Wednesday 25 November 2009

D +194

Oliver has his immunoglobulin via canula 2 weeks ago and he surprised us all by being really co-operative. When they showed him it was a little straw that stayed in his hand and not a horrid needle he accepted it and the infusion ran without incident apart from the usual boredem.

Had some excellent news yesterday tea time. Olivers lymphocyte sub set results came back and his CD4 count is 309! This is fab news as it seems to be the Magic number GOSH use to determine if he is safe to mix with other children and go to nursery. He will now be going to nursery in January - and I will be taking him to all the soft play areas he used to enjoy - the difference being I can now take him without having that sick feeling in the pit of my stomach the whole time we are there thinking he was going to have a bleed or a bad bump and end up in hospital or worse. It will be so liberating for him and us for sure! A wonderful early Christmas present.

This also means that his immune system is rebuilding well. He is not fully there yet and he will remain on immunoglobulin until Spring to protect him from the winter bugs. After that he should start his vaccination program again as his previous ones will have been wiped out by the transplant.

We are all having our swine flu vaccine and seasonal flu vaccine tomorrow night which we need to have to protect Oliver. Adam has escaped though as he is too young bless him.

Will continue to update when I can. Again I must stress that this would have been so much harder without the support of family (especially mum, dad and Linda- olivers auntie) and friends. We love and thank you all.

Saturday 7 November 2009

D +176

Olivers Hickman line was successfully removed on Wednesday last week, he was a bit hysterical when he came out of the anaesthetic as he had a canula in the back of his hand,but he soon calmed down. We have to now have his immunoglobulin via a canula which should be fun but better than the constant threat of infection with the Hickman line.

He continues to be well and he is full of energy but his behaviour is taking a downward turn he is just so fed up of being cooped up in the house. GOSH have said he can go swimming at quiet times which is another huge step forward. They have also said he should be able to start nursery in January which is great news for us all particularly Oliver. We have got an inclusion support worker who will liaise with the school to ensure they give him his medication and inform us of any illnesses in school, in particular, Chickenpox as this is still quite serious for Oliver whilst his immune system is reconstituting.

Our next appointment at GOSH is on the 27th January and we are hoping at that point we can go to 6 monthly appointments, but I suspect it will stay at 3 monthly for a while. We will always be in the debt of GOSH who have played a very important part in saving Olivers life. We intend to apply to the Anthony Nolan Trust after 2 years to meet Olivers donor, this is of course his decision. What do you say to the person who has saved your sons life? Thank you seems so inadequate. He will be 23 years old by then and Oliver will be 5 1/2. Mind blowing.

Will continue to update when possible - very busy at moment with a caged 4 year old and a 2 month old - who continues to be a joy.

Bye for now

Sunday 25 October 2009

D +170

The days are flying by and Oliver (by the grace of god) continues to do well. He is eating and drinking normally (apart from the usual behaviour issues with eating!) and he is having his Hickman line removed on Wednesday! This is great news as its another step torwards normality - whatever that is - and a big reduction in the likelihood of an infection, in the line anyway. His counts are within the normal range but Lympocytes and neutraphils still a bit low. His White blood cell count was really low too and I went into a panic about graft failure but Great Ormond Street assure us everything is fine.

Adam is doing great although he is a very lazy eater so he wants to feed again within a couple of hours. After having an ill child though he really is a blessing so I accept these little idiosyncrasies and its part of the joy of having another child when we really thought we would not have any more.

We are hoping that Oliver will be able to start nursery in January, it all depends on his counts though. He really is like a caged lion now and is desparate to mix with his peers so we are keeping everything crossed. He still has restrictions on how many people he can be with and what he can eat etc, so we have a way to go yet.

Our friend - Shaun Milburn is running a half marathon today in aid of the Anthony Nolan Trust and has cited Oliver as his inspiration for doing so, we are so grateful and without our friends and family we would not have got through the last year. Please visit his site at and please urge everyone you know to register with the Anthony Nolan Trust, a young man I know of has passed away this week as he never found a match. Lets work together to make this a thing of the past.

Will update again with more news - thanks, thanks and thanks again...xx

Friday 25 September 2009

D +140

Oliver has now got his NG tube out!! Accident rather than design, he drank too much juice and wretched it out. So we decided to trial it being out. He is taking his medication by mouth, he is eating and drinking normally now, going to the loo for a pooh about 4 times a day and we are hoping he has turned a corner. GOSH have also said he can have his hickman line out, but our local hospital are hesitating Im on the verge of saying just take the bloody thing out!!!!! He is only having bloods done now every three weeks and I don't see the point in him having his dressing changed and the line flushed every week for nothing, just waiting for him to get an infection in it.

We saw a surgeon at Sheffield yesterday and he does not think Oliver has hirschsprungs disease and he is not going to perform a biopsy at this time. Oliver will have a follow up appointment with the G.I doctor in October.

This is great news are we really are keeping everything crossed that he has turned a corner. Bless him he deserves it. Please join us in hoping and praying that this is the case.

Saturday 19 September 2009

D +134

Now on D +134 and time is passing so fast. Olivers blood results remain stable and he is still 100% donor engrafted which is excellent news. His tummy problems have continued however and he had an MRI scan at Sheffield Childrens hospital to see if that uncovered anything. All it showed is that his colon is quite 'baggy' which can be a sign of another congential problem - hurschprungs disease. This however usually presents in infanthood so we are talking about having a biopsy done to be sure - however GOSH do not want this yet because he is still so early out of transplant. If it is that it will mean a surgical procedure to put it right so looks like we might not have dodged hospitals quite yet.

He is starting to show signs of going to the toilet without laxatives though so I suppose only time will tell. There is definately a physcological barrier there too as he said he does not want to do a pooh as it hurts his tummy.

He is now off cyclosporin, metoclopromide and itraconazole oh, and magnesium so we are slowly getting to a point (if he continues to eat properly) that his NG tube can come out. GOSH have also said that he can now go to three weekly blood tests and that in theory his hickman line can come out. Thats a huge step forward and a big infection risk gone so Im chasing Sheffield now as they should be able to do the procedure to remove the hickman line.

Other news is that we have had our baby! Adam Stanley Wootton was born on 2nd September 2009, at 18.23 by C-section weighing 9 pounds 14 ozs! So Im now in isolation too (well i can't drive for 6 weeks) Im beginning to know how Oliver feels. He is absolutely adorable but its hard juggling a newborn and a toddler especially a toddler who is like a caged lion at the moment.

Must go as Adam is calling for food he is such a milk monster - thanks for your continued interest and support. I hope you join us is hoping and praying that Olivers tummy problems pass on their own and he continues to keep that precious engraftement.
love to you all

Sunday 16 August 2009

D +100

We are now on D +100 since transplant, it only seems like yesterday when we were leaving GOSH! Olivers blood results continue to be good particularly his platelet count which is something we always concentrate on. His Haemoglobin is still slightly low but better than it has been so hopefully that will improve with time.

He continues to have tummy problems but we appear (touch wood) to now be keeping on top of it with giving him regular laxatives to get his bowel to work properly and hes been quite well this week although he still is not eating much and we cannot for the life of us meet 1300ml of fluid a day so he is still on the overnight milk feeds through his NG tube which has taken the pressure off to a certain extent.

We are (well, Dave is - given that Im due to give birth any time) at GOSH next week and have many, many questions to ask - some of which involve taking him off some medication and we can then at least hope for the NG tube to come out when he starts eating a bit more. Also we are not sure about the fluid target and what drugs that depends on so need a few answers on Wednesday.

He will also have another engraftment study done and we hope he remains 100% donor- which all his results indicate his is but its nice to have it confirmed.

His hair has started to grow back although its still very much like peach fluff and he remains very hairy elsewhere -which is down to the cyclosporin. Now he has been weaned off this, the hair should slowly recede unless he has problems with GVHD and not sure if he will then go back on cyclosporin or on steriods.

Oliver has also had a wish granted from the 'make a wish' foundation which we are trying to organise - he will get a full wish day involving a trip out in a limo or something similar and a new toy for the garden in his case a climbing set - something we have not been able to let him have up until now because of his platelet count. This should be a wonderful day and hopefully re-affirm the start of new lives for all of us - most importantly Oliver.

Will sign off for now - will keep updating when relevant -much love to you all.

Wednesday 29 July 2009

D +82

We are now on Day 82 unbelievably - since transplant. Oliver has been in and out of Sheffield Childrens hospital and is now under the care of the GI doctor there to try to iron out his tummy problems.

His hair has started growing back but he still has his NG tube in situ as he is still on a number of drugs and overnight feeds to meet his fluid target.

He has had a couple of unexplained rashes, and I suppose post transplant you think the worst each time.

He has tested positive once to Adenovirus in his pooh which is quite nasty but so far its not in his blood or this throat so Sheffield continue to keep an eye on this also.

We wonder when the fear will leave us, as his platelet count is now normal, we are no longer worrying about bruises but infection so one worry has turned into another. It does come with the territory of transplant but nevertheless is still very hard.

Baby is due in three weeks and I am really looking forward to his arrival - not least cos i feel like a useless lump and the moment!

Thanks for all your messages of support and your continuous concern and love - it means to world to us all.

Monday 13 July 2009

D +66

Well, we got discharged from Sheffield, had a reasonable week with Oliver responding well to his overnight feeds and becoming more like his old self, we are back in hospital today!

He has had a temp and some swelling round the exit site of his hickman line so they have taken blood cultures and swabs from the site to check for a line infection. This means that he will have to go on IV antibiotics until we know its not an infection or for longer if it turns out it is.

His blood results remain good, although his haemoglobin is still lower than its should be, everything else is fine. We also had it confirmed by GOSH at his last visit he was still 100% donor engrafted.

I remain hopeful that we will all be home when I go into labour with our new baby.

Will keep you posted, must sign off now as am a tired 34 week pregnant woman on a mission to go to bed! Dave is with Oliver tonight bless him hes a fab Dad.

Friday 3 July 2009

D +56

We have been given the 'weekend off' from Sheffield Childrens hospital. Oliver has made good progress and is asking for food and is allowed a light diet. We have yet to see if he will have a pooh on his own without the need for laxatives. He has had a bit of tummy pain but that seemed to co-incide with starting him on a higher calorie milk, so we have changed it back to the original.

He is on an overnight milk feed now which we can do at home with the help of a pump which will give him both fluid and calorie intake and will help us all enormously.

We went to GOSH on Wednesday 1st July and apart from the sweltering heat and the 7 hours in total in an ambulance it went well. His consultant wants to start weaning him off the ciclosporin which we will do over the next 6 weeks, magnesium supplement and amilodopine (for high blood pressure, caused by the ciclosporin!) will follow. He has also been taken off Itraconazole. All being well GOSH don't want to see us again for another 2 months and are happy for Sheffield to Manage Oliver which is great news.

Olivers platelet count was at last FBC 252K which is fantastic. His hb is still low and lymphocytes still low but all other counts within normal range.

We return to Sheffield Childrens hospital on Monday for his immunoglobulin and for further assessment. If the weekend goes well we can be discharged and continue with the milk feeds etc until such a time he does not need them.

We are really happy with the care at Sheffield and will be grateful to them for the progress Oliver has made.

Will keep updating as events happen

Wednesday 24 June 2009

D + 47

Well, Oliver is now in Sheffield Childrens hospital. His tummy problems continued until he was down to eating and drinking nothing and was in utter agony.

We took him in and now he is nil by mouth, has been on morphine and we are trying to get to the bottom of what is wrong. He has had two x-rays, and an ultrasound. The first x-ray showed distension in his bowel but nothing else and the 2nd one has shown some improvement. The ultrasound also shows no abnormalities.

We are therefore at a loss as to what is wrong, lots of conflicting opinions, GVHD of the gut, a bug, or that the chemo has stripped his GI tract of its lining and natural flora and has therefore become very sluggish.

He is also now on a new drug to try and help with his tummy. A good sign is that he is asking for food however he continues to wretch when he has any more than about 20ml of fluid in his tummy.

Some good news which has been rather overshadowed by all this is that his platelet count is now 223K!!! Thats well into the normal range and its what we have been wanting an praying for so long, its such a shame that this set back has clouded it. His blood count as a whole is good. HB quite low but not surprising really as he has not eaten anything in about 4 days.

The docs want him to try a little bit of food tomorrow, but if he can't tolerate it, he will have to go on TPN. This is something we ran from in GOSH but at the moment if things continue we have no alternative he needs proper nutrition from somewhere.

Please join us in hoping and praying that he will tolerate some food tomorrow and begin to get better. Hes been through so much, he deserves some respite from hospital life and just to start being a little boy again. Its so hard not to break down and cry but keep trying to be strong for Oliver and our new baby Im carrying.

Will update when I can

Thursday 18 June 2009

D + 42 and home!

Oh my goodness, I can't believe I haven't updated with our important news - we are home!

Oliver continues to have tummy problems and has not eaten anything for the 2nd day because he has not been to the toilet again since Sunday. We are keeping everything crossed that its like the doctors at GOSH said his gut needs time t0 get better from the chemo.

We continue to strive to get his 1300 ml of fluids in him and the gravity feeding tubes are a god send or we would never do it.

We have found another family whos son is affected by WAS a few miles away in Newark and we hope that we can share this journey with them too.

I will continue to update with Olivers progress. The community nurse has been in today to take his blood for cyclosporin levels and a FBC so hoping that his platelets come up or stayed the same.

Just found out that although the local hospital has agreed to do his immunoglobulin there, none of the nurses are trained in central lines so this will have to be addressed. However Sheffield Childrens hospital have agreed to take some of his care on so we will probably be able to have it done there.

Anyway, signing off for now - thanks for your supportxx

Friday 12 June 2009

D +36

We are now on Day 36 and Im pleased to say at last Oliver has had a pooh and we are looking to going home once he can come off IV fluids!!!!!!!!! We have to have a last MOT re viruses and bacterial infections before we can go and of course step up his fluids as he cannot go home on IV fluids.

Its extremely hard to get a 3 year old to drink 1300 ml of fluids a day!

He has eaten a little more today and is no longer disgusted at the thought of food - bless him he must have been so bunged up.

His platelets today are 90K which is fantastic news - this is hopefully going towards a 'normal' count which would make all our dreams come true.

The photo was taken today with him looking a lot happier than he has in days, which in turn makes us happy.
We still have a long way to go when we do eventually go home but its another huge step in the final 'cure' for Olivers Wiskott Aldrich Syndrome.
I will never forget how hard this has been on all of us but in turn I will never forget what GOSH and Olivers donor have done for us, its nothing short of a miracle.

Monday 8 June 2009

D +33

My I have been slack again at updating.

The good news is that Olivers counts continue to rise and yesterday his platelet count was 79K and today 69K -which is around the same (the margin for miscounting is around 10) - this means that he has started making platelets for the first time in his life which is amazing. It is not a normal count (normal is 140K to 300K) but a safe range and you can even have an op at 50K. His white blood cell counts also continue to rise which will help to protect him from infection. We were also elated to learn that Oliver has got 100% engraftment of donor cells so hopefully now the marrow will keep growing and working.

Not so good is that Oliver is still not eating properly and his really constipated. He is also losing weight so we will not be allowed to go home until he has a pooh and starts eating. Easier said than done with a stubborn, scared 3 year old. Bless him we are expecting such a lot of him when his little body has been through so much.

The staff here are great but it now feels like living in a fish bowl and sometimes you just want to scream leave me alone!!!!!

Our continuing thanks for all the support and messages of support we are getting and also your cards and presents. We feel very lucky to have such wonderful friends and family

Monday 1 June 2009

D +25

Again ive been a bit slack at updating this blog - just been another rollercoaster of a week. Oliver has continued with the stomach cramps, so much so he went to hardly eating anything, so then we were worried he would have to go on TPN (Total parental nutrition) through his line, but after another dose of laxative, and another explosion, he has started eating again.

His white blood cell counts have fluctuated since my last update, and his full WCC count today is 0.96 and his neutraphils 0.45. The good news is that his HB (haemoglobin) has gone up and his platelets have held (44K, 45K, 46K) for three days!! We are holding onto our hats that this may be the start of an improvement but at this stage that can really fluctuate so will wait to see what tomorrow brings.

They should be testing him for engratfment this week so everything crossed.

The photo was taken on a good day

Monday 25 May 2009

D +18

Ive not updated for a few days due the the rollercoaster of events and being shattered!

Things have been a bit rough to say the least, we have had (in no particular order) vomiting, diaroehha, NG Tube coming out and having to be replaced - what fun!, Really bad trapped wind that ended up in an x-ray, extreme reaction to the IVIG, which peed me off as I told them to pre-medicate him first and they didn't and voila! Hives, vomiting and fever, extreme reaction to a unit of platelets, massive explosion of wind and pooh everywhere.

Oliver in the playroom

We think the trapped wind is originating from the milk feeds being pumped in overnight and also the stomach cramps. We are going to put our foot down tonight and he is NOT having the milk. He is eating and drinking little and often orally and we don't mind his fluids being topped up via IV but the milk is what we have put it down to by process of elimination and now he has got rid of all the wind etc, we don't want it to build up again. Will speak to dietician about alternatives.

On the positive side, his WCC , Neutraphils and Lymphocytes have been as follows:

D +14 - WCC 0.21, N - 0.06, L - 0.02
D +15 - WCC 0.27, N - 0.12, L - 0.02
D +16 - WCC 0.51, N - 0.31, L - 0.03
D +17 - WCC 0.53, N - 0.33, L - 0.03
D +18 - WCC 0.82, N - 0.68, L - 0.03

So from D +17 we were allowed to come out of the cubicle and into the playroom - god what a relief!!

The consultant says that if he continues to rise like this, they will be testing for engraftment towards the end of the week. Please join us in hoping and praying that we will get 100% donor.

The next issue is his platelets holding, we gave him the last platelet transfusion yesterday and we are hoping that is the last one.

He has now lost most of his hair and has just got some baby fluff left, which I can't stop stroking, its like velvet!

Signing off for now, and again thanks so much for all your support.xx

Wednesday 20 May 2009

D +13

Had a nightmare day yesterday. Olivers hair is falling out everywhere, he won't let us anywhere near him with the electric clippers so his bed looks like a bears been sleeping in it! He had an enormous tantrum and threw various things around the room, I arrived to see Dave in the process of picking them up.
His Platelet count was 133K yesterday after the transfusion and is 110K today which is fine. His White cell count is now 0.12 and we can now differentiate between neutraphils and lymphocytes which is another step in the right direction. Although Ive been told that this can fluctuate and not to freak out too much if it drops a bit.
He still has a sore bottom and is having some tummy cramps so we are keeping an eye on that.
Have spoken to the Dietician and she is happy with the little he is eating at this stage of the game and that his weight is stable enough for him not to have to go on TPN (Total Parental Nutrition) through his Hickman line. His Magnesium levels were a bit low this morning so he has just had a top up whilst he is asleep.
We still have a long way to go and the days are incredibly long and hard for all of us but we are remaining positive and have faith in the doctors when they say he is doing well.

Monday 18 May 2009

D +11

Didn't have time to update yesterday. Nothing happened really during the day, apart from Oliver still not wanting to eat and having milk feeds via his NG Tube. He was still having stomach cramps but a dose of codiene last night helped to settle him.
His counts remained flat yesterday with platelets at 44K and no rise in his white blood cell count.
One thing that DID start to happen last night is that his hair has started to fall out bless him. I was really upset at first but Dave pointed out that its an indicator the chemo has done its job.

Today his Haemoglobin is below the threshold - 7.3 (the threshold is 8) and his platelets have dropped to 30 so he is going to have some platelets and red blood today.
However, his white blood cell count has gone from 0.03 yesterday to 0.10 today. Hoping this is the start of a rise.

He is currently asleep with yet another milk feed going in - we keep telling him if he tries to eat something he won't have to have the milk feed but he doesn't feel like it so we are going to have to take this slowly.

We have started putting his hair in a little bag at his request - he has started pulling it out himself - which is quite funny to watch and then he sprinkles it into the bag!

Thanks again for all the messages of support - it means so much to us to know you are all pulling for him.

Saturday 16 May 2009

D +9

Today is Saturday and not a huge amount to report really.

Olivers platelets today are 76K so he is holding on to them quite nicely considering his history. His White blood cell count remains the same so no changes on that front.

He continues not to want to eat or drink much but considering how much worse things could be we are trying to count our blessings. The rash/discolouration he has due to the treosulphan is starting to peel just like sunburn and the skins looks OK underneath so we are just trying to keep it from getting too dry and itchy. He has, as yet not had a temperature and all his obs are within normal limits. The doctors continue to re-assure us that he is doing really well.

As I write he is asleep having 200 ml of milkshake pumped in via his NG tube! At the same time as having his Aciclovir IV infusion.

I think our new baby his having a growth spurt as I feel like Im going to burst at the moment. Am going to see the midwife next week just to have a listen in and take my blood pressure etc.

We continue to get messages of love and support from home and this is very welcome- sending you all a big hug.

Its my turn to stay tonight so might not be able to update tomorrow. Will see if I can keep my eyes open tomorrow.

Thursday 14 May 2009

D +7

Today has been quite miserable for Oliver. He has been very grumpy all day. We don't know whether he is just fed up of being in this room or he is feeling a bit yucky.

I think its taking its toll on us all and today seems very flat. No improvement in his counts apart from his platelets but no surprise there as we have a good 2 weeks to wait for his counts to come back up.

His platelet count is 116K today so he is holding on to them at least for a few days.

The rash is still there and we are just making sure it doesn't get infected.

No other news really, will update tom.

Wednesday 13 May 2009

D +6

Well we are half way through D +6 and I hesitate to say (touching all the wood I can find!) that its not been too bad so far! Oliver has still got that awful rash and he has been scratching it so we need to keep an eye on it so it doesn't get infected. He has eaten a little more this morning, and asked for a drink of water which is all good.

He had a platelet transfusion overnight which has taken his platelet count up to 160K which should last him for several days.

He is asleep now and having his IV Aciclovir which takes about an hour so we have taken the opportunity of putting some water through his NG Tube to give his fluids a boost.

The doctors have been round and they are pleased with his progress so far.

I can't quite believe that we are 7 days post transplant tomorrow, it seems like we waited so long for it and now its been and gone in a flash.

Will update tom.

Tuesday 12 May 2009

D +5 cont

Good news - we have got a room at the sick childrens trust house which means that this is our room now for the duration of our stay and we will not be moved again.

This is a charity and depends wholly on donations, but they do not charge parents a penny.

We intend to make a donation at the end of our stay, they do brilliant work for the families of children in GOSH although they are completely independent of the hospital.

Please take a look at the website to see what they offer families of children in hospital.

D +5

Not a lot to report today really - not sure if thats good news?!!

Oliver continues not to eat much so is on night feeds and fluids to keep him topped up. His platelet count has dropped so they are probably going to give him another platelet transfusion tomorrow. This will continue until he starts making his own (which will be a VERY happy day!)

Can you also believe we have been asked to vacate our accommodation as someone elses need is greater than ours. mm we come from 150 miles away, Im 25 weeks pregnant, our son is in hospital for a long term stay for a monumental procedure.....? I am now expected to go back to sharing a room with another mother. Ive said that this is completely out of the question as how do I know that other person has not got a virus? Oliver has NO defences whatsoever at the moment and I will not take the risk of compromising him no way! Yes we go out in public but thats not the same as sharing a room and breathing the same air as someone in a confined space overnight. We have to go back to accommodation in a hour to see if they can sort us something out. It seems so unfair to give us something and then take it away, so watch this space. As if you have not got enough to worry about!

Anyway the focus remains on Oliver and we continue to remain positive and are willing those cells to do their job.

Monday 11 May 2009


It was my turn on the nightshift again last night, so Im trying to update when I come back to our room.

We are now on D+4. We had some disappointing news the day after transplant day in that they could not get the amount of cells they would like from the Donor - it seems that he just couldn't donate anymore marrow than he did. This came as a devastating blow initially as we thought that meant failure. However it was explained to us that this is not the case and that it will just take longer to engraft. Also that they could have got double the number of cells and its no guarantee of engraftment - there is no set pattern so we are back to watching and waiting and hoping.

Oliver has had a couple of days vomiting on and off and has some discolouration of his skin around his groin - both to be expected, although the sickness is distressing, Im trying to think of it that he has a bad tummy bug and just waiting for they symptoms to subside.

He had a good night last night considering all the comings and goings with his observations, milk feeds, IV fluids, anti viral, anti rejection plus the oral meds he is having down his NG Tube. He fell asleep around 9.30pm and woke with griping pains in his tummy, turns out it was a massive attack of wind. I changed him around 1am and then he asked for me to get in bed with him. Not passing up the chance of a cuddle, I obliged and he slept through till 7am this morning when Dave arrived.

The drugs regimen seems relentless, 1 hour infusion of Aciclovir @ 6am followed by a half hour flush, then 2 hour infusion of Cyclosporin and a half hour flush. These are given 3 times a day so he is hooked up nearly constantly bless him. He also has lots of oral meds via his NG Tube.

He has only had platelets so far and he seems to be holding onto the ones hes being transfused which would indicate that he has not got any anti platelet antibodys which is great.

He would receive red blood if his haemoglobin goes below 8 and platelets if his platelet count goes below 30K. Given that we are used to him running a platelet count of less than 10 this is a bonus for us.

He hates the hospital food and Ive got to say I don't blame him so now we are used to what he can and can't have we are getting our own in which we are hoping will help him to maintain his nutrition and in turn his weight. The dietician is coming today so we can discuss options with her.

So, we will see what today brings- signing off for now

Thursday 7 May 2009

D 0 - Transplant Day

Above - Olivers new stem cells

Here at last!
Oliver spent most of transplant day hooked up to IV machines, having his various drugs infused. He has to have his anti-viral and anti-rejection twice a day and each takes about 2 hours so not much of the day when he is free from tubes (or wiggly worms as we have come to know them) We, of course spent the day entertaining him and eagerly anticipating the arrival of his much waited for stem cells.

They arrived about 5.30 pm and Ive got to say I thought oh, is that it? The bag of salmon coloured cells was a lot smaller than Id imagined but the main thing is it had the precious cells in it that a lovely young man has kindly donated. They started going in via his hickman line about 6pm and during this time Oliver was asleep - the pre-med he had been given prior to his stem cells had knocked him out.

It was a very emotional moment for me as it seems that we have anticipated this day for so long and now it was actually happening. All the time the stem cells were tranfusion a nurse was present to monitor his obs, temp, blood pressure etc and all was fine all the way through.

Oliver was then given his next set of anti-viral IVs and some milk feed as he is still refusing to eat much hospital food and not drinking enough to ensure his kidneys are flushed. He woke at about 11pm so I then was reading stories until midnight when he eventually fell asleep. 1am he had his obs checked, again at 5am so you don't really get much sleep.

He is very grumpy at the moment he is fed up of being hooked up to all the machines and although its very upsetting and hard work for us, you can't really blame him! We have a play specialist, Cheryl, who is going to come in once a day to play with him, she started yesterday and he responded really well to her and the great news is that he actually wants us to leave the room. He clearly thinks we spoil the fun.

So, what happens now? We wait. Wait to see any chemo side effects and manage them the best we can, and wait for engraftment to happen. We have had much support from friends and family sending love and positive thoughts and messages, we are all willing the stem cells to do their job.

Signing off for now as I was on the night shift last night and am absolutely shattered.

Wednesday 6 May 2009


Had a rough couple of days, although we know its going to get MUCH worse. Oliver finished his chemo yesterday but was really sick. Vomiting all the fluid up we are so carefully monitoring. Then he slipped and banged his head in the afternoon. He had a massive tantrum as he is fed up of being 'hooked up' to machines, so at least he has still got some feistyness in him. I had to walk out the room as he clearly blames us for some of it,and I was so upset I didn't want him to see. The nurses were brilliant though and assured me that its nothing they haven't seen before. Last night he had a nosebleed about 1am so was changing sheets etc. Bless him he didn't even wake up. He is also still having night feeds to top his calories and his fluids up.

He asked to go home also yesterday for the first time which is very upsetting. Theres one little girl in particular he is missing -Gigi you know who you are!

The good news is they are keeping an eye on his platelets so will probably give him a top up today.

He starts on Aciclovir and Cyclosporin today, which are antiviral and anti rejection drugs, again he has to have this IV so hes not best pleased. Also got to change the dressing on his Hickman line and on his NG tube today so thats something we are all looking forward to... not!

Despite all this I do think he is tolerating it well for a child of his age. The toys we have bought him and gifts we have received are keeping him occupied though so I need to do a lot of thank yous as they have been lifesavers- Got to try to find a 'take along Thomas' now as hes been going on about it and I don't mind spoiling him at the moment. We have also received some beautiful cards and messages wishing us well. Its at times like this you realise who your true and genuine friends are.

Its transplant day tomorrow and we are looking at it as the first day of the rest of his life - a big day for sure.

Then we just hope and pray that the bone marrow his donor has so selflessly donated engrafts and we can look towards going home.

Going to try to get some sleep now.

Sunday 3 May 2009

Day -4

It seems the days are slipping by so not able to update every day.

Oliver had a good day Friday and yesterday, he gets another dose of his 2 chemo drugs today and then just one dose tomorrow and Tuesday. He got a unit of platelets overnight Friday/Saturday which raised his platelet count to 180K -the most he has ever been in his life even with other platelet transfusions. All his blood results are kept a close eye on and he has blood taken every day.

So far he has tolerated the drugs quite well although we know that he will probably still get ill after the chemo has finished. He has vomited once but I think thats due to too many sweets! After his magic cells or 'red gold' as my fellow WAS mum Susan calls it, on Thursday, he will begin anti-viral, anti-fungal, anti-biotics and anti-rejection drugs which he will have to stay on for a while.

Dave and I are taking it in shifts and we now have a single one bed flat so we can interchange who stays over with Oliver. I stayed in the hospital last night and it is very tiring as there is always someome coming in and out the room. Oliver is also having night feeds via his NG tube of High Calorie Milk. This is both to give him a boost calorie wise and to maintain his fluid levels as his is not drinking enough. We need to keep on top of his fluid levels to help flush his kidneys out because the chemo can be very hard on their kidneys.

Anyway, thats the news to date
Will try to keep updating
love to all

Thursday 30 April 2009

Day -7

Yesterday and today Oliver had 8 hour infusions of Campath through his Hickman line. This is to deplete his T and B cells I think to stop any autoimmune response to his new cells.
We have had a couple of tantrums which I suppose are understandable in the circumstances but none the less very upsetting for all of us.
Medically he is doing fine - he had a rash in reaction to the Campath today which we are told is not unusual but apart from that he is OK.
He starts the 'hard' chemo drugs tomorrow, Treosulphan and Flurabadine so we begin another chapter and a new worry that he will be ill with the drugs, all we can do is wait and see.
Met some other families who are all in the same boat but for different illnesses and it never ceases to amaze me how brave these kids are, it makes you feel extremely humble and ashamed for 'sweating the small stuff'.
I have started putting his medication down his NG tube and Ive got to say its a doddle compared to trying to take horrible tasting medication by mouth. To say I was scared of the NG tube this is a revelation for me.
Dave is holding up brilliantly, Ive shed some tears but not in front of Oliver so hopefully I can continue to have that level of self control although the hormones are all over the place with our new little one!
Will update again when I can
Thanks for following and caring

Tuesday 28 April 2009

Day -9 and counting!

We are now on our 2nd day at Great Ormond Street. Oliver was admitted yesterday and we have settled in as much as we can.
He had a canula put in his arm yesterday much to his dismay in readiness for his platelet transfusion this morning and for some blood tests. He had his platelets at 7am and went down to theatre to have his Central or Hickman line put in to enable bloods to be taken easily and for drugs to be administered without the need for any more canulas or needles. He has also had an NG (Naso-gastric) tube put in to help us ensure he gets the correct nutrition should he stop eating and also to ensure he gets enough fluid. This is because the chemotherapy drugs he will be receiving over the next week will put a strain on his kidneys so the more fluid he receives the better. The NG tube will also assist in giving him the oral medication which does not taste very good as it will bypass his tastebuds and go into his stomach.
All went well in theatre, although I cried my eyes out when he went to sleep - when he came round all was as it should be and both tubes were in successfully.
He is off his food, which I think I would be and he doesn't particularly like the NG tube but Im sure we can overcome this.
He never ceases to make me proud of how well he tolerates all he has to go through. We are trying to keep strong and positive although the next few weeks are going to be tough all we can do is help him through it as much as we can with our support and love. I know that friends and familys thoughts are with us and we thank you for all your messages of love and best wishes.
I will try to keep this blog as updated as I can

Tuesday 21 April 2009

5 days and counting


We are definately going into GOSH next Monday - 27th April.

Will try to keep this blog as updated as I can, depending on how things go, obviously.

Bye for now

Friday 10 April 2009

Good news from GOSH


Just got back from spending 2 days at Great Ormond Street Hospital and going through a round of pre-BMT tests. All is good and Oliver is fit and well apart from the symptoms of his WAS. We are still aiming to be admitted on the 27th April and his conditioning (Chemo) will start 2 days later. All still very scary but we had a look around the unit and the cubicles are a lot nicer than I imagined.
We were told that we could not wish for a better donor (apart from a sibling) we have a young, 21 year old male who is CMV negative which is compatible with Oliver.
Oliver will be on a slightly reduced intensity chemotherapy regimen but even so we are under no illusion that it will probably make him ill.
My pregnancy is still going well and we had a 20 week scan which confirmed all is well with the anatomy of the baby so now we know he has not got WAS, no chromosonal defects and low risk for spina bifida - this is great news.
Obviously we are now keen to get Oliver transplanted and home although we are aware that its not an exact science we are hoping he is mr average and we will be home in around 8 weeks.
Will keep you posted
Signing off for now

Tuesday 31 March 2009

News and slight date change


We are at Great Ormond Street next week for two days to complete Olivers pre BMT tests/investigations. We will meet some of the transplant team and have a look around the unit. Its all getting very real now. We are now looking at w/c 27th April or the week after for being admitted. Im sure we will be given a solid date next week. Still very scared when I read the drugs hes going to be on, but keep trying to think positive.

Other news is that we are having another baby!?!/ Not planned and a big shock at first. Im actually 19 weeks pregnant but have not told everyone until now as we have been waiting for test results. We both decided that if it was a boy affected with WAS we would not continue with the pregnancy. Harsh and a hard decision but we simply could not put another child through what Oliver has been through and as Im definately a carrier, we had to be sure. The good news is that we are having a boy and he has NOT got WAS! Also, another bonus is that from the sample I gave when I had a CVS, they have found out that the baby is a complete match for Oliver. We are still going ahead with the donor we have as it is such a good match and they don't think its fair to make Oliver and us wait. However, when the baby is born we are collecting cord blood should (hopefully he wont) Oliver ever need a back up. Also we would be willing to donate to anyone who needs it should it turn out we don't.

I will keep you all posted. Paige, keep us updated on Ayden!

Sunday 8 March 2009

8th March 2009

Well, its been a while since I last posted.

In November 2008 Oliver suffered a huge nosebleed which resulted in him having 2 platelet transfusions and a full blood transfusion. We nearly lost him. Thanks to the support of our local hospital and Great Ormond Street hospital, he pulled through and the bleeding stopped. Ive never been so afraid in my life. But our little soldier just keeps going and smiling most of the time.

Any doubts I have about transplanting Oliver fade away when I think about that dark week in November and we need to give him the chance of a normal life.

We have now got a donor for Oliver and are waiting for a confirmed admittance date for his transplant. We have been given lots of information from Great Ormond Street hospital, some of which is very frightening but I suppose we need to know all scenarios.
Oliver is now 3 1/2 and running us ragged. He continues to bruise extremely easily and we continue to have our heart in our mouths but hopefully this will be abeited soon.

We have been given a provisional date of 13th April - watch this space!