Our Precious Gabriel

Looming scan

2012-02-07T12:00:00.007Z

Scan time. It comes around fast, too fast. We go through a cycle. We bask in the glory, comfort and security of NED. We then start to feel slightly normal, we go about our day to day, and sometimes we almost forget. But then it gets closer and we (mainly I) become neurotic and scrutinise every single ache, pain, comment, walk.... you name it..... that little Gabriel does.

He dared to mention the words 'leg pain' a few weeks ago. I have yet to recover. I was reduced to tears at my desk at work, I stalked Gabriel's school for updates to see if he had complained, I sobbed down the phone to Addenbrooke's, twice. All in a days work for an AT/RT mum. Gabriel, thankfully, has not mentioned leg pain since. I ask him, daily, 'does anywhere hurt'. Mainly, he looks at me like I am insane, and either ignores me, or dismisses me with an annoyed 'no'. My heart leaps when he says that. But last Monday he said that he did hurt. I felt sick and waited, for what seemed like far too long, only for him to tell me his toe hurt and that he really needed new shoes, the same as Jake's, Tyler's and Barney's"......he got them.

So that is how you find us today. Neurotic and scared that we are now 6 months since our last clear scan, and terrified that our next scan is so close - 27 February. As ever, we are keeping very busy and the snow helped distract us at the weekend. So here are the three little creatures who are our world, Immy and Orlando on the sledge (Orlando's first snow) and Gabriel, pelting snow balls at Uncle Paul.

Please keep Gabriel in your thoughts and prayers for a clear scan.

Gabriel's Mummy

Christmas Update

2011-12-24T16:39:00.002Z

How far we have come since Christmas 2008. Sometimes it feels like it happened to another family, not us. At other times it feels like it was yesterday.

Christmas 2008, a 2 year old Gabriel was in hospital, suffering from the side effects of his chemotherapy. We had no clue as to whether or not we would make it home that Christmas and knew in our hearts we were lucky to have made it that far - we had been told to bring Christmas forward. We never dared dream or imagine that 3 years later, a happy and healthy 5 1/2 year old Gabriel, would be busy planning his extensive list of gifts for Santa, or merrily writing his Christmas cards to his friends at school, or decorating pine cones (and Aunty Toe's kitchen) with glitter as I blog. Gabriel is so excited by life it is almost as if he understands just how hard he has had to fight for it - something so many people take for granted.

That very excitement is often landing him in trouble at school which, to be honest, does annoy me a little. School have been told what he has been through, but I do think it is hard for them to associate the sick Gabriel with the child he is today. That is probably a good thing and demostrates how far he has come, but I sometimes feel too much is expected of this 5 1/2 year old boy who has spent a significant portion of his life being seriously ill.

Gabriel is such a happy child. He is eating so well and is now a normal weight for a child of his age. He no longer needs any dietary supplements and I am proud to say pretty much will eat anything we give him. School have told us that he is hugely popular with his classmates and kind to the other kids. His downfall is his concentration which he seems to lose quite easily. We don't know if this is because of personality, age or just because of what he has been through. Time will tell and to be honest, I am the luckiest person alive to have that as my concern.

So here he is, Gabriel Anthony Davies, Christmas 2011, aged 5 1/2...

Little Sister is also doing well. She has had a bit of a tough time this year adapting to being the middle child, or "Immy in the middle' as we call her (she thinks this is because her car seat is in between her two brothers). Imogen is particularly bright and savvy - a bit ruthless really, - cut out for life in 'the City', unlike Gabriel who is definitely more suited to the Arts. She seems to know that something quite remarkable has happened in her life time, but not what. I have held her close and sobbed over her little body at some particularly desperate times. She must have sensed the sheer sadness of the family into which she was born. By the time she was 5 weeks old, a time she should have been the focus of all of our attention, she was practically handed over to her grandparents as frankly, Gabriel needed us more. I try every day to make that up to her and hope it won't shape her life. She is so much fun and we just adore her. She is independent and very dominant, but come bedtime, needy and scared. I sleep with her most nights and her little hand reaches out to me several times a night. She shouts for me in her sleep. Come morning, she is back to being the independent little girl she is. She demands most of my attention these days, and she gets it. She missed out on so much. Here she is, Imogen Juliet, Christmas 2011 aged 3 1/2....

And to the most recent member of the Davies clan, baby Orlando, now 7 months old. Undoubtedly, the world's most pleasant and placid baby. Days go by without him crying. He is big and chunky and looks so healthy. He is just a delight and is adored by us all, Imogen is possibly his favourite and he laughs and giggles whenever she is near. I found her 'feeding him' a few months ago, leaning over and letting him suck her nose!

And to me... well all is well. Life is busy and hard work. I recently returned to work (3 days a week) and Orlando has joined Imogen at nursery. When I walk down the road with the three of them I just ooze with pride. I buzz inside at how lucky I am to have them, even when they are being particularly difficult. I just love being their mum. I sometimes wonder and question if I will ever look at Gabriel and not always see what we have been through, or look at him without worrying about it coming back, or if I will look at Imogen and Orlando and question if the same will one day happen to them. I wonder if I will ever be like other mums of three young children, just going about their day to day business, without counting my blessings pretty much every second of the day and feeling tremendous guilt if when I tell them off. Who knows. I am the first one to admit that I am forever changed since 2008.

Daddy is doing well. Working hard and enjoying normality. We recently joined the local health club and spend lots of time there as a family. Gabriel is taking tennis lessons, Imogen sticks to me like glue and Daddy and I take it in turns to have exercise time.

All up, life is good. We are happy and forever know how blessed and lucky we are.

So all it leaves me to do is to wish you all a very Merry Christmas and a Happy New Year. To those AT/RT families currently battling, I so sincerely hope that Gabriel's journey gives you hope.

The Davies 5

Dietician check-up

2011-11-08T10:24:00.004Z

Hi All,

It's been a while since I've posted on here. Mummy became the family correspondent, sharing Gabriels progress and updates with you.

We've lost internet access at home of late due to technical difficulties with our provider so I thought I'd take the initiative whilst at work to share a brief status report. (Can you tell I'm in work mode!!)

I'm pleased to say that Gabe is continuing to do well. He's such a joy and pleasure to be around, always thinking of others, kind and compassionate. Recently, his teacher told us that he was a lovely little boy, popular with the class and was doing well in school. He scored 99 out of 117 in his age group assessment! Good going when the average is 78 and not overlooking the fact he's undergone major brain surgery! Mummy and I remember well the post surgery briefing in which we were told that any child who undergoes brain surgery will never fulfil his true potential. At the time we just wanted him back, regardless of the outcome.

So, tomorrow Gabriel is off to 'Amos's House' for a checkup with the dietician. He's still slight, but he does eat. Actually, he's a brilliant eater and really enjoys his food and it warms our hearts to see him tucking in again. Luckily for us, Mummy's an excellent cook and takes great pleasure in preparing meals for the kids. Although he's still slight, I don't think the'll be any reason for concern by the dietician and I'm looking forward to hearing how much he's progressed on their charts.

So for now, I suppose that's about it. After all, I am at work!!

Once we get the home broadband issue sorted, I'm sure Mummy will post a update on the appointment itself and maybe some more of her thoughts and observations.

Thank you all for your continued support and prayers. You have all played a major role in getting us to where we are today. I continue to pray for Gabriels well being and ask that he grows up to live a long, happy and fulfilling life with us, his family.

Dylan - Gabriels Daddy.

Gold Standard Results - No Evidence of Disease!

2011-08-22T20:55:00.005+01:00

Whilst trying not to think too much about today's Gold Standard Meeting, and keeping myself as busy as possible to stop my mind straying, I have no control when sleep takes over. Last night, my mind was off on a frolic of its own. My dreams focused on today's meeting. It was a restless night and I relished Orlando's company.

We spent the day at Knebworth House on the 'dinosaur trail'. I felt relatively at ease in the company of my good friend Rachel, and her kids. But by 3.30 ish pm, I knew that the Gold Standard Meeting would probably be over and I started to subconsciously check my phone every few minutes. Then, it rang. It was Amos. The scan was CLEAR, CLEAR, CLEAR!!!

I ran and grabbed a rather bewildered Gabriel who was busy admiring a T-Rex and hugged him telling him 'Amos loved his photos'.

So our miracle goes on. We are delighted, relieved, and very tired. It is hard work always having to push away the frightening thoughts.

Gabriel nearly wandered in front of a car today, a terrifying moment when my eye was off the ball handling a Little Sister tantrum (a frequent occurrence). I told him that he was saved by his Guardian Angel. He looked me in the eye, and said, 'No Mummy, I am the Guardian Angel'.

Whilst those of you who know him (especially Mrs Brown (his Foundation school teacher) and Nonna and Grumpsy (whose curtains Gabriel recently pulled down when swinging off them)) will be able to tell you that our Gabriel is no angel. His name, however, does mean 'The Messenger'. I believe that our Gabriel's message is to remind us all to never give up hope.

Gabriel's Mummy

Provisional results are in ....

2011-08-11T21:11:00.003+01:00

No evidence of disease! NED, the three simple letters that keep our world spinning!

The gold standard meeting (when the oncologists, brain surgeons and radiographers meet to formally scrutinise the scans together) will not take place until 22 August, but we at least have the provisional report of NED.

Gabriel has been looking fabulous, truly fabulous. His sicky feeling has passed and we have literally no concerns about his health. He has been full of mischief too which includes (i) picking Grumpsy's green tomatoes (with Little Sister as his partner in crime), and worse still (ii) pulling down the curtain rail in Nonna and Grumpsy's hall whilst trying to swing off it - he told me he was trying to be a cowboy. Surprisingly, Grumpsy was more cross about the tomatoes than the curtain rail, he seemed secretly amused by that one.

So all up, we are a very happy Davies 5 household tonight. I will update with the formal results after the gold standard meeting which we hope and pray will not change.

Thank you to everyone for your thoughts and prayers, and for caring about our boy.

Gabriel's mummy

Well done Gabriel

2011-07-18T21:25:00.005+01:00

Three years ago, Gabriel was a very sick two year old, days away from being diagnosed with a brain tumour. Horrendous, horrendous days.

Today, life could not be more different. Gabriel is well, he is fantastic and tomorrow is his last day of his first year at school. We are so proud of him. He has made some great friendships and despite what he has been through in his short life, he has grasped every single opportunity thrown at him with enthusiasm and joy. That said, he is not that interested in learning to read - he is quite cocky and claims he already can. When I asked him to read me a book, he laughed and said, I know all the words I need ' M U M - mum, D A D, dad, and G O D, God'. All in good time.

Last week, baby Orlando and I arrived at 'after school club' at Fordfield House to collect Gabe and Little Sister. As I was parking, I noticed a young boy running as fast as he could across the paddock, chasing a tennis ball. A care free, happy child with the biggest smile on his face. I was glued to the spot. That boy was Gabriel, our precious boy. He ran right past the cherry tree that was planted by nursery to honour him. That tree was to be his memorial tree. He does not pay any attention to it, he does not know its significance.

As I watched, I realised that I was crying. I cried for a number of reasons. The immense relief that Gabriel has so far defied the odds. The joy at watching my eldest son, so full of life and joy, whilst holding my baby son. But also I cried because of a sadness that I have learnt to understand and accept will never really leave me. Don't get me wrong, some days I almost forget, but then something happens that brings the reality of the fear that always hovers over me flooding back.

The last few weeks, Gabriel has complained of feeling a bit 'sicky'. Amos has checked him over and is happy with him, but I still am on edge. Scan time is looming and poor Gabe is under close scrutiny by his paranoid mum. But between now and the dreaded scan we have much to look forward to, including a family holiday in Cornwall.

I am so incredibly proud of him, of Imogen and also baby Orlando, who fits so well into our family. Orlando's car seat sits between Gabriel and Imogen's. They often all fall asleep when in the car, always holding hands in a chain. It is beautiful to see. I just love being their mum.

Gabriel's next scan is Thursday, August 11th. Please keep him in your thoughts and prayers for a clear scan. I will update with the results.

We are the Davies 5!

2011-05-21T10:58:00.009+01:00

We are thrilled to welcome to our family our new son, Orlando Jude Davies, born 18th May, weighing in at 7lb 4 oz. Orlando Jude is named after his great, great Grandfather, Orlando Malpeli, and after Saint Jude, the patron Saint of desperate and seemingly hopeless cases.

I used to annoint Gabriel with the Blessed oil of St Jude each and every night of his treatment. Gabriel still has a pot which he keeps hidden in his 'secret drawer' in his bedroom and every now and then asks me to annoint him.

Gabriel continues to go from strength to strengh and recently celebrated his 5th birthday.

We are thrilled and know how blessed we are.

Deo Gratias

Gabriel, Imogen AND Orlando's mummy, Christine

It's official - NED

2011-02-16T14:14:00.003Z

Gabriel's MRI was clear. The gold standard meeting has ruled and the scan was, in the word's of Helen Fernandez, the wonderful surgeon who operated on Gabriel's brain and, later his spine, 'perfect'.

Let me tell you a little bit about this incredible woman.

It was in the early days of diagnosis that she came into our lives. She was not the allocated brain surgeon. Mr Garnett was. But the morning of Gabriel's surgery, Mr Garnett came to see us and explained that he had been operating over night and whilst he was functioning at 99%, an operation of the intensity of Gabriel's required 100%. He told us that Gabriel could not wait for surgery any longer - the operation had to take place that day. For that reason, he was handing Gabriel over to his colleague, Helen Fernandez.

I was, quite simply, horrified. I had never met this person and very shortly she would be operating on my baby's brain. I remember the word's 'but is she any good' bellowing out and Mr Garnett nodded, and replied that she was actually his boss. I now cringe at the thought that I asked that question.

I remember Nonna pacing up and down and nodding to herself saying 'this is good, little hands, little hands, women have little hands, little careful hands'. She said this over and over. Almost like she was in a trance.

And then they took him. The 9 hour operation that we had been told to expect ended up being more like four, the shunt we were told he would have, did not appear, and the tumour that was killing our child was removed. All of it, by the woman we had never even clapped eyes on.

After surgery, and before we were aware of the horrendous diagnosis of AT/RT, Helen came out of surgery. My first impression was that she was very, very petite. She was very relaxed and told us confidently 'I got it all out'. I wanted to grab her and spin her round. And until Monday, when I met her again, I am not really sure what I did. My memory is blank. I just remember focusing on this tiny two year old boy who was trying to climb out of bed having just had major brain surgery.

Two weeks after the brain surgery, when the diagnosis was in and the palliative care plan in place, and when all hope had left us and despair had taken hold, we took Gabriel back to Addenbrooke's and once again, handed him over to Helen Fernandez. Gabriel's quality of life was unbearable as the tumour on his spine was causing him horrendous pain. 'White pain' they called it - the worst sort. She told us that she was due to go on holiday the next day and could not go leaving Gabriel in such pain. She cleared her list and once again took Gabriel into theatre for an operation we were told would be about 4 hours, but ended up being far, far longer. After the operation, she told us that when she had opened up his spine, spinal fluid had shot out and hit the ceiling, such was the pressure caused by the tumour. She could not get it all out, but she got out most of it. Although we were told that this operation would not save his life, it had at least improved his quality of life, albeit we were told it was going to be a very, very short one

We then took him home and waited. But he did not die, the miracle started to play out before our eyes and he got stronger and from there his recovery started, he was returned to us by this wonderful woman. Totally unscathed, no surgery damage.

From time to time when Gabriel was an in-patient, I saw her carrying shopping bags to her car, an unassuming woman ready to return to her family after a days work. To a passer by she could have been anyone, a patient, someone visiting a patient, a hospital kitchen worker, a midwife, a doctor .... just anyone going about her day and then returning home to her three children. Not to us though. This lady had given us our child back and together with the oncology team, a chance of fighting for his life.

I often have wondered if she ever thought about the little boy who had no hope, who out of kindness she operated on that second time. I never spoke to her again, our paths simply did not cross, until two days ago. There she was, sitting, waiting to see the little boy whose life she had helped save. What a moment.

I warned Gabe that he had to be good as he was about to meet a very special lady. He ignored this warning and instead went all daft. Her first words, 'Gabriel, the little miracle'. Daddy and I told her how well he is doing and thanked her for what she has done for us. I could have cried and hugged her, but Daddy and I are very strict about what Gabriel sees and does not see. We are massive believers in placebo and do not want him to hear or know too much. All in good time.

Helen then described the moment we met 2 and a half years earlier and filled in the missing blanks. She said how she left theatre with a view to going to see Gabriel in recovery and the nurses warned her that the mother (yes me) was in a bit of a mess. It transpires that Gabe was just fine, I was not though and was in a state of collapse on the floor and had to be helped to a chair and given cold water. Ha! Not quite the cool calm and collected image I like to picture.

I told Helen how I never particularly cope well with MRI scans and tend to lose myself a bit but that this time, I think I handled it better. I then caught Amos looking at me - he burst out laughing, as did I, both knowing it was a total lie. One day I might handle it all a bit better, but lets just say I am still a little raw.

We were told that Gabriel's next scan is in six months, and get this, we don't need to be seen in clinic until that scan. They want us to just get on and live our life and contact them with news of the safe arrival of our new baby.

And so, that is where I shall leave you. The Davies 5 to be will carry on trying to 'move on' and let Gabriel and Little Sister continue to blossom. All going well, next time you hear from me will be so I can introduce our new addition, hopefully around baby's due date, May 23rd.

So for now, goodbye and as ever, thank you for caring, praying and looking out for our little man.

Gabriel's Mummy

Provisional results are in........

2011-02-08T13:26:00.003Z

Amos just called.

I was sitting at my desk at work, eating my lunch, chatting to my friend, and then the phone rang - and with it, my heart stopped.

Immediately I heard his calm voice.

"It's clear"

NED NED NED !!!!!!!!!!!!!!!!!!!!!

It is a provisional result but Amos is happy that it is clear. The gold standard meeting is on Monday when all of the Team go over his scan with a fine tooth comb, and Gabe will also be seen in clinic so I will update as to his progress further after Monday. But for now, we have heard the all important words that keep our world turning.

Thank you for thinking about him, praying for him, sending him your positive thoughts and energy. Our miracle goes on.

Gabriel's mummy

MRI

2011-02-07T18:19:00.002Z

Well, the scan has been done and the wait is now on for the results.

Gabe was great and he and Little Sister treated the trip to Addenbrooke's as if it was a treat. They love it. Of course, Gabe got very upset at 'stingy' point when the line had to be put in his arm for his IV sedation - but the Bravery Box served its purpose once again, only this time, Gabe had to practically wrestle Little Sister to the floor to get a look in the box himself. 'My brave too' she kept saying - and she is right, she is. This has been her life, her brother's health dominating her parents every waking moment.

So, please, send all your prayers and positive energy in his direction. We need our miracle to go on. And how to I feel? Like my life is a glass ball that the doctors are playing catch with - and they have butter and oil all over their hands. I am scared, but focusing on taking a lead from Gabe and just how well he is (by the way, he has been in trouble at school over the last week - TWICE). So he must be feeling good.

Will post as soon as the news is in. For the rest of the week, every time my phone rings, my heart will stop.

Gabe's Mummy

Update from the Davies 4

2010-12-19T21:30:00.003Z

Well, I said in my last blog, back in September, to take silence from me as a sign that all is well in the world of the Davies 4. And that is where we are today - Gabriel is just fantastic, he is going from strength to strength. He has settled beautifully into school and recently played the part of a 'soldier' in his class Christmas play. I did wonder why he was not cast as the Angel Gabriel, but the answer became apparent very quickly when the angelic boy chosen for the part, walked on the stage surrounded by shimmering girl angels. There is no way Gabe would have done that! You see, since he started school, he has really found himself. He is one of the 'lads', and has firmly established himself with a big group of friends. He goes for 'tea and play' after school some nights - and has been known to not want to come home. He is such a normal little 4 year old boy that many of the other parents of his school friends simply have no idea as to what our little man has been through. You would have no way at all of knowing. He is, quite simply, amazing.

He is very excited about Christmas. He has written many letters to Father Christmas and asked for everything under the sun - including some toilet roll when we ran out last week. He asks me how to spell things and before I know it there is another letter sitting in the fireplace waiting to be sucked up the chimney to Lapland.

Little Sister is doing well too. She really misses Gabe when he is at school but enjoys having the one to one attention with me on the days I don't work. She is doll mad, and is still insistent on calling Gabe, 'Babe'. It is clear it is her name for him and she won't budge. She is more than capable of saying Gabe, but won't. For the most part, he does not mind, but from time to time, he shouts 'DON'T CALL ME BABE'.

I have found the transition of not blogging and settling back into a 'normal' life, frankly, very hard. Sometimes I look at Gabriel and am overwhelmed with love and joy at how lucky I am to have him with me today, and totally unscathed at that. At other times I look at him with an uncontrollable fear that our world could so easily turn upside down in the blink of an eye. Sometimes I am on top of the world, and at others I feel this terrible sadness at what he has been through, at what we have been through, and at the battles faced today by so many other children around the world. I think of other mums who are not as lucky as me and whose children have not survived, - I can never forget dear sweet baby Vivi, and Holly Calenti. I feel irritation when people complain about silly things, and then find myself doing the same and feel nothing short of shame. In short, I have come to the conclusion that I am forever changed by what has happened and I have to learn to live with the new person that I have become.

Gabriel's next MRI is booked for 7 February. The Team are keen to push it back a little further as they feel it is the right thing to do and will be less invasive to his life. The scan will be about 5 months from our last. If there is a reason to scan before that, they will without hesitation. As a family, we are happy with this decision

I also have some really lovely news to share with you. I am 18 weeks pregnant and our baby is due on 23rd May. I only told Gabriel today - his smile was the biggest I have ever seen and he jumped around shouting 'YES - We are having a baby'. He then ran to tell Daddy - as if he didn't know - Daddy has witnessed the exhaustion and constant sickness that is only starting to subside now. Gabe then turned to me and said, "Mummy, I have just thought of something... we are going to be the Davies 5. Yay' I thought that was just lovely.

So all that is left for me to do is to wish you all a very merry Christmas and New Year. All going well, I will not be checking back in until February 2011. As ever, I ask that you continue to pray for Gabriel and for his continued recovery.

As the Davies 5 to be we want to move on and continue with our recovery. But much to do until May 2011 - and most of all, getting Gabriel through his next scan.

Gabe's Mummy

Looking to the future

2010-09-22T15:43:00.008+01:00

Two years ago (tomorrow), a decision was made to give Gabriel a chance to fight his cancer. A year ago, Gabe was recovering from his intensive treatment. Today, Gabriel is at school - happy and healthy.

A wise AT/RT parent once told me to focus on seeing Gabriel in his school uniform. Look to the future and envision him in it. It strikes me that recently, I have been doing a lot of looking back rather than looking forward. I constantly think about what Gabriel has been through, what I have been through and what my entire family have been through. Sometimes I find myself questioning how we survived some of the particularly low points, although I know the answer is because we had no choice. Sink or swim. We swam.

It also occurs to me just how much recording our day to day life during Gabriel's battle has helped me. In a way it kept me strong and it helped save me. At some of the lowest points in the last two years, I wrote down my true feelings. That helped. Other families now look at our blog and get inspiration that their child too, like Gabriel, might one day start school.

The sadness at what Gabriel has been through does not go away. If anything it sometimes feels worse. The unfairness of it all. Gabe is so well, frankly unscathed by the intensive medical intervention that his little body has faced to keep him alive. He has no idea that he has battled cancer. He does not know the word 'cancer'. He has no idea that we live life scan to scan. He has no idea that we were told he would die. All he knows is that he felt sick, and Amos and the Team stopped him feeling sick. We will tell him more when the time is right. But that time is not now.

And so, to the purpose of my blog entry.

It is with much thought that I am going to bring to a close recording our family experience with childhood cancer. Gabriel's life, since he was 2, has been open for the world to follow. The highs, the lows, the milestones. To an extent, my life over the last two years has also been. I have been honest, open and frank about all of my feelings. But now, in order to recover, we need to move on and in so doing, make our family life private once again. Gabriel needs privacy, he needs to have a chance to be perceived as just being the happy healthy little boy who has just started school rather than the living miracle that he is. As a mother too, I need to move on with my life. I need to be the mother of the little boy who was once very sick, but who is now a happy, healthy and strong delightful child. I need to move forward.

So please take silence from me to be an assumption that all is well with Gabriel. I will update at important times such as scan results as I firmly believe the other AT/RT families out there need to know when a child is continuing to do well. But no news is good news. I also know that many of our readers, worldwide, have grown to care for, even love, Gabriel and you too will want to know his continued results. I ask that you continue to think about him and please do not forget him in your prayers. He has a long way to go before he is out of the danger zone.

And finally, to our followers. Thank you for being with us on this long and terribly hard journey. Thank you for understanding me and supporting me. But above all, thank you for caring about Gabriel.... Our Precious Gabriel.

Gabriel Mummy, Christine.

The results are in......

2010-09-13T17:06:00.002+01:00

NED, pristine, clear, perfect - pick any of them, they all mean the same....

that our world keeps turning.

Thank you for the prayers, messages and continued support.

Gabe's Mummy

Scanxiety

2010-09-12T19:04:00.002+01:00

Another AT/RT mum coined the word 'scanxiety' - it says it all.

We are very anxious about tomorrow's scan, sometimes I feel like the blood has drained from my body when I find myself thinking about it. There is really not much else to say bar this - he looks well, he is happy, he is the very picture of health. He is my pride and joy. There is nothing to suggest that we should have anything but a good scan result - but that does not stop the fear that makes me feel sick to the pit of my stomach.

So please, for the next 24 hours, think of and pray for little Gabe - and the all important NED result that we must have. Three little letters, that when put together, mean everything.

Gabe's Mummy

A day to remember

2010-09-06T19:05:00.017+01:00

I remember our first week in Addenbrooke's only too well. It was boiling hot and there was no air conditioning. Little Sister was 5 weeks old and her skin reacted to the heat - she was covered in angry red patches that only cleared up when she was taken away from the hospital - but that meant being taken away from her parents and her big brother. To make matters that little bit harder, the hospital was undergoing extensive renovations at that time. All I could hear was the sound of banging and drilling. I knew that the brain tumour inside my little boy's head was intensifying every single sound, and I had brought him to a building site. I did not have the fight in me to be angry - but it all just added to my feeling of utter helplessness and despair. Yet again, I was failing him.

I remember in that first week I wanted to have Little Sister baptised - there and then - by his bedside. But the hospital chaplain would not let me. You see, they only baptise children at hospital if it is deemed 'an emergency'. In my eyes it was just that - I had a five week old baby girl and my 2 year old boy was dying. I wanted her baptised before that happened. I just wanted him to be a part of as much as possible. That meant everything.

The hospital chaplain and I compromised and a 'naming ceremony' was carried out beside his bed. It was OK, but not what I wanted. Following on from that day, life went from bad to worse as we were told about the second tumour that was on Gabriel's spine, and then of course the diagnosis of AT/RT. We came home under the care of the local Children's hospice. It was utterly hideous -no other word can describe it.

On the first Sunday we were home, I went to our church with my parents and I sobbed uncontrollably. I can remember people looking at me but I did not care. I was desperate. Father Denis was away and there was a priest standing in for him whom I had never met. I went to see him and he kindly offered to come straight to our house to administer the Sacrament of the Sick. He also offered to confirm Gabriel and kept telling me that once he had been confirmed, he could never be confirmed again. I can recall being angry by this and told him that could not possibly happen because Gabriel was dying. But he kept saying it again and again. I found that very frustrating and seemed such a pointlessly cruel thing to keep saying. Possibly because he had angered me, possibly because I did not know him, I declined.

Father Denis came to see us days later and offered to baptise Little Sister in our home, and to confirm Gabriel at the same time. Confirmation in the catholic church normally takes place at the age of 14, but because Gabriel was so tremendously ill, an exception was made. And so, in August 2008, Gabriel was confirmed and Little Sister baptised on what was, undoubtedly a very sad day. We did not know how many days, weeks or months we had left with Gabriel and I felt not only sad for me, but for this tiny baby who had been born into such a torn apart and tremendously sad family.

Baptism and Confirmation is about joy but my recollection of that day in August 2008 is of despair and sadness. So Daddy and I decided to change all of that and on Saturday we held a 'Mass of Thanksgiving and Celebration" at our local church. Little Sister was dressed in white and we renewed both her and Gabriel's baptismal vows. The celebration was about joy and happiness to celebrate Gabriel and his wonderful Little Sister, who is not mentioned with nearly the same frequency as Gabe in this blog (for obvious reasons) but who is equally loved and adored.

This time our families were present and it was a truly wonderful and happy day. Gabe and Little Sister were not half as naughty in church as normal, but that could have been to do my threat that I would cancel 'Magic Dave' the magician, who I had booked for the kids after the service.

Everything felt right about Saturday, my only wish was that we could have invited everyone who has helped us over the last two years, but our budget would not stretch to that there are so many of you out there. We asked those that did come not to bring gifts but should they wish, to donate to the Sick Children's Trust, which is the charity that funds properties such as Acorn House at Addenbrooke's, which provides a 'home from home' for the families of sick kids. £500 was donated!

I think the best way is to sign off with a photo of Gabriel and Little Sister from Saturday (taken by our good friend Lee), and also one of Little Sister and her much loved Grumpsy. But before I do go, please keep Gabe in your thoughts. His next MRI scan is a week today (13 Sep) and my scanxiety has already started!

Gabe's Mummy

Smiles all round

2010-09-02T21:00:00.002+01:00

Daddy and I picked up a very happy little - sorry - big boy from school this afternoon. Grinning from ear to ear, polo top all untucked and messy, bursting with enthusiasm. He told me he played with his friends Jake and Jawdan today and had no time to make any other friends, but will make some tomorrow.

I feel like I have had my first day at school - he is crashed out asleep and I think I might just go and join him.

Thanks for all your good wishes.

Gabriel's Mummy

A proud day

2010-09-02T09:35:00.006+01:00

Here he is, our big school boy looking handsome in his uniform.

Mrs Brown is his teacher and she came right over to me. She was kind and told me she knows all about Gabe and is going to keep a note of everything he eats and how he gets on. I felt confident and know that we have picked the right school for him.

As I type ths entry, he is in school - I left him with his friends Jawdan and Jake from Nursery. His lip wobbled a bit and I said, "come on Gabe, don't be soft" (not the normal sort of thing I would say to him but do not want him to be picked on for being wimpy) - and he stopped wobbling, smiled and off he went. I seized the moment and fled.

Do I feel teary? Do I feel strange?

NO!!!!!!!

I feel utterly amazing. A day has come that I never thought would and I am the happiest, proudest person in the world (although Daddy, and looking at Little Sister in this photo, are close contenders). Little Sister should not be forgotten in all of this. It is a big day for her too, her big brother will no longer be at nursery with her so she is being brave being a big nursery girl on her own.

Gabe's Mummy

The end of an era...

2010-09-01T20:23:00.010+01:00

Today marks the end of a big era in Gabriel's life.

Today, he has completed his last day as a nursery boy at Fordfield House. Tomorrow he becomes a schoolboy as he joins roughly 57 other 4 year olds who will be starting at Templefield Lower School.

He is pretty pragmatic about the whole thing and whilst he has dutifully tried on his uniform, he has not wanted to 'practice wearing it' in stark contrast to Big Girl Cousin who also is due to start 'Big School' (albeit a different one) and has proudly paraded her uniform on a daily basis for all of the family to admire - I guess it is true, men really are from Mars and girls from Venus.

Gabriel leaving Fordfield House brings to an end a large comfort zone in my life. I know I have said it before, but returning to work post Gabriel's treatment ranks highly as one of the single hardest decisions I have ever made. I did not know if I was making the right decision but I had an instinct that the best thing to do was to try and make our family life as normal as possible. Miss Carole at Fordfield House held my hand through that process. On my three working days, knowing that Gabriel was in her charge made me feel totally safe and comfortable - no ifs, no buts. I knew that Miss Carole and her staff would look after him and nurture him whilst I had some degree of escape from the world of childhood cancer (earning an honest crust at the same time). Fordfield House has been a life line to us and I feel quite scared that as of tomorrow, he will be in the charge of others who have no real idea of who he is, what he has been through, and why he is just so incredibly special.

I have been to his new school, I have met with the headmistress who has been very kind and understanding. I hope that in time to come, I will feel the same about her as I do for Miss Carole but am not sure if that will ever be possible. Miss Carole has snapped sense into me at moments of my despair and I entirely credit her for giving me the chance to have some normality during such hard times and for helping Daddy and I give Gabriel as wonderful and normal a childhood as possible.

But it is not just Miss Carole alone who made this possible. Many of the key workers at Fordfield House installed confidence in me - and whilst I am grateful to each and every one of them (they know who they are) there is one who has played the biggest part in my life. She has seen me cry - crumble really - she has consistently helped me and has been a true ambassador of Fordfield House. She looked after Gabe when he first went back to nursery and is now the main charge of his dear feisty Little Sister (including helping me potty train her (or rather I have helped her))! Thank you Miss Tiff.

Before I sign off with what has been a far longer entry than I planned, there is something I just have to say.

I am simply thrilled, overwhelmed really that Gabriel is starting school tomorrow. I recall the weeks after he was diagnosed, seeing little boys in their school uniforms, seeing little grey trousers for sale in shops, such sights would reduce me to tears because I did not expect that Gabe would ever live long enough to start school.

Well tomorrow, he is doing just that... and for that alone I will never be more thankful.

Gabriel's Mummy

A very special trip

2010-08-29T19:08:00.007+01:00

I am not sure really where to start in trying to get over just how uplifting and spiritual our trip to Lourdes was. Gabriel called the trip "my treat" and kept repeating how Little Sister could not come as she was only 2, but because he was 4 he was taking this special trip on the plane with mummy. He smiled from the start of our trip right to the end. He was brilliant company and as good as gold. He did miss his little sister though, "I am missing my Immy," he told me, "Daddy too but he does not need me quite like Immy does". He was right, Daddy reported back that a certain little girl was quite lost without her much loved big brother.

Our pilgrimage was everything I wanted it to be - and more. I had to fight back tears as I watched Gabriel touch the walls of the grotto. He almost seemed to take on an added energy. He loved filling up his Our Lady shaped Water Bottles with Holy Water and he guzzled so much, it was almost like he needed it. He kept telling me he was thirsty and could I pass him "my lady for a drink", which I would do. On one occasion he wanted two of his four bottles and when I asked him why, he replied "so my two our ladies can have a fight".

After our evening meal, we attended the torch light procession. We joined thousands of others and walked in procession singing Ave Maria - Gabriel whispered to Nonna, "I don't know the words to this one so I'll sing Ba Ba Blacksheep" - which he did, and for that, I loved him even more, if that were at all possible.

There were many emotional and spiritually uplifting moments of our trip but I think the greatest of all was sitting in silent prayer in St Gabriel's chapel - the very chapel where I believe our miracle started. I always thought there must be a reason why the name Gabriel leapt into my mind the second he was born and now I know what it is.

Gabriel's Mummy

His ears are clear...

2010-08-23T11:07:00.002+01:00

we fly this afternoon.

The eve of Lourdes

2010-08-22T20:16:00.003+01:00

Well, we have had no more screaming in the night - or night visions for that matter. We have had the odd complaint of a sore ear but to be honest, I cannot work out if that is genuine pain or a simple desire for calpol (it is quite yummy so I don't blame him). I took him to our GP on Friday morning who said his ear was still a little pink but as far as he was concerned, he is good to fly. Ever the cautious (neurotic?) mother, I have an appointment for tomorrow morning for one last check and hopefully, we will be boarding a plane later that day - destination - Lourdes.

Many of you will totally understand why I am keen to take Gabriel to Lourdes, but very few of you will know the exact reason why. Now is the moment for that explanation.

2 years ago, 7 August 2008 to be exact, we were told that Gabriel had no hope of being cured. As long as I live, I will never forget Gabriel sitting on my knee at home in our lounge, days after we left the hospital, sweating in pain from the tumour that was still on his spine. I was crying and saying to Grumpsy that I thought that the 'months' we had been told was more like days. Gabriel could barely move for pain. It was horrendous.

Very shortly after, Nonna and Grumpsy took the decision to take a pilgrimage to Lourdes for Gabriel who was simply far too ill to travel. We had no hope and we needed a miracle. In my heart, I had accepted that my child was dying but it did give me some comfort that my parents were doing this for us. But they nearly did not make it there, their plane was delayed so they missed their connection from Paris. Grumpsy, who lets just say is normally more than capable of arguing his corner, had no fight left in him and both he and Nonna were reduced to tears. They just wanted to get to Lourdes and even that seemed impossible. But then my mum's wonderful friend, Trisha, who had decided to travel with them recognising they needed support, negotiated with the airline authorities on their behalf. She explained why they needed to go to Lourdes, and through one way and another, she got them there.

While they were in Lourdes, Daddy and I took Gabriel to an appointment with Amos. The appointments were always the same. I could not speak because I would cry, Daddy would go armed with sheets and sheets of papers printed from the internet to discuss different types of chemotherapy, but in particular vitiman C treatment which by this stage he was pinning our hopes on. But after each appointment we would come away with our heads bowed. Amos would have patiently listened to Daddy, but time after time justified why each and every suggestion of Daddy's would not work. AT/RT was simply too bad a cancer to beat.

But on the 10 September 2008 all of that changed. We took Gabriel to see Amos and I will never forget these words "we need to give Gabriel a chance". At that appointment on that day, everything changed. We moved from palliative care to treatment and suddenly the word 'hope' started to be discussed. We constantly heard the words 'experimental' but that did not matter - something was being done and that meant everything.

I rushed outside to telephone Nonna and Grumpsy, but I was diverted to voicemail. So I left a message - the words of that message I will also never forget.

"We have our miracle. They are going to try and treat him".

And where were Nonna and Grumpsy at that precise moment?

On their knees praying in St Gabriel's Chapel, Lourdes.

Gabe's Mummy

Red ears

2010-08-16T19:44:00.009+01:00

Aunty Toe phoned me this morning, she was worried about me having read my last post. She commented about the fact that when she had seen me on Friday I had been in great spirits, yet within two days my blog entry sounded so awful. I guess she was wondering whether or not I was putting on a brave face on Friday. I was not. You see, I have days when I think I almost forget what he has been through, and then something happens, like the earache on Saturday night, and it all comes crashing back. This is the reality of the fine line that we walk.

This rollercoaster ride that is my life is one of the things that I find the hardest - I sometimes ponder if I would have been happy and worry free all of the time had Gabriel not become ill - but then I remind myself of the stupid and pointless things that used to worry me, upset me, stress me out....I have learnt a lot.

So as I played on the beach with Gabe, Little Sister and their four cousins, I thought more and more about Boo's words - if there is something going on the brain - the patient gets sicker and sicker. As I watched him running in and out of the sea, roaring with laughter, living life to the full, he just did not look like a sick child in any way. Yes, very thin, but not at all sick.

We left North Wales after a lovely BBQ (we ate fresh trout (including Gabe and Little Sister) caught by Gabe's cousins Cari and Caim), and then we drove home. Gabe and Little Sister talked none stop until exhaustion took over and they finally succumbed to sleep.

This morning, I took Gabe and Little Sister to Addenbrooke's. We saw a member of the Team whom we have not met before. She told Gabe that she knew all about him from Amos and Gabe looked as pleased as punch. For the second time in a month, Gabe had the full neuro checks. I could have leapt for joy when I heard the words "red ears". He has a viral ear infection which is probably the tail end of the virus that knocked him for six. I am relieved BUT I will not rest until we have his next scan.

Between now and then, Gabriel and I are due to fly to Lourdes in France with Nonna and Grumpsy. At the moment, he is unable to fly and I have been advised to have his ears checked by our GP later in the week, if they are better, we will go.

Gabe's Mummy

Honesty

2010-08-15T10:15:00.003+01:00

The whole point of my blog started out at being a space to keep family and friends updated as to how Gabriel was progressing with his cancer treatment - I found it too hard to say the words and writing them seemed to be a good solution.

It soon became a lot more and now, in addition to sharing updates about his progress, it is also aimed at giving others an insight into what life is like, as a mother, living with a child who has been diagnosed with a grade 4 cancer. It is meant to show the difficulties, the fun times, the highs, the lows.

Because of that, I always try to be totally honest. And at this precise moment, I am going to explain honestly how I feel.

I am terrified. Absolutely terrified to the point that my hands are shakey. I have spent some time looking on the internet at whether this sporadic sore ear of Gabe's could actually be something sinister, and the answer that I seem to be finding is yes. The fact that the pain is not persistent, the fact that he could not keep still because of the pain, the fact that it happened before a few weeks ago and went as quickly as it came, and the fact that it has happened again in exactly the same way. The fact that it happens in the night when he is fast asleep. It all could suggest a possble build up of pressure in his brain.

Now, I know I am not a doctor. I know that it could be something and nothing. But I also know that it could mean the absolute worst thing possible. There is no use telling me that I should not look on the internet - it was looking on the internet that first guided us to realising he had a brain tumour - all of the doctors refused to believe us and I firmly believe that without the knowledge gained by us from the internet, he might have died before he was diagnosed. And in any event, it is too late, because I have already looked.

My beautiful kind and funny little boy has bounded off to the beach with his much loved Little Sister and Nain. Daddy (who is as scared as me) has followed and I am waiting for Boo on Ward C2 to call me back so we can talk through what this earache could or could not mean.

So honestly, hand on heart, today I am feeling scared. Looking at him now, you would never have believed the pain that he was in last night. Be it irrational or not, there is nothing I can do but talk to Boo, and then hopefully take him in tomorrow to be assessed.

Whilst blogging, Boo has called.

The moment I heard her voice I felt like I was talking to someone who actually knows her subject matter. She is quite sure that his ear pain last night is a grumbling ear infection, albeit that he does not have a temperature. She also said that ear pain is not a normal sympton of a tumour and that when something is going wrong in the brain, the patient continues to go downhill rather than bouncing back (like he did from his recent virus).

I told her what I had read on the internet, she told me not to look on the internet.

She has told me that he is allowed to have normal childhood illnesses and that it does not have to always be a brain tumour. I accept the theory of this but the reality is that it is hard to be that rational. I am taking him in to see the Team tomorrow, although Boo did say that another doctor could look in his ear, but the problem is I have lost so much trust.

I also told her about "the lady in the night". She laughed at this and told me her kids see "all sorts of people in the night" and that he was probably dreaming still.

I feel a little better, just a little. I think the best thing to do is to keep my fears tucked up inside me, well away from Gabe and Little Sister, and to just focus on having a nice day with my lovely family.

Gabe's Mummy

Stranger in the night

2010-08-15T08:30:00.005+01:00

Something really strange happened last night.

Let me set the scene.

For the second time in the space of a month, Gabriel has woken up at 11.30pm pretty much screaming in pain complaining of a sore ear. I am trying not to feel too frantic as Gabe is quite a dramatic fellow, and a stubbed toe would cause a similar response from him whereas Little Sister would cry for a few seconds and quickly move on. But nonetheless, it worried us a lot.

We are staying at Nain and Taid's in North Wales and as we waited for the calpol to kick in, we thought of all the 'nice' scenarios that could have caused the sore ear - sleeping in a funny position, wind getting in his ear (we had spent much of the day on the beach - but in all honesty, it was not that windy), sand in his ear, ear infection (he has no temperature), to mention but a few. We all tried our best to skirt around the horrid words 'brain tumour' but I know what we were all secretly fearing.

Gabe soon dropped off to sleep, but awoke again three hours later. This is when we had our strange moment. He was begging me for calpol, which being paracetamol based, meant I could not administer a second dose until 3.30am, and it was just 2.30am. He was climbing all over the bed that I was sharing with him in quite a manic way saying things like "I am getting sick" and "my ear is attacking me". He then got off the bed and asked me to follow him. Wondering if he needed the toilet, I followed him, holding his hand. He stopped at the top of Nain's stairs and just stood there and stared for what seemed quite a long time. Then he pointed. "Whose that lady" he asked me. Now, being as blind as a bat, I could not see any "lady". I waited a few moments and calmly said to him, "Can you see someone Gabriel". He replied, "yes, a lady". Those of you who know me will know that I am very easily spooked so at this precise point, feeling more like Shaggy than Thelma from Scooby Doo, I suggested we retreat to our bed, which he was happy to do. I then grabbed my specs and braved a second look. There was nothing there - and nothing that to my mind could have been mistaken for a figure in the night.

Gabe woke up several times over the next hour, and following a phone call to ward C2 at Addenbrooke's to see whether I could break the instructions on the packed of calpol (I could not), I administered the second dose of calpol at 3.30am. Within half an hour he was in a deep and settled sleep. I was not. Not only was I terrified of what had caused the earache, I was also feeling totally spooked out by the 'lady in the night'.

So to this morning, Gabe leapt out of bed with a spring in his step, telling me that his ear no longer hurt. He was like a different child. When questionned, he said he could remember having a sore ear and that it was so sore, it made his tummy hurt, but it did not hurt anymore.

With day light I had new found confidence and the Thelma in me could not resist questionning Gabe about the 'lady in the night'. However, the lawyer in me kicked in and I knew not to ask him leading questions and put words into his mouth, after all, he is only 4.

So I asked him if he recalled seeing anyone last night. "Yes", he replied, "I saw a lady" He went on to say "she was the guard of the house". After some further light questionning, he told me that she had a black face, that she did not frighten him, she was kind, she was not looking at him, and that she had no shoes on. He then told me she was Jesus.

I must admit to finding the whole conversation a bit spooky even though I know that he may well have been sleep walking, maybe still mid dream, but he did seem to recall the event with much ease. He also told me that she protects 80 other houses.

So this morning, I am a bit confused. Gabe is back on form being his normal lovely self. I am obviously far more concerned about this stange ear ache in the night (for the second time in a month) than I am about "the lady in the night", but deep down I hope he did see something special, and that it is that something special that is holding his hand and guiding him away from the nightmare of AT/RT. Daddy however thinks that it was that a couple of cardis on the bannister and has spent several moments this morning, recreating how they could look like a "lady in the night".

Gabe's Mummy

How far we have come

2010-08-09T20:04:00.002+01:00

On Saturday, friends of ours (who we have not seen since Gabriel was diagnosed) came to visit for the night. I was at university with Zoe, and later at bar school (when training to be a barrister) with Jonah. I introduced them one News Year Eve.... they married a few years later and now have two lovely boys, ironically born within months of Gabe and Little Sister. I credit myself with matching up such a great couple and was quick to remind Jonah that he has me to thank for a fab wife!

So on Saturday, 7th August, I spent the day laughing, talking about old times, watching Gabriel and Ben (who are near enough the same age) play and Little Sister follow the "big boys" round, whilst totally ignoring Ben's little brother, Toby. Just once or twice my mind flashed back to what had happened two years ago to the day - the most horrendous day of my life when we were told that Gabriel had AT/RT, that it was untreatable, and that he had months to live... If only I had of had a crystal ball.

It was wonderful to see Zoe - we talked and we talked and we talked - it was like we were 18 again. I tried not to stray onto the dangerous topic of cancer as I knew it would be too much and would set me off in tears, and all in all, we did a jolly good job of just having a great time and enjoying ourselves.

Of course we had to talk about what had happened to some degree. Zoe was very open about how much she admired me for coping over the last two years. But the answer is simply this - I had no choice. I am not super woman, I am not special, I am just me - and my children each have one life to live and I will be damned if I let anything ruin that. Yes, Gabriel has been dealt a pretty appalling hand, but this weekend - watching him play - unless you noticed the scars on his spine, you would never have known what he has been through.

Gabe's eating is improving and he has not mentioned any of the words that trigger hysteria from me, so all up, life is good!

Gabe's Mummy

I cannot relax

2010-08-01T19:51:00.006+01:00

In general, Gabe has bounced back although we are not doing particularly well with his eating, not quite back to square one, but not far ahead of that. Once again, I am entirely in the hands of the professionals as they guide me through how to deal with a little boy who simply has little to no interest in food. I do absolutely everything I can think of. We cook together - he loves that. We eat together as a family and we are very relaxed at meal times so food is not "an issue". It is hard to watch him struggle to eat a few pieces of pasta when his little sister can wolf ten times the amount in seconds. He is not tempted by anything naughty like chocolate (although he likes sponge and custard), and our weekly shopping bill has rocketed as I buy whatever he fancies- which mainly he then refuses to eat. But despite all of that, we are just massively relieved that he does seem to have turned a very big corner from the beginning of the week.

Today had me worried again though. The Davies 4 went on an afternoon walk to buy some milk and Gabe fell asleep. When we arrived home we let him sleep on, and then we set about trying to wake him up - ie we unleashed Little Sister. Not even her company (and believe me she makes her presence known) could stir him. He slept and he slept, and he slept some more. Meanwhile, Little Sister charged around, a picture of health and so much fun - she is now the same age that Gabriel was when his illness could no longer be excused away as being a childhood virus. Eating without him at the dinner table, playing in the lounge before bathtime, all of our family life seems so empty when he is not there. I think it is because it is all too easy to remember the time when he was desperately ill and his afternoon "nap" would frequently stretch to the following day.

But as I put Little Sister to bed tonight, I heard a little voice giggling. I went in to Gabe's room to see him lying there, smiling in his sleep. And then he woke up. "Is it morning?" he asked. Now after a busy week Daddy and I often look forward to our Sunday nights when we relax, have a few glasses of wine, and watch TV. Not tonight. Our little man is wide awake, eating cubes of cheese, and as I sit here and type, I can hear him chatting away to Daddy. I am consumed with relief to be honest, but I also know that I won't be able to relax until after our September scan, and of course, only if the result is a good one. Until then, I will be watching him, scrutinising anything and everything that does not seem right whilst pretending that everything is fine and that we are just a normal family.... whatever that may be.

Gabe's Mummy

On the mend

2010-07-28T20:54:00.002+01:00

Gabe had a significantly improved day today - not much eating but he managed to play lots. Food seems to repulse him so I am not pushing him too much until we can remind him once again that eating is fun.

We visited a local farm today which we have not been to for a long time. It was quite hard bringing myself to go there as it brings back memories of my 2 year old boy, on palliative care, trying to play with healthy children all around him. I can remember thinking life was unbearable at that point. I'm glad we went today as it gave me a new memory - a good one.

Our nurse, Harri, called today to say that Gabe's scan will not be on Monday, but on 13 September. I guess that is a good thing as Boo's assessment of him yesterday did not give them any urgency. The September scan will be just over 4 months since his last one so I am happy with that.

Gabe's Mummy

We are back

2010-07-27T19:27:00.005+01:00

Today has not been easy and after a difficult night last night, Gabe literally refused to eat anything today and looked as pale as a ghost. It is hard to even try to be rational and too many things were reminding us of how he was 2 years ago, and into his treatment. Shallow breathing, groaning in his sleep - just horrid things that will be all to familiar to the oncology mums and dads out there.

So we took him.

Amos had a clinic at another hospital today so we saw Boo, who we just love. I saw her first to tell her all about why we were, well, freaking out with anxiety. Naturally, this involved tears on my part. We then brought Gabe in and he looked like the cat who had eaten the cream - delighted to be in her presence. He showed off, he was like a performing monkey. I felt totally stupid like I had been making the whole thing up. She checked him over from top to toe, including the all important eye test to make sure there was no build up of pressure on his brain.

She is quite sure he has had a virus and because of what he has been through, it knocks him for six. He is on anti sickness drugs and another one to stop tummy cramps - he took both like a good boy. He even ate some of his tea and then had a play out in the park in our road. He is now watching Ben 10 on my portable DVD player in his bed as a special treat.

Boo has arranged an MRI scan for Gabe which is scheduled to take place this Monday at 9am. This gives me comfort. I find it very difficult to hear the NHS criticised when I see the wonderful care that Gabriel receives at the hands of Addenbrooke's. They simply are the best.

I promise to keep you well updated and before I sign off (I am emotionally worn out) I just wanted to thank everyone for the messages of support that have flooded in. Thank you especially to all the other oncology mums, worldwide.

Gabe's Mummy

We're taking him in...

2010-07-27T12:07:00.004+01:00

Hi, just a quick update.

Following from Mummy's last post, Gabe had a rough night. He cried lots, waking up in pain and was generally uncomfortable. His breathing seemed off pattern, he's lost weight and to say we're worried is an understatement. He finally fell asleep in the early hours cuddled in my arms. It's the whole familiarity of the situation which worries us.

Despite this, Gabe woke up in good spirits and was very much looking forward to playing with his friends. So Mummy has taken him to see them, whilst I stay home to work and call the PDU. Following my conversation with PDU, we're taking him in to be seen.

We pray that he's ok, that its nothing more than a virus.

Gabe's Daddy.

The worry goes on

2010-07-26T20:30:00.004+01:00

We have had a great weekend, but I am still very worried. Those of you who walk in "my shoes" will understand the fear that grips you the moment things don't seem, well, quite right, and it is safe to say I am totally and utterly 'gripped' with that fear at the moment.

I have watched Gabe like a hawk all weekend - and what a lovely one it has been. Seeing Russell Watson at Woburn Abbey on Saturday night was tremendous, and knowing that he too has overcome brain tumours (which he openly talked about) made me feel really close to him in a stange way- is that a bit odd? OK - Don't answer that. At one point, he shouted out, "isn't it great to be alive?" and Nonna was up on her feet, clapping her hands in the air - because it is, and we know it.

The kids all loved the open air concert. At about 10pm Gabe fell asleep in my arms as Little Sister sat on Daddy's shoulders clapping her hands in the air. I confess that my tears fell as one of Russell's supporing acts sang a beautiful classical song to Gary Barlow's piece of music "Light up the Sky" that 'Take That' sing. It reminded me of Holly Calenti, who lost her battle earlier this year, and her mum, my dear friend Kerry. As the music played, I held Gabe and thanked God that I still have him.

We arrived home late, slipped the kids to bed, and then I quickly wrote my speech. By that stage, the fear had almost gone because I knew in my heart exactly what I wanted to say. So I wrote it in precisely five minutes, and went to bed.

The next morning, I went on stage, and I gave my speech. My voice did not break and I felt totally confident. I could see people looking at me and they were really listening to what I had to say. I don't often feel it, but at that point I felt really proud of myself. I hope I don't sound boastful saying that. Gabe then started the race and I ran, not quite like the wind, but finished in 26 minutes.

And now to my worries.

What can I say? He is just not right. He is totally off his food. He says words that scare the hell out of me lke - "I feel sick" - "sore back" . I have reported in to Addenbrooke's and had a good chat with Harri, one of the nurse specialists. She was great but NOTHING she or anyone else can say is going to appease me. It is all very well telling me that he may have a virus, or he is just a bit under the weather, etc, etc, but my fears are my fears and I know that the only way to allay them is for him to have an MRI scan. How can I push him to eat and treat him like a normal child when fears of relapse are racing around my brain? I just cannot, no matter how hard I try. So Harri and I are going to speak again on Wednesday and if I am still worried (which, lets face it, we all know I will be) I will take him in on Thursday or Friday to see Amos.

But for now, I will try and focus on that "brave face" which often seems to allude me and despite heaps of practice, I just cannot seem to get quite right.

Gabe's Mummy

Morning fears

2010-07-24T07:47:00.003+01:00

Gabe is delighted with his new room. He said lovely things like "this is the best bedroom ever" and "I want it like this forever" which made the whole 5 days apart worth it....

Until this morning. Gabe woke up with a sore tummy, sore neck and sore back. 'Sore tummy' gives us some comfort that it is not relapse, but the words 'sore neck' and 'sore back' saw Daddy and I exchange glances, the colour drained from both of our faces. Gabe cried in a way that I have not seen for a long time and had a very familiar face of pain. He is now comfortable again and is sleeping.

Daddy and I have agreed to watch and monitor him over the weekend and to phone Amos on Monday morning. Experience tells us that taking him to the local hospital will achieve absolutely nothing save our frustration at knowing and understanding far more about Oncology and Gabriel than they seem to.

Gabe's Mummy

New bedrooms

2010-07-23T18:43:00.006+01:00

After a whole 5 nights of having no children in the house, we are just thrilled that Gabe and Little Sister are coming home. They have had a great time but are now ready to be back with Mummy and Daddy. Whilst we missed them heaps, it really was the best decision to let them have their holiday as during their absence, the entire upstairs of the Davies 4 headquarters has been turned upside down and the grand 'room swop' has now taken place.

Gabriel's new bedroom is fit for any junior power ranger. He is going to love it - big boys bed with a pull out bed underneath for when his 'guests' visit ("the Big Boys Bed"). Little Sister's is a little pink palace - I hope she will love it but expect her to spend most of her time in Gabe's room - where Gabe goes you can be sure Little Sister is close behind.

Decorating the bedrooms this week has felt like we have taken a gigantic positive step. This time, 2 years ago, when we were days from diagnosis, Nain had ordered the Big Boys Bed for Gabe. The plan had been that Gabe's blue nursery would be decorated pink and our baby girl would take up residence in there, and Gabe would take over the bigger bedroom with the Big Boys Bed.

That never happened. When we were told the potential risks of his brain surgery, including the possibility of severe brain damage, we felt that it was crucial to maintain the status quo so as to give him as much familiarity as possible. This sentiment trippled when we were told the horrendous news that his cancer was untreatable. I can remember carrying him out of hospital in a trance, tears pouring down my face, and wondering how other people seemed to be going about their normal every day lives when my world was ending. That was such a strange feeling, everyone seemed to be laughing and smiling. I wanted to shout "STOP, don't you know my child is dying?". But I didn't, I just kept walking, hating everything about this world that seemed to have given me perfection, and was cruelly snatching it back.

And so, we returned home, with our tiny sick child. We kept every single thing as familiar as possible for him. Except he did not sleep in his nursery until over a year later, he spent every single night with me. Even now when I feel anxious about the future I scoop him up and put him in bed with me.

But to the present, the bedrooms are ready and Daddy and I are patiently awaiting their arrival, like a Royal visit. As ever, we have lots planned this weekend including a concert at Woburn Abbey Gardens tomorrow and the Race for Life on Sunday. I am feeling more than a bit nervous about Sunday as Cancer Research UK have forwarded me an 'itinary' which states, in black and white, "10.22am - Gabe's Mum addresses the Embankment" - my friend just told me there will be 10,000 people there - I am not sure if she is winding me up or not but all I do know is that I feel sick at the thought.

Enough worrying about the future.

Gabe's Mummy

Very quiet house / Race for Live on Sunday

2010-07-19T08:36:00.003+01:00

Well, Daddy and I are back home and Gabe and Little Sister are 'on holiday / boot camp' in Liverpool with Nonna and Grumpsy. Nonna, if you are reading this, please bring Little Sister back potty trained and down to just one dummy a night. The reports that have come in so far are that there have been (i) no tears, (ii) our names have not been mentioned; and (iii) both are being as good as gold. Daddy and I, a little less fickle, are missing them heaps already BUT we do intend to capitalise on this free time and have already agreed that it is far better for us to eat out than mess up the kitchen just for the two of us!

Although I have left it a little late, I ought to mention that I am running in the Race for Life in Bedford on Sunday. Gabriel and Daddy are starting the race and I have been asked to go on stage at the beginning of the race to say "a few inspirational words". That should not be too difficult given that the race falls upon the 2 year anniversary date of Gabriel's diagnosis. A few of my friends are running too and others have run in different events over the country. Nonna, Aunty Toe and Little Sister are booked to run with me although Aunty Toe is currently hobbling around with a damaged ankle so it may just be Nonna and Little Sister - we will see. Our sponsor page is www.raceforlifesponsorme.org/ourpreciousgabriel if you feel able to sponsor us. Please do not feel like you have to! I would like to take this opportunity to thank those who have so far sponsored us including Diana, all the way from the States, who in our family, we tend to think of as our Guardian Angel.

Gabe's Mummy

Losing the plot?

2010-07-15T09:14:00.003+01:00

Sorry for being a little quite over the last week - I have been busy being torn in two between work and trying to be the best mum possible to Gabe and Little Sister.

In short, I messed up.

Each year, Fordfield House nursery closes for a short period in the summer to give its hard working staff a decent break and so that nursery can get a good scrub from top to bottom. This year, the closure did not come as a suprise, I was totally prepared and had meticulously planned how I would keep Gabe and Little Sister well cared for and entertained -without disrupting work.

Each and every year, including last year when Gabe was still on his maintenance chemotherapy, Gabe and Little Sister have a mini holiday in Liverpool with Nonna and Grumpsy. Everyone is happy (except probably me who misses them far too much) and the kids love it, Nonna and Grumpsy love it, and to an extent Daddy and I get a bit of a break. This year I had been super organised. Nonna and Grumpsy booked - tick, Peter the painter booked to decorate their bedrooms while they are away - tick, how amazing am I? Or so I thought...

Slight fly in the ointment - I got the wrong week. The children are off to Liverpool next week, Peter is coming to paint, and nursery will be OPEN. It is the following week it is closed - and that is the week that Nonna and Grumpsy skip off to Rome for a holiday with friends. I can even take the blame for helping them book that week. "Are you sure that you have the correct dates from nursery?" Nonna repeatedly asked prior to booking the trip. For some very strange and rather worrying reason, I firmly believed I had. A little voice keeps ringing in my head -"What other mistakes have I made?" .

So the last couple of weeks have seen me working extra days in London, with both Nonna and Grumpsy and nursery stepping in to help look after the kids, so that I can have the week off work to look after them - work too have been very accommodating.

Next week, Gabe and Little Sister fly the nest to Liverpool for a fun packed 5 days - Gabriel, in particular, is too excited to cancel this trip. I will be cramming in the work so that I can have the time off when nursery does actually close the following week, and Peter will still be coming to paint their bedrooms... Little Sister is moving into Gabriel's smaller bedroom with the toddler bed, and Gabriel is moving into Little Sister's much bigger bedroom, on the promise that her cot is removed and it is painted a different colour other than pink.

Gabe's Mummy

Gabe's school induction

2010-07-06T21:23:00.005+01:00

Gabe, once again, made me very proud yesterday.

He was due to attend his school induction at 9am. I was told I had to drop him at the school gate and collect him at the side gate at 10.30am. In the car on the way, we had a chat about how he might be feeling a bit nervous but so would the other children who were having their induction. "I'm not nervous", said my little man "I've been there before". "Righto", I said, and we then chatted through how he should put his hand up to ask the teacher if he needed a wee.

It was not sunny, quite overcast infact, but my much loved sunglasses were staying put. I was doing all that I could to fight back my tears. He gave me a cuddle and off he went. That was it - no tears, no reluctance..... he did not even look back. The moment he was gone, Little Sister burst out crying. "Bring my Baby back", "Baby gone, oh no, my baby gone", she roared. I was a little more discreet, but nonetheless, those tears flowed.

One of the Dads sympathised with me and said this was the third time he was going through it and it never gets any easier. I sobbed a bit more (as I do when shown sympathy) and told him how it was an extra special moment because quite simply, we were told that Gabriel would not live long enough to start school. To me, your child just starting school does not warrant tears - try seeing them in intensive care - but I did tell you I was damaged by all of this.

And then something really strange happened.

The Dad, let us call him 'Kind Dad' stopped, and looked at me. He then told me he did know how I felt, because his older son had been diagnosed with a grade 3 cancer at the age of 2, and that his son had started school - and get this - was about to move on to Middle School which by my calculations makes him about 9 years old. This child had also been treated at Addenbrooke's.

I think Kind Dad was a little taken back when I gushed 'I think I was meant to meet you today' and notably brought his wife and new born baby with him when he returned to collect his son! Little does Kind Dad know that he gave me an awful lot of strength yesterday. It was a very surreal moment that most people could not relate to, yet the one person I spoke to at the school gate totally understood.

And Gabe... well he met me with a big smile, told me he had a great time, played with the lego but that nobody spoke to him and that he played on his own. Little Sister got over his departure very quickly and was pretty reluctant to return to collect him, wanting instead to stay on the swings in the park.

Gabe's Mummy

Game on

2010-07-04T20:16:00.012+01:00

Sports Day at Fordfield House was like a dream come true. I never thought we would see the day when he would join his classmates at the start line, and time after time, charge along to the finish line. I know all of the parents there yesterday were oozing with pride, but deep down, I really think that we were the proudest! You would never have known what our little man had been through - brain surgery, spine surgery, stem cell transplant, his leg in a cast post treatment and teaching himself to walk again. As he joined his classmates on the field, he looked like any other of the children and I found myself questioning just how much other parents knew about the battle he has faced.

Miss Carol and her Team are exceptional, each of them gave up their Saturday to give the parents and the children such an experience. It was like being at a summer fete with cream teas and raffles. Miss Carol welcomed us all and told us that all the money raised that day would go to a charity for deaf children as one of the children at nursery is profoundly deaf. I had no idea. It is very easy to get caught up in our own world without actually thinking that other families at nursery have their own daily battles.

Gabe was not the fastest runner of the day. Far from it. He was probably one of the slowest but he was not in the slightest bit bothered. I felt very proud of him for that. He just did not care that he kept coming last and he just kept smiling from ear to ear. There was one race that involved running to a puzzle, cracking the puzzle and then running to the finish line - "I'll win this one," he whispered to Daddy. He was the last one to reach the puzzle, the first to crack it, and managed to come 3rd! Our boy knows his strengths.

Both Daddy and I entered the parents race. Daddy was horrified that I had not packed my trainers and said I would not stand a chance of winning running in my bare feet. He was quite right and I was knocked out in the first heat, but quite frankly, in a pair of running spikes I wouldn't have won - I was always the weak link in the school 4 x 100 m sprint team. Daddy had deliberately worn his trainers and he made it through the heats to the final. Watching those men charge along was like watching a herd of aggressive elephants charging - but Daddy, like Gabe and me, did not win. His excuse - the race was not long enough for him to gather his speed. What a day. What a memory for me to take away. Thank you Fordfield House for giving me one of the best days of my life.

The rest of the weekend was busy and was finished off by a pool party at Rory's to celebrate his 4th birthday. Such events give me a good yardstick to compare how far we have come. Last year I remember worrying because Gabe seemed to play on his own a lot. Not any more, he played none stop all day with the gang spending most of his time in the pool.

Our weekend was amazing, perfect infact. Gabriel is just doing so well. He is getting stronger and stronger by the day....he is just perfection.......I found myself saying to him yesterday "and God created Gabriel". I can see it now - I am going to make an horrendous mother in law.

Tomorrow is another big milestone in Gabe's world....his induction morning at his new school!

Gabe's Mummy

Today is a bit of a big deal!

2010-07-03T08:13:00.002+01:00

Something is happening that 2 years ago, I never thought I would ever see.

It is Gabriel's sports day at Fordfield House. He is in team Red and has been practicing his races. He has, however, just announced that he does not want to be in the races because he "wants to cheer on his friends". As sweet as this sounds, I think that it is more to do with the fact that Cousin Cari has come to stay for the weekend with Nain and Taid, and to say they are as thick as thieves is a bit of an understatement.

Sorry Gabe - if I am being forced to do the Mother's race - you are doing yours!

Gabe's Mummy

Bravery Boxes - Make a Difference with Gabriel

2010-07-01T21:55:00.003+01:00

Since the idea of introducing Bravery Boxes first came into my mind last Autumn, I have managed to keep both the Oncology Day Unit and Ward C2 at Addenbrooke's hospital well and truly stocked with many small prizes to reward the children for their bravery. This has been acheived with the invaluable help from family and friends.

For those of you who do not know the concept of the Bravery Box, it really is quite simple. When one of the patients has a procedure that they do not like, one that scares them, or gives them pain, there is a box, jam packed with prizes, waiting for them to look through and pick a prize of their choice.

The box is full of prizes suitable for each age group and is aimed at not only the patient, but also any sibling or visitor of the patient. This is because bravery takes on many different forms. I will never forget Big Girl Cousin, then aged just 2 1/2, sitting on Gabriel's hospital bed desperately trying to get Gabe to play with her. He had just been diagnosed with a brain tumour though, he was dying, he did not want to play. Big Girl Cousin was visibly disturbed and confused by that visit. She could not understand what had changed. A prize just might have helped distract her that day.

The prizes that I supply are small, simple and cross the ages from babies to teenagers. Every time I attend Addenbrooke's, I arrive with bags and bags of prizes which range from nail varnish for the girls, whoopy cushions and toy jokes, arts and crafts, toy cars etc, stickers, football cards, little beany toys, and many many more. Everything has to be brand new and I try and vary the gifts to keep the children guessing, but the play leaders always let me know if anything in particular has been popular. For example, one girl in prolonged isolation collected 'little toy ponies' -each cost me just £1 in Tesco.

This month, 'Make a Difference with Gabriel' has been picked to be a part of the green token scheme at Waitrose in Ampthill. I had given up hope of being selected as I applied in February so I really was quite delighted to receive this news. By way of explanation, how the scheme works is that Waitrose allocates a total of £1000 each month and three schemes are nominated. The customer is handed a green token as they leave the store which is then used to vote with. I can see I will be in Waitrose a lot this month -that said, Little Sister has nimble fingers and normally grabs a handfull of tokens so we have a good chance of committing vote sabotage!

Before I sign off, I wanted to mention a few names of those that make the Bravery Boxes possible:
Nonna, Aunty Toe and Nain, who pick up little gifts whenever they are out and about;

Our friend Diana in the States;

Little Sister's God Father, Nick, who randomly gives me £50 donations to fund gifts;

A colleague of mine won £70 and donated his winnings;

Miss Carol and her wonderful team at Fordfield House Nursery who raised several hundred pounds at the Christmas pantomime;

The son of the next door neighbours of Aunty Pat and Uncle Harold - he works in the Disney Store, has never met us, yet has provided several bags of prizes;

Aunty Em's Mum, Judy, who gave me a big cheque in memory of her son Mark (aged 21), who died in a road accident;

Many of my colleagues, who leave bags of donations in my office at work;

My NCT friends, their friends and colleagues;

My good friend Jay;

My neighbours;

and

Most recently, the mother of Little Sister's best friend (Ffion) who held a coffee morning. She raised well over £100 and collected many gift donations.

Thank you to everyone who helps me keep the Bravery Boxes well stocked. I know from first hand experience with my own little man, bravery prizes work, each and every time, they really do.

Gabriel's Mummy

I promised photos....

2010-06-28T20:20:00.008+01:00

2010-06-27T22:03:00.001+01:00

Little Sister is 2.

2010-06-27T21:26:00.008+01:00

We are home after a great family holiday in Cornwall. Thank you to Nonna and Grumpsy! Photos will follow shortly but for now, I wish to wow you with the famous Waybaloo cake.

Our girl is 2 and we celebrated her birthday on the beach with Nonna and Grumpsy, Aunty Toe and her crew. It was perfect. Not one second of that day, or indeed our holiday, did I take for granted. This is probably because June is, without doubt, a hard one for me. I can remember looking at Little Sister when she was just a few weeks old and questionning how I would ever be emotionally able to celebrate her birthday as the date marked the start of Gabriel's symptoms becoming far too obvious to ignore.

We are 2 years on from when our nighmare journey began. I remember Miss Carol, the owner of our much loved Fordfield House, telling me that I had given Gabriel the greatest gift by giving him a sibling and now I well and truely understand what she means. Little Sister worships him. Is utterly dependent on "Babe" and is his little shadow. He cuddles her when she cries and she kisses him when he hurts himself, when he stops crying she says "Babe happy now". Their relationship is special and as their mother, it means the world. Little Sister missed out on so much in the first few months of her life as we tried to get to grips with why Gabriel had suddenly become so ill. I was like a machine - feeding her - wiping up Gabriel's sick - obsessively washing my hands. I just did not want that new born baby to catch whatever 'virus' everybody kept telling me Gabriel had. How little I knew.

And here we are today and a thought occurs to me. Little Sister is the only person in Gabriel's world whose entire life, (save the first few weeks when we were fighting for a diagnosis) has been a part of a cancer family. I feel pretty confident when I say that she is the most beautiful, loving and sweet little girl (not forgetting, fabulous at expressing her emotion) - oblivious of the utter heartache and sadness that she was born into. She has helped make me strong. I hope that one day, perhaps a mother herself, she reads this story and understands just how amazing and important she is to me and how she has helped hold this family together through some pretty bleak times. So thank you our girl and Happy 2nd Birthday for the 20th June.

Gabriel AND Little Sister's Mummy

Heading on our hols

2010-06-19T07:09:00.003+01:00

After a particularly busy week, we set off last night on our summer holidays, which actually start today, but we have broken the journey up with a night stop over at Hotel Babylon (Aunty Em and Uncle Paul's). We made the ridiculous decision of joining the M25 at rush hour as the entire nation battled to make it home to see England storm home to a victorious win against Algeria - (which alas did not happen). Gabe and Immy were beside themselves with joy when we arrived, (as was Daddy as we made it seconds before kick off). Gabe was charging around Aunty Em's house singing 'Come on England'. Although he finds watching the whole game 'boring' he does like the build up and the anthems being sung. Last Saturday night he proudly stood to the national anthem, with his hand on his heart, before shouting 'Come on Wales'. Daddy was delighted - his training all these years had paid off.

As I mentioned, this week has been a particularly busy one - Wednesday in particular - the day of the Waybaloo cake. The day kicked off with a 5 am start so as I could conjur up said cake before work, and so that it would be ready for me to ice that night. My trusty friend Chloe (the one who is not only a fab lawyer, fab fun, but also fab creative cake maker) was booked in for a night of pizza, wine and cake decorating. Heaven in my rock and roll world.

We both were very busy at work that day so we could not sneak out until 7pm. We lept on the first train heading to Bedford. I have been doing this journey now for 4 years and have never yet had to worry that the train to Bedford would not stop at my train station. It always does, always has done, and as far as I knew, always would. Until Wednesday that is - it flew through my train station, and then stopped outside Bedford for a good 10 minutes whilst it waited for the platform to clear (which unfortunately for us was the train that we needed to return back to the correct train station). You couldn't make it up. With time against us, when we eventually did get into Bedford, we leapt in a taxi and headed home - finally arriving just short of 9pm - and then, the creation began. We were up to nearly 2am decorating the most gorgeous girly birthday cake in the world. I am so proud of this cake, I am half dreading Little Sister's birthday tomorrow as I feel like I am going to have to murder it. I would rather wheel it around in a pram, like a new baby, waiting for compliments.

And so to our holiday. In a couple of hours we are heading to Bude to rendez vous with Nonna and Grumpsy who is treating us (and Aunty Toe and her crew) to a lovely family holiday. Of course, as always, I am full of emotion and keep having flashbacks to the days building up to Little Sister's birth and how utterly oblivious I was about how our lives were suddenly about to change with Gabriel's illness coming to light. Little Sister is coming up to the age that Gabriel was when he became truly ill. On his second birthday I nursed him on my lap most of the day and took him to the doctors, sobbing that I thought he had cancer.

Little Sister on the other hand looks a picture of health. She is the boss of our house, the dominant personality, she wraps every one of us around her little finger and her favourite person, without question, is Grumpsy. She is the saviour of our family, she has kept us going. She wakes us up early, she often keeps us awake at night, she throws the most spectacular tantrums and has mastered far too many words and sentences for her young age. She demanded houmus for breakfast on Wednesday morning - and then force fed it to me shouting 'EAT', at 5.30am when she joined me for cake baking. She can command love and affection with the batter of her little eye lashes. She is truly the cutest little thing.

Last year I thought, would be the only year, that Gabe would be with us to celebrate her birthday. Again, how little I knew. For some irrational reason, I feel that I will be able to relax a little more once Little Sister gets past the 2 year 2 month stage that Gabriel was when he was diagnosed. I know that Little Sister is at no more risk than any other child in the world of developing AT/RT, but so was Gabe - and he got it. Hopefully my fears will slow down - thats all I am trying to say.

Gabe's Mummy

For those of you early rises, Little Siser's birthday card will be on milkshake tomorrow morning - I have asked for it to be shown by 'Peppa Pig' or 'Little Princess'.

Almost back to my old self

2010-06-16T09:22:00.004+01:00

I am feeling so much better and once again find that I am now able to enjoy Gabriel and Little Sister without constantly fearing for their futures. I am still keeping myself busy but focusing on doing the things that I enjoy which seems to exclude cleaning and tidying - but I am still doing lots of cooking and baking. In fact, I was up at 5am this morning baking Little Sister's birthday cake - she is 2 on Sunday and we are very excited. The theme of this particular cake is 'De Li' from the 'Waybaloos'. My good friend Chloe from work is travelling back to the Davies 4 headquarters with me tonight to help me ice (she was the mind behind the Power Ranger cake).

I am not just being super organised by getting up at 5am to bake her cake. I literally had no other time to make it as I am at Ladies Day at Ascot tomorrow (with work - yep there are some perks to this job) and then the Davies 4 head off on holiday on Friday, via Aunty Em and Uncle Paul's house, to Cornwall where we will be meeting up with Nonna and Grumpsy and Aunty Toe and her crew. I also have a coffee morning (in aid of the Bravery Boxes) to attend which has been arranged by Little Sister's best friend at nursery, Ffion's, Mummy.

But to now, I had better sign off as Wednesday is, of course, a work day for me. But just before I go, a big thank you to Gabriel's Girl Angie for running the Race for Life in Bristol last weekend.

Gabe's Mummy

'with a little help from my friends'

2010-06-11T19:54:00.003+01:00

To say that my friends have been wonderful over the last few days is a bit of an understatement. I have received messages of support, telephone calls and many texts. Thank you. I have also received messages from other cancer mums who have their own pain to carry - thank you for understanding.. As much as I don't want to be in the 'mums cancer club' I really have met some wonderful friends who equally, do not want to be in our club. It is a horrid club. I don't want anyone else to join!

I wrote to Amos on Tuesday morning. A tear stained letter simply asking him to help me get referred to a counsellor. I don't actually know what I wrote - I just wrote it, and posted it. Instantly, I felt a little bit better, but then I felt a bit embarrassed and wanted to retrieve it. Too late - it was already winging its way to Amos.

You see, I think I know what I need to do to help me handle the hand of cards that life has dealt me. I think I need to talk to someone, and that someone needs to be someone that I do not know. I think I just need to open my heart without worrying that I am saying the wrong thing, or causing somebody else upset, pain or fear for the future.

Amos phoned me the following day. To be honest, I cringed when I heard his voice, but I know that opening up to him and sharing the pain that I feel was exactly the right thing to do. He told me he is already working on getting me some help - I hope that does not mean a straight jacket. So counselling here I come. Hopefully I will be able to get something in place over the next few weeks.

Knowing that I have a potential solution to my ups and downs, I immediately felt better. To be honest, I almost feel back to my old self, almost but not quite. I easily cry still at the drop of a hat, but I don't feel the dreadful sadness that seemed to consume me at the beginning of the week.

I am also feeling good because Aunty Franny has come to stay a few days and let me tell you it is just fab having my best friend here, lifting my spirts and making me laugh. Today, we took Gabriel and Little Sister to the London Aquarium. They loved it. We had lunch at 'Gabriel's Wharf' and we visited my colleagues. I was keen for them to see how well Gabriel looks because they have not seen his since he was a baby - well before he was diagnosed. Gabriel and Little Sister brought out smiles in everyone. That is until Little Sister covered my white office wall in marker pen whilst my negligent back was turned. What can I say? She does not do that home!

So all up, I am emotionally on the mend. Thank you for caring about me and my family. Life is hard, but life is good too. Many people have difficulties and demons to face. I just have to keep my head above the water and not allow myself to sink into the AT/RT world.

Gabe's Mummy

Learning to live with 'normal', the Davies 4 way.

2010-06-08T20:51:00.007+01:00

I am not going to lie to you. Since I stepped off cloud 9 last week, I have been struggling a bit and have felt low at times. Too low.

I hate the fact that the joyful innocence of being the mother of two little children was taken away from me just one week after Little Sister was born.

I hate that I am forced to feel grateful for every day that Gabriel wakes up laughing, instead of the groaning noise (I assume because of pain and sickness) that used to wake him up every single morning during his treatment.

I detest the fact that when he asked me yesterday if he will be a 'grown up' one day, I could not say yes without secretly closing my eyes and praying that our miracle continues.

Most of all, I loathe the fact that in the early days of diagnosis, I was told to plan Gabriel's funeral and that doing so would give me some comfort. How very wrong that counsellor was and how I want to tell her.

There are many things that I hate that are a direct result of what cancer has done to my family. Suddenly, I feel that I have jumped off cloud 9 into a horrid pit of sadness and fear. I am terrified of the future and what it does, or does not hold. I am frequently battling dark thoughts and whilst the 'moto' by which I try and live is focused on enjoying and celebrating each moment, for the last few days, I have struggled. I mean, come on, who celebrates the fact that their child was diagnosed with cancer - and a pretty horrendous one at that - at the tender age of 2? It is just not particularly fair.

This recent low patch does not sit pretty with me. It is just not 'me' at all. I am normally a happy person. Pretty upbeat actually. I would even go as far to say that I can, on occasion, demonstrate a pretty stiff upper lip. Not today though. Once again, I had several episodes of tears. The reason? Well, I think that the reality is hitting home that living with what feels like (as another cancer mum describes it) 'a ticking time bomb' is my 'normal'. I have to learn to live with this 'time bomb', that may, or may not go off, at any point. There is nothing we can do to prevent that from happening, so I have to learn to enjoy each moment we are gifted and hope for the best. But in reality, well, it is tremendously hard to do.

My visit to Addenbrooke's yesterday was a hard one. Don't get me wrong, it was not the actual meeting with Amos that was hard, that was great. He is really pleased with Gabe and Gabe's eating, but wants him"fattened up". I explained my concerns about Gabriel's hearing and Amos has arranged another hearing test, although he is not in the slightest bit concerned and is confident it is 'selective hearing'.

Seeing the other children was hard though. Just how ill they are. Mums talking, being strong. Everyone linked through the horror of childhood cancer. Currently, we are one of the lucky ones, so many - too many - don't get to where we are. I am forever grateful for that. But I guess what I am trying to say is that it is just sometimes very hard accepting that this 'time bomb', which may, or may not go off, is my normal.

Gabe's Mummy

Battling emotions

2010-06-06T21:23:00.009+01:00

If I am honest, some of my week has been quite hard. Although I am not sure why, I am fairly confident it is because I have stepped off cloud 9, and quite frankly, I did not want to. Whilst I have had some pretty good moments this week, I have also had some pretty low ones.

Thursday morning was one such low moment. The reason..... a really hard start to the day. Tantrums from one child (not mentioning any names here but she is pretty small) and cheek from another. In the end, I had to raise my voice (OK, I shouted) and the minute I did, I was full of guilt.

Now, I know I would not feel guilty if my life had not taken this massive turn. I also know that Mums have to tell off their kids....they have to shout....it is what it is. But when I tell off mine, I literally feel in torture that I have wasted precious time and energy feeling cross. It is a hard one to deal with, my mind tells me one thing, and my heart another.

So on Thursday, unlike the other days I work, I did not skip off to the train station. Gabe's parting words "I don't like mummy", were just a bit too much and I felt pretty low. I walked to the train station (late for work I might add) in floods of tears. Thank God my best friend (Gabe's Aunty Franny) called when I was waiting for my train. She helped cheer me up, as did some of my lovely colleagues when I poured out my heart upon my arrival. Quite frankly, law had to wait, I had some crying to do.

Tears shed, the week started to pick up and turned out to be a really good one. Daddy went away for the weekend to catch up with an old friend, Gav, who he has not seen since Gav married Lara shortly after Gabriel was diagnosed. Daddy was meant to be the best man at that wedding but had to stand down for obvious reasons. To be honest, Daddy has not really had time out since this all began and bar looking a bit dodgy thanks to too many beers, he definitely looks refreshed. Meanwhile, Gabe, Little Sister and I spent the weekend playing in the garden and just hanging out together. We missed Daddy, but we still had fun.

Tomorrow I am taking Gabriel for his first check up with Amos since his last MRI. I had thought that I would be focusing our discussion on Gabriel's eating (which is amazing), but I think that I will be focusing on Gabe's hearing as recently he seems to not hear what I say. I am hoping this is just an age thing, but I want to get it checked out since I know that one of the chemotherapies that he had has damaging long term consequences to hearing. I will let you know how we get on.

Just before I sign off though, I wanted to say a big thank you to Ella (who I think is 8 or 9) for running the Race for Life today in honour of Gabriel. To have a young girl come up to me, her face full of pride, and tell me that she ran for my son, well, it meant so much. So thank you Ella, and to all the women out there who take part in the Race for Life in aid of Cancer Research.

Gabe's Mummy

Slowly coming down from Cloud 9

2010-06-02T21:04:00.013+01:00

Since our return from Eurodisney, we briefly settled into being home before heading to Nonna and Grumpsy's for the weekend. Aunty Toe and her crew were there too and Gabe, Little Sister and the girls were delighted to be in each others company again.

Gabe and his cousins shared the same bed, or "the Mr Men Bed" as they call it. On Saturday morning they all awoke at some unearthly hour. I could hear them chattering away to each other and it really did warm my heart and make me smile - that is, of course, until I heard the words "come on girls, lets wake up my mum and dad, they are heavy sleepers". I felt very tempted to bury my head under the duvet but instead, I got out of bed, and guided them all downstairs to the sofa bed where Nonna and Grumpsy were sleeping. Ha! Cunning or what? Gabe and the girls (now including Little Sister) merrily leapt into bed with Nonna and Grumpsy and I slipped back upstairs - undedected - in a place where nobody would look for me.....the Mr Men Bed. Perfect!

A couple of hours later and batteries fully recharged, I rejoined the troups. The weather was horrendous and so a trip to the swimming baths was arranged. Having lost my swimming costume at 'the swamp' - sorry swimming pool - on our caravan holiday (some might say on purpose) I was thrilled that I could sit this one out and watch from the sides.

So Aunty Toe, Uncle Paul, Daddy and Grumpsy took to their cossies, each with responsibility for a child. Little Sister's welfare was initially designated to Grumpsy but it was not long before Gabe had swapped and was merrily jumping into Grumpsy's waiting arms and putting his head well under water.

Following a night out at Col's 40th party, Daddy and I were a little hung over the following day but still managed church followed by a trip to the Martin Mere bird sanctuary to see the fledgling chicks, flamingos and many other species of birds. The kids loved it, and all up, a great weekend was had by all.

Gabe begged to stay at Nonna and Grumpsy's for "10 more nights" but alas, it was soon time to leave. Once home there was hardly any unpacking to be done because Daddy, the recently appointed packer, had packed for himself and the children, and lets just say, he packs light! Now, you may recall that I recently commended Daddy on his new found packing skills. Well, let me tell you, I TAKE IT ALL BACK. He had packed the most skimpy and unsuitable selection of 'tropical beach holiday' clothes for a wet and windy weekend break in England. Not one cardigan for either of them and only very short shorts for poor Little Sister. The only sensible item packed was their rain coats - which I packed! Needless to say, Daddy has been sacked!

All up, we had a great weekend. That said, I do feel like I am now coming down from cloud 9 where I have been residing for the last few weeks. I don't want to come down. I want to stay up there forever.

But reality is again starting to set in as we enter the next phase of our cycle. The further away we move from a clear scan, the more I have to start concentrating on ignoring the niggling scary thoughts that creep in the minute my guard is down. Gabriel is perfect, truly perfect. I want to look at him, smile at him, hold him and kiss him, without suddenly being struck with an horrendous thought. I want to look at Little Sister without constantly doubting that she is healthy and fearing for her future.

I guess I just have to accept that I am quite damaged by what childhood cancer has done to my family. Maybe one day those scary thoughts might stop or be less frequent? I don't know. I guess only time will tell.

Gabe's Mummy

Some photos

2010-05-26T07:12:00.005+01:00

The time of our lives!

2010-05-24T20:55:00.015+01:00

Well, guess who had a great time?

I think it is fair to say that we really have just experienced one of the best weekends of our lives. I was reduced to tears when Gabe, dressed as Buzz, went on the Buz Lazer ride (for the first of many times). I sobbed with joy and relief and even heard myself say the words "he is not meant to be here - just look at him". I must have just looked like any other happy and over emotional mum, for not once this weekend did we get that 'look of sympathy" that you tend to get when you have a sick child. Nope - we were pushed and shoved with the best of them by those anxious to get on rides before us.

Each morning, we started our day with breakfast with the 'stars'. The only person not particularly impressed was Little Sister who quite frankly was terrified of the characters including, 'the mouse'. She clung to me for most of the weekend, using her new found heart tugging phrases like "I need you", "Immy frightened", "Immy needs Babe (ie Gabe"). Don't get me wrong, she did have a good time, but she just did not 'get' the whole 'Disney' thing - you may just think she is 'too young', but I have always had a sneaking suspicion that she is more the yachts in Monaco sort of gal.

To see Gabriel's beaming smile just meant everything to us all. He enjoyed every moment, as did we all. This weekend, more than ever, I embraced the concept of "seizing the day", a way of living which was forced on me the day we heard those dreadful words 'brain tumour', but a way of living with which we are now totally adjusted.

I now feel pretty much how the kids look in this picture!

Gabe's Mummy

PS - more photos to come, just too tired to sort them out tonight.

A magical trip

2010-05-19T22:01:00.005+01:00

Something very special is about to happen in the land of the Davies 4 (and the land of Aunty Toe's crew)....

Tomorrow morning, we are all travelling to the magical world of Eurodisney. Gabe and the girls are tremendously excited, albeit the lovely Little Sister is probably a bit too young and is slightly bemused as to why I keep dressing her up in Disney Princess outfits.

I have told Gabe that we are getting a 'special train' under the sea to a 'magical world' where Mickey Mouse and Buzz Lightyear lives. Gabe, as always, had a couple of questions.

The conversation went like this:

"Mummy, do the Power Rangers live there?"

"Not sure. Probably, but they may be away on one of their missions. Mickey and Buzz live there though."

"Really. Mummy, but do their mouths move when they talk?"

Mmmm, I had not seen this one coming - clearly I had skipped over the fact that Gabe had noticed the "Show Time" characters at our recent caravan holiday had talked without moving their mouths.

"I don't know, but they are real!" I lied. Oh eck, never mind, hopefully he will be in such awe of his surroundings that he won't 'nit pick'... but let's face it...knowing our boy, this is somewhat unlikely.

Apart from the obvious reason as to why the Davies 4 are residing up on cloud 9, I am particularly excited about this trip! Having 'roughed it' on our recent caravan holiday, rumour has it, the flash Disney hotel that we have booked serves up a pretty mean cocktail. Wahey!

Now, those of you who are wondering how I can flip so easily from one extreme holiday accommodation to the other, the answer is quite simple....book a holiday with Aunty Toe!

Let me explain. Aunty Toe and I had been planning to arrange this Disney trip if Gabe was strong enough, and moreover, well enough, to really enjoy himself. I had also planned to do it on a bit of a 'budget', given that following Gabe's diagnosis, I no longer work full time. So possibly it was not the best idea to book this trip after several belinis at Aunty Em's house last time we visited. Having perused the available accommodation on the internet, Aunty Toe piped up "ohhh - what's that lovely pink castle, let's just have a sneaky look - just to see what it's like". So we did....and then we booked it. Aunty Toe, Belini, and credit card in hand = lethal combination - but fabulous luxurious weekend of fun HERE WE COME!

Something happened yesterday that reminded me why I will never ever forget or underestimate, even for one split second, just how lucky we are to be taking this trip, together as a healthy family. I was working at my desk in London (very diligently, I might say, if any fellow colleagues are reading) when my mobile phone rang. I answered it. It was a lady called Zoe from 'Make a Wish' charity.

We first spoke in the really dark days post Gabriel's diagnosis when we we were told he had months to live, and a friend of ours had contacted the charity to arrange a wish for Gabriel. At the time, we were too grief stricken to really think about it. Our boy was just 2 years old and the only wish we had was the wish of time. Zoe and I have spoken several times since those early days and each time, for one reason or another, the moment has not been quite right to arrange a wish.

So she called me today. Sitting in my office, in the middle of the city of London, surrounded by busy focused lawyers, I suddenly found myself lost and absorbed in the difficult journey that we have just travelled that has pretty much changed my life forever.

I thanked Zoe but told her that Daddy and I had recently spoken about whether or not we would take up the opportunity to arrange a wish for Gabriel. As ever, we agreed and the decision was that we would not. The reason? Well that is quite simple. As a family, we have our wish, our dream. We have Gabriel and he is well, and he is happy. And because he is going to stay that way, I told Zoe that I felt it would be tempting fate to take her number or even arrange a call in the future. She whole heartedly agreed and we laughed as she told me she would not now give it to me even if I begged her.

Gabe's Mummy

Still on cloud 9 and revelling in normality

2010-05-17T08:44:00.006+01:00

I never thought that I would rejoice so much in normality. We don't talk about cancer all the time, indeed, days can pass without us even mentioning it, although we constantly compare and contrast the Gabe of today with the sick little boy he was 2 years ago, and the recovering little boy he was last year. Our little man really does just go from strength to strength.

This week has just been great. Been to work - tick, children been to nursery - tick, chatted like normal with neighbours in the road without talking about cancer - tick, been woken up early each day by boisterous healthy children - tick, oh yes, and done lots and lots of gardening with my little assistant, Gabe - tick.

The whole week was topped off with the joy of a last minute arrangement of a visit from Nonna and Grumpsy who were suffering from withdrawal symptoms having not seen the "the children" for the last few weeks (note, by that they do not mean their own child i.e, me. Nope - this sentiment is entirely reserved for their much adored Gabe and Little Sister). Of course, not only is it great to see Nonna and Grumpsy, but within 5 minutes of them telling me they were coming to visit, I had arranged a hair appointment for myself, and Daddy a nice long bike ride for himself - not that we are keen to capitalise on a bit of free time or anything.

Never, for one moment though, will I ever take for granted the gift of normality. Once I wrote a blog called "Spring Bulbs". I was terrified that Gabe would not live to see them grow. He has now seen those bulbs grow and bloom twice. This weekend, we focused on summer bedding plants and hanging baskets. Now, don't get me wrong, I am no gardener, but as with most of the things I do, what I lack in skill, I make up for in enthusiasm. Anyway, like any good leader, I recognise the skill of my assistant - just look at him!

Gabe's Mummy

We are back!

2010-05-08T19:55:00.006+01:00

After a truly fab holiday in Pagham, courtesy of the children's cancer charity, Clic Sargent, the Davies 4 have arrived back home to our headquarters. We had planned to be back by lunchtime, but that was somewhat delayed by a mishap - I will tell you all about that later in this post.

But first to the holiday.

We set off last Saturday and after 5 minutes, we heard a little voice say "are we there yet?". Gosh, I cannot count how many times we were asked that question, with Little Sister joining in for good measure.

We arrived in the afternoon and immediately made ourselves at home. Gabe was desperate to get to the 'club house' and see if the 'spider stomping machine' was still there. Oh joy of joys - it was. This proved to be not only (i) the biggest cash drain of the holiday (bar my new found love of Rose wine), (ii) the best 'threat' ever to Gabe with his eating "if you don't eat your tea you won't have any energy to spider stomp," but it was also an activity that really enabled Daddy and I to see just how far Gabe has developed since last year.

This time last year, in order to spider stomp, either Daddy or I had to take Gabe's entire weight as he moved his legs between the flashing lights, standing on them to turn them out. Not so this year. Our little man leapt around like he had ants in his pants, with no help from either parent, but plenty of hindrance from Little Sister who, no longer confined to her buggy this year, kept stepping on to the lights in her attempt to help.

We also were able to spend time in the swimming pook which this time last year was strictly forbidden due to the presence of Mr Wiggly (Gabe's Hickman line). We skipped along to the pool the following morning and watched as Gabe and Little Sister leapt around in excitement. I did my best to look equally excited, but if the truth be known, I am a total swimming pool snob.

Now don't get me wrong. It is not that I loathe swimming. Indeed, I happily splash around in the luxurious private pool at Fordfield House, but place me in a public swimming pool, I almost shudder in horror and am constantly scanning the water around me to check that nothing suspicious floats by. I am, of course, slightly obsessed with hygeine following Gabriel's cancer treatment, but if I am honest, my swimming pool snobbery stretches way back into the dark distant past when once, holidaying with Nonna, Grumpsy and Aunty Toe, Aunty Toe and I were enjoying a youthful swim in a public pool in France, when lo and behold, a poo floated past which required an immediate evacuation of the pool. Trust me, I have never moved so fast and I am quite the damaged swimmer ever since.

I desperately tried to put such memories behind me, but I could not hide my horror when I watched my precious boy accidentaly gulp a large mouthful of water. UGH - I sheaked "did you swollow the water?", to which a very proud little boy repled "yes". Double UGH. Daddy looked equally horrified. Meanwhile, Little Sister was rolling around on the steps next to grown mens dirty looking feet. It was all too much for me. I honestly felt like I was bathing in a swamp with the 'great unwashed' which quickly led to the pool being labled, 'the Swamp'.

When we were not bathing in the Swamp, or stomping spiders, we spent lots of time on bike rides and playing crazy golf. We also went to the evening show each and every night, and I am proud to say both Gabe and Little Sister danced away with the other children. Gabe even won a few prizes, including family bingo! We stayed up late every night and just had fun fun fun.

All too quickly, our lovely week was over. True to form, rather than being sensible and packing last night, we opted to go to the show, drink wine, and leave the packing until this morning.....and there it all went wrong.

Having sent Daddy, Gabe and Little Sister for one last spider stomp, I took on the challenge of packing in an hour. I did pretty well, if I may say so, and was all packed and ready to go in accordance with our 10 am departure deadline. All that was needed was for Daddy to unlock the bikes that were securely chained to the fence attached to the caravan.

Simple enough..... unless of course, you cannot find the key to my bike lock.

Now, I am not going to waste any time debating to whom fault for this recent incident should be attributed, but for the record, I will quickly just say that responsibility for locking and unlocking the bikes has ALWAYS been Daddy's. Indeed, I have never even seen the key to my bike lock and would not know where it is stored. But as I say, rather than debate this point, we will just pretend, for one moment, that Daddy and I are prepared to share the blame for this event.

After unpacking the car again, going through all of the pockets of clothes in the dirty laundry, it was clear that this little key was nowhere to be found. By now the cleaner had turned up and politely asked if she could start cleaning given the next guests were due to arrive in the next hour or so. In cleaning the caravan, she turned it upside down and confirmed that little key was nowhere to be fond. "There is nothing else for it," I said, "we will have to buy some of those big things that you cut through bike chains with. Where do you buy one of those from?" I helpfully suggested to Daddy.

"Burglars have those 'things'", Daddy replied, threw gritted teeth. It was at about this point that I realised the key loss was being attributed to my efficient packing.

I decided to sneak off to the complex reception to see if they could help. The staff looked at me like I was the village idiot and made a few 'calls' to their 'maintenance men' to see if they had 'chain cutters'. The conversations roughly went like this....

"Hi, it is Cindy from Holiday Haven. I am with this lady and she has locked her bike to the caravan and has lost the key" pause for response from said maintenance man, followed by "yeah, I know, ha ha ha, can you believe it, do you have anything to cut it off like chain cutters?" pause for response "no, OK, I will try Bill / Bob /Sid".

Several further calls followed, all pretty much the same in which I was portrayed as this silly little fool who had lost the key. At this point I wanted to screech "I have never even locked up my bike so how could I have lost it - ha!" but quickly recognised that this would not win me any favours and would only serve to make me look reliant on my husband for everything. So I opted to stay nothing, and play up to the role of village idiot - which rather worryingly, came a little easily.

Bill /Bob / Sid and the other maintenance men, all having had a good laugh at my expense but being unable to help, meant that we were back to square one... all packed without my lovely pink bike. I started to feel like Daddy was about to abandon it and momentarily considered chaining myself to it, suffragette style. When I returned to the car, we quickly came to the decision that we would purchase the very equipment "that only burglars have" which Daddy had by this point decided could be purchased from B&Q. So we headed off in search of such a shop, which we found, and hacksaw in hand, we returned to free my much loved pink bike. We were finally on our way some 3 hours late, a little fed up, but not prepared to let anything, ruin our trip. Indeed, we have learnt a new skill from all of this and could now set up our own little enterprise hacking bicycles off lamp posts around town. Watch out!

We really have had a wonderful week. But as with anything, once you have entered the world of childhood cancer, it is all too often we are hearing worrying news. Little Camille is still in intensive care. She needs lots and lots of prayers and positive energy.

Gabriel's Mummy

Update on Gavin

2010-05-07T07:57:00.002+01:00

Gavin's scan was clear which is truly amazing given the symptoms his Mum reported. The oncologist was very worried too. Thanks for your prayers, they clearly were heard!

Aunty Toe

Prayers for Gavin Smith

2010-05-06T18:06:00.002+01:00

Christine (Mummy) has asked me to post this blog for her as the Davies 4 are currently on holiday and have limited internet access.

Another AT/RT warrior is currently having worrying symptoms, having been tumour free for quite some time. He is having an MRI scan later today to investigate this. Gavin lives in Texas and his parents have asked that anyone who hears of him prays for him today. They have the most amazing faith in God and frequently pray for many other children, including Gabe.

You can follow Gavin's progress by clicking on "Gavin Smith" on the left hand side of this page.

Aunty Toe

Peaks and troughs

2010-05-04T18:38:00.002+01:00

To be honest, I am still stuck up somewhere on cloud 9.

I feel like I have just been handed a golden ticket to the Chocolate Factory, but instead of spending the day with Willy Wonker, I get to feel more confident about Gabriel's future.

I feel I owe it to the "regulars" who are following Gabriel's story to share with you last Monday's events. Bear with me though, it ranks up there in my top 5 most difficult days yet.

By way of background, I have always been a pretty good sleeper. For some reason, since Gabriel was diagnosed, I have still managed to sleep well. I go to bed, I close my eyes, and I sleep. I am awoken constantly for one reason or another, taking Gabe for a wee, helping Little Sister find her 'num num' (her much loved dummy), getting a glass of milk for Gabe - you name it, some nights I am up 6 or 7 times. But much to the envy of Daddy, who does not share this heaven sent gift, I always manage to drift straight back to sleep, sometimes even managing to have a pleasant dream or two.

Possibly because of this, I am a morning person. Most days, I skip out of bed with a spring in my step ready to take on the world. Come 9pm though, I am quite a changed person and am normally already in my pj's, settling down for much needed sleep. Rock and roll it is not, but give me a few Pinots and I can put on a good show of being a night owl, until 11pm that is.

So on Monday morning, I woke up feeling great....but then that sinking feeling flooded my veins - I had flash backs to the morning of my French A-level all those years ago when, so scared of failure, I contemplated tripping over to fein a broken leg - anything to avoid that exam!

Entirely aware as to just how monumental that day was, the Davies 4 set off to Addenbrooke's about an hour earlier than normally required. Gabriel was very excited - desperate to show Amos just how well he has been doing with his eating. Little Sister did not share this sentiment. She too is normally an early bird, but on this day I had to wake her.

The traffic was so bad the normal one hour journey stretched to two. This meant one thing - Gabe needed a wee stop. Gabe never gives you much notice of his bodily requirements. He tends to gently say "mummy, I need a wee" which seconds later is followed by "quick, I'm desperate, I cannot wait a second more".

There was nothing for it but to comply with this urge so I told Daddy to pull over. This was not hard to do - we were on a back lane stuck in a traffic jam. So I stood with Gabe as he attempted to wee infront of what seemed like a hundred of cars- and as the traffic crawled along, Gabe's little bottom was exposed to the morning rush hour which whilst, from his point of view, was hilarious, it also put him off the actual job in hand.

Having informed me he no longer needed to go, I yanked up his 'Power Ranger Jungle Fury' undies and chased after the car, which having breathlessly caught up, Gabe announced that the wee urge had returned so, once again, he gave the morning commuters a glimpse of his nether regions as once again he tried, and failed to wee. In the end a very giggly Gabe admitted defeat and once again we were on our way.

We arrived at the Day Unit and Gabe promptly had a cannular inserted. To say he was cross about this is the understatement of the year. His cry was so loud and he shouted at the nurse "that was not a very nice thing to do to me".

The wind having firmly been taken from his sails by this point, he cuddled into Daddy and suddenly looked very tiny, and also quite frail... and there started the first of my several crying episodes of the day. All I could see was the little boy that he was 2 years ago. Mop of dark hair, skinny, and about to be told that he had cancer. I thought that our fate was sealed and could almost hear the words that I dread the most ringing in my head.

As predicted, Gabe's scan took about an hour. Daddy stayed with him and I took Little Sister to the play room. It was a hard wait. Little Sister happily busied herself with the dolls house. I sat with her, 'there' physically but mentally struggling to focus. I could hear children screaming in pain as horrid procedures were being done to them. I could hear mothers talking about the last time their children were in intensive care, like it was a session of tumble tots. I felt like a stranger who did not belong. I felt like I was at the beginning of our journey, not nearly 2 years in. I felt shocked that other mothers were talking so, well normally and matter of fact about what is every parents worst nightmare - yet I know I have done exactly the same.

In short I felt like I was breaking down. So I cried again.

Amos came up to me. Have I mentioned we adore Amos? Notwithstanding the fact that he saved Gabriel's life, he is the most gentle and kind man. I think he could see that I was in a pretty bad way and he told me that they would be getting Gabriel's scan to the 'Gold Standard Meeting' that afternoon. If it was at all possible to feel any worse, at that point it suddenly happened. I knew that by the end of the day, I would have been given the information as to whether or not our world would keep turning. To make it clear, any relapse for Gabriel, as we currently understand it, would mean the end of the road, and that is a thought too horrendous to dwell on a moment longer.

Once Gabriel had come round from his sedation, we decided to occupy ourselves with a trip to the park and a walk. We must have looked like any normal family. We passed lots of other families and I did question whether being so close to Addenbrooke's, they too were busying themselves while they waited to hear whether or not their world would end.

And then my phone rang. An unknown number. I answered it trying to sound like I wasn't about to jump off a cliff, but in reality wishing there was one close by. "Hello, it's Amos, the scan is clear" are the words that greeted me. I screeched back "is it pristine, is it pristine Amos?", to which he responded "yes, totally pristine". It was all that I could do not to drop to my knees. My body started to shake and I sobbed, pretty much uncontrollably. I just cannot describe the relief - it was almost like I was sitting on death row waiting to be electrocuted, and there had been a power cut. The journey of peaks and troughs that is thrown on you with cancer is so unwelcome. The highs are as wonderful as the lows are horrid.

When we arrived back at the day unit, it was fair to say that there was an excited atmosphere. One of our oncologists, James, looked giddy and took me by the shoulders and said "Aggressive tumours come back fast. This has been a year since stem cell transplant. We are not out of the woods but he is doing brilliantly". Those words keep ringing in my head. For the first time ever, I feel that the Team are prepared to take a small punt on our little Gabe having a good long future.

So to today, we are still fortunate to be riding high. Gabe is going from strength to strength. We are on holiday this week in a caravan in Pagham (courtesy of the childhood cancer charity ClicSargent). Gabe and Little Sister are having the best time ever, as are we. Hawaii it is not - and the weather is, well, a little wet at times, but we really don't care. We have the news that means everything to us, NED.

So thank you to each and everyone of you who care so much about our boy. Your prayers and positive thoughts mean everything to the Davies 4. We are in a good place and we know it. But no matter how good that feels, I was very saddened to be told today that, little Camille, another brain tumour child from Addenbrooke's, is tonight in intensive care and is seriously ill. Please think of her and her family tonight and pray that she has the strength to fight.

Gabe's Mummy

NED!!!!!!!!!!!!!

2010-04-26T17:07:00.001+01:00

We got the result we need!

No Evidence of Disease.

We are on top of the world and exhausted with emotion.

Thank you for your prayers, in particular to Diana, I wore your cross today.

Gabe's Mummy

Pre-scan nerves

2010-04-25T19:50:00.003+01:00

The Davies 4 have had a fun packed and busy weekend and we are exhausted.

I keep feeling really normal, and then all of a sudden I get that sick nervous feeling. I know we cannot put off tomorrow's scan, and every second that ticks by takes me closer to knowing whether or not we get the only news that allows our world to keep turning - the all important NED ("no evidence of disease"). NOTHING in the world matters to us but a clean scan.

For the first time we have to be a bit more honest with Gabriel about the scan. In the past, he had a central line so we did not have to worry about him being put to sleep. Tomorrow he will have a canular - which he loathes. Previously, we have turned his overnight feed off at midnight and have not had to worry about explaining why he could not eat pre-scan. Tonight, I have already had to explain that he won't be having breakfast in the morning.

The scan tomorrow is at 9.30am and takes over an hour because the entirity of his brain and spine is scanned in stages. Our start is a very early one and I am anxiously packing for Gabe and Little Sister making sure I have all that I need for them - I am very distracted though. I feel like I am about to sit an A-Level in maths, but cannot find my scientific calculator.

I can't talk about it either. Talking about it makes it all the more real and closer. I feel that I am clinging to the last few hours of pre-scan freedom. The wait between having a scan and the result is unbearable. It makes me feel like I am in limbo and I cannot think about anything but the result. The gold standard meeting is tomorrow afternoon and my understanding is that the Team are going to try and look at his results in time for the meeting so that we know the result conclusively tomorrow. If that does not happen, we will not have the formal results for 2 weeks.

So tonight, I am scared, very very scared. I love this child with every ounce of my heart and soul. He is more important to me than the air that I breath. We must have a NED scan - there is simply no other option.

Gabe's Mummy

MRI on Monday

2010-04-23T10:30:00.003+01:00

Man, those scans just come around too quick (note my hip youthful way with words thanks to my young son's power ranger obsesssion). If it was not hanging over our heads, life would be - well - perfect.

So, in keeping with every other scan, I have crammed our "pre-scan weekend" diary with activities and the Davies 4 won't be pausing for breath - busy, happy minds. We have a party to attend, a family swim at the fab pool at Fordfield House Nursery, and a visit from Aunty Toe and her crew.

But for today, I am heading to work and Gabe and Little Sister are spending the day with Daddy. I am regretting the wine I consumed at dinner with my friends last night (entirely disregarding the fact that I had swopped my working days this week to accommodate a couple of meetings). Drat - work with a hang over - not always the best combination but surely easier than looking after Black Ranger and Baby Ranger?

Gabe's Mummy

Thinking of another family tonight

2010-04-20T20:20:00.003+01:00

Tonight, on my commute home from London, I opened my free copy of the Evening Standard. The news was the same as the last few days - election campaigns and of course, the volcanic ash over our country that has suspended all in and outbound flights.

I have heard many people talking about the "nightmare" that is the inability to catch a flight. Meetings missed, holidays missed, none of which I have especially felt any sympathy for. I just kept thinking, "oh well, it's not the end of the world". But then an article made me catch my breath.

Tonight, in a London hospital, lies a young girl. She has cancer and is in isolation. Her immune system has been wiped out ready for her life saving stem cell transplant. But there is a big problem. Her donor, the only matching donor registered in the world, is in Canada.

When I think back to the stresses and worries that we faced when Gabriel had his stem cell transplant, not for one moment did we have to worry about whether or not the wind would change to blow volcanic ash away from our skies just to allow the transplant to take place, to give my child a chance of living.

So that is my prayer tonight, that somehow logistics can enable this child to have a chance to fight for her life.

Gabriel's Mummy

We have played, we have partied, we have celebrated...

2010-04-18T20:32:00.008+01:00

So our boy turned 4 and no amount of effort will enable me to put into words just what that feels like. But I will try.

I am ecstatic with joy that he is now the age that I can first properly remember being. I watch in true wonder how he has developed into this wonderful, handsome, funny and intelligent little boy. It was only this time last year that he had absolutely no hair, not even a single eyelash, and could hardly walk. Yet today, I watched him charge around the road with his mop of dark hair, armed with a lightsaber.

This morning, he woke me up at some ridiculous early hour - "Mummy," he said "is the island that we live on called Mars?" - and there my day started, explaining the solar system to an enthusiastic and eager to learn little boy. What a difference to the pale, skinny child that used to wake up groaning and crying in pain - every single day - he must have felt awful and had no idea why.

But the biggest feeling that I have, mixed up with the pride, relief and joy at his wellbeing, is pure, raw fear at the "what ifs". I try and push it away, but it is there, all the time, creeping into my thoughts if I momentarily let my guard down.

I found myself talking to a mother of a child due to start school with Gabe in September. I was merrily chatting away until all of a sudden I felt my mind slam the breaks on. What on earth was I thinking? It felt like I was almost tempting fate by taking for granted that he will be starting school in September, happy, healthy and above all, cancer free. For a moment I forgot that he has two scheduled MRI's to get through prior to then, the first being a week tomorrow, far too close for comfort.

I also feel tired. Very, very tired. Keeping busy to prevent a wandering mind is hard work. I have not stopped since his birthday celebrations began. To be honest, it is better to feel tired and busy with a distracted mind than allowing fear to take over. I am forcing myself to focus on how well he looks rather than panicking about the fact that he told me yesterday that his neck hurt, or that his gum hurt the day before, and not to mention his toe and sore knee this morning.

So that is where we are today. This coming week will be a busy one, trying to prevent my wandering mind. But no matter how hard I try, I know that no amount of effort will truly distract me from his looming scan because quite frankly, nothing in the world matters to the Davies 4 but Gabe's scan being clear.

Gabe's Mummy

Our boy is 4! (and here is the cake)

2010-04-11T20:55:00.003+01:00

A million emotions

2010-04-10T22:28:00.007+01:00

Tonight, the eve of Gabriel's 4th birthday, I am full of too many emotions.

I cannot stop my mind flashing back to the 10th April 2006.

I knew that the baby who was about to be born would change my life. I knew that I would love the baby, unconditionally. I knew that I would have sleepless nights and far less money. I knew that my career would be set back, and of course I knew my social life would be curbed... severely.

I knew it all.

But I had no idea how much you could love another person. I knew what love felt like... I love Daddy...I love Nonna and Grumpsy ....I love my sister, Aunty Toe. Nothing compared to the love that I immediately felt for the baby that was born to me in the early hours of 11th April 2006. From the moment I looked at him, I understood that my entire life had been spent waiting for him and that he would change everything... I just did not appreciate to what extent.

I can remember cuddling him in the hospital bed. A nurse came in the room and said "you're making a rod for your back, cuddling him all the time". I responded "he won't want to know me when he's 18, so I'll get as many cuddles in before then as I can," (secretly thinking "back off, you miserable witch").

So I ignored her, Gabriel and I cuddled on, and on, and on. I don't regret a single cuddle. I don't regret the trains that I have missed trying to get to work because either Gabe or Little Sister have needed an extra cuddle. I don't regret one single moment of expressing my love for them.

Today was a lovely day. It was great in fact. Little Girl Cousin's 3rd birthday party was fab. We spent the day with family and friends. Gabe and Little Sister partied hard and are now fast asleep, exhausted. I had a great time too, catching up with friends that I have not seen for a long time, far too long really.

But I cannot shake a certain feeling, and that feeling fills me with shame. If I am perfectly honest, I am jealous. Completely and utterly jealous.

I want to be able to celebrate Gabriel's birthday without feeling massive, huge relief that I have him with me today....I want to be able to take that for granted. I want to be able to think - "well, this year we will be low key, wild perhaps next year", without knowing we are already the statistic that should not be.

I want to not have to question whether or not he will be able to start school in September, healthy and happy. I want to take Gabriel's future health for granted and know that he is with me forever, until the day that I die - the way that it should be. I want that so much that sometimes it hurts an awful lot and I feel jealous of parents of healthy children. I want the innocence back that I lost the day that I was told he had cancer. I live in fear that every celebration will be our last and I do not know how to control that emotion.

I also know that I am one of the lucky ones. Whilst friends of healthy children fear walking in my shoes, I understand that other parents will be feeling a different sort of jealousy about me tonight. For my Gabriel is still here, thriving, amazing....I just wish I could gaze into a crystal ball and see that his life before him is a long one, a happy and healthy one.

Gabe's Mummy

PS

Those of you who watch Milkshake on Channel 5, Gabriel's birthday card should be shown about the same time that Noddy is shown. Those of you who don't, enjoy your Sunday morning sleep!

A hard days night

2010-04-09T22:01:00.004+01:00

After several hours of cake crafting, a take away pizza and a few bottles of wine, the Power Ranger Cake is complete. I am not one to blow my own trumpet, but might I say, Red Ranger cake is VERY IMPRESSIVE. Once Chloe, Tina and I retired to bed in the early hours of the morning, the rest of my night was spent dreaming about cake decorating (and cuddling a teething Little Sister to keep her asleep).

By morning I was too excited to hide the cake so I made the snap decision to let Gabe and Little Sister view the spectacular creation.

So I led them down the stairs.....

"Mummy and her friends have made you the best ever birthday cake," I told Gabe.

"Really? Wowee. Is it a Ben 10 cake?" Gabe replied.

The wind was slightly taken out of my sails at this point.

"Of course not, it is your favourite thing, a Power Ranger cake", I reminded him.

"Yay, I love Power Rangers. Is it a Yellow Ranger cake?"

"Mmmm - urm, no, it is a Red Ranger cake, but you love him," I replied.

So far, this conversation was not going at all to plan.

"Is it Red Ranger from Space Patrol Delta or Dino Thunder?"

Now, having never managed to concentrate on an entire episode of Power Rangers, I confess to a certain lack of knowledge in this field. I know I have picked up the Power Ranger lingo - from time to time I have even found myself saying "awesome dude" (which possibly ought not to be in the dialogue of a 30 something English girl) - but the actual differences between Red Rangers was well beyond me. Time to pull rank...

"Mummy and her friends have worked very hard on Red Ranger cake and if you don't like it I am sure there is another little boy who will", I found myself snapping as I opened the box.

"I love it" Gabe squealed, and gave me one of his most charming smiles, "please can I have a slice?" Until now, Little Sister had remained silent - she soon found her voice and started shouting "cake, cake, cake" and gave our beautiful creation a great big poke. When she realised Weetabix and NOT Red Ranger cake was on the breakfast menu, there followed a fair amount of crying - so I caved in and gave her one of my precious twelve cup cakes. She picked the carefully crafted icing off before casting the rest of the cake to one side.

I will save unveiling the cake to you until his birthday on Sunday. Tomorrow is Little Girl Cousin's Third Birthday party (Aunty Toe made a very sensible decision and has ordered Little Girl Cousin's cake from a pro.... not me in case you were wondering!)

Gabe's Mummy

Let the creation begin

2010-04-08T09:20:00.014+01:00

I really am ridiculously excited. I cannot contain it. I skipped into work this morning and had to stop myself from grabbing random strangers so as to spread the word that my wonderful little boy, the one that they said would not live to be 3, will be 4 on Sunday! Who cares about the General Election? This is all that matters. I kept smiling to myself and having the odd little giggle and from the looks I seemed to be getting from my fellow commuters, they clearly thought I was drunk... or perhaps a little bit demented.

Drunk I am most definitely not, demented - well that is arguable, but one thing I know for sure is that I am exhausted. For last night, after Gabe and Little Sister were asleep, I started my mission.... stage one of Gabe's Power Ranger Birthday cake.

Those of you who follow this blog will know that at the beginning of Gabe's treatment, my baking skills were limited to Dennis the Menace cup cakes (courtesy of a pre-prepared box from the supermarket). As the chemotherapy battered Gabe's immune system, I was determined that it would not batter his spirits too and so we looked for indoor entertainment in whatever way we could find -and one such activity was baking. So while other healthy children played with each other outside, Gabe and I played, did art, and lots and lots of baking.

Now don't get me wrong, I am not saying I am much improved, but I now try harder and am very enthusiastic. My neighbours have had one too many of our creations left on their doorsteps (the dodgier ones I pass off as just Gabe's) and as the smell of baking wafts from the Davies 4 headquarters, neighbours curtains are yanked tightly closed and cover is taken behind the sofas. But no such hint will stop me! So last night, my baking bonanza began. I baked and I baked and I baked...I am quite surprised that after cracking ten large eggs I only have 12 cup cakes and one 9 inch cake to show for it - but lets not number crunch.

Tonight is icing night, when my rather lumpy 9 inch cake will be transformed into a Red Ranger birthday cake. Those of you who doubt my ability - fear not - I doubt it too - so I have enlisted the help of two of my good friends from work, one of whom (Chloe) is the fabbest cake decorator ever. So when I unveil Gabe's Power Ranger cake at the weekend, it will be a combined effort of love (mine) and skill (Chloe's). And that is without mentioning the cost of producing this beauty - I have watched Daddy's eyes roll again and again as I have brought home "another essential piece of equipment for Gabe's cake". Believe me, it would have been far easier and cheaper to commission a cake from the Power Rangers themselves.

So tonight is the night. I am so excited I could head home now and whip on my pinny (but for the fact I would obviously get into a lot of trouble with my boss if I did that). So my head is down, on with the work... and the Power Ranger creation will have to wait until tonight.

Gabe's Mummy

Attention be mine

2010-04-07T11:31:00.002+01:00

Gabe really made me laugh this morning.

As normal, I was first up and creeped downstairs in the hope that I could have a strong cup of coffee and a slice of toast before anyone else joined me. Gabe was next, pattering down the stairs and giving me one of his lovely, lovely cuddles. Daddy followed, not quite as enthusiastic as his young son about the bright and early start of another day. And Little Sister....rather bizarrely, she slept on, clearly tired from her weekly Tuesday swim in the "big bath" (as she calls any expanse of water, including the sea).

Gabe was delighted by this. "Great" he said. "I get ALL of the attention".

Unfortunately, for Gabe, she woke up half an hour later with her beautiful beaming toothy smile on full show. "Hi babe" she boomed (still struggling with those G's) and gave him a much unwanted and very persistent cuddle. After unsuccessfully trying to brush her off, he succumbed to her love and reciprocated.

Gabe's Mummy

Perfect weekend

2010-04-06T10:09:00.007+01:00

The only way I can describe our Easter weekend is PERFECT. I found myself saying this to Daddy and asked him whether or not he agreed. He did. I then asked him if we would have thought that it was perfect had childhood cancer not struck our lives, and we agreed that we probably would not have, we probably would have taken for granted what we now relish, being a happy family of 4 with two young, healthy and happy young children.

After a long day at work in London (including a rather delicious client lunch with a couple of glasses of wine) I headed home to a very organised household. Having also worked all day, Daddy had managed to successfully pack Gabe and Little Sister's clothes for our weekend trip to Nain and Taid's in North Wales. All I had to do was pack my clothes and we were ready to hit the road. I packed as quickly as possible, perhaps I should have taken more time as I managed to pack the most unfashionable, unmatching outfits I could gather. Gabe and Little Sister, on the other hand, had the benefit of Daddy packing (who is one of a rare breed of fathers who actually dresses his children really well). It is normally my job to pack for the children and without fail I always forget important items, normally socks and Little Sister's nappies. This weekend, Gabe and Little Sister were well dressed, fully clothed and warm. Recognising Daddy's strength in this field, I have passed this role over to him for future journeys.

Our drive was pretty horrendous (especially for Daddy who was driving). It was dark, pouring with rain, and the roads were busy. All up, the journey took nearly 5 hours. I was busily boasting to Daddy about how good Gabe and Little Sister were sleeping the whole way, when Little Sister decided to wake up. She roared the last half hour of the journey, woke up Gabe, and then continued her crying for an hour and a half after we arrived. I shared a bed with her and managed to finally get her to sleep at about 2am. What seemed like 5 minutes later, but was in fact 6.15am, she hit me on the head, gave me a toothy smile and bellowed "Hello mummy"....and there started our day.

Gabe loves being in Wales (especially playing with his cousins Cari and Caim). We spent lots of time on the beach. It was cold and sunny, but very refreshing, just perfect. To me nothing can compare with the clean, pure air of the Snowdonia region (although I accept I have never been to the Caribbean ha ha).

Gabe also ate lots and is now progressing so well that he is served exactly the same meal as everyone else at mealtimes. He knows he has to eat a designated amount, and he does. It takes time, he needs lots of encouragement, but he is very determined. He really does make us proud.

We returned home on Sunday night so that we could enjoy the bank holiday Monday, relax and get organised for the week ahead which is a busy one. I am the happiest person alive, for this coming weekend (Sunday 11 April) is Gabriel's 4th birthday.

This time last year, it was beyond my wildest dreams that he was going to celebrate his 3rd birthday. This last year he has gone from strength to strength and is a happy, healthy and very fun (and not forgetting extremely bossy) little boy. For that, I am eternally grateful.

Gabe's Mummy

The "Weigh In"

2010-04-01T15:37:00.008+01:00

Daddy and I took Gabriel for his "weigh in" earlier this week - 3 1/2 weeks after Mr Pipey Pipey was pulled out in an accident whilst playing hide and seek. Gabe was very excited about showing Amos how big he has grown, so it was with a little disappointment that we found out that he has actually lost some weight. Not much, but some. We did not share this information with Gabe - instead we told him that everyone is really proud of how much he has grown, but that Amos and his friends want him to eat even more so he can grow even bigger.

Carla, Gabe's dietician, was delighted by Gabe's determination with his eating and said that he is doing incredibly well for a child who literally ate nothing, and is now eating three small meals a day, with lots of snacks in between. Gabriel weights 13.3 kilos. Carla said that if he drops below 13 kilos then we may see a return of Mr Pipey. Together, we are determined that this just will not happen.

We have tackled the entire eating experience with "positive parenting". Rather than focusing on anything negative, we are constantly telling him that he is a great eater. We also talk about him (pretending we don't know he can hear us) and comment on how wonderful he is with his food. He is starting to believe this himself.

We keep making a big fuss over him when he eats well, and do the same with Little Sister (so she does not feel left out). Gabe is very proud of himself, and we, in return are proud of him. He take ages to chew and to swollow, and has to have his meal reheated on several occasions.

He has enjoyed new flavours and even dared to eat 10 spoons of my revolting home made carrot and white bean soup. I led by example and ate all of my bowl, commenting through gritted teeth on how delicious it was, whilst secretly vowing never to make it again. Daddy looked somewhat bemused by my enthusiasm, however, having peeled what felt like 1000 carrots, there was no way it was not going to be eaten.

The Davies 4 are off to Nain and Taid's in North Wales for Easter weekend. I love going and know that Nain, who is an excellent cook, will have Gabe's eating progress at the forefront of his mind. Gabe's cousin, Cari, who he worships, is a great eater so I plan to be praising her lots and hope that Gabe will follow her lead.

Gabe's Mummy

Gabe's Mummy

Party animals

2010-03-28T19:15:00.006+01:00

This week has been incredibly busy, in some ways stressful, but for the best part, a really good one.

Daddy had his operation on Monday and came home on Tuesday afternoon and is now recovering well. We decided that we wanted to tackle this latest medical event in the Davies 4 househould without, once again, relying on our families and neighbours, who surely must have by now labelled us "the needy Davies 4".

Well not this time, we decided. No - not us! We can cope. I lay awake at night contemplating how I was going to manage getting Gabe and Little Sister ready for nursery, drop them off, get to the train station, get into London, put in a full days work including a client event on Thursday night, commute back, pick them up, bath them, and put them to bed. After several nights of feeling anxious about the challenge, and having faced that from a timing point of view, dropping them off and collecting them, and working a full day in London, was just impossible, a moments brilliance struck! Of course I could do it, but this time with the help of Miss Nadine from Fordfield House nursery.

Between us, Miss Nadine and I hatched a plan which entailed me dropping Gabe and Little Sister at nursery, going into London an hour or so late, and Miss Nadine bringing them home, bathing them, just like Daddy would normally do on the three days that I work.

All in all, our plan went pretty smoothly - putting to one side the fact that on the first day as I walked into the building at a very lazy looking 10am, I bumped into my head of department. "Drat", I thought. Not part of the plan at all. The following day, and still feeling a little shakey from my mad sprint to catch the train, I bumped into the head of the London Office. "Double drat" I thought. I must have looked like I had rolled out of bed late, which could not have been further from the truth! All up though, the week went very smoothly with the help of Gabe and Little Sister being as good as gold, and of course, with the much needed help of Miss Nadine.

In keeping with my "keey busy" strategy, the weekend was going to be busy one as I had accepted two birthday invitations for Gabe and Little Sister on the Saturday, and had also invited friends and their 4 year old daughter, Chloe, for dinner and to stay.

The first party was Gabe's friend Alice. This was a busy affair. Not only did I watch my determined little boy sit down with all the other children and eat his party food, I also watched as he bravely took to the stage to sing "Twinkle Twinkle Little Star" down the microphone. He was very proud of himself and I could have wept with joy. I was a little surpised when he announced to everyone in the hall "my mummy has a lovely singing voice". This, of course, could not be further from the truth and my amused friends were quite keen to see me lose all dignity and demonstrate this skill. Fortunately, I was saved by the many 3 - 4 year olds who were clamouring for the microphone.

On route to the next party, Gabe told me that he wished he had sung "Puff the Magic Dragon" instead of "Twinke Twinkle Little Star". He then bellowed out the words for the rest of the journey home, which, whilst lovely and cute (if a little tuneless), prevented Little Sister from having her much needed afternoon nap.

Zach's first birthday party, followed by much playing with Chloe, left us with two very tired little children today. That said, Gabe and Little Sister still managed to enjoy playing with the children in the road, who at one point, were all sat in a row in the Spring sunshine, eating ice cream (yes - Gabe too!).

A wonderful, wonderful weekend.

Of course, no matter how busy I kept myself, Holly and Kerry were constantly in my thoughts. Thursday was Holly's funeral. I did not go. I couldn't. I was just not mentally strong enough. At the moment her service started, I closed my office door, put my head down, and said a silent prayer for Holly, her mum Kerry, and all the other children and families that continue to battle childhood cancer.

Gabe's Mummy

Pictures of Gabe swimming

2010-03-24T10:54:00.010Z

Gabe and Miss Heidi

Gabe and Olly

Gabe

Keeping busy

2010-03-21T19:43:00.005Z

This weekend, more than ever, I have been determined to live for the moment. I think most of that is connected with Holly. Looking at our family diary, I realise that I have filled in most weekends between now and mid June. I know exactly what my subconscious is doing...living for the moment. Trying to pack in as much as possible while we are all in good health... which we hope and pray will be for ever and a day. That said, tomorrow it is Daddy's turn for a hospital stay as he heads in for surgery for a rather large hernia that has been troubling him for the last couple of weeks.

Our weekend started early. Aunty Jen and Uncle Al once again treated us to a wonderful night out and asked us to spend the evening with them at their box at the Liverpool Echo Arena. This time it was Katherine Jenkins, the Welsh Opera Star, that we went to see. We stayed at Aunty Liz and Uncle Baz's and we had the nicest time -there is nothing better than being with family and good friends and just enjoying life and being happy. I still don't know if I would have appreciated that concept had Gabriel had not become ill.

Back at home, a couple of my lovely work friends and their partners came for dinner last night. We relaxed, we ate and we drank (lots of) wine. It was lovely, and so very very normal. Today, our lovely neighbours, Ali and Steve came for Sunday lunch. A great afternoon.

But no matter how hard I try, I cannot stop thinking about Holly and my good friend Kerry. I am simply devastated that Holly did not survive. I am devastated for Kerry, Vince and their families. I am also devastated for Izzy and Harry, who in all probability, are unlikely to remember their big sister, and how much she adored them.

To be perfectly honest, it is all just too close to home. The older Little Sister gets, the more she worships Gabe and follows him around. In return, Gabe (or "Babe" as she calls him) looks after her, adores her and rather foolishly lets her (the diva that she is) boss him around. My sister and I mean everything to each other and it is with great pride that I can see the same relationship develop with Gabe and Little Sister. The slightest thought that they will not have the privilege of growing up together overwhelms me with sadness and fear.

But at the same time, I know that Holly's death has taught me something. Life simply must go on.... Kerry must carry on, not only to physically look after the needs of little Izzy and Harry, but also so that one day, via Kerry, they will know and understand that they have a very brave big sister who loves them so very, very much.

We lit a candle for Holly at church today. Gabriel asked me "why are we always lighting candles for Holly"? That comment reminded me just how little Gabriel understands about the battle that he, and far too many other children put up to this horrendous beast that is cancer.

Gabe's Mummy.

Holly is now at peace

2010-03-19T15:17:00.002Z

It is with great sadness that I can share with you that Holly earned her angel wings this morning.

Fly high sweet Holly, rest in peace.

The world was a better place with you here.

Gabe's Mummy

First swim for so long!

2010-03-17T19:31:00.005Z

After some deliberation about how best to re-introduce Gabriel to swimming, we opted to let him have his first swim in an environment that he would recognise - so Fordfield House swimming pool it was.

He has not been swimming since his Hickman Line was first fitted back in the autumn of 2008 and I honestly thought he would never have the chance to swim again. They were such desperately sad days and despite my best efforts, I just don't think I will ever be able to explain in written or spoken words just how horrendous they were. Unless you have walked in those shoes, you could not possibly understand.

His last swim was in the summer of 2008....UNTIL TODAY.

Armed with his new swimming trunks (which despite being aged 2 - 3 were too big and kept falling down), Gabe headed to nursery. All day at work, I found myself wondering if he had been to the pool, whether or not he had been excited or scared, whether or not he had actually made it into the water, and if so, enjoyed himself.

Well here is the answer via his report card from nursery today:

"Gabriel loved his swimming today. He requested the company of Olly in the pool, so we thought it would be best if he had a friend there too. When he got out he even asked Miss Heidi, when can I come again? He did not really want to get out."

Miss Tiff has promised photos!

Thank you Miss Heidi and Fordfield House for making Gabriel's first trip back to the pool a wonderful experience. We are so grateful. He has not stopped talking about it all evening and has gone to bed a very happy and tired little boy.

Gabe's Mummy

Happy Boy

2010-03-16T09:43:00.006Z

I just thought I'd post this picture of Gabe without his nose tube!

When I collect Gabe and Little Sister from nursery, the first thing they have when they get home is a little snack and a drink of milk. We then play for a bit, then it's bathtime and PJ's ready for when Mummy comes home. It's a lovely little routine.

Gabe loves computer games, and always wants a go on the Cbeebies website. I don't always let him as I don't think it's the best wind down before bed, but he's been so good with his eating that the other day, I did.

Doesn't he look happy?

Gabe's Daddy.

Doing well

2010-03-15T20:58:00.004Z

It has now been 10 days since Gabe's nose tube came out and he has been solely dependent upon eating and drinking rather than the nutrini energy feed. Given the battle he has put up against AT/RT, I should not really be surprised by how determined he is to eat and not have a new nose tube inserted. That said, he is not eating enough, but he really is trying and has sampled new tastes including home made fish fingers, roast chicken and even good old baked beans (which he said were horrid - seriously, how can you not like baked beans?)

He has developed a love of cocktail sausages - admittedly which come under the junk food category but which are very high in calories, so permitted. His favourite thing though is, without doubt, Hot Cross Buns (I am a little worried as I am sure the shops stop selling them after Easter). So far, I am delighted with his progress. He does not look like he has lost any weight, but we will wait and see at the official "weigh in" at our next appointment at Addenbrooke's.

We have had a really lovely, normal week which was topped off by a trip to Aunty Em and Uncle Paul's (aka Hotel Babylon) for session 2 of our "Come Dine With Me" competition.

Let me explain. The idea is pretty much taken from the television show. Aunty Toe and Uncle Paul, Aunty Em and Uncle Paul, Daddy and I, form three teams in competition to produce the best meal. Every couple of months, we meet at one of our homes. One couple is assigned the task of making the starter, another is assigned the main course, and the other the dessert. In January we met at Aunty Toe's for round 1. This weekend was round 2 which entailed me making the dessert.

My recipe choice was American Cheesecake. I had a cunning plan up my sleeve in the form of help from my good friend Jay (who is a fab baker). She arrived at the Davies 4 headquarters on Friday night to help out, as we cracked open the first bottle of wine, she declared my recipe to be a poor one, and randomly picked a few extra ingredients to add. We had so much fun and finished up in the early hours of the morning, proud of our achievement, and rather giggly having consumed far too much wine.

Come Saturday the Davies 4 headed to Hotel Babylon and met with the competition. I immediately made the school girl error and foolishly declared Jay's interest in my dish - I could almost see Aunty Toe (who is very competitive) mentally deducting points. Needless to say, having been labelled a bit of a "cheat" (which I have to agree with) we did not win. We had a lovely evening, delicious food and great company. Gabe and Little Sister were in their element too - they love Aunty Em and Uncle Paul - so much so Little Sister was banging on their bedroom door at 6.15am the following morning.

But whilst we have had a lovely "normal" week - the kind that we relish, others have not been so fortunate. We hold very close to us the pain that Holly and her family are experiencing as they face the very difficult journey of leaving the ward to start palliative care. Holly and her mum, Kerry, are one of the very few other cancer families that I have allowed myself to grow close to.

I am so saddened that it somehow feels wrong to report the fortunate week that the Davies 4 have had. But I must. Not only is Gabriel's journey his own and one that must be recorded, but also my life and way of thinking has truly changed since the awful day in 2008 when I was told that Gabriel had a brain tumour. Through the pain and the countless tears, I think I finally understand that every second we are granted is precious and that every moment is to be relished.

Sometimes it is just hard to do that.

Gabe's Mummy

I am just so proud.

2010-03-09T17:46:00.004Z

I cannot tell you how well Gabriel is doing with his eating. He really is trying and his hard work is paying off!

I took him to Addenbrooke's today to see Amos (I worked yesterday instead of today) who was not only thrilled by Gabriel's appearance and general good health, but agreed that we must give Gabriel the chance that he has asked for. We also met with his new dietician, Carla. Since Gabe's nose tube came out on Friday night, Daddy and I have recorded every single morsel of food and drink that has passed his lips. Nursery did the same yesterday and offered him something to eat every couple of hours - little and often is the key to getting food into him. Carla praised me on the record we had kept (of course she does not know my passion for making lists) and said that given he was not really eating anything, he is doing amazingly well. I am just so proud of him. He is so very determined not to have Mr Pipey Pipey back.

Something else pretty big happened today. We met another little boy who has AT/RT and who is under the care of Addenbrooke's. This was a pretty major event for me. Whilst I have spoken to other parents, I have never actually met another AT/RT child (Alex). It was sad to know another family have to deal with the same burdens that we do, but it was also humbling to know that Gabriel's journey has given another family hope for the future. Most of all though, as I watched Gabe and Alex play together, I could not help but think about the statistics of AT/RT. Of all the millions of children in the region of Great Britain where we live, there before me where the only two little boys with AT/RT. And that seems so unfair.

We also got the chance to see our friends, Holly and her mum, Kerry. Holly is fighting a relapse of neuroblastoma - we took her in some goodies and Kerry and I went for a coffee. I asked Gabriel if he wanted to come with us or stay on the ward. He did not need a second to think about this and opted to stay on the ward with his new friend, Alex, and one of the play leaders, Judith. I was so proud of his confidence. Do you know, he did not look like a child who had battled cancer, he just looked like a happy, healthy little boy visiting the ward. God willing, that is our future.

Gabe's Mummy

Just look at our boy

2010-03-07T14:24:00.005Z

Seeing Gabriel's face without his nose tube is indescribably wonderful. Just look at him! It has been over 18 months since I have been able to enjoy looking at his face without the constant reminder of the tremendously hard journey that he has been on since he first became ill.

He asked for a chance, and we are giving him it. We are being very strict though, and so far, so good. He has eaten hot cross buns, lots of milk, a roast potato, the yolk of a couple of eggs and a little chocolate. Each meal time we put one thing on his plate and he has to eat it. If he does not, the tube has to go back in. We have told him that this is not a game and that he has a choice. To eat, or to have a nose tube. We know it is hard for him, but he needs food to live. Simple fact. And so far, he seems to understand that. We have told him if he has to have Mr Pipey Pipey back, it is not a punishment, it is just because we need food to survive.

We have had a lovely weekend at Aunty Toe's. Nonna, Aunty Toe and I went to a spa yesterday for Nonna's birthday, followed by lunch and some wine. The children were entertained by Daddy, Uncle Paul and Grumpsy. They got up to all sorts of fun which involved the girls getting so covered in glue and mud, they had to have three baths in total. Gabe of course, being Mr Super Clean, managed to avoid any dirt or glue and thus only had one bath at bedtime.

We had a bit of a dance off in the kitchen to "When I'm 64" by the Beatles (can you guess what age Nonna is now?) and Gabe showed us all his finest break dancing moves.... here he is (with his Jungle Fury (Power Ranger) undies poking out above his trousers - uber trendy boy).

PS - I cannot tell you how lovely it is to be out and about without people staring at him wondering why he has a nose tube - he was ignored! How fab is that!

Gabe's Mummy

That blinkin nose tube (aka Mr Pipey pipey)

2010-03-05T23:30:00.006Z

....... ruined our day. Once again, we were having fun. Just normal things, in this instance, playing hide and seek with Big Girl Cousin and Little Girl Cousin.

From massive laughs came this awful cry and the saddest face. I did not really feel panic because after all, I have seen this many times and have reinserted his tube without any difficulty (bar the normal having to fight the pain of watching my child sob as I physically put him though pain - it never sits right). But tonight, for some reason, the tube did not seem to work. Gabriel was so good. Of course he cried, he wretched, he even tore his finger nail in distress.

But it did not work - I don't know why, and whilst I know I am not a nurse, I really feel like I let him down.

Gabriel sobbed "give me a chance".

By this he means that we should give him a chance to eat enough not to need his over night feed. The problem is we go days and days without him eating anything. We have tried everything that we can think of - we have a reward chart, he sits at the table with his friends from nursery at mealtimes, we have family meals, we cook together, we go to the shops and look at food.

He loved his food before cancer struck and now I feel we have hit a brick wall.

But, we have made a family decision. We are going to give him that chance and keep the tube out for the weekend and see what food we can get him to eat. It is unlikely that he will eat enough and it is very likely that the tube will go back in. BUT we have to give him this chance to see - because if we had not given him a chance to fight his cancer, I would not be reporting his journey today.

BUT ON A MASSIVELY POSITIVE NOTE, all turned out well in the evening. Nonna and Grumpsy were charged with the task of watching our sleeping darlings while Aunty Toe, Uncle Paul, Daddy and I went out and ate curry and drank wine. Shortly after the nose tube incident, Gabe was back to being a Power Ranger charging around with Big Girl Cousin (who I understand is Pink Ranger).

Gabe's Mummy

A normal family week

2010-03-01T19:03:00.003Z

This week has been great. Is it really sad and uncool that I was thrilled to get back to work? OK, don't answer that - deep down I know the answer. But the truth is, desperately uncool or not, for those 3 days a week when I travel into London, I manage to throw myself into my work and for those 3 days, I am just a normal working mum balancing young children and a career. Sometimes, for short periods in the working day I realise that I have forgotten about the AT/RT world that we now inhabit. Don't get me wrong, it is always there, filling me with fear for the future, sadness at what Gabriel has been through, sadness at how Little Sister has just had to "fit in" and is blissfully unaware about how much we live in fear for Gabriel's future, guilt if I tell him off for being naughty.....a million emotions that all get mixed together and that I have to carefully control.

This week has brought one small low in Gabriel's world. Red Ranger, his pet fish, was found flouting in his tank, perhaps the victim of one too many nibbles from his supposed friend, Black Ranger. Remembering the sea of tears that I shed as a child over many dead fish and the countless fish funerals I conducted, it was my gut instinct that the situation needed very careful handling. Quietly, over a cup of strong black coffee, I contemplated my options, all of which involved lying to Gabe. I decided that I would scoop Red Ranger out, secretly flush him down the loo, and then tell Gabe that he had gone back to the fish shop because he had been chasing Black Ranger, who thankfully, seems to be Gabe's favourite.

I did not get the chance. Daddy bounded into the kitchen with Gabe in arms and said, "Oh look, Red Ranger's dead. Is his fin trapped in the filter?".

Gabe promptly burst into passionate tears. I felt really sorry for him and knelt down to comfort him. But seconds later, the tears were turned off as quickly as they had started. "Oh well", he said, "we better go to the shop and get another one. Can I watch Power Rangers now?"

Shocking! Not to mention fickle. Maybe he would have been sadder if it had have been Black Ranger who had lost the battle. I don't expect it will be particularly long before we find out the answer to that given my previous history of gold fish ownership.

The rest of the week was great. Some of our really good friends, the Dukes, came for the day on Saturday. Darcey Duke, also aged 3, played so well with Gabe. She declared him "handsome", and told him that she loved him. Gabe was very bashful and whispered back, "I love Darcey Duke". It was incredibly heart warming - all in all it felt like a very normal family day.

And so we start a new week....and may it be delightfully event free.

Gabe's Mummy

Slight incident

2010-02-22T19:34:00.005Z

Well, I have to report that the Davies 4 have had a lovely weekend and I feel like we are climbing out of our recent low spell. On a really positive note, I am heading back to work tomorrow and feel a lot better.

We were busy all weekend. Caitlyn's 3rd birthday party was lots of fun on Saturday - we missed her party last year as Gabe was mid stem cell transplant.

The evening saw Caitlyn's mummy, Nicky, host an evening party for the neighbours. Gabe was very excited about this although the reality was probably a bit too much for him. He was a little withdrawn when we arrived but before we knew it, I was innocently sipping a glass of wine when I heard the voices of several children chorus "it was Gabriel". Let me explain.

Nicky always hosts a good party. This year, the theme was "fair ground". Each child was given a bag of ten 1 pence coins. A number of fair ground stalls had been set up in her house, including the "lucky dip stall" which involved millions of polystyrene balls safely contained in a bag. Each child was invited to pay a penny, and dig deep for a prize. This had all gone swimmingly well at the afternoon party, but come the evening a certain little boy dropped his lollypop into the bag (or so he tells me), and took it upon himself to tip the entire contents all over the floor so as to retrieve said lollypop.

In Gabriel's defence (well I am his mum, and a lawyer), several hundred had already 'escaped' from the bag, and each child under the age of about 5 was desperate to see the rest of the bag join them... Gabriel just wanted to free those balls.... he wanted to make the other children happy.... OK, I am out of excuses..........he just could not help himself. There was a sea of white balls everywhere you looked in Nicky's house that night. I am still having flashbacks of the 90 year old Great-Grandmother trying to negotiate her way to the kitchen over millions of tiny polystyrene balls.

We left the party about 7.30 pm ish (and not long after the aforementioned incident). Our extremely short walk home involved walking past our neighbourhood park. Gabe and Little Sister wanted to go in, so we did. I think that spontaneous moonlight play was one of the best moments of my life. It was wonderful watching them play on the slide, under the moon and the stars. I found myself feeling utterly relieved that we were sharing that special moment together.

Gabe's Mummy

Important change

2010-02-18T18:35:00.000Z

...to today's earlier entry. Gabriel is not going to be Red Ranger when he grows up. He is going to be Black Ranger -- he is far more powerful, so he tells me.

Gabe's Mummy

When I grow up..............

2010-02-18T08:54:00.003Z

Today feels good. I have woken up (after being awake half the night with Little Sister, who I think is teething again) feeling like my old self! Yesterday I managed a short walk to the post box and back, and today I am going to push myself a little further. At this rate, I will be back at work next week which is great as I hate being off. Not only do I feel like I am letting my colleagues down by not being there, I also feel like I am missing out - I like the social side of things at work. Being at home (when the children are at nursery) is really dull, especially when you are more or less housebound.

Gabe woke up in a really good mood. His reason? Firstly, he had slept in his own bed all night. He is working hard at this because we have promised him a "Power Ranger" bedroom if he can sleep in his own bed all night like a big boy. Secondly, today is Thursday and that means Olly and Elliot will both be at nursery and let's just say he cannot wait to see them. He cried when he was dropped off yesterday because Rory was off sick and Olly and Elliot were not in. After sulking for half an hour or so (and after me having more or less stalked Miss Tricia all morning to make sure he was OK) it was reported that he was over his sulk and was happily playing with Leo and Raffe.

Oh yes, and one more thing. Gabe has decided what he wants to be when he grows up and for the first time, the conversation did not make me feel like crying. He told me he wants to be "a doctor like Amos, and a Power Ranger - the Red One". He is evidently going to be busy and will have his work cut out to achieve both roles. I am impressed with his ambitions - when I was little I wanted nothing more than to work in a sweet shop. I have told him that if he works hard and plays hard he can be both because you can achieve anything if you work hard enough. Surely Gabe has proved that already!

Gabe's Mummy

Vivi Esme Martin 24th April 2008 - 17th February 2009

2010-02-17T10:07:00.006Z

Today is the one year anniversary of when little Vivi lost her AT/RT battle. It is a sad day for us, and I expect an almost impossible one for Mary and Justin, Vivi's beloved parents.

Those of you who follow our blog will know that it was Mary's blog, diarising Vivi's AT/RT battle, which gave us the courage to not only fight Gabriel's AT/RT (a fight we were told had absolutely no prospect of success) but also to share his journey with you, which at times has given me enourmous comfort, and at other times has been tremendously hard.

When Vivi died, Mary wrote that daisies reminded her of Vivi. Whenever we see daisies, we think of this special little girl, who lived such a short life, but taught the world so much. These daisies were planted by Nonna in her garden last year in memory of Vivi.

Mary and Justin, you are always in our thoughts and prayers, but today, especially.

With much love,

Gabriel's Mummy and Daddy

Bath fun

2010-02-16T19:06:00.005Z

Something really lovely happened when Gabe was in the bath tonight. He lay on his back and pretended to swim. He then lay on his front, and again, pretended to swim. This is something he has not been able to do since he started his treatment in 2008 but now that Mr Wiggly has gone and his chest has healed, he is able to submerse his body in water. He was very excited by this, and Daddy and I were clapping and jumping for joy (as much as I was able to as I am still quite sore after surgery). Little Sister looked, well, unimpressed (she is quite the daredevil and would happily try and swim the Channel covered in goosefat if we let her).

I have been overwhelmed by all of the kind messages, cards and gifts that have been sent to me over the last few days. Thank you so much. I am totally on the mend now albeit very bruised following far too many encounters with SHOs. Those junior doctors just take a stab in the dark at where your veins are and unsurprisingly repeatedly get it wrong. I am black and blue.

It is quite funny actually. After all of the hospital stays with Gabe since last summer, I realise that I now know how to play the system. Even after a shot of morphine and two blood transfusions on Friday night, I knew that there was no way in the world I would be allowed home the following day without confirmation that my HB levels had returned to normal. Rather than wait for somebody else to think of this (which nobody seemed in a hurry to do) I managed to find a nurse who confirmed that she had just been trained in taking bloods, (although she volunteered that she wasn't that good but could do with some practice). Good enough for me. After a couple of attempts we had our sample. I tipped her off about the importance of writing the word "urgent" on the blood sample form at weekends, which she did, and within an hour my escape plan was in action and I was hobbling towards the exit, my hand in Gabe's, who kept saying, shouting infact, "Did they give you a stingy in your bum, Mum?" and then guffawing very loudly to himself.

Gabe's Mummy

So normal did not last long for the Davies 4......

2010-02-14T17:20:00.002Z

come Friday morning I had to go to hospital for a check up. I thought I was on the mend but as soon as the nurse saw me, she would not let me go. Within minutes I had been seen by a doctor, and within hours I was having emergency surgery followed by two blood transfusions.

I am now recovering at home and am glad that the last few weeks are behind me. The children are a little shaken by my absence, but I am so grateful that our wonderful neighbours pulled together to look after us until family arrived to take over.

Gabe's Mummy

A normal kind of day

2010-02-10T15:16:00.011Z

How many of us today got up and started a very normal day? Kids to school. Work. Drink after work with friends. Calling in to see neighbours. etc. Just a normal, everyday kind of day.

Our day was normal (although I am still not able to go into work - but manged to work from home). Gabe and Little Sister went to nursery, both smiling, and Gabe, of course, wearing his 4 Power Ranger badges.

It is just so hard to believe that today, a year ago, was a major and central part of Gabe's treatment. Day 2 of his stem cell transplant. The world outside almost seemed to have stopped turning for me as every ounce of my focus and energy was on getting Gabriel through this part of his treatment regime, that we knew was so intense, he may not survive. And a year on.... today....well, it was just a normal, everyday kind of day.

And as our normal day progressed, I could not stop my mind reflecting on just how grateful I am to have this opportunity to be... just normal. Today a young boy, Alex, has his bone marrow transplant. Next week, Holly commences her second intensive chemotherapy regime. This month, how many families are told their child has cancer or some major part of their child's treatment takes place? Too many to mention, too many for it to be fair.

So today, I am reminded how easy it is for the world to stop turning and how monumental just one day can be. My thoughts and prayers are with Alex, Holly, their families, but in particular their mums. In February 2009, we were all residents of Ward C2 and we three mums, who had never met before, found ourselves thrown together seeking moments of refuge in the parents room, inadvertently propping each other up - keeping each other strong - making each other smile - shedding tears and moments of extreme fear. Facing the "today" when everything is far from normal, and normal is just about all that you crave.

Gabe's Mummy

A year ago today...

2010-02-09T21:02:00.000Z

Gabriel had his stem cell transplant.

A whole year ago. My strong amazing little boy.

Gabe's Mummy

Did I mention I love Fordfield House?

2010-02-09T16:01:00.005Z

Those of you who have been following our journey have probably gathered by now that I am a big fan of Fordfield House nursery. Miss Carol and her trusty team have, amongst many other wonderful things, been actively involved in Gabriel's rehabilitation following his treatment, welcomed him with open arms at times when he was seriously ill, treated him like a normal child, given Little Sister a huge amount of normality and stability, and offered me emotional support when I have been in floods of tears (on more than one occasion).

Since I returned to work (3 days a week last year), when I work, Little Sister attends Fordfield House. When Gabriel has been well enough, he has spent 2 days there, and the third day in Daddy's company at home. Recently, with Gabe going from strength to strength, it has been apparent that Gabriel has missed Little Sister when she has been gone and his "rest day" with Daddy has started to be, well a little....boring (no offence Daddy).

God willing, Gabe is due to start school in September and I thought it might be a good idea for Gabe to start a couple of morning sessions at the pre-school play group (Little Learners). We have chosen his school and we have met the Headmaster. Gabe has been to see the school - he loves it. He knows he will start there when he is 4 1/2. I therefore thought that he would enjoy attending a couple of sessions at Little Learners and so we started build up sessions....and that is where it all went wrong.

We took him and Little Sister to Little Learners yesterday. Whilst she charged off and started playing - he clung to my legs and cried, begging me not to leave him. Nothing the nursery teacher could do made any difference - and to be fair to her, she tried very hard. As my youngest child charged around, causing chaos in the "flour pit", my eldest child curled up in a ball and refused to speak to anyone (apart from me). This is just not Gabe and made me feel quite sad. So after less than an hour, we left (although it was quite a struggle to get Little Sister to join us).

I came home and my immediate reaction was to call Miss Carol. In her no nonsense way she told me that Gabe is just not ready. So this morning, instead of having a "rest day" with Daddy, he headed off for an extra day at Fordfield House. He had a smile on his face when he left the house - and that is so nice to see.

I think I was trying to make him run before he could walk. He has been through so much what does it matter if he does not know the other children when he starts school? Most of them will be in that position and Gabe will be a whole 9 months older come September. He is happy at Fordfield House. Little Sister is happy at Fordfield House. It is such an amazing environment I would quite like to enrol myself there too (probably in Mr Tom's class). Little Learners is great too - but at the moment, Gabe needs to be surrounded by those he knows and trusts. When Gabe and Little Sister are at Fordfield House, I know that they are getting the best care possible and that Miss Carol and her team genuinely care about their well being. I know that if he is naughty, he will be told off. I know that if he is going to eat anything, it is most likely to happen there, I know that if he is a little bit tired, Miss Claire will know that straight away and make sure he has a rest. They know him and they understand him. I think it is best to just let him enjoy what he knows and leave our new challenges for another day.

So Miss Carol and your trusty team, if we don't say it enough, please know that the Davies 4 are your biggest fans!

Gabe's Mummy

Power Ranger mad

2010-02-07T18:44:00.008Z

Well, Mr Wiggly has gone. Hurrah.

Gabe is very proud of his large plaster and particularly pleased that he cannot be bathed until the plaster comes off, which he tells me is "at least a week away". I am not sure why he is pleased about this as he tends to enjoy having a bath - maybe it is because I am a soft touch and have been washing him with a warm flannel while he watches Power Rangers.

Talking of Power Rangers, Gabe no longer calls me Mummy. All weekend I have been 'Madison' and he has been 'Nick'. Every now and then he tells me to 'Power up' or something like that, and then I become 'Pink Ranger' and he is 'Red Ranger'. Everywhere we go in the house we have to fight monsters - he has been leaping around blasting and zapping every imaginary being that comes into his mind, and I have been limping in his shadow trying to do the same (the reality is I still do not feel very well). He has been great company and has even allowed Little Sister to join in, she is "Blue Ranger".

Poor Blue Ranger is tonight walking around with a new hair cut courtesy of Daddy. Little Sister refuses to wear any hair clips so her hair tends to go in her eyes and look very untidy. Nain (who used to be a hairdresser) cut her hair a few months ago - and it looked pretty cute. Daddy, who has never been a hairdresser, cut her hair in the bath tonight. Let's just say she has a rather short bowl head - but she still looks cute. That said, there are a few dodgy photos of me lurking around from the 70s sporting a similar hairdo. When I question my mum (Nonna) as to how she could possibly have done that to me, her response is always that I looked cute. So Little Sister, when you are grown up and reading this - it was your Father, not me, that gave you that hairdo - but it is very cute.

Pink Ranger (aka Mummy)

Goodbye Mr Wiggly

2010-02-04T18:08:00.010Z

After serving Gabriel well, the Team has decided that the time has come for Mr Wiggly to say goodbye. Tomorrow morning, under a general anaesthetic, Gabe's life saving Hickman Line will be removed.

This is an overwhelming moment for us. We have come so far. This time last year we were on Day 5 of our 48 day stay in hospital so that Gabe could have his stem cell transplant. By this time tomorrow, Mr Wiggly will be gone. We have told Gabriel that Mr Wiggly is going to help another little boy or girl and he is happy with that.

I am not sure how Gabe will feel once Mr Wiggly is gone - will he feel like a part of him is missing? After all, I am not sure he remembers being any different. He has had Mr Wiggly for some 18 months (nearly half his life).

But I know how I will feel. To be able to bath my little boy without seeing the constant reminder of cancer via wires hanging from his chest, well that is a very emotional thought. I am excited that he will be able to go swimming again and I am relieved that the constant risk of infection will be gone. There is one slight negative. His bloods will have to be taken via a finger prick each Monday rather than from Mr Wiggly - but this is a small price to pay - and is something I have not broached with him just yet. I will save that for Monday morning (approximately 1 second before the the finger prick!).

So Goodbye Mr Wiggly. Thank you for making our lives easier for the last 18 months. No offence, but I really hope that I never see you again!

Gabe's Mummy

Fish pie?

2010-02-02T20:25:00.002Z

First of all, I am sorry about the lack of updates but I have been feeling pretty rubbish and have not really felt up to blogging. But I really must share this one with you.

Gabriel and Little Sister are about to embark on their first experience of being pet owners. Nothing too exotic or high maintenance. Just a couple of goldfish. We have the tank. The water is in and we are in the 7 day period of getting the water just right for its new occupants. Gabriel has already thought of names, after initially wanting to name them after himself and Little Sister, he now wants to call them Black Ranger and Red Ranger (from the Power Rangers of course). They really are quite excited and our new family members are due to leave the pet shop and join us at the weekend.

So his comment of this morning took me rather by surprise.

"Will they be deaded when we cook them"?

Gabe's Mummy

Calling Gabriel's Girls - Race for Life 2010

2010-01-28T12:47:00.005Z

Having picked myself up and brushed myself down, I am feeling emotionally stronger. Because I am meant to be resting (which I find pretty hard to do), I have been spending my time focusing on planning and organising fun things for the Davies 4 to do over the next few months. This is all related to seizing the day and enjoying every special moment.

In addition to this, I thought what better time than now to set about organising Team Gabriel's Girls for this years Race for Life.

The race is taking place on 25th July 2010. This is exactly two years from the day when we were told Gabriel had a brain tumour. Once again, I am going to throw myself into doing something positive rather than reflect on what was one of the most horrendous days of my life. Last year we had a wonderful team of family, friends and neighbours. Since then, others have expressed a wish to be a part of Gabriel's Girls this year.

So, calling all of my (lady) family and friends - old and young (age 0 to 110), if you want to be a part of Gabriel's Girls please can you text me so I can set about organinsing our team. I am taking it for granted that all team members for last year, are keen to be involved so this is really aimed at those of you who were not part of Gabriel's Girls in 2009. Of course, I recognise this is the height of the summer holidays so please do not worry if you are not able to participate.

Gabe's Mummy

The person who nobody wants to be

2010-01-26T20:03:00.006Z

I have been pretty low the last few days.

It all started when Gabe's friend on the ward relapsed and my comfort zone of our recent NED scan ("no evidence of disease") suddenly felt very fragile and threatened. David's loss to our family added to my sadness.

And then my world shook that little bit more. I was admitted to hospital yesterday. I am now home, but it looks like I will be recovering for a couple of weeks.

To say that I sobbed yesterday is a bit of an understatement. As I lay in the hospital room (exactly the same lay out as on the Children's ward where I have spent so many nights with Gabe), my mind started racing, and unfortunately, it took a rather depressing track. I started to think about the many comments that have been made to me over the last 18 months. For example "you have so much bad luck", or "it always seems to be something awful happening to you", or "I don't know what you did in a former life to deserve all of this" etc, etc.

So yesterday, sitting in the hospital bed, feeling utterly sorry for myself, a horrible thought struck me:

'I am the person that nobody wants to be.

It is me, that people compare themselves to, when their life feels off track, or they are sad..... because after all, at least they are not me, living with the burdens of my life'.

If this all sounds terribly depressing, this is exactly how I felt yesterday. Totally sad and utterly horrified at the prospect of being that person who nobody wants to be.

So just for good measure, I cried a bit more.

And then the kindest nurse came and sat with me. She held my hand and she smiled the kindest smile (which made me cry a bit more) and she told me that she truely understood how hard it is to live with a childhood cancer. How did this wonderful nurse know? Because 15 years ago, she lost her teenage son to cancer. She knew about battling, she understood about living in fear, and she had survived the absolute worst, losing her son. She had lived through it, survived, and was still able to smile.

But, most of all, she understood when I told her I felt like I was the person who nobody wanted to be. Why? Because she had felt like that too.

That conversation, coupled with telephone chats with Nonna and Aunty Toe, made me think further. Maybe many people feel that they are the person who nobody wants to be. Until that kind nurse told me of the grief that she had carried around for the last 15 years, I would never have known. As Nonna said to me last night, you only know what people choose to tell you. So maybe I am not the person that nobody wants to be - infact, maybe, just maybe I am the person that people do want to be. Because look at what I have, rather than what I don't have:

Gabriel and Little Sister. My husband. My family. My friends. A job that I enjoy. A warm and comfortable home (with a pretty fab new kitchen). And lets not forget, that all important scan that says "NED".

OK. There has been a blip. I am unwell, at the moment... but I am told I will be back on track in a couple of weeks. So I am pleased to announce that I have toughening up and brushed myself down. My tears have dried. Because being me, really is not that bad - actually, I quite like it!

Gabe's Mummy

David is at peace

2010-01-24T08:33:00.002Z

David died peacefully in his sleep this morning.

Today, my cousin and her two sons start a new phase in their lives.

They will live on remembering how wonderful David was, and David will live on through his two sons, Louis and Johnny.

Gabriel's Mummy

A very hard day

2010-01-21T19:10:00.006Z

Today, I took the day off work, dropped Gabe and Little Sister at nursery, and drove to my cousin's house to offer her and her boys some support. I was met by the obvious things that go with a patient who is dying: an oxygen machine; nurses coming and going.

But something else greeted me too. Warmth, gentle music, and the most amazing power of love and peace. I helped nurse David and I talked to him as I bathed his lips with Holy water. Dry lips are just horrid. David is now unconscious, but I know that he could hear my words.

I thanked him for being an inspiration to Daddy and me. Seeing how he embraced life whilst living with cancer taught us a lot. I thanked him for bringing me a strong black coffee and a bowl of cereal with yoghurt and fruit the morning after Gabriel was diagnosed with his brain tumour. I can remember sobbing and telling him that I was not hungry. I can remember him encouraging me to eat it, telling me I needed strength to fight for Gabriel. So I did as I was told and I ate - and it was quite delicious.

I reminded how he once said that he would not allow himself to die before he was sure his boys were old enough to live on without him. Well he has done that. I was welcomed into his home by two tall, good looking, confident and brave young men.

I told him about how I remembered Kath and his wedding. It was the first wedding of our generation so a very exciting affair with lots of hats. I was 11 years old at the time. I told him that I remembered all the dancing (especially to "So macho" by Sinitta) and the tremendous joy. I reminded him about Aunty Toe (then 12) and I sulking because we hated the outfits that had been chosen for us (including the horrendous bows in our hair). I am sure I saw him smile when I reminded him of that.

And my wonderful cousin Kath? She is terribly sad and she looks tiny and vulnerable. But she is not - she is strong. She has done what she promised him and she has brought him home. He is surrounded by the art that he loves, music that he loves, and his strong, brave family.

I drove home in a bit of a trance and collected Gabe and Little Sister from nursery. I was told that Gabriel had been a very good boy. He must have worn himself out being good because by the time we got home he evidently had a change of heart and was quite the naughtiest I have ever known him to be (Little Sister relished this and was as good as gold). He refused to bath, he threw a few toys and worst of all, he told me he did not like me - at all! And what did I do? I told him off - big time. But now I am full to the brim with guilt for doing that - because after a day like today, all I want to do is hold him, cuddle him and be grateful that I have him.

Gabe's Mummy

PS - he just asked for a cuddle and told me he likes me after all, infact he loves me lots and lots - phew!

Just so terribly sad

2010-01-19T20:31:00.003Z

I write this blog with tears flowing down my face.

I have just found out that one of Gabe's very brave friend's on ward C2 (whose identity I will not share out of privacy) has relapsed and is on palliative care. Cancer is horrendous - why does it have to hurt our beautiful children?

There is not much I can say because I am too shocked by this sudden relapse. Again, the reality of my little Gabe's every day battle comes crashing back giving me a massive reality check. I am now going to go and pick him out of his bed, and put him in bed with me, and I am going to hold him tight - all night.

Gabe's Mummy

A pause in our story

2010-01-18T12:23:00.003Z

I have not blogged for the last week.

This is a very sad time for our family. My cousin's husband, David, does not have very long to live. He is still in hospital and my cousin is doing everything in her power to give David his dying wish, to take him home. We hope and pray that this will be today.

So my lack of blogging and telling you Gabe's funny little stories (there have been a fair few over the week), is not because I don't want to share them with you, but rather out of respect to David, my cousin Kath, and their sons, Louis and Johnny.

Please pray for them all.

Gabe's Mummy

A sad road

2010-01-15T22:48:00.004Z

Once again I drove back from Addenbrookes along the A421, sad and consumed by cancer! In the early days of Gabe's treatment when Mummy and I would swap shifts (prior to getting a room at Acorn House) I would drive home in floods of tears, asking "why my poor Gabe?" Praying that he would be alright.

Well tonight I wasn't at Addenbrookes because of Gabriel. I went to visit Dave.

Dave is married to Mummy's first cousin and over the years I've known him, we've formed a good friendship. I went to see him on Saturday and promised that I would be back to see him again today. I arrived later than planned after putting in a days work and joined Daves wife and eldest son at his bedside. It was an emotional moment as it was obvious that Dave was in much discomfort and very unwell. Being a proud man that he is, I think it hurt his pride a little by me seeing him that way so I respectfully didn't stay much more than 20 minutes, although I would have stayed all night if he wanted.

I told him that I would come and see him again after the weekend but we're unsure if Dave will still be in the hospital. The latest update I have is, as soon as they have managed to control Daves pain, he'll be going home to be with his family.

So, once again the reality of living with cancer comes crashing home. I imagine that Daves wife will be experiencing the same kind of feelings as we did when Gabe was first diagnosed and we were given a similar prognosis. To this day I have to look away when we pass the local funeral directors or a hearse driving along the road. After having to once consider these things and talk about some horrendous decissions to be made about our lovely little boy; I just can't bear to bring those memories back.

So tonight, be grateful of your families, be thankful for your good health and let's pray for those less fortunate.

Gabriel's Daddy.

The day turned out to be a good one.

2010-01-11T18:33:00.006Z

After a particularly rubbish start to the day (thanks to the kind messages of support via the blog and text), we ended up having a really good family day. Even though today is a Monday, and a working day for Daddy, a change of plan was required. Let me explain.

We are in the process of having our kitchen refitted. The work started on Friday and today the wall between the kitchen and the dining room was knocked down because we want to make a large "family room".

This was a project that had been due to start the week Gabriel became ill . For obvious reasons the work was immediately put on hold and to be honest, I never thought that it would proceed. One of my first reactions when Gabe was diagnosed (not the first, which was far less rational) was to run home to Liverpool, to my mum and dad. This house was jam packed with wonderful happy memories of my healthy, happy little boy combined with feelings of my ignorance that I took my perfect life and healthy child for granted.

It feels good that we are now going ahead with the work - it is a positive thing to do.

Gabe was very excited when the work started on Friday. The guys doing the job seem to be very nice, in particular the plumber, Taz, who is a grandfather himself. Gabe followed him around the house and kept showing Taz his "things". At one point, Sean, one of the builders, was removing a door frame. I heard a concerned little voice ask, "Why are you breaking my house".

Later that evening, after the men had gone, I heard a very sad little boy crying in the kitchen.

"What ever is the matter?" I asked.

"Just look at the mess Taz has made" he said. "I just don't like what he has done with our pipes".

I tried not to laugh, really I did. I failed. My little boy just loves everything to be neat and tidy, or "tickety boo", as we say. A bit like Daddy - alien to me.

So today, with dust billowing around the house, Daddy and I opted to have an impromptu "family day". It was a bit hard deciding what to do as the snow is still very much here and Gabe gets cold quickly and struggles to regulate his temperature. So we headed to Milton Keynes and went bowling, and then to the cinema to see "Alvin and the Chipmunks". Our day was fab. Believe it or not, Little Sister was good all day and even behaved herself in the cinema. I think the effort of being good (combined with her 5am start to the day) has worn her out and she was sound asleep by 6.30pm tonight. Perfect. Gabe was not far behind and after some high jinx, he too was crashed out before 7pm. That means that for once, I have an opportunity to be nice and prepared for work tomorrow.

Gabe's Mummy.

Decision made

2010-01-11T09:05:00.003Z

I have just spoken to Amos. Lovely understanding, gentle Amos.

Amos has said that bullying him into eating at this stage just will not work and he needs nutrition to recover.

So the tube is going back in.

For a few precious hours I have been able to see my handsome little boy without his tube, but now it is going back in - what a horrid start to his day.

Gabe's Mummy

Nose tube accident

2010-01-11T08:15:00.002Z

Today has started badly. Little Sister accidently pulled out Gabe's nose tube (Mr Pipey Pipey). Gabe absolutely hates the procedure of a nose tube being re-fitted and has become quite hysterical. This morning is a crashing reality check in just how different our family is to the norm.

It is one of my jobs to replace the tube. I hate doing it. Gabe has said that he will eat enough so that he does not have to have it replaced. In reality I just cannot see this happening when the extent of his daily food intake is a few bites of a biscuit or a few spoons of soup. Additionally, work has now started on our kitchen and builders are knocking one of the kitchen walls down today - not a day for me to be trying to tempt Gabe with different foods (which I do all the time, but so far has had little success). Daddy is pro the tube not being replaced, but I am conscious of the fact that we celebrate if Gabe eats half a biscuit - how can a little boy advance his recovery if he has no nutrition?

So I have put the decision in the hands of the Team and left a message (a little teary so I hope they understand me) with them. I hope that someone comes back to me by 9am because our community nurse is due to visit to collect Gabe's bloods and she could refit the tube if that is the decision the Team come to. If it is later than that, it will once again fall on my shoulders to inflict Gabe's most hated procedure on him.

Gabe's teary Mummy