When Darkness Begins to Prevail

Hello everyone.

It’s been a while since I last posted simply because a lot has happened.

I’m happy to say that we had a full and uneventful Christmas at home. Evelyn thoroughly enjoyed the time we had and loved all of her presents. As dad, I loved spending time with my two favourite people. I even got a little present from Evelyn that has taken the form of hair growing on her head. It made me so happy to know that the effects of the chemo were finally wearing off.

New year was quiet, we were all fast asleep long before the clock hit midnight and took solace in knowing that some of the hardest things we’d ever done were behind us.

On the second of January, Evelyn spiked a temperature in the morning. No biggie, we followed procedure and headed to hospital where she was admitted pending blood test results. The blood results usually take two days so we settled in for a short break away from home.

By the 40th hour, Evelyn’s breathing was increasing in speed. Upon examination, the doctors began to suspect a chest infection so prescribed some more antibiotics to try and alleviate the symptoms. Things quickly spiralled out of control and by the 50th hour, we were moved to critical care.

A machine called an airvo was brought in. This machine delivers humidified oxygen at a higher rate in order to avoid damaging the respiratory system with high flow dry air. This machine did little to make things easier for our little princess but she was at least settled. At its peak, she was breathing 120 times per minute. As you can imagine, this is incredibly tiring but she still managed to keep it up for a further 48 hours.

It was in the early hours on a Saturday morning that the critical care team made the decision to move us into intensive care so that Evelyn could be intubated and hooked up to a life support machine. Of course this flooded is with panic and negative emotion. Fear took over and I put my guard up. For a few minutes, all reason left me to be replaced with a fight response. Despite my brain screaming to let these guys do what they think was best, I was prepared to fight to the death to keep anyone from doing anything to her. Sheer exhaustion had poisoned me. It didn’t take long for sense to return and we moved onto the ICU knowing that it was our only hope.

The team on ICU were outstanding. Our nurse (I’ll call her nurse E) was one of the kindest and most compassionate young women I’ve ever had the pleasure to meet. Despite myself and my wife being incomprehensible emotional wrecks, she calmed us and explained everything that would happen. Soon after our arrival we were asked to leave whilst they attached a ventilator and sedated our pride and joy. Numbness kicked in. I took myself outside to call my sister and lost it. Tears flowed freely, screams and expletives followed. My sister is the only close relative I have left and as she was the one that raised me, she usually bears the brunt of any breakdown. I cried down the phone to her for around 20 minutes and by the time I’d hung up she’s already began the 60 mile journey to be with us. I’d cried so hard that I almost choked and wound up vomiting into a bush.

Before long, my sister arrived. Clearly she’s been crying but had made an effort to hide it from me. We went to the hospital cafe and she force fed both myself and my wife, watching us choke down each mouthful with concern in her eyes. We finished our food and made our way back to the unit.

Time moves slowly when you’re waiting for something, the hour they asked us to give them soon turned into two and we wondered what had gone wrong. We had been allowed to sit in a family room outside the ICU. I called it the “waiting room”; that’s how it felt, a room where you wait for bad news. Two large leather sofas covered two walls in this 13×8 cell. On the walls hung pictures of bright horizons over grassy fields, clearly somebody’s idea of a calming landscape promising a bright future. It’s hard to see a positive when your daughter is so close to losing the fight. For a brief time I lost hope. I thought that at any minute there would be a doctor at the door telling us to say goodbye.

Just after the two hour mark, two knocks at the door drew our tear washed eyes up at the large block of mahogany veneered plywood separating us from the world. Nurse E gently poked her head around the door and slid through the gap. She sat next to us and explained that the standard ventilator they would normally use would have simply been too powerful to help and would’ve caused further damage. She explained that the procedure had taken so long because they were setting up a machine called an oscillator instead. The oscillator is a much gentler machine that would allow air into Evelyn’s lungs and minimised the risk of complications. She talked us through the drugs that Evelyn was on and did her best to prepare us for reentering the ICU.

The double doors opened and I hung the sharp left to get back to my girl as quickly as possible. Nothing of what I saw looked natural. Evelyn lay with her chest not moving and a thick tube emerging from her right nostril. The thing that frightened me the most was the noise. The oscillator is not a quiet machine. It produces a sound akin to a train chugging along a track. Loud, rhythmic and frightening, I already hated this faceless piece of equipment.

Nurse E talked us through the vast selection of drugs that silently pumped into our baby. There was painkillers, sedatives, drugs to paralyse the body and the one that really stuck out to me, Fentanyl. This is a drug that is stronger and deadlier than Heroin and here I am watching as it floods my daughters veins. “If it helps, it’s ok” was my mantra from that point.

At around 2000 that night we were asked to do something alien to us. The nurses asked us to leave the ICU to rest. We’ve never been away from our little girl overnight. There’s always at least one parent by her side at all times but sadly for us, things work differently on an ICU. They provided us with a key for a room on the floor above and promised to call if they needed us. We kissed Evelyn goodnight, said goodbye to our families as they headed home and retired to our room.

We swung the beech fire door open to see what our dwelling for the night looked like. A single bed filled one wall with some drawers and a sink on another. A tv hung from the top corner of the third wall in a position which made it impossible to see. We were both exhausted and hungry so we ate, chatted and turned in for the night. Initially we tried to sleep next to each other but two bodies on a single mattress in a room without ventilation quickly proved unsuitable. I curled up on the floor next to my lovely wife and closed my eyes.

The phone didn’t ring.

Our second day by the bedside was uneventful. It was a relatively pleasant atmosphere on the unit despite the negative aspects. We were allowed to sit by the bedside where we chatted, read to Evelyn and generally tried to maintain normality. All day, different drugs and antibiotics flowed through tubes and made their way into Evelyn’s bloodstream. I hoped that the right drug was being used as we still didn’t know the cause of this infection. By early evening we were surprised to hear the doctor say that Evelyn was ready to be moved onto the normal ventilator. This felt like such a huge step and we stood with bated breath as they made the switch.

The new machine was silent. It made things a little easier to bear not having the continuous thunk of the oscillator in the background. We continued our chats and eventually the time came that we were asked to leave again. This time, we were given a different key which opened another door to a similar room with one difference….two single beds.

I walked to a local dominos and returned with arms filled with pizza. We sat on the beds and slowly chewed and swallowed the food. I’d cried so much that I could barely taste anything. Each mouthful made me feel sick but it was the only food I’d eaten in 24 hours so forced myself to continue tearing chunks of garlic bread and pizza off and struggling to swallow. We chatted a little more and turned off the lights to try and coerce sleep to take us both.

Again, the phone didn’t ring.

The next morning we made the now familiar trip back to the unit. Evelyn was doing incredibly well and her oxygen requirement had drastically reduced. I finally began to relax, we were going to get out of here eventually. We spent another day by the bed with books, magazines and conversation. Another doctor reviewed Evelyn later that day and to our surprise, said that he wanted the machine removing completely the next day. We felt so happy to know that the end was in sight. Our demeanour had changed completely in such a short space of time. We had our hope returned to us. The whole day was uneventful and again, the clock told us that it was time to leave. We kissed Evelyn goodnight for what we hoped would be the last time on an ICU. Tomorrow we would be able to stay with her again if all went to plan.

We headed back upstairs, showered and tried to relax. I took a short drive to a local Burger King and returned to the room with hands full of brown paper bags. Again, we’d barely eaten and the greasy food really hit the spot. We both closed our eyes again and hoped the phone wouldn’t ring. Again, it stayed silent.

The next day, Evelyn was roused and taken off the life support machine. Her breathing rate was back to normal and she only needed a little amount of oxygen support. We spent the day much as we had the previous two, sitting around and talking. Evelyn didn’t engage with us much, the drugs were still prominent in her system and kept her sleeping. We eventually moved onto the high dependency unit so that Evelyn could be closely mo ignored overnight. To our surprise, the team again asked if we’d disappear for the night. Given that Evelyn was still very much doped up, we left and headed up to our room for what we hoped would be the last time. That night it was Chinese food. I’ve certainly found that the food you eat can drastically affect how you feel in these high stress situations. The term “comfort food” has never resonated as much with me as it has whilst we’ve been regular hospital attendees. Many times I’ve looked at a healthy option only to think “bollocks to it” and eat whatever the hell we wanted. We finished our meal, showered and closed our eyes. Thankfully, again the phone stayed quiet.

We woke like kids at Christmas. We washed and dressed as quickly as we could in order to get downstairs to our girl. When we arrived, she was still asleep. We didn’t expect any liveliness from her after the ordeal so instead got comfy and waited for her to open her eyes.

Those big blue eyes shined brighter than I’d ever seen them. Although she still had plenty of drugs in her system, she engaged with us and sat happily watching cartoons with us taking turns to sit on the bed cuddling. I was so pleased to have my girl awake with me again. The day passed slowly and by the time the doctor visited us, he said that he was happy for us to be moved back to the oncology ward. We were elated. If we’re going back, it’s because things are ok. We packed and waited for the porter.

We re-entered our ward feeling like we’d returned from combat. Weary and worn we were directed into a single cubicle and quite honestly, couldn’t have been happier. Evelyn had faced the end and turned her back on it. She had fought long and hard with only success waiting for her. Pride filled my heart. My little girl truly is the strongest person I know.

She still needs occasional oxygen support but this is expected whilst her body recovers from the infection. The need for help is getting smaller with each passing day. Hopefully we will soon be able to go home together and get back to some form of normality.

The thing that’s causing me the most distress now I’d not being able to spend time with my wife and daughter as I should. In hospital there’s always someone else involved in Evelyn’s care and the lack of privacy is really getting to me. I simply can’t wait to go home, cook a meal, lock the door and go to sleep next to my wife. The time will come soon I expect and I am so excited.

Thanks again for reading and I would like to wish you all the very best for the year ahead. Peace and love to you.

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