Hi there, my name is Jon and this blog is centred around my daughters journey in the last few months.
In April, at 9 months old, my beautiful daughter Evelyn was diagnosed with Neuroblastoma.
Neuroblastoma is a cancer that affects the nervous system in children. These tumours can present on the spine, neck or in Evelyn’s case the adrenal glands.
This disease is aggressive and is almost unknown to those that haven’t been affected either directly or indirectly.
We’ve had a rollercoaster of a journey so far, it seems like we have adapted to the changes but every so often something else is thrown into the mix that adds to our routine. We’ve taken to calling this “the new normal”.
Everything started in march when we noticed a slight drop to Evelyn’s right eye. It appeared as if she had bumped her head and simply had a slight swelling. After seeing no change to this for a few days we decided to visit the GP who then referred us to Oldham Hospital for diagnosis. Upon arriving at Oldham at around 1800 on a Monday, we waited until midnight before being seen by a doctor in this fetid hellhole.
The doctor was very friendly and tried her absolute hardest to convince us that Evelyn had orbital cellulitis (an infection of the dermal tissue around the eye). Despite clean blood work and the absence of a temperature, this medical professional would’ve put her mortgage on this being fixed with antibiotics. In order to prove herself right, she wanted to admit us to hospital but couldn’t offer us a bed so instead tried to transfer us to another site to see a specialist in the morning (by this time its past 0100 and we had a very unhappy baby). Having a touch of common sense, I protested and asked that she make the arrangements for us to see the specialist and we would head home and visit in the morning. We left the hospital and were able to get our princess into bed by 0300 (not before taking a few photos of the discarded medical equipment, coffee cups and tablets that were strewn over the floor of Oldham’s children’s centre).
The next day came and my wife made the trip to see the specialist with Evelyn. This gentleman was an ophthalmologist and couldn’t have been any more professional despite not being a paediatrician. He played and laughed with our girl whilst looking her over, he even gave her a pupil gauge that she wouldn’t let go of. He was also unable to offer a diagnosis so made arrangements for a CT scan. He couldn’t tell us when the scan would be but we would find out via post. With the feeling that progress was being made, my wife and Evelyn headed home.
Fast forward a week and we hadn’t heard anything about the scan so decided to go straight to the Royal Manchester Children’s Hospital. Clean, modern and full of life, this place felt a million miles away from the dirty and dank corridors of Oldham. We had a short wait in the accident and emergency department before being admitted to ward 85, a general children’s ward.
After a few tests and examinations by more doctors and specialists than I can remember, we were visited by the man that would become our consultant. This man (I’ll call him Dr G) took one look at Evelyn and appeared to already be making plans. He had a good look over her notes and immediately cancelled an MRI scan that was scheduled for the next day, he amended the CT scan that was booked to be whole body as opposed to just the head. These scans were booked almost overnight which reassured us that we had made the right decision moving to this hospital. Dr G took his time explaining to us why he didn’t need an MRI and at this point we found out that he is a paediatric oncology specialist. He thanked us for our time and told us that he would see us the next morning
The word oncologist immediately filled me with terror. I spent the rest of the day and the entire night trying to convince myself that there was no way this was cancer. I told myself that oncologists deal with all manner of tumours and a tumour doesn’t necessarily mean malignancy.
The next day came and by 1200 we had had the scan. Dr G came and sat with us and explained that this was indeed cancer. A tumour on the adrenal gland had sent cells into the bones which had then caused this lump on Evelyn’s eye. That’s about all I remember from that interaction. I could hear the shards of my world crashing down around me. I was shaking, crying, swearing and looking for somewhere to place the blame. My wife was clearly going through the same run of raw emotion as me and all we could do was hold on to each other and our girl.
I took myself outside to make a promised call to my family. I couldn’t speak, I blubbered down the phone and somehow managed to form the word cancer. Within an hour, my family had gathered at the hospital along with my wife’s to offer their support.
Soon after heading back up to the award, Dr G came to see us again. He told us that he needed a biopsy of the growth on the eye and bone marrow. He explained that general anaesthetic would be the best option as it’ll immobilise Evelyn and keep her out of pain. He went on to tell us that a Hickman line would also be put in. We had never heard of this particular piece of equipment but in effect, it offers an access point for the doctors and nurses to administer medication as well as taking blood etc. This line runs directly into a vein above the heart so allows very fast uptake of anything that goes in. At first it seemed like a horrible thing to agree to but we would soon learn its value. All of this would happen in the next few hours
I took Evelyn into the prep room myself and couldn’t hold back the tears as they injected the anaesthetic. In a matter of seconds, my happy and smiling peanut went limp in my arms I sobbed as I was asked to hand her over to the doctor and leave the room. The nurse that accompanied me put a hand on my shoulder that offered some comfort. I took the opportunity to wash my face and look as normal as possible before rejoining my wife. She asked how it went, I tried to make out that it was nothing and played it off as calmly as I could. The surgery would take a few hours so we joined our families on the ward.
When we were told that we could see her, we practically ran to reunite with Evelyn. She was understandable grumpy but relished in the cuddles and love that she felt. After hours without food, she managed to eat and drink and settled into a short nap. During her sleep, we met the Macmillan nurse that was assigned to us. Nurse S spent a long time explaining things to us with Dr G and they both took their time to make sure we understood what was being said. Again, I have little recollection of what was said, everything just appears as a big black blur when I try to remember details. Nurse S explained that we would be moving to ward 84, the children’s cancer ward. I immediately had visions of sad, thin children with no hair in a gloomy space. I couldn’t have been any farther from the truth.
Upon walking through the doors to ward 84, I immediately had to dodge a young boy on a scooter. Yes, he had the trademark bald head of a person undergoing chemotherapy but there was no sadness, no gloom but instead he had bright eyes and a smile. The ward is covered in colourful pictures and gives the immediate impression that it’s not a bad place to be, in fact it’s a great place to be given horrible circumstances. Evelyn spent the night on the ward with both of us whilst we lay awake digesting what information we retained through the day.
The next day, Dr G came to see us again and explained that the biopsy would allow him to stage the severity of the cancer properly and we would know in a weeks so. We were allowed to go home, our girl looking like she’d gone 3 rounds with Tyson and asked to return in a few days for another type of scan.
The few days at home were some of the worst of my entire life. There we are, playing with Evelyn, carrying on as normal with this dark cloud following us, looming overhead to signify that life had changed completely. At this point we had limited knowledge to family and our closest friends.
We returned to the hospital for the scan and all went without incident. We returned home the same day and awaited our next appointment with Dr G.
At our next meeting with the consultant, he told us that Evelyn was classed as “high risk”. Again, I broke down, not knowing how to react or what to do. At this point, Dr G told us about a trial which Evelyn had met all of the relevant criteria to be entered into. This trial compared two methods of treating this type of cancer but offers something that isn’t normally offered in the UK, immunotherapy. Immunotherapy will train Evelyn’s cells to recognise malignancy and get rid of it long before it can become a problem. Lots of families choose to head overseas for this course which usually has a cost of around £200,000. We thought about and discussed the trial and decided to opt in.
Within a week, we had started our first round of chemotherapy. These treatments last a full week and require Evelyn to be hooked up to machines for the duration. The drugs used, really take the energy out of Evelyn resulting in numerous infusions of blood products and plenty of stress along with it. When we are at home between chemo sessions, she has a daily injection which I prepare and administer. We need to monitor her temperature closely as any rise in temperature require an immediate trip to hospital because of the high risk of infection, this has happened twice out of the three chemo sessions Evelyn has had. In effect, she is in hospital for two of every three weeks.
This brings us to today. We’ve now got two sessions of chemotherapy to go. In the last month we have set up a Facebook page to keep people informed of Evelyn’s status. This page has skyrocketed to over 1100 followers and has also inspired people to help. Friends have organised fundraising events to help with the high cost of traveling to and living in a hospital and kind messages are coming in from all over the world.
We owe our friends and family for their unending love and support.
Tomorrow, we have an ultrasound scan and bone marrow biopsy so that Dr G can see what progress has been made. I’ve never been so excited and terrified at the same time before. I just hope good results are the order of the day.
Assuming she only needs the planned five rounds of chemotherapy, we will move on to the next step in treatment which is surgery. In all, treatment will last a minimum of 18 months.
Thankyou for sticking with me through our story. This blog will be used as my personal outlet, a pressure valve if you will to help me through this on a personal level. I’m not one for talking to people about how I feel, I’ll usually try to brush things off but the last few months have been too much. I’ve never written before but I suppose that it will get things out of my head and onto a page which can only help.