Time flies!

Well its now April 2011 and its coming up to two years since Olivers transplant in May 2009. He is doing great and just had confirmation that he can go to annual appointments at GOSH and can have his MMR which is great news.

We are now living in Jersey Channel Islands and enjoying our two boys. Oliver is at full time school and doing well and Adam is a little fire cracker! Im a member of the 'Jersey Friends of the Anthony Nolan Trust' have had a successful non-uniform day at Olivers school for the trust and am going to be involved in a recruitment campaign for a 4 year old little girl who needs a stem cell transplant. I think the trust will always ben part of our lives.

Im going to make this an annual post on transplant anniversary.

I hope that this blog has been of help to any WAS family and it certainly helped me in times I needed to purge especially during transplant.

Please don't hesitate to contact me about this blog, WAS or anything really. Thanks for reading love to you all
x

February 2010

Seems ages since I last updated. Our appointment at GOSH went really well on 27th January and they are so pleased with his blood results that he can now stop the immunoglobulin infusions which we are all happy about. He will continue to be monitored by Sheffield and Kings Mill Hospital via blood tests etc.

After a couple of months off the immunoglobulin, Oliver will beging his vaccination regime again. He will start from the beginning like a baby as all his previous vaccinations will have been voided by the chemo and the transplant. This means the hib, polio etc and the MMR. We need to speak to GOSH when we need to start this. They will then test his vaccine response and if he responds normally to the vaccines all is good and we just carry on. If he doesn't he will have to go back on immunoglobulin so fingers crossed.

Oliver started Nursery on the 6th Jan and he loves it. In fact he is ready for full time school really he skips into nursery which is lovely. Another milestone on our journey with Wiskott Aldrich Syndrome.

We have met another family from Newark whos little boy is in GOSH now having his transplant for WAS and we are keeping up to date on his progress bless his heart.

Dave is now working away from home permenantly which is hard but needs must.

Adam is lovely and he is now taking a few solids (well purees!) He is doing very well and I feel we are one step closer to being a 'normal' family -whatever 'normal' is.

Our next appt at GOSH is 27th May when Olivers Annual checks will be done. I will update before then obviously but will sign off for now.

2010!

Well its the 3rd January 2010 and can't believe that this time last year we were eagery anticipating a date for Olivers transplant. We have come a long way since then. Olivers CD4 count continues to rise and is now .459 which is coming up to the bottom end of normal. He starts nursery on Tuesday which is another milestone in this incredible journey he has been on.

Its mind blowing that he has been through more than most adults have in his four years and this never fails to astound me. During this arduous journey most people around us have been incredibly supportive. Apart from Daves employer.

They have or should I say the Director of the company has, made it incredibly uncomfortable for him even saying that he has not been an ideal employee because of the time he has had off with Oliver and that they 'would not stand in his way' if he wanted to leave! This is at best Shameful and at worst abhorrent to me as a human being who has compassion for others. Dave has ended up resigning. This coupled with the fact that they made him take two weeks holiday out of 2010 allowance for being in hospital with Oliver in 2009 so he could get paid (bills have to still be paid) and because he has resigned they have taken that two weeks from his final salary leaving us with very little before Christmas. Hardly a contender for employer of the year ?!? Do these people not understand that he wasn't going in for his tonsils out?

Anyway, as long as Oliver continues to do well we will keep soldiering on and try to put it behind us with the contempt it deserves.

Olivers next immunoglobulin is 14th Jan and we are down at GOSH again on the 27th Jan. Will update then.xx

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.

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

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 justgiving.com/shaunmilburn-run4oliver 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

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.