Mark Hazard
My Story features can be difficult for parents to share. FInding the words to express the emotions is hard enough and many contributors tell us that they have to relive the experiences in order to write about their situation, many find it too difficult. For others however it can be a very positive experience knowing that their words may help other families. Here we invited a father to give his perspective on dealing with his child's diagnosis.
Mark Hazard, recalls how it felt when his beautiful daughter, Millie was diagnosed with Retinoblastoma in 2000. Mark's words are honest and moving as he tells us what happened just a few years ago. These words are taken from a diary he kept at the time.
Thursday – Diagnosis
It was another ordinary day, I gave Lee a kiss goodbye got my bag and left for work. Things at home were really good, Lee and I were really looking forward to our wedding, my life seemed perfect. But everything was about to change. That day, Lee was taking Millie our 20-month-old little girl to the doctors. Lee had noticed for some time that Millie's right eye seemed to wander slightly, Lee had mentioned this a few times, but I was in denial there was nothing wrong with my gorgeous little girl.
The phone rang, "Hello" I said and BANG Lee was crying and in about thirty seconds she told me that Millie was blind in one eye and that she had cancer. According to Lee, when the doctor looked into Millie's eye he could see the tumour. He'd never seen the condition before but remembered it from medical school and thank God he did. Lee told me that they had been sent to Bristol Eye Hospital for a second opinion.
I put the phone down and cried like a baby. I have never felt so alone and so helpless in all my life. It took me about ten minutes to regain some kind of composure. It took some time to sort out work arrangements before I could leave, in that time alone I made lots of phone calls; sometimes crying, sometimes not.
I arrived at the hospital and you'd have thought I was the only one there with a problem. Well as far as I was concerned I was! A nurse took me to where Lee, Millie, my sister Sue, Kerry (Lee's best friend) and her daughter Emma were. The Consultant was obviously a bit tired. As I opened the door I could see Millie sound asleep, she looked gorgeous. "Its cancer" said the Consultant "and there's nothing we can do". I just lost control, Lee, bless her tried to console me with all what she's been through and now there's me losing it completely.
"We are 70% certain Millie has Retinoblastoma which is eye cancer, she has lost he sight in her right eye and that will never come back. We have checked her left eye and are fairly certain that that one is clear. However we will need to do an E.U.A tomorrow to make sure. If we are right Millie will have to have her right eye removed. She will lead a perfectly normal life," she said. What's an E.U.A? I thought and what's normal about having one eye. I said, "You are not doing an E.U.A and you're not having her eye. I want a second opinion and a third" With that I couldn't take anymore I opened the door and left.
I just sat down and broke my heart. Cherry one of the nurses came and found me, she was a star. She explained it all. She said that an E.U.A was an examination under anaesthetic at least that cleared one mystery up. After about ten minutes I went back in. We asked lots of questions, what the answers were I'm not really sure. Its funny all I wanted to do was get Millie away from these people who wanted to take her eye out.
On the way home Lee and I talked a lot, we also talked on the mobile a lot, it seems every person I told, told ten people more, everyone wanted to know what was happening. They were all shocked; there were lots of tears.
We arrived home and Millie was her normal self, playing and being generally being a tearaway toddler, bless her. It was different now, we watched her play but instead of laughing at her we were breaking inside. We were looking for signs. Now we knew what we were looking for is was easy to spot. Her head would move slightly right and her left eye would compensate for her right eye. How could we have missed all this? But you do, Millie had already adapted and compensated for her right eye, I don't think we will cope as well as she has.
The Following Friday – EUA
The next Friday was a big day for us; Millie had to have her E.U.A; at least I knew what it meant this time. Millie couldn't have any food or drink that morning. We left the house and arrived at the Eye Hospital, we met Cherry at the reception. More news to deal with – the cancer may be in both eyes. We were just numb we had just got our heads round losing one but both? It was just too much to take in.
I went outside and met Lee there I was again in a right state expecting Lee to look after me, a bit selfish ah but that's blokes for you. Fix a roof, mend the car, dig the garden but as soon as there's anything wrong with the kids we're in bits! We had to wait for about an hour and god that was a long hour. We didn't know whether we would be facing life with a daughter with one eye or with none, it was a living nightmare.
Mr Marcoumb the top surgeon at Bristol came to see us. He said, "Yes I can confirm that it is cancer and I'm 80% certain that it is Retinoblastoma. The only reason I'm a little uncertain is because of the shape, therefore we will be sending you to London to see a Mr Hungerford he's the best there is" he told us I'm going to make an appointment ASAP. Hang on a minute what about her left eye "Oh I'm sorry" he said, "Yes everything is ok with her left eye I'm a 100% certain".
Well you'd have thought we'd won the lottery, we cried, kissed and jumped for joy. Lee, me and all the nurses were overjoyed, armed with a drink of juice and a packet of cheese and onion crisps we went to see Millie, God we were happy. If there's one thing we've learnt it's that you celebrate each victory as they come because they help you through the bad times, and there's enough of them.
Tuesday – Words of Comfort
With all the arrangements done and our appointment fixed with Barts (London hospital) we left for London. The journey up was ok and we arrived at Lee's Mums at 8 o'clock. Some people have a knack at saying the right thing at the right time and Angie certainly did that day. She gave me and Lee a kiss, took one look at Millie and said "How on earth did you notice anything was wrong, she looks perfect, you were so good to notice that Lee". Lee's mum always said things like that, the right things at the right time. Lee really needed her mum and it showed poor thing, she was really suffering.
Wednesday – Confirming the worst
I felt much stronger now the strongest I'd felt since it all started.
Everyone was really nice, they all knew our names and they all knew Millie's. We were introduced to doctors, nurses, play specialists and even the tea lay! After about two hours Millie had her eye drops put in to dilate the pupils. Lee and I had the same so they could check our eyes. They wanted to see if Millie's condition was hereditary or not. We were both clear. They got Millie ready for theatre and once again I was going to take her. You never get used to taking your baby into the operating theatre and having her anaesthetized, it destroys you.
Afterwards Mr Hungerford came to see us. He started by asking what we already knew, I told him we've been told it was probably Retinoblastoma "Yes I am inclined to agree" he replied. We were told that Millie has no sight in her right eye "Yes I agree" he said and we were told that Millie will have to have her right eye removed "Yes I'm afraid that is also true" he said. Do you know what that man never looked at us once, Mr Hungerford had been doing this for about 25 years telling parents their babies would lose an eye, both or worse and he was still finding it too much, poor guy fancy having to do that on a weekly basis?
Eventually he did manage a smile though he was asking how Millie was in herself, was she sleeping ok, eating and was she withdrawn. We didn't need to answer Millie had climbed onto his crossed leg and waiting for a horsy ride. Everyone smiled "Yes I can see she's fine" he said. He went on to explain that the cancer was fast spreading and that the biggest danger would be to try and save the other eye so he would like to remove the eye as soon as possible. Possibly next week, we were both expecting it but what a shock; you just hope they'd got it wrong. They hadn't, and now we had to deal with it.
Lee and I talked to each other a lot, but at the end of the day what do you say? We knew what she had and we knew what was going to happen, how we were going to cope we weren't so sure. We handled things in our own different ways. Lee did housework - while she was busy her mind wasn't. Me? Well I just wanted to spend time with Millie, I just talked to her. She was only 20 months old and of course she didn't understand but then neither did I, but it helped.
Monday – A Worrying Delay
The phone rang. It was Bart's London; they were ringing to tell us Millie would be having her operation. Penny, Mr Hungerford's secretary told us; that because they had problems finding a Paediatric Anaesthetist Millie's operation would be in 11 days time and not in 2 days as we'd expected. She said there was nothing she could. I disagreed, there's always something you can do.
We had been told that Retinoblastoma was a very aggressive and fast spreading cancer and there was no way we were going to wait 11 days. I asked Penny for the number of her head of department, which she reluctantly gave to me. I phoned them and told them my story and explained my worries, but I was getting nowhere. I must have spoken to about eight to ten different people and although they wouldn't or couldn't help they all wished me well and told me to keep trying.
I didn't know who to ring then someone suggested my MP. So I called Steve Webb. I first spoke to his secretary and told her Millie's story. Steve was in London and as soon as she could contact him she would and someone would get back to me. My head was it bits. We both knew that Millie would lose her right eye but we didn't expect to be fighting for it to happen and it just didn't seem right.
Steve called back about an hour later and I explained our story. Steve told me to leave it with him; he would make some phone calls and see what he could do. He assured me everything would be ok and he would ring back soon. It took just ten minutes and one phone call! Millie had her appointment in two days time. Six hours I was on the phone, Steve Webb ten minutes. So we won the battle, but we didn't feel like winners.
Thursday – The Operation
We started getting Millie ready for surgery it was all going so fast so much going on that we couldn't really think. I picked Millie up and followed the nurse; Lee was right by my side just where I needed her. Millie had been under anaesthetic a few times now what with all the tests and the CAT Scan to make sure she didn't need Chemo, and thank God she didn't. But this was different this time she would come back different. I held her in my arms and they put the mask on her she cried and kicked and within seconds she was gone.
Lee and I both kissed her told her how much we loved her and asked them to look after her. What a silly thing to say but what else do you say? It was a living nightmare that you think will never end. But it does and it also gets easier. Although at the time you never think it can.
We heard Millie cry and what a shock the top of her head and half her face were covered in bandages this was a pressure bandage to stop the swelling from the surgery. We all wanted to hold her but I got there first. Selfish bloke, eh? But I just cuddled and kissed and held her. The operation had gone well and as soon as she was well enough we would be transferred to the Royal London for the after care.
Friday – Post Op
The next morning Lee and Millie were both up and eating breakfast. Millie looked and seemed much better. For the next few hours not a lot happened and I told Sue and Lee to have a break. They were gone about 20 minutes when a nurse came round and said all matter of fact that they would be taking the dressings off. Well my face must have said it all. They asked me if it that was ok or would I rather wait until Lee got back. No it's ok I said now will be fine. I was really nervous but you always imagine the worst and when they took the bandages off it wasn't that bad. It just looked like she has a massive black eye; you couldn't tell that the eye was missing. When Lee came back she was more shocked, she said it looked like half her face was missing she took it quite hard. The nurses showed us how to clean the socket and look after it and then right out of the blue they said do you want to stay or go home. We said home but I wished we'd stayed one more night.
It was like well, we've done our bit we've shown you what to do here's your baby back, minus one eye, all the best see you again, unbelievable. Anyway we arrived home scared, shocked and tired. But I think it was all too much we just needed time to adjust and to try and get our head round it.
Saturday - Recovering
We had a good nights sleep that night. The next day we had lots of visitors we made sure all the kids saw Millie and of course there were tears. Most friends came but some stayed away and funnily enough it was the men who stayed away, it's hard for blokes. You're brought up and told boys don't cry and seeing a kid with her eye missing made you want to cry. No-one knew what to expect or how to handle it. The next few weeks were really hard but we managed.
Everyone, friends and family were (and still are) brilliant I don't know how we would have coped, it seemed everyone wanted to do something a lot of fund raising was done for Millie which was great and all that money has been put away for Millie for when she's older. We did buy Millie one thing though a great big playhouse for the garden. It is brilliant she will have years of fun with it.
With all this going on Lee and me still had our wedding to plan, to be honest at the time we both never felt much like doing it. But we did want to get married and we needed to get on with a normal life. Millie's black eye was going down by now and you could tell she had lost her eye which at times was hard. People we didn't know just tended to stare. They don't mean anything by it their just curious I suppose. But sometimes it did get on your nerves it bothered Lee more than me.
Life goes on
After two weeks the CLIC nurse called round to see us just to check everything was going ok and she couldn't believe that we had coped all that time without any medical back up or support. Bristol thought London were looking after us and vice versa consequently we had no help, it's good to talk as they say! Anyway Wendy the CLIC nurse was a great help she helped us out with bits and pieces and also because of the wedding pushed for Millie's false eye to be fitted as soon as they could.
 Our wedding was to be on Saturday 10th August and Millie had her eye fitted the 2nd of August what a fantastic day that was. That was the day we got Millie back I just can't tell you what that felt like but it was a good feeling. We didn't tell any friends or most of the family so on the wedding day when they saw Millie with her new eye it was just great. It made the day even better.
When all this first started I never thought I could be happy again, I never thought anything positive could come out of it, but it did.
Fundraising Manager Linden Smith adds "Millie is a wonderful and inspirational little girl. I'm lucky to have met Millie, Lee and Mark on several occasions in relation to fundraising events. Millie has been the inspiration behind every single event. She is a confident and loving person, always keen to help and she has certainly done that for the Childhood Eye Cancer Trust. Pictured here with Linden Smith and members of the Bristol Fly Fishing Reservoirs Association - supporters of the charity - we would like to thank Millie for all of her help over the years.
We would also like to thank Mark for sharing this very personal and heartfelt experience.
|
Donate Now |
|
 
|
URGENT Travel update for Annual Day |
|
click here for information
|
Advice for concerned parents |
|
Click here for what to do if you think you have seen a symptom of retinoblastoma.
|
|
