Kiah

Kiah's Dream


Kiah came through a scary nightmare and the family want to develop Kiah's Dream to raise funds to help other parents who find themselves in the same situation.

You can support Kiah's Dream via Justgiving HERE.
Kiah's Story

The News No Parent Ever Wants to Hear...


"25th August 2011 - everyone was fast asleep and I was suddenly woken by a dreadful choking sound, I automatically thought it was my two year old son, Ashdon as he had breathing problems when he was a baby. I then realised that the sound was coming from my eight year old daughter, Kiah.

I ran to her room and turned on her light to see the most terrifying sight, Kiah's eyes were black, teeth clenched, her skin was grey and lips were blue, her little body was rigid and she was flailing around her bed. I threw her onto her side and started patting her back because I thought she was choking, I then realised she was having some kind of seizure. I screamed for my partner James to come and help, and he called an ambulance.

                                                           

When the fit finally ended and Kiah began to recover, she was unable to walk or talk though by the time the ambulance crew arrived, she was sat up chatting. We arrived at the Leeds General Infirmary and it was thought that Kiah had experienced a one off fit and may never have one again, but they gave us an appointment for a CT scan to be on the safe side.

An appointment came through for a CT scan on Friday 2nd September 2011 - the day before we were going on holiday. Kiah was very brave and had her scan, we were quite light-hearted and jolly at the time. We headed back to the CT unit to wait for the results and very soon, a doctor came and asked if I would go into the office. My heart sank, the meeting was then a blur but I do remember seeing a scan image behind him with a shadow on it, and the doctor saying Kiah has a brain tumour.

I began to hyperventilate and thought I was going to pass out when I turned to see Kiah looking through the window mouthing the words "what is wrong with me?" I knew I had to be strong for my girl. My fears for my child were unbearable, I was panic struck and at the time simply felt overwhelmed with fear and unable to cope. The team calmed me down and when Kiah asked if she was really poorly, I couldn't answer her as I was still so shocked. Soon after we were taken for an MRI scan, this time we were terrified, and fearful of what the results would reveal. All I could do at this point was pray that the MRI would give us some better news.

After the scan we sat in a room and waited. Eventually the doctor came in and sat down, I felt ill, like my heart could stop at any moment, if only I could take her place. The doctor confirmed Kiah did have a tumour, he also said "I think it is benign". I interrupted and asked if Kiah was going to die, "no" he said. We were still worried, but a little relieved to know the tumour was not malignant. We headed back to the ward and my dad was waiting for us. I then realised we were supposed to be going to France the following day for three weeks, including a trip to Disneyland Paris. The doctors said that we should not go. I was devastated - we were all so looking forward to going on holiday, it was the one thing that had kept us all going through a very worrying time.

I begged the doctors to re-think and they agreed to check with the surgeon. We headed home to be surrounded by half packed suitcases and holiday things. After a sleepless night, I rang the ward to find out if we could go on holiday - at 1pm the team had the news that we were able to go, but they were worried about Kiah and said that it was to be my final decision. After a family discussion, we all agreed to get in the car and go - this was a once in a lifetime trip and after all we had gone through, and the uncertainty of what lay ahead, we needed some time out.

Unfortunately, Kiah was not well and her fits continued through the holiday, each one leaving her exhausted. We decided to go to Disneyland and then cut the holiday short and returned home.

I felt isolated during this time and decided to look on the internet to see if I could find out more information, which, with hindsight, was not the best thing to do. My GP gave me the tumour type and said it was low grade and that the team at the LGI were not overly worried. That did not stop me from being out of my mind with worry.

We saw Mr Tyagi, Kiah's neurosurgeon who said that the next MRI would determine whether or not the tumour was operable. The possible problem would be if the tumour was too close to a vital area of Kiah's brain, surgery could cause serious damage, leaving Kiah with similar disabilities to a stroke.

Kiah had her second MRI on October 3rd and we got the results on October 26th when Mr Tyagi rang me to say that he had good news and it was OK to operate. We just had to wait for a date for the operation to take place. Kiah was still having fits, she had 15 between August and October, and changes in her medication didn't seem to be working. She was admitted to hospital again in November as a result of a violent seizure.

In early December Mr Tyagi's secretary called to say "Kiah is pencilled in for surgery on 13th December" at which point I panicked because it was so soon!

I felt a mixture of emotions - one minute I was happy to think that the tumour could be removed, then the next I was terrified as my little girl was to have neurosurgery. Out of the blue on 6th December I had a call from Ward 75 to say they had a cancellation and could we come in today for Kiah's op on the 7th. We agreed to take the slot and headed down to Leeds. Kiah was very scared and it was so difficult not to be able to reassure her and make everything all right.

The operation was expected to take three hours, after five hours she arrived back on the ward looking battle weary, but she was back! It took about four days before Kiah was moving about the ward, but was getting stronger with every day. When we left hospital on 12th December 2011, Kiah was looking much brighter, she was exhausted but we did manage to have the best Christmas ever!

We saw Dr Livingston on 5th January and he was delighted with Kiah's progress. They think all the tumour was removed and a follow up scan at a later date will confirm if Kiah will need further surgery.

We are so happy that Kiah has come through this scary nightmare and want to develop Kiah's Dream to raise funds to help other parents who find themselves in the same situation as we did. I remember feeling isolated, scared and bewildered particularly in the early days before a confirmed diagnosis was made and I want to help others faced with a similar situation."

Written by Kim Sewards - Kiah's Mum




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