Friday, 23 June 2017

Myelodysplasia Thank Yous

Earlier today I posted thirty-five tweets, telling our family's story of the last seven months and saying thanks to lots of people. But not everyone is on Twitter, so here they are for your delectation in one post, thirty-five chunks of 140 characters or less (unless I've changed the Twitter handle to an organisation's real name).
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We are home after 7 weeks living in Bristol for our eldest's bone marrow transplant at the Bristol Royal Hospital for Children. Here's the story in 35 tweets of thanks! 1/

So many people have helped us: naming them risks forgetting some - you know who you are. This is an attempt at publicly saying Thank You! 2/

Our GP team spotted something was wrong in November, which led to initial hospital admission. GP support has been practical and kind. 3/
The Children's Haematology and Oncology team at the Royal Belfast Hospital for Sick Children cared for us well, broke bad news to us compassionately that first weekend [and are still looking after us well]. 4/
Ultimately he was diagnosed with a one/two-in-a-million condition with bleak prognosis unless he received a bone marrow transplant in Bristol. 5/
(not enough kids in Northern Ireland require treatment to sustain a bone marrow transplant unit in Belfast) 6/

And then the wait began, looking for the right donor match, and for the threat of a chicken pox episode to subside. 7/
Frequent clinic appointments and dressing changes became our 'new normal' through winter with support from South Eastern HSC community nurses. 8/
Meanwhile our son's haemoglobin levels kept dropping. He wouldn't be alive today if it wasn't for blood donors - like you? 9/

The search for a bone marrow donor ultimately led to a young German who matched perfectly: 57mls of life! 10/
Our son would have life-threatening leukaemia today if it wasn't for that bone marrow donor. Find out more by searching for the Anthony Nolan Trust /11

We left home in early April, and went to Bristol via Oxford for a procedure through the Future Fertility Trust at John Radcliffe Hospital /12
Our home was "Sam's House" - we don't know what we would have done without this CLIC Sargent facility and the community within. /13

The Bristol University architecture and spaces, especially Royal Fort Gardens, were an oasis for clearing the mind and a godsend for kids burning off energy! /14

Boys #2 and #3 enjoyed 'hospital school' in the Hospital for patients' siblings every day - a growing & fun experience with great teachers! /15

Entire Oncology/BMT team (Ward 34 and Day Beds) at Bristol Royal Hospital for Children gave outstanding care to our family... /16
...I love it when "multidisciplinary teams" work (and these are just the ones with whom we had contact): administrators, anaesthetists,...  /17
...chaplains, consultants, dieticians, doctors, hotel services assistants, nurses and nursing assistants, pharmacists, physios,...  /18
...play specialists, surgeons, teachers, and more - together they gave truly competent and compassionate care. /19

Treatment far from home means we have shared highs and lows with staff and other patients' parents who we might never see again. Thank you. /20
To our family and friends, feeling even more helpless than we do, thank you for simply being present. So encouraged by you. /21
Your emails, cards, gifts, messages, food, cheques, pet-care, prophecies and physical presence have been the grace of God in action. /22

We're particularly thankful for the practical + loving support we've received from our Methodist Church family, in Ballynahinch and beyond. /23
Our church leaders @ Ballynahinch Methodist kindly made arrangements for my extended absence + have faithfully led our people in prayer. /24
We're staying in Ballynahinch this year but I stop being the Methodist minister next week; so pleased to welcome Ruth Craig in my stead. /25

The boys' school has been so understanding & caring for our three pupils during the trauma of diagnosis and through their long absence. /26
The whole school and Ballynahinch Baptist Church raised funds for us that helped with travel and other costs related to treatment - thank you! /27

People have been so kind and thoughtful across this island, across denominations, across the globe. Body of Christ is a beautiful thing. /28

Here's my hero ringing the bell to mark end of treatment http://bit.ly/2sL3dtU. He's gone through so much so far. God is good. /29

We're really glad to have the continuing help of Macmillan, CLIC Sargent, NI Cancer Fund for Children, and more. /30

MegaMorph was outside Bristol Children's Hospital for 2 days. We were there for two months. But now we're home! /31

What's next? Our son could take months to fully recover, and simple illnesses can still be dangerous to him. But healing will come! /32
Forgive us if we avoid you if you're sniffling! Please keep praying for his protection, complete restoration and God's glory in the story. /33
And pray right now (if you don't mind :) for his recovery from an undiagnosed infection that's hospitalised him this week. /34

Through it all, hundreds of people have been praying for our son and family. Thank you. God's peace, hope, love and joy are real. /35

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