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Well, we have BMT date, we're all set to be admitted to hospital on 9th April for Henry's transplant. The date might change the closer we get but it's something for us to work towards. He's got lots of hospital appointments and procedures before we get there (teeth check, tummy, kidneys and heart tests plus central line fitting) all booked for March in London and Oxford, so we're focusing on them first 🤞! It's all happening...😳 x

Happy Valentine's Day from the wee man. Made ourselves useful and went to #giveblood yesterday, gentle reminder to donate if you can 🙏 x

In for blood transfusion no.48 yesterday (thank you blood donors ❤). It's so strange to think that Henry might only need a few more until he has his bone marrow transplant and will (hopefully!) be well on the way to making his own blood from then on. Forgot to share the gem 💎 of a pic from his last transfusion where he spent most of it with his head in a toy bucket 😂 x

*GOOD NEWS ALERT!* We went back to St Mary's yesterday for the results of Henry's biopsies and were given some quite unexpected news...the scarring and iron overload in his liver have improved so much that he's ready for transplant without the need to go on the pump 24/7! We've been given a provisional transplant slot in April so we're just trying to get our head around it all for now. Go Henry (who is clearly feeling rather fabulous about it all)!!! 💪🤞 x

Thank you so much for all the lovely messages, we read them out to Henry in the hospital and he said "ahhh cute, thanks"! We're home, blood transfusion went fine and made it out of London just before rush hour 🙏 . We're back for his biopsy results at the end of January and he'll then be scheduled for surgery to have his central line fitted in Oxford. More adventures! X

Quick play time then a good sleep before surgery tomorrow. Henry's having a bone marrow biopsy, liver biopsy and a stem cell harvest 😢, already endured 5 attempts at a blood test today...he's a lot braver than we are! 🤞

A very Merry Christmas to all you lovely lot. Thank you so much for all your love and support this year ❤ x

Tiring day for us Alderson folk. We went to London to visit Henry's specialist and we have a plan! Scan in Birmingham no longer needed (we're really relieved but also a smidge disappointed as I'd earmarked a chocolate binge at Cadbury World on the way up 😂). Instead, Henry will have liver and bone marrow biopsies under anaesthetic and then another anaesthetic at a different time, to have either a port or a Hickman line fitted so he can have his iron pump running 24/7. This might be for 6 months, 12 months...there's no way of knowing. We knew it was coming, it still feels rubbish but at least we know we'll be getting him ready for transplant as quickly as we can. We can plan towards transplant because we were told today that a 12/12 matched donor has been found for him (you can't get better than that unless it's from a sibling donor)! We are so relieved and feel so lucky to be in this position. Many are not, so please join the stem cell register with DKMS UK and give others the hope that we now have. The decision to go forward with the transplant has not been taken lightly, we were briefed of the risks again today and were told there's a 1 in 10 chance Henry won't survive the transplant. We wish there was a better, less dangerous and less brutal option, but there just isn't yet. DBA UK support and fund research into better treatments and we will be doing our bit to raise as much awareness and funds as we can on their behalf. Wish us luck for everything that's to come and stay tuned 😉

Today...I am 3! Happy Birthday to the best boy, couldn't be any prouder. He's had a lovely day full of cake, cards and presents (I may regret the drum kit purchase soon enough, good thing our neighbours love him 😬)! Hard to believe this time three years ago he was fighting for his life and we had no idea what the future would hold for him. We owe a lot of people a 'thank you' on Henry's behalf; to all of the @NHS staff past and present, who take such marvellous care of him, to @DBAUK and all the other DBA families we're lucky enough to call our friends, to @rallysportautomotive and @bradleysfight for all of their hard work and support, to all of the lovely charities who have gifted Henry and made his life as super as possible (The @SandcastleTrust and @WipeAwayThoseTears to name but a few) and lastly, to all of you for sharing our good days and bad days for the past 3 years. We love you all, thank you x

Blood test day! We've managed to stretch transfusions out to every three and a half weeks which is brilliant as it means less hopsital visits and hopefully less iron issues. Bad news is, it means we have to drag the lovely community nurses out at the weekend so they can get blood ready for us for next week. They are absolutely brilliant and we're really lucky to have them. Good thing Henry is well trained and usually has a cup of tea ready and waiting for them 😁!

morning, beach again! 😃 . . . helpourhenry.org . . #henryslittleheroes #goodmorning #morning #morn #awake #walking #wake #ready #tired #instagood #earlybird #photooftheday #goingout #instamorning #beach #early #fresh #skyporn #DiamondBlackfanAnaemia #donate #goodcause #toddler #kid #instakid

Good morning! Beach time ❤ . . helpourhenry.org . . #henryslittleheroes #goodmorning #morning #morn #awake #wakeup #wake #ready #beach #instagood #earlybird #photooftheday #goingout #instamorning #instadog #early #fresh #refreshed #DiamondBlackfanAnaemia #donate #goodcause #toddler #kid #instakid #GrandBassetGriffon #GBGV

I love ice cream 🍦 . . helpourhenry.org . . #henryslittleheroes #icecream #kid #instakids #DiamondBlackfanAnaemia #child #icecreamvan #icecreamtruck #childrenphoto #love #cute #adorable #instagood #young #sweet #handsome #little #photooftheday #fun #family #baby #instababy #icecreamcone #happy #smile #instacute

"Mummy, Daddy, Henry...in there!" We're in issue 40 of @pick_me_up_magazine spreading the word for @dkms_uk and @dba_uk this week 🤗 x . . helpourhenry.org . . #henryslittleheroes #OurStory #kid #instakids #DiamondBlackfanAnaemia #child #family #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #magazine #blonde #instababy #play #happy #smile #instacute

#Repost @dkms_uk • • • • • Check out our little friends who have gotten behind @marrowformarley's search to find a blood #stemcell donor! 💕 🐶 🐢 . Could you be a match for Marley or someone else in need? ❤ Head to the link in our bio to register as a potential blood stem cell donor today! ✨ . #dog #puppy #pup #cute #instagood #dogs_of_instagram #pet #pets #animal #animals #petstagram #dogsitting #photooftheday #dogsofinstagram #ilovemydog #instagramdogs #dogstagram #dogoftheday #lovedogs #lovepuppies #hound #adorable #doglover #instapuppy #instadog

Giving some before we take some tomorrow 💪😁! #GiveBlood #SaveALife #DBA . . helpourhenry.org . . #henryslittleheroes #mummy #daddy #kid #instakids #DiamondBlackfanAnaemia #child #children #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #family #baby #instababy #play #happy #smile #instacute

Captain America in da house! Thanks for sharing our frustration on Friday. Henry's absolutely fine and woke up singing on Saturday so all is well! We've got a busy, blood-themed week, nurse tomorrow to take blood, donating blood on Wednesday, (us, not Henry!) then blood transfusion on Thursday. Hospital called us last week and said that he needs to be fitted with a heart monitor for 24 hours too as they're a bit worried about his heart rate which is always high...hopefully nothing to worry about 😊 x . . helpourhenry.org . . #henryslittleheroes #CaptainAmerica #Marvel #Avengers #MarvelAvengers #kid #instakids #DiamondBlackfanAnaemia #child #NHS #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #family #baby #instababy #play #happy #smile #instacute

So after the horror of yesterday, half way on our 3 hour drive home, a partially sedated Henry & a petite mummy who should know better, decided to have some fun at the South Mimms service station after a poo'y nappy change 😷😝😂❤ . . . helpourhenry.org . . #henryslittleheroes #mummy #kid #instakids #DiamondBlackfanAnaemia #child #bugattiveyron #childrenphoto #love #cute #adorable #instagood #young #sweet #donate #handsome #little #photooftheday #fun #family #baby #instababy #play #happy #smile #instacute

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