Shymo en Mirte

Can you imagine that you best friend suffers from cancer?

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

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

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

But how do I feel about this?

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

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

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

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

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

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

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

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

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

Lots of love,

Mirt

Shymo Bestraling

Shymo’s blog: radiation therapy

24-07-19

I had radiation therapy for the fourth time today. It was a long day but it went by just fine, without any problems. As of today, I’m allowed to reduce my medication dose (we’re talking about forty pills) and I expect to feel a lot better then, mentally. Physically, I’m moving forward rapidly; I can make a ponytail in my hair, paint my nails, cut my own dinner and I tried to pluck my eyebrows. As a result of being hospitalized for a week, I almost couldn’t move my right arm. I couldn’t even shake someone’s hand. Well, look at me now!

I already underwent radiation therapy twice for my bone marrow so I knew what to expect. My father and I are a great team with this kind of stuff, so that makes it easier too. When your brain undergoes radiation therapy, you get a fitted mask on your face. That makes it hard to breathe and you have to lie down for approximately fifteen minutes. I’m sure not everyone can handle that, especially when you’re claustrophobic. I have to undergo radiation for another six times during this treatment. I’m glad I know how to respond in situations like these. Let’s do this.

A lot of people don’t know that during radiation therapy, your torso has to be bare. Since it happens so often already this doesn’t bother me anymore. You should know how ‘exposed’ I already am! It is all for a good cause though. And I have my boyfriend Siem, who reminds me every time that I ám beautiful and that raises a lot of love in me.

Foto Ilonka en Shymo

A little thank you from Ilonka to the hospital

The question our family gets asked most frequently is: “How is Shymo doing?”. We’re doing OK; we’re taking it one step at a time. If you’re with Shymo every hour of every day, you don’t really see that her condition is getting worse. Our home is modified on many fronts, to make it as comfortable as possible for Shymo.

Two weeks ago she still was working out on the hometrainer with the physiotherapist. A day later she was in a lot of pain and the day after we came home with adjusted pain medication. The day after, we raced to the hospital because Shymo was in unbearable pain.

She was hospitalized immediately in the Princes Maxima Centre in Utrecht. Pain, fever; everyday she would get a higher dose of her pain medication. I was with her twenty-four hours a day. There I stood beside her bed: holding her hand, giving her a sip of her drink… I felt powerless, helpless, and desperation.

The kids in the Princes Maxima Centre are definitely the greatest. And the staff; all of them are amazing. It did not matter if it’s a doctor, nurse, janitor, therapist or people from the food trolley. They all showed care, warmth, understanding, love, patience, and were very personal and really professional at the same time. Compliments to the hospital for getting together such a great team of employees.

Shymo is now home again after a week and I’m trying my best to be as good as the food trolley.
Thank you, amazing people of the Princes Maxima Centre.

Ilonka
Shymo’s proud mama

Shymo’s first blogpost

Hi everyone,

From now on I will make use of the opportunity to start blogging on the website. The last period was not easy, you could say that I have been through a lot, more negative than positive. I recorded these moments. I will try to write as many blogs as possible about the things that happened to me the last couple of weeks, but also about my daily life. Also I want to tell you all about the setbacks that I got because of my illness and all the emotions that come along with it.

15-07-19

Unfortunately I have some bad news. Since Thursday I have been in the Princes Maxima Center in Utrecht. I had a fever and a lot of pain in my stomach and back. De doctors gave me strong pain medication and ran a lot of tests. They keep me connected to the heart monitor. I came there with the thought that I could go home the same day, but this was not the case. As of today, when I finally started to feel better, the results of the MRI came in. All tumors have grown. In the US is the solution, but it is still not sure if I can go there. It is necessary that I get that solution. So a foundation has been founded, of which the last details need to be sorted, after that we can start raising money. To either become able to go to the US, or purchase the treatment and bring it to the Netherlands. Tomorrow there will be a meeting about plan B (to start another radiation treatment) because the growth needs to slow down, otherwise my condition will get worse very quickly. No I need to rehabilitate from all the esketamine they gave me in the hospital, so hopefully I’ll be back to normal pretty soon.

19-07-19
Hey all,

To give you some more clarity. My right hand is not responding that well anymore because my paralysis is getting worse. I’m trying to answer as many messages as possible, but that takes a lot of energy. I just got home since yesterday from the hospital, but I still feel quite bad. Fortunately I’m home, it was like hell in the hospital, even though the people there were really nice and the food was delicious. Five nights of crying because at one point the certainty, hope and courage were all taken from me. I went to the hospital just for pain, but left with an even worse paraplegia.

They convinced me heavily to get radiation treatment for ten days, so as of today I started with that. The doctors want to give me the radiation treatment in such a way that it would be possible to get another radiation treatment in the future if needed, and they believe that this will work. For now I have to recover a lot but in the meantime I have to go to Utrecht every day…

The last few nights I slept very well in my own bed, fortunately. The amount of support that I get with donation feels bizarre. But I appreciate it enormously. As well as all the love that I get from my family, friends, Siem and all of you of course. This week feels unprecedented. But for the rest I still feel like a dishcloth, so hopefully I will feel better soon. If you have questions for me, don’t be afraid to ask them, but do know that most information is available on the website and social media.

Lots of love, Shymo

Our target amount and goals

Dear all,

Thanks to your help we have already been able to collect € 25.000,-! That is great news, but we are far from done. In this blogpost we want to explain to you about how we got to the total amount and what it is meant for.

As you know, Shymo’s lifesaving medication is situated in the United States. This medicine is still in development. That is why it is hard to obtain and very expensive. If Shymo can only get the treatment in the US, she will need to travel there every four weeks for approximately two years. Also, the insurance company does not cover the expenses and everyone knows American healthcare is very expensive anyway. Especially medication which is not easy to obtain! And last but not least, Shymo will have to provide a medical bail. This is for possible medical complications.

We are talking about:

  • medication: €150.000,-
  • medical bail: €100.000,-
  • travel and residence: €130.000,-

Since the amount is ridiculously high and we don’t want to be entirely dependent on just your donations, we set our target on €300.000,- for Shymo’s treatment.

As of today the target of €300.000,- will be placed on the homepage, as well as the amount of donations we already received!

We are now going to tell you something about the goals of our foundation. We understand that you want to know where your donations will end up. The primary goal of our foundation is ‘To collect money for Shymo Korver so she can afford and acquire medical treatment abroad, to cure her from her illness’. This concerns all the cost mentioned above; travel and residence, medication and the medical bail.

“But what if Shymo is cured and you still have money left?”, we get asked multiple times. The people behind the foundation truly believe that Shymo will get cured from her illness. That is why, during the process of writing down our goals, we thought about Shymo’s future. Therefore, the second goal of the foundation is: ‘and after being cured to support Shymo in realizing a living environment where she can function independently’. An adjusted living environment can be very expensive and since we want to support her in this financially, we included it as our secondary goal while setting up the foundation.

We hope that with this message the target amount and goals are clarified sufficiently. The fundraising had a very good start, but we are not there yet! So please keep spreading the message and donating and by doing so, helping Shymo to a bright future!

Welcome to this website

Dear all,

Welcome to the website of the Help Mo Now! foundation.

With this first blogpost we have officially begun with collecting funds for Shymo’s lifesaving medication. Donate and help Shymo on the road to recovery and to a bright future.

The board of the Help Mo Now! foundation consist of Gylian Korver and Charlotte Rubingh. If you have any questions about the foundation you can contact them per email at [email protected], or by telephone on +31657333814.