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

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.

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.

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.

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.

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.

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 http://www.sickchildrenstrust.org/ 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.

D+4

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

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