I forgot to wear a poppy this year nor did I observe the minute silence at 11. I was too engrossed holding Fabian’s hand and gazing into his beautiful face as he lay peacefully dying in a hospital bed, his respiratory rate becoming slower by the hour.
Just 4 days before, he had been at home, weak but stable, enjoying visitors to the house. That week had begun with an unplanned trip to Legoland. It was the final day of their season and thankfully, one last chance for him to enjoy his favourite theme park. The next few days were spent in daycare having the usual reviews and blood products. Fabian agreed to having an NG tube fitted so that we could run overnight feeds. He had effectively stopped eating since the last sepsis in early October and as the gastrostomy had failed too, was slowly starving himself. This was a daily source of anguish for us, so having the tube back was a relief, short-lived as things turned out. Then we were telephoned on Friday to be told that a blood culture showed another gram negative infection was present. We immediately started oral antibiotics but within a few hours he had deteriorated to such an extent that we needed an ambulance ride to A&E where a team of nurses and doctors worked feverishly to stabilise the developing sepsis. Déjà vue, I thought, as Fabian lay there on oxygen support, heart racing, BP falling. At such times, the doctors take you aside to discuss ‘options’. The gravity of this situation was made clear. But being the fighter that he was, Fabian made it out of emergency and onto the ward and the immediate threat to life was over. However, this time his BP did not fully recover and this set in motion the consequential failure of his organs as they were gradually starved of oxygen. Alongside this, Fabian’s disease symptoms were rising fast, so inevitably he required a morphine pump to manage this. His agonising bony pain was thankfully subdued by this potent drug and he slipped into a semi-comatose state.
We had started to call friends and family to visit and many came. Fabian knew this and attempted to rally, giving us flickers of hope that the infection might yet be fought off. In truth, his kidneys had failed and fluid and toxins were steadily building inside, placing pressure on his heart and lungs. They attempted inserting a urine catheter, a most undignified procedure, but strangely only after they withdrew it did Fabian wee! He just continued to surprise. Then came a seizure. This was both unexpected and frightening, yet once again he pulled through with no immediate signs of neurological damage and continued communicating with small sounds and hand movements.
I guess any denial that we were at the so-called end of life stage finally left us once they stopped further transfusions. These were simply adding to the fluid build up and exacerbating that problem. I requested they keep up the antibiotics which they did more out of compassion than for any meaningful purpose. In any event, his PIC line then failed so we lost all intravenous access.
Now Fabian had been asking to go home and it became our focus to make this dying wish a reality. We also had the option of transferring to a nearby children’s hospice where practical support would be on hand. Time wasn’t on our side, though, and we were advised the very act of transferring him could be fatal. So we agreed to stay the Monday night and reassess things in the morning. That night was agonising. Our girls were with us as we cuddled round Fabian’s bedside, speaking loving words to him as he lay serenely, eyes closed, his breathing by now, alarmingly slow. Fluid in his lungs was making this quite laboured but he maintained this minute by minute. I glanced at my watch, noting it was past midnight and was now Remembrance Day. Would this be the day we would never forget? Somehow, we still kept praying for healing. Faith in extreme adversity is a powerful force and we knew God raised even from death as He did so through Jesus on earth. Well, we. didn’t witness a miracle that night, but by morning there was a noticeable improvement in Fabian’s breathing, enough for the decision to agree to discharge him and go home. There is considerable bureaucracy in such a situation and this delayed matters by vital hours, but by early afternoon Fabian was safely back where he had wanted. It was so very timely. His best friend had just arrived and was able to make one last piece of Lego and place this in his hand. Just a few short hours later Fabian drew his last, surrounded by our presence and love as we said goodbye to him on this earth.
He now lays at rest, surrounded by treasured items as we await his service of remembrance. It will be a fitting occasion to mark the passing of a unique little boy whose short life touched and impacted so many, from royalty downwards. A huge sinkhole, as it were, has opened in our family but we have the assured, bible-backed guarantee of meeting him again and in this, we take comfort for now.
So to the many thousands of followers of my family’s journey recorded through this blog, you have been a silent, continuos support to us, especially to Fabian knowing as he did that he was known and loved worldwide. I dedicate this site and it’s future development to his memory and pray that our story will be a resource to comfort, support and encourage any who must tragically face the terminal illness of a child. Please post a comment below that we can record these in a book of condolence.
“Friends, we want you to know the truth about those who have died, so that you will not be sad, as are those who have no hope.”
1 Thess 4:13
He will be missed, but always remembered.
Fabian Luke Sebastian Bate 02/03/02 to 11/11/14
27 Responses to Remembrance Day 2014 – our fighter goes home
“Precious in the sight of the Lord is the death of His saints” (Ps 116:15). We stand with you and pray for you all. Fabian’s life and death has already spoken to many, we pray that just as Abel’s faith still speaks, though he is dead (Hebrews 11) so will Fabian’s life and death continue to speak in the generations to come. You are in our hearts. With lots of love from Dave, Bella and Rachel Aldrich.
Fabian was the first child we met at the Marsden when Daniel was starting treatment. I have happy memories of Fabian sat playing Lego for hours. Ever since we first met Fabian I have followed his story and prayed for him. I am so sorry that you are going through this. There are no words that will ease your pain, but I take comfort from Revelation 21 v4 ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”
I only learnt of Fabian today when I came across a news article on line referring to his being visited by the Duke and Duchess when he was in hospital. The photo and your brave son’s story has touched me so deeply that I felt the need to extend my heartfelt sympathy and admiration for your brave little soldier.
I am old now but have three grown children of my own and thank God they are fit and healthy.
I have made the picture of little Fabian with our Duchess into my desktop wallpaper and will offer a prayer for Fabian and all your family every time that I open up my computer.
I am 67 years old emailing to people I never heard of until a few hours ago about a little boy on the far side of the earth. As I do this the tears stream down my face and my heart aches for your young son.
God bless all your family and may He grant you peace.
I started following your blog and praying for Fabian in August 2013 when my 15 year old daughter Leah was having her bone marrow transplant in Bristol. Leah died in the N.I. Children’s Hospice in January 2014. I’m so sad that Fabian went through so much and I’m so very sad that you have had to say goodbye to him. I know that he’s in a much better place but you will forever have a Fabian shaped hole in your hearts and in your lives. Praying for you.
I am so sorry for your family, but so thankful that you have the hope of seeing him again in heaven. Praying for you all.
Dearest Bate Family: Fabian’s courage – and all of your family’s – will never be forgotten. Sending love and strength from Sheri, Terry, Emily, Madeleine and Ben Brissenden xxxx
I am am Educational Psychologist for Surrey who came to your home to assess Fabian a couple of years ago. I have always remembered him and the wonderful, warm loving family that surrounded him. He was a lovely boy who had been through so much in his young life but seemed to remain so positive. I have been following Fabian’s journey on your blog and am so sorry to hear of his passing. I feel very privileged to have met him, however briefly, and hope that you and your family find comfort from each other and from your Faith.
No words are enough to express the anguish of losing a loved one, especially a child. Thank you for sharing your pain and struggles with us, Darrell, as Fabian battled his leukaemia. He fought bravely to the end. It is useless to ask why God allows such things to happen, though inevitably, we do. What remains in our hearts is the Fabian we knew and loved, memories for you to cherish of happy times doing special things together, for us of visits when a little boy made endless lines of toy cars, then built endless and ever more complicated Lego models in between (and sometimes during) his times in hospital. He touched so many lives and we thank God for him. We pray you will all know His comfort now and into the future.
I remember Fabian from fox ward where I was a student nurse. I can still remember him with his cars that we both pushed along the corridor when he was well enough to come out of his room. He didn’t want me to stop playing and get on with work – so I must have played with them cars for hours. I also remember once Lydia asking me to sit in with Fabian while she had a shower – she offered me her magazines to read. You always were such a lovely family and a pleasure to have met during my student years. My most fondest memory though is when I done my next placement on safari ward and I saw Fabian come up there – he was keen to take his hat off and show me his hair!! Such a lovely boy – he was an absolute pleasure to nurse. Gone, but never ever forgotten. Xxx
Kindest thoughts and deepest sympathies from Australia.
I don’t know you or your family personally but I have followed your story. I was greatly saddened to hear of your little boy’s passing. I hope you find comfort in the days ahead.
Much love from New Jersey, USA
‘Precious in the sight of the LORD
is the death of his saints.’
Fabian’s battle was backed by more than the angels who took him home…
None less than by our Lord they brought him to.
‘Thou tellest my wanderings:
put thou my tears into thy bottle:
are they not in thy book?’
And precious too are our sorrows;
For just as there’s a Book of Life for saints who’ve faithful lived,
There’s one of Lamentations for our temporal trudging.
Fabian remains an inspiration for us all,
And my thoughts and prayers are with you at this time!
Darrell, I was so desperately sad to hear about Fabian passing away. From reading this blog and from speaking to you on different occasions, I have followed your highs and lows over the last year. One thing that has always shone through in your writing and speaking to you has been an incredible pride in Fabian and what a brave and inspirational child he was. My thoughts are with Fabian and you and your family and I hope that one day, sooner rather than later, no more children have to go through this.
Darrell, Lydia and Family – we are thinking about you all here in New Zealand after hearing the sad news that your brave, courageous Fabian passed away.
“Perhaps they are not stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy”.
Darrel and family. I am so sorry to hear of your loss. I have been following Fabian’s blog for a while and have marveled at his strength and courage and also really appreciated the way in which you have shared his journey. You will have made a difference to other families facing the same battle.
So sorry for your loss Darrell, but I know you faith will support you and your family in this difficult time. My thoughts and prayers are with you all.
My heartfelt condolences to your family. I look forward to meeting Fabian in his new and glorified body! I pray our Savior holds you tightly in His Hands until that wonderful reunion! No more pain. No more sorrow. No more tears. All things will be made new. Until then, Brother, hold fast as The Day approaches!
Soon and VERY soon…
Williamsburg, VA USA
Fabian Luke Sebastian Bate – what an absolute star you are! Your life touched so many people and your bravery and endurance will not be forgotten. Your battle is now over and you’ve won the prize, but your story will continue to inspire and bring comfort to many.
So so sorry for your loss. I got to know Fabian briefly in October at Kingston Hospital when I was called in to tutor him while he was in the children’s ward. This was very special for me; the love and support that you showed your son in front of me Lydia is something I will remember forever. Today it was amazing and so heartwarming to see the love, support and tributes for Fabian at his service of thanksgiving. He was an amazing boy and such a fighter never complaining about the pain he was in. I feel so much for all of you and I am here to offer support in anyway possible… (Tutor – Education Inclusion Service – Achieving for Children, Kingston) xxxxxxx
Darrell and Lydia,
So sad to hear of the passing of Fabian. Having two children myself I can only imagine this painful loss for you and your whole family. I just want to pass on my love and prayers to you all. I discovered your sad news through Diane Cottey on Facebook. I was in your home group some years back when at St. Stephen’s but you may not remember me. May God and His strength be with the Bate family X
dear Darryl , Lydia
Just to let you know I have followed your journey from the beginning and my heart and prayers go out to you and Ben , Oleander and Cassia.
Fabian was a brave and beautiful boy who fought so long and hard and such an inspiration .
I had prayers said at our church and lit candles at church .
God Bless each and every one of you
with all our love
Sharon , Natasha , Brandon and Julius
Love and prayers from the churches of Langcliffe with Stainforth & Horton-in-Ribblesdale, Yorkshire (Sharon Selman’s churches). I saw Fabian’s picture in the Daily Telegraph and report of the Duchess of Cambridge’s letter. “We will meet merrily in heaven” (St Thomas More).
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Rest in peace, Fabian. I will think of you every Remembrance Day. I have read your story as I am a friend of the Balloqui family (Chloe Balloqui). x
Ever since watching #raininginmyheart I have felt compelled to find out more about your lovely son Fabuan. I have been shocked by the depth of feeling I have for your son and feel like I have grieved for him. He was so full of life and cruel fate robbed him of this.
You must be so proud of him that he was able to touch so many lives in his brief time. His soul shines brightly and he lives on with all those whose lives he touched.
Thank you so much for your message, it was very moving to think a stranger was so touched by Fabian’s story. He certainly had a special place in many people’s hearts and we are so sad the world has lost one who had so much to give. Do keep in touch if you would like and help keep his spirit alive in our hearts.
Darrell and Lydia
Dearest Bate Family: Just to say that we have been thinking of all of you the last few days and sending you love and strength. Fabian’s courage and your strength as a family is something many of us who have met you will never forget. All good wishes, Sherixxx