April 25th 2023

As I sit waiting for my 1 year old to have chemo I can't help thinking why him, why me, why our family.  

It was April 25th and one of the worst days of our lives.  My 6 month old was just not himself I had taken him to A and E twice and had been dismissed, they said he was allergic to milk or was teething. This I knew was wrong I had a feeling it was worse than that. His head had got bigger, he was as crying a lot and he just wasn't happy, I had googled change in head size (which I now know I should never do) and all these terrible things came up, one which was a brain tumour, I read into all these horrible things and moved on to the next. In my mind I thought no way could it be a tumour babies don't get tumours! I mentioned this next time I went to A and E and the first Dr I saw laughed at me and said "no babies don't get tumours", so I was very reassured. The third time I took him to A and E we went early in the morning, Zack was being sick and I just thought even more now something was wrong. My husband and I said bye to our 2 older kids and said we'd see them later at pick, little did I know this was the last time I would see them for almost a week. We got to A and E I explained to the most lovely dr all about Zack and his symptoms and she checked him over, all his observation were fine. About an hour or two later She decided it was a good idea to look into it a bit more and to a quick CT to rule out anything sinister or a brain tumour as after all my readings that's what was bothering me. 

Zack was really great and the CT was over in a minute and he came down happily. Sam and I were sitting quietly in a side room minding our own business when the Dr comes down, and says we are just going to move you into your own private room. It was at that point I knew something was wrong, my stomach churned, and my head was spinning, be brave I was saying in my head and don't cry. I am a crier, I am not ashamed to admit it. So on we went to this tiny room and she sits us down and in her Dr voice says 'so it's not good news, it's something we haven't seen before, your baby has a massive brain tumour on the right side of his head'. All I could hear in my head was the word tumour, tumour, brain, head, the room at this point was spinning and I could feel my heart starting to pound. Sam, was amazing he was so strong (one of us had to be) he was asking questions, none of them I actually remember the answers to. All I could think about was him dying, I asked her if he was going to die and she couldn't give me an answer, she said we will do our best to help him, at that point I couldn't take it any more and bolted for some fresh air. 

I sat outside the parking lot of Barnet hospital crying my eyes out, my baby my 6month old was going to die and I couldn't help him. I called my family and cried down the phone to them, I remember saying I can't do anything to help him I was totally helpless. A nurse came to check on me and gave me hug, she didn't know what to say to me but was very reassuring. I went back inside what seemed like 5 hours later but was only 15 minutes. My husband who was being so strong was sitting with my baby and hugging him and speaking to the dr. It was all a bit of a blur, lots of drs lots of nurses. They were saying they were going to blue light him to a hospital but wernt sure which one yet. Eventually they told us we were going to GOSH and that an ambulance would be picking us up and taking us there. Before this they had to monitor Zack and take some blood tests and do other tests to make sure he was okay to travel. I sat outside the room whilst they did the all the blood tests as he was screaming, I just couldn't handle it. Eventually the ambulance showed up but told us they only had one space in the ambulance. I sent Sam, he was stronger and was just better in this kind of situation. I walked and cried them both to the ambulance, gave Zack a kiss and told them I would see them at the hospital. 

My dad and his best friend met me at the hospital to take me home to pack, I had no idea for how long. I rushed home to pack, threw things in for all three of us and then raced to the hospital, I didn't want to leave him alone without me, he was going through awful things and I wasn't there to help him. I felt totally helpless. 

I arrived at the hospital, Zack was already in surgery by the time I got there. We waited for what seemed like forever but was only an hour or so. They told us they had drained all the water in his brain as the tumour had stopped it from getting round the brain and that they had inserted a reservoir in his head until they took it out. 

When we could see him again he was in the NICU. He had tubes everywhere and was wrapped in a blue blanket. The nurses in the NICU were the most incredible nurses I have ever met, so friendly, warm and kind. They just wanted to do the best for us all and kept offering me a drink or a biscuit to make sure I was okay. By now it was late, I had no idea of the time or what day of the week it was and it was only day 1! We stayed with Zack for a a few hours but he was really sleepy from the anesthetic. The nurses kept telling us to go to bed and get some rest but I couldn't leave Zack behind. The hospital give a room to both parents when you have a child in the PICU, as we were late and nothing was open they had to give us an emergency room in the nurses quarters so we could be round the corner. Eventually we decided to leave Zack and go to bed, I couldn't sleep, kept tossing and turning, I turned to my phone and looked at all the messages I had from my amazing family and friends, news travelled really fast. 

The older two were staying with my parents who they just adore, so I knew they were in safe hands but I  hadn't spoken to them and I missed them, I wanted to be there for them but I needed to be with Zack, I was totally torn.