultivating. Hopefully that will tell us something, which enables new treatments. I’m still able to eat but drinking is nearly impossible, as I almost choke right after taking a sip. So we try to maintain it through my probe. I drives us mad, that almost nothing can be done in a normal manner anymore. But we continue to hope! After almost four years something has to work right? In about a month we’ll have the result from the new MRI. Unless meanwhile something happens, but we will not assume that it will. Let’s go!

16-09-2020

Today we went a bit later to the hospital than usual. It was not a bad week. I went outside and ate BBQ with Char and Gyl and I even went to the beach. So we thought to share some positivity. But before we left this morning I had a minor epileptic seizure but it faded away soon. When we were in the car just before entering the highway it went wrong, because the epilepsy came back and was intense. Lucky us there was only traffic light ahead and there we could spray the medication. Extremely tired, not approachable and weak I arrived at the PMC. Fortunately the nurse immediately noticed what was going on. She made some calls and we could go to a room with a bed. When we arrived I fell asleep almost immediately. I didn’t notice much from the blood test and weighing. Then they came to place a second probe, a stomach probe. That was painful but they managed after ten minutes. I went back to sleep but then my oncologist arrived. Normally we go to him, which computer wise is a lot more convenient. After sharing our modest “list of the week”, came the conclusion of the doctor: this week the last time for this treatment, so end of treatment. That was a hard one to swallow… A period of radiation treatment is therefore unavoidable.

After that the nurse pops by. She came to tell us that they will take a picture, to see if the new probe is fitted correctly. Meanwhile dad gets a phone call that tells us that tomorrow at 12:15 we have to be here again, for an MRI. The nurse tells us that the probe is not fitted correctly, it’s curled up in my esophagus. Sigh… The probe is being pulled up and pushed down again. I notice that my mother is having a hard time with it. Fortunately they manage to fit the probe correctly. The info about the coming period trickles in. Tomorrow we will also have a meeting with the radiologist and the radiation mask has to be adjusted. Afterwards I’ll also have a CT-scan. Meanwhile the treatment is going through the drip and we are waiting for what’s coming next…
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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?