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.

D-1!

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.

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

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
D
xx

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

5 days and counting

Hi

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

Good news from GOSH

Hi

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
Deb