Sarah Weir shares from her blog Pray 4 Evie, a journaling project she took up in 2013 when her two year old daughter was diagnosed with neuroblastoma.
“I have always been an avid journal writer,” said Sarah. “I find it therapeutic and enjoy having an outlet to express emotions, fears, excitement and dreams.”
“I started Pray 4 Evie in the hope that it would encourage, help and inspire others, especially those in a similar situation,” Sarah said. “And also to share a little glimpse of our story with so many who have been praying for Evie.”
Six-year-old Evie passed away in December 2017 leaving the family to experience a heartbreaking year of ‘firsts’. The first family holiday without Evie, her first birthday, and more recently, the first Childhood Cancer Awareness Month without the little girl who mum, dad and big sister were advocating so desperately for.
As September 2018 came to a close, Sarah was prompted to share some of the harsh truths about childhood cancer.
“I always tried to be positive while Evie was going through treatment, particularly with my posts, but the past five years have been hard. And life will continue to be hard without her,” said Sarah.
“Before Evie was diagnosed, I was not aware, I did not even ever imagine what it would be like to have a child with cancer - it just never crossed my mind.”
“However, now painfully aware, I wish I only had to ‘just imagine’. I wish I hadn’t lived through it, but I have, I did and will continue to.”
“Although this might be a hard read, I hope it helps to spread awareness of childhood cancer and just a little of how it affects families that do have to live it,” Sarah said.
Just imagine your child has been sick, you’ve taken them to the doctor and been told it’s just a virus, but they aren’t getting better and you know that something’s not right. So, even though you feel like a paranoid parent, you keep taking them, and land up in the hospital for fluids and overnight observations. Imagine your child being transferred by ambulance to another hospital and after a long night spent in Emergency, your child is put under anaesthetic for a CT scan. Imagine on the way back to the ward, you are pulled aside and whisked into another room, and the door is shut behind you and you sit on the lounge chair, your heart thumping wildly as you wonder why you are there.
Just imagine being told that the scan shows that your child has a tumour. Your world crashing around you as you desperately try to comprehend the words you are hearing and your body goes in to shock. Time slows down, but your mind is going at a million miles an hour. Imagine after a week of scans, blood tests, bone marrow biopsies and a central line inserted, you are taken back into that little room you now hate, to be told by her Oncologist that your child has stage 4 neuroblastoma, and will begin a gruelling 14 - 18 month treatment of chemo, surgery, a bone marrow transplant, radiation, and immunotherapy. Imagine being moved to the Oncology ward and spending that first night, the night before treatment begins, completely terrified.
Just imagine nurses coming in to the room with protective gowns, gloves and masks as they hang up that first bag of chemo.
Imagine sitting next to your baby as poison is literally going into their body, feeling helpless and scared and only being able to hold their hand.
Imagine having to wear gloves to change your baby’s nappy to protect you from the toxicity that is literally running through their veins, through their body. Imagine your child losing their hair for the first time. Then the second, then the third. Imagine finding it all over their pillow. Imagine your child beginning to vomit and not be able to eat due to mouth ulcers from the chemo. Imagine their blood counts becoming so low that they have to have blood transfusions and stay away from people so they don’t pick up a bug that their body cannot fight.
Just imagine having to walk away from your child as they take them in for major surgery. Kissing their forehead and leaving them in the hands of a surgeon as you helplessly wait. Knowing their little body is being cut open, and they are lying on that operating table alone.
Just imagine your child getting a fever and instead of being able to give them Panadol and put them to bed, you have to drop everything and head in to Emergency. Imagine sleeping on a chair in the Emergency Department because there are no beds on the ward. Imagine not knowing how long the stay in hospital will be, as you wait for blood cultures to come back.
Just imagine having to watch your child lie still in a scan for over an hour and a half. Imagine feeling sick as you hope with everything within you that the scan results are good. Imagine having to agonisingly wait for those results the following day, or even sometimes up to a week.
Just imagine, being told before each new treatment that there are possible side effects. Things like that it could be more likely to cause a secondary cancer down the track, potential hearing loss, infertility, learning difficulties, problems with organs, but you have no choice…
Just imagine your child is in so much pain from a treatment that they are writhing in pain and have to be put on continuous morphine and ketamine. Imagine their heart rate is so high as a side effect of the treatment that rapid response team is called and have to decide what to do and whether they need to go to ICU. Imagine they become so sick from chemo that they cannot eat for weeks and have to be fed through a nasal gastric feeding tube, dripping it in ever so slowly so their stomach can handle it.
Just imagine your child being on a dose of steroids that causes them to constantly want to eat, and only eat carbs or unhealthy food.
Imagine them becoming angry and yelling at their sister or brother, or throwing things across the room. Totally transformed in to a different child than you normally have. Imagine being in tears because you feel like this is not your child, and you are embarrassed about their behaviour, or feel terrible about the food they are consuming.
Just imagine, thinking you were finally finished and your child had made it through treatment and was now cancer free, only to be thrust back into the hospital when a scheduled scan shows the cancer has returned. Imagine not knowing what the future holds and what the options are going to be. Imagine knowing that the chances of your child surviving have just plummeted, but you can’t give up hope.
Just imagine, your other child or children have to watch their siblings become sick, have to stay in hospital, having to have their mum or dad away in hospital. Imagine them feeling uncertain or scared about what’s happening. Imagine them wishing they were sick so that they could be with Mummy or get presents. Imagine them feeling scared every time there is a scan, as they await results.
Just imagine, after a long fight, you are told there are no more treatment options, and the cancer is now spreading.
Imagine your child’s Oncologist apologising to you with tears in their eyes, as they say how sorry they are, how they tried. Imagine knowing you have limited time with your child, and your heart breaks as you realise that the very thing you were scared of when you first heard the words that your child had cancer, is now staring you down as your reality.
Just Imagine, meeting the Palliative Care team that will now be in charge of the care of your child. Who will try and keep her as comfortable as possible and help you manage her pain so you can stay out of hospital. Imagine them talking to you about things you never dreamt you would have to think about for your child. Imagine feeling scared, lonely, terrified and heart broken, but at the same time wanting to enjoy the time you have together as a family, wondering if everything will be the ‘last’.
Just imagine watching your beautiful child in pain and their health starting to deteriorate.
Imagine them waking in the night, and having to give them regular drugs like OxyContin and steroids to keep on top of the pain. Imagine them getting pins and needles in their hand, and then eventually losing the ability to write or colour-in. Imagine them sleeping a lot, firstly because of all the medication they are on, and then eventually because their body is shutting down. Imagine them trying desperately to tell you something, but they can’t get the words out. Imagine them still trying to smile, but they don’t have the energy or the ability to any more.
Just imagine cuddling your child and watching them take their last breath. Imagine kissing their face and trying to drink in everything about them. Imagine having to say goodbye for the final time to your precious baby. Hoping they knew how much they were loved, how hard you tried, and how much they will be missed. Imagine having to live every day without them, and wondering why it was them. Why most other people get to enjoy their lives with their kids. Imagine every day feeling an ache and your heart literally hurting as you try to learn to live without them.
Just imagine we lived in a world where no one had to imagine any of this, because there is a cure for cancer.
Imagine that it was as simple as a vaccination or tablet, and that is it. Cured. Imagine the day when childhood cancer doesn’t destroy families lives, doesn’t take lives of precious children or leave them devastated with side effects. That’s what I want to imagine. That’s a world I want to live in. Until then, I will raise funds and awareness so that, hopefully, I can see the day where there is a cure.
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