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Chloe's Story

by Lee-Ann Clements - Chloe's Mum

Chloe began experiencing headaches & neck pain in 2012. As she was a National level gymnast & dancer, we assumed it was due to an injury. We had many appointments with the Physiotherapist, the Chiropractor, a Sports dr & an Osteopath.  The GP took blood to test for certain things. Nothing showed up. Chloe began to vomit, lose her vision & her ability to walk. It was at this stage we insisted on seeing a Paediatrician. The Pead sent us for an MRI, unknown to me at this stage, he knew exactly what we were dealing with.

The MRI was performed on the 4th August 2013. The Radiographer suggested we go directly to PMH as he had found an abnormality which he said could have been because of her braces. Once at PMH my husband & I were taken to a separate room & told the words I’ll never forget “Guys, your daughter has a brain tumour” just devastating. People talk about their worst nightmare being a spider in the car, or forgetting plane tix etc. THIS is any parents worst nightmare.

We were transferred to ward 5A where we were to spend the next three weeks.

The next day Chloe had an EVD – external ventricular drain, inserted into her brain which drained the built up fluid. The fluid, caused by the tumour blocking the pathway between the brain & the spine caused Hydrocephalus which was causing the excruciating headaches. How was this kid still flipping & twisting at dancing?? The Neurologist said if we had waited just three months more, she’d have been dead.

The very next day, Chloe went into surgery for the toughest surgery of her life. Five hours later the tumour had been 98% removed. This was a great outcome.

17 hours in PICU & Chloe was taken back to the ward to recover.

Chloe needed to learn to walk again as the surgery had caused a paralysis called Posterior Fossa Syndrome. This affected her entire left side, which meant Chloe didn’t just have to learn to walk again, she had to learn to use her left hand, move/eat/talk/kiss with the left side of her mouth & focus with her left eye. She also needed to have the EVD removed as well as all her stitches. The EVD removal required Chloe having a stitch put in her head. She would have needed a local to do the stitch. Chloe, being the superhero she is, said “If you have to do a needle in my head before you do a stitch, just do the stitch” Far out! If I didn’t know before this (which I did) I learned then how tough & strong this little girl was.

Chloe left hospital just after two weeks post surgery. This was unheard of. Usually it took six weeks. The PMH physios decided because of the gymnastics training, her body knew what it needed to do.

On the 26th August, Chloe was admitted to ward 3B – our new home, also known as the oncology ward. Kids with cancer ward. Chloe had surgery number 3 to insert an infuser port into her chest wall. This port was going to be the device that delivered any & all drugs & blood products into Chloe’s blood stream over the next 11 months. Nurses would “needle” this port with a semi permanent needle device that would remain taped down for the extended amount of time Chloe would need it.

September 2nd 2013 was Chloes first day of Chemo & radiation. Chloe would have a cocktail of chemotherapy drugs from here on. Vincristine every Monday for six weeks, plus Carboplatin daily, Monday to Friday for six weeks. An hour after Carbo was administered we would drive to Charles Gardiner Cancer centre where Chloe would have Radiotherapy. The side effects were horrendous – burns on her skin where she was radiated which included her full skull & spine & throat. Burns on the inside of her throat & stomach & severe tiredness. After the first two weeks, Chloes hair started to fall out. So devastating for a 14 year old girl. Chloe, brave & courageous, opted to just shave it off. Chloe lost the ability to walk & was in a wheelchair after about three weeks due to Vincristine – it causes foot neuropathy or foot drop which is weakening of the muscles in the lower legs & feet. Chloe spent time frequently as an inpatient in 3b during radio as it is harsh, very harsh.

After this phase one was finished, Chloe had six weeks break. During that break, Chloe spent most of the time in hospital, very sick. This was the “easy” phase. Apparently.

November 17th 2013 was when round one of the “harsh” phase started. Every month Chloe would be admitted to 3b to have Vincristine, Cyclophosphamide & Cistplatin administered IV (through her port). This would take three to four days plus an extra day to make sure she was ok. Chloe would vomit usually five or six times a day while having chemo & for the two weeks afterwards. She’d have one “good” week where she didn’t vomit but was extremely nauseas then the next round would begin. It used to amuse me – the drugs she was on to counteract the drugs she was on which were counteracting the drugs she was on! At one point in her treatment she was on 14 different drugs, twice a day! That doesn’t include the mouth care medication (three different medications). Then there was the IV/oral narcotics for pain – cos kids need Ketamine & Morphine! Right?

Back in October 2013, Chloe had a Nasal Gastric Tube inserted into her nose as she was losing weight as she was unable to eat or drink at all – this would cause major issues down the track. This tube only lasted a week before she vomited it up. A Nasal Duodenum tube was inserted – this was a tube put in under xray & went directly into her intestine to avoid vomiting, however, it meant the feed had to be run at a very slow rate, 24 hours a day.

While having radio & chemo over the 11 months, Chloe had 78 blood & platelet transfusions. Without these, she wouldn’t have survived. Blood transfusions were fine although they took longer than two hours each time but the platelet transfusions were awful. The second one Chloe had caused a severe allergic reaction which caused her eyes to swell to the point she couldn’t see. It was decided she would require a strong antihistamine & a sedative before future transfusions. This meant Chloe was put to sleep 35 times to have these transfusions. Round two of chemo was due to start on the 24th December. Thanks to her blood counts being too low, it was put off till the 27th December which meant we could have Christmas at home.

Round three was also delayed, in fact, all the rounds were. Low neutrophils meant Chloe was prone to picking up any & every bug going around, which meant she couldn’t go shopping, or to the movies, or to footy or anywhere were there were crowds. It also meant her sister & brother had to stay away much of the time. Chloe was isolated from everyone she loved, except me & the other “Cancer kids”

After Chloe finished treatment on the 28th May  2014, she became very sick. In fact, sicker than she had been in the past 11 months. It turned out Chloe had double septicaemia due to her port becoming infected. Chloes blood pressure was scarily low & she was rushed to PICU. There’s a train of thought in 3b that if your child gets rushed to PICU, they generally don’t come back. It’s usually the beginning of the end. We were terrified.

Chloe was given Adrenalin & watched like a hawk that first night. The next morning was surgery number 4, to remove her port. Later that day after surgery, Chloe couldn’t breathe. She was put on high flow o2 & had almost every Medical team in the hospital come & assess her. Xrays initially showed she had pneumonia (this is a major killer of immuocomprimised kids like cancer kids), but true to form, Chloe changed the diagnosis by sheer determination to the lesser diagnosis of Adult Respiratory distress syndrome. This still required extremely strong antibiotics IV & PICU care. After five days she was put back on the ward. Two days later she got rid of the high flow o2.

Then came the next issue – the one caused by being NJ tube fed for nine months. Chloe had a bowel issue called Typhalitus – a necrotic bowel disease. This was caused partly by the tube feeding but also by a disease she had regularly through treatment called C difficile. C.diff is caused by the ridiculous amounts of antibiotics cancer kids need to take.

Three weeks later, after the initial double septicaemia, Chloe was finally discharged from 3b for the very last time.

Chloe was in a wheelchair until September 2014 when we took her to Bali for her birthday. She was determined to walk around Bali. The 3B Physio at PMH had faith in Chloe & gave her a set of crutches. That was it! Chloe left that wheel chair behind & used her crutches to help her walk.

By December, Chloe was walking without crutches – completely on her own.

Chloe is running, jumping, bike riding, DANCING & even cart wheeling again.

Chloe has to have MRI scans every three months to make sure the tumour hasn’t regrown. It’s tough & it’s scary, terrifying waiting for scans & waiting for the Oncologist to tell us she still in remission. It’s 15 months remission now. Chloe won’t be classed as cured until May 2024.

Chloe has lost a lot of friends since she was diagnosed – 18 actually. How many 15 year olds know 18 people their age & younger who have gained their angel wings? Not many. Chloe lost a very very special friend, her soul mate. She’ll never get over his loss.

Chloe (& I) have made some amazing friends. One of her best friends is a girl we met in 3b. Their connection is more than just cancer. Her mum & I are the greatest of friends also.

There are many memories, some good, some sad, some maddening. Chloe has dedicated herself to raising awareness of Childhood cancer by working with Go Gold Australia & also to raising funds with her work with The Telethon Adventurers.

Our next scan is 3rd September. We get the results on the 9th September.

We’re nervous, but we need to remember #cancerdoesntlivehereanymore