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     

                    

  

                    

GOSH Day -5

William is doing well and is in good spirits.  Hes enjoying playing his drumsticks on anything that makes a loud noise!

It was very emotional for William and Grace to part on Friday, but thankfully to Skype they can see each other every day :-)

William has started a number of different drugs (pre conditioning) which help protect his lungs, kidneys, liver  etc from the Chemotherapy.  Its making him quite sleepy but appears to be coping amazingly well for a little boy who is quite unaware of what is going on!

The first dose of Chemo will start today and he will receive two different drugs 3 times a day for 4 days before Graces Bone Marrow is harvested on Friday 20th.

Thanks again for all your wonderful messages.
Love
The Sainsburys

The Countdown!

The Countdown!

William was admitted to Gosh on Tuesday 3^rd for his Hickman Line and Peg line to be fitted on Wednesday 4^th.  The operation went well, and they also removed his old Port line and gave him a CT scan to make sure the Shunt was working well and not blocked.

William was very sore for a couple of days after his operation but is now back home and recovering well.  Playing his new drum kit he got for Christmas!!!

We have another visit to GOSH on Tuesday 10^th for Grace and William to have further blood tests pre transplant, then its home for our last couple of days as a family.

 William will be admitted on 13^th January and the Chemotherapy will begin on Sunday 15^th for 4 days 3 times a day.

We met with many Doctors, Nurses and therapists that will be part of a large team helping William and Grace though to process.  We actually stayed in the transplant room that will be home for the next couple of months.

Thank you again for all your wonderful messages of support.  We will update the Blog every few days once we are admitted so you can stay up-to-date with his progress.

Love from

The Sainsburys

xxx