The story of #believeforchloe

If you've come to this blog through my twitter account, then you will probably have at least a vague idea of what #believeforchloe is all about.

For those who don't know, here is the story.

I know this gorgeous girl, Chloe, who is three years my junior. She and my sister used to dance together, which is how Chloe and I know each other.

At the beginning of 2013, aged 13, Chloe started to get unwell. At first it was just some minor headaches and nausea. Her mum, Lee-Ann, assumed it was the flu, kept Chloe home from school for a couple of days, and then sent her on her way.

However, these symptoms gradually started to get worse, and began to be accompanied by new symptoms. The headaches were intensifying and becoming more frequent. Lee-Ann slowly realised that what she had at first thought was Chloe faking to stay home from school seemed to be the sign of something actually being wrong. She took Chloe to a pediatrician, who diagnosed Chloe with migraines, something which Chloe's younger brother suffers from occasionally.

Come June, Chloe couldn't function. She was violently vomiting, most often in the morning, was struggling against blinding chronic headaches, had no appetite, and couldn't walk properly. Yet the only answers the next few doctors gave her was 'puberty', 'C2 neck joint inflammation', and migraines again.

On August 4th, after Chloe had endured eight months of hellish illness, Lee-Ann took Chloe to Joondalup Health Campus. The radiologists there did an MRI of Chloe's head. This MRI did not develop properly but it developed enough for the radiologists to see that Chloe needed to be rescanned. Instead of doing it there, they told Lee-Ann to take Chloe to Princess Margaret Hospital for Children, and they would call ahead to let the radiology department know she was coming.

Around mid afternoon, Chloe arrived at PMH and was taken straight up for another scan. This MRI was much clearer, and gave them the answer as to what had been making Chloe so sick.

At the back of her brain, buried in her cerebellum, right on her brain stem, was a 5 centimetre tumor.


(Note: this is NOT Chloe's MRI. This is merely an example of what a medulloblastoma tumor is and where it grows)

The doctors at PMH only had to look at the scan once to know that they were dealing with a case of medulloblastoma, an aggressive brain cancer that is the most common type of brain tumor in children. The next morning, they inserted an EVP drain to regulate the spinal fluid in Chloe's head. This was done because the tumor was blocking the fourth ventricle of Chloe's brain, the ventricle that filters the spinal fluid from the skull to the spinal column. This drain left a permanent divot in Chloe's skull, which will become invisible when the hair on top of her head decides to grow back.

Two days after diagnosis, Chloe had the tumor removed. Because it was on her brain stem, she had to completely learn how to walk again.

Throughout October and November, Chloe underwent 31 rounds of high dose radiation and 30 rounds of low dose chemotherapy. Her hair fell out, her weight dropped dangerously low, her platelets bounced from low to high to low again, and she threw up everything that went into her stomach. She also suffered painful radiation burns, both internally and externally.

From December through to May, Chloe endured six rounds of gruelling high dose chemotherapy. Chemo made her so sick that her NG tube had to be changed to an NJ tube, as her stomach just couldn't tolerate anything in it. She remained on NJ tubes until the weekend before her final chemo, which was on May 22, 2014.

In July this year, Chloe was declared cancer free. As of today, she remains cancer free. She is back at school, and is looking healthy and happy. She is walking with crutches and should be walking independently by Christmas.

#believeforchloe was all about rallying support from Chloe, and boy oh boy, she got a lot of support. We created a birthday book filled with messages from all over the world, which she LOVED. Now, #believeforchloe is about keeping people updated on how Chloe is doing, and is all about raising awareness of childhood cancer and how we can make a difference.

You can too. Take a stand.


Update - 5.11.14.
Chloe received the results of her 3 month scans today. Her brain is clear and remains NED (No Evidence of Disease). However, there is a 3mm round spot on her L2 (2nd lumbar vertebrae) that could either be nerve endings or a tumor. Chloe's spine has not been thoroughly scanned before (despite brain cancers being nefarious for spreading to the spine, it isn't protocol).


(8 is the tailbone, for reference. Again, this is NOT Chloe's MRI)

Chloe is scared. She has to wait six weeks to find out if the cancer is still there. Please keep her in your thoughts and prayers.