Its been a difficult few months.
In early September, our precious little girl was admitted to hospital for a procedure called “high dose chemotherapy with stem cell support”. In simple terms, Evelyn was to be infused with a drug which has similar effects to the gases used in the trenches then have stem cells transplanted into her system to encourage recovery. In simpler terms, we were about to knowingly walk into hell and set up camp for a while.
We arrived in hospital on Sunday evening with a view to getting started the following morning. We had been told to expect a rough few weeks but what we anticipated and what we got were two very different things. The drugs went up as planned at around 0600 Monday. Compared to previous chemotherapy sessions which involve the drugs being pumped in continuously for 72 hours, this seemed like a breeze as they only needed to be infused for a few hours a day. By day five, we were breathing sighs of relief as none of the side effects that had presented previously were rearing their ugly heads. By Saturday, the last infusion was being prepared and we were looking forward to a day off before the stem cells being infused on Monday. Despite us being in hospital for a week already, the doctors kept referring to Monday as “day zero”. We very quickly found out why.
The solution used to preserve and suspend stem cells has a distinct smell. The infusion of these immature cells took no more than an hour but in less time than that, the whole room smelled very strongly of sweet corn. Not the nice, tasty grilled smell you get at a barbecue but the strongest heavy stench of tinned corn that’s been left open for a few days and there we were, isolated in a sealed room inhaling this thick stink with every breath. Day zero came to an end and we soon began day one.
Things seemed ok at first until Evelyn vomited a little of her breakfast back up on the bedsheets. “Not to worry” I said as I changed the bed with practiced ease. Within that same day, the bed was changed four times along with my outfit. The evil side of the treatment was slowly revealing itself. Alongside the vomiting, our princess began with severe diarrhoea.
The next few days consisted of us fighting to keep fluids and food inside our girl. For every ounce she ate, two would come back. My wife and I, still taking turns staying over, felt helpless as there was nothing we could do to help. Whether eaten or force fed through a nasal feeding tube, the symptoms persisted. By day three, Evelyn’s temperature rose to over 39 degrees. It stayed this way for over seven days with absolutely no reprieve. Our girl was at the lowest we’d ever seen her and it was only getting worse.
By day nine, Dr G prescribed a form of intravenous nutrition called TPN. This bag of nutrients and fats was pumped directly into Evelyn’s bloodstream and provided what she needed to keep fighting. This process needed careful monitoring because the chemotherapy drugs had compromised not only the immune system but also her renal functionality. If fluids were allowed to build up, liver and kidney failure were a very real risk.
Every other night I went home. As soon as I crossed the threshold and thought I could relax, the fear and tears found me again. I couldn’t eat, I couldn’t sleep and I refused to see any friends or family. I told people I had to stay alone because I couldn’t risk Evelyn catching any illness from me if I got poorly, in reality I couldn’t handle seeing a friendly face. I had never sunk as far. Had I not had my girl to keep fighting for, I’d have found a way out. The strength that Evelyn showed every day by keeping herself fighting gave me the strength and desire to fight too. I was stuck between giving up and pushing myself to see just how much I could take. It was my little hero that helped me push.
It was a month before we saw any improvement. In that month, my brave little girl endured the worst pain, the highest fevers, the hardest time she could but she did it. Although it took around fifteen blood transfusions, more opiate medicines than we’ve seen before and all of the strength we had she came through. We were finally allowed home. We had walked our daughter through the gates of hell and it was her strength and resolve that got us through and out the other side.
My wife did an exemplary job of keeping the house and related affairs in order through this whilst I used some of my evenings at home to bring what money I could in. I had to take the time off work unpaid from a job that I soon after quit because of my managers attitude towards my family. Before this treatment began, I arranged a meeting with him to ask whether he would want a sick note for my absence. After explaining the process and side effects (I told him they would be the worst yet) and that we would be literally moving into hospital until it was over, he had the audacity to ask whether “I needed to be there”. Instinct told me to drive his face into his desk but reason won and I calmly explained again and made it clear that I would not be attending work for this period. It’s a shame really, everyone else in the job was fantastic. I had support from the directors down to the newest colleagues. The only one that seemed to not give a shit was my boss. Would you believe he phoned me a few times to ask when I thought I’d be back, only twice from five calls did he ask how Evelyn was. I waited until Evelyn was stable and on the climb and resigned. Initially I felt guilty but then remembered just how that smug, condescending prick made me feel.
Within a few weeks of getting home, we were able to get Evelyn eating proper food and drinking her milk again. Her appetite came back better than ever, our girl ate and drank like never before. It was amazing to see her doing so well. She played and we went on as many days out as we possible could before the next step in treatment. I was able to find work quite quickly thanks to some friends and soon began my first experience of a Monday to Friday job giving me full weekends with my favourite people.
Last week, we started the radiotherapy stage of treatment. This step involves Evelyn going to hospital daily, going to sleep with a general anaesthetic and being zapped with radiation at the site of the primary tumour to ensure any trace cells are destroyed.
Compared to previous treatments, this has been a breeze for all of us. The only side effect we’re feeling is fatigue. Waking at 0500 every day, driving to hospital then heading for a shift at work is taking it’s toll on me heavily. I can’t imagine how Evelyn must feel but she’s kept her strong demeanour and playful attitude. It’s only now at the end of week two that she’s began being a little sick but compared to the last stage, it’s a walk in the park for her. She’s usually allowed home by midday so has a short nap and a full afternoons play. She’s even slept through the night a couple of times which has been bliss for me as I get to sleep in my own bed as opposed to the floor.
I’m amazed at how well my princess has done in the last months. She’s amazed me with her resolve and determination and I’m immensely proud. If it wasn’t for her will to keep going, I would have fallen but she kept me up without even realising. We’ve got one week of radiotherapy left to go then we should hopefully have a nice family Christmas at home (please pray that nothing crops up).
My apologies for not updating sooner, as you can imagine it’s been a rough time and I’ve had many plates spinning at once. I’d like to thank you for your love and support but mostly, I’d like to thank you for taking the time to read. As I said in my first entry, writing is a form of therapy for me through this. By reading, you’re truly helping and by responding, you’re helping even more.
If I don’t post before the holidays, I hope you all have a wonderful festive season filled with love and fun. Here’s to the new year.
Love to you all x