A loving mother’s last goodbye to her beautiful little girl, Charlie

After eight long years fighting an insidious cancer, Neuroblastoma, little Charlie Carr passed away 10 days ago and was finally laid to rest last Friday. Her devoted and loving mother, Mel, shared the highlights of Charlie’s short life and how she has been enlightened on the toughest of cancer journeys. Following below is Mel’s last goodbye to her darling daughter Charlie, as she shared with us all at Charlie’s funeral.

I remember so clearly, the day Brett and I found out we were expecting a baby girl. Already having a beautiful three and a half year old boy, Tommy, it was a dream come true to be getting a little girl too, the little Charlie girl, that I had always dreamed of.

Another day that is distinct in my mind is Monday 6^th August 2007 as that is the day Brett and I heard the words “your daughter has cancer”.

Just as we could never have prepared ourselves for the extraordinary little Charlie girl we were blessed with, never in a million years can you ever prepare yourself to hear that your precious 8 month old child has cancer.

It was then that the roller coaster ride of childhood cancer began for us. From then on, for the next seven and a half years, we fought hard always with the hope that our ride would have a happy ending. While in many ways it still has, my greatest fear was always that one day we would end up here, where we are today.

A mother should always be blessed with holding her baby when they are born, but never should she have to hold them when they die.

Charlie underwent treatment for her Stage 4 Neuroblastoma (NB) four times during her eight short years. Initially in 2007, and then again with each of her three relapses, in 2011, 2013 and 2014.

In particular, the past four years have been extremely challenging as the Neuroblastoma has been relentless and it is difficult to remember the short times since July 2011 when Charlie was off treatment.

Charlie has endured more cycles of chemotherapy, surgeries, radiation treatments, anaesthetics, scans and admissions to hospital, than you could even care to count. No child should ever have to go through what Charlie has battled once in their lifetime, let alone 4 times, as Charlie did.

As much as all of this has been heartbreaking, anxiety provoking, tiring and at times traumatising, believe it or not, the cancer roller coaster we have ridden has also had a positive impact on our lives.

Although the cancer itself cannot take any credit for this positiveness. As a family we have been constantly supported and uplifted by our family, friends, local community, work colleagues and even strangers, and we have been subject to the best of human kindness.

We have formed some lifelong friendships with some of the other oncology families and have had the immense privilege, through circumstances outside of our control, to be cared for by the exceptional Dr Frank Alvaro and the amazing paediatric oncology and ward J1 team.

People often ask me how I have coped with being the mother of a child with cancer,especially for such a long time, and the answer to that is that I choose to focus on all of these positive aspects to our journey and of course I cope because of my love for Charlie.

Words could never describe the endless love and connection that Charlie and I share.

In a way, the Neuroblastoma that has taken Charlie from me has also helped couple us together in a bond so strong that it can never be weakened or broken, not even by death.

It is for that reason that in my mind the NB has not won. I am not a religious person, and until Charlie came into my life, I was never a very spiritual person, but I have always had this intense feeling that Charlie was sent to me for a reason.

I am a very different person today to the one I was 8 years ago, because in Charlie’s short but very purposeful and enjoyable lifetime she has taught me more about myself than anyone ever has or I believe ever will.

– Through Charlie’s courage I have learned strength.

– Through her determination, she has taught me persistence.

– Charlie’s stubbornness has taught me patience, and through her resilience I have learned that often the outcome depends on your attitude.

– Charlie’s kindness and gentleness has taught me empathy and compassion.

– Her magical imagination has taught me to dream and her limitless sense of humour has allowed me to laugh no matter how hard things got.

– Charlie has taught me that love is the greatest, most treasured emotion and that when love is appreciated and focused you can overcome any obstacle and face your fears.

– Charlie has taught me that we only get one chance at life and that life should be cherished and embraced.

– Charlie has taught me to live life to the fullest.

Believe me there is nothing more frightening, frustrating and challenging than being forced into a situation that you had no choice in and that you can do nothing to change.

Childhood cancer did this to us. It just happened with no warning and no way to have even prevented it from happening.

At around the time of Charlie’s 2nd relapse in 2013, I realised that I had been waiting for normal life to return, and I was getting quite frustrated that normal life kept getting pushed further and further away.

It was then that I came to the difficult realisation that this cancer was part of our normal lives and that I had to do the unthinkable and accept the cancer, to live with fulfilment we had no choice but to accept and live with it.

To be honest over the past two years Charlie’s cancer had become very normal to me. I had managed to fit in the chemo around my work schedule and I no longer unpacked the suitcase we needed for impromptu hospital admissions; I just left it in the corner of the bedroom.

I guess as the years went on the cancer treatments became less of an intruder and sadly, more a routine. Taking Charlie for chemo and blood tests was as routine to me as for another mother taking her daughter to ballet or gymnastics lessons.

My hope though was that choosing to accept the cancer rather than being in constant conflict with it, would help Charlie to accept it also, and to allow her to be less anxious about it and therefore to more happily and fully live the life she deserved.

Charlie not once asked why she had to be the little girl with cancer, and while she did complain about having to go to hospital at times, she always took it in her stride. She didn’t like any of the attention that cancer brought her and she truly didn’t understand why people always told her how amazing she was.

Most of you will know that Charlie loved animals. We jokingly nicknamed our house the Dudley zoo due to the number of animals we have, and let’s face it, who else in Dudley can claim having a horse in their front yard on weekends. One thing we loved about Charlie is that she never wanted to hurt anyone’s feelings and so she would tell you that she loved all her pets equally.

We have so many wonderful memories of Charlie, in fact for every bad cancer related memory, I could give you at least 2 good ones and this is how I kept going.

The highlights I guess were:

1. our 1 month holiday to America in 2011 which was a first for all of us,
2. our snow trip last July, a first for Charlie, Tom and myself
3. Charlie’s Starlight wish to swim with the dolphins and seals in 2013
4. Our recent meet and greet with One D Granted by Make A Wish.
5. And our recent weekend away on a houseboat

Charlie loved to sing and we loved to hear her sing. When Charlie was listening to and singing her favourite songs, she was her most relaxed. Singing and music were therapy to Charlie.

During hospital admissions, the Dr’s and nurses on J1 often commented that they could hear Charlie singing in her room. I remember when Charlie was in hospital for five weeks in 2012 after having her stem cell transplant, after about one week the nurses commented to me that they could tell that Charlie must have been starting to feel unwell because they couldn’t hear her singing anymore, but then at about week four they knew she was improving as they could hear her in her room singing again.

At the very top of Charlie’s list of favourite things were her friends. Charlie absolutely loved and adored her friends and loved a play date. We teasingly called Charlie the play date queen of Dudley and I often joked with her that I had all her friends phone numbers in speed dial on my phone. Charlie’s best friend since age 2 is Charlotte or Char Char as Charlie called her. Charlie loves Charlotte so much and Charlotte has been a beautiful friend to Charlie for the past 6 years.

Being the friendly and kind little girl Charlie was though, she had lots of very special best friends. Mahli, Kienna, the 2 Metisses’s, Aimi, Emma and Layney, along with Charlotte were regulars at our house for weekday play dates and weekend sleepovers. There was rarely a day when Charlie didn’t have a friend at our house for a play date and if she happened to have chemo often any one of these little friends would go with her to keep her company.

One of the many things I loved most about Charlie was her acceptance of herself. Biopsy surgery in 2011 left Charlie with an obviously large scar around her right eye and a very badly turned right eye, and as the result of chemo, she had a bald head in 2011, 2012, and 2015; yet she never really let these physical differences worry her.

I believe that Charlie’s naturally kind and empathetic personality helped Charlie accept herself with her differences, just as she would never highlight or make fun of anybody else’s differences.

I also believe however that Charlie’s friends and whole school community helped Charlie to feel “normal” for sake of a better word. Charlie was accepted just as she was and she never came home complaining that a kid at school had picked on her. In fact I remember that after Charlie had her eye correction surgery, one of her little friends Matisse said to Charlie, Your eye looks great but you’re not the same cute little Charlie with your turned eye anymore!

I remember when Charlie started kindy in May of 2012, she had not long finished treatment and had a bald head. Being cold weather and me being a concerned mum, I asked the school if Charlie could wear a black beanie to school to protect her head from the cold. Charlie however was worried that wearing a beanie would make her different from all the other kids, cause to Charlie her bald head was normal. The school not only agreed to let Charlie wear a beanie, but due to her concerns about looking different they let the whole school join in and wear beanies as part of their winter uniform that year just so Charlie wouldn’t feel different from the other kids.

Our beautiful little girl has certainly captured the heart of this community and she has inspired us all. Certainly I think the lessons we can all learn from Charlie are to:

• Live life. Be thankful for every day, find a positive in every day and smile and laugh every day despite the difficulties as Charlie could do this even on her worst days.
• Do what makes you happy and never be afraid to dream
• Love and cherish your family and dearest friends
• Accept yourself just as you are and be accepting of others as they are
• Love your children deeply, cuddle and kiss them often and tell them you love them often

Since leaving the hospital last week, people have asked me how I managed to cope with being in palliative care with Char 24/7 for almost four weeks. The only way that I can explain this is that as colossal as my heartbreak, fear, anxiety and sadness was, my love for Charlie is so much greater than any of these other emotions, and that’s how I got through it.

Sometimes people have said to me that we are really unlucky people, and to be honest this does not really sit that well with me.

Yes it is unlucky to have a child with cancer, and yes it is unlucky to have her relapse three times, and it is the worst thing that life can ever throw at you to lose a child: but the way I look at it, we are very lucky people, as not too many people are blessed and honoured with having a Charlie in their lives. Charlie was an extraordinary little girl, with a beautiful soul, who enriched our lives with so much, and for that reason, we are extremely lucky people.

During this past week, since Charlie passed away, I have been thinking about the age old question “Is it better to have loved and lost, or to never have loved at all?”

I can tell you with certainty that for me personally, it is definitely better to have loved. And of course we never want to lose those we love, especially a child, and I would give anything to have Charlie back, but I feel so privileged to have had this beautiful soul in my life, even if it was only for eight years.

This was a shock to Tom and I cannot tell you how devastating it was to watch Tom’s reaction to this news. We placed a huge responsibility on Tom’s shoulders, to know that Charlie was going to die, but to not let her know.  For a 12 year old kid with a broken heart to know he is about to lose, in Toms words “his best friend”, and to be able to be with Charlie in Palliative care and act normal around her was amazing and courageous in itself.

Finally, to the NB that took my baby. Charlie, with her innocence, once called you the cheekiest cancer, because you kept coming back. I, however, have lots of words to describe you and cheeky is certainly not one of them.

You need to know Neuroblastoma that due to the immeasurable imprint Charlie has left on the hearts of all of us, because of the love she has instilled in all of us, and because of the lessons she has taught us all, you have not won. You already know that I hate you Neuroblastoma, and you also need to know that this is not the end.

My vow to my Charlie is that I will join all the other grieving mothers with NB angels in their fundraising missions to assist the researchers in finding a cure to you. I know this would mean the world to Charlie as she would never want to see another child have to endure what she did.

by Melissa Carr