“After having two beautiful little boys, Cayden and Franklin, I so desperately wanted a girl. On July 19, 2017 my wish had finally come true and we met our beautiful little Piper Winifred.
We found out earlier in my pregnancy that we were expecting a girl. I don’t think I have ever been so excited in my life. The shopping started, decorating her room was so much more fun than with the boys. Her big brothers loved choosing clothes for her, which usually consisted of tutus and anything sparkly or Princess as they would say. Piper was such an easy baby. There were no issues with her birth. She slept and ate well and was always happy and hitting milestones on time. We were all so happy with our life; it was everything I had ever dreamed of and more. Piper completed our little family perfectly. Her brothers were completely obsessed with her from the day they met their little sister.
In May 2018 Piper began vomiting, we just thought she had gastro but then she spiked really high temps, so I got her checked by a new GP. He was worried about her pale skin color and said to come back in a week for a full blood count if her color didn’t return. He prescribed her antibiotics for what he thought was an ear infection. I did end up taking her to hospital when her temps got really high and we got turned away. It was ‘just a virus.’ Exactly one month later, she started vomiting again. As I was feeding her, I felt a hard lump on the right side of her belly. I instantly got a bad feeling about it so got her into the GP that day. He felt it straight away and got his colleague to check. They both agreed it felt as though her liver was swollen. They sent us straight to hospital. I had all three kids with me at the GP and no family close, so we had to wait for their dad to get home from work so we could take her to get checked.
They took some blood and then we were admitted to the ward. Around 9 p.m. a aoctor came around to speak to me and explained the only reason her liver would be enlarged is because of HIV, Hepatitis, or cancer. The first two were unlikely as I tested negatively in pregnancy. I was all alone getting told this news, which was terrifying. I didn’t want to alarm any of our family, so I kept it to myself all night. I couldn’t bare to tell my husband over the phone while he was alone with our boys.
The next morning, her blood work came back as abnormal and we were sent to the children’s hospital. By then my mother in law had arrived to have our boys so my husband could come with Piper and I. We spent the entire day doing scans and tests trying to get some answers. We were then given a room on the oncology ward. Instant heartbreak. Later that afternoon, we were told our perfect little 11-month-old baby had cancer. Neuroblastoma to be exact.
Neuroblastoma is a rare childhood cancer, but the most common in infants. We knew from the scans that Piper was stage 4 as it had already spread from the adrenal gland to the liver, lymph nodes, abdomen, chest cavity, and ovaries. The thing we didn’t know was whether she was high or intermediate risk, which would determine how much treatment she would need.
The following morning, she went for her first general anaesthetic and first surgery. They put in a central line straight to a major blood vessel near her heart and took a biopsy of one of the tumours. She then started chemotherapy that afternoon. A couple of weeks later we finally got the results of the biopsy, she was mycn amplified, which meant she was high risk. This meant we had a big road ahead of us. Piper would need 5 rounds of chemotherapy, surgery, stem cell transplant, radiation, and 6 months of immunotherapy. There are so many side effects to all the treatment, vomiting, diarrhea, mouth sores, weight loss, and some much more serious side effects which can land the kids in ICU.
We had to rely on family taking time off work and traveling to stay with our boys while Piper had treatment so my husband could continue working to keep a roof over our head. This meant I was always the one to spend nights and time in the hospital away from my boys. I always missed out on special things with them which was extremely hard at the time. You don’t want to disappoint any of your kids or treat one of them as more important than the other, but at that time Piper’s treatment was our biggest priority.
Stem cell transplant was definitely the hardest, we were isolated for 4 weeks. She didn’t see her brothers for three weeks. They would both cry and beg to see her which was absolutely heartbreaking. My husband luckily had most of that time off to help me as we basically wouldn’t get any sleep with Piper up most the night being sick or in pain. Something you wouldn’t wish on your worst enemy. Her transplant journey began at the end of November which meant we were highly likely going to be spending Christmas in the hospital. But by some small miracle we got discharged on Christmas day which was honestly the best gift I have ever received.
Most weeks that we weren’t inpatient (which was usually or a week every three weeks), we had to drive to the hospital for a full day of appointments about three days a week. I was constantly exhausted, living off red bull and coffee, trying to juggle school dropoffs for my eldest and then spending the day at the hospital with Piper and Franklin who was two at the time, or all three of them the days Cayden didn’t have school or over the holidays. The hospital is an hour each way from where we live so that added to my exhaustion.
Around March 2019, Piper began getting really difficult. More and more unhappy, losing weight, and just becoming a completely different kid. The doctors put this down to the medication she was receiving during immunotherapy. By May, she wasn’t wanting to walk much at all and constantly cried if I wasn’t cuddling her, which is fine but extremely difficult when you’re a mom of three and already spending a lot of time away from your other two children. She began holding her stomach over her liver and saying ouch. Even though there was still disease in her liver on her last scan the doctors dismissed our concerns saying it was just a virus or the treatment, but for a not even two-year-old to pinpoint a spot and say ouch repeatedly was just plain odd. We had just lost a little friend from the ward who was Piper’s age who died after relapsing and the Doctors not listening to her mom, so I thought maybe I was just overreacting and thinking the worst. I fully trusted our doctors.
Saturday, June 8th my husband was cuddling Piper while the boys were in bed and noticed a huge lump on her belly button. We had noticed that morning her eyes were looking a little yellow. After being dismissed every other time I was worried going to hospital was a waste of time, but we went anyway. Multiple scans in the middle of the night and the next morning we got the news the tumours had spread. I was instantly extremely angry; I had told the doctors multiple times that she wasn’t ok, but they wouldn’t investigate. The chance of relapse is 50% for high risk neuroblastoma. I began researching all our options and we decided we would be heading overseas to take part in trials for relapse neuroblastoma.
Unfortunately, we got the news that her liver had far too much damage and she wouldn’t be accepted in any trials because of that. We decide to do chemotherapy here to try and get rid of some of the tumours on her live to improve the function so she would be accepted. The first few days of chemo was looking really good, her liver function was improving, we were doing chemo and natural treatments. On the 4th day, her liver function began to decline again, and they did another scan which showed the disease progressing, meaning it was most likely resistant against the chemo. I spent my days researching every natural treatment possible but on the 17th of June we were sent home to wait and see if the chemo would eventually work.
We kept our eldest home from school that week and had to explain to her brothers that their baby sister was probably going to heaven. Cayden who was now five instantly said we had to find her a new doctor or make her soup to make her better but eventually understood that no one would be able to help her. This was the hardest thing we had to do. Thursday the 20th, June 2019 Piper woke up the best she had been all week. She wanted to eat, interacted with her brothers and was just a bit happier. My husband decided to take Cayden to a football game with the rest of our family as she seemed so well.
About 5:30 p.m. she vomited, which was mostly blood. I called the home nurse who came to check on her. She called the doctor and got me to give her pain relief and said to get my husband home asap. It took him 45 minutes to get home. He left Cayden with the rest of our family and he made it home in time to cuddle our baby girl for the last time.
At 9:14 p.m. she took her last breath. I will never ever get that moment out of my head. It’s the most dreadful feeling listening to them breath so slowly and wondering if that’s the last breath. We told her it was ok to go and that she wouldn’t be in pain anymore but then the moment she did we just wanted her back. We got Cayden home and woke Franklin up out of bed. They got to cuddle their baby sister one last time and say goodbye. The funeral home came and got her just after midnight. Watching your little girl be placed onto a sterile metal bed in the back of a white van all on her own just shatters every inch of you. We said our final goodbyes on the 1st of July, 18 days before her second birthday. There’s something about seeing your 5-year-old carrying a tiny little casket that will break your heart and make you so proud all at the same time. He was always holding his little sister, and this was the last time he would ever get to.
The next few months were the hardest. My husband and I grieve very differently, and we had to both try and help our boys, now 3 and 5, grieve their sister. They always talk about her and we never stop them as much as its hard to hear at times. We will never let them forget their brave, strong and beautiful little sister who was dealt the worst cards possible.
It hasn’t been easy having to see little girls everywhere. All our friends and family have girls and it constantly reminds us what we are missing out on. I constantly imagine what she would be like now and often wake from a dream to think the whole thing was just a bad dream and that she’s still here which is heartache all over again. This Christmas will be our first without our girl and Christmas shopping for the boys has been horrible. I hate having to see all the girly things I can no longer buy and the only thing any of us want for Christmas we will never get.
Piper’s journey was extremely hard on all of us but it also taught us so many things. It’s taught me about a whole different world no one knows about. There isn’t enough awareness, funding, or support for childhood cancer. Childhood cancer is so very isolating. You spend your days driving to appointments, being in the hospital, and still having to do the day-to-day tasks that come with having a family. The housework doesn’t stop, nor do the bills. My perspective on life has completely changed. We don’t take anything for granted. Every day is a blessing and it’s not worth worrying about the little things. Those little moments are what you will remember forever. As much as my boys can drive me mad some days, I am so so thankful to have them here driving me mad and just wish more than anything Piper was too.”