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  • Writer's pictureCasper de Leuw

Non linear journey you said?

Nearly 4 weeks ago Angele wrote a blog post called "A non-linear journey but I dare to dream!". Well, non-linear it is indeed.

The following is an attempt to bring across what we've been through the last few days. It is raw, rough, and maybe scary for some to read, but I want you to judge for yourself and I need to get it out of my system.

The last days have been rough, and really tough on Angele. While being in immense pain, she started having small fits. At first I did not recognize them as such and thought it was just the pain flaring up, but yesterday they became bigger and stronger, lasting for minutes instead of seconds. This was the day after she received radio therapy to try and alleviate the pain in her back. We knew that with radio therapy the pain would initially increase, but we did not know it was going to be like this.

One of our main goals this time around was to try and have Angele close to us and at home for as long as feasible without putting her in any form of danger. Not everyone understood or agreed, but up until yesterday I was fully in control. I took care of her pills, made sure I was always there or have someone here as a backup, made sure we had our appointments in hospital, arrange for equipment and help from hospice etcetera.

Yesterday I lost control though. The fits turned into seizures lasting minutes, with Angele being completely unresponsive, eyes wide open in full body lockup. After the 3rd I grabbed a bunch of random PJs, a toothbrush, and phone charger and threw it in a suitcase. That was followed by the painful fight of actually needing to get her in the car. She refused to leave the bed so I literally had to grab her, carry her up the stairs and put her in the car. And off we went. At least not chasing an ambulance this time, just playing ambulance myself.

In hospital we flew through a packed emergency room straight into the resuscitation area. They did not need to use their equipment thankfully but it was quite clear that the situation was getting out of hand.

Throughout the evening the seizures increased in both duration and intensity, with the cherry on the cake being a 45 minute long episode. This was the moment where the doctors started to have their dreaded worried look on their face. "We might need to consider the next step". Just give it to me straight, what is the next step? Medically induced coma. Ehm, ok, do I have other options? No, not really... But first to intensive care, just in case.

So after midnight, just over 23 hours ago, they rushed her through the empty hospital hallways to the intensive care. It took them an hour to get her properly setup, stable and under control. Or maybe it was 15 minutes, but it felt like an hour. But they managed to make her feel at ease and calm, and there were no more seizures. She was sleeping.

So not much options left for me but to go home and try to sleep for at least 3 hours.

This morning, after getting the kids ready for school and childcare, dropping them off "fashionably late" (just before the first break) I went to the intensive care unit. To my surprise Angele was actually talking a bit. Still quite confused and dozing off, but they were already discharging her to send her back to the neuro medical ward. And that's where she now still is, and she has been improving quite a bit throughout the day. Slowly being able to communicate again, sleeping a lot, dozing off, but more and more responsive. Her brother and sister are staying next to her throughout this night, and I am back home with our 2 lovely children.

While Angele was so far away not being able to properly talk, I did the squeeze my hand game, to make sure she was still hearing me. And that's where the "Dare to dream" part comes back. "Squeeze my hand if we're going to Vienna in August". Squeeze. "Squeeze my hand if we're going to Marco Island in September". Squeeze. "Squeeze my hand if, when I make enough money, we're going on a short road trip through the USA after our Marco Island retreat". Strong squeeze.

What will the future hold for us? Nobody knows. It will be a rough path but a beautiful journey, and I dare to dream. I am doing whatever is in my power to make that road trip happen, and Angele is doing everything she can to get herself back on her feet.

A big massive thank you to everyone that has been helping us out the last few weeks. Taking care of our children, feeding us, being there for us, donating money to our GoFundMe, sending us their love. We will keep on paying this forward, and will keep on spreading the love. Thank you!!


Click here to open the GoFundMe page that we have set up.

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