Paul and I were ready to take on whatever we had to. We knew that this diagnosis meant we would be starting chemotherapy and it was important there was no delay on treatment. Our baby needed urgent care and after officially confirming from two separate pathologists that it was definitely Wilms, our consultant was able to provide us with a treatment plan.
We had a goal set and we needed to start to take baby steps towards it. A total of 4 weeks of chemotherapy was planned, surgery to remove the tumour and then 4 to 26 weeks of further chemotherapy, and if we were really unlucky radiotherapy.
My small not even one year old baby was set to start chemotherapy. It was heart breaking as a mother for me to know that such a terrible mix of chemicals was going to be entered into his body. But we had no choice. I had barely given him Calpol before yet here we were setting about starting treatment so strong I could barely comprehend. Ignorance is bliss in this case and I tried hard to not google what the effects were going to be. I think the first that comes to mind is always the loss of hair. If only that was the worse.
The two drugs he was to be given where Dactinomycin and Vincristine for 4weeks before surgery would be planned. There medical names meant nothing to us but yet everything as the better they worked on killing his tumour the less treatment we would need on the other side of surgery.
We arrived back the next day not knowing what to expect, the reality of it was that those lethal doses of toxic liquid were administered over a space of about 3minutes. 3 minutes and they had pushed them through his line in a syringe. It hurt so bad, I was shocked I had anticipated a more agonising procedure. So quickly our hearts felt pain, this wasn’t fair and wasn’t how it was meant to be.
The nurses and staff in the outpatient ward I should add are angels with invisible halos, they greet you with a smile and take time for every child not forgetting about the parents. It means so much and we never knew how much we would appreciate their welcome, nothing is ever too much to ask and they really care for each as an individual. I cried after Nate got his first chemotherapy and the ward sister gave me a knowing hug and said ‘It’s not fair but I promise we are doing this to make him better, we want to see him as a big boy of 18 bounding in here.’ I always remember that on the tough days, as hard as it is to watch him get chemo it’s all to make him better. Survival is our new goal.
We waited, and watched Nate taking in his every move. I don’t know what we expected I nearly thought that instantly he would be different but he wasn’t. He cooed his baby babble and played with his toys like he always had. That week was probably the ‘easiest’, we still had hair and we visually seen very little effect to his wellbeing.
Second week I felt tricked we’d had it so good the first week, they had lulled us into a false sense of security. IT WAS HELL but yet I knew we weren’t the worst off. My poor baby was coping so well but I could see the effects of it so clearly. He hated to be touched as his joints ached, I regularly pondered over whether I was helping or hindering him when I lifted him from his cries. His appetite was minimal, anything he did eat turned to vomit and playtime had turned into a spectating sport. Lifeless and pale was our new normal.
It was the third week and as predicted by our consultant Nathanael started to lose his hair. My tears had dried up for a few weeks but I definitely found this emotionally straining. I knew it was coming but I just longed for him to not have that ‘I’ve got Cancer look’, it was inevitable and although everyone reminds me on a regular basis “Not all babies have hair” MY baby did. He had beautiful hair it was fluffy and fell beautifully over his forehead. He had hair and I adored it, I used to stroke it so lovingly while I fed him and Paul and I often talked excitedly about first haircuts. He also had long eyelashes that fluttered and would have made lots of girls jealous but chemotherapy stole those too. It really is a visual reminder to us every day, as if we need one. We do try to focus on the fact that Nathanael doesn’t care though. If he’s happy without it so should we, but it’s hard.
On that same week we received a date for surgery, it was welcomed with a hatred. I’ve never been through anything like this myself so how was it fair to put my baby boy through something so terrifying. The anxiety of it all was giving me nightmares and to top it off Paul started to get horrific migraines. I wasn’t sure how to help him but Nathanael and Alfie kept both of us going. Every day we lived the unknown in fear of a temperature or sickness. We had become isolated, it was critical that we kept Nathanael safe before surgery with the chemotherapy suppressing his immune system and our surgery date looming we couldn’t take anything else on.
In hibernation, or possibly another stage of denial, we happily shut our doors to the constant questions on how he was and foremost any face to face confrontation. That way we learnt how to just deal mentally. No visitors and I practically stopped replying to most texts, I suppose I could say I didn’t mean to shut off to the world but realistically looking back it was hard for us. Our world stopped in December but everyone else was living in a new year with happy new aspirations. I still find it hard when people ask questions face to face to emotionally hold it together, our journey is still ongoing and things are so raw. Paul particularly in man style has a rule that no one asks him so he can get on with it and we can settle ourselves into whatever normal is for us. You’ll find anyway if you do ask we pretend things are “okay” even when they aren’t, who seriously wants to see either of us having a breakdown in the middle of the street?
I would definitely say back then I wasn’t emotionally stable, I coped really well with what I was given and I am beyond lucky to have the friends and family that we do supporting us, but I definitely was just about holding it together. The one thing that kept us all going though was Nathanael, his strength and bravery is ten times that of a grown man and his resilience is something I will admire forever. He makes us so proud every day. Who else would vomit violently into my opened hands then smile and screech dada, like nothing had happened?