“You can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass.” – Timber Hawkeye
The biggest frustration for me at the moment is that I have very limited control over the situation that we are in. I cannot control how my baby will react to the chemo, I cant control how he will react to the steroids, I can’t control the disease and whether the drugs being administered are effective in eradicating it. I can’t control the actions and words of other people. I cant always control my own instinctive responses to the situations.
For someone who’s such a control freak even thinking about stuff that is out of my control makes my top lip get all damp and sweaty. Unfortunately for me though, being an oncology parent means there are a things that I simply cant & wont be able to control, it’s my duty to learn to manage my response and to ensure they have minimal impact on my son.
The thing with many childhood cancers is you cant SEE it. In fact I am sat on the oncology ward as I write this surrounded by children who don’t look any different to any other ‘normal’ kids. Except, they are. They all have different types of disease, they are all at different stages of their treatment plans. They are all different ages, heights, weights and have different ethnic origins. Cancer makes them the same. The disease Jack has is widely debated (as I have mentioned in my blog ‘The Disease’) in the clinical world as to whether it is a cancer or not, it’s often described as ‘cancer-like’ what does that even mean? Histio patients are always under oncology and in many cases require chemotherapy. Our kitchen looks like a chemistry lab….we have a big yellow bag with ‘CHEMOTHERAPY MATERIALS’ emblazoned on it, we have morphine, lactulose, Nozinan, piriton, ondansetron, proplanonol, prednisolone to administer daily. Let’s not split hairs.
When we had our ‘booking in’ meeting with one of the ANPs at Alder Hey we were introduced to the importance of control for children with cancer. Like anyone who’s given a cancer diagnosis they find themselves forced in to a world of appointments, tests, pokes, prods, dressings, drugs etc etc. They are given a treatment plan which reads like a school timetable. You have to have this drug at this time, this test on this date, you cannot eat/drink this, you mustn’t take part in that sport and so on. It’s essential therefore to allow choices to be made by the child/patient to give them some of that independence back, some of that control.
Obviously as parents we take on the responsibility for the ‘big’ decisions related to our child’s care. We use our intuition, guidance from the professionals and if you’re an internet fanatic like me, you will read every bit of research and compare notes with other families who have been in your shoes.
When Jack was first diagnosed in 2014 he was too young to understand what was happening. We chose not to use the word ‘cancer’ we chose to call the chemo ‘rocket fuel’ and we chose to deal with the colossal change to ‘our normal’ by making it a bit of a game. This time though he’s not a toddler. He’s intelligent, inquisitive and has an opinion!! It’s an awful lot harder this time, I have to confess.
So far, the choices we can let him make are pretty basic but include; what dressing he has on his gripper needle, whether he takes liquid or tablets for certain medications, if he does/doesn’t feel up to going to school, if he does/doesn’t feel like socialising, if he does/doesn’t want to have a bath, what he does/doesn’t want to eat. Now is not the time for battling over lack of vegetables in his diet for example, although we are making some progress with juicing which is a sneaky way to get the 5 a day in and keep at least SOME of the maternal guilt at bay.
When a child feels that they have lost control they can be very expressive in the way they communicate it. There may be tears, bad behaviour or becoming a bit withdrawn. Jack copes by getting upset and then (on his terms) we can reason with him and explain to him why a particular decision has been made. Once he understands he can accept and in some way take a bit of that control back. For us though having to explain, discuss and reason with him adds a totally different dynamic to this situation. It forces you to constantly question your own decision making. Was it the right thing to do to let him go to school? Should we be stricter with his diet? Does he REALLY need to understand the ins and outs of his diagnosis? Should we be listening to the ‘alternative therapy’ camp more closely. Is it worth all this discomfort and upset without knowing if we are doing the right thing long term and knowing if it will come back again regardless.
In recent weeks my head has really been chocker block. There are so many questions, lists of stuff I need to do, messages I need to reply to, catch ups I need to agree to in order to keep a bit of ‘normality’ in my life. For making me feel like it’s all ok when jack is having a good week. I have succumb to the immense feeling of overwhelm more than once in the last few weeks and honestly, I have felt like screaming. Screaming and then running away.
We are in the fortunate position to have a very close knit family on both sides. Our immediate families and wider network of cousins, aunts, uncles & grandma’s surround us with so much love and support. The issue I have found is that I feel a responsibility to keep everyone updated, informed and educated. My fear is that by doing this I am offloading thoughts and feelings to them that they then have to carry and then in turn I spend time worrying about what they have going on in their own minds. Part of the reason I started writing the blog was so I didn’t have to repeat myself so often & so I didn’t have to face the looks on peoples faces when they hear what has been happening too the little lad they all love so much.
The fact is, our families are living it too, they are feeling it, they are concerned about the situation and they don’t know or understand half of the detail Lee & I do. It’s exhausting processing things in your own head but having to talk about it constantly means there is literally no escape. There’s no break. It’s a constant reminder that we are living a reality in which we have NO CONTROL, its like the disease has not just set up camp in our boys body but in every other aspect of our lives too.
I started by saying I am a control freak, Lee is too. We work extremely well together as a couple and have had great results in our personal & private lives as a result of the team we have become over the last 16 years (you’d get less for murder, as he would say). We question absolutely anything & everything the docs say with respect to Jack. We know only too well the importance of speed and accuracy when a child is diagnosed with a ‘rare’ cancer. We were faced with a situation a couple of weeks ago that was completely out of our control and one which honestly almost tipped me over the edge. I am told frequently that I’m strong and that I’m doing a great job but the story of a little boy called Alfie Evans knocked the stuffing right out of me.
Jack is under Alder Hey Childrens Hospital, the hospital had become the centre of a huge legal battle between the parents of Alfie and the trust. I don’t wish to discuss the ins and outs of the case as I don’t feel in a position to do so but I would like to share how the media and social media coverage of the story resulted in my seriously questioning my ability to cope with our own battle.
On Tuesday 10th April Jack was admitted to Alder Hey with a really bad reaction to the drug cytarabine. His face and eyes were swollen, his temp had sky-rocketed and he was being pretty violently sick. After being assessed on the day case unit we were admitted to the hospital. We were there for the next couple of days. Being an inpatient in hospital is long and boring. I found myself scrolling through Facebook and enthralled in a series of posts about little Alfie. It became apparent that there was going to be a protest by some of the little boys’ supporters outside Alder Hey. On the Thursday morning we were seen by the junior doctor and advised we would be staying again until Friday. Half and hour or so later I heard a conversation between the ward manager and another smartly dressed lady. They were discussing how many beds were available and who was being discharged. Shortly afterwards we were told we were being discharged.
That evening protestors gathered. I was so glad we had gone home. Over the next few days the protests become more lively. A bouncy castle was erected outside the hospital and there were reports of people boozing and generally causing a bit of a nuisance. Whilst this was happening the media and social media’s went bonkers. It seemed everyone had an opinion on the case. People had become overnight paediatricians, legal experts and children’s rights activists. I was confronted with stories of alleged ‘vaccine injury’ ….could this be why Jack has relapsed?!, ‘euthanasia’….are the doctors really going to kill this little boy?! the doctors and nurses in the hospital where our son is being treated were being called murderers….how can they say that, these people have not joined the profession for the money or fame but for the desire to care and make kids better; they were being accused of having blood on their hands and lacking compassion and empathy……. My head swam.
People who I know personally were sharing things that I didn’t want to see but I couldn’t help myself reading. I was sucked in to a really dark vortex. It was the first thing I looked at before bed and when I woke in the night. I was panicking every time I thought about going to Alder Hey. I was terrified that Jack would somehow hear and see what was going on and want to know more. I couldn’t make it stop, I couldn’t switch off and I couldn’t stop thinking about it. It was the noise from this little boys story that made me realise I had reached my edge.
My heart is pounding writing about it. There was something about hearing the words of a helpless parent fighting for their child in the hospital were my own child is fighting that completely rocked my core. It made me face unthinkable thoughts, it made me question my own parenting decisions, my friendships, some of my family members and it honestly upset me more than I would have ever believed possible.
I was so sad to hear that Alfie had lost his battle this past weekend. His battle will forever be etched in my heart. The little boy who I’d never met but who’s story woke me up more than anything has ever done before.
The best thing about reaching the edge is that you have to stop for a second….and catch your breath before making a decision. In my case I realised I had two choices. 1. To continue through the vortex and allow the noise of a situation I had not control over to rob me of my time, and emotional energy or 2. To step back, to stop and to be grateful for the energy I have to focus on the things I can control.
I took a deep breath. I reconnected with my purpose and I decided to run. Obviously I didn’t run away, I decided to just go for a run. I bought new trainers and I ran, in the pissing down rain that Sunday afternoon. It was the first one I had been on in 18months and that half an hour in the pissing rain and fresh sea air lifted this fog that I had allowed to gather around me.
I was back from the edge and back feeling grateful for the fact we have got the opportunity to get Jack better. We have got a diagnosis and well researched treatment plan and we can and will win this battle together.
I know what to do now.