Archie's Story

Hi my name is Archie and I live in Marple. I am an energetic 8 year old but when I was 4.5 months old I was diagnosed with high risk Hepatoblastoma, an extremely rare liver cancer, especially in a baby my age.

On the 29th March 2014 my mummy noticed a swelling on my left side whilst giving me a bath. Although virtually from birth mummy spoke to midwives and my health visitor and even took me to visit our GP a lot of times because I was being sick lots and lots of it, I used to cry most of the day and night and had other symptoms like night sweats and clammy skin. At nearly every appointment the GP told mummy “that babies are often sick and they do cry!” I am Mummy and Daddies 4th baby and instinct was telling them that something wasn’t right.

Although Mummy had taken me to the doctors that Monday morning both Mummy and Daddy thought I should go to see a different doctor at the Children’s A&E at Stepping Hill in Stockport due to the swelling, so Mummy took me down and Daddy stayed with my brothers and sister at home. The nice doctors in A&E examined me and as it was late they admitted me to the ward where I had to sleep in a big cot. The doctor took my blood and put a big bandage on my hand. A doctor came in and said I had a long rocky road ahead of me, but Mummy and Daddy didn’t know what she meant as cancer hadn’t even entered Mummy and Daddy’s mind as I was being treated for reflux and lactose intolerance.

The next day I had an abdominal ultra sound scan and because of what they saw Mummy and Daddy were told I needed to be transferred to the Oncology Ward, Ward 84 at Royal Manchester Children’s Hospital. After an MRI scan it was there that Mummy and Daddy were told I had Stage 4 Liver Cancer and would need chemotherapy and a full liver transplant.

After I had my wiggly fitted (hickman line) I had to go through 3 months of gruelling intensive chemotherapy where I lost my hair and my appetite but because I kept being sick I had an NG Tube put up my nose and down my throat due to the amount I was being sick and the size of my tumour in my tummy . Mummy, Daddy and the nurses fed me slowly through the tube so I could keep my weight up to fight the monster in my tummy. Although I was meant to stay at home between rounds of chemotherapy I was too poorly and kept having to be re-admitted which wasn’t nice as I missed my brothers and sister and it was very scary and got very upset when the nurses came to see me but if Mummy and Daddy were there I knew they weren’t going to hurt me. I had 3 lots of different chemotherapies Cisplatin, Doxarubin and Carboplatin and they made me feel very poorly . I also had many blood and platelet transfusions which my Mummy and Daddy used to call super power juice as I got smiles back afterwards and wanted to sit up and play.

In the early hours of the 21st June Mummy and Daddy had a phone call from the Transplant coordinator, to say there was a donor liver suitable for me. So we packed our bags traveled up to Leeds General Infirmary as this is where the Specialist Hospital is. I had only been on the transplant list for 5 days. I was in theatre for 14.5 hours getting my new liver. Mummy and Daddy said it was one of the longest nights of their lives. After my transplant I spent 3 weeks in Leeds with mummy and daddy whilst my new liver settled in. I had to go back to theatre a couple of times as my liver was not behaving. Whilst we were in hospital mummy and daddy got to learn about my new medications including Anti-Rejection Medication that I will be on for life.

Once I was transferred back to Manchester I was meant to have another two rounds of chemotherapy but it had to be cut short due to the effect the chemotherapy and my anti-rejection medication has had on my kidneys but over time they have recovered with extra fluids each day.

Since ringing the end of treatment bell on the 13th August 2014 I have had many hospital admissions due to my liver not settling in properly and have had to have some little operations to make it better.

Since having the chemotherapy and liver transplant I have been left with some not very nice side effects including high frequency hearing loss which I am meant to wear hearing aids for but I really don’t like wearing them because they feel funny, I don’t have any control over my bowel or bladder so I still need to wear nappies. My tummy doesn’t like a lot of food so I am fed through a tube in my tummy for 18 hrs a day/night, the Dr’s aren’t quite sure why my tummy doesn’t like a lot of food but I have special milk to keep my calories up . I get a lot of leg pain due to hyper mobility in my hips, knees and ankles so Mummy and Daddy massage them which make them feel better. Just recently I have been diagnosed with adrenal insufficiency due to the steroids I have been on since my transplant, this makes me get tired very easily. Since having my liver transplant one of the medications is an immuno-suppressant which lowers my immunity so I pick bugs and viruses easier and it makes it harder to fight off.

I have regular checkups at the 3 different hospitals I am under and sometimes I am not well enough to go to school but most of the time I am Mummy and Daddy’s cheeky monkey who likes to get up to mischief with my big brother.