I’m not going to say ‘Happy Mother’s Day’

I’m not going to say ‘Happy Mother’s Day’ because I’m acutely aware that this day isn’t a joyous occasion for everyone. For years, it was simply a stark reminder to our family that we had lost a mother, a daughter…although Henry’s arrival has eased the pain a little for all of us. I’m so proud of my Mum, she was a shining example of bravery and resilience in the face of the Big C and I hate that I’ve had to navigate the past 18 years without her. This absolutely would not have been possible without the love and care of my Nan (and Grandad) who gave up everything to take care of me and are the glue that hold everything together. I’m sorry you had to watch Mum suffer and now worry about Henry too, I wish I could fix it. I know I don’t say it enough, but thank you and I (we) love you. I know you love Henry more than me now but I’m mostly ok with that x

MRI Ferriscan done!

MRI Ferriscan done! Long day for us all, London traffic means we won’t be getting home for a while but Henry’s been a star. Wherever we go, people are always kind enough to comment on what a lovely temperament he has and how happy he is, today was no exception…he had the staff wrapped around his little finger! He was sedated for the scan and woke up as soon as he came out of the scanner, good timing . This scan will show us how well his liver is responding to his chelation drugs and how much iron he has (hopefully) lost, as well as how much we have left that we need to get rid of x

A singing boy at Hospital

Busy few weeks of appointments with more to come. We saw the dietician after Henry’s transfusion last week, hopefully she will help us get Henry more comfortable eating different foods. Henry sung his was through a two hour eye appointment this morning, a regular check up for him as the medication he has pumped in each night can damage your eyesight. Then, off to London later this week for another liver scan to check whether the pump is working to strip the iron out. So brave, so proud  #DBAlife

Transfusion no.34 done (despite ‘snowmaggedon’)

Hope everyone is staying safe, we’ve had more snow this afternoon and really grateful we didn’t have to brave the roads again. Henry’s feeling much better after blood transfusion no.34 yesterday and was very happy in his new chair. He was getting a bit frustrated at the lack of response from the hospital ‘telephone’ though (TV remote 🤦) x

Snow disruption nearly stops us getting Henry to hospital

Well this is an adventure, left for the hopsital hours ago and didn’t make it past the bottom of our road, called Essex Police for a traffic update and they offered to send out a police escort to get Henry through the snow to his blood transfusion! Absolutely amazing gesture. Ultimately not been required as traffic is now moving but so lovely to know they’re there for us. High five #EssexPolice (let’s hope we don’t need you to get home!) X

Respect your NHS community nurse

Massive respect to our lovely Nurse who drove a 40 mile round trip in a blizzard this morning to take Henry’s blood and made sure it safely arrived at the hopsital ready for testing for his blood transfusion later this week. Hero of the day! #thankyouNHS #Nursesareheroes

Also, we’ve lost half a Henry x