Skip to content

Henry's Little Heroes

Help us give Henry a future

Thanks for supporting Henry!

<a href="https://helpourhenry.wufoo.com/forms/mkqa82e1jjs7ao/" rel="nofollow" target="_blank">Fill out my Wufoo form!</a>

Advertisements

Share this:

Click to share on WhatsApp (Opens in new window)
Click to share on Twitter (Opens in new window)
Click to share on Facebook (Opens in new window)
Click to share on Pinterest (Opens in new window)
Click to share on Reddit (Opens in new window)
Click to email this to a friend (Opens in new window)

Like this:

Like Loading...

FACEBOOK

FACEBOOK

INSTAGRAM

Not the Saturday night we'd hoped for, someone unclamped their Hickman line...😒. He's only had it a week and already broke it, haha! X

Hi All, sorry for lack of updates, Henry's fine, he's doing so well with his Hickman line and has been good as gold having it flushed and the dressings changed each week - here's the evidence it really doesnt bother him! We had a call a few days ago to let us know that Henry's transplant has been postponed by a few weeks, we don't mind too much as it'll give us a chance to enjoy Easter at home 🐰🐣🍫 (although we're under strict instructions to stay away from everyone so Henry doesn't pick up any bugs!). We had one more trip to St Mary's on Thursday and now that should be the last time we're needed in London until the transplant 🤞 x

Ta dah, we have a 'wiggly'! This will be used to give Henry all of his chemotherapy and other drugs he needs for his bone marrow transplant. He also had a sample of his testicle removed so it can be frozen and stored, in the hope they might be able to grow sperm from it in the future and he may be able to have children (the chemo is likely to make him infertile). We're really lucky to have been given that oppprtunity but Henry has been in quite a lot of pain with it so far 😳. Aside from that, absolute hero 🤩. Thanks very much for all the love, we always read all the comments to Henry and he appreciates them just as much as we do x

Off to theatre! Wish us luck 🤞

Last bath for a year! We're heading to Oxford for Henry to have his Hickman line fitted for transplant tomorrow, so it'll be speedy showers only from now on. We've had a really busy week, Henry had his 50th blood transfusion and lots of tests in London to make sure his body is up to the transplant. We had some not-so-great news about his heart, he's been diagnosed with a serious heart condition which is affecting how well his heart is working 💔. The good news is, he's been given the ok to go ahead with the transplant still, but we'll be lifelong visitors to the Royal Brompton from here on out and the prognosis is a little scary. We're down but not out, he's a tough cookie so we're sure he can handle whatever gets thrown at him 💪💗 x

Promised Jess I'd share this. She asked Henry if he'd like any toys to play with while he was having blood transfusion no.49 on Friday and he said "an astronaut"...🙈. Instead of saying "No astronauts here kiddo" she spent a good hour searching the ward for suitable supplies and helping Henry craft his very own robot spaceman 😄👍! He's beyond chuffed with it, thank you Jess, you made his day ❤. BMT will be bittersweet, we'll miss this lot so much when we don't have to come in for blood any more x

It could be you if you've signed up to the stem cell register! Visit @dkms_uk to register if you haven't already 👍

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

Advertisements

TWITTER

Post to

Cancel

Send to Email Address Your Name Your Email Address

Cancel

Post was not sent - check your email addresses!

Email check failed, please try again

Sorry, your blog cannot share posts by email.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy

%d bloggers like this: