Two days ago marked one whole year since we first found out that Dylan was seriously ill.
It is the day that a line was drawn, a line that marks life before cancer & subsequently life with cancer. The infinitesimal details that mark before & after are now forever etched firmly in my mind with breathtaking clarity.
One year on & the disbelief is still raging, the shock is still punching me on a daily basis & my heart is still filled with a sadness I never knew existed. I now have one year’s experience of being the mother of a child with cancer & it is safe to say there are still no routines, each day is still unpredictable & it still feels that there is little point in making plans further than a day in advance. However, we are one year in & incredibly Dylan is still with us & he is still smiling.
This post is nothing more than a blow by blow account of one day in my normal life where I am suddenly catapulted somewhat stratospherically into an unimaginable existence of mind blowing distortion filled with fear, sadness & humility.
September 2016; following a wonderful summer Dylan starts year one, two months short of his sixth birthday. He absolutely loves his school & always trots in without so much as a goodbye. However, as the early days of term progress he occasionally complains of back ache, he is sick a couple of times & by the end of term he has had about ten days off. He has no temperature, he continues to eat & sleep well & is still bouncing around. We visit the doctor on & off & in the end I put it down to new term school germs. Everything carries on as normal.
Towards the end of October I notice Dylan’s left cheek is slightly swollen; he says it is not painful.
The locum doctor at my surgery says it is mumps & that we have to stay at home until someone from Public Health visits to take swabs. I know it is not mumps & that afternoon I take Dylan to the dentist. They poke & prod & scratch their heads. They think it might be an abscess. After a couple of days there is still no appearance from Public Health & I take Dylan back to the doctor. Our family GP is back, arranges a blood test & refers him to the dental hospital.
Towards the end of November we take him to A&E in the middle of the night as he has woken up crying & his lips are painful & swollen. They tell us that he has had an allergic reaction & prescribe antihistamines & a week long course of steroids. Immediately his swollen cheek goes down to the point that it looks completely normal but a week or so after the medication is finished his cheek starts to swell again. Again, his lips start to hurt & we get another course of steroids, again the swelling disappears & again it reappears within a week.
Friday 16.12.16; the last day of the Autumn term & Dylan has a 9.30 a.m. consultant’s appointment at the dental department of our local hospital.
My sister & niece have come to stay, I say we won’t be long, I will drop Dylan off at school after his appointment & then we will pop into town for a spot of toddler fuelled lunch.
Nick comes to the hospital with us & to this day I am eternally grateful that he does.
After an examination they X-ray Dylan’s head & then we sit in a room with a consultant whilst he looks at the results. I am oblivious.
He offers some gentle reassurance & said he needs to get his colleague.
A couple of hours have already passed. I call my sister to let her know it is taking a bit longer than expected but we won’t be too much longer. I am oblivious.
Another consultant arrives & again we all sit in a room looking at the X-ray. The two consultants leave the room together & then come back to say that they want to run a couple more tests. They take a sample of Dylan’s blood & then go on a hunt for the sonographer; it is just before Christmas…not quite a skeleton staff situation but not far off. We are sent to get some food in the hospital canteen over the road & told to come back in about an hour, by which point the sonographer has appeared. I am still oblivious.
Dylan has an ultrasound of his face. We sit in silence looking at whatever it is that is inside our boy’s head appear on a screen. I have no idea what we are looking at. The sonographer is silent.
By this point it is about 2 p.m. I call my sister again. I am still oblivious.
After the ultrasound both consultants say they want to talk to us & would it be ok if they get someone to sit with Dylan. I realise something is wrong but I have absolutely no idea as to what it can be. We do not feel comfortable leaving Dylan so we decide to take it in turns to sit with him whilst the other goes in for the chat. Nick goes first & I sit with Dylan in the now empty waiting room…it must be about 3 p.m.
Looking back, I do not know how Nick kept it together. I do not know how he managed to get up out of that room & walk back into the waiting room to sit with Dylan with such composure. He knew what I was about to hear & yet he graciously managed not to give it away. I do not know how he did that but I am so grateful.
My turn. It is all a bit weird. An intense undercurrent. Would I like some water? Can we get you a cup of tea? So I know something is wrong but the reality is that I am still completely oblivious.
The consultants are lovely. I can tell that they do not want to have this conversation with me. There is some discussion about the “mass” that they have discovered in Dylan’s head (I still think it is an abscess in his cheek or something along those lines). There is some discussion about the fact that they are not in a position to properly diagnose exactly what they think the mass is. There is some discussion about the fact that they will have to refer him to another consultant over in paediatrics. I must still have been looking oblivious, they must have been waiting for the penny to drop…but honestly I am still thinking abscess. Then, one of consultants asks me what is the worst scenario that I could imagine.
I am no longer oblivious.
I know immediately but I cannot say the word. I tell them I will not say the word, hoping against hope that it is not the word that needs to be said, hoping against hope that it is not the word that needs to be heard. In my head all I can think is that if I say that word & I am wrong they will think I am crazy. By this point I am wailing, I am shouting “no”. I break down. Heavy shock, heavy body shaking sobs. Just shock. The kind of “this is not happening shock”…but it is happening & I cannot take it in.
In truth, nobody actually says the word. There are enormous hints but of course at this stage no confirmation.
I remember Nick coming back into the room without Dylan. I do not remember much else. They just keep telling us that they are extremely worried & gravely concerned.
Even now as I am writing this I am shaking my head in utter disbelief.
Brave faces on we go back out to see Dylan, he has been keeping all of the dental staff & students entertained for pretty much most of the day. I look at him, my beautiful boy & I just cannot believe it.
A mist descends & a wall starts to rise. The whir of coping cogs begins to rumble & life slowly starts morphing into an existence between two worlds. This is when I start walking a tightrope.
It must be about 5 p.m. & I ring my sister. I do not remember what I said, I think I hinted at something but I was in denial; there were so many more tests to be done, in my mind I was doing a “wait & see”.
We meet a lovely paediatric consultant, such a gentle mild mannered man. He speaks about organising tests; a biopsy, a CT scan, an X-ray, an MRI scan & blood tests. There is a great deal of concern about the fact that it is nearly Christmas, nobody is around, they need to pull tests forward before staff go on leave, there is an incredible sense of urgency.
We go home; stunned but still not completely sure what we are stunned about. It must be about 6 p.m. My sister & brother-in-law are there when we get back. We talk them through the day & agree that we needed to wait & see. The tests will give us more answers.
We get the kids ready for bed & then the phone rings. The consultant asks that we take Dylan back into hospital that evening; he needs hydration. That is all we are told. It must be about 7.30 p.m.
We enter the ward & it slowly dawns on me that we are on a children’s oncology ward. Nobody has confirmed anything yet but he is admitted that night. I stay with Dylan in room nine.
Saturday the 17th of December 2016 the consultant tells us that Dylan has cancer. He just needs to confirm exactly what type it is.
In the six long days leading up to his exact diagnosis Dylan has X-rays, CT scans, an MRI scan & a lengthy general anaesthetic for a biopsy & a Hickman line insertion.
In the six long days waiting for his exact diagnosis we are careful not to “google” childhood cancer; we are already individually contemplating surgery, amputation, radiotherapy, chemotherapy, transplants, death; all before we have even opened our mouths.
So this peculiar world begins; we have to measure his fluid intake meticulously (it is insane), despite the fact that he is attached to a drip which is pushing copious amounts of fluid through his little body he still has to drink a lot of water to help flush out the toxic chemotherapy which starts in a few days.
It would take until 22.12.16 before they tell us that Dylan has b-cell lymphoblastic lymphoma. We would later discover that the last time they saw anyone with this type of cancer was seventeen years ago.
He has a tumour filling much of the left hand side of his head, it has not quite reached his optical nerve; a large tumour encasing his entire lower spine (despite the fact that they do not think it had quite infiltrated his central nervous system he is now being treated as if it had); he has tumours on his ribs; he has tumours on his shoulder blades. His body is basically riddled with tumours above & below his diaphragm. Lymphoblastic lymphoma is an extremely aggressive cancer as the two courses of steroids previously demonstrated. I often wonder whether those two courses actually saved his life by shrinking the tumours & thus prolonging his existence.
A couple more days without that referral & well…
Chemotherapy starts & his oxygen levels drop significantly. Suddenly his room seems filled with a lot of very experienced medical staff. I see Nick out of the corner of my eye & he is struggling. I feel like I need to catch up. I feel like I am missing something. They have called people in from every corner of the hospital. Dylan is grey & fighting against an oxygen mask. A paediatric cardiologist is called in from home. I do not have time to do anything other than act. I lie on the bed with Dylan, the portable X-ray machine is pulled in, the cardiologist arrives, I watch & hear his heart. My heart stops for what feels like an eternity.
Finally, we are told that his heart is ok. Basically chemotherapy started just in time. He sleeps with oxygen for a couple of nights. A physiotherapist is called to help him breathe.
The chemotherapy knocks him for six & he is awake to open presents on Christmas morning but refuses food & sleeps for most of the day.
He does not leave hospital until New Years Eve; a period of just over two weeks.
So much more happens within this time, none of it remotely pleasant.
Life has changed forever.