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 

Fun Day

Hi All!

Wow what a day!!  The fun day raised an amazing £3700 towards Williams fund, ensuring that travel expenses and home sterilisation can be met pre and post transplant.

Over 400 visitors arrived at the West Tarring Young Peoples Club to enjoy the festive games and treats!  Father Christmas had a wonderful time meeting so many good children! And most importantly there were many happy and smiling faces.

We would just like to say a special thank you to all of the helpers and organisers for the day.  Without you all it would not have been possible.

William will miss most, if not all of his pre school next year before he starts school, so it is events like this that make his time interacting so worth while. We are also so grateful that that Laugh and Learn have made us all feel a part of the family. Your generosity, support and shoulders to cry on have carried us all through.  We thank you from the bottom of our hearts. X

We would also like to  thank everyone for your generous contributions and kind words.  Watch out for future events, to help create ‘Williams room’  We are sure that much fun is still to be had and look forward to seeing you all again soon.

Love from

The Sainsburys,

News Flash

William has recovered well following his operation and is back to pre school and having a great  time! He seems to have so much more energy and his hands are much more flexible. William is fascinated that he can wiggle his fingers.:-)
The Fun Day plans are well and truly underway with so much support and generosity from friends family and the local community as far afield as Cornwall!
Raffle tickets are still for sale so please contact us if you would like to buy one (or a few!)
There will also be a themed night at the George and Dragon Pub in Tarring on 2nd December.  So please come along and show your support, whilst soaking up the atmosphere is this homely village pub.  More details to follow!
Listen out for our interview with Splash FM tomorrow between 8 - 12pm. !
Thank you all again for your continued support to Williams Fund.  We are all looking forward to seeing many old and new faces and having a great time.
Love from the Sainsburys xxxxx

Williams Operation

Well its been a tough week!  William had his shunt fitted and his Carpal tunnel released in both hands.  The operation took 3 hours in total and he slept for most of the night.  Early on Thursday morning William was sick and slightly dizzy so they took him down for a CT scan.  this showed that whilst the shunt was working well, he had over drained the fluid in his brain, and had developed a small bleed. William needed to spend the next 24 hours laying at  30 degrees so his brain would adjust to the draining. He has been on morphine, anti inflammatory and anti sickness drugs to help him though.   We were finally discharged on Sunday morning and arrived home safely in the afternoon.  William continues to improve and has returned to his cheeky self, whilst he is still recovering.  We would just like to thank everyone for your kind messages and support over the last week. It has kept us going knowing how much support we have.

Thank you!

Update

Hi all,

So here goes,  Tuesday this week William had his new hearing aids fitted. He was very unsure at first as there are a lot of sounds he has never heard before!  He cried a lot and we need to keep trying every few hours to get him used to it! We are sure that once he has overcome the strange new sounds of water running and the cat pounding down the stairs, he will come along leaps and bounds… perseverance!

We also found out on Thursday that William is now booked in at Great Ormond Street for his Carpal tunnel and Shunt operation.  It’s a lot for the little man to be going though! We are hoping to be discharged on Friday, all being well.   The Shunt is to drain the water off his brain, and Carpal tunnel to release the pressure on his median nerve so he does not wake at night in pain.

We will keep you posted on the trials of next week. And would like to thank you all again for your continued support for William.

Love

The Sainsbury’s

xxxx