Will's Story - Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month and all of us here at The Lane & Co family believe it is vital that we shine a light on this awful disease. Our amazing shop gal Megan and her son Will have experienced the effects of childhood cancer first hand and we are so proud to share her story of strength and love below.

Before we hear from Megan, please allow us to share some facts with you. In Australia, Childhood cancer is heartbreakingly the number one cause of death by disease of children in Australia. Two children are diagnosed every day in Australia and, tragically, 1 in 5 will not win their battle. Unlike many adult cancers, childhood cancer is not associated with lifestyle and nothing can be done to prevent it. Childhood cancer also does not discriminate. It can affect any child from any socioeconomic or cultural background. 

There are many different types of childhood cancers, the most common being leukaemia, lymphoma, brain cancers and bone cancers. Treatment is usually gruelling, painful and isolating. 

Three quarters of survivors will suffer from ongoing physical and/or mental health problems as a result of the treatment that saved them. This can include organ damage, heart disease, osteoporosis, infertility, obesity. Psychological effects like depression, anxiety and PTSD are reported in almost 50% of survivors. Cure comes at a cost. 

Awareness is key to improving current treatments and hopefully one day finding a cure. Greater public awareness of the horrific treatments these children have to go through, can lead to more funding from government and large businesses towards life-saving research into quicker, easier and more effective treatments and, eventually, a CURE!

Will’s Story

Hi guys, I’m Megan - one of the shop gals at Lacey Lane. I’ve been asked to share my family’s story with Childhood Cancer for Childhood Cancer Awareness Month. 

In May 2011 my husband, Nick, and I welcomed our first child, William. He was such a wonderful baby; Chunky, happy and delightful. He was one of those babies who would bat his eyelashes and give a big grin to the ladies behind us in line at the supermarket and would charm everyone. No one would have ever guessed that at 9 months old a swollen lymph node in his groin would lead to a cancer diagnosis. 

After a terrifying week of a million tests, scans, questions, panic attacks and tears all around, Will was diagnosed with a rare type of Leukaemia and so we were thrust into a world that is every parent’s worst nightmare. There was so much we didn’t know, so much we needed to learn. 

With no time to catch our breath, he was taken to surgery to have a Central Venous Line (or CVL) inserted. This is a tube that runs from a main vein in their neck under the skin and hangs out of their chest with two bungs for medication to go in and to take blood out of. He was not allowed to get his lines wet, so this meant lots of plastic and tape to cover it for shallow baths only and no swimming at all. It is also a constant worry of germs getting into his lines and causing him to get sick.

This marked the beginning of 8 months of intense chemotherapy. Over these grueling months William endured; 

• 23 general anesthetics;
• 16 lumbar punctures with intrathecal chemo (chemotherapy injected into his spinal cavity);
• 8 bone marrow punctures (massive needles into his hip bones to remove some bone marrow for testing);
• 13 blood transfusions; 
• 2 minor surgeries; 
• 1 major surgery; 
• 6 PET & CT scans; 
• lost his hair TWICE; and 
• more blood tests than I could keep track of.

My brave boy was administered 10 different types of chemotherapy, steroids (which saw him gain ⅓ of his body weight) and he had to take antibiotics and anti-fungal drugs everyday as a precaution. 

During those 8 months we were in and out of hospital, usually for long stays of 4-6 weeks at a time. When he did have a strong enough immune system to be able to go home, he was not allowed in public places and not allowed near dirt, grass, sand or dust due to the high risk of infections. So it meant he missed out on so many parts of a normal childhood; eating dirt, playing in a sand pit, going to the park, he didn’t get to do any of that for years. We did, however, make lifelong friends. Other patients and their families became our closest friends, we supported each other and still do today. 

His age at diagnosis was both a blessing and a curse. He was 18 months old when we finished the most intense part of his chemo treatment and now, at 8 years old, he no longer remembers the worst part of it. On the other hand, it felt like a curse as he was not able to tell us how he was feeling. He couldn’t say “I have pain” or “I feel sick.” He could only cry and we had to try and guess what he needed based on what treatments he had had recently. Heartbreakingly, it also meant he didn’t understand what was going on, we couldn’t explain what was happening and why.

As horrific as this all is for the kids, it is almost as hard on the parents. There is nothing harder than seeing your child so sick and in so much pain and knowing there is no way for you to take it away from them. Early on in the journey I promised myself I would be there for everything, the good, the bad and the ugly. If he had to go through it, I would be there with him. I held him while he went through these harrowing experiences and there are times that will haunt me forever.  Through all of this my husband Nick had to keep working. The bills don’t stop and the world does not stop turning when a child gets cancer. He was amazing! He would work a 12hr day, go home to shower and change and drive the 45 mins to the hospital and hang out and have dinner with us every night. He would see how sick his boy was and how stressed his wife was, then he would drive the 45mins home to an empty house, try to sleep and do it all over again the next day. I can’t even imagine how isolating and awful it would have been for him. 

Even after Will finished the intense 8 months of his chemotherapy treatment, his little life was affected. He required a further 18 months of maintenance chemo treatment and although thankfully it didn’t make him sick, he was still not able to go to daycare or playgroups due to his reduced immunity. He still got sick often and we had many trips to the emergency department

Once the 18 months were up and he finally had his last dose of chemotherapy on the 28th of March 2014, he got to ‘ring the bell’ in Oncology Outpatients. This signalled that he completed his treatment and he received a certificate of bravery. He was almost 3 and the video of him ringing the bell still gives me all the heart explosion. 

I am so so blessed to say that in March this year William was officially pronounced ‘cured’ from Infant Acute Lymphoblastic Leukaemia. Unfortunately it’s never really ‘over’. Because of the chemo he had pumped through him at such a young age, he will need to see a cardiologist every year for the rest of his life due to his high risk of heart problems. He is also likely to be infertile, he suffers from ADHD, learning difficulties and anxiety and his social skills were affected. 

Through it all we were so blessed to have an amazing family who rallied around us to help wherever they could. We had an awesome network of other oncology families we could talk to who understood what we were going through and the hospital staff (especially the nurses in the oncology ward) were incredible. They were always there for us when we needed them with answers, help or even to watch him for 10mins while I ducked downstairs to buy a coffee.

My biggest blessing by far is William. He is amazing! He is such a sweet, kind boy. He is stubborn and strong and a wonderful big brother. He loves babies, loves to dance, ride his scooter and wants to be a ‘YouTuber’ when he grows up... and he has the vibrant, entertaining character to do it. My favourite time of day is when we lay on his bed to read before bed and he still snuggles right in and says “I love you bigger than the sky, Mum!” and he has no idea how much I love him and how lucky I feel to be his mum.