Click here for Abi's Just Giving
The next day all the panic was over â?? Abi had been diagnosed with dyspraxia â?? a common movement and co-ordination disorder. Thank god for that! We now set about trying to find out all about the condition, reprimanding ourselves for not realising it sooner and getting in touch with other kids and families. I think that if Abiâ??s problems had come on suddenly we would have been more vocal about this misdiagnosis, but things started so slowly â?? even the part about struggling in school seemed to fit. We then saw a paediatrician, if Iâ??m ever angry this is the person that itâ??s directed towards. Luckily for Abi she was referred on to another paediatrician with an interest in autism (???) Still no panic though, itâ??s now August and we see the next paediatrician, who says sheâ??s a bit concerned about the dyspraxia diagnosis and that she thinks Abi should have an MRI scan. I remember going home and people saying that if they thought it was serious weâ??d be in Birmingham Childrenâ??s by now, our appointment came through for the 5th September 2007 â?? a date that will stay with me always.
We arrived really early, I told Abi that weâ??d go shopping if she did as she was asked and behaved. She was golden, we didnâ??t bother explaining about a canula as sheâ??s have had it removed once she woke up. She would be gone for 40 minutes and the results would take about a week to go to the GP, who would ring us. She was gone for an hour and a half. Steve had started a new job the day before so I was with my sister Polly, my son Tom was being looked after by my other sister Anna. Weâ??d also moved into our dream house 10 days before, and proceeded to make it uninhabitable while we did it up. I remember the nurse coming back and introducing two neurosurgeons, saying that Iâ??d got to go with them for a â??chatâ?? â?? not a good sign I thought. I thought of the hospice, of all those kids looking happy and well â?? Iâ??ve so many pictures of Abi looking like that.
They calmly explained that our beautiful, funny, bossy and highly intelligent 6 year old daughter had a mass in her head, about 5cm across, at the back. That it needed removing and that they would operate in the morning. I remember saying that they couldnâ??t because we were going shopping,  that sheâ??d been really good and weâ??d done as they asked. They said we were going to Ward 10 and wouldnâ??t leave the hospital until after her surgery. I remember a loud noise in my head and wanting to scoop her up in my arms and walk out. Then I did something that scared me even more, I read her notes that were sitting at the end of the bed. â??Mum is aware of masses in her daughters headâ??. No I wasnâ??t! I was aware of a mass and if its cancer then masses means REALLY bad news. I thought I would just collapse there and then, but Abi was sitting there and I knew that from then on we needed to make sure she never felt the fear I was feeling at that point. The canula turned out to be the most terrifying thing Abi had ever experienced â?? even now she struggles with them.
We were taken to Ward 10, at about 9.30pm a smiling face appeared around the curtain â?? Abiâ??s oncology consultant, Dr Andrew Peet. A more professional, caring and considerate man you will never find. He took us into the office (later to become known as the room of doom) and explained what was going on, that he would take over once the surgeons had done their bit. I remember him talking about chemotherapy and radiotherapy â?? I didnâ??t really know what they were, I knew that chemo was harsh medicine used to kill cancer cells, and other quickly dividing cells like hair follicles. Then it hit me that she would lose her blonde hair. This was all within the space of a few hours â?? how parents do it Iâ??ll never know. It took all my strength just to sit up, eventually we went to bed. The nurses were great and let us both stay with Abi for that first night. I remember stroking her hair as she slept and trying to think about how to explain all this to her.
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The surgery was postponed for a few days once Abi had been seen after the anaesthetic â?? the effects of the pressure inside her brain were not as bad as previously thought. They did scan after scan and practised the operation using a 3D model (with thanks to Poppy Fields Charity for the scanner) On Monday morning she wanted me to read The Brave Little Grork, a story about a grork who gets scared very easily, but thinks brave thoughts and is brave because he does things despite being scared.Â
Seeing your child have a general anaesthetic is terrifying, be it for brain surgery or removal of an ingrown toenail… seeing them fall into that unnatural sleep strikes every part of your parental body as wrong. Leaving her was awful, the same nurse, Angie, who has since become a good friend, was with her for each of the 5 GAs that week. I remember her putting her arm around me and saying they would look after her. I just wanted to dig a big hole and bury myself forever. Instead we went shopping â?? they told us not to wait in the hospital as it would seem even longer.  
When she came round she couldnâ??t control her eyes, had 7 access sites including a neck line(lines are from canulas that they could use to get blood or give medicine) was in a huge amount of pain, couldnâ??t swallow, couldnâ??t move her head or neck and was really thirsty. Because of her swallow she was only allowed to suck on a small sponge â?? she was so angry! I remember thinking that that had to be a good sign.8 days later we were home and one of the first people to visit was her friend Molly, sheâ??d also been into hospital and has been a constant source of support â?? we LOVE you Molly Stephenson!
4 weeks after the surgery Abi started her radiotherapy and chemotherapy. Abi had had a central line inserted so that she wouldnâ??t need needles for her treatment. They had explained that wherever she had cerebrospinal fluid she had tumour we felt we had no option but to sign up to a clinical trial. The HART protocol involves 5 weeks of radiotherapy, twice a day every day. Abi wasbrilliant. She suffered shocking burns and sickness but she carried on until the end. She saw a plastic surgeon t one point due to the extensive burns behind her ears and around her original wound but didnâ??t need to have any surgery in the end.
In December we went to Lapland to see Father Christmas. It was a magical day, even though Abi was only awake for about 2 hours in total. On the 21st December we were admitted to Ward 15 for chemotherapy â?? Cisplatin. Abi was hooked up to four drip pumps for about 36 hours, in this time she would become a tangle of lines and moving from one place to another was like towing a caravan. There was a little play area at the end of the ward and we met so many wonderful kids and parents there â?? most of whom weâ??re still in touch with. The teachers would come and Abi would struggle out of bed and go to make or bake something.
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Chemotherapy was a long tough process, Abi had Cisplatin, then Carboplatin when that started to cause too much damage, along with CCNU and Vincristine. We lost count of the number of blood transfusions and platelet transfusions. In September it was decided that she could have no more chemo â?? after her blood counts had taken 11 weeks to rise. She was 2 cycles short of finishing and we were terrified â?? again!
The end of treatment is a weird twilight time. You donâ??t want your child to carry on having toxic drugs pumped into their body, but you donâ??t want them to stop either. You donâ??t want to spend your days in clinic, waiting for your blood counts and prescriptions, but youâ??re not sure what to do with yourself at home. You miss your oncology friends, the other parents you spent hours and hours talking to, crying with and holding up. Life is supposed to be on the up â?? a celebratory time as itâ??s all over â?? but itâ??s not. It will never be over for us.Â
Abi is the same child, ideas take her longer to grasp, her movement is wobbly, her hair wonâ??t grow back properly, she has a squint, her short term memory is shocking, her vision and hearing have been affected, she needs growth hormone and will need medication to go through puberty, she may need help to become a mum and she may be prone to other cancers due to her treatment. But she is the same, cheeky, mischievous, loving, beautiful, funny, stubborn, artistic, generous child. She now has 2 little brothers, Tom and Ted â?? both of whom adore her. She is doing well in school, loves High School Musical and wants a horse. She has an MRI scan every 3 months and Iâ??m devastated that 2 of the children we have met with the same tumour have recently relapsed. We live in 3 month bursts, slowing down at scan time and holding our breath.Â
 If ever I feel low or hard done by I just remember those first dark days when I promised my soul in return for her. I remember the kids weâ??ve met and lost and the fact that life is not guaranteed for any of us. Your child facing cancer is not anything I would wish on anyone, but surviving it (thanks to research and the hard work and commitment of the staff at Birmingham Childrenâ??s Hospital) has made us a stronger family, a family that never goes to bed without letting each other know just how much we love each other.
Sarah – Abi’s Mum
Lisa Guilder (left) Sarah Hill (Abi's Mummy)
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