Ziekenhuis foto Shymo

Shymo’s blog: where is my miracle?

01-02-20

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

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

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

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

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

14-02-20

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

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

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

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

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

Shymo en Elsa

Physiotherapy with Shymo

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

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

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

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

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

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

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

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

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

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