I love you, mom

I haven’t been really active with The Flo-world on any platform the past months. But that has a reason I want to explain to you. On September 10th, 2018 I lost my mom. She was 53. The last year she fought so bravely against leukemia and never thought of giving up.

Klik hier voor de Nederlandse versie van deze post. // Click here for the Dutch version of this post.

My mom, sister and I in Rome in front of the Colosseum

On November 13th, 2017 we (my mom, sister and I) got the most surreal news ever. Mom had acute leukemia. Excuse me? My mom was a little sick, the flue at most. But leukemia? I never thought that this sickness would be a possibility in our family, let alone that my own mom would get it.

From that moment on it went like an express train. We went to the hospital immediately for further research and the diagnosis turned out to be correct. Two days later my mom was admitted to the quarantine department of the university hospital of Leuven, a one and a half hour drive away from our home. We got so many terms, treatments and bad news thrown in our faces in such a short time. I never cried so much. Mom got breast cancer three years ago. But we remained positive and she completely recovered. But now I could only think negatively. Leukemia, you never hear anything good about it.

Hospital ≠ home

The treatment was tough. She should have three long periods of chemotherapy. She had to spend those periods in the quarantine department and would they take at least four weeks per period, but could take much longer, that was entirely due to her recovery and blood results. Between these periods she could go home for two or three weeks, to go back again to Leuven for the next chemotherapy. The fourth treatment would be a stem cell transplant, and we were happy, because three out of the four brothers and sisters of mom had a 100% match with her. What meant that the doctors could choose the best possible donor. That fourth period she would get chemo again and then some kind of rabbit serum that would completely destroy her immune system, so that the new stem cells got all chances to be accepted by her body.

The chemo periods never lasted ‘only’ four weeks, but five, six or seven weeks. It often took a long time before her blood results were good enough to go home. But once she was home, she did so well. We could celebrate Christmas Eve together at home and at New Year’s Eve she enjoyed a long evening with friends. But after two or three weeks she had to go back to Leuven, and that was more and more disappointing. Always in such a small room between the same four walls, not being allowed to go outside, have nothing to do. It was so though. And then the fourth treatment period came: the stem cell transplant. It went well and after a few weeks she was allowed to go home. She often had to come back for a check-up, twice a week. That was always a tiring, long ride.

My mom in the hospital getting her stem cell transplant

Not working immune system

But mom got more and more problems with ailments that indicated that the stem cells had been rejected, and she ended up in the hospital again. The rejection itself was not abnormal, but with mom it was more extreme than with other people. Cortisone and rejection inhibitors were increased. It did not get better. But after a very long period in the hospital, there were some improvements. She was allowed to go home again, but the medication remained on high doses to stop the rejection. But these medicines kept her immune system completely low and it didn’t got a chance to increase. Mama was very susceptible to everything, bacteria, viruses and fungi. From the beginning she was not allowed to eat, do or get in touch with many things because it was too big a risk for her to get a disease.

The time she was at home wasn’t good. She was weak, and did not get any better. She was taken back to hospital. Another bacteria here, a virus there. She picked up everything. The doctors wanted to reduce the cortisone to give her immune system a chance again. And that seemed to succeed in the first instance. Meanwhile, she got a fungus in the lungs. Nothing too bad, but the treatment would take a very long time. At least three months before there was a real result, but that treatment could be continued at home. But it didn’t get any better, it only got worse. Meanwhile, mom was in the hospital for two months. She should’ve been there for a maximum of a week… The fungal medications didn’t seem to work. The fungus had spread to her brain, a little later to her eyes and also to her skin. It suddenly went so fast. Four treatments were available for the fungus. But not one worked with mom. And then the verdict came.

My mama, sister and I in her last days

“You are such a beautiful woman.”

The professor who guided mom so well the whole time came to tell the news in tears: “We can’t do anything anymore. I am so sorry. You are such a beautiful woman.” Everyone had felt it coming, but no one wanted to give up hope and certainly not mom. She wanted to fight for the life she deserved so much, but did not get.

The verdict had fallen, and mom wanted to go home. She could. I asked the professor how much time we had with mom. “Maybe three good days…” Three f*cking days. Three. Three…

The same evening, Monday, September 3rd, 2018, we came home. Mom was brought home with the ambulance. We had already prepared everything, the hospital bed was ready, the doctor, nurses and palliative care were notified. And family and friends.

Saying goodbye to mom

I did not want to say goodbye to my mom. I, a 26-year-old girl, did not want to say goodbye to her sweetest mama, 53 years old. There were not three good days, there were two. We tried to give her everything she could enjoy and friends and family came to say goodbye at times when she wanted it. But mom did not want to say goodbye, nor did we. Mom wanted to live. From Wednesday afternoon it went downhill. Mom became more confused and frustrated and she got more pain. This was the hardest of all. The day after, she fell into a deep sleep. Until Monday 10 September. At a quarter past four in the afternoon she stopped breathing. Two last sighs and she was gone. My mom was no longer here.

My mom in her last days saying goodbye to friends

My mom was so loved by everyone. Family, friends and colleagues. Five days later, on September 15th, 2018, we said goodbye to her in the crematorium with a service that we had put together with texts from family and friends, photos and music. The room was packed.

This feels so unfair. Mom fought so hard, she wanted to live so hard, for her, but also for us, my sister and me. All her life she has done everything so much that my sister and I could do everything we wanted and so we would feel loved. We could tell her everything. It wasn’t always easy with us three, but we were the three musketeers together. Together at home, traveling together, playing theater together and partying together.

Today, October 25th, 2018, mom would’ve been 54 years old.

Mom, I love you.

My mom and I and two friends of theater in Paris

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