In little brainstrust, Patient story

Oliver’s loving family have shared the story of their precious little boy Oliver, who was diagnosed with a brain tumour. Despite the tragedy of his story, Oliver was the smiliest, happiest and most courageous little boy.

☆OLIVERS STORY☆

On the 15th December 2019 Oliver presented with ‘sunset eyes’ (as we now know it).

Unsettled by the issues with his eyes, we took Oliver to A&E. After being told by 2 doctors that there didn’t seem to be anything untoward, the 3rd triage doctor sent us to see the pediatric doctor. He took one look at Oliver and said that he wasn’t happy with what Oliver was presenting with, and booked him in for an MRI the next morning.

Oliver was diagnosed with a brain tumour on the 16th December 2019 at just 16 weeks old. Oliver had a full resection on the 19th December, to remove the the tumour, and was in theatre for 11.5 hours. This took place in Bristol Hospital for Children. Following the surgery, Oliver experienced some horrific seizures and after being heavily sedated for 12 hours, fortunately the seizures stopped. Oliver then was diagnosed with diabetes insipidus and was injected twice a day to enable the hormones in his body to act as they should.

As a family, we were then given the horrific news that the tumour was malignant but a diagnosis could not be discovered. After 4.5 weeks in Bristol Children’s Hospital, Oliver was transferred to Noah’s Ark Children’s Hospital in Cardiff, where he received numerous doses of chemotherapy. Oliver had a course of 12 chemotherapy treatments over 8 weeks. He then had high dose chemotherapy followed by a stem cell transplant.

During this time, Oliver was extremly poorly and was experiencing many side affects from the treatments. Some of these included VOD (Veno Occlusive Disorder), an extremely high heart rate, mucusitis, paraflu, norovirus and other ailments. Oliver was on an extreme amount of medication to contol his pain. Oliver had platelet and blood transfusions every day for 1.5 weeks to aid his recovery.

We, his mum and dad spent 5 weeks in complete isolation, and with the restrictions of COVID 19, his brother, or the rest of the family wasn’t able to see him. It was very challenging for us, but we ploughed through for our boy. On May 6th, Oliver was well enough to go home. He was heavily reliant on an NG tube for food, and copious amounts of medication.

We were able to get back to ‘normal’ with Oliver recovering well and still managing to smile.

Monday July 6th, Oliver received his first MRI scan results since the resection, 3 courses of chemo and high dose chemotherapy followed by a stem cell transplant. Unfortunately, we were given the devastating news that Oliver’s tumour has returned, but was now in a different area. The tumour was now incurable. We were given two choices, 1) To give him oral chemotherapy and have time with him, no matter how long or short and 2) To have the tumour removed, providing the neurosurgeon agreed.

July 14th we met with Oliver’s oncologist, and a radiologist from Velindre. As expected, radiotherapy/proton beam therapy wouldn’t be considered for Oliver due to being so young. Oliver’s consultant then confirmed that Oliver was booked in for surgery in just a few short days on July 30th. After surgery, Oliver would have oral chemotherapy, in the hope that it would stall any new growth, or at least slow growth down. They believed that the tumour would grow back again but there was always a chance it wouldn’t. We needed to give him that chance.

Even though histology was inconclusive, the tumour was extremely high grade and very aggressive. On the 17th July, we, as a family went on a caravan holiday to Newquay West Wales to enjoy some  time before the craziness of surgery started again. Little did we know, this would be our last holiday as a family unit.

On the 21st July, Oliver began to deteriorate rapidly. It was confirmed by his consultant that Oliver had a bleed to his brain which had caused a stroke. Oliver had lost the use of the right side of his body. His specialist nurse advised us that Oliver was now going to be receiving palliative care and the time we had left with Oliver was unknown. At 2:30pm, Oliver fell into a coma.

Oliver’s 1st birthday was celebrated the day after on Wednesday 22/7/20 with the fear that he wouldn’t be here for his actual birthday on the 29th August. We had the most beautiful day, spent with family and close friends. Oliver spent the day in the arms of those that loved him.

The day came to and end, and when our loved ones started to leave, Oliver’s little body was rapidly failing. At 23:55pm, Oliver passed away peacefully.

Life will never be the same again for us as a family. We miss him so so much. We miss his beautiful little smile and his belly laugh.

Oliver’s strength, determination and zest for life has encouraged us to carry on his legacy and make a difference to others and put smiles on faces in memory of our beautiful little Oliver who continued to smile, even through his darkest days.

Thank you for taking the time to read.
Zara, Nathan and Harley

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php