Raj’s treatment took place on Kamrans Ward at John Radcliffe Hospital. Chemo can be horrendous. Our experience of it was a pretty smooth one. Raj loved the ward. He didnt mind being there as they had a playroom with lots of toys. They had lots and lots of dvds. I swear I watched Jurrassic Park like a million times on the ward.
Over the years you meet so many people. From doctors to charities to other patients. I wanted to share with you all some of the amazing people we met while on the ward. We were all part of a family we didnt want to be part of. But none the less oncology famillies are the kindest and most amazing support.
One of the drugs Raj was on was called Cyclophosomide. This drug was given daily and didnt take very long to administer so we were allowed to stay off the ward. During this chemo week we were allowed to stay across the road at a charity house called Clic House. There were 5 bedrooms and therefore 5 families could use it for sleeping, cooking in and there were lots of toys for Raj.
The house was run and managed by a charity called Clic Sargent. The idea was you were close enough so you could get back into hospital asap if there were any reactions to the drug. In Clic House is where I remember our time with Henry Allen fondly. Raj was younger than Henry. Henry was such a sweet boy. I remember so many times Raj would go to grab the toy Henry had. You know them embarrassing moments, where your kid is the naughty one, grabbing at toys 🙄. Henrys mum Dawn was always sweet and would say let Raj play with it and Henry lovingly would let him 😊. Henrys time here was also brief. He had neuroblastoma, which is a really tough cancer. Sadly despite lots of treatment Henry gained his angel wings at the young age of 4. Henry’s mum Dawn is amazing and set up the charity The Henry Allen Trust alongside her husband. This charity fundraises to allow for famillies in similar situations to receive treats. It was in 2014 I had put up a facebook status asking which I should buy for Raj’s birthday pressie, a Xbox or Ps4 Dawn messaged me and said Suki please let me buy it for Raj. I remember saying no, thats too much. If you want, just make a contribution. Dawn wasnt having it and she bought Raj his Xbox. He absolutely loved his Xbox. Thankyou so much Dawn. Dawn also treated us to weekend in London recently in Jan 2018. Raj watched Aladdin and had a trip to Hamleys. We made forever memories. ❤
Evie Mae & Daniel Fagan
We were on the ward so much you made friends with other famillies. One of the cutest boys we saw often was Daniel. Daniel was adorable and mostly we would see him rolling through the corridors. He had one of those infectcious smiles 😊. I remember Daniels grandad being with him lots also on the ward. He would always make conversation and help pass the time. Again Daniel was another boy who gained his angel wings a couple of years ago now. 😔
Alot if the time we would be be in a cubicle, our own room essentially. In the room we would have a tv and it was all fairly comfortable. This is where I remember little Evie Mae mostly. She was tiny 😊. She would just randomly stroll into our room quickly followed by her mum apologising. She was adorable though and Raj thought it was so funny that she would wonder in at her leisure. Im so pleased to say Evie Mae is doing really well. ❤
Chemo can have so many side effects. Raj was on 5 different chemo drugs, All bringing their own issues. He had reduced blood counts throughout his treatment. When his platelets were low Raj would get nose bleeds. Platelets make it difficult for your blood to clot. He had to have his platelets replaced on 2 occasions. He also had hearing tests to ensure the drugs didnt make him lose his hearing and eyesight tests as you could also start to lose your sight. Great huh! If the cancer doesnt kill you, you may lose your hearing or eyesight instead. Chemo is poison at the end of the day. Raj used to be potty trained at age 2 but due to this difficult time period I had put him back in nappies. Everytime I cleaned Raj or wiped his urine I had to wear gloves as the drugs were also toxic to my skin if they came into contact with them.
It was coming upto Raj’s 3rd birthday. Raj’s birthday was on 23rd December. We couldnt disrupt Raj’s schedule so were told either we would need to be in hospital for chemo on Raj’s birthday or spend Christmas in hospital. We chose to be at home for his birthday so Christmas 2013 was spent on the ward. The ward made a massive effort to give the kids a great experience. Father Christmas even visited! I remember parents were allowed a free lunch that day also as it was Christmas. It was courtesy of Sodexho (a catering company). It was so delicious I think I opted for a sandwich in the end. 🙄
Raj managed to escape his entire regime without any infections. Things were amazingly smooth but Raj looked sick, his hair fell out and he looked weak. Was he heck though, he was full of beans! He was crazy….just buzzing with energy. It felt like God was watching over us. How else could he avoid all those side effects and walk this path with such ease. 🙏
We had a month or so to go and we ran into another family. This time we were on the bay. 4 beds in one huge room. Curtains could be pulled around the bed for privacy, but that was it. Next to us was little Sam. He must have been about 1 years old. He also had a brain tumour, an ependymoma. Oh I must mention now, Raj’s tumour sample was confusing. They said it looks like both ependymoma and glioblastoma 🙄. Basically no answers. Could be either. Anyway, back to Sam! This is where I met Sam’s mummy Marie. Marie was like omg! Its Raj! She was so happy to see us. She said my dad saw you on the documentary that aired. I cant wait to tell him we met Raj. She said her dad had said I saw this boy called Raj. He did amazingly well. If Raj can do it so can Sam. It was so nice to hear Raj’s story gave others hope.
Sam’s story thereafter became similar to Raj’s. Raj would replase and then so would Sam. I became great friends with Marie. We are so similar. We were both sort of like a dog with a bone 🙄 Always researching, always pushing for treatment. I would tell Marie, right go for this treatment…or Raj is doing this. A few years in, Sam progressed quicker than Raj. I remember ringing Marie and then it was her turn to help me get my head straight. She knew what to do.
Sam had every thing from chemo to protons (which Marie and her hubby Mark fundaised £45k to have privately in Germany). She even flew Sam to Memphis to St Judes Childrens Hospital. One of the top hospitals in world. It wasnt meant to be in the end and Sam passed away last October. He will be forever 6. Marie, is still one of the strongest women I know. She kept telling me, Raj can do it Suki. Raj is different. She still supported me. Oh how I wish we could have done it for you guys Marie. Now Marie, is one of my friends who supports me through my grief. Who truly understands my pain 💔
In April 2014 we finished chemo. It was finally time to get that line out of Raj’s chest. Wow the freedom that would bring. You couldnt get it wet. I used to cling film the lines when Raj had a bath. It was such a pain but necessary. Wet lines could cause infections. We stayed at Clic House the night before they removed the line. This boy is such a nutter. He was jumping around on the bed when he fell and smacked his nose on the wooden edge of the bed in the morning before the op. Only my child. Look at the state of him.🤣.
Raj had a such an aggressive tumour, they always thought it would come back within months…….but then he broke the trend. We got 19 blissful months cancer free 😊❤.