Well it’s Sunday and I’m back sitting in the kitchen back in Wiltshire once again Gillie gently snoring on the couch (route marching with Grandma does take it out of a dog).
Before you get to hear about William and Cath I would just like to say a big thank you to the nurses there will be other thank yous later (including one to Grandma Curtis who probably already has the Iron out although I only dropped William’s and Cath’s washing off with her at 8.00 (its now 10.49)) (these brackets are catching). Today there were only three nurses running the ward, here come some more brackets (normally five nurses plus students and health care assistants) and they did a great job, as all the children on Fox need a lot of care throughout their treatments as well as their parents who the nurses also support (when things are bad try stopping them force feeding you cups of tea). I promise no more brackets its getting beyond a joke. I would also like to praise the Gentleman and he is a gentleman who cleans Fox ward during the week he take pride in his work and always has away of raising a smile with the children and he could teach the female cleaners a thing or two starting with how a mop works.
Right today well I arrive nice and early as I stayed in the Parent’s Hotel across the street to find both William and Cath asleep. Normally we would be finishing breakfast on a Sunday by 7.20 so to find both of them asleep was a little bit of a shock. I walked down to Starbucks and brought coffees and return to find Cath awake ready to report on the night, William had slept through the night but had called out in pain in his sleep throughout. William came too around eight o’clock and whilst sitting on mummy leaked all over her and himself and the bed. So Cath jumped in the shower and I did my best to clean up. Next to come was weighing so a striped William was guided to the scales with his shadow better know as his pump stand as he still had four hours to go on his milk feed. Then the floor and scales where a different colour as what was going down his N G tube was coming straight out the other end. The poor boy has been into double figures with nappy changes today and this has taken it out of him between sleeping he has spent a lot of time on laps working his way through his DVD collection. While Cath was out taking the London air the Doctor came round and checked William’s rash, which is no worst or better. The Doctor has written William up for some I V fluids to replace what his body has expelled today. As you would expect he has had little interest in food today but we did have breakfast with mummy on one side of the window and William on his side, which he seemed to enjoy although he only managed two bites of toast (we can not eat in the room, sorry for the brackets). Avery sleepy boy was bathed early and in his cot ready to be hooked up to his pump stand once again. Hopefully he will have a little more energy with the return of Grandma Battam tomorrow for the day.
Thank you time I would like to thank everyone who keep sending us messages via the blog and the post (William’s current Address is Master W. Curtis, Fox Ward, Level 5, Great Ormond Street Children’s Hospital, Great Ormond street, London. WC1N 3JH. U.K.). I would like to thank also those behind the scenes like my parents who are looking after Gillie while I am in London, Andy for once again getting our car though it’s MOT and Uncle Nick for getting the company he works for to support Jeans for Genes day. What is Jeans for Genes day I hear you cry well it’s your chance to be a Hero “Denimise the cheer leader and save someone’s world” or you could pay to wear your jeans to work or school on Friday what ever works for you. Thank you too all those filling Cath’s social diary with lunches, it keeps her from under my feet at the weekends. Also I must thank Cath’s parents for spending Nick’s inheritance on train fares and hotels when I can’t be there. (Final brackets, please forgive poor spelling and grammer it’s my West Country Genes coming though and my Editer is in London.).
Normal service will return with Cath soon
Sunday, 30 September 2007
A pack of choclate buttons and a pack of sheep dogs
Friday +1
His temperature has come down from yesterday and has been more or less steady today. Still not TPN but that’s a good thing, he has had more milk feeds today and overnight too. He is still not eating but Daddy managed to entice him to eat 20 chocolate buttons (whilst I was out!) and drink some milk. He is currently having some red blood cells to top him up a bit. This is quite usual and he may need more or more platelets over the coming days. He has been very subdued today and has slept a bit more than usual. The dogs of Windcutter Down raised a much needed smile this afternoon (that’s Greg, Swift, Gail, Fern and Ernie for those of you less familiar than us, and I doubt there are many more familiar than us with those sheepdogs, save perhaps David Kennard himself). I found a wireless internet café, just down the street so will be getting in the habit of popping there every so often. Saw the Consultant but nothing exciting to report. It’s a waiting game now. We’ve spent hours (I exaggerate not (for a change (ooh I do like my brackets!))) sorting out various TV/DVD/Video combinations and finally got everything working only yesterday or so we thought, found that having been able to watch Tractor Ted successfully ALL day, Rob went to put a film on for us this evening and it refused to play (which is what happened last night too) so we have been sitting on the bed, wearing plastic aprons watching Confetti on the laptop (with it balanced on a pillow so that the film wouldn’t jump?). I would recommend the film, it made us laugh but I’m not sure about the plastic aprons! What fun we are having day +1 is almost over and my bracket quota is full.
Saturday Day +2
William was very sick last night mostly over Mummy, which was nice and necessitated a midnight shower! He now has an anti sickness patch (like a nicotine patch!) tucked behind his ear. I had coffee this morning with Annie, a friend of my Aunts (Phyllis) who trained and worked at GOS. She was really interesting to talk to, her husband also had a BMT some years ago and it was quite diverting to meet someone new. William was sick again late afternoon so that anti sickness patch worked well then. He played well today though and seemed to have more energy. He is having his milk very slowly continuously overnight and tomorrow morning so 18 hours in all. Hopefully that will mean that it will stay inside for a bit longer and be extra nourishing. He has a red rash over his torso that is a side effect of the Treosulfan but it is not too itchy and he had some Piriton to calm it down. His tummy was a bit swollen so they called a doctor to check that it wasn’t fluid. The doctor who came is not usually on the ward and works with Prof Thrasher and Dr Siobhan Burns on the WAS gene therapy research. I think that he was quite interested to meet a real WAS boy during transplant! We told him how excited we are about the work that they are doing for the future to help other WAS boys. The post came last night about 8pm and we were excited to receive some more cards and gifts so thank you.
His temperature has come down from yesterday and has been more or less steady today. Still not TPN but that’s a good thing, he has had more milk feeds today and overnight too. He is still not eating but Daddy managed to entice him to eat 20 chocolate buttons (whilst I was out!) and drink some milk. He is currently having some red blood cells to top him up a bit. This is quite usual and he may need more or more platelets over the coming days. He has been very subdued today and has slept a bit more than usual. The dogs of Windcutter Down raised a much needed smile this afternoon (that’s Greg, Swift, Gail, Fern and Ernie for those of you less familiar than us, and I doubt there are many more familiar than us with those sheepdogs, save perhaps David Kennard himself). I found a wireless internet café, just down the street so will be getting in the habit of popping there every so often. Saw the Consultant but nothing exciting to report. It’s a waiting game now. We’ve spent hours (I exaggerate not (for a change (ooh I do like my brackets!))) sorting out various TV/DVD/Video combinations and finally got everything working only yesterday or so we thought, found that having been able to watch Tractor Ted successfully ALL day, Rob went to put a film on for us this evening and it refused to play (which is what happened last night too) so we have been sitting on the bed, wearing plastic aprons watching Confetti on the laptop (with it balanced on a pillow so that the film wouldn’t jump?). I would recommend the film, it made us laugh but I’m not sure about the plastic aprons! What fun we are having day +1 is almost over and my bracket quota is full.
Saturday Day +2
William was very sick last night mostly over Mummy, which was nice and necessitated a midnight shower! He now has an anti sickness patch (like a nicotine patch!) tucked behind his ear. I had coffee this morning with Annie, a friend of my Aunts (Phyllis) who trained and worked at GOS. She was really interesting to talk to, her husband also had a BMT some years ago and it was quite diverting to meet someone new. William was sick again late afternoon so that anti sickness patch worked well then. He played well today though and seemed to have more energy. He is having his milk very slowly continuously overnight and tomorrow morning so 18 hours in all. Hopefully that will mean that it will stay inside for a bit longer and be extra nourishing. He has a red rash over his torso that is a side effect of the Treosulfan but it is not too itchy and he had some Piriton to calm it down. His tummy was a bit swollen so they called a doctor to check that it wasn’t fluid. The doctor who came is not usually on the ward and works with Prof Thrasher and Dr Siobhan Burns on the WAS gene therapy research. I think that he was quite interested to meet a real WAS boy during transplant! We told him how excited we are about the work that they are doing for the future to help other WAS boys. The post came last night about 8pm and we were excited to receive some more cards and gifts so thank you.
Friday, 28 September 2007
Here are my most recent ramblings...
Monday
William has been rather sick to start and finish the day poor little man but has been remarkably cheerful. I escaped for a very enjoyable lunch with Jo and Lisa, thanks SO much girls! Unfortunately when he was sick this evening (on Grandma) he brought up the end of his NG tube so they had to pull it out. He has had another one put in already for his overnight milk so at least he will get all the nutrients that he needs. He has only eaten yoghurt, 1 ½ cream crackers and 6 mini jaffa cakes all day. He was asleep before he was sick and all the excitement of the NG tube, the cleaning up and clothes changing meant that he was then wide awake and a rather overtired and hyperactive William has finally gone to sleep at 10.45. He also had his dressing on his Hickman line changed earlier which was rather a sticky, wriggly experience but the should last a week, phew. He had his penultimate dose of the Fludarabine without event and that was the only thing on the list for today apart from the numerous usual oral (well NG) meds.
Tuesday
William woke in the night with a very sore bottom but they gave him some pain relief and otherwise he slept through until 8 (not altogether surprising considering the antics of last night). He woke bright and breezy and even had a quarter of a piece of toast and some milk for breakfast. Unfortunately he was sick after his lunch nutritionally balanced lunch of jelly and peeled grapes (yes even the grapes need their skins off) will be having more anti sickness meds from now on. His NG tube came out again AAGGH! His platelets are back down to 10 so they won’t put another one in until he has had a transfusion (due an hour ago!) in case it scratches as it goes in and he bleeds. So we have a fun and late evening ahead of us. He is asleep now after being disturbed by a nurse at the crucial moment who woke him up entirely and it took us another hour to convince him to sleep. Fortunately Mum was here so we took turns so that at least I have eaten. He will have his platelets whilst he sleeps (fingers crossed). Apparently the affects of the chemo really kick in after about 10 days from the end (today!!) so that’s something we are really looking forward to. The consultants and entourage breezed in today but we are not particularly interesting on the BMT scale of things so they left quickly and to be honest lets hope we remain pretty uninteresting!! Had a lovely chat to Hannah (almost 6) and Ella (2 and a bit) and Nicky (even older than me!), Ella refuses to call me Auntie Cath preferring the more informal Cath which is really cute and makes me smile. Hannah is so curious and always full of imaginative questions. She was most impressed today that William has a new toothbrush EVERY day ((sore mouths are common and we use mouthwash on sponges and brush four times a day) fortunately W loves this bit at the moment). That’s all for the moment I shall go and get my pyjamas on and then you can be sure that the nurses will turn up!
Wednesday –1
And sure enough they did, can’t remember why but it was all a bit stressful and I started panicking that he was getting the wrong medicines or something. It is so hard to trust the nursing staff with William but I have to because that’s the way it is and even when they tell me what they are giving him I’m sometimes none the wiser. It was an awful nights sleep for me, the machines kept beeping one after the other and at midnight his platelets finished so I had to wake him up for the torture of having another NG tube put in. Fortunately it was over very quickly and he was so tired he settled almost straight back down. Today I was exhausted first thing but had a late morning sleep when William did and Mum did the provisions run! I thought today would be quieter medicine wise but as well as the usual suspects there are 2 new ones, one is a two hour infusion twice a day and the other a one hour infusion twice a day so that is 6 hours with tubing plus extra for the flushes! We have watched a significant amount of Tractor Ted and spent a happy 10 minutes teaching Grandma and 2 of the nurses the names of Williams cuddly collection (in no particular order, so as not to cause offence they are Lamby, Hamish, Cuddly Gillie, Jess, Tex, Woolly, Rosie, Minty, Smudge and Smoky for those of you who are interested). More meds due later so I’m doubtful how restful this night will be too. There has been ‘discussions’ about starting W on TPN, which is a way of feeding him IV, apparently the doctor thinks that we should but not the dietician or the nursing staff. I had provisionally agreed although when I asked the doctor is there were any negatives he omitted to tell me that it would mean that W is hooked up 24/7! There is probably a better way at this stage introducing daytime milk feeds through his NG tube as well as the night ones because this will keep his gut working. His weight is not really dropping and although he is not really eating he has been drinking and they poured a bit extra in today as well so we shall see what actually happens when the dietician has her say in the morning.
It’s easy to lose sight of the bigger picture and get caught up in the details of the treatment but I just want to take a moment to say that I have been thinking about and praying for the donor today as he plays his pivotal role in this whole business. He is giving William a chance that I cannot and from tomorrow, whatever happens in Williams’s life he will always be a part of it. Without him, none of this would be possible and to not be able to give William this chance would break my heart.
Thursday Day 0
Go stem cells GO GO GOOOOOO!
It’s done. All 318ml of stem cells are in his system, he got a bit of a temperature and a bit breathless pale and chilly too towards the end of the 3 hours so they gave him some paracetamol and the doctor came and said ‘I think he is probably going to be alright’ which we found very reassuring. The donor was very generous with his stem cells and they have frozen a similar quantity just in case?! We had a nurse with us for the whole infusion just in case the bag springs a leak and we sit there and watch them spill all over the floor so that she could do a little Dutch boy impression or something! We managed to convince William to watch a proper film rather than tractor Ted that we thought the nurse might enjoy more. He has been very tired today and really fighting it, I think he didn’t want to miss out on seeing Daddy, especially as he was laden down with new toys, DVD’s and books.
It is extraordinary to think about these magic cells and what we are hoping and praying that they will do in their new home (William). Williams white blood count was less that 0.1 this morning and the normal range is 4.5 – 13.5 so all those drugs have done their bit (the white blood cells are the ones that fight infection and give immunity for those of you either not paying attention in Biology or for whom it is so long ago (I fall broadly into both categories). I think it will be between 10 and 21 days before he starts to make new cells. It is a momentous day but difficult to know how to mark it. I think that later Rob and I will try and put together a thank you letter to the donor, which they will forward to him. We have to be vague about the details to protect the anonymity of it all but hope that will be able to convey somehow what his gift means to us all. Holly another patient on the ward had her transplant on her second birthday, which seems so fitting and full of promise. Lucy, next door is feeling a bit poorly as she is about 10 days post transplant so please say a prayer for her and all the children here if you are that way inclined. I think that the hardest times still lie ahead here.William went to bed about 5.15 so we will see how this evening plays out. Again he has not really eaten anything but they gave him a day milk feed and he is having more later and then the TPN overnight too.
William has been rather sick to start and finish the day poor little man but has been remarkably cheerful. I escaped for a very enjoyable lunch with Jo and Lisa, thanks SO much girls! Unfortunately when he was sick this evening (on Grandma) he brought up the end of his NG tube so they had to pull it out. He has had another one put in already for his overnight milk so at least he will get all the nutrients that he needs. He has only eaten yoghurt, 1 ½ cream crackers and 6 mini jaffa cakes all day. He was asleep before he was sick and all the excitement of the NG tube, the cleaning up and clothes changing meant that he was then wide awake and a rather overtired and hyperactive William has finally gone to sleep at 10.45. He also had his dressing on his Hickman line changed earlier which was rather a sticky, wriggly experience but the should last a week, phew. He had his penultimate dose of the Fludarabine without event and that was the only thing on the list for today apart from the numerous usual oral (well NG) meds.
Tuesday
William woke in the night with a very sore bottom but they gave him some pain relief and otherwise he slept through until 8 (not altogether surprising considering the antics of last night). He woke bright and breezy and even had a quarter of a piece of toast and some milk for breakfast. Unfortunately he was sick after his lunch nutritionally balanced lunch of jelly and peeled grapes (yes even the grapes need their skins off) will be having more anti sickness meds from now on. His NG tube came out again AAGGH! His platelets are back down to 10 so they won’t put another one in until he has had a transfusion (due an hour ago!) in case it scratches as it goes in and he bleeds. So we have a fun and late evening ahead of us. He is asleep now after being disturbed by a nurse at the crucial moment who woke him up entirely and it took us another hour to convince him to sleep. Fortunately Mum was here so we took turns so that at least I have eaten. He will have his platelets whilst he sleeps (fingers crossed). Apparently the affects of the chemo really kick in after about 10 days from the end (today!!) so that’s something we are really looking forward to. The consultants and entourage breezed in today but we are not particularly interesting on the BMT scale of things so they left quickly and to be honest lets hope we remain pretty uninteresting!! Had a lovely chat to Hannah (almost 6) and Ella (2 and a bit) and Nicky (even older than me!), Ella refuses to call me Auntie Cath preferring the more informal Cath which is really cute and makes me smile. Hannah is so curious and always full of imaginative questions. She was most impressed today that William has a new toothbrush EVERY day ((sore mouths are common and we use mouthwash on sponges and brush four times a day) fortunately W loves this bit at the moment). That’s all for the moment I shall go and get my pyjamas on and then you can be sure that the nurses will turn up!
Wednesday –1
And sure enough they did, can’t remember why but it was all a bit stressful and I started panicking that he was getting the wrong medicines or something. It is so hard to trust the nursing staff with William but I have to because that’s the way it is and even when they tell me what they are giving him I’m sometimes none the wiser. It was an awful nights sleep for me, the machines kept beeping one after the other and at midnight his platelets finished so I had to wake him up for the torture of having another NG tube put in. Fortunately it was over very quickly and he was so tired he settled almost straight back down. Today I was exhausted first thing but had a late morning sleep when William did and Mum did the provisions run! I thought today would be quieter medicine wise but as well as the usual suspects there are 2 new ones, one is a two hour infusion twice a day and the other a one hour infusion twice a day so that is 6 hours with tubing plus extra for the flushes! We have watched a significant amount of Tractor Ted and spent a happy 10 minutes teaching Grandma and 2 of the nurses the names of Williams cuddly collection (in no particular order, so as not to cause offence they are Lamby, Hamish, Cuddly Gillie, Jess, Tex, Woolly, Rosie, Minty, Smudge and Smoky for those of you who are interested). More meds due later so I’m doubtful how restful this night will be too. There has been ‘discussions’ about starting W on TPN, which is a way of feeding him IV, apparently the doctor thinks that we should but not the dietician or the nursing staff. I had provisionally agreed although when I asked the doctor is there were any negatives he omitted to tell me that it would mean that W is hooked up 24/7! There is probably a better way at this stage introducing daytime milk feeds through his NG tube as well as the night ones because this will keep his gut working. His weight is not really dropping and although he is not really eating he has been drinking and they poured a bit extra in today as well so we shall see what actually happens when the dietician has her say in the morning.
It’s easy to lose sight of the bigger picture and get caught up in the details of the treatment but I just want to take a moment to say that I have been thinking about and praying for the donor today as he plays his pivotal role in this whole business. He is giving William a chance that I cannot and from tomorrow, whatever happens in Williams’s life he will always be a part of it. Without him, none of this would be possible and to not be able to give William this chance would break my heart.
Thursday Day 0
Go stem cells GO GO GOOOOOO!
It’s done. All 318ml of stem cells are in his system, he got a bit of a temperature and a bit breathless pale and chilly too towards the end of the 3 hours so they gave him some paracetamol and the doctor came and said ‘I think he is probably going to be alright’ which we found very reassuring. The donor was very generous with his stem cells and they have frozen a similar quantity just in case?! We had a nurse with us for the whole infusion just in case the bag springs a leak and we sit there and watch them spill all over the floor so that she could do a little Dutch boy impression or something! We managed to convince William to watch a proper film rather than tractor Ted that we thought the nurse might enjoy more. He has been very tired today and really fighting it, I think he didn’t want to miss out on seeing Daddy, especially as he was laden down with new toys, DVD’s and books.
It is extraordinary to think about these magic cells and what we are hoping and praying that they will do in their new home (William). Williams white blood count was less that 0.1 this morning and the normal range is 4.5 – 13.5 so all those drugs have done their bit (the white blood cells are the ones that fight infection and give immunity for those of you either not paying attention in Biology or for whom it is so long ago (I fall broadly into both categories). I think it will be between 10 and 21 days before he starts to make new cells. It is a momentous day but difficult to know how to mark it. I think that later Rob and I will try and put together a thank you letter to the donor, which they will forward to him. We have to be vague about the details to protect the anonymity of it all but hope that will be able to convey somehow what his gift means to us all. Holly another patient on the ward had her transplant on her second birthday, which seems so fitting and full of promise. Lucy, next door is feeling a bit poorly as she is about 10 days post transplant so please say a prayer for her and all the children here if you are that way inclined. I think that the hardest times still lie ahead here.William went to bed about 5.15 so we will see how this evening plays out. Again he has not really eaten anything but they gave him a day milk feed and he is having more later and then the TPN overnight too.
Monday, 24 September 2007
109.6 miles and 2hours and 20 minutes
Sunday
109.6 miles and 2hrs 20mins is the distance and time by road between the computer I’m sitting at in our kitchen in Wiltshire and William and Catherine in G O S H in London. These figures are from the AA route planner I think it might take a little longer during rush hour. Today was my last visit until day 0 (BMT Thursday) I would like to thank South West trains for the shorting of my day with the family by an Hour and a half so they could dig up the line.
Once I finally made it to G O S H it was to find William and Cath watching Tractor Ted on the Laptop kindly sponsored by The Hairy Pot Plant Company check them out ideal gifts for those with and without green fingers. Those of you, who know William well, will know him as a busy little chap always on the move. Today and yesterday the treatment has begun to take its toll and all he wants to do is sit on a lap and watch D V Ds. He had the last of his Campath today and was hooked up from 11.30 till 5.30 hopefully it should be a shorter time tomorrow with the drips.
As Cath as mentioned William goes in to Green tonight so to break us in to it he had his meals from the green kitchen today. The rules are hot food must be eaten within an hour and cold food within four hours if not eaten it goes in the bin, so we had to keep William awake to make sure he ate something at lunchtime. Not that he as much of an appetite the only thing he really ate today was a yogurt (from Somerset) and some chocolate buttons sent up by Hannah (brought with her pocket money).
William had his final trip to the playroom this morning we built a train track and played for a little while. He will not be back there until his white blood cells reach a magic number probably in a months time. His final taste of freedom was to walk me to the Nurses station this evening from now on he does not leave his room.
Those of you who visited Cath and I when we lived on Moor Court Farm may remember during Foot and Mouth the bio security you had to go through. Arriving at the farm gate and having to get out of your car and wash your shoes and then drive your car over a disinfectant mat before driving down to the house a bit of a hassle specially if we where on our way back from the pub.
Now that Williams in Green this is the bio security we go through before we can hug him. On entering the unit you go in to the air lock a double door set up one side normal air the other filtered air. In the air lock you wash your hands above the wrists no watches can be worn first you uses soap then an alcohol gel. Outside William’s room is a cupboard with draws in. In one of the draws are plastic aprons because you had to open the draw you need to use the alcohol gel on the wall by the door before you go into the room. Once in the room you wash your hands again with soap and reapply the alcohol gel but you have forgot you bottle of water its sitting out on the cupboard so you remove the apron put it in the bin go back out of the room put on another apron and clean your hands all over again. Just in case William touches the bottle you now clean it with an alcohol wipe. This will reduce the risk of infection but we have been warned William will get an infection at some point.
Tomorrow or today as the clock on the computer now says 00.10 William has Grandma Battam to look forward to no doubt loaded down with goodies so Cath will have the wipes ready and Cath is off to lunch with Jo and Lisa. I’m off to my bed as Gillie will want walking in a couple of hours and Cath will post a new message when she can. Hope the spelling and grammar makes sense.
Rob.
PSPlease take my wife out to lunch she needs to leave the room at least once a day thank you
109.6 miles and 2hrs 20mins is the distance and time by road between the computer I’m sitting at in our kitchen in Wiltshire and William and Catherine in G O S H in London. These figures are from the AA route planner I think it might take a little longer during rush hour. Today was my last visit until day 0 (BMT Thursday) I would like to thank South West trains for the shorting of my day with the family by an Hour and a half so they could dig up the line.
Once I finally made it to G O S H it was to find William and Cath watching Tractor Ted on the Laptop kindly sponsored by The Hairy Pot Plant Company check them out ideal gifts for those with and without green fingers. Those of you, who know William well, will know him as a busy little chap always on the move. Today and yesterday the treatment has begun to take its toll and all he wants to do is sit on a lap and watch D V Ds. He had the last of his Campath today and was hooked up from 11.30 till 5.30 hopefully it should be a shorter time tomorrow with the drips.
As Cath as mentioned William goes in to Green tonight so to break us in to it he had his meals from the green kitchen today. The rules are hot food must be eaten within an hour and cold food within four hours if not eaten it goes in the bin, so we had to keep William awake to make sure he ate something at lunchtime. Not that he as much of an appetite the only thing he really ate today was a yogurt (from Somerset) and some chocolate buttons sent up by Hannah (brought with her pocket money).
William had his final trip to the playroom this morning we built a train track and played for a little while. He will not be back there until his white blood cells reach a magic number probably in a months time. His final taste of freedom was to walk me to the Nurses station this evening from now on he does not leave his room.
Those of you who visited Cath and I when we lived on Moor Court Farm may remember during Foot and Mouth the bio security you had to go through. Arriving at the farm gate and having to get out of your car and wash your shoes and then drive your car over a disinfectant mat before driving down to the house a bit of a hassle specially if we where on our way back from the pub.
Now that Williams in Green this is the bio security we go through before we can hug him. On entering the unit you go in to the air lock a double door set up one side normal air the other filtered air. In the air lock you wash your hands above the wrists no watches can be worn first you uses soap then an alcohol gel. Outside William’s room is a cupboard with draws in. In one of the draws are plastic aprons because you had to open the draw you need to use the alcohol gel on the wall by the door before you go into the room. Once in the room you wash your hands again with soap and reapply the alcohol gel but you have forgot you bottle of water its sitting out on the cupboard so you remove the apron put it in the bin go back out of the room put on another apron and clean your hands all over again. Just in case William touches the bottle you now clean it with an alcohol wipe. This will reduce the risk of infection but we have been warned William will get an infection at some point.
Tomorrow or today as the clock on the computer now says 00.10 William has Grandma Battam to look forward to no doubt loaded down with goodies so Cath will have the wipes ready and Cath is off to lunch with Jo and Lisa. I’m off to my bed as Gillie will want walking in a couple of hours and Cath will post a new message when she can. Hope the spelling and grammar makes sense.
Rob.
PSPlease take my wife out to lunch she needs to leave the room at least once a day thank you
Sunday, 23 September 2007
How hard it is blogging in London
Friday
Well as you know I made it to Starbuck and got the blog updated. Hoorah. Today has been pretty frantic and there is still stuff to happen. William had a very red ear this morning, which the consultant thinks is a small localised tissue infection and he will be having IV antibiotics when they get delivered later on. The swelling has since reduced considerably and the colour improved, he is already on several antibiotics and anti inflammatories, which may have helped. William had his Campath again today and once again as the flush was going through he came up in a few itchy blister like patches despite having had extra steroids to reduce this likelihood of this happening. Anyway they gave him some more antihistamines and we popped some hydrocortisone cream on and they soon improved. William had his Fludarabine and Treosulfan today, which went in smoothly enough. The main issue at the moment is stopping him getting tangled up in the tubing and chasing after him with the IV pole (which has 5 wheels, that impressed Hannah!) He went to bed at his usual time and is currently sleeping through a milk feed that they are giving him through his NG tube straight into his tummy. They gave him some water this way this afternoon and I think it filled him up so he didn’t want his tea. He needs to get a lot of fluids to protect his kidneys and this is the usual way that they help us to achieve our fluid target (I haven’t had one of them since my University days and then the fluid wasn’t milk or water!)
These are the serious drugs so today was a bit of a milestone, there really isn’t any going back now (not that it would be an option anyway) and we have very little idea what the next few days and weeks will hold for him.
Spoke to the dietician today, who will help us to keep William ‘well nourished’ and also the ‘Green’ kitchen lady. William will be on ‘Green’ food from Sunday now (from the special kitchen) and he can get kit kats and cakes and make special requests but I haven’t told him that bit yet or he will just be ordering puddings!
It was great to have Grandma here today, that extra pair of hands is invaluable. There is a fairly constant stream of nurses in and out and a considerable amount of prodding. The time really does fly by. William is still to have his antibiotics and his IV immunoglobulin this evening (this replaces the sub cut that we were doing at home and lasts three weeks) and I am trying for an early night. There was a small debacle with a couple of nurses and several fluid bags which woke W last night and a very soggy nappy that had to be changed so it was quite a late night by the time he finally got back to sleep. Haven’t seen the night shift staff yet so I expect they will pitch up as soon as I get my pyjamas on!
BFN Catherine xxx
Saturday
After a very disturbed night we were very happy to see Daddy this morning and he brought with him lots of cards and pressies. So thank you all. William has a new cuddly who looks just like Gillie and more tractor teds so that will help to ring the changes and some interesting new books too. Today has been busy with more doses of the Campath, the Treosulfan and the Fludarabine. His ear is very much less swollen and discoloured and he had no reaction to the Campath today, which is great. I had a lovely break with Tasha who treated me to a delicious lunch and we had a great chat and wandered around the local area a bit so that I can get my bearings and we now have a secret stash of Divine chocolate! Popped down to update the blog but of course there is nowhere to stick the memory stick in the hospital computers so I will try and think up another plan but will pop for a coffee tomorrow cos Daddy is coming back (hoorah!) Not much else, he is having a special milk feed again tonight but they are going to put it in a bit quicker because yesterday he was full up at breakfast time so that may help otherwise I am worried that he will get into a viscous circle of not eating and needing more milk feed overnight then not being hungry, you get the picture. He was much closer to his fluid target today though.
Well as you know I made it to Starbuck and got the blog updated. Hoorah. Today has been pretty frantic and there is still stuff to happen. William had a very red ear this morning, which the consultant thinks is a small localised tissue infection and he will be having IV antibiotics when they get delivered later on. The swelling has since reduced considerably and the colour improved, he is already on several antibiotics and anti inflammatories, which may have helped. William had his Campath again today and once again as the flush was going through he came up in a few itchy blister like patches despite having had extra steroids to reduce this likelihood of this happening. Anyway they gave him some more antihistamines and we popped some hydrocortisone cream on and they soon improved. William had his Fludarabine and Treosulfan today, which went in smoothly enough. The main issue at the moment is stopping him getting tangled up in the tubing and chasing after him with the IV pole (which has 5 wheels, that impressed Hannah!) He went to bed at his usual time and is currently sleeping through a milk feed that they are giving him through his NG tube straight into his tummy. They gave him some water this way this afternoon and I think it filled him up so he didn’t want his tea. He needs to get a lot of fluids to protect his kidneys and this is the usual way that they help us to achieve our fluid target (I haven’t had one of them since my University days and then the fluid wasn’t milk or water!)
These are the serious drugs so today was a bit of a milestone, there really isn’t any going back now (not that it would be an option anyway) and we have very little idea what the next few days and weeks will hold for him.
Spoke to the dietician today, who will help us to keep William ‘well nourished’ and also the ‘Green’ kitchen lady. William will be on ‘Green’ food from Sunday now (from the special kitchen) and he can get kit kats and cakes and make special requests but I haven’t told him that bit yet or he will just be ordering puddings!
It was great to have Grandma here today, that extra pair of hands is invaluable. There is a fairly constant stream of nurses in and out and a considerable amount of prodding. The time really does fly by. William is still to have his antibiotics and his IV immunoglobulin this evening (this replaces the sub cut that we were doing at home and lasts three weeks) and I am trying for an early night. There was a small debacle with a couple of nurses and several fluid bags which woke W last night and a very soggy nappy that had to be changed so it was quite a late night by the time he finally got back to sleep. Haven’t seen the night shift staff yet so I expect they will pitch up as soon as I get my pyjamas on!
BFN Catherine xxx
Saturday
After a very disturbed night we were very happy to see Daddy this morning and he brought with him lots of cards and pressies. So thank you all. William has a new cuddly who looks just like Gillie and more tractor teds so that will help to ring the changes and some interesting new books too. Today has been busy with more doses of the Campath, the Treosulfan and the Fludarabine. His ear is very much less swollen and discoloured and he had no reaction to the Campath today, which is great. I had a lovely break with Tasha who treated me to a delicious lunch and we had a great chat and wandered around the local area a bit so that I can get my bearings and we now have a secret stash of Divine chocolate! Popped down to update the blog but of course there is nowhere to stick the memory stick in the hospital computers so I will try and think up another plan but will pop for a coffee tomorrow cos Daddy is coming back (hoorah!) Not much else, he is having a special milk feed again tonight but they are going to put it in a bit quicker because yesterday he was full up at breakfast time so that may help otherwise I am worried that he will get into a viscous circle of not eating and needing more milk feed overnight then not being hungry, you get the picture. He was much closer to his fluid target today though.
Friday, 21 September 2007
Hi everyone!
We’re here!
We arrived in good time under the safe care of Di Gibb who relieved the pressure by driving us into the city. We find ourselves in room 3, which is very reasonably sized (will I still think that in a few weeks?) with a bathroom, window to the outside world a bed for me and a cot for William and a chair for Daddy (or Grandma in due course).
William had a Canula (a little valve that goes into a vein) fitted so that they can take some bloods and give him a platelet transfusion prior to the surgery tomorrow. So we put him down for a snooze, minutes later we spotted an alarming pool of blood on the sheet to find that his canula (having not been terribly well secured had fallen out). No damage done, just the trauma of having to find a vein again. The doctor (somewhat reluctantly, I fear) returned and was unable to find a vein despite some stabbing so Rob, William and I abandoned ship to head for Waitrose (conveniently just a 5 minute walk away, ready meals galore!) to get some lunch (btw it was about 5 by then!!) So we had a picnic lunch/tea in Brunswick Place and with dragging feet took ourselves back up to Fox Ward.
Another Doctor came, there were tears and she fled having been unsuccessful talking of the need for a special vein hunting light…3 hours (I exaggerate a little, but not a lot) later, her shift presumably over another Doctor pitches up with a small torch (?!) which he doesn’t use and successfully finds a vein!! So all fitted up the platelets are transfused some considerable time later and fortunately William manages to sleep for the most part and we finally finish around 12.30am.
Tuesday, Tubes and Lines
Awoke at 6 for Williams pre op breakfast. There was much deliberation and speculation about our position on the theatre list but nothing to eat after brekkies and then water until 10, then nothing! Aahh! However his platelet have risen spectacularly to over 250 from the 16 of yesterday due to the transfusion, which is great. The Consultant breezed through with his entourage who all thought William looked great (in so many ways!). IV fluids worked marvellously to prevent hungry and grumpy toddler and W sat contentedly watching Tractor Ted on my laptop (thanks HPPC!) which (Hoorah) I am allowed in the room but have no internet access (boo) so am just talking to myself until I venture into the world of internet cafes and the like! (No video in the room, no way of fitting our new super cheap DVD player to the TV and bad reception! Next door has a flat screen TV, no really, someone donated them to the ward but the rooms aren’t usually empty for long enough to get anyone to fit them) We do have phone, (hoorah) but have to whisper in the evening so that I don’t wake W. The number is 020 7762 6251 if anyone wants a chat! William went to Theatre at 2 and fell asleep in my arms. We went back to the room for a meeting with ward supreme Nikki, who only managed to get to us about 5 minutes before we went back to collect W, so meeting postponed. From previous experience I was expecting to be greeted by a distraught William but he was contentedly asleep and we returned to our room. He has had a Hickman/Central line fitted and a Nasal Gastric (NG) tube fitted). The line gives semi permanent access to his veins for blood tests and certain medicines. He is likely to have it for about 6 months. The NG tubs goes down his nose and into his tummy and he can have certain medicines through it and if he goes off his food can get special fortifying milk feeds through it, he may go home with it. William slept on so Nikki returned and went through the procedures and protocol with us again and I signed the consents. We were able to clarify lots of details with her and she did make BMT sound quite easy (!?!) and she should know because she has been here since the first bone marrow transplant.
W had IV fluids overnight and now they weigh and examine his nappies (nice job!) and we have to record everything that he eats and drinks. His sleep was a bit disturbed by the frequent ‘obs’ (((observations – blood pressure (the cuff always wakes him up and in the day he won’t keep still and then it doesn’t work so we are trying to bribe him with chocolate!) pulse, saturation (not sure what that is!?) and temperature))) (have I overdone the brackets?) It has been a very hard day and at times it seemed that nothing was going quite right but all’s well that ends well and I am left feeling hopeful.
Wednesday
W was sick after his rice crispies this morning when I tried to give him his (already numerous) medicines orally. One of them seems to be more than a bit yucky so we will just do one orally to keep the habit up and put the others through the tube. W had his pre Campath meds this morning, which involved paracetamol and piriton in preparation for the Campath, which he received over several hours today. The Campath will break down the T and B cells but at the moment can’t really explain why that’s a good thing. This is such a complicated procedure. We really want and need to understand it because W can’t, but there is just so much going on and it’s all so alien. The Campath isn’t chemo as I had originally thought, the chemo drugs are the Treosulfan and the Fludarabine, which start on Friday and really do the business. They were expecting a reaction from the Campath (hence the pre meds) today but W managed to sail through with only a mild temperature, well done W! There is more Campath to come but a reaction is increasingly less likely. We were able to go outside briefly between meds for the last time this morning and met Granma, Pappa and Daddy in the park, there were even some sheep, BAA! We spent a lovely hour or so with Granma and Pappa in the family room playing tractors and getting tangled up in our IV lines.
Unfortunately William managed to pull his NG tube out this evening and I only managed to get most of his now numerous medicines into him, they was much spitting and wriggling and the will put a new tube in tomorrow (no anaesthetic, but some wriggling and holding down, boo) it happens a lot with the toddlers. We saw Ivanlyo and his Mum, Danielo and his Dad, George today. He also has, or should I say had WAS! We met them in clinic here in January and Ivanlyo was very well, we met them again at the PIA Fun Day and found that he had suffered a brain haemorrhage from which fortunately there seem to be no lasting effects and he had a splenectomy in an attempt to help his platelet levels and was moved forward for transplant. He had his transplant on the 9th August and had been home over a week and looks SO well. His parents are so kind, honest and encouraging. He also had a stem cell transplant from a male unrelated donor and had the same drug conditioning as W will so that is encouraging. I really am so happy for them all that his has done so well. I was hoping to see them here or at least find out how they were and we hope to see them again when they come to clinic. I also had a chat with our next door neighbour Clare whose daughter, Lucy has relapsed Leukaemia and is having her transplant on Friday. She is a week older than William and they have moved down from the oncology ward and have been in hospital over 5 months. She is also kind and very interesting to talk to. All the children’s stories that we hear are so amazing, frightening, inspiring and humbling. Sometimes it feels hard to be brave enough but all the time we know we are lucky in so many ways.
Thursday already
It is just so busy here, there is so much going on. William had his NG tube replaced this morning and it wasn’t really too bad, the nurse was v quick and it only took a few seconds. W was up bright and early and dressed, breakfasted and was in the playroom by 7.00am! He had his second dose of Campath with a pre med today over several hours again. Grandma and Grandpa came to visit today. Mummy and Grandpa went out for lunch and had yummy pies whilst Grandma entertained William and had to settle for a sarnie. Grandma and I had our ‘Green Talk’ today. William will go into Green precautions on Sunday night and will then not be allowed to leave the room until his blood counts reach certain levels. The green precautions include aprons, lots of sterilising and mouth care and his food will come from a special kitchen and be cooked to order. His range of foods will also be slightly limited. We were given a lot of info but at least they gave us some notes to refer to and we can ask each other. We are introducing some of the measures over the next couple of days and the first thing was gloves when changing nappies which I promptly forgot! Unfortunately he had a bit of a rash and a temperature just after the Campath infusion had finished, a doctor checked him over and the piriton seems to have helped and he is much less rashy now! This also mostly happened whilst the Tracey our lovely healthcare assistant and the play assistant were looking after him and I felt bad that I wasn’t there for him but they were really good with him. Anyway, he took to his new mouthcare regime and seems to like the mouthwash, which we put on spongy swabs, he also gets a new toothbrush each day and we have to brush and swab four times a day!! He likes his (rather small) baby bath which is shaped like a boat and at least it stops him getting his Hickman line too wet, we pop the ports in a rubber glove and tape it on to keep them dry so he looks very funny, naked with a rubber glove swinging from the tubes!
I am sorry not to have been able to post this sooner, as I said there is no internet in the rooms, there are 3 computers in the canteen but the blog sites are blocked by the security software when I finally found them yesterday. My battery was flat from too much tractor ted watching when I could have popped to Starbucks down the road today. I am planning to go tomorrow so hope that you will all know a bit more of our adventures soon. I was able to pick up our e mails (we get the comments from the blog emailed to us) and we have been so touched by all your texts, comments and cards, we really appreciate all your good wishes and I had to beat a hasty retreat from the canteen before I started blubbing too much!! I think in future I am going to e mail text to my brother who will post it on the blog for me so that I don’t always have to leave the hospital and can just pop down a few floors at odd times. We are still trying to find our feet in this crazy new scary alien world of handwashing, toxic drugs and miracles.
It's friday and I have negotiated my way to Starbucks (Mum is with W and he was sleeping when I left) but is currently having even more Campath and the chemo drugs start this afternoon. At the moment William is well but he has a localised reaction to the campath in that he has one very red and swollen ear. I am quite tense sitting here with half a gallon of coffee desperate to get back to him. Every little change is so frightening but I know that certainly at this stage they are all minor oddities and that it is important to keep it in perspective. Sorry to just dump all this info, hope it makes sense. Love to you all. Catherine xxxxxxxxxxxx
We arrived in good time under the safe care of Di Gibb who relieved the pressure by driving us into the city. We find ourselves in room 3, which is very reasonably sized (will I still think that in a few weeks?) with a bathroom, window to the outside world a bed for me and a cot for William and a chair for Daddy (or Grandma in due course).
William had a Canula (a little valve that goes into a vein) fitted so that they can take some bloods and give him a platelet transfusion prior to the surgery tomorrow. So we put him down for a snooze, minutes later we spotted an alarming pool of blood on the sheet to find that his canula (having not been terribly well secured had fallen out). No damage done, just the trauma of having to find a vein again. The doctor (somewhat reluctantly, I fear) returned and was unable to find a vein despite some stabbing so Rob, William and I abandoned ship to head for Waitrose (conveniently just a 5 minute walk away, ready meals galore!) to get some lunch (btw it was about 5 by then!!) So we had a picnic lunch/tea in Brunswick Place and with dragging feet took ourselves back up to Fox Ward.
Another Doctor came, there were tears and she fled having been unsuccessful talking of the need for a special vein hunting light…3 hours (I exaggerate a little, but not a lot) later, her shift presumably over another Doctor pitches up with a small torch (?!) which he doesn’t use and successfully finds a vein!! So all fitted up the platelets are transfused some considerable time later and fortunately William manages to sleep for the most part and we finally finish around 12.30am.
Tuesday, Tubes and Lines
Awoke at 6 for Williams pre op breakfast. There was much deliberation and speculation about our position on the theatre list but nothing to eat after brekkies and then water until 10, then nothing! Aahh! However his platelet have risen spectacularly to over 250 from the 16 of yesterday due to the transfusion, which is great. The Consultant breezed through with his entourage who all thought William looked great (in so many ways!). IV fluids worked marvellously to prevent hungry and grumpy toddler and W sat contentedly watching Tractor Ted on my laptop (thanks HPPC!) which (Hoorah) I am allowed in the room but have no internet access (boo) so am just talking to myself until I venture into the world of internet cafes and the like! (No video in the room, no way of fitting our new super cheap DVD player to the TV and bad reception! Next door has a flat screen TV, no really, someone donated them to the ward but the rooms aren’t usually empty for long enough to get anyone to fit them) We do have phone, (hoorah) but have to whisper in the evening so that I don’t wake W. The number is 020 7762 6251 if anyone wants a chat! William went to Theatre at 2 and fell asleep in my arms. We went back to the room for a meeting with ward supreme Nikki, who only managed to get to us about 5 minutes before we went back to collect W, so meeting postponed. From previous experience I was expecting to be greeted by a distraught William but he was contentedly asleep and we returned to our room. He has had a Hickman/Central line fitted and a Nasal Gastric (NG) tube fitted). The line gives semi permanent access to his veins for blood tests and certain medicines. He is likely to have it for about 6 months. The NG tubs goes down his nose and into his tummy and he can have certain medicines through it and if he goes off his food can get special fortifying milk feeds through it, he may go home with it. William slept on so Nikki returned and went through the procedures and protocol with us again and I signed the consents. We were able to clarify lots of details with her and she did make BMT sound quite easy (!?!) and she should know because she has been here since the first bone marrow transplant.
W had IV fluids overnight and now they weigh and examine his nappies (nice job!) and we have to record everything that he eats and drinks. His sleep was a bit disturbed by the frequent ‘obs’ (((observations – blood pressure (the cuff always wakes him up and in the day he won’t keep still and then it doesn’t work so we are trying to bribe him with chocolate!) pulse, saturation (not sure what that is!?) and temperature))) (have I overdone the brackets?) It has been a very hard day and at times it seemed that nothing was going quite right but all’s well that ends well and I am left feeling hopeful.
Wednesday
W was sick after his rice crispies this morning when I tried to give him his (already numerous) medicines orally. One of them seems to be more than a bit yucky so we will just do one orally to keep the habit up and put the others through the tube. W had his pre Campath meds this morning, which involved paracetamol and piriton in preparation for the Campath, which he received over several hours today. The Campath will break down the T and B cells but at the moment can’t really explain why that’s a good thing. This is such a complicated procedure. We really want and need to understand it because W can’t, but there is just so much going on and it’s all so alien. The Campath isn’t chemo as I had originally thought, the chemo drugs are the Treosulfan and the Fludarabine, which start on Friday and really do the business. They were expecting a reaction from the Campath (hence the pre meds) today but W managed to sail through with only a mild temperature, well done W! There is more Campath to come but a reaction is increasingly less likely. We were able to go outside briefly between meds for the last time this morning and met Granma, Pappa and Daddy in the park, there were even some sheep, BAA! We spent a lovely hour or so with Granma and Pappa in the family room playing tractors and getting tangled up in our IV lines.
Unfortunately William managed to pull his NG tube out this evening and I only managed to get most of his now numerous medicines into him, they was much spitting and wriggling and the will put a new tube in tomorrow (no anaesthetic, but some wriggling and holding down, boo) it happens a lot with the toddlers. We saw Ivanlyo and his Mum, Danielo and his Dad, George today. He also has, or should I say had WAS! We met them in clinic here in January and Ivanlyo was very well, we met them again at the PIA Fun Day and found that he had suffered a brain haemorrhage from which fortunately there seem to be no lasting effects and he had a splenectomy in an attempt to help his platelet levels and was moved forward for transplant. He had his transplant on the 9th August and had been home over a week and looks SO well. His parents are so kind, honest and encouraging. He also had a stem cell transplant from a male unrelated donor and had the same drug conditioning as W will so that is encouraging. I really am so happy for them all that his has done so well. I was hoping to see them here or at least find out how they were and we hope to see them again when they come to clinic. I also had a chat with our next door neighbour Clare whose daughter, Lucy has relapsed Leukaemia and is having her transplant on Friday. She is a week older than William and they have moved down from the oncology ward and have been in hospital over 5 months. She is also kind and very interesting to talk to. All the children’s stories that we hear are so amazing, frightening, inspiring and humbling. Sometimes it feels hard to be brave enough but all the time we know we are lucky in so many ways.
Thursday already
It is just so busy here, there is so much going on. William had his NG tube replaced this morning and it wasn’t really too bad, the nurse was v quick and it only took a few seconds. W was up bright and early and dressed, breakfasted and was in the playroom by 7.00am! He had his second dose of Campath with a pre med today over several hours again. Grandma and Grandpa came to visit today. Mummy and Grandpa went out for lunch and had yummy pies whilst Grandma entertained William and had to settle for a sarnie. Grandma and I had our ‘Green Talk’ today. William will go into Green precautions on Sunday night and will then not be allowed to leave the room until his blood counts reach certain levels. The green precautions include aprons, lots of sterilising and mouth care and his food will come from a special kitchen and be cooked to order. His range of foods will also be slightly limited. We were given a lot of info but at least they gave us some notes to refer to and we can ask each other. We are introducing some of the measures over the next couple of days and the first thing was gloves when changing nappies which I promptly forgot! Unfortunately he had a bit of a rash and a temperature just after the Campath infusion had finished, a doctor checked him over and the piriton seems to have helped and he is much less rashy now! This also mostly happened whilst the Tracey our lovely healthcare assistant and the play assistant were looking after him and I felt bad that I wasn’t there for him but they were really good with him. Anyway, he took to his new mouthcare regime and seems to like the mouthwash, which we put on spongy swabs, he also gets a new toothbrush each day and we have to brush and swab four times a day!! He likes his (rather small) baby bath which is shaped like a boat and at least it stops him getting his Hickman line too wet, we pop the ports in a rubber glove and tape it on to keep them dry so he looks very funny, naked with a rubber glove swinging from the tubes!
I am sorry not to have been able to post this sooner, as I said there is no internet in the rooms, there are 3 computers in the canteen but the blog sites are blocked by the security software when I finally found them yesterday. My battery was flat from too much tractor ted watching when I could have popped to Starbucks down the road today. I am planning to go tomorrow so hope that you will all know a bit more of our adventures soon. I was able to pick up our e mails (we get the comments from the blog emailed to us) and we have been so touched by all your texts, comments and cards, we really appreciate all your good wishes and I had to beat a hasty retreat from the canteen before I started blubbing too much!! I think in future I am going to e mail text to my brother who will post it on the blog for me so that I don’t always have to leave the hospital and can just pop down a few floors at odd times. We are still trying to find our feet in this crazy new scary alien world of handwashing, toxic drugs and miracles.
It's friday and I have negotiated my way to Starbucks (Mum is with W and he was sleeping when I left) but is currently having even more Campath and the chemo drugs start this afternoon. At the moment William is well but he has a localised reaction to the campath in that he has one very red and swollen ear. I am quite tense sitting here with half a gallon of coffee desperate to get back to him. Every little change is so frightening but I know that certainly at this stage they are all minor oddities and that it is important to keep it in perspective. Sorry to just dump all this info, hope it makes sense. Love to you all. Catherine xxxxxxxxxxxx
Friday, 14 September 2007
Friday already
Well this week really has flown by. Still preparing ourselves as best we can for what lies ahead.
Thought that we should set out the bones of the treatment plan as it stands so here goes......
Monday 17th (Day -10) Admission and some blood tests
Tuesday 18th (Day -9) Operation to fit Central Line (go to http://www.cancerhelp.org.uk/help/default.asp?page=2586 for more info)
Wednesday 19th (Day -8) Chemotherapy starts and continues daily
Wednesday 26th (Day -1) Some other drugs!?
Thursday 27th (DAY 0!!) Today William will receive the donor cells through an infusion and then it is up to the stem cells to get to where they need to be and work their magic.......
Thought that we should set out the bones of the treatment plan as it stands so here goes......
Monday 17th (Day -10) Admission and some blood tests
Tuesday 18th (Day -9) Operation to fit Central Line (go to http://www.cancerhelp.org.uk/help/default.asp?page=2586 for more info)
Wednesday 19th (Day -8) Chemotherapy starts and continues daily
Wednesday 26th (Day -1) Some other drugs!?
Thursday 27th (DAY 0!!) Today William will receive the donor cells through an infusion and then it is up to the stem cells to get to where they need to be and work their magic.......
Thursday, 13 September 2007
More Farm Parks - Hoorah!
Had a fab day with Grandma and Grandpa at Farmer Giles. Fed the lambs, had a picnic, a tractor and trailer ride and saw a day old donkey foal! A great day out.
Spoke to one of the team at GOS this morning, William has had 4 terrible nights sleep in a row but they don't think it's the meds and to be honest neither do I. His ezcema has been worse of late and his botty a bit sore so it's probably that.
Netty rang this evening and e mailed over a new protocol for his treatment so we know what the plan is, they have added another drug which should help the donor cells. Go donor cells go (no not yet)!!!
Wednesday, 12 September 2007
Wednesday fun
Visited Vikkie and Luke and meet the gorgeous Tamsin and had a lovely cuddle. William and Luke had a great time playing with the cars and chasing the cat!
Tuesday, 11 September 2007
Tick Tock
The clock is ticking fast and the countdown has really begun. Lots of laundry and planning what to take. Last sub cut immunoglobulins for a while went without a hitch this morning and lots of fun on the slides playing with Eleanor this afternoon. Having lots of fun with William is the most important thing to us all.
Saturday, 8 September 2007
Romsey Show
Gramna Pappa and William at the show.
Driving the Fire Engine!Granma and Pappa took William and I to the Romsey Show. We saw fabulous donkeys, Alpacas (who made, yes made me buy myself a gorgeous scarf!) beautiful Shire Horses and of course, some Tractors. William drove a Fire Engine (well sat behind the wheel!) and was fascinated by the traction engines. It was a lovely morning.
Friday, 7 September 2007
Donor News
Netty rang on our return home to say that the donor has had his medical and has passed so that it great news. Please pray that the donor stays well and that he makes lots of healthy stem cells for William. Again I can't express how very grateful we are to him for what he is doing and to all other donors who really do save lives.
Friday Friends
Met up with Lisa, Nuri and Alexander at Puxton Park which was on the way home for us all. The children (and Nuri) had a great time on the slides and trampoline but we were a bit disappointed by so few animals but the farm shop was most impressive. It was so nice to meet up however briefly it has been too long.
Happy Birthday today to God-daughter Sophia.
Thursday, 6 September 2007
Camping, sheepdogs and sunshine
We have spent a lovely couple of days in North Devon the highlight of which was a trip to Windcutter Down to see the Mist, Jakey, Fern, Swift, Gail and 250 sheep with David Kennard. These are our favourite sheepdogs. William enjoys 'Mist' on dvd and it was great to see them for real. There was also a fantastic falconry display which he was fascinated by. We also enjoyed splashing in the sea, building sandcastles and eating ice creams.
Monday, 3 September 2007
Bloods, boo hiss
Had some bloods taken today which was not so great. First the nurse had a stab (literally), then the SHO (had a lot of stabs) then the Registrar finally found a vein and extracted some of that red sticky stuff. Unfortunately they couldn't do all the tests because some of it had clotted/haemalised. However sufficient results were passed on the Netty at GOS and she seemed happy that the anti fungals are not having an adverse affect on William. Hoorah!
Sunday, 2 September 2007
Lovely Lunch with Lovely Friends
The Album Cover 2007Saturday, 1 September 2007
Short and not very hairy! (it's a hairy pot plant joke!)
William has a new hair cut and so has his Mummy! Both are hospital friendly styles with less to wash and dry. The chemotherapy will make William's hair fall out so this, rather drastic cut means there will be less to sweep up and it gives us all a chance to get used to his new look. It does gives him the air of a convict when he's wearing stripy tops!!
We would like to wish Andy, Nicky, Hannah and Ella lots of happiness in their new home. Good Luck to Hannah as the new term starts. Lots of luck to Sally and Karen in their new jobs.
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