The next day my body ached, I had cried so hard the night previous I actually felt like it was possible I had damaged some internal organs. On the plus side though I think that night had been the first step of me letting it out. Little did I know months later I would be sitting here letting loose on a keyboard while crying sobering tears in an aid to help me keep my mind at ease.
The next step was Nates biopsy and we had also learnt he would be getting a central line inserted at the same time.
A central what? Yes, that was exactly my thoughts and I pray that anyone who doesn’t know will never need to find out first hand
A central line is pretty daunting to be honest it is used to administer medication, in our case what we didn’t realise was this medication would be in the form of chemotherapy. During his biopsy they would surgically put into place a line running from his arm to his heart. It looked horrible and sounded a bit to permanent for my liking as well as being accompanied with risks such as infection. It still bares those risks to his health and we find ourselves increasingly protective over ‘Mr Wiggly’. What we didn’t realise back then was we would be depending on it EVERYDAY to help with Nathanael’s treatment.
We would soon find out though that as scary as we had thought the central line would be it was our saving grace. It would save my poor baby from the torture of anyone giving medication or looking blood from him, which due to those beautiful rolls and chubby hands made veins practically impossible to find.
Any mother who has to take their poor baby for their first injections will relate to the anxiety that is letting a complete stranger stab your child with a needle. We go along with it because it’s in their best interests but it’s always harrowing hearing their little cries. This had reached a new level for me, continually someone new was arriving baring needles, it felt like torture and although Nate would forget seconds after my anxiety was causing me to bare his pain for much longer. With every cry, I blamed myself for letting this happen to him.
Nathanael went early that morning for his biopsy it was a long procedure lasting 3 hours. Paul and I spent the time sitting at the front of the royal with two coffees from the little pod that sits in the main entrance. It’s the first time Paul let his guard slip, I’d been leaning on him so heavily I don’t think he even had time to process everything himself. Now are baby had been taking away from us it was really starting to hit home, his chin wobbled and his face told a story that hurts my heart even trying to recall. Nothing is more painful than watching your composed husband cry. Our coffee tasted like tar and there was a satisfying smell of stale smoke encroaching on our space which normally would have turned me, nothing we did was going to sweeten the sour taste that was our body resenting and rejecting every part of what was happening to our baby.
Time past slowly and when we were called to recovery our little warrior melted every worry we had again. He had no clue to the pain both Paul and I carried for him instead all he had where chubby fingers reaching out welcoming us to lift him, hold him, cuddle him and love him like we always did.
Those cuddles are so precious and so well needed after being away from us, the worst case scenarios take over and we know that there is a chance no matter how small it is that anything could happen to him while under the care of those surgeons. As a parent it is terrifying but to the staff of the hospital it’s their everyday job. One that they are very good at.
Back on the ward Nathanael again was making us feel ridiculous for worrying as he had returned to his ‘happy and healthy’ self. Shouting at passers by who didn’t speak to him and charming every nurse who would look his way.
Our ‘Visitor’ from the haematology ward arrived again to see us and this time it was to take us round to outpatients to see Nathanael’s previous scans. We were revelling in the success of the mornings procedures and I was happy to swing my happy boy onto my hip and make the walk round. By this stage, Paul and I had both excepted our fate it was looking highly likely that this biopsy was going to show what our worst fears had predicted so we were ready to deal with what had to be done.
We naively for the first time entered the haematology suite not understanding how much time we would actually be spending there. I don’t know where I thought he was taking us to but I wasn’t expecting what I saw. The outpatient ward was much bigger than I expected. It scared me how big it was, surely they didn’t need this many seats? Oh how wrong I could be. Scattered around the room where other children baring the visual effects of their journeys. Chemotherapy is so necessary to kill the cancer that invades our babies body but it also kills so much goodness with it. It’s impossible for us to mask the mark it leaves, the pale skin and the bald head we all just have to come to terms with.
I cried, this time I didn’t cry because of fear or anxiety. I was crying because I realised we weren’t the only ones. We were not the only parents who had felt this heart ache and who bared this pain. It was shared and we were not alone. I often wonder how many other parents have stood at those hospital doors like I had on that night. Everyone copes differently but the fear of cancer and the way it invades your family is similar in so many ways.
I wish we were alone on this journey I truly wish that if we had to be the ones who went through this journey with our brave baby that we wouldn’t have so many other companions. It’s not fair and my heart hurts knowing this pain is shared. We are not alone.