Dear Daniel

It is now over a year since I wrote in this blog, dont ask me why but for some reason i felt unable to do so. This last year has been the hardest time in my life. Having recently passed the 1 year mark of Daniels passing I felt compelled to write him a letter.

Dear Daniel,

Gosh where to start, I miss you so much and love you more, i am broken hearted. Yes, you will see me laugh aswell as cry, be happy as well as sad....but the day you left me i changed and i will never be the same.
Where are you now? if only i knew, i believe your with Grandad somewhere much better than this place....but i cant see you, touch you, laugh with you. I miss your personality so much, you kept us strong, held us all together. Dad and i tried our best to keep you here, but in the end it was too much for you. We never gave up hope, even when doctors told us. In the end it was unfair to put you through anymore. Did you know? did you know you where leaving? Its a question i ask myself over and over....we never lied to you, but you never asked. Olivia misses you like crazy and sometimes says she is lonely without you, even though she has Lewis. Everyone talks about you all the time, you will never be forgotten, you touched so many lives son. The thing is people say me and dad deal with things with a smile, whatever life throws at us, thats because we had you in our lives, you made us who we are. I know we only had you for 6 years but i would do it all again even it was for less...
Mummy loves you to the moon and back.
Miss you so much
Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxx

Daniels Eulogy...

Decided since many of you (especially my friends in the US) couldnt make it to Daniels funeral thought it was a good idea to put his Eulogy here, it was written by his uncle - Chris and is the PERFECT tribute to him;

It is said that the light that burns twice as brightly burns half as long.

Daniel David Beamish burned so very brightly.

This is a day that no family should have to endure. The passing of a child is perhaps the most unfair, un-natural event in this world. It is impossible for any of us to imagine the sense loss Liz and Michael must be feeling.


Daniels passing has left avoid in all of our lives. It is a void that can never be filled nor should it be. With his passing Daniel has left for us cherished memories and the knowledge that the last elements of pain in his life are now over.


Our children are a reflection of ourselves. Our personalities, our beliefs and all that we hold dear. While for the majority this is true you only had to spend a few seconds in Daniels world to realise that he was truly unique. Daniels personality was cheeky and mischievous. Never one so shy away from the obviousness of a situation or poke humour into sometimes the most inappropriate of places.


His beliefs were simple,he loved his family unconditionally as a child should. He played, fought and laughed with his sister Olivia and brother Lewis. He brought light and laughterto his grandparents Lynn, Phil and Liz. He lived every moment with his Mum and Dad by his side.

Daniel was a beloved son,brother, grandson, nephew, cousin and friend.

There was no situationthat Daniel could not bring light and laughter to.

I would like to take this moment on behalf of the family to thank all of the amazing staff at Alder Hey Children's Hospital who worked tirelessly to help Daniel through 5 rounds of chemotherapy. At each stage of histreatment Daniel amazed doctors as he kept bouncing back, outwardly he always seemed to respond to the therapy.

Unfortunately as we know last month the decision was taken to stop all treatment. This is something noparent ever wants to face.

I have huge respect for how both Michael and Liz kept the fun in Daniels life during this dark and difficult period.

However, stopping thetreatment gave the family time to live life a little more and they did more with Daniel in the last 3 weeks than they had been able to in the past 7months.

They enjoyed the simple things, getting out more, going swimming, building Lego and of course videoingevery precious moment.


In Daniels last few weeksmyself and Lynne were lucky enough to spend time with him out of hospital at his home. I'll always remember he was in great spirits. We played outside, ate chocolate and cake and ice-cream. Daniel was a real shining light who never let his illness get him down.

Daniels bravery throughout his treatment should be an inspiration to us all.

Difficult though it may be,amongst the tears of mourning we need to remember we are here to celebrate Daniels life.


Daniel David Beamish was born on 28th august 2004, within 7 weeks he was diagnosed with "Biliary Atresia" by 2006 it was apparent that Daniels liver disease would see him needing a transplant in his teenage years.


Despite this Daniel sstrength and spirit saw him living and loving life as much as any little boy could.

Thanks to his family he was well travelled for a boy of his age. He visited France twice, holidayed in spain and experienced the joy of American hospitality in Florida. He went camping and felt the sun and sea in Devon. He visited Castles and Palaces in Scotland and even took to wearing a kilt in February.


He even had occasion to visit hospital in Dumfries almost as if he wanted to check out the facilities and ensure the staff were up to speed in all things liver related.

But all the time he knew he was living a slightly different life.

As we grow older life becomes more mundane and sometimes troublesome. I like to think that Daniels life, apart from the obligatory hospital visits was, filled with Bouncy castles and birthday cakes.



To his Dads delight Daniel loved Lego more than was healthy for any little boy.He loved to build and play with his Lego in his room taking great care to ensure that he had just theright pieces set up in just the right way. He was always quick to tell you if you weren't playing it right.


Hospitals were never far from Daniels life and because of this they we never frightening or intimidating to him.

This was so true in his last few months. We will never know how much of his pain he kept from us. At times it seemed like he would protect his mum and dad from knowing too much.

Daniel was wise beyond his years his eyes displayed an inner strength that we must now have.

Daniel boasted many things in his short life but most of all he lived for his, familys and friends.


He had the ability to touch, change and even shape lives not through grand gestures or heroic deeds but bysimply smiling through adversity.


He had the ability to show anyone the true meaning of what it is to be a child. He enjoyed the simple pleasures he appreciated everything.


Daniel would not want us to mourn his passing. His innocence and strength will live on within all of us.

Daniel left this world just as he had lived it, in the ever loving presence of his mum Liz and dad Michael.

In our hearts Daniel is immortal and there he will live forever as a child



Sleep tight our brave wee man

Daniel David Beamish 28.08.04 - 10.08.10

Most of you will already know on 10th August 2010 My beautiful Brave Wonderful Son lost his fight to both liver disease and Leukemia.

Now i feel the need to share his last few hours with everyone. On the morning of Tuesday 10th Daniel was sleeping on a matress on our bedroom floor (at his request during the early hours of the night before) somehow the last few weeks we had managed his pain at home and that is where he really wanted to be - actually asking Michael "promise me Dad we wont have to go back to hosp".....Michael and I got up as normal but i had a feeling it might be a bad day so had arranged for Lewis to be dropped at my mums and as Olivia was on her hols it ment just the 3 of us at home, when michael left with Lewis - Daniel was still sleeping so i jumped in the shower as normal, when i got out Daniel sat bolt uprite, looked around and being a bit confused asked "im not back in their am i? (meaning hosp) so i said "No Daniel look at the windows - where are you?" once he realised we where still at home he settled....he soon started throwing up though once i had given him his meds, everything i tried he just threw up, at this point he was so weak his head was just falling into the sick bowl as i struggled to hold his head and the bowls full of vomit Michael arrived home and could see how distressed we both where, he sat with Daniel while i rang the home team (aka Macmillan nurses) i told them he couldnt hold anything down - not even the anti sickness meds so they needed to bring IV stuff. The nurses had been told should Daniel need IV we would get him back into hosp but now I had changed my mind, Daniel was so sure he wanted to be at home. It took them a while to sort out the IV stuff but they said they would be with us by midday. My sister then turned up before she was going to work and came upstairs, she hadnt been there long when Daniel showed signs of irritation and distress...we had been given medication for this, incase it happened, so she helped me give it to him (it doesnt go into the stomach it goes nxt to the gum and is absorbed almost instantly) he soon settled into what was more like sedation than sleep. Michael and i went and got all his favourite Books and Music and started talking "normally" to him and saying...remember this, and that. We played loads of his favourite tunes too and he could hear them because when some came on he made a noise that assured me he could hear what we where playing and saying. When the nurses came a few minutes after the sedation kicked in they sorted the IV painkillers and anti sickness and he was comfortable then. We asked advice on how long it would be - and she said it was hard to tell but his breathing had changed and we better get our parents/relatives we wanted here. So Michael rang his mum and Dad and brother to tell them of the situation and they both decided to come. My mum was also coming, but unfortunaltely Laura (my sis) had to leave to look after Lewis so mum could come over. Anyway, we sat Michael and I holding his hands, stroking his head, kissing him over and over telling him we loved him and how much he had changed our lives and how we would love him for eternity, but all the time i felt he was waiting for michaels parents to come. My mum had come and she too had sat with him and spoke to him about all the stuff they used to do - from baking cakes to doing "shows"! By 3.30pm Liz and Phil had arrived (Daniels grandparents) who came in and again read his favourite story to him (michael had done this earlier) after 10 mins or so they nipped for a coffee downstairs leaving my mum talking to him, after they all left it was just michael and I again holding his hands and I said to him " Daniels it time to go now baby - everyone is here, you have done all you can we love you so much and always will"....a few seconds passed and even though he had been sedated and not moved for hours, he turned his head to his Dad, and looked at me, it was like he was saying "goodbye" with his eyes, no words, but just the look. I knew he was going, i wispered it to michael, we both kissed him over and over and 20 mins after his grandparents had arrived at 3.50pm he just took a last breath and left this world for a much nicer place.

I felt his spirit leave this world, you may think its mad, you may not. But i felt his presence had "left the room" not being the end, but just moved on, his whole body now relaxed and in no pain, no more suffering - just peacefully sleeping. Michael and I both believe he is in a better place.

Goodnight my precious boy, mummy Loves you to the moon and back xxxx

Making Memories.....

Well the last week has been packed full of simple things that Daniel has wanted to do (most of you know the basic details from FB but i decided to give a bit more detail here). We started off with "Toy Story 3 in 3d" last week Daniel really enjoyed the film despite asking after 30 mins if it was nearly finished!! He was a little uncomfortable in the seats due to his now massive (and expanding) tummy but he managed fine. Next in line was a trip to a chineese restaurant that has a chocolate fountain....bare in mind Daniel hasnt actually eaten anything for months (he is tube fed) yet he was still desperate to go, so off we went with some friends and family and he throughully enjoyed himself "waiting on" everyone, he was up and down many times and even managed some cheesecake and a few bits from the fountain. Next Day was a visit from Grandma and Grandad (from scotland) and that too picked Daniel up - he loves Grandads attention and enjoyed spending some quality time with them both!.
Our days are filled with visitors and gifts coming through the post from all our wonderful friends, Daniel gets tired alot and has spend alot of the time recently sleeping - during a 24 hour period he may only be awake 6 hours or so but the time he is awake he is still enjoying his time.
Michael and I had a chat with Dr Caswell on Monday, he is Daniels consultant and yet had been on holiday when the decision about his treatment was made. I knew at this point what the doctor would say but Michael felt the need for closure, he needed to hear it from Dr C. He did. He basically told us they had done everything, tried everything but he had "resistant disease" and it hadnt responded to any amount of chemo. He said "looking back the response got less and less on each round of chemo" that means the disease from the beginning had started to fight the chemo thus making it ineffective.
Back onto the memories, well today was a good day. Whislt speaking to Dr C Michael decided to ask if Daniel could go "swimming" he has been asking to do it for months but with his central line being in place we had been told it wasnt possible, however now things had changed and they said "yes"!! Im so glad they did because unbeknown to us Daniel had gotten out of bed in hosp and made his way over to the office where the docs and us where discussing it! The biggest smile i have seen for months appeared across his face and he literally skipped out of the building. So, today we went, i had been saying i thought he may only step in and get out, but NO Daniel is still as determined as he ever was and he managed nearly an hour in the water, he played on the "fun house" and went on the BIG slide with his Daddy and even had a swim in the pool with his armbands - That same smile i saw yesterday never left his face for the whole time :) He is amazing....that word.....that child.....amazing xxx

The hardest time in my life

On Monday 19th July Michael and I where told Daniel will recieve no further treatment for his Leukemia. His body is simply too weak - we are devestated.
The decision was taken by the doctors after reviewing his last 2 bone marrow biopsys. The first was before the last round of chemo, the 2nd was after - it was TOTALLY unaffected, the chemo had failed. Initally doctors said perhaps it was worth a try just to see and then another blow....it had entered into his blood stream and for the 2nd time since last December he had "blast cells" (or cancer to you and i) in his blood. Doctors said if they attempted another round it was not going to "cure" him but mearly prolong his life for what might only be weeks and not very good ones at that.
Daniel, this way is surrounded by his friends and family doing things he loves, he will remain at home until the time comes for him to need additional pain relief in hospital. We have been told a bed is available for 24 hours a day 7 days a week. It is our decision to take him back into Alderhey i cant begin to tell you how wonderful they have been and he is so used to being their surrounded by people he/we know who have now became friends.
Me, well my heart is broken i never ever though i would have to write this post and with each and every day a little piece of me dies too, i will never be the same person I was.
We have no idea "how long" but doctors says "weeks" at most. One thing i will say is that as a family we would never have gotten through the last 7 months without the amazing unwaivering support of some very special friends and family - Daniel is lucky to have been part of such a special group of people. We love you all.
xxxxx

so far so.......

Good!

Lets start with the positives - Daniel has now clocked up 5 rounds of chemo, the 5th of which was 2 weeks ago and he survived it (which in itself is an achievement!) not only that but he is doing well i wont use my word "amazing" because this round has been tough and as i write he has a bug again in his central line, this time he is alot more tired and appears yellow/grey in colour. The diahorrea continues into its 6th month as does the vommiting and in himself he has good days and bad. Today has been a good day and despite his blood pressure dropping and constantly needing blood and platelets he has managed a little stint in hospital school where he painted a "bear mask" and had a small go on their computer. Mostly he is just watching DVD's and TV and lying in bed recouperating. Michael mentioned to the docs how this seemed to be taking it toll on him and his reply "consider this round Major surgery" in comparrision to the other chemo this is tough stuff.
He is sceduled for another biopsy tomorrow, which they are expecting his bone marrow to be "empty" as it is yet to regnerate after chemo, if this is the case they will repeat it next week, if it has any cells (good or bad) they will crack on with another round of chemo next week in order to prepare him for transplant. Originally they did say the last one was "it" but his little body has again proved them wrong and they are pushing on with more. Although this is good news, it is, at the same time VERY scary knowing the effect it had on him this time, i cant help but wonder if the next update will be as good :( .

Its back - but never really went away :(

Its been a while since my last update and in that time Daniel had another round of Chemo. Suprisingly he was GREAT! right the way through and beyond he seemed to cope with it and take it all in his stride.....i was so worried about how his body would handle a 4th round and yet he managed wonderfully....we have been in and out alot, due to high temps and infections, our last stint (2 weeks) ended on Friday and we are home for the weekend.
Now, i say home for now because Dr Caswell talked to Michael on Friday and gave us the news we had been dredding - that despite 4 rounds of intensive Chemo Daniels Cancer has returned and is again at 60-70% in his body taking over most of his healthy cells. To say we are shocked/devestated is an understatement - no real signs or symptoms that this had happened and the only real clue where the "unexplained fevers" he kept having that where put down to a mystery infection. The doctor explained - its not good for the cancer to still be there when chemo is still happening it means he has "resistant disease" the cells have mutated and started to fight the chemo, making nigh on impossible to cure with chemo alone.
7 months ago when this nightmare started we where told he would not be able to have a bone marrow transplant because of the risk to his liver. Now that statement has been blown out of the water and the drs have decided to go with another round of chemo and hopefully (if we reach that point) a bone marrow transplant. The main issue with all of this is his liver, as things stand today his liver function remarkably has returned to normal but this is serious chemo, stuff they have avoided purely because they "expect" it to cause liver problems with "healthy people". The truth is the doctor said there is only a slim chance Daniel will actually make it through the chemo, then they will see if its had any effect on the leukemic cells, if it has, they may need to do more or if its totally gone they will proceed to transplant.
We are numb.