HELP FIND A CURE

Bella's Story

Brain cancer kills 4 out of 5 people and kills more children than any other disease. But funds to support research will help change these awful statistics and Bella the Brave wants to help play a part in this.

Bella’s Story

Strap in, because this is a long one…
It was just before Bella’s first birthday that we got an inkling there was something wrong. She was irritable, not eating much, sleeping poorly and very clingy. Fairly common issues, right, for a one year old? So it is not a surprise I guess that the child health nurse I saw and her GP weren’t overly concerned and initially neither were we. That is until I went to lift her out of her cot one morning and I noticed she was shaking. Again, I took her to the GP who again couldn’t find anything wrong and told me to come back in a couple of days if she didn’t improve.

I wasn’t convinced by this and decided to take Bella to the hospital. I didn’t get anywhere there either with the paediatrician giving me the distinct impression that she thought I was just being a neurotic first-time mother. I took Bella home but my mother’s tuition was telling me that this was not nothing. That night Bella began having trouble sitting up and crawling. She was also becoming increasingly distressed. I took her back to the hospital first thing in the morning and insisted, very strongly I might add, that she be admitted for observation at the very least. Things moved swiftly from there.

Once the paediatrician on the ward watched Bella’s movements a head ultrasound was ordered. This showed that Bella had a cyst in her brain. Bella and I were on a plane to Brisbane that night with the Royal Flying Doctor’s Service. This was the last day of our normal life. The 1st of September 2016.
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Friday the 2nd of September and the week that followed was a parent’s worst nightmare. I cannot in words convey the devastation and depths of despair that we experienced. Bella had an MRI that morning. She was only supposed to be gone half an hour. After an hour I was inconsolable. I knew something was dreadfully wrong. Finally after an hour and a half the neurosurgeon arrived. He crouched down in front of us so that he was at eye level. My heart sank. I knew my instincts were right and I was terrified about what he was going to say. These words are now forever seared in my memory. He said “I’m very sorry but the scan showed us something we weren’t expecting. Bella has a very large abnormality in her brain.” He told us that this abnormality affected almost the entire left side of her brain. He told us that her brain was under an extreme amount of pressure and was being squashed to the right hand side. He told us that he needed to take Bella away immediately for surgery to do a biopsy and to drain some of the fluid to reduce the amount of pressure. And that was that. As quickly as he arrived he left, leaving us reeling.
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Things went from bad to worse after that. Bella didn’t wake up after that surgery and no one could explain why. She was transferred to PICU – an acronym for Paediatric Intensive Care Unit so that she could be closely monitored. It is a dreadful place to be and it is place we now know well. I was cuddling Bella the next morning when her neurosurgeon came into review her. At that stage everyone was still using the word ‘abnormality’ when talking to us. No one had mentioned the word cancer. I asked him point blank what he thought the abnormality was and to his credit he answered me frankly. He told me that he thought that Bella had a malignant brain tumour and an aggressive one at that. When he left I hugged Bella and cried and cried and cried.
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Bella had further surgery that afternoon to drain more fluid and thankfully she woke up. We noticed very quickly though that she was not moving her right arm or her right leg. Again no one could explain why. We now understand that Bella suffered a stroke at some point during the biopsy causing the paralysis.
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The next couple of days was a waiting game. Everything seemed to be on hold until the results of the biopsy came through. Our new reality began sinking in and the initial devastation gave way to feelings of optimism and hope. Bella came out of PICU and seemed to be improving. Surely the biopsy would come back and it wouldn’t be that bad. Surely this was something that could be fixed. Surely everything would be okay. We were sadly very wrong.
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On Monday, three days after her biopsy, we were told that the results were back and that Bella’s tumour was an anaplastic ependymoma. Anaplastic ependymoma is a grade 3 malignant brain cancer. There are 3 grades of ependymoma, from grade 1 through to 3. Anaplastic ependymoma is a grade 3. It is the worst form of ependymoma and has the worst prognosis. It is the third most common type of brain cancer in children. Bella’s neurosurgeon told us that Bella would need surgery but that he didn’t think that he would be able to remove all of the tumour. He couldn’t tell us what her prognosis was.
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Bella finished chemo at the end of December 2016 and we spent January trying to fatten her up in preparation for her next surgery in February 2017. Despite the MRI scan showing no evidence of tumour there was an area that remained a concern and Bella’s team wanted to make sure that it was removed. Bella underwent her 5th brain surgery in early February with the neurosurgeon confirming with us that he felt confident he had removed everything.

We were again left devastated, our hope shattered into a million pieces. But time was not on our side to think too much about things. Bella’s condition deteriorated quite quickly over the next 24 hours and she began having seizures. On Wednesday morning, 5 days after her MRI scan, she had a seizure that lasted longer than an hour and resulted in a MET call. A MET call, which we have now endured several times, is an awful experience. An alarm sounds from the room which sends staff from the ward, PICU and emergency literally running into the room. There were about 30 doctors in the room that morning along with a resuscitation trolley. It took an hour and a half to stabilise Bella and stop the seizure. She was taken to PICU and booked for surgery that afternoon.
We were an absolute mess by this point but things were about to get worse. After a very long, awful wait Dr Redmond, her neurosurgeon, came to see us. Bella had pulled through surgery but barely.
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The surgery had to be abandoned due to extensive blood loss. The entire volume of blood in Bella’s body was transfused three times over before she was stabilised. In order to save her life Dr Redmond packed her brain with gauze effectively, left out her skull bone, sewed her up and she was placed in an induced coma. Bella had further surgery two days later to remove the packing in her brain and to put her skull bone back in. On Sunday the 11th September Bella woke up. It was the most amazing moment.
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Her first words were Mama, Daddy and happy. We were overjoyed but Bella was not in great shape. Shortly after she spoke those words she went mute. It was only after Bella went mute that we were told this was a common side effect from the surgery that she had had and that it could be permanent. On top of this she was paralysed down her right side, could not swallow, sit up and was blind to her right side.
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Dr Redmond had only been able to remove approximately 75% of Bella’s tumour. Because of this and because of the malignant nature of the tumour we were advised by her oncologist to do chemotherapy. The aim of the chemotherapy was to reduce the blood flow to the tumour and enable a second look surgery to try to remove it. Without a gross total resection, which is when the tumour is completely removed, Bella’s prognosis was slim.
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Because of the blood brain barrier, chemotherapy drugs provide a limited benefit in brain cancer treatment. Bella’s particular tumour is also known to be resistant to chemotherapy. But this was the only treatment option we were given. Neither Dan or I knew much about chemotherapy but we certainly didn’t expect to be given pamphlets of each drug they wanted to give to Bella detailing pages of side effects. Literally pages, with side effects including infertility, hearing loss, leukemia and secondary cancers just to name a few.
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Despite our misgivings, on the 7th October 2016 Bella had surgery to have a central line put in so she could start chemotherapy. A central line is a catheter of sorts that was placed in the right side of Bella’s chest and went up into her neck and then down to the side of her heart. The central line is then used to administer chemotherapy, take blood and give IV fluids.
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Bella started high dose chemo the day after her central line was put in. She was given 5 different drugs over the course of 2 weeks and then had a 2 week break before starting again. Bella was in isolation for her treatment which meant that she wasn’t allowed to leave the hospital room whilst she was an inpatient. By this time she was crawling and moving around again so keeping her occupied was definitely challenging to say the least. She would bang on the window and try to crawl out the door whenever someone came in. One of the hardest parts of the chemo though was seeing the nurses wearing a gown, gloves, a face shield and glasses when administering the chemo to protect themselves and then watching the bright yellow liquid being injected into our daughter. It just felt wrong.
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Bella sailed through the first round of chemo, struggled with the second and was even worse with the third round. She wouldn’t eat anything but vegemite toast and apple puree. She vomited and vomited and vomited. She needed to be given a sedative to help her sleep. Despite this she was still for the most part cheeky and hard to keep confined in the room.
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After 2 rounds of chemo Bella had a scan which by some miracle showed the tumour had gone. We were urged by her oncologist to continue the chemotherapy which we reluctantly did. We did the third round of chemo and asked for another scan which again showed no evidence of tumour. Her oncologist wanted us to go ahead with the fourth and final round of chemo but we declined. We could not bring ourselves to put her through it again. Bella’s weight by now had dropped to under 10kg, she had received multiple blood transfusions and her immune system was shot. She needed a break.
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It was a relief to know we had gotten through chemo and that second-look surgery had achieved a gross total resection but we then had to deal with the prospect of putting Bella through radiation. 30 fractions of radiation to be exact over 6 weeks, Monday to Friday with Bella being put under a general anaesthetic for each one.

Radiation is generally not recommended for children under the age of 3 because of the detrimental impact to a developing brain. We were advised though that Bella should have radiation because of the aggressive nature of her tumour. In addition to the impact to her neurocognitive abilities and the endocrine problems she would have as she got older we were also told that there was a very high possibility that Bella would end up with radiation induced dementia within a couple of years which would impact upon her short term memory.
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For a little girl that doesn’t have any long term memories because of her age, this again was a devastating blow to deal with. We were urged to go ahead with the radiation despite the risks and despite the fact that even with the radiation there was about a 50% chance the tumour would come back again in any event.
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We struggled to make a decision. How could we go ahead with the radiation knowing that it would likely mean our little girl would no longer be able to remember who she was or who we were? But on the other hand, how could we refuse radiation knowing that it was the only treatment option available to try to keep this insidious disease at bay.

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We ended up declining radiation. We just couldn’t do it to Bella. Given that there was no other treatment that could be offered, we returned home to Gladstone in May 2017 after getting another clear scan.

The elation we felt when we returned home, however, was short lived. Bella’s next scan in early August showed the tumour had returned. We had been told all along by her oncology team that we had one chance at beating this and that if it came back the prospect of good outcome for Bella was greatly diminished. After the initial shock of the situation had worn off, we were quietly confident after discussions with her oncologist that the tumour could be removed relatively easily. How wrong we were…

Bella’s 6th surgery in September 2017 was aborted as her neurosurgeon thought it posed an unacceptable risk to her life if he continued. The tumour was still in there. It was then that we felt the weight of the situation shift against us. During an awful conversation with her oncology team we were told that they didn’t think that they could cure Bella. They told us they could offer radiation but this would just be to buy her time. Go home and make memories they said.

The hardest part of all of this was that Bella was happy and seemingly looked healthy. It seemed so unfair to put her through more treatment when she was doing so well. It was even harder to fathom that this could not be beaten.

So we made the decision to see Dr Charlie Teo in Sydney. Dr Teo saw the scans and was confident he could remove the tumour but warned us if we went ahead Bella might not make it through the surgery.

We agonised over this decision for a couple of weeks – time we didn’t really have because the tumour was growing very quickly. But ultimately we decided we needed to go ahead with the surgery and give Bella the best chance of being able to beat this beast again. On the 23rd  October 2017 Bella underwent her 7th surgery under the hand of Dr Teo. It felt like an eternity. When the call came through on my phone, I was terrified about answering it. But it was fantastic news. Dr Teo had been able to remove the tumour and Bella had made it through surgery. I couldn’t wait to give her a cuddle. Bella bounced back from the surgery so well it was unbelievable. She was moved out of ICU the day after her surgery and was up and about, walking and talking.

Again though it was a situation of 2 steps forward followed by 1 step back as Bella became unresponsive the following day, 2 days after her surgery. She began seizing with her heart rate bouncing between 200 beats per minute down to 50. It took an hour to stabilise her. This was the second MET call we had endured and it was no less frightening. A CT scan showed increased pressure in her brain and so Bella was taken away for emergency surgery to put in a shunt, her 8th brain surgery in 13 months. And in true Bella style, she was again back to her usual self the next morning.

Since her operation with Dr Teo in October 2017, Bella has had clear scans. We count our blessings every day that she is with us. It is not without its challenges though as Bella has a number of long-term and permanent side effects from the cancer and the treatment she had. She has a visual impairment (she is blind to her right side in both eyes), right side weakness / hemiplegia and cognitive impairment. But we know we are luckier than most families and for that we are thankful.

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Aiming for bright future

The 5 year survival rate is just over 20% and hasn’t changed in over 30 years. The funds we raise go straight to support research that helps change these awful statistics, help us create a change for a brighter future for our kids.

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