More from Tuesday +12
Wow as previously mentioned those cells are certainly getting a shift on. William does have a virus that is contributing to the diarrhoea (is there anyone who can spell that without a spellchecker? Apparently Mum can so maybe it’s just me!) There is nothing that they can do for it, just make sure that the fluid he loses is replaced. Hopefully he will be able to fight it off pretty quickly.
Wednesday +13
WCC 10.93
Neutro 8.46
Lymph 0.41
Platelets 290
More great numbers today. I sloped off to the British Museum for an hour today, its only a 10 minute walk away which was most culturally enlightening! I bought a guide book so am now authority on ancient civilisations~!~!! A wakeful evening for William again, he didn’t sleep (after his initial nap) until midnight. He was happy enough in himself although a little disappointed not to be allowed to watch Tractor Ted or play with his new Duplo after hours. I think his routine is just so disrupted with those blood pressure, temperature, pulse, pump checks and lots of noisy bins. He is MUCH better having his BP taken now. He likes to help and put the cream on the sensor. They have to do it manually with the Doppler machine because then the cuff doesn’t squeeze quite so tight. Otherwise more of the same stuff. He was a tiny bit sick but there really wasn’t anything in his stomach except some toothpaste!!!
Thursday +14
Platelets 330
WCC 8.51, Neutro 5.84
We have come a long way in two weeks. Some of his counts are a bit down on yesterday but look at those platelets go! They are lower because he didn’t have the GCSF yesterday which boosts them up, so I guess these are all without artificial help. Billy, next door and Keller are both on their way home today which is exciting and scary for them and their parents. The TPN that William is on costs £1000 a day!! So I hope its yummy (although it obviously isn’t cos it goes in his veins not in his tummy)! They are going to put a bit of a milk feed later to see if his tummy is up to it so will report back in due course. The sun is shining so as soon as W is awake and happy playing with Grandma I will be off to the internet café. Jack is much better by all accounts and there is talk of Lucy going home next week.
Happy Anniversary Lisa and Nuri, lots of love to you both, card on the way postal strikes permitting!
Thursday, 11 October 2007
Tuesday, 9 October 2007
Stop Press!
Williams white cell count today is 5.54 hoorah! his platelets are 268!!! which is amazing. Those stem cells really are magic!! His neutrophils are 3.54 (over 1 is fab!!!) His lymphocytes are also there but I can't remember the number. I think it might be time to be more than cautiously optomistic!!!!!! Hoorah!!!
I have just been on a tube ride to Marble Arch for a spot of retail therapy (to prevent reoccurence of yesterday's fashion horror) and W is currently snoozing. It is pouring with rain in case anyone was wondering and have observed that people on the tube mainly wear black and don't smile!
Anyway enough idle chit chat
bfn C xx
I have just been on a tube ride to Marble Arch for a spot of retail therapy (to prevent reoccurence of yesterday's fashion horror) and W is currently snoozing. It is pouring with rain in case anyone was wondering and have observed that people on the tube mainly wear black and don't smile!
Anyway enough idle chit chat
bfn C xx
The Fox Report
Saturday +9
William had a much better morning nappy wise but things had reverted by the afternoon which was a bit disappointing. W pulled his NG tube out again by accident so another one was fitted much to his dismay. I spent a lovely long lunchtime with Bryher. We tripped down to Covent Garden and had a nice wander around, lunch and saw some street theatre which was funny. It was weird to be in such a busy place and I returned much refreshed. Sadly Rob couldn’t stay at the patient hotel so our evening together was cut short as he headed back to Winchester.
Sunday +10 and 20 months old
White Cells 0.13
Neutrophils 0.02
Lymphocytes 0.03
We are hoping that although these counts are small, they are not insignificant. William and his nappy situation continues but he remains in generally good spirits. Today his hair will come out if tugged gently so that’s the start of that then. Ruth and Philip came up today and took me out to lunch. So we had a nice chat and a wander and Philip enjoyed seeing the squirrels in Russell Square! William now has a super wooden JCB digger added to his vehicle collection, which he loves. It does seem a long time since we were at home and doing more ‘normal’ things but I am sure that as soon as we are back this experience will feel similarly distant. William was very tired around 5 and slept for a couple of hours and is now proving impossible to settle. However his early nap did allow me to nip out for a pint with Tasha that was very welcome and a bit of a release. Rob has returned reluctantly to The Courts but will be back on Tuesday and that is not as long away as it seems. We will have Grandma with us tomorrow with tales of trains, boats and Grandpa.
Monday +11
The Consultants have been around this morning and are v pleased with William. He had a good night in the end and we slept reasonably late. I am sitting in the café trying to get on line and failing so will try and get out when Rob is with me tomorrow. Am wearing ridiculous uncoordinated and unseasonable outfit as seem to have run out of clothes this week, too much sick and poo!! Looking forward to fresh clothes delivery tomorrow courtesy of Ruth (thank you). William has been quite cuddly today but his counts are rising which is great. His Cyclosporin (an immunosuppresant that helps prevent GVHD) levels are a bit high today so he is going to miss a couple of doses to let his body catch up which is fine. One of the nurses explained Graft versus Host Disease to me the other day so I thought I would share it with you all. When you have an organ transplant your immune system attacks the organ as ‘alien’, when you have a stem cell/marrow transplant it is the immune system itself that is the alien, it doesn’t recognise the new host body initially (it has an idea because of the previous tissue matching) so it can trigger an attack on the whole body. The immunosuppresants help weaken the newly installed donor immune system to give it a chance to get to know the new body before it lets rip with all guns blazing! They will do an engraftment test next week or thereabouts to check that it is the donor cells rather than Williams own cells (having staged an extraordinary recovery) producing the new counts but as long as his platelet levels stay high we can be quite confident that it is the new ones working because Williams own can’t maintain or produce high platelet levels.
Jack (10 months) and his parents are having a difficult time at the moment, Jack has some GVHD and is suffering with fluid retention in his liver and kidneys which has made him swell up quite a lot. He has run out of smiles for the moment so we do hope that he gets some more in stock soon. Lucy, next door has been out of her room for the first time today so that is encouraging and means that her neutrophils are over 1 so that she can start to fight of infection for herself.
Today has been exhausting emotionally and I don’t seem to be very good company on a Monday (sorry Mum!) but am feeling surprisingly chatty now, in case you hadn’t noticed but must rest my weary head in anticipation of tonight’s nursing visits and in an effort to be bright eyed and bushy tailed for my dear Mr Curtis tomorrow (who is currently reading Pride and Prejudice).
Ooh forgot to mention, still lots of nappies, boo and no food. Just the TPN and some dioralyte for a while longer and then a light diet next week when we hope that his gut will have had a rest and be healed. Amazingly he is not losing weight and is not missing his food either (which is weird). Just as well we can’t eat in the room anyway though I would feel too guilty eating in front of him.
William had a much better morning nappy wise but things had reverted by the afternoon which was a bit disappointing. W pulled his NG tube out again by accident so another one was fitted much to his dismay. I spent a lovely long lunchtime with Bryher. We tripped down to Covent Garden and had a nice wander around, lunch and saw some street theatre which was funny. It was weird to be in such a busy place and I returned much refreshed. Sadly Rob couldn’t stay at the patient hotel so our evening together was cut short as he headed back to Winchester.
Sunday +10 and 20 months old
White Cells 0.13
Neutrophils 0.02
Lymphocytes 0.03
We are hoping that although these counts are small, they are not insignificant. William and his nappy situation continues but he remains in generally good spirits. Today his hair will come out if tugged gently so that’s the start of that then. Ruth and Philip came up today and took me out to lunch. So we had a nice chat and a wander and Philip enjoyed seeing the squirrels in Russell Square! William now has a super wooden JCB digger added to his vehicle collection, which he loves. It does seem a long time since we were at home and doing more ‘normal’ things but I am sure that as soon as we are back this experience will feel similarly distant. William was very tired around 5 and slept for a couple of hours and is now proving impossible to settle. However his early nap did allow me to nip out for a pint with Tasha that was very welcome and a bit of a release. Rob has returned reluctantly to The Courts but will be back on Tuesday and that is not as long away as it seems. We will have Grandma with us tomorrow with tales of trains, boats and Grandpa.
Monday +11
The Consultants have been around this morning and are v pleased with William. He had a good night in the end and we slept reasonably late. I am sitting in the café trying to get on line and failing so will try and get out when Rob is with me tomorrow. Am wearing ridiculous uncoordinated and unseasonable outfit as seem to have run out of clothes this week, too much sick and poo!! Looking forward to fresh clothes delivery tomorrow courtesy of Ruth (thank you). William has been quite cuddly today but his counts are rising which is great. His Cyclosporin (an immunosuppresant that helps prevent GVHD) levels are a bit high today so he is going to miss a couple of doses to let his body catch up which is fine. One of the nurses explained Graft versus Host Disease to me the other day so I thought I would share it with you all. When you have an organ transplant your immune system attacks the organ as ‘alien’, when you have a stem cell/marrow transplant it is the immune system itself that is the alien, it doesn’t recognise the new host body initially (it has an idea because of the previous tissue matching) so it can trigger an attack on the whole body. The immunosuppresants help weaken the newly installed donor immune system to give it a chance to get to know the new body before it lets rip with all guns blazing! They will do an engraftment test next week or thereabouts to check that it is the donor cells rather than Williams own cells (having staged an extraordinary recovery) producing the new counts but as long as his platelet levels stay high we can be quite confident that it is the new ones working because Williams own can’t maintain or produce high platelet levels.
Jack (10 months) and his parents are having a difficult time at the moment, Jack has some GVHD and is suffering with fluid retention in his liver and kidneys which has made him swell up quite a lot. He has run out of smiles for the moment so we do hope that he gets some more in stock soon. Lucy, next door has been out of her room for the first time today so that is encouraging and means that her neutrophils are over 1 so that she can start to fight of infection for herself.
Today has been exhausting emotionally and I don’t seem to be very good company on a Monday (sorry Mum!) but am feeling surprisingly chatty now, in case you hadn’t noticed but must rest my weary head in anticipation of tonight’s nursing visits and in an effort to be bright eyed and bushy tailed for my dear Mr Curtis tomorrow (who is currently reading Pride and Prejudice).
Ooh forgot to mention, still lots of nappies, boo and no food. Just the TPN and some dioralyte for a while longer and then a light diet next week when we hope that his gut will have had a rest and be healed. Amazingly he is not losing weight and is not missing his food either (which is weird). Just as well we can’t eat in the room anyway though I would feel too guilty eating in front of him.
Saturday, 6 October 2007
Feeling Brighter
William really is doing so well so far. So many of the other children are suffering much more and their parents too. Thanks for all you support, everyone. Good luck to David and Nicky as baby time approaches and our prayers are also with Roy and Mary.
love
Catherine xxx
love
Catherine xxx
More from Fox Ward
Wednesday +6
Not much sleep on this ward again last night and my mood not lightened by the nurses breezing in and out saying oh, he doesn’t look at all sleepy does he and then realising his nappy needed changing (again) every time he was just drifting off to sleep. Anyway we both managed some snoozles later in the morning which helped a bit. I know we have so many people rooting for us and that encourages me, as do surprise phone calls and cards (Thank you). I am trying hard not to feel gloomy, William is doing so well so far we have so much to be grateful for. Daniella, George and Ivanlyo stopped by the ward today to see us (breaking all policy but I think they have recent resident exemption) which was so kind of them. Ivanlyo is doing really well and they were full of empathy and encouragement. It’s an early night for me (ha de ha) W is having some more platelets later, when they get here, as well as all the usual comings and goings so I will get my head down whilst there is still over an hour to go on the Cyclosporin…..ps still no milk feed, mainly cos the dietician didn’t order it in time for tonight and the dioralyte came up with a different patient name on it so just water overnight yum yum.
Thursday and Friday +7 and +8
Topped up successfully with platelets over night. William had a better day today with fewer nappies. The Dieticians wanted him to go milk free for a few days which sent me into a panic as pretty much the only things that I have been able to tempt him with over the last week have been dairy based. However as I write this on Friday afternoon the plan has been revised and the Doctors have prescribed TPN (Total Parental?! Nutrition) for him which will run continuously and he will have a few days with no other food and just clear fluids to give his poor tummy and gut a rest. Each time he has eaten today (well only twice) he has been in some discomfort immediately afterwards so I think the food is aggravating his insides now. He was sick last night just as he was bathed and settled into a nice clean bed and as Nick arrived to take me out to dinner. Unfortunately as previously these spectacular sick episodes result in his NG tube coming out. They were very quick to put another one in and he was bathed and happy again before too long so I was able to go out leaving him happy with Grandma. I think he had a great evening being allowed to watch Tractor Ted after hours! I too had a delicious meal in good company and returned refreshed. This morning William has been very clingy and a bit subdued. The consultant visited this morning and remembered that he had met us briefly when we went to Bristol for his bone marrow biopsy in May 06. That seems so long ago now. They seem pretty pleased with him and all our concerns about William’s physical symptoms are very standard and to be expected at this stage of the treatment. Jack the little 10 month old SCID baby is a day ahead of W with his treatment and he started to lose his hair yesterday. I have been anxious since his Mum told me that and keep frantically tugging at Williams to make sure it is still firmly attached. Whilst I know that this will inevitably not last I think it will take me a little while to deal with this despite the fact that it is one side effect of treatment that is only temporary and won’t hurt! William started a new medicine today called GCSF to help boost his white blood cells and neutrophils so lets hope that magic works over the next few days.
Not much sleep on this ward again last night and my mood not lightened by the nurses breezing in and out saying oh, he doesn’t look at all sleepy does he and then realising his nappy needed changing (again) every time he was just drifting off to sleep. Anyway we both managed some snoozles later in the morning which helped a bit. I know we have so many people rooting for us and that encourages me, as do surprise phone calls and cards (Thank you). I am trying hard not to feel gloomy, William is doing so well so far we have so much to be grateful for. Daniella, George and Ivanlyo stopped by the ward today to see us (breaking all policy but I think they have recent resident exemption) which was so kind of them. Ivanlyo is doing really well and they were full of empathy and encouragement. It’s an early night for me (ha de ha) W is having some more platelets later, when they get here, as well as all the usual comings and goings so I will get my head down whilst there is still over an hour to go on the Cyclosporin…..ps still no milk feed, mainly cos the dietician didn’t order it in time for tonight and the dioralyte came up with a different patient name on it so just water overnight yum yum.
Thursday and Friday +7 and +8
Topped up successfully with platelets over night. William had a better day today with fewer nappies. The Dieticians wanted him to go milk free for a few days which sent me into a panic as pretty much the only things that I have been able to tempt him with over the last week have been dairy based. However as I write this on Friday afternoon the plan has been revised and the Doctors have prescribed TPN (Total Parental?! Nutrition) for him which will run continuously and he will have a few days with no other food and just clear fluids to give his poor tummy and gut a rest. Each time he has eaten today (well only twice) he has been in some discomfort immediately afterwards so I think the food is aggravating his insides now. He was sick last night just as he was bathed and settled into a nice clean bed and as Nick arrived to take me out to dinner. Unfortunately as previously these spectacular sick episodes result in his NG tube coming out. They were very quick to put another one in and he was bathed and happy again before too long so I was able to go out leaving him happy with Grandma. I think he had a great evening being allowed to watch Tractor Ted after hours! I too had a delicious meal in good company and returned refreshed. This morning William has been very clingy and a bit subdued. The consultant visited this morning and remembered that he had met us briefly when we went to Bristol for his bone marrow biopsy in May 06. That seems so long ago now. They seem pretty pleased with him and all our concerns about William’s physical symptoms are very standard and to be expected at this stage of the treatment. Jack the little 10 month old SCID baby is a day ahead of W with his treatment and he started to lose his hair yesterday. I have been anxious since his Mum told me that and keep frantically tugging at Williams to make sure it is still firmly attached. Whilst I know that this will inevitably not last I think it will take me a little while to deal with this despite the fact that it is one side effect of treatment that is only temporary and won’t hurt! William started a new medicine today called GCSF to help boost his white blood cells and neutrophils so lets hope that magic works over the next few days.
Tuesday, 2 October 2007
Why I hate Mondays!
Monday +4
Well I was in bed asleep by 8 last night but an hour later the nurses were doing their usual and were in and out every few minutes doing something or other so it was past midnight before I slept for a bit again. William slept reasonably through most of the cafuffle and beeping though. He has been a good, brave boy today. He ate a whole slice of toast this morning. Unfortunately his NG tube came out again, the plaster holding it in place had seen better days. He screamed and went v red when they put a new one in but he soon forgave the nurses. The play assistant finally pitched up to offer ‘helpful’ suggestions on ways to get William more comfortable with having his BP taken, sadly she had nothing new to offer but was at least impressed by Grandma’s latest acquisition of a toy BP cuff with pumping action! I escaped for a breath of fresh air and my routine trip to Waitrose leaving William in Grandma and Tractor Teds capable hands. It was also dressing changing day for his Hickman line so more torture for the poor wee man but we did it mid Jaffa cakes so at least there was a chocolatey reward at the end. A different Consultant breezed by this morning (a small team rotate every 6 weeks so hopefully we won’t be here to meet the next one) who seemed nice enough and not worried about W at this stage. W was less struck on him but is now wary of people he doesn’t recognise wearing plastic aprons. We were glad of Grandmas company today on what has been one of the more wearing days. Keller the 9 years old a couple of doors up was allowed out of his room for the first time post transplant today so that gives us all hope to see him walking up and down the corridor. I am very proud of Robert today who went to a primary school in Chippenham and did a talk for Jeans for Genes day in front of an audience of over 250 children. Did you know you share 50% of your genes with a banana?
Tuesday +5
A rather traumatic evening for W last night, his NG tube was somehow blocked and they had to put a new one in. Two in one day isn’t much fun at all, for anyone. Anyway we were finally resettled just past midnight so were only just waking up, mostly thanks to the fire alarm which someone’s toast sets off most mornings, when Daddy arrived laden with goodies once again. In the past few days we have changed A LOT of nappies not to put too finer point on it and his petit derriere is suffering. He has been having Dioralyte through his NG tube at a fairly slow rate all night and day plus the odd IV fluid top up. He is not losing weight at the moment which is good and they will probably put a milk feed up tomorrow and see how his tummy copes with that. He is encouraged to eat anything he likes and today has taken advantage of that with chocolate buttons and jelly tots a plenty and just a small bite of pear and spoonful of yoghurt. The last couple of days have felt long and tiring, the end seems a long way away and the frequent nurse visits, especially when he is just dropping off to sleep have become increasingly tiresome. I popped into the chapel today which is beautiful. Very ornate, apparently they moved the whole thing from a different building. I am reliably informed that it was featured on Blue Peter some years ago. William is about to be freed from his tubes for an hours run around before bath and bed and more tubes so I shall go and enjoy this time with him.
Well I was in bed asleep by 8 last night but an hour later the nurses were doing their usual and were in and out every few minutes doing something or other so it was past midnight before I slept for a bit again. William slept reasonably through most of the cafuffle and beeping though. He has been a good, brave boy today. He ate a whole slice of toast this morning. Unfortunately his NG tube came out again, the plaster holding it in place had seen better days. He screamed and went v red when they put a new one in but he soon forgave the nurses. The play assistant finally pitched up to offer ‘helpful’ suggestions on ways to get William more comfortable with having his BP taken, sadly she had nothing new to offer but was at least impressed by Grandma’s latest acquisition of a toy BP cuff with pumping action! I escaped for a breath of fresh air and my routine trip to Waitrose leaving William in Grandma and Tractor Teds capable hands. It was also dressing changing day for his Hickman line so more torture for the poor wee man but we did it mid Jaffa cakes so at least there was a chocolatey reward at the end. A different Consultant breezed by this morning (a small team rotate every 6 weeks so hopefully we won’t be here to meet the next one) who seemed nice enough and not worried about W at this stage. W was less struck on him but is now wary of people he doesn’t recognise wearing plastic aprons. We were glad of Grandmas company today on what has been one of the more wearing days. Keller the 9 years old a couple of doors up was allowed out of his room for the first time post transplant today so that gives us all hope to see him walking up and down the corridor. I am very proud of Robert today who went to a primary school in Chippenham and did a talk for Jeans for Genes day in front of an audience of over 250 children. Did you know you share 50% of your genes with a banana?
Tuesday +5
A rather traumatic evening for W last night, his NG tube was somehow blocked and they had to put a new one in. Two in one day isn’t much fun at all, for anyone. Anyway we were finally resettled just past midnight so were only just waking up, mostly thanks to the fire alarm which someone’s toast sets off most mornings, when Daddy arrived laden with goodies once again. In the past few days we have changed A LOT of nappies not to put too finer point on it and his petit derriere is suffering. He has been having Dioralyte through his NG tube at a fairly slow rate all night and day plus the odd IV fluid top up. He is not losing weight at the moment which is good and they will probably put a milk feed up tomorrow and see how his tummy copes with that. He is encouraged to eat anything he likes and today has taken advantage of that with chocolate buttons and jelly tots a plenty and just a small bite of pear and spoonful of yoghurt. The last couple of days have felt long and tiring, the end seems a long way away and the frequent nurse visits, especially when he is just dropping off to sleep have become increasingly tiresome. I popped into the chapel today which is beautiful. Very ornate, apparently they moved the whole thing from a different building. I am reliably informed that it was featured on Blue Peter some years ago. William is about to be freed from his tubes for an hours run around before bath and bed and more tubes so I shall go and enjoy this time with him.
Monday, 1 October 2007
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