How One Frightening Event Can Change Your Life Forever............. (Life Changing Events)

Name: lel1969

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Product:	Life Changing Events
Date:	23/05/08 (155 review reads)
Rating:

Advantages: Teaches you what's important in life

Disadvantages: Very sole destroying

Tumour - a word that sets alarm bells ringing in most people's ears. To me it means cancer, therapy and ultimately death, and that's all I could think about when I was told 8 weeks ago that my 10 year old daughter Erin had a large tumour in her tummy.

It all started with a cold, would you believe. Erin had been up most of Sunday night and when she got up in the morning her red nose made her look a bit like Rudolf!! I decided to keep her off school because my sister was getting married in 2 weeks and Erin was to be the bridesmaid and as far as she was concerned it was her day and not my sister's!!! She obviously wanted to look her best and wanted rid of her cold, so I thought a couple of day's rest a home would help. Monday night and Tuesday night were both pretty sleepless too and on Tuesday night she mentioned a sore side but when she got up in the morning it was ok again, nevertheless I decided to take her to the doctor on the Wednesday anyway. He just took one look at her and agreed she needed antibiotics for her cold, but wanted to feel her tummy just to be on the safe side. I could tell immediately something wasn't right, just by the look on his face. He explained that he was able to feel Erin's kidney and he shouldn't really be able to feel the kidney of someone as young as Erin. He reassured us that it was probably nothing to worry about, perhaps an infection or swollen glands causing the kidney to feel enlarged, but he asked us to wait in the waiting room while he phoned the paediatric ward at our local hospital. Already the sheer panic was setting in, Erin was upset and I was trying to stay calm for her sake, but that was easier said than done.

Five very long minutes passed and we were called in again. He asked if we were able to go straight to the hospital as the paediatrics wanted to check her over just to make sure all was well. That was it I couldn't hold back the tears any longer, we were both crying now!! My GP is very good though and very kind and sympathetic and wished us all the best and asked us to keep him informed.

I couldn't think straight, it was 12.30pm I was supposed to be picking my son up from school for lunch, I was also supposed to be going back to work and dropping Erin off at my mum, but she was at the dentist and I couldn't get in touch with her, I couldn't get my husband, Scott, either as he was at work and had no reception on his phone. Must pull myself together for Erin's sake. We quickly met Kyle and I gave him some money for his lunch and I felt terrible leaving him because he was worried now too!!

We arrived at the hospital and went straight to the Children's Hospital where they were waiting for us. Nurses came first to take all Erin's details - name, address, height, weight, GP, blood pressure, which was very high. Magic cream was put on the backs of her hands so they could insert canulas later and a urine sample was taken. Then the steady stream of doctors and junior doctors started to appear, each one agreeing that there was something very large in Erin's tummy. Erin and I both had scarlet faces, we were both sweating and panicking, it was awful. I couldn't get a reception on my phone and no-one knew where we were, I felt so alone and so very scared and it was so difficult trying to stay strong, I couldn't understand what was going on, Erin only had a cold?! She is so fit and healthy!

It was now 3.00pm and canulas were inserted and bloods taken and we were told we would have to stay in overnight, more tears, but Erin was reassured that I could stay with her. I knew it was time to go outside and try to get a reception on my phone; Erin agreed to let me go. I managed to get Scott and my mum. Mum said she would pick Scott up from work and they would get to the hospital as soon as they could. I was so pleased I'd managed to get them. I knew everything would be ok once Scott, my rock, got there.

We were taken to our room on the ward, which, if it wasn't in a hospital would have been very nice. An ultrasound scan and a chest x-ray were being organised. Within half an hour the nurses arrived to take Erin for her scan, but Scott wasn't here yet! They told me not to worry and said they would show him where to go as soon as he arrived. Five minutes later Scott and mum arrived, but wait a minute, Scott's crying! He can't cry he's my rock....... we just hugged.

The chest x-ray was clear but the ultrasound scan didn't really reveal anything. They'd though something was attached to Erin's kidney, but it wasn't, all it showed was that there was something large in her tummy but, what and where it was attached, they didn't know! We would now have to wait until tomorrow for an MRI scan.

A steady stream of family visited us over the course of the evening, with lots of tears and hugs. The ward staff were wonderful and were in and out constantly with arts and crafts for Erin, to keep herself occupied, and competitions for her to enter. She had a request played on Radio Lollipop and she won the Easter Card making competition! Scott and Kyle staying until 10.00pm and Erin fell asleep quite quickly. She was on an antibiotic drip and I think all the stress of the day had finally caught up on her. I felt so alone, something I don't like at any time at all! Scott, Kyle and I were able to text each other for a while but of course we did have to try and get some sleep. It was a long, lonely night with so many bad thoughts going through my mind.

Kyle, who is 15 and has exams looming, still had school to go to so Scott dropped him at school and came straight over to the hospital. It was about lunchtime before Erin had her MRI scan. Quite scary for her really, although I was allowed to stay in the room with her. The machine is so very loud and noisy and Erin was allowed to listen to a cd of her choice, she choose K T Tunstall. The scan took about 30 minutes. We now had to wait a couple of hours for the results. So far everything had been very open and up front. All the hospital staff felt that with Erin being 10 she really was old enough to be included in all conversations about her.

When the consultant came to tell us the results of the MRI scan she asked Scott and I to accompany her to the family room to have a chat with her and she told Erin we would be back soon. I knew it must be bad if she didn't want Erin to hear yet, I will never be able to explain the fear that had just taken over my body. It almost felt like I was floating to the family room, like my mind wasn't part of my body anymore, my head was thumping and I could hear voices in my head telling me this was bad. We all sat down, Scott, myself, the consultant, her registrar and the charge nurse. They began to tell us that Erin had a large tumour in her tummy approximately 14cm x 11cm x 11cm, by this point we were both hysterical, my baby, she's only 10, she's fit and healthy and hasn't been ill, HOW CAN THIS BE!!?? How can something so large be inside someone so small, is it benign, can it be treated, will she get better, will she die? Of course at this point they really couldn't answer any of our questions other than to tell us she had a large tumour and before they could tell us any more they would have to do a biopsy. To make matters even worse treatment like this is not done in out hospital and it would have to be done in Edinburgh Sick Kids, a hospital 1 ½ hours away from where we live. My mind had now gone into overdrive, what would we tell her, what if we lose her, what about her hair, what about Kyle when we were in Edinburgh!?!? Our whole world had been completely turned upside down, one minute we were a very fit and healthy family, who eat a healthy diet and take plenty of exercise who were all very excited about my sister's up and coming wedding, now everything had been shattered, I felt like my future had been taken from me. I know no-one knows what the future holds but usually it's just a natural thing to make plans for the future but now I was just so scared to even think about what tomorrow might bring.

Good Friday and we had our first visit through to Edinburgh where we spoke to the consultant and the surgeon. They both made us feel very at ease and told us not to worry. They were very good with Erin and only told us what they could; if we asked any questions they couldn't answer they did not speculate at all and just told us to wait. Although it was a holiday weekend they agreed to do the biopsy on Easter Monday and asked us to come back with Erin on Easter Day. I felt so bad leaving Kyle, but he understood and is such a wonderful son and brother. My mum and dad stay in the same street as us so Kyle stayed with them.

In Edinburgh the ward we were in was quiet so Scott and I were both able to stay by Erin's bedside. She was taken early on Monday morning, we were able to stay with Erin until she had fallen asleep, I hated seeing her falling asleep, it was so upsetting let her go. She was away for about 2 hours. She didn't take long to recover and only had a couple of incisions where the scopes had been. We had to stay in one more night, just to make sure she was eating and drinking properly again and were told it would be at least a week before we got the results.

Three days later we got a letter from the surgeon asking us to attend hospital in Edinburgh with Erin for surgery on 7th April. This was very confusing because we didn't even know yet what the tumour was!! We decided to phone and were actually able to speak to the surgeon himself. He told me that he had been told verbally that everything was benign and he was going to remove the tumour on 8th April, he also told us that he doesn't normally tell parents over the phone, but because he was on holiday the next week he had to arrange his diary for the following week and this was why we had received the letter. We were so pleased but not in the way we expected. Yes, it was wonderful news that the tumour was benign but we didn't feel elated the way we expected to and I was STILL crying. I think that over the past week Scott and I had both running on overdrive and now we had the news we hoped for the relief had taken over and we just felt completely shattered. We also knew that Erin still had to undergo major surgery. But now we had a wedding to get ready for. We all had an absolutely wonderful day, originally planned as quite a low budget wedding; a few extras were added in for Erin's sake and for the sake of the whole family who had just been through Hell for the past 2 weeks.

All went very well with the operation. We were in only Edinburgh for 5 days. The operation took 5 terrifying hours, longer than had been expected. It had been hoped to remove the tumour by keyhole surgery and then take the tumour out through an incision below the bikini line but this proved impossible as the tumour was actually larger than the scans had shown, resulting in Erin having to have open surgery. She was in High Dependency overnight, which was very traumatic and something I really didn't want to experience in my life. Not only was it heart wrenching seeing my beautiful little daughter lying there hooked up to heart monitors, automatic blood pressure gauges, morphine, fluids, a catheter etc. but it was also sole destroying seeing other very sick children, definitely something I unfortunately will not forget any time soon.

A small part of the tumour had to be left in as it would have been more dangerous to try and remove. Erin's right kidney wasn't working properly either because the tumour had been pressing on it. Obviously Erin will be followed up for a few years to make sure the tumour doesn't start to grow again and also to check if her kidney is working again, although we know this isn't quite as important.

The tumour Erin had is known as a Ganglioneuroma and we were told is a very rare type of tumour that, although we will never know for definite, Erin has probably had since birth and has just been gradually growing inside her. We were very lucky to have found this now, before it got any larger.

This has, without a doubt, been the most frightening and life changing experience I have had in my life time. Erin is doing really well and has been given the ok to start back at her ballet, jazz, tap, Scottish, swimming and running, which she is very, very pleased about as she finds it very difficult to rest!! Her scars, although big, are very neat and are healing very well and I rub oil into them daily. I just wish I could recover from all of this as quickly. My outlook on life has completely changed. I now know what's important in life and the petty things that don't matter. I still feel very sad and probably a bit depressed, which I feel selfish about, simply because Erin is doing so well and I know it could have been a lot worse, but that still doesn't change the fact that the possibilities of my daughter having cancer were very real and the thoughts I had will take a long time to clear from my mind. I feel scared to plan things for the future at the moment but am sure this will pass through time. It is also very true that you never know how you will feel or just what terrible thoughts go through your mind until you've been in this situation and it's something I would wish on no-one. One of the hardest things about the whole ordeal would you believe, was how nice people were, there were times when I felt that if another person gave me a hug, I would burst. I would just manage to compose myself and then another phone call or knock at the door, or card through the door, or gift for Erin and I would be in floods of tears again. You definitely find out who your friends are at a time like this, it's quite heart warming just how many people stand by you, even people you didn't think would. Even Kyle's friends (15 year old boys) turned up with gifts for Erin.

Anyway I hope I haven't made this too long I just wanted to share my experience and show that even when a situation seems completely hopeless try hard not to give up hope completely, although that's not easy.

I'm sure that through time I will learn to relax a bit again and try to be more positive about the future, but at the moment it's hard. I almost feel like the old me has gone and a new person is here now but hopefully the old me will shine through again.

Thanks for reading and to all of you out there who supported me through my nightmare.

©lel1969

Summary: No words...