My name is Robin and this story is about my daughter Laura and how I came to be involved with PACT. It isn’t a happy story but I want to tell everyone about what happened.
Our daughter Laura Chloe was born in November 2006 at Jessops in Sheffield. She was a healthy and happy baby but in April the following year she suddenly started being sick and poorly. We put it down to the formula milk we were trying to persuade her to drink but when she was sick with some blood in it the GP said take her straight to the Childrens Hospital.
She wasn’t taking any fluid so initially the Doctor said to try to give her a saline drink every 5 minutes while they did some tests. Eventually they were worried enough to say that Laura should be kept in for the next 48 hours. The following afternoon the Prof, the Doctor and the Registrar told us that Laura had got Acute Myeloid Leukaemia. We sat there in shock in the Prof’s office as he described the proposed chemotherapy treatment. We had absolute faith in them.
Laura had more blood tests and had tubes put into her hands. She was continually being pumped with fluid and blood by the nurses every 20 minutes so constant disruption. We had to give her distilled water into her mouth with a sponge on a stick but no success. She had a wee a few times and we had to keep the nappies to give to the nurse to weigh them. I went home again and got some food and clothes because we were still thinking of being in the hospital for a couple of weeks. Laura had been moved to the Intensive Care Unit for the night. She had been given her first dose of chemo at about 7pm from a black bag with a radioactive symbol on it.
We were woken by nurse at about 3am to tell us to come back to the Intensive Care Unit because there had been a problem. We met the Consultant Cliff Bevan who explained that they thought Laura had been choking so they had put a tube down her nose to help her breathe and to keep her alive. In fact she had just had the brain haemorrhage that would kill her. She looked so tiny and lost and helpless in the ICU bay and Cliff was looking for her blood pressure to rise to 50 but it kept falling to 45 or even 44 as we all watched the screens.
After a couple of hours Cliff knew there was nothing else he could do so he sent us back to the room in the ward and we started ringing people to tell them the worst outcome and to be ready for it. We went back to the ward with Cliff, the Prof and a lovely nurse called Lou and we talked about what had happened and what we would do next. We went back to her bed and they removed some of the tubes and pipes so we could hold her on our own laps on a pillow. She was still alive but only because the machines were making her breathe and making her heart keep beating.
Lou did some inky hand and foot prints for us but we declined the offer of photographs or to take her home with us. I went back to the room in the ward and we met Ian Maher the chaplain from Sheffield Hallam University. He was incredibly strong and polite and tactful and he went back to the ward to see Laura and blessed her and left her a blessing certificate. I saw him recently at the University and he always remembers us and Laura and what happened that weekend. The death of a child is such a traumatic event that nobody can forget it.
So within the space of 48 hours we had lost our beautiful baby daughter to leukaemia. I had never heard of PACT then or any other support organisation because we had only been in the hospital from Thursday evening to Sunday morning. We got a letter in the post a few days later from PACT offering their support and to be honest we ignored it because we had so much else to do. However very quickly we did become aware and involved as we wanted to channel donations of money that had been made from family and friends and work. My day job is as an IT manager so I wanted to help out with that side of things and I suggested setting up a website for the charity because there wasn’t one at that point. This was done in the summer and I also set up the first Facebook group and we started to flesh out the website with information about what PACT did and who some of people were.
We went to the Christmas party that year at the Niagara Club with Laura’s older sister but to be honest we didn’t like it and felt overwhelmed by all the other children running around. I have been every year since and now I love it and can feel proud to be involved in setting it up but like everything since Laura died it took a lot of time and tears and effort to see the brighter side. The following year I went on the Alton Towers trip and towards the end of the year I made my first public speech about PACT when Beryl sent me to receive some money from a local music society. I couldn’t open my mouth when it was my turn to speak and I literally fled the scene. Beryl wasn’t going to give up though and I have probably done about 20 or more of these events since all over the region and will always happily talk about the work PACT does and how it helps some of the other families I have got to know. I went to the bereaved parents coffee mornings for a year and that was a great way to meet other people in the same situation and to talk about what has happened and what might happen next.
I volunteered to be a PACT Trustee and served four years as a Trustee until this summer when it was time to move on and let some new faces in. Being an ambassador for PACT has taken me to places I would normally not have gone near and given me the confidence to stand up and talk about our fabulous charity to over 400 people at a time. The more fun side is I got to dress up as the queen in the Christmas panto one year and then as Lady Gaga the following year and I am often to be seen in my tiger suit at sports days and parties. I have also been a Christmas pudding and even Santa Claus at PACT House. Not many people can say that.
The piece I am proudest of though is the PACT film that we made 2 years ago. The best people to talk about PACT House and the support they get from PACT are the people who actually use it every day so we got a group of them together and let them do all the talking.
For reasons I would never have expected I have met and got to know some marvellous people whose strength and determination is unimaginable. After coming into contact with the Childrens Hospital staff and then the PACT team I have seen how the support services that are invisible to the vast majority of people are organised and delivered every day and what a positive difference they can make.