DIAGNOSIS AND TREATMENT
Please note that this has not been written by medical experts and therefore based on a lay person's interpretation of conversations and research.
SYMPTOMS
Eye Pain and Squint
Started off as intermittent eye pain. After a week, this developed in a squint and got progressively worse each day. A CT scan initially showed a mass behind the eye - later confirmed as an apricot sized lump behind the top of the nose, placing pressure on the optic nerve.
DIAGNOSIS
Non-Hodgkin Lymphoma (NHL) Cancer
Initial suspicion was nasophlarinx cancer, which typically impacts 50-year old men with 40-70% survival.
Now confirmed as non-Hodgkin lymphoma (NHL) - a cancer of the lymphathic system. It is treatable and it can be cured - but it's not a certainty. There are 60 variants of NHL. It is in close proximity to the brain and placing pressure on the optical nerve. This type of cancer prevents white blood cells from working properly and reduces the body's ability to fight infection.
STAGE AND TYPE
Burkitt’s Lymphoma - Potentially Stage 4
There are sub-types of this cancer and this believed to be a high grade (fast-growing) B-cell type called Burkitt’s Lymphoma. The tumour has penetrated the meninges (a membrane protecting the brain and spine), which means it may have spread through the spinal fluid (although there is currently no evidence of this). It may also have entered the optical nerve, which provides a route for the cancer to spread to the central nervous system and brain. Combined with the fact that we have one shot to treat the tumour, this is being treated as stage 4.
TREATMENT
7 Cycles of Chemo (~5-6 Months - Target End Date of Mid January 2021)
Given the speed of the growth, proximity to brain and impact to the eyes, chemo was started whilst waiting for the biopsy to confirm the type of cancer. Louis has now been put on an intense course of chemo and steroids. It includes a range of chemicals and administered in various ways - including intrathecal, which is similar to lumbar puncture, providing chemo into the fluid that surrounds the brain and spinal cord.
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There will be 7 cycles, which will initially be 2 weeks apart, moving to 3 and then 4 weeks. This means treatment will not be completed until at least mid-January - and it will stretch out further if Louis becomes ill or takes longer to recover between cycles.
SIDE EFFECTS AND OUTCOME
We have effectively got one shot to cure this. It will be a rough journey
A number of side effects are likely and already displayed. Includes sickness, low white blood cell count, infection, fever, mucusitus (sores in places such as the mouth, throat and stomach), hair loss, constipation and stomach pains. There are a number of other side effects but these are more rare and along with the common side effects are countered through treatments such as antibiotics, intravenous drips, blood transfusions, painkillers (inc. morphine), etc.
After 4 cycles, the tumour should have disappeared - this is the first big milestone.
The first 2 years run the highest risk of relapse - the odds get better thereafter. Louis will have check-ups every 3-6 months for the first few years.
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There is a risk of secondary cancers due to the treatment, which could occur in a few years - so we will be looking out for this when he is 5-6 years old.
LINKS
Get Involved
If you want to know more, you can read all about this type of cancer and many others on the Cancer Research UK website.
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Abby's Heroes is a charity that supports children and their families on the Piam Brown and Teenager / Young Adult wards at Southampton General Hospital. Since being here, it has become apparent that journeys can extend to many more months and years and parents can find themselves in real difficulty. On joining the ward, we were immediately offered food and drink vouchers. Care packages are delivered twice a week in the form of a free M&S snack/lunch drop and a Dominoes pizza on a Saturday, which help to perk you up a bit.
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CLIC Sargent is a cancer support organisation that help provide emotional and financial support to families impacted by childhood cancer. They also help children and young people remain in education and provide free places for families to stay together during treatment near to specialist hospitals. As well as being given loads of leaflets, CLIC Sargent have provided us with access to a social worker who pops in for a chat once a week.
The Children's Cancer and Leukaemia Group (CCLG) is a specialist charity that act as a specialist hub for childhood cancers.
