Looming scan

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

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 without questionning 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

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!

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 ....

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

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!

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