This is the story of Cara Lou Smith …A very special baby …A special toddler and a very special daughter born 1st May 2002.

Hi, my name is Gaynor mummy to Cara Lou. When Cara Lou was born I noticed that she had several light brown marks on her body, the largest one being across her back , at the time I assumed that they were “birthmarks”. I pointed this out to My G.P who referred us to a specialist at the Q.M.C just to be on the safe side , and at the age of 6 months I took Cara along. Looking back  I didn’t feel at all worried.

Cara was a healthy 6 month old just like the other babies at the health centre. My thoughts were assured after seeing the specialist, as he couldn’t see any thing wrong and another appointment was booked for a checkup at aged 2. My mind was at  ease.

Cara remained a healthy baby over the coming months , and like any other mum I was eager to jot down her first crawl, first tooth and of cause her first steps. At 18 months Cara still wasn’t walking but people kept on re assuring me that this was quite normal and that she was just lazy. I noticed at this time that her left eye had started to sightly bulge out of its socket, thankfully my astute G.P got us an emergency M.R.I scan.

Now I was worried and my worst nightmare was confirmed by Mr Gregson surgeon of optomology at the Q.M.C.

Cara had a brain tumor . I had begged Mr Gregson to give me the news of the scan over the phone as soon as he had the results as I couldn’t wait. The words “Brain Tumor” rang in my head like an alarm and all I could do was put the phone down, I was literally sick. That day will stay with me for the rest of my life …

Cara was diagnosed with a condition called Neurofibromatosis, this causes benign tumors (fibromas) to form on nerve endings. Another symptom is multiple â??Café au laitâ? marks (birthmarks) on the skin.

Cara has this incurable genetic disease of the brain and was diagnosed with a brain tumor wrapped around her optic nerve pathway it is the same type of tumour that Liberty has, an Optic chiasm Glioma. After trying to get my head around all of this I asked the question when was the tumor going to be removed, i got the same answer as Carl & Dawn were to get when Libby was diagnosed, I was told that this could never happen because if looked at under a microscope it would be like looking at sugar and salt ,you wouldnâ??t be able to tell nerves from tumor and the only option would be to treat it with chemotherapy.

We were referred to  Professor David Walker Oncologist at the Q.M.C. who started Cara on her first course of Chemotherapy  she was 22 months old.

We didnâ??t know at this point how Caraâ??s eyesight  would be affected, and we really didnâ??t know or couldnâ??t anticipate what the next 5 years had in store.

I just took everything day by dayâ?¦. And I  use  â?? I â?? in that last sentence  because Cara just took everything in her stride  and  showed  remarkable strength and resilience . She kept me strong by being so brave , I couldnâ??t show her my tears it wasnâ??t fair because I hardly ever saw hers! 

Cara is nearly 7 years  old now, she is blind in her left eye and  only has tunnel vision in her  right. She has endured further courseâ??s of chemotherapy over the years and several long stays in hospital, it was on our latest 12 month course of chemotherapy that we first met Carl, Dawn and their three beautiful daughters. They instantly formed a bond with myself and Cara mainly due to our daughters both having the same condition. The fact that Cara had already endured 18 months of Chemo & was half way through a second cause meant that we were old hats at this and as such we could offer them a lot of support. Also Cara was only 5 months older than Jemma, Libby’s big sister, and they soon became good friends often playing together on the ward during Libby’s early days of treatment, with Destiny whizzing behind them in her baby walker. When they were altogether they really did bring allot of laughter and smiles to the hospital ward e39.

Cara is a well known presence on ward  E39  and E38 daycare at the Q.M.C , not only by the brilliant doctors and nurses  that have treated her , but also  by  other remarkable children and their  families that we have met along our journey (you amazing people who Iâ??d like to call Friends, you know who you are.. Thank you). 

Cara is much more aware of her condition now but still battles on and we donâ??t know what the future holds,  but when she rarely asks  â?? Why me mummy â?? ? I can only swallow my tears and  tell her how special she is and how great  it is that she can help other little boys and girls . She doesnâ??t deserve this none of them do and Iâ??m the one that says its not fair â?¦, she never does, she just carries on, Cara just wants to fit in like every other little girl.

This will be an ongoing ordeal for the rest of her life .. Iâ??m just so proud to call her my daughter  shes beautiful , funny, cheeky but very charming!!!  A mum at the school gates  said just the other day â??Everyone needs a Cara in their lives, she brightens my dayâ?â?¦â?¦ well she does mine EVERYDAY and I wouldnâ??t swap her for the world .

Recently i bumped into Carl and Dawn whilst attending an appointment with Cara at the Queens Medical Centre. Carl was very excited and couldn’t wait to tell me about the Liberty Rose Trust, a charity that Carl & Dawn were building, within minutes the excitement was rubbing off on me. That day things changed for myself and Cara as we became apart of something great.

The reason we were there was that Cara had been experiencing symptoms again, i was very nervous as i knew what this would mean but seeing Carl & Dawn helped more than they will ever know. An MRI scan was organised for Cara so that Professor David Walker could see what was going on.

The worst thing about scans is the waiting for the results which can take a couple of weeks, its an agonising time. We eventually got the appointment through to see David. You try and prepare yourself the best you can but its never enough.

Cara and I walked into his office, she sat down and bold as brass turned to Professor Walker and said ” so David what do think is going on “, shes certainly one of the most forward 7 year old girls Ive ever met as i’m sure all those have met her will testify to. The news wasn’t good. There was a build up of fluid around Cara’s brain which if left un-treated would certainly cause her to lose the rest of her sight. This wasn’t the end of the bad news as he went on to say that her tumour had also started to grow again and he was very concerned that her glioma had manifested from a grade 1 cancer into a grade 2 cancer. My heart sank and i couldn’t hold back the tears.

So Professor walker explained that Cara was going to have to have brain surgery, firstly so that a shunt could be fitted to drain off the excess fluid, whilst this was happening the neurosurgeon would send a probe down to the tumour so that they could obtain a fresh biopsy of Caras tumour. Usually a biopsy on a tumour situated around the optical chiasm would involve a very complicated 7 hour operation like Liberty had endured, but because Cara’s tumour had already caused extensive damage to her optical pathways and had cost her the sight in one eye it would cause no further damage guiding a probe directly into the tumour on the side which was already irreparable, this was a small mercy that i was very grateful of, the thought of Cara having to have her hair shaved would have just been to much, i know it sounds silly after all she has been through in her short life but sometimes its the little details that push you over the edge.

The support of everyone at the Liberty Rose Trust made a huge difference not just to me but to Cara as well. She wasn’t phased at all about having to have surgery in fact she was excited at being able to present the hospital ward with a new LCD TV and trolley donated by Cara on behalf of the Liberty Rose Trust.

Carl, Dawn and the twins came along with us that day as Liberty was due her chemotherapy and the atmosphere was very relaxed, which helped as inside i was a nervous wreck. You never really get over these emotions no matter how much treatment your child goes through, its just one of them things but its the strength you see displayed by your child that really gets you through it all, and Cara is one amazing brave little girl.

The operation went smoothly and the work done by the neurosurgeon was fantastic, you wouldn’t even know he’d been there. The shunt went to work straight away and after a few days in the hospital Cara was well enough to return home.

Now we have to wait for the results of the biopsy before her Professor decides the best way to tackle the tumour for the third time in 5 years, half of that 5 years has already been spent on chemotherapy and at times i must admit life seems very unfair. But Cara wakes each morning with a huge smile and an enthusiasm for life that is just so infectious.

 

Three weeks ago Cara’s tumour started to progress again, the decision was made by the medical team to place Cara on a new very toxic combination of chemo drugs, a combination that has previously been used to treat the most aggressive forms of lung and bowel cancer in adults. Our prayers go out to both Gaynor and Cara Louise as there battle with cancer continues.

Thank you for taking the time to read my story and for visiting the Liberty Rose Trust, because together we will make a difference !