Why I Relay, Sinead's Story

01 Apr 2020

My name is Sinead Wood, mother to twin boys Oisin and Cillian.

You will have read Cillian's story a few weeks back but now I’m going to tell you OUR story, from my perspective, and why we will always help in the fight against cancer.

Cillian had had a cold for a while. He had lost weight too, but we thought that was because he was more active, playing in the snow, surely that's the reason he had such a bad cold! 3 weeks later he stopped eating saying he felt something was stuck in his throat and he couldn't swallow. I also noticed he wasn't sleeping and was sitting up in the bed every night. We took him to the doctor, he said it was a chest infection.

I asked his grandmother to take him out for the day as I felt Cillian was playing on it a bit. He couldn't even bend over to put his socks on. My mother phoned me an hour later and told me to meet her at the hospital. All of a sudden Cillian was critical! He nearly passed out in the car and couldn't move, talk or walk. The hospital thought it was pneumonia. I called his dad and said we might be in hospital a few days maybe he should come down to see him. He was hooked up to everything, we also realised when he lay down his breathing would drop and his heart rate would slow down. I asked the nurse was it really bad, she said he is the sickest boy we have right now and it's quite serious. They referred him to Our Lady's Children's Hospital in Crumlin, he went by ambulance the next day. We thought this was just for a test to see how bad the pneumonia was.

He was admitted to the heart ward. We thought this was purely because there were no beds anywhere else in the hospital. They did so many scans and tests within 4 hours of being there. A doctor came out and told us there was a mass pressing against Cillian’s heart and windpipe. Being naive, I thought the 'mass' meant fluid from the pneumonia. He told us that his right lung was close to collapsing due to so much fluid being around it. I asked him, ‘is that the same fluid around the heart’? He said No, that mass is a tumour and he has cancer!

I've never felt more numb in my life, my child was in the room next to me, sitting up, smiling and talking to his nurse about his brother while a doctor told me my gorgeous child has cancer!

Me and Cillian’s Dad couldn't believe what we just heard. Instantly we thought we are going to lose him. Cancer equals death! The doctor took us outside to get some air and told us to remain calm and strong, to wipe our tears and get ready for what's to come.

We made phone calls to our families. It was about 3am and my family came with pizza and hugs. Me and Cillian’s dad, Eoin, hadn't slept or eaten in 48hrs. We were given keys for accommodation and though I thought I wouldn't sleep, I did. I completely blanked out the news I was just told. 3 hours later we woke up, ran straight to Cillian’s room to find him sitting up, smiling, asking did we sleep well. Then we remembered, it hit us all over again, Cillian has Cancer!

The doctors came in and said he needs to go to theatre to have a chest drain put in to drain the fluid off his lungs. As Cillian's breathing was so bad they couldn't put him asleep for theatre, they gave him Ketamine instead. He wasn't allowed to lay down flat either as the tumour was pressing against his heart and windpipe. They said he would be in theatre for about 2 hours including recovery time. It was the longest 2 hours of our lives.

We had a phone call to come quickly to ICU. We ran through the long halls, tears streaming down our face. We could see newborn babies 2 days old, after having open heart surgery. We looked across the room and there was my baby. In and out of consciousness. Screaming and trying to pull this big tube from his side. We asked the nurse what's happening why is he like this. She told us he is fighting to live. He is trying to stay awake.

We met with Cillian’s team. They took us into an office inside ICU. They explained that at that time they couldn't do anything because his breathing and heart was so compromised. She said it was touch and go, if my Mother had not acted so quickly we would have lost him. It was up to Cillian if he was going to survive the trauma of having the chest drain put in with no anaesthetic.

It had only been a few hours since the drain was put in and already it had drained a litre of fluid! I couldn't believe it, one lung of a 7yr old.

They would closely monitor him for the next few days with a nurse sitting next to his bed 24/7. I didn't hear anything else she said, I couldn't see through the tears and I couldn't breath. I tried to concentrate, but I just couldn't. It was all too much. I had stayed pretty strong up till that point, not thinking it was that serious but then remembering my child was fighting just to stay awake, it’s an image I will never forget.

48hrs ago we thought this was just a chest infection and now we had to wear plastic aprons, a mask and wash our hands before we were allowed to see him. We were only allowed to visit half an hour at a time as he was so weak and needed his rest. He kept screaming 'I just want to walk’! Our hearts broke for him, it was awful. We didn't know what we could do to ease his pain.

Cillian was the oldest child in ICU, most of the children there were newborn babies. We met a couple whose newborn had to have open heart surgery just 18hrs after being born. We looked at them with sympathy as they did towards us.

Everyone's story is different but we all shared the same pain. Fear for our child’s life. Cillian was defying all the odds.

They had started him on steroids and he was well enough to leave ICU. He went on to stay in the heart ward. In less than a week a doctor came to us with a big smile on his face to tell us that the tumour had been reduced by 50%!! We were over the moon, everything was moving in the right direction. The chest drain had taken 2 and a half litres of fluid off one lung!! Because Cillian couldn't sleep lying down, physio came and gave him a special chair that he could sit in without having to lean back. He had slept lying across a table in front of him for the past 5 days. They gave him a Playstation, he got to see Oisin, his twin brother, for the first time in a week. Things felt less risky now. Then they said he would have to go to theatre again, he needed to get a temporary Hickman line put into his groin to start chemotherapy, it’s usually put into the chest but Cillian still couldn't be put to sleep to have that done.

His team came to explain all the side effects of chemotherapy and the risk of having the line put in. The doctor spent half an hour explaining what could go wrong and all the risks that would be taken.

The hardest thing I've ever done and I'm still doing, is signing a consent form with a page full of risks and lifelong lasting side effects to help save my child's life. It’s literally gambling with your child's life.

It was time to tell my 7 year old boys the reason Cillian was here. We explained with a lump in our throat and tears in our eyes that he was very sick, that he will be in hospital for a while, that his hair will fall out, that he won't be better till he is 10 years old. That he has Cancer....Oisin broke down, Cillian smiled and said….'Well it's good I'm in hospital then isn't it Mummy'

Cillian got his temporary Hickman line put into his groin. Chemo started and the chest drain is gone. It was time to move down to St. John’s Ward.

Because Cillian is at risk of infection while walking around the hospital he has to wear a mask for protection. We walked the whole length of the hospital to get to St John’s, it is right at the back of the hospital.

Once you pass through the double doors of the ward the kids can remove their mask, they are ‘home'.

We were shown around the ward, there is a relaxation room, a huge playroom and a kitchen for the parents.

Cillian was the new boy on the ward, it was the first time we had seen a child with cancer other than him. Some kids were playing in the playroom with big smiles, others with no hair, curled up in bed with a sick bowl beside them. Cillian looked at me with fear in his eyes.

We got to our room and my learning began. I had to learn all about his bloods Neuts, HB, white cells and platelets. I also had to learn how to clean and flush his Hickman, how to bathe him properly.

We are not allowed house plants, nor can we clean a room if Cillian is in it. We aren't allowed to be near building sites because of the dust, we have to avoid large crowds, we can’t spray deodorant, we cannot share food or drink. We cannot touch his vomit after being sick because his vomit is toxic after chemo. We have to check his temperature 3 times a day and if he is poorly we need to do it every hour. He can't go swimming and must always wear factor 50 sun cream and a hat. These rules apply for the next 3 and a half years. That's a lot to take in when your mind is already filled with so much.

He would be going to theatre again in a few days, to have his big Freddie (a line) put into his chest and also to have a lumbar puncture, which is chemo into the spine. But for now, he was allowed to settle in and play with the other children.

The day Freddie was put in Cillian was well enough to lay down and be put to sleep. I was so nervous and so was Cillian. He had spent the last month sitting up because he knew his body couldn't take the pressure of lying flat. Even though they said everything is fine it was so scary.

He was to be put asleep for the first time in his life. I didn't want to see that. We were very nervous so I asked my Mother to go with him. Again, more risks explained and more forms to be signed. A man came down with a bed and pushed him down the long corridors. My Mum and Cillian put their scrubs on and I gave them both a kiss.

Again, we waited. We sat by the big fish tank, waiting for the phone call to say that everything went ok. It did. It was so strange seeing a tube running under my child's neck and sticking out of his chest. I felt ashamed that I didn't know all children with cancer have these Freddies. Why don't people know this? Or maybe they do?

Was I just so wrapped up in my own little bubble that I didn't care to find out what they go through. I couldn't believe the first time I knew about what these kids go through is when it happened to my own child. It didn't seem right, we all know what adults go through why not our children?

Cillian didn't like people looking at his Freddie or touching it. He was covered in bruises from different needles, he was pale and sleeping a lot. They told us we could go home tomorrow. That scared me the most.

We are going home!

They gave us his prescription to take home with us, morphine, steroids, anti-sickness and antibiotics. I was so scared. Cillian couldn't walk, the steroids were so strong and effected him badly. We had to help him into the car and up the steps of the house.

My sisters had spent the last week frantically scrubbing and sterilising my house to have it 100% germ free.

It was a strange feeling being home. We went to give him his medicine before bed and I couldn't figure out the dosage. I panicked and broke down, I phoned the hospital and told them we need to go back I can't do this on my own. I don't know what I'm doing. They told me to relax and spoke to my partner Richie. They explained how to fix the issue. My Mother and Richie took over that night and handled the medicine.

Something so small and I was panicking already. How will we do this for 3 and a half years!!

I didn't sleep that night, not having a machine hooked up to him or hearing a beeping noise made me uneasy. Cillian slept for 14 hours. We are blessed, we have the most amazing friends and family and a community that has supported us in ways we will never forget.

So, when we heard about Relay for Life, we instantly wanted to give back, but we also wanted to get involved with an amazing group of strong people who understand everything we have been through.

We wanted to do something where we could have fun and join in force against cancer and to help future generations in the fight against it.

Relay is a family, I feel like I can totally be myself around everyone involved, I can cry without feeling guilty and I can laugh without feeling guilty too. The Irish Cancer Society gives so much to help families affected by this horrible disease and if our small contribution can help with their fight then we will do that.

I’m proud to be part of such an amazing community of strong people and this is why I Relay.