I want to tell you a story about my daughter Francesca. We chose her name, thinking it was a beautiful name for a woman. Her older sister was named Camilla, so we wanted something to match the femininity of her sister’s name.
But we also loved the nickname Frankie. It evoked images of a cheeky, bright-eyed little girl and oh, that is what we got!
My gorgeous girl was the completion of our family. She was the chubbiest baby and smiled all the time. She loved her daddy so much – she would light up when he came home from work. She became a real daddy’s girl.
She often favoured the company of her uncles and grandfathers over the women in our family, much to everyone’s amusement. Frankie was known for her feisty little spirit and love for her big sister.
She was known for her love of food, which was quite evident by her delightful chubby rolls. Frankie was a rough and tumble toddler, fearless, happy and content.
Life, to me, was perfectly imperfect. Something I suppose I took for granted. But now I know better.
Following a family Christmas holiday to Adelaide, South Australia in 2015, we returned home to Queensland to a normal routine. Camilla was starting prep, and I was looking forward to getting some more one on one time with Frankie with her big sister off to school.
I started taking Frankie to swimming lessons in the new year. She loved it, of course. But one week her teacher commented on a large bruise on Frankie’s back. I agreed it looked nasty and I’m sure I commented on how ‘on the go’ Frankie was.
The next week, her teacher said the bruise was still there. Week 3 – it was still there.
Frankie seemed to be in relatively good health, but like all toddlers, she suffered from colds and viruses here and there.
We took her along to the doctor early in February after a virus seemed to take hold. She was given some antibiotics, and we mentioned the bruising. Our GP felt it was all within the normal scope of a busy 2-year-old.
Frankie’s antibiotics seemed to improve her condition for the week, but as soon as the course was finished, she was flat again.
On a Friday night in February, we had my sister’s family over for dinner. All the kids were swimming and playing, and all seemed fine. Saturday morning, I headed off to shop with my sister, leaving the girls with their dad.
Duncan called me after a couple of hours and said he had dropped into our doctor’s as he felt something was not right with Frankie.
The GP agreed, suspecting a case of pneumonia. She sent Duncan with a referral letter, requesting chest X-rays and blood tests up to our local hospital where my sister and I met him and the girls.
After examining Frankie and administering her with Panadol and Ventolin, her condition seemed to improve, and we were sent home. Without X-rays or blood tests. We felt uneasy. Our gut said all was not right, but we also wanted to trust the doctor’s opinion.
Frankie had a pretty restless night. By mid-morning, however, Frankie became extremely listless. Her temperature soared quickly, and Duncan called the At-Home doctor service.
The doctor arrived, took one look at our baby and called an ambulance. We were taken straight to the children’s hospital.
There we were listened to, and tests were carried out. We were told late that afternoon that Frankie did have pneumonia. Initially, we were relieved – we had a diagnosis finally and our baby could be treated. We could get on with the business of getting her well.
The doctors said they were running a couple of other tests though and they would come back to us. That awful feeling in the pit of our stomachs was back.
A few hours later, a new face came into our room. The doctor was an oncologist – she had been called in to review Frankie’s blood work. It confirmed the ER doctor’s suspicions.
Our baby girl had leukemia.
There are two main types of leukemia we were told. One was more favourable than the other, had a much better survival rate and generally responded better to chemotherapy. That type of leukemia is ALL (Acute Lymphoblastic Leukaemia). It is the most common type of childhood leukemia.
Unfortunately, Frankie had the worst kind – Acute Myeloid Leukaemia. AML is fast-acting and often fatal. Our perfectly imperfect life was over.
This was a new chapter, and so began our nightmare. February 21st, 2017 – we will never forget that day.
We shared the awful news of Frankie’s diagnosis with friends and family. Those closest to us had ringside seats to our journey through 2016. We started ‘Frankie’s fight against AML’ facebook page to keep our concerned friends and family up to date with our baby’s progress.
Frankie turned three towards the end of her first round of chemo. She celebrated her birthday hooked up to an IV pole with a special visit from her sister, the usual abundance of presents and cake.
After two rounds of chemo, leukemia cells remained in Frankie’s body, and a bone marrow transplant was her only option for survival.
Another blow to the heart.
A worldwide search for a bone marrow donor turned up empty. There was no one in the world on the register who matched Frankie. This was a devastating blow.
However, the second stage of the search led to a search for cord blood banks. A 9 out of 10 match was found in Sydney. Some wonderful mother had donated her baby boy’s cord blood at birth.
The transplant date was set for May, and all our hopes for our child were pinned on a successful transplant.
But it wasn’t to be. A procedure that saves so many lives that held the promise of hope wasn’t enough. The transplant process is horrific. To allow a new immune system to take hold in Frankie’s body, the drugs administered wholly stripped her of any immunity she had.
She was brought to the brink.
But Frankie amazed the doctors time and time again by recovering from the viruses attacking her system.
For six months following her transplant, we lived in the hospital with our girl. Willing her to get better. Our amazing doctors and nurses tried many treatments and protocols to save Frankie’s life.
Eventually, our little warrior was too tired to fight anymore. After a two month stay in intensive care, Frankie’s heart and lungs and kidneys succumbed to a virus that could not be controlled by the numerous drugs being used to treat her.
As Duncan and I held our baby girl in our arms, Frankie slowly and peacefully passed away on November 4th, 2016.
No one but Duncan and I knew how Frankie lived through her chemotherapy and subsequent stem cell transplant.
We sat through each day with her, every awful and painful procedure, every dressing change, every blood transfusion, every needle and cannula, every anaesthetic, every operation, every vomit, and blood-soaked nappy change, every push of the emergency call button, and every visit to intensive care.
We looked into our baby’s eyes every time and saw her pain and confusion about why she was suffering.
But what bothers me the most is that even her daddy and I, who loved her more than anyone in the whole world, couldn’t take away her pain and fear. We did our best, but there were pain and suffering.
And then, there was death. Yet, Frankie’s death is not uncommon.
Around 50 children are diagnosed with AML in Australia each year. Survival rates are poor. Many of these children die.
Their deaths are because the amazing medical scientists trying to find a cure or at least, better treatments for paediatric cancers and specifically, blood cancer, do not have enough funding.
Adult research gets roughly 96% of the government funds allocated.
When one of these gorgeous children dies (which happens every week without fail) often the gut-wrenching post written by a grief-stricken mother goes viral. The post is shared and read by 100,000’s of people.
They often cry and comment and tag their friends and pledge to hold their children close because they are #soblesssed and #grateful, etc., etc.
For most people, that is the end of their reaction to the story. They shed tears and then move on with their day. I understand that. I used to be one of those people. I used to cry, say I couldn’t comprehend the depths of that mother’s pain and then thank god I didn’t know that pain until it was me.
Until it was MY daughter. Until it was MY family suffering through something so horrendous there are hours and days I’m sure I’ve blocked out of my mind because it is simply too hard to relive them.
So I wonder if this post could go viral? I wonder if it could inspire everyone who sees it do something small to try and save our children who are dying.
You could give blood and do it regularly; you could go on the bone marrow registry to save the life of someone who needs a transplant.
You could donate to the research foundations and leukaemia foundations rather than buying an extra coffee this week.
My daughter Frankie was beyond amazing. She suffered things you and I would not cope with. And mostly all with a smile.
In the hour before she died, she managed to open her eyes to greet each of her grandparents, aunts, and uncles as they made a mercy dash to farewell their little hero.
She smiled gently for her mummy and daddy as she lay in our arms, her breathing slowing. I held her tight and whispered in her ear that it was ok, she had fought so, so hard and it was ok for her to let go.
Imagine that. Imagine telling your child it was ok for them to stop fighting. Ok for them to die. It isn’t ok. It never will be.
But I couldn’t bear for her to think she had to fight anymore. I wanted her to slip away peacefully to a place where she was free of pain.
What will you do today to try and prevent that from happening to your family, your child, or someone you love? How will you contribute?