“I held her tight and whispered in her ear that it was ok. It was ok for her to let go.”

Video by MWN

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 to 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. In fact, she often favoured the company of her uncles and grandfathers over the women in our family, much to everyone’s amusement.

"My gorgeous girl was the completion to our family." (Image: Supplied)

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 and 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 in 2015, we returned home to Brisbane to 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 made a comment about how ‘on the go’ Frankie was. The next week, her teacher commented on the bruise still being there. Week three – 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 doctors 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 two year old.

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Frankie’s antibiotics seemed to improve her condition for the week but as soon as the course was finished, she was flat again.

Our GP suspected a case of pneumonia, and sent my partner 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 in fact have pneumonia. Initially we were relieved – we had a diagnosis, finally and our baby could be treated and 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.

Frankie on the day she was first diagnosed with AML. (Image: Supplied)

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 leukaemia.

There are two main types of leukaemia 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 leukaemia is ALL (Acute Lymphoblastic Leukaemia). It is the most common type of childhood leukaemia. 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 2016 – we will never forget that day.

We shared the awful news of Frankie’s diagnosis with friends and family. Those closest to us had ring side 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, leukaemia 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 of cord blood banks. A nine 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.

Frankie with her sister Millie during chemo. (Image: Supplied)

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 completely stripped her of any immunity she had. She was taken to the brink. But Frankie amazed doctors time and time again by recovering from the viruses attacking her system. For six months following her transplant, we lived in 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 though 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 really 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, 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 was 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 per cent of the government funds allocated.

When one of these gorgeous children dies (which happens each and every week without fail) often the gut wrenching post written by a grief-stricken mother goes viral. The post is shared and read by hundreds of thousands of people. They often cry and comment and tag their friends and pledge to hold their own children close because they are #soblesssed and #grateful.

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.

I wonder if we could make action viral. I wonder if it could inspire everyone who sees it to 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 and painlessly 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?

To donate to the Leukaemia Foundation, click here.

To join Frankie's Fight, follow the group on Facebook here.

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