During 2021 and the Covid pandemic Akemi started to experience what was referred to as drop attacks. These are a sudden fall to the ground without warning or loss of consciousness, followed by quick recovery.
Within the space of a day, Akemi had experienced numerous episodes of 2-3 second top to bottom collapses.
Each time she was coherent, but we had a referral made after Akemi had experienced a severe burn from a hot drink during one episode.
The referrals didn’t amount to much: questions, appointments, but no answers. Neurologically Akemi was presenting well.
In 2023, after being within the epilepsy clinic for 2 years. Akemi’s episodes had increased from 2-3 seconds to 25-30. She would have to sit on the floor or stay seated until they passed.
We attended an appointment in January to discuss things further and I refused to leave the department until I had answers.
The same tests had been performed time and time again. With the same inconclusive results!
By this time Akemi’s life had dramatically changed. Most things that Akemi lived for and enjoyed doing she was unable to participate in, as the episodes were causing her harm. She was falling and injuring herself more regularly.
Not being taken seriously by clinicians and professional was upsetting and by 2024 I wouldn’t accept no for an answer. I requested an MRI as I couldn’t understand why they hadn’t even checked Akemi’s brain.
On the 16th of March 2024, Akemi was presented for her scan. Nothing was said on the day and we returned home.
On the 19th of March, I received a call. We were requested to attend the children’s ward locally to us, with Akemi.
At this time my occupation was within the medical sector as an ambulance emergency care assistant. I was training to become a technician and then on to paramedic. So I understood a phone call asking us to come in meant something more, and I demanded to be told over the phone.
I was informed Akemi had a lump. It had been located on the scan in her medulla. Akemi’s tumour was totally encapsulated in her medulla oblongata. It was not a lump as described by the original consultant, it is a mass – that measures 2.5cm by 2.6cm.
At this point we were not in disbelief, as the past few years had strongly indicated something wasn’t right. Akemi had become so unwell, her balance and gait was staggered. She barely moved, and when she went to take hold of anything her grip was that of a feather. We knew something had been wrong all along. That day is imprinted so deeply within our memories.
Our time after diagnosis was a whirlwind! Everyone needed to see Akemi. Our local hospital was so apologetic.
Akemi commenced chemotherapy in April 2024 – she managed one fictional round of Carboplatin and vincristine before becoming dangerously neutropenic. A fictional round is where you get chemotherapy and then are given time to recover from the effects before starting a new one. Neutropenic means the body does not have enough neutrophils, a type of white blood cell crucial for fighting infection. Akemi in total had two failed treatments – both a single round. They absolutely flattened her from every angle.
Since treatment Akemi has been in a wheelchair, due to treatment related side effects.
June 2024 – was the last time Akemi had any allopathic intervention (conventional modern medicine). We have pursued more natural and therapeutic interventions for Akemi, which have proved to be beneficial for her.
At the outset, we were informed Akemi had 6-9 months to live at best. Akemi is now 18 months out from diagnosis, and has just celebrated her 11th birthday. Her tumour has stopped growing.
As a family we are incredibly proud of her, her attitude and determination is enviable.
We are grateful to OSCAR’s for the support they have given. This is sometimes as simple as having someone to talk to, or sending a box of gifts tailored to the things she likes to cheer her up. And also sending boxes to her siblings as things have been hard for them too.
On top of that, OSCAR’s have been so helpful in funding occupational therapy for Akemi. To see her go from being wheelchair-bound to beginning to be mobile is amazing and down to their support.
I’m sure you will all agree, she is undeniably such a wilful and strong young lady. She has only viewed this as a set back and not a state of being.
