Today was immunoglobulin day which went smoothly, despite realising too late that we were using the same leg as last week rather than alternating! No problems though and all done and dusted in time for a morning nap.
Otherwise, William's first ice cream all to himself was the very chocolatey highlight of the day.
Tuesday, 31 July 2007
Monday, 30 July 2007
A trip to RUH
Went to the RUH in Bath to get William's platelets rechecked. The nurse had a look for his veins and promptly called for a Registrar (as usually happens) The Registrar got the required red gloopy stuff on the second attempt but our poor William was pretty cross by then. Unfortunately, I think for the first time today he anticipated what was going to happen and started crying before they even started grabbing at his arms and legs. However his platelets are back up to 23 per whatever (normal is 250 per thingymybob) so that's an improvement from the 13 of last week.
Spoke to Nettie at GOS who confirmed that they have booked the donor for September 17th (is it too early to panic? no, I thought not). He is donating stem cells from the peripheral blood and they will get millions for William. Apparently if the donor is a good match it makes little difference how the donation is made (direct from the bone marrow or harvested from the blood) and the stem cells may engraft more quickly this way.
Think that is all the excitement for today so bye for now folks.
Spoke to Nettie at GOS who confirmed that they have booked the donor for September 17th (is it too early to panic? no, I thought not). He is donating stem cells from the peripheral blood and they will get millions for William. Apparently if the donor is a good match it makes little difference how the donation is made (direct from the bone marrow or harvested from the blood) and the stem cells may engraft more quickly this way.
Think that is all the excitement for today so bye for now folks.
Sunday, 29 July 2007
Are we spending more time blogging than doing anything else?
Cousin Ella's 2nd birthday party today and a sunny time was had by all. Although the Pass the parcel had an x large chocolate button in each layer, the flock of children that appeared (well a Hannah an Ella and a William) the moment the paper was discarded meant that Pappa was the only non child to eat his and Granma diplomatically broke hers into 3. An impressive Fifi cake and too many cheese and pineapple on sticks later we headed on a slightly lengthen journey back due to an accident.
Just had a call from GOS (7pm on a Sunday, the NHS never sleeps or has a day off (thank goodness)) so we are off tomorrow to Bath to get William's platelet level rechecked, it was 13 last week but a bit 'clumpy'?! whatever that means so we will keep you posted.
Just had a call from GOS (7pm on a Sunday, the NHS never sleeps or has a day off (thank goodness)) so we are off tomorrow to Bath to get William's platelet level rechecked, it was 13 last week but a bit 'clumpy'?! whatever that means so we will keep you posted.
Saturday, 28 July 2007
Fun things wot we have done so far..
We have had a day out a Norwood farm just up the road today. William is fearless when it comes to livestock. As other children around him were cajoled into feeding the animals William was straight in there with handfuls of feed, he does not understand that he has to hold it out on the palm of his hand but tries to feed a piece at a time as if he was feeding Gillie a biscuit at home.
After feeding animals it was time for lunch and then onto the static tractors (an old Fergy and David Brown for the Tractor fans out there) and it took some enticing to get William off it to go and say goodbye to the animals.
We have somewhat spoilt William over the summer since finding out that GOS plan to do the BMT sooner rather than later and as the date keeps rolling back we try to cram more in. He was pushed around the Royal Bath and West Show and it only took ten minutes before he had completed his Tractor Ted dvd collection (these are hidden away ready to go into GOS) by the end of the day he was a sleep clutching a new Hereford bull for his toy farm and dreaming of the livestock tents and sheds.
He had a trip on the watercress line in Hampshire with his cousin Hannah, Great Grandad and Granma and Pappa Curtis as well as us. He found it very funny when Pappa jumped off at a station to take our picture through window and we all laughed when the train in front of us broke down lengthening our journey time.
His first word was tractor well actually trackor (like his dad he is from Somerset and it is his mother who is teaching him there are two Ts in tractor) and he is mad about them but only when they are switched off. He has been on a number of tractor and trailer rides which end with him competing with the noise of the engine with his screams. We were not sure how he would react to a steam train, so it was a relief that the day ended with smiles.
We do not only take him to see farm animals, he has experienced the more exotic while in South Devon with Grandma and Grandpa Battam who have a very tiny zoo on their doorstep. Unfortunately William did not enjoy this as much, the monkeys just moved a little too quickly for his liking. Undeterred the next time we visited Grandma and Grandpa we went to Living Coast which he loved, as most of the penguins are just the right height to look him in the face. The weather was wet, very wet but this took none of the shine off the day as we waded around in wellies and flip-flops watching the penguins being fed around us.
Us Curtis’ are creatures of habit and if you ask family and friends where we go on holiday they will chorus back North Devon and if they are feeling specific they will say the coast between Braunton and Mortehoe. We have managed two long weekends away with William and his Godmother Tash and Jim and Godfather Ben and his family Bella and the children Tia and Luca. On our last trip B came up to for the night from Plymouth before driving off to Andover. That turned into a bit of a girls night in tents as I drag Ben off to listen to David Kennard (maker of William’s favourite videos).
William has developed a quite a taste for paddling, once in his wetsuit will stay in the water until the sheep come home (literally). He is quite happy to watch Daddy paddle out on his surfboard but becomes quite worried when Mummy leaves the shoreline. I’m not sure if I should be offended or just enjoy longer sessions than Cath.
No trip outside the front door would be complete without some livestock and in North Devon it’s Sheep. The Big Sheep was a great success with William once again charging forward when it came to feeding the lambs. From farm park to real farm it’s up to Morte Point for William to practice his baaing which is getting quite realistic (if you had watched Mist the Movie as many times as William you would be quite good too).
These are just a few of the things that we have got up to, to fill William's memory banks up for when he is stuck in London in September. And I have not even told you about putting a ride on tractor together in half an hour over lunchtime with baby, dog and wife all trying to help.
Back to today I have a cold and a cough and William seems a bit under the weather so we keep our fingers crossed that he fights it off.
After feeding animals it was time for lunch and then onto the static tractors (an old Fergy and David Brown for the Tractor fans out there) and it took some enticing to get William off it to go and say goodbye to the animals.
We have somewhat spoilt William over the summer since finding out that GOS plan to do the BMT sooner rather than later and as the date keeps rolling back we try to cram more in. He was pushed around the Royal Bath and West Show and it only took ten minutes before he had completed his Tractor Ted dvd collection (these are hidden away ready to go into GOS) by the end of the day he was a sleep clutching a new Hereford bull for his toy farm and dreaming of the livestock tents and sheds.
He had a trip on the watercress line in Hampshire with his cousin Hannah, Great Grandad and Granma and Pappa Curtis as well as us. He found it very funny when Pappa jumped off at a station to take our picture through window and we all laughed when the train in front of us broke down lengthening our journey time.
His first word was tractor well actually trackor (like his dad he is from Somerset and it is his mother who is teaching him there are two Ts in tractor) and he is mad about them but only when they are switched off. He has been on a number of tractor and trailer rides which end with him competing with the noise of the engine with his screams. We were not sure how he would react to a steam train, so it was a relief that the day ended with smiles.
We do not only take him to see farm animals, he has experienced the more exotic while in South Devon with Grandma and Grandpa Battam who have a very tiny zoo on their doorstep. Unfortunately William did not enjoy this as much, the monkeys just moved a little too quickly for his liking. Undeterred the next time we visited Grandma and Grandpa we went to Living Coast which he loved, as most of the penguins are just the right height to look him in the face. The weather was wet, very wet but this took none of the shine off the day as we waded around in wellies and flip-flops watching the penguins being fed around us.
Us Curtis’ are creatures of habit and if you ask family and friends where we go on holiday they will chorus back North Devon and if they are feeling specific they will say the coast between Braunton and Mortehoe. We have managed two long weekends away with William and his Godmother Tash and Jim and Godfather Ben and his family Bella and the children Tia and Luca. On our last trip B came up to for the night from Plymouth before driving off to Andover. That turned into a bit of a girls night in tents as I drag Ben off to listen to David Kennard (maker of William’s favourite videos).
William has developed a quite a taste for paddling, once in his wetsuit will stay in the water until the sheep come home (literally). He is quite happy to watch Daddy paddle out on his surfboard but becomes quite worried when Mummy leaves the shoreline. I’m not sure if I should be offended or just enjoy longer sessions than Cath.
No trip outside the front door would be complete without some livestock and in North Devon it’s Sheep. The Big Sheep was a great success with William once again charging forward when it came to feeding the lambs. From farm park to real farm it’s up to Morte Point for William to practice his baaing which is getting quite realistic (if you had watched Mist the Movie as many times as William you would be quite good too).
These are just a few of the things that we have got up to, to fill William's memory banks up for when he is stuck in London in September. And I have not even told you about putting a ride on tractor together in half an hour over lunchtime with baby, dog and wife all trying to help.
Back to today I have a cold and a cough and William seems a bit under the weather so we keep our fingers crossed that he fights it off.
Gallery
William on his very own John Deere
William at Morte Point with his favourite flock but where's Mist?
Thursday, 26 July 2007
Another day in the Big Smoke
Today saw us return to GOS (somewhat reluctantly). We managed a chest x ray without event. The ECG was more fun for William who enjoyed removing the sticky pad and crocodile clips as fast as the technician could attach them, some wriggling later a satisfactory reading had been obtained. We met Nikki, the BMT Senior Sister who answered a number of our more random questions whilst William slept cooperatively. We CAN have Gillie at home when William first comes out HOORAH! I had a tour of the unit, our future temporary residence which was interesting and saw two other happy tots also aboard the BMT rollercoaster. Rob nobly/wisely declined the tour due to his VERY (I am reliably informed) bad sore throat and squeaky voice. A strange place indeed but the rooms were not quite as small as I had feared although a bit like goldfish bowls with staff and other carers peering through windows.
Back upstairs for bloods and success this time with a bit of intuition from the nurse and a dollop of good luck as even the 'magic' light couldn't spot his veins.
Back home after collecting Gillie who had thoroughly enjoyed his stay at the big house in Braishfield with Granma and Pappa.
Back upstairs for bloods and success this time with a bit of intuition from the nurse and a dollop of good luck as even the 'magic' light couldn't spot his veins.
Back home after collecting Gillie who had thoroughly enjoyed his stay at the big house in Braishfield with Granma and Pappa.
Wednesday, 25 July 2007
Off to the big smoke
This week we have been up to GOS for 2 full days of fun tests, no thats not true the only fun one was with the play specialist.
Day one, after a crowded commuter train ride with a bleeding lip, William arrived by Taxi to get a large Latte, no that was me he had to settle for a smoothie.
A hearing test ensued with scary moving puppets and strange crackling noises which William found more Mr Punch than Kermit. We met the dietician who described William as 'well nourished' which in BMT outpatients is a compliment and something to be encouraged as the chemotherapy drugs make mouths sore and food taste odd so weight loss often follows on.
After storming our way into 'town' we found our way to Hamleys and came out with 2 more cuddlies, Hamish and Rosie, a highand cow and lamb respectively.
We went back for an echo cardiogram (an ultrasound picture of his heart) which William didn't fancy much and I believe the word 'uncooperative' may have found it's way into his notes. We had a meeting for a developmental assesment which raised no issues and a chat with the play specialist who admired the burgeoning sheep collection of one very overtired little boy.
Bloods, now thats always a tricky one, our boy likes to keep his veins well hidden and I can't say as I blame him. Some stabbing later in the sweltering cupboard that they call a treatment room we emerged without having deposited the requisite amount of the red stuff to return the next day.
to be continued........
Day one, after a crowded commuter train ride with a bleeding lip, William arrived by Taxi to get a large Latte, no that was me he had to settle for a smoothie.
A hearing test ensued with scary moving puppets and strange crackling noises which William found more Mr Punch than Kermit. We met the dietician who described William as 'well nourished' which in BMT outpatients is a compliment and something to be encouraged as the chemotherapy drugs make mouths sore and food taste odd so weight loss often follows on.
After storming our way into 'town' we found our way to Hamleys and came out with 2 more cuddlies, Hamish and Rosie, a highand cow and lamb respectively.
We went back for an echo cardiogram (an ultrasound picture of his heart) which William didn't fancy much and I believe the word 'uncooperative' may have found it's way into his notes. We had a meeting for a developmental assesment which raised no issues and a chat with the play specialist who admired the burgeoning sheep collection of one very overtired little boy.
Bloods, now thats always a tricky one, our boy likes to keep his veins well hidden and I can't say as I blame him. Some stabbing later in the sweltering cupboard that they call a treatment room we emerged without having deposited the requisite amount of the red stuff to return the next day.
to be continued........
Monday, 23 July 2007
All aboard the BMT express
We are about to embark on a Bone Marrow Transplant (BMT) for William at Great Ormond Street Hospital to cure him of Wiskott-Aldrich Syndrome (WAS) (for more info on WAS see http://www.primaryimmune.org/pubs/book_pats/e_ch07.pdf,
http://www.emedicine.com/med/topic1162.htm)
William was diagnosed with WAS when he was just 4 months old following an infection. We are fortunate that he has kept very well since then with only 2 hospital admissions but the mutation of the gene that he has is the most severe expression and he produces none of the WAS protein. Without a BMT the prognosis is very poor. We have been SO fortunate that someone has offered to donate their bone marrow and are more grateful than we can ever express for the opportunity that he is giving William.
William currently takes a daily antibiotic and we give him extra antibodies (weekly sub cut for those who like the nitty gritty) which has kept him well so far (touch wood). His ezcema is moderate and those of you who see him regularily will be familiar with the bruises that the mildest of knocks produces.
We will try and post regularly to this blog so that you all, our lovely family and friends can find out how he is doing.
http://www.emedicine.com/med/topic1162.htm)
William was diagnosed with WAS when he was just 4 months old following an infection. We are fortunate that he has kept very well since then with only 2 hospital admissions but the mutation of the gene that he has is the most severe expression and he produces none of the WAS protein. Without a BMT the prognosis is very poor. We have been SO fortunate that someone has offered to donate their bone marrow and are more grateful than we can ever express for the opportunity that he is giving William.
William currently takes a daily antibiotic and we give him extra antibodies (weekly sub cut for those who like the nitty gritty) which has kept him well so far (touch wood). His ezcema is moderate and those of you who see him regularily will be familiar with the bruises that the mildest of knocks produces.
We will try and post regularly to this blog so that you all, our lovely family and friends can find out how he is doing.
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