38th Blood transfusion on #WorldBloodDonorDay & Thx to @wipeawaythosetears

It was #WorldBloodDonorDay yesterday and Henry took full advantage by having his 38th blood transfusion 😁. We also had time to pop in to the Neonatal Intensive Care Unit to say hi to some of the nurses who looked after him while he was there. They were very pleased to see him, they even got kisses which is unheard of for Henry, he must remember what the did for him ❤.

We also wanted to say a huge thank you to a brilliant Essex charity @wipeawaythosetears who bought Henry an iPad to use at the hospital, he spent the whole time on it yesterday and it made him so happy. Thank you from all of us x

World Blood Cancer Day

Henry wanted to share an important message, as well as a very sunny bank holiday, today is also World Blood Cancer Day. Day to day, we try not to think about the likelihood that Henry will develop blood cancer, because it terrifies us. However, it’s important we do think about it and talk about it, because the more people that know, the more people we can (hopefully) get to sign up with DKMS as stem cell donors. You know what to do! http://www.dkms.org.uk/henry
#DKMS #wbcd

Hi there! Transfusion no.37 done and feeling better

Transfusion no.37 today and clearly feeling better with some new blood! Unfortunately his blood was so low that they couldn’t put enough in again, it wouldn’t be safe for his heart to give him as much as he needs. It means we’ll need to come back for another transfusion in three weeks which is a little frustrating, but a small price to pay for keeping him here 😍. Thank you blood donors x

#GiveBlood #ImThere #DBA

Low blood, flu virus takes its toll

Poor little Henry hasn’t been feeling too well for the past few weeks. He’s had a horrible virus which has meant his body has had to work extra hard, so he’s run out of blood more quickly than usual. He looks terrible, is exhausted all the time and is really struggling to fight off this bug with the blood he’s got in him. Luckily, one of our nurses was able to come and take blood from him this morning and we will be getting him in to hospital for a transfusion as soon as we can. Let’s hope they’ve got enough blood for him this month… When I asked how he was feeling this morning, this was his response!  x

Fundraising night success

We had a fab time last night at Henry’s 80s & 90s disco, thank you so much to Ann Farthing for organising, the Galloper team at Innogy for their kindness in providing the Milsom voucher and everyone who came to support us in raising £281.72

Well done to Paul Grubb who won the £150 Milsom voucher, enjoy!

Transfusion no.36 done and dusted

“Don’t worry, I’ll save time by taking my bandage off for you” 🤣. Transfusion no.36 done and dusted, we had a bit of a panic on as there was only one bag of blood available and it was a small one…luckily the nurses are pro’s at squeezing out every last drop, he had to be hooked up to a bag of saline after to make sure he got the extra blood that was in the line after the bag was empty 😳. Hopefully it’ll last him the month…only the lab knows why there was so little blood available but it’s likely because blood stocks are running low because not enough people are donating blood. Please donate if you can, Henry relies on you! NHS Blood Donation x

Big News Update

Hi everyone, I know you’ve all been waiting for an update on where we’re at, thank you for being patient with us.

We saw Henry’s consultant in London last week to discuss treatment plans going forward and we were in no way prepared for what was coming, everything has changed. We’ve exhausted a lot of the treatment options we had and Henry now qualifies for a transplant from a unrelated donor. His pump medication dosage has been increased and we now have 6 months to try and get his iron levels down as low as possible (it’s too high to do a transplant any time before that, it would be too dangerous). A transplant date will then be set, if we are all in agreement that’s what we want.

Unfortunately, we no longer have time to have the IVF to ensure Henry has a matched sibling donor for his tranplant. In light of all of this, we are halting the fundraising after our next event in a few weeks. We intend to use the money raised to have IVF in the future so we can ensure we do not have another child with DBA, if, for whatever reason, we cannot do this, the money will be used to help other children in a similar predicament to Henry.

Blood was taken last week to search the worldwide bone marrow register in the hope we can find an unrelated donor, a complete stranger who will be a suitable match for Henry. Now, more than ever, we are asking for help to make sure Henry finds a stem cell match for his transplant.

Please, please register with DKMS UK, it’s just a cheek swab. The chances of you being called upon to donate are extremely slim but if you are, you can usually donate your stem cells in the same way you donate blood and can rest easy in the knowledge you have literally saved someone’s life.

Thank you all so much for all of your help and support over the past year, it has been an absolute rollercoaster which is set to continue, but we will continue to do all we can to ensure Henry has the best chance of a long and healthy life. We will carry on posting updates on here as usual so you can follow Henry’s journey.

Love you all,

Z x

Henry took mummy to the woods to find ‘Stick Man’

Thank you all so much for the love, it means so much to us that you’re all in this with us, we couldn’t do it without your support. I should have some time to reply to everyone individually later on so bear with me! We’ve been enjoying some well deserved Henry and Mummy time over the past few days between hospital visits, Henry took me to the woods to find ‘Stick Man’…x

Devastating news

Well, despite trying to put a brave face on yesterday for Craig’s Birthday, we’ve had a really crappy few days. More complications which are delaying the IVF, but that’s the least of our problems. We got the results of Henry’s liver MRI scan which he had last Friday and they’re heartbreaking. Five nights a week for the past four months, he’s had to have a needle inserted in his leg every night to be hooked up to his medication pump in the hope it would clear some of his iron. Sadly, this hasn’t happened and the amount of iron in his liver has increased, putting more pressure on all of his organs. This includes his heart…at the hopsital yesterday they discovered his heart murmur is back again. We have to go for a re-scan of his liver in three months and if there’s no change or it continues get worse, he will have to have a port fitted under the skin in his chest so he can be attached to the pump 24 hours a day. He’s so happy and often looks so well, it’s so easy to forget how sick he is. Absolutely devastated  xx