Fact: I do not need reminding of how far Dylan has come, I see it for myself everyday; but to have written certain details here serves as a stark reminder that everyday since his diagnosis has been nothing short of a miracle.
Sometimes when I sit down to write these blog posts I struggle to find the right words to convey the reality of this heinous situation. I know that writing can convey both hard truths & subtleties but I often feel that no matter in which order I put these words I will never be able to truly do justice to the all encompassing harm that childhood cancer brings.
Everyone gets ill on occasion but some illnesses go so far beyond the realm of normal human experience that trying to describe them seems virtually impossible; the need for such language is so uncommon.
With facts & statistics you would be forgiven for thinking that I do not need to find the words as they are already there in black & white; but it is the acceptance & consequently the mental digestion of the facts & the stats (or lack thereof) that is difficult to portray in words.
I am no statistician & neither have I felt the need to make many assumptions based on statistics, however in certain situations some stats are hard to ignore. In life generally a commonality of averages is often considered a good indicator to predict certain outcomes, as an oncology parent I have had to educate myself in so many ways that I think that being unaware of statistics is almost unavoidable. Facts & stats alongside the multitude of concerns I have already described in previous posts just sit quietly in the back of my now completely bewildered mind.
Here are just a few black & white stats from the UK based charity Children with Cancer:
“Childhood cancer is rare – around 1,600 new cases are diagnosed every year in the UK (in children aged 0 to 14 years). This means that around one child in 500 will develop some form of cancer by the age of 14 years. Childhood cancers account for 0.5% of all cancers in the UK. In Britain, childhood cancer incidence rates increased by 38% between 1966 and 2000. Some of this increase is thought to be due to improvements in diagnosis and registration. In the UK, cancer is the most common cause of death in children aged 1 to 14 years, accounting for around one-fifth of deaths in this age group”.
Once you are in this world the analyses are frightening.
On day one I was thrown a black & white fact: Dylan has cancer. He has a strain of non Hodgkin’s lymphoma (NHL) called B-cell lymphoblastic lymphoma (B-LBL) & as I mentioned in my post “The Diagnosis” the consultants had not seen another person with this type of cancer in seventeen years. That fact alone is frightening. I have since learnt that in the UK, NHL comprises approximately 11% of all childhood cancers; lymphoblastic lymphoma makes up 2% of NHL diagnoses & B-cell lymphoblastic lymphoma makes up approximately 15% of all lymphoblastic lymphomas. So statistically Dylan’s cancer makes up 0.033% of UK childhood cancer diagnoses & as such there are very few stats.
Finding any perspective within the world of cancer is hard. There are so many different types of cancer, some easier to treat than others, some with short treatment plans, some with really long ones, some cancers can be managed with drugs for years & some are sadly just untreatable. Once you enter this world you learn fast that some cancers are deemed “better” than others; it is brutal. This initial knowledge leads to a peculiarly perverse hope; you realise that a cancer diagnosis is on the cards & you are helpless to prevent it so of course you immediately hope that you are fortunate enough that the diagnosis is one that can be treated. We spent five days waiting for a definitive diagnosis, waiting to see if Dylan’s cancer could be treated & within that timeframe I had imagined every single possible outcome.
The treatments all differ too; surgery, radiotherapy, chemotherapy, stem cell transplants, proton beam therapy, immunotherapy, precision medicine, hormone therapy…the list is long & not one of them comes with a single guarantee. I remember medical friends expressing relief that Dylan’s cancer was lymphoma & the consultant telling us that the vast amount of tumours that he had should “hopefully just melt away” with the chemotherapy drugs he was to be given. When he was diagnosed they told us that they were “cautiously optimistic”.
Oncologists prefer not to use the word “cure” when discussing cancer treatment and prognosis as it is so hard to know for sure that all of the cancer is gone after treatment.
At Dylan’s second MRI scan the consultants told us that they were hoping for a 35% reduction in his tumours; as it turned out from the results, he actually had a 90% reduction. Totally against the predicted odds this was incredible news & I would love to be able to run with that fact but as I mentioned in my post “A Dark Day”, Dylan’s grandmother struggled with continued relapse with both non Hodgkin’s & Hodgkin’s lymphoma for over twenty years and although Dylan is a child (apparently children respond better to certain treatments than adults), this is another frightening fact that sits in my mind. There are just no assurances.
In actual fact there is very little in terms of statistics for B-LBL because it is so rare. To a degree it is treated similarly to acute lymphoblastic leukaemia but Dylan’s treatment plan was altered to include extra protocols & also because of the stage his cancer was diagnosed; as the consultants could not be completely sure whether his cerebrospinal fluid & consequently his central nervous system had been infiltrated he is being treated for a stage four diagnosis & this is why (despite having the high dose methotrexate protocol) he will continue to have lumbar punctures with intrathecal methotrexate for the duration of his treatment.
The results of Dylan’s first MRI scan read like a horror story: he had tumours that surrounded the lower half of his spine & the left hand side of the tube that surrounds his spinal cord, that tumour penetrated his spinal canal & his vertebrae at several points on both the left & the right; he had a tumour that surrounded his aorta, a tumour at the back of his diaphragm, tumours around ribs on both sides of his body, he had a large tumour in the left hand side of his head which surrounded his jaw & had started to destroy the bone, it filled the left hand side of his head from his neck, filled the middle part of his nasal passage & sinuses, it completely filled the floor of his eye socket & touched the muscles that control his eye movements compressing his optic nerve, it extended up to the base of his skull & had started to push his eye outwards, it extended into his cheek muscle & effused into the cavity of his left ear, he had considerable thickening of the layers around the left hand side of his brain & also had water on his left lung.
The consultants told us that they were utterly amazed that he had “carried on for so long”. When I say that Dylan’s chemotherapy started just in the nick of time I am not exaggerating…the tumours were so close to stopping him breathe (which we saw for ourselves) & almost in his brain & other vital organs.
Statistical survival rates are often based on previous outcomes of large numbers of children who had the disease, but they cannot predict for sure what will happen in any particular child’s case.
The outlook for children with NHL varies by the type and extent of the lymphoma, other factors can also affect a child’s outlook, such as the location and size of the tumour(s) & how well the lymphoma responds to treatment. Of course the outlook for each child is specific to their circumstances. With NHL it would seem that being an early responder (reacting positively & quickly to treatment) is a huge benefit whilst at the same time the more advanced the disease the greater the chance of relapse. Dylan responded early whilst carrying a very advanced cancer; one step forward one step back. As a matter of fact in order to accumulate survival rate data, doctors need to look at children who were treated several years ago; with so few B-LBL diagnoses there are not sufficient stats to make any established assumptions. There are just hardly any children diagnosed with B-LBL, for example the population of Australia is approximately 24 million; there is one little boy in the whole of Australia who was diagnosed with B-LBL in August 2017. This Australian oncology team has described it as “a type of cancer that a recent global study of approximately 10,000 children with childhood blood cancer only 2 were similar to this type” & “a type of cancer with an unknown prognosis”.
This does not make me think the worst or the best, it just leaves my mind in a fuzzy limbo which is where I truly believe it would be with or without statistics.
Like I said earlier, I am no statistician & neither have I felt the need to make many assumptions based on statistics. However, without them I feel like we are winging it.
Cancer is so unpredictable & unfair & from day one of a cancer diagnosis you are forced to step into a complete unknown every single day.
Stats & facts do not always add up; the best prognosis can go the wrong way & the worst can make you marvel. It is a painful & continual guessing game & the only way forward is one tiny step at a time.