The Course of My Treatment

Part One.

Hospitalisation

It was in April that I found out about my diagnosis and was immediately admitted to hospital, too. It was a lot to take in. Over the course of five days, I underwent so many tests on all my organs and had so much blood taken that I couldn’t count it all on my fingers and toes.

But it was necessary to find out whether I could undergo the treatment chosen by my parents: Zolgensma. (There are three types of treatment to choose from, but I’ll tell you more about that another time.)

But then…

There was a complication, and quite a serious one at that. While all sorts of tests were being carried out, something came up that even the doctors couldn’t explain. One of my enzyme levels was extremely high, but only that one. Usually, when this enzyme comes back at a high level, other enzymes tend to be elevated, too. But in my case, only one was high. So we were dealt another blow.

The medication had to be put on hold until the doctors could find out what was going on inside my little body.

If the wait turned out to be longer, I would be given a different type of treatment instead. But it would be very painful and, above all, would have to be repeated every four months (injections into my spine).

At that moment, Mum was completely devastated. She was so scared that the treatment she had been hoping for — a medication administered just once and considered the very best option — might be out of reach for the foreseeable future. Dad had to look after me for a few days.

We had to wait another seven days for the enzyme to be tested again. Everyone prayed day after day that the level would go down — and it did.

After another blood sample was taken and a few hours of waiting, Mum’s phone rang with the news:

“We’re ordering your daughter’s medication from America by air today. It will arrive on Thursday. Please come in tomorrow for hospital admission so we can administer the medication.”

It was the best news anyone could have received during this incredibly difficult time.

Part Two.

I’m sharing this post together with a photo gallery. Please forgive me — some of the photos are filled with sadness, pain and suffering, but also hope, which I was given thanks to the doctors at Motol Hospital.

I want to share everything with you. So… my medication had been ordered.

Mum and Dad brought me to hospital in a car packed to the brim with all sorts of things. You see, after receiving the medication, I had to remain in complete isolation (staying in my room), so Mum simply had to pack absolutely everything we might need.

And the whole roller coaster started all over again.

Once again, blood samples were taken — several times — to check that my enzyme level had gone down again. Then came preparation for the operating theatre.

Yes, even though I was still so tiny, I had to be put under general anaesthetic. This was because a special line had to be inserted, leading into a vein near my little heart. That procedure cannot be performed without anaesthesia.

This line is used to take blood samples, which need to be collected every single week after the treatment. And believe me, there’s a lot of blood involved! I can’t imagine having to be pricked with a needle in my little body every week instead.

But saying goodbye to Mum and Dad before the “operation” was very sad.

My parents accompanied me to the doors of the operating theatre. Mum held my hand and smiled to keep me calm.

But what she was going through inside is something you can see in the second photo. It wasn’t easy for her to have that picture taken. But she knew that she would share my story with you when the time was right.

She waited for me in our room for about an hour. After an hour, they brought me back from the operating theatre. It wasn’t a pretty sight. I was still asleep in the trolley. The nurses carried me, naked and covered in disinfectant, into my cot, where they began gently waking me up.

When I woke up from the anaesthetic, I was in pain and crying. Not even Mum and Dad could comfort me. It hurt so much.

Eventually, I fell asleep in Mum’s arms from sheer exhaustion. And Mum cried again — a lot. I don’t blame her. Seeing me so helpless and in so much pain would be heartbreaking for anyone.

After a few hours, I woke up and I was feeling better. While I was asleep, I had been given some medicine for the pain, and it really helped. I even managed to eat something and play for a little while.

The day passed relatively quickly, and then finally came the long-awaited D-Day.

D-Day — or the day hope dripped into my little foot

And here it is — D-Day! Mum and Dad couldn’t wait for the afternoon, when my infusion would finally arrive. The plane had been delayed, but don’t worry — the medication arrived.

The medication travelled all the way from America to Motol Hospital just for me. 🫶

Once it arrived, it had to be specially thawed (it is transported in a frozen state at an incredibly low temperature) before it could be administered to me.

All morning, staff were coming and going outside our room, preparing the equipment and setting up the area for our isolation.

At around 4 pm, lots of people gathered outside our door — medical students, nurses and doctors dressed in protective clothing, all there with my medication.

I was already waiting on a hospital bed, ready to go. Mum also included a photo showing the moment when hope was dripping into my little foot.

The infusion took about an hour, during which I was closely monitored. An amazing doctor and some lovely nurses sat beside me. They listened to me and checked on me while I looked through books with Mum and Dad.

Everything went smoothly, without any complications. 🫶🙏

But now another stage began. 🧐

The side effects stage. 😳

After the treatment, side effects can occur, including high fevers, vomiting, drowsiness and, most importantly, abnormal liver test results — the big thing everyone was afraid of.

Because the doctors know that the treatment can have a significant effect on the liver, I had been prescribed corticosteroids before the treatment, and I’m still taking them to this day.

So, how did it go for me?

That evening, I developed a high temperature, and the next morning I started vomiting.

Mum didn’t sleep at all during the nights that followed. Even though I was connected to countless machines monitoring my vital signs, Mum sat beside my cot, constantly watching over me and stroking me.

Of course, Dad took turns with her, too. He was able to stay there with us until late into the night.

Somehow, we got through it all, even those several days of isolation.

And do you know how?

WE HAD EACH OTHER. ❤️

E.