Choose joy over bitterness
Walking through those doors and reading, Children’s Cancer Centre, we knew then what we had been dreading the last three days. Our daughter has cancer. Things now started to become real. Our oncologist said, ‘You’re about to get on a treadmill, and there’s no getting off it’. He was right.
It was December 2019, the school year was ending. My eldest daughter was graduating primary school and had a birthday party, while my youngest was graduating grade one. Not to mention graduation parties, Christmas concerts, dance concerts, and my end of year client rush. I ran my own hair salon and everyone needs their hair done before Christmas. Life was busy this time of year. Every December was.
My youngest had woken up sick again. This wasn’t unusual for her. She had always been a unwell kid, even as a baby. She had food allergies, eczema, recurring urinary tract infections, high platelet counts, and a small hole in her heart. This particular morning she had a high temperature and had sweated through all her sheets, which was becoming a regular theme, and she complained of pain when she urinated. I tried to book an appointment with our regular GP but they said “Sorry they are unavailable, can you see someone different?” I say “Sure, it's just a UTI. She probably needs antibiotics.” She had been admitted to hospital for UTIs before, so let's get onto this quick. Booked. We head down.
We walk in to see the new doctor. I explain that I think she has a UTI. He looks at my daughter and asks “How long has she had this lump on her neck for?” I see it straight away. How did I not see it before? How did her own Mum miss this? “I have no idea? I’m so sorry.” I reply. He’s so kind, he doesn’t make me feel bad, if anything he makes me feel better. This new doctor just saved my daughter's life. He is still our doctor today.
Sitting in the Children’s Cancer Centre for the first time I watch all these families coming and going with their kids. Children with no hair, some with short hair growing back. Children with ports hanging out from under their t-shirts. Some children are in wheelchairs, some with feeding tubes, some struggling to walk. But do you know what most of them carried? Smiles, hope, and laughter. I was not expecting to see people laughing and joking with each other, like it was a normal day. It was a beautiful sight. Here we were, our world crashing around us, and in that same room were all these families going through the same thing and they looked joyful, even though I’m sure they would be suffering inside. I wanted this.
That night I told my husband I would ‘Choose joy over bitterness’. That did not mean I wouldn’t get angry, sad, or disappointed, or feel any of those emotions, but I refused to let cancer eat me up inside and make me a bitter person. I was going to make this journey a positive one.
Christmas Eve, 2019 was the day my daughter was admitted for surgery. They removed one of the tumours in her neck and inserted a central line (a port). The port was located in a different position than usual because she had so many large tumours where her main artery was. We had no idea that day would be the beginning of our traumatic port world. The beginning of a life filled with needle phobia and severe anxiety. This port would help save our daughter's life, but would become one of her greatest sources of fear. Every time a nurse would go near her port she would become anxious. I was on high alert at all times but as mumma bears do, we just keep on going!
She was on a Stage 4 Hodgkins Lymphoma clinical trial for six months which involved high-dose chemotherapy and an extreme dose of steroids, with very few breaks. This was intense for her little body, intense for her emotions, and was intense for the the whole family. Add to this covid lockdowns, so we couldn’t see anyone. I would chat and smile at every nurse, doctor, cleaner, physio, or whoever walked past. I craved people, yet I isolated myself and not letting many in. I was determined to be as joyful as possible, but forgetting to stop and look after myself.
The day we were told that our daughter was in remission something clicked in my brain and it felt like I was allowed to crash. Everything began to fall apart. I had been holding everyone together, telling them that it was going to be ok, and getting my daughter through every traumatic procedure. It was now time for me to stop and look after myself. I became anxious, got mild depression, and suffered PTSD. I had flashbacks and cried in the shower. Certain smells would trigger me, or a piece of clothing, or a song. Funnily enough, I could still find joy, and somehow wasn’t bitter about what happened at all. It made me want to know my purpose in life.
I closed my hair salon to work on my health. Meanwhile, I had a stirring inside me that I couldn’t get rid of. I knew there was something else I was meant to be doing. Surely, we went through this traumatic experience for a reason? I didn’t want life to go back to the way it was.
At the same time we were learning that cancer does not just stop when your daughter goes into remission. She still had her port in, just in case, and it needed regular flushing and would get removed a few months later. She was also on medications for months after. Scans and blood tests went on for weeks and months later, and still to this day. We were seeing a psychologist and trying different tools to help with her needle phobia and anxiety which was starting to help. We were trying to settle into the ‘new normal’. To be honest, I’m not sure things will every be the same again.
During this period, I was lying in bed one night and an idea popped into my head. A mental health toy that had a velcro port kids could easily stick on during their port procedure to help with anxiety, and give them a sense of control. The toy would come with emotion badges so kids could express how they are feeling. We discovered that sometimes kids are so sick they can’t speak and they are so disregulated that pictures of emotions will help them find peace. The next morning I was so excited to let my daughters know, to see if they thought it was a good idea, especially my youngest, my harshest critic.
I pulled out my hand-drawn sketch and I quickly rambled on about what I planned to do, “... and he’s going to have a backpack on his back to store all his emotions… and I’ll name him Boo!” I pause to look at them, hoping and praying that they like the idea. My eldest smiles and says “I like it Mum, he’s cute!” She’s always kind and supportive and I knew I’d get her over the line. One down, one to go. Now for my harshest critic. I braced myself and thought give it to me! “I would have used him.” She doesn't say anything else. She doesn't have to. My eyes start to well up. Those words meant the absolute world. I WOULD HAVE USED HIM.
From that day in late 2022, My Buddy Boo was born. I finally knew my purpose. It was to help kids know that it was OK to not be OK. To help kids learn that ALL emotions are OK. To help kids be seen and to help kids be heard. To try and make medical procedures less traumatic and help children feel more in control in an environment that they feel they have no control over. And most of all I just want to make a difference and give back.
Boo officially launched in March 2024, so we are still a baby of a company but I’m beyond proud of what we have achieved so far. We have donated over 20% of all our My Buddy Boos to children in hospital that are diagnosed with cancer or other life-threatening illnesses. Plus, with the help of our generous ‘Boo Crew’ customers, we have gifted an extra 25% of our stock! Boo has already helped with port access, explaining procedures and identifying emotions. We have also provided Boos to local primary schools, disability programs, kids mental health wards, psychology clinics and much more! Look out world! Our next generation of children are learning how to express their emotions and by golly this is going to be AMAZING!
I would not wish our journey on anybody but surprisingly, I also would not change it. But what I do wish for you is that you find time for yourself, you always smile kindly at others, and you seek joy. Life is not a given, it is a gift, and a very fragile one at that.
Choose joy over bitterness.
Katie X