William's Progress

Firstly, our apologies for the delay in this update but things have been pretty hectic over the last couple of weeks.  I know a lot of people have been keeping updated via facebook and we thank you for all your kind messages of support. 

Grace had her operation on Friday 20th January.  She was incredibly brave and the operation was a big success.  The marrow that was harvested was really good quality- a high volume and high stem cell count.  We really couldn't haven't asked for more.  She was up and walking about straight after coming around from the anesthetic and scoffed down a jacket potato!.  We were lucky enough for her to have the adjoining room on the same ward as William.  The marrow was checked over and bought up for the infusion by about 2.30p.m that day.  Grace was able to come in the room with us, give her brother some cuddles and the marrow was delivered by IV infusion over a 4 hour period.  Amazingly, William was bouncing on the bed towards the end of it. ( please take a look at the pictures via the photo tab.)

Grace was allowed home that day and has recovered really well- she went back to school the following Tuesday. 

Since the transfusion, Karen and I have been alternating on a 3 day shift up at Great Ormond Street.  William is now on day 18 post transplant and generally things have been going to plan.  Initially, he was surprising the doctors with his level of energy and good spirits however, as is inevitably, the effects of the chemothearapy began taking effect.  Currently, he is suffering from Mucositis -a painful inflammation and ulceration of the mucous membranes lining the digestive tract.  This happens in pretty much all cases following chemo although William has some bad inflammation of the oesophagus (the food pipe that conects your stomach to the throat).  This was determined via a CT scan yesterday.  The good news is that his lungs are fine but he is needing a little oxygen at night to maintain good levels.  He is on morphine so this keeps him comfortable and there are times during the day that he is happy and smiling watching his favorite Mickey mouse DVD's and playing drums.  Then he will wear himself out and have a nap. The doctors think that his cell counts will start coming up in the next few days and this will help him heal up.  In the meantime, its lots of cuddles and regular checks.  All in all he is doing well and they are confident that Grace's cells will graft successfully.  

Thanks again to everyone for your amazing support- it really is helping us as a family to deal with this process. The medical team at Great Ormond Street have been fantastic- he really is in the best place possible.  Lastly, a big thanks to Auntie Natalie who has been helping us juggle everything including some decorating work in preparation for William's return home. 


If anyone has any questions feel free to email me at shuttertripping@yahoo.co.uk. 

all the best 

Justin, Karen, William and Grace. xx