Tia

Our journey with cancer has been a long one. At the ICU one of the nurses said this is a marathon, not a sprint. She could not have been more right.

Summer of 2013 was shocking. First in June a new family member moved in bringing changes to our daily life. Then at the end of June my biological daughter started feeling unwell, she had pharyngitis which was first misdiagnosed as laryngitis, and when she wasn’t getting any better we were told she had infection induced asthma. She was unable to breathe at night but was feeling better during the day. I kept going to different doctors, I even turned to a homeopath for advice. It took three weeks to get to the bottom of it. On July 16th, on the most shocking day of my life we were once again at the central hospital where this time we were thankfully seen by a competent doctor.

It all became clear then – our lives would never be the same again. Our daughter was diagnosed with a massive tumour in her lungs and we were taken on an ambulance to Turku University Hospital and their paediatric intensive care unit. In the ambulance Tia collapsed, she couldn’t breathe and had to be resuscitated. It was a matter of seconds and battle between life and death.

While in the ICU, Tia spent ten days in a ventilator. In the beginning it was hard for her to breathe even with the help of the ventilator and for the first three days the situation seemed hopeless – the doctor came in and told us to prepare for the worst.

We spent two days just staring at the clock. First they told us that the first 24 hours after resuscitation were the most critical. Then they told us that the first 24 hours after starting chemotherapy would determine if there was any hope of the treatment working. The tumour was 8cm long and so widespread that it reached all her organs from the top of her stomach all the way up to her larynx. They told us straight away that Tia wouldn’t survive an operation. In the beginning she would not have survived even an MRI scan.

On the third day Tia came back to us, almost from the dead. The doctor came in to tell us that she was responding to the chemotherapy and the tumour was getting smaller. Slowly but surely it was getting smaller and had stopped spreading. In three weeks the tumour had spread from one lung to the other and started pressing on the heart and crept up to the larynx. The fact that it had stopped spreading was a miracle in itself.

Tia was still unable to breathe without the ventilator. Again we were left waiting, my husband and I taking turns sitting by Tia’s bed and hoping – and I was praying. I was bargaining with god. They brought a blind child into the ICU. I realised I was praying that I could hold Tia again, even if she was blind, and to see her smile. At the same time I was thinking, how could I wish anything but a balanced life for a child so full of life.

On one of those evenings my husband asks me: What do we do if the tumour doesn’t shrink enough for her to breathe properly again? What do we do if the doctors say there’s no guarantee that Tia will get better? The question confused me. We will do everything we can to ensure that won’t happen. My husband said again, careful but certain: But what do you think, is there a point on the doctors waking Tia up if there is no hope of her ever getting better?

My heart shrank. I wanted to shout: ”Yes there is a point, I haven’t had the chance to say goodbye, I haven’t had the chance to say how much I love my daughter, how proud I am of her every second of the day and how I am sorry – sorry I held her down during her procedures at the hospital...thousands of unspoken words”

Miraculously you are capable of making decisions even in situations like this. After a while we had reached an agreement: if she’s unable to breathe without the ventilator, we’ll ask the doctors not to wake her up so she can spend her last days under general anaesthetic.

Tia tried to wake up several times during that week, but her breathing didn’t work. Our instincts and the need to talk to her kept telling us, let her wake up so we can at least talk to her. But she would have been in agony. She would not have been able to talk, she would not have been able to understand why she had a tube down her throat not to mention other tubes all over her body, why there were machines beeping all around her and why she was unable to breathe normally...so time after time she was put under anaesthetic. During the worst of it she was being given eight different, strong drugs intravenously.

On the tenth day, Tia was taken off the ventilator. Nobody was sure whether or not it would be a success. It was awful having to wait and see if Tia was able to breathe on her own or would she have to be intubated again. Of resuscitate her again. Another thing we were afraid of, was that would it be Tia or a different kind of child altogether. Would I still feel like she was my child.

Tia had never in her life been this quiet until she was resuscitated in July 2013. Even when she was being born, her head only partly visible, she was babbling to me. Tia always fell asleep in the middle of a sentence because she always had so much to say. It was difficult seeing her silent for weeks at a time. I was her occupational therapist, hospital clown, mum, bather, singer, friend; everything and anything that I knew how to do. Tia was only sitting. I played with her toys in the room, crawled along the floor on all fours, tried on funny hats, sang out of tune, played video games, cleaned her wounds, changed dressings, took her to the bathroom like a little baby, chatted, sang and she remained very quiet.

At the moment Tia is very much like her old self in that she is constantly talking, sings a lot and is interested in the Swedish language. Tia started school in the autumn and for her it was like winning the lottery. Tia has made a friend in her class, a friend who has had a tumour as a baby and there are no words to describe how much this means to her. This girl has a scar in the same part of her body as Tia does (on her bottom), and the two girls have inspected each other’s scars, which brought them closer to each other. They have only known each other for a few months but it’s like they’ve known each other forever.

As a mother, I know Tia will never be the way she was. During the ambulance ride the sustained brain damage to both of her frontal lobes due to the lack of oxygen. At first she was unable to walk, run, climb the stairs, hold a pencil or use the remote control. Little by little her fine motor skills have returned and Tia can now paint, write, play games and knit.

Tia’s biggest dream is to dance and to be on television. As a mother, every single day I’m grateful that Tia made it through alive. We were told that Tia would probably not make it. She did make it. 

So what if she’s never able to ice skate or dance. She’s alive! This is a mother’s feeling. I’m finally at the stage where I can believe that she will carry on living. I’m not constantly thinking that she is going to die. Even though that fear is still there.

I’m now starting to think about the things Tia has lost. She may never be able to perform as a dancer. Or be good at sports. She may always be one of the slowest and clumsiest in her class. She is a very capable girl. Now she is on average 18 months behind other children her age. Not enough to say that her situation is a bad one. No. I look at our friend in a wheelchair. I think about our friend who passed away. I realise, I cannot complain. But now I’m at a stage where I’ve started thinking about the things Tia lost. Now that I’m not constantly afraid of losing her.

Tia was a very brave girl. With great confidence. Now she’s so afraid of any medical procedures that at her worst it takes five people to hold her still. Tia has always had strong social skills. Nobody doubted her ability to make friends. Now, as she was starting school, she asked: Mum, how do I make friends? Two and a half years is a long time in isolation. A very long time.

Now Tia has a friend who is very important to her. But she is worried about losing her friend, more than a seven year old should be. Whenever I go away somewhere Tia is afraid that I won’t come back. She’s no longer afraid of her dying, but now she believes I will die before she does. She’s afraid of losing people. One day Tia said: Mum, let’s hug and I’ll sit on your lap because we don’t have all our lives together. You’re going to die before I do.

These are all things that cancer has brought into our lives. Pondering, depth, sadness, fear and growing up faster than you should have to. But especially for Tia, it has brought the ability to enjoy life, every moment to the fullest. We were at a fun fair in a carousel side by side when Tia said: Mum, this is the best night of my life, I will remember this even when I’m up there sitting on a cloud.

These are the words of a child with cancer. Or at least a child who has had to witness her friends going up to sit on a cloud. A child who’s had to wonder when she is going to go up and sit on a cloud. For a long time, Tia believed that she would leave this world before I do. One of the hardest moments was when she asked me would I go with her when she dies. When I answered that I couldn’t go with her.

Fighting spirit – that’s something Tia has more than the rest of the family put together. It’s nothing short of amazing.