Jacobs Journey

A Mothers Diary – The story so far

Baby Jacob Giles, the highs and the lows!

A diary of Jacob Treatment from the initial symptoms to diagnosis by his mother Vicky. (Edited. Dunx )

Prologue

When Jacob was 12 weeks old he had his 2nd shot of immunisations, a day or so later his eye’s began to swell! And they gradually got worse, we took him to see the GP who said there was nothing to worry about and packed us off!! Without taking a temperature etc. or even an examination, as a few more days passed they got even worse so I took him back to the GP, we saw someone different who straight away gave him a full examination and was very concerned! She sent us straight to hospital…..the inital diagnosis of his huge red swollen eyes ( the lids not the eye-ball ) was an infection, so they did blood test’s and put him IV antibiotic’s. Jacob had no temperature though to signal an infection. On the blood test it showed he had low platelets and low HB, Borderline to needing a transfusion. They left the IV’s to run for 3 or so day’s and there was no improvement, his CRP levels were extremely high ( indicating infection ) but he never had a temprature.

After no improvement and several doctors looking at him they decided to change the brand / line of antibiotics and give him a lumbar puncture. He went through several canulars put in for blood tests and his veins were running out. Then after a few more day’s as the doctors had been rubbing there heads, it was thought he had a blood clot on the brain and so he was rushed in for a MRI scan, we had 24hrs of living with the thought he had a 50/50 chance of survival. This came back clear and with endless antibiotics his swellings were no better. After 2 weeks in this hospital and lots off uncertainty we were told they were transferring him to QMC in Nottingham under the children’s oncology, as they thought the lumps / swellings were  tumors!

We started all over again at a different hospital and still no thought to the immunisations even though I repeatedly said this had started within days off having them. So Jacob was put to sleep and had bone marrow aspirations taken from the bone, we waited for a week for provisional results that came back clear but more intense ones would take longer to be able to give a fully clear picture. Meanwhile he had more MRI scans and the professors continued to scratch their heads! Endless tests and eventually we came home still with no answers and the swelling was still so, so bad.

About a week later after being home I noticed Jacob’s eyes were getting worse and that one eye was bulging out, he also had lots of little bruises and platelet spots. So with David on nights and two other boy’s to sort out i made the decsion to take him back to the hospital. I knew he needed to be seen but when I spoke to the ward he had been on I was told I would have to take him to the GP or a A&E if I felt it was urgent. So off we went to the A & E at QMC in Nottingham. We didnt have to wait long before doctors saw him and he was been treated with urgency, a blood test showed his platelts were 21 and with the eye bulging and me trying to explane all we had gone through over the last 3 weeks to them to try and put them in the picture! Their instincts were that low platelts and a bulging eye = a bleed on the brain and rushed him for a MRI scan again but he needed sedating and you need to be starved for the sedation…..a sunday evening with the on call MRI scanner out and surgeons and people to read the scan instantly all on standby our baby was rushed in unable to sedate him i tryed to rock him to sleep. I got him off but once the scanner started he obviously woke, unable to do the MRI they took him to the CAT scanner where it would not give as good a result but allow them to see if they needed him in surgery there and then or not. So this wasn’t and it was decided to starve him from now ready for sedation and a MRI scan in the morning. No bleed showed it seemed it was purely inflammation, still with doctors and professors scratching there heads more tests and a platelet transfusion began!

Now only a few day’s before christmas they decided to tak biopsy’s off the swellings where they would keep him under a general rush the sample over to the lab for instant testing and wait for the lab to get back to them with whether they need more sample etc or not!! The next day Christmas eve we were told they had a provisional result ( Histiocytosis ) and that the nurse was on the phone to get him back into surgery for a hickman line and that they were starting chemotherapy instantly!! So off i went to speak to my other children and try and arrange someone to give them there christmas!! at and worried sick looking at my little baby boy cut up and needles everywhere i thought at least we can get him better now at least they know what it is and we can get on and treat him. A hour later the professor turned up to say based on provisional results they were not going to proceed with anything untill its confirmed and we could go home for christmas!! So straight back on the phone to the boy’s and family were coming home!!

They just wanted 1 quick blood test before we went so we sat while the result came back…by this time it was tea time, and we were told Jacobs Hb levels were to low and he needed a blood transfusion, so we waited for the blood to come and we needed a canular in ready for it, 7 attempts later off getting it in and it going in his head as he had no veins left we eventually get the transfusion up and running!! Completely exhausted we packed up his things ready for the off to make a 2 hr drive to the boys. 3 hrs later the transfusion had finished by this time it was 11.30pm!! Christmas eve was gone the boys tucked up in bed waiting for Santa wondering where we were! We got home, well to my mums, for christmas at 1am christmas morning with our very poorly sore little man.

From here I started keeping a diary and still with no diagnosis for 6 more months my frustration around the immunisations are apparent. I do apologise for some off my choice of words but pure frustration and months of this, writing it down was my only way off getting it off my chest!


24/12/08 –  Christmas Eve: After two platelet transfusions and a opp to take a biopsy we got a diagnosis, Histiocytosis – What type etc. we should know by Tuesday. Jacob had a blood transfusion before coming home just in time for Santa. We had a lovely Christmas spent with all our family. Jacobs eye is healing very well.

30/12/08 – The type of Histiocytosis they were expecting to find LCH,  has come back clear! They’ve told us they can’t find it and so they have sent the sample off to bigger & better specialists to look for rarer disease. If this is a good thing or bad thing they dont know. How long this will take they cant say, meanwhile, as long as he O.K.,  we just keep going back to the hospital to have his blood counts checked to keep a eye on when he needs another platelet transfusion. For now we can all be together and do christmas things!!

2/1/2009 – Went back for blood tests today and boy what a good job! His platelets had dropped from over 200 to 9 in less than a week!!!! I must say thank you to everyone who gives blood, I’ve been on a childrens cancer ward and seeing how much the kids go through, even just Jacob alone, makes you realise just how important it is to give blood. Still no diagnosis unfortunately, back on monday to check his levels again.

After the eye surgery
Christamas eve having a blood transfusion
Back home thanks to all the wonderful people who give blood, enjoying his new toy from Santa!


7/1/2009 – Had to have more platelets, Levels dropped to 12 after a transfusion 5 days before. Also a part of the sample has been sent to Great Ormond Street, meanwhile they want to redo the bone marrow biopsy as his platelets don’t seem to be holding at all. While he is under the general anesthetic they are going to put a central line into him, this is because he is going to continue to need to have frequent blood tests and transfusions. It will make life a lot easier not having to find veins every time to take blood and put cannulas in him. Also when they do find the diagnosis it’s in ready to start treatment. All this is to be done this Friday. I’m feeling sad and down at the moment and very tired.

9/1/2009 – Jacob had his operation to retake the bone marrow samples etc. fingers crossed we will get results this time! His got the central line in and all is working well, so far. I was extremely scared about him having it, but I know it’s for the best and already its been put to good use. The following morning we headed for home and after a hour of being through the door we got a call to say his hemoglobin was low at 5.9!! And that he needed a blood transfusion, but at least he’s got his new taps in now so it wont be too bad this time. We have an appointment with Professor Walker on Friday, but in the mean time if they get any results they will call. So for now just regular trips in the check blood levels and have platelets. He has recovered really well after the opp 🙂

17/1/09 – At last we seem to be getting somewhere! It’s completely clear now that the swelling and lumps are purely inflammation, nothing sinister! His bone marrow is definitely working OK, it’s just a case of something eating the platelets up  A LOT! They have now told us it must be his immune system working overdrive, sometimes when they get turned on they get turned on a bit too much, so his body is thinking it needs to fight something that’s not there! (I think, lol, it was all very confusing! ‘Autoimmune Disorder ed.’). So what they need to do is try and turn it off, they are giving him 2 weeks of steroids in the hope it will work.

Also his iron/hemoglobin is still low, they were going to give him transfusion again but then decided to leave it so they can get a better picture of how effective the steroids are, as he should be producing it all OK himself! They have however given him 3 months worth of iron meds to help with the anemia. He did need platelets as they’d dropped from over 200 to 12 again, in a week. I asked if this is going to be a long term problem, but he wouldn’t commit to say. He did say he would be surprised if in 3 months we were still here. I also mentioned yet again that it is too much of a coincidence that this all started 3 days after his 12 week immunisations! Especially as now they saying its the immune system gone A.W.O.L  that’s the problem. But “oh no! of course not!” MY FUCKING ARSE!

So for the next few weeks we just giving the meds and checking bloods and hope to see a improvement and get all this sorted at long last. Jacob himself is a little monkey and full off it, a happy and loving little boy :). They also took blood from me but were very vauge on why. Apparently to find a reason for possible things I mentioned and to find some sort off cure. I’m feeling very relieved to just get some definite answers and no that things are working and there is definite nothing on the oncology side off things at long last, after over 2 and half months we have got the all clear. 🙂 Thanks again everyone x

23/01/09 – Had blood checked today after 1 week on the steroids and his hemoglobin has come up from 6.4 to 8.5 so that’s really good in a week. Platelets were 41 when normally by now they would be about 9 or 12, so we have improvement 🙂 At last a Doctor agreed with me that it was the vaccinations that did something, as that is what they are designed to do, but that it just went wrong on Jacob due to the auto-immunity illness. However there no way of proving it! Jacob’s got 1 week of steroids left and we will just have to wait and see what happens after that, to see if things start to drop again, or if he will be OK. Also they will keep a close eye on him when he eventually has more of his vaccinations. The steroids are really starting to take effect on him now and he is getting a bit agressive and like he is having 4 red bulls a day, not milk lol. but its sooooo good to him happy and well. His eye rashes, lumps and swelling have all cleared up and he looks beautiful!

27/01/09 – After i got so excited and hopeful, SURPRISE! He had to have platelets today. they’d dropped to 11. It now looks like the steroids will not work and after this course I’m told there’s no point in giving him more, as it would have worked if it was going to. Pissed off. I’m now thinking there is no end to this and no cure. It may well suddenly come right one day, but that’s an if and when! Im feeling so angry, its obvious the immunisations are the root off this and ok no one was to know, but it makes me wonder just how many things like this happen that we dont hear about!

My baby has had endless operations, needles, scans, lumbar punctures, I’ve lost count how many times we had to starve him for sedation and I cant explain how it feels living with the thought for weeks that your baby might have cancer, or a brain tumor with a 50/50 chance off survival. It never ends. He’s now got Hickman line and cant have a bath, we cant take him swimming or on holiday, the simple things you take for granted. And all of this hell could be down to the fact that they pump too much in one go when immunising. Fuck the MMR, all off them is too much in 1 needle.

Of course we dont want our babies to get ill with diseases and we are lucky to have vaccines available to us, but at what cost? OK Jacobs case is rare and probably severe, but now with the thought that this may never be able to be fixed makes me so angry! I feel the docs wont explain anything or give a straight answer and is it because of the uproar something like this could cause, is it in their contract you must cover up all goverment fuck ups! ok i will Shut up now. Sorry!!

3/02/09 – Jacob had to have a platelet transfusion today after only having one 7 days ago! His levels dropped to just 6!! He had lots off rashes all over, platelet spots & few bruses, all symptoms of low platelets.I think we are lucky he’s not had a bleed by now though with them getting so low. They retested his blood 1hr after the transfusion to check that they are getting up to the level they should be at, not being destroyed instantly. They came back at 239, as what they should be. Im gutted he’s only been off the steroids for a few days and they’ve not helped at all. If anything 6 is the lowest he been so far. With regards to getting a full diagnosis and a solution I had better not hold my breath, if we get one at all. I don’t no maybe if it turns out his bone marrow is just not producing them a transplant would sort it!?! I’m only speculating. It was a awfull day there today and just thinking about it makes me well up! Seeing a teenage boy that we’ve seen regular in there come in, in such agony, was just awfull and a real shock, they gave him gas & air and morphine.

10/02/09 – Hello again only me! OK after only going 4 days between needing platelets again they have decided to put him back on steriods at a lower dose but for much longer i.e months. They are more leaning towards a condition of the immune system called ITP, if you want to no what this means just Google ITP in children the ITP Support Association is a good one to look at for more info, sorry i cant be bothered to explain it, lol. My bloods came back ok. Not convinced about the steriods and still no idea how long this could go on for.

19/02/09 – Yes its me again, lol. We saw Prof. Walker again today and few other people, they are not giving up on finding the true diagnosis. Like they said they need to no the full problem and a diagnosis for the future too, i.e. could he pass this on to his kids, are there any underlying problems that could be triggered by something etc. so they very much want to pin point and get a name for whats going on with him.

He’s got 1 of them doing some world wide research to see if any1 in the world has come across this! Meanwhile they took more bloods today to run few more tests on extremely rare blood and genetic disorders. And they’re speaking to other specialists too. We’re back in a week for these results, so fingers crossed we can get it this time. Also where they would normally transfuse platelets lower than 20 they don’t want to do it for him now, unless he goes below 10! So its’ a bit scarey.

20/02/09 – Hello again! Got a call this morning from the hospital to say that 1 of the bloods taken yesterday showed a low level of lymphocytes, if that’s spelt right even! They want to take more blood for a very rare a specific test, the lab can only do this twice a week and the sample has to be to them by 10am! Sounds very odd, eh? Nothing has actually been explained about this, so we will wait ’till Tuesday to have test amd find more out about it. If you Google this and put it with anemia and platelet destruction you get a few things, but like always nothing  until you get it from the horse himself. ha ha. Can’t help but get hopes up that we getting close to a diagnosis.

26/02/09 – Okay well still waiting on certain blood test results but apparently Prof. said he doesn’t think he’s going to be telling us he has some really nasty bad thing anytime soon! Although Jacob has low lymphocytes as well now, 1 of the tests has shown that part of the other form of it, is ok so its good, haemoglobin’s (I think) are OK, if they went through the lymphocytes things, it would be very bad he said. It does mean we have to be very careful of infection etc. as it could be very dangerous for Jacob. He thinks we will certainly have these problems for 2/3 years. And he can’t yet give us a full diagnosis but said basically its a blood disorder and if people ask what it is, he would say if he was us, its a rare blood disorder that’s yet to be named! His platelets were 15 today and he would normally receive transfusion at this point but he hasn’t as he wants to leave Jacob as long as possible, not much fun for us though as the risks off bleeding get bigger and bigger and the more he moves about rolling over etc. If he had a slight knock on his head it could trigger an internal bleed. So we can’t take holidays outside the uk, and anywhere else in the UK we do go, we have to inform the local hospital and carry notes, so should he need treatment they will know about Jacob and his problems. Jacob can’t go swimming and any infection such as chicken pox, could be a heck of a lot more of a problem for him etc. He has to give Jacob a preventor antibiotic for this reason now. And we carry the risk off him having a bleed constantly. So I have decided we are never leaving the house other than to the hospital, I’m making him a sponge helmet, and I’m trying to invent a bubble I can put him in to protect him against bugs and illnesses!! Can’t complain though 🙂 I don’t know it’s a fucking nightmare but its just how it is now. Meanwhile Jacob is full off it and growing and developing absolutely fine, you wouldn’t even know he had all this going on.

12/03/09 – Hello everyone! We went for meeting again today to get results from all the weird and wonderful tests, and there is nothing that is bad, wrong, a problem etc. It doesn’t mean a lot to us but the low lymphocytes and white blood cells test thingy, showed it’s the T Cells that are low! don’t ask me lol. Anyhow all this means he can get serious illnesses and infections,  it’s not particularly linked and its probably just a result off whats gone on all these months and has yet to recover. Whilst he’s been on the steroids for a much longer period he has still needed the platelets and transfusions, Despite the fact he’s only had a transfusion if he bleeds or his count go below 10 rather than 20, he’s still needing them at that level, so a type of transfusion that he has mentioned a few times now is a Immunoglobulin transfusion, that comes from over a 1000 donors and has a fair few risks such as fits, allergic reaction, fever, headaches etc. and a much higher risk off been passed things like HIV and things due to the amount of donors it comes from. The Prof. has decided to do it. It has to go in over 3 to 5 days at a slow rate that it will take 6hrs a day! All being well we can come home for bed and back in the next morning. They’re starting it this Monday coming, so I’ve got a long stressful week next week with lots off worries and hope!  The best possible result of this is he never has this problem again, the worst case is lots off illnesses a allergic reaction, contracting HIV and the fucking thing not making any difference at all. chin, chin eh?

23/03/09 – Guess what, it didn’t work!! We had a week off hell trying to juggle everything with the kids etc, spent approx 5 hrs a day with a 7 month old hooked up to globulin’s transfusion machine with his tubes with Jacob on a 1 ft long lead with him grabbing it every 5 mins and nearly ripping his line out. Therefore I couldn’t leave his side to get cuppa tea go to the loo nothing unless he had sleep! Stressed wasn’t the word. He had the 5 days so had a huge dose of it and its made no difference at all. A nurse came today to take bloods and he’s back at 12 platelets. The only good thing was he didn’t have any reactions. 4 months now this has been going on for. What now Prof?!

Lincoln 10k – Kate, Vicky & Neil just coming to the finish line, raised over £700 for the ward that looks after Jacob.
well done, and thank you! 🙂


07/04/09 – I’m gutted, whilst waiting on results to find out if he has Wiskott Aldrich Syndrome i have stroked his head whilst he was unsettled in bed tonight to find lumps on the back off his head/neck! Feel so down and numb.

30/04/09 – Today it was confirmed Jacob has a condition called Wiskott Aldrich Syndrome, he requires a bone marrow transplant to stand a chance of survival. We now move to Great Ormond Street in London where they will deal with giving him chemo and treatments to kill off all his bone marrow and do the transplant! I hope we can find a match. This dose not seem real its what you see on documentaries on TV. He now has 3 diff antibiotics to prevent him getting illnesses, we also saw a dermatologists and we have a new set of creams and washes to help control the eczema.


07/06/09 – Hi every1, Not much to report since the diagnosis so just a quick update! We have been to GOSH and met the Prof. who Jacob is now under, he very nice. Spoke about the transplant etc, they said Jacob has a fairly severe case and as far as they are concerned they would do the transplant as soon as. Lots more blood taken, not fully sure if some were for his tissue typing! or if we waiting for QMC to do it!  They want to give him immunolobulins every 2/3 weeks but through an injection that they will show me how to do it at home – this is to boost his immune system and although when they tried it to boost his platelet count it didnt have much effect they hope that by having it every few weeks it will keep his count at enough of a level that he wont need the transfusions as much. This is also because they want to take  his central line out as it is just keeping him open to infection, ( even though he still has never had any type of infection they are still obsessed about it) It would be soooo nice to have his line out and bath him properly he loves the water.



Not sure about giving him the injections myself though! He did say that things could change quickly for him and although despite it all so far he is still thriving and not getting infections it could change quickly for the worst. We are back in about a month to see them, maybe then they will know if there is a match on the register or not. They still looking at the x gene to find the fault etc when they’ve got that done they will look at mine to see if this is has been passed on or if his mutated x gene was something he developed. Meanwhile he is still full of it and happy as ever, crawling and trying to pull himself up 🙂 he can wave bye – say dadda, mum mum, kiss and is alway’s babbling. I can’t believe he is ten months in about week. Thanks again for all the fund raising ( Anthony Nolan actually had Wiskott Aldrich Syndrome! A lot off people think it was cancer, it was its what this syndrome develops into eventually!)

29/07/09 – Hello, well I’m in bed with swine flu 😦 Jacob doing well he had his line out and has been having the immunoglobulins every week by needle in his leg. He has been put on tamiflu too even though he’s not ill at the moment… if he gets ill he will need lots off antibiotics etc. possibly IV’s if he gets really bad. He is loving the bath and its lovely having him like normal with no tubes etc. no news on a match yet feels like its taking forever. Have had call today though from GOSH to say I am not a carrier of Wiskott Aldrich Syndrome! He has made this himself, it can be either as somethings start somewhere for no reason but usually its something passed on. Espeacially with it being the female x thats the fault of the condition so I was little shocked when I was told it is not me! OK I’m off to choke, sneeze, cough and nurse my head ache and aches and yuki tummy a bit more. bye x”

10/08/09 – Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! Today we have had some good news. They have found a 100% bone marrow match for jacob 🙂 they have done the further tests on this person and it a 10/10 match! This has now been passed on the the transplant team who will then contact us to arrange to go down and meet them, to disscuss all the ins and outs and hopefully offer us this treatment for him. He could be having this in a matter off months now! It all depends on the waiting list and prioritisation. I cant even begin to explain the emotions we are feeling, here are a few happy, extatic,  scared, grateful. It looks like a new chapter is on the horizon! I’m not particularly religous, but I must say, I have been asking my angels for this and I have took time out today to say thank you! Who is our donor? We have no idea but to me they are an angel!

9/9/09 – Hello again. Thought i would give a quick update. I have been learning how to do jacobs immunoglobulin injections over the last few weeks! These are peoples immune sytem, which they take from blood, they collect each one from over a thousand blood donors and he has them every week to help boost his immune system to help prevent it been weak and therefore developing cancer! He will be on these for a good while even after the bone m transplant. I have to put a needle in him draw the drugs up etc and attatch to a srynge driver they take 1 hr to graduarly go in. Today all the equipment came for us to be set up to do it from home i have been training in QMC hospital on 38 day care. In a few weeks we will be doing it from home, someone will come out the 1st few times to make sure we are ok and that we know what were doing. Meanwhile he is full of bruises due to low platelets, he is doing well otherwise, he still gets taken in now and again for platelet transfusions when he has a bleed or shows extreme signs of being about to bleed. Its a little scarey and surreal having all this equipment at home but I have got semi-used to putting the needle in… its not just a quick jab it stays in while the drugs gradually go in like during a transfusion. We have had no news from the transplant team yet so its looking like we could be getting a normal christmas this year instead of being in hospital with him being extremely poorly so I’m pleased about that, I think its looking like he will have this done next year 🙂 He could go downhill very suddenly meanwhile and we never know from 1 day to the next if he will suddenly bleed, get a serious infection or if cancer is taking a hold, but so far he is well considering. x x

Thanks for all the support x x

28/09/09 – Hi again, yep more updates lol. Jacob has been unwell lately, he keeps suffering with his bowels getting the poo’s and therefore he constantly got a very sore bottom. His eczema is bad too and his last blood count showed he only had 6 platelets which is nothing. In fact its dangerously low, however he did not have a transfusion as they need to only give them in an emergency, to stop any bleeds!! Meanwhile he is black & blue with bruising 😦 he has also come down with a cold and he did have small amounts off blood in his snot! We are just keeping a close eye on him.

Been so worried about it all I chased Great Ormond St up with regards to the transplant and to query the bowl situation, the good news is we have got a app on the 14th Oct to meet the transplant team and to see Prof. Adrian Thrasher 🙂 they have said he needs to have his stool’s checked for bacteria etc. So this will be done in the next few days and they might need to do further tests/investigate if it persists :(. But we are happy we are getting somewhere the worst part is feeling your on your own and that your been a over the top paranoid parent. So it was good to know we’re not and it does need looking at. It’s so, so, horrible seeing him in such states and feeling helpless, you keep putting the creams on and giving the meds but when it makes no difference to his condition or symptoms, it is very upsetting. Speak soon.

04/10/09 – Hi everyone, well what a day! firstly sorry for the spelling mistakes and i will do my best to explain and get this right! It’s all a bit complicated and we have had a lot to take in today…so I apologise if I get a few bits wrong etc!
We went and met the transplant man today at gosh after been kept waiting for nearly 2 hrs in the waiting room with a toddler.

We now know & understand the severity of his condition & where he falls in the scale off things……basically he is bad he has no wiskott protein at all putting him at the worse end of the scale! Based on this a transplant seems to be the only option. As we have been made fully aware he will run into serious problems if he is not treated, such as lymphoma or hemorreage or vascular heart problems & so on.
On the other hand the transplant comes with its risks and problems to! He has a 10% chance he might not make it through the transplant at all and a 80% chance of it been fully sucessful, so there is a chance things could still go badly wrong for him, just with the transplant alone.
I could list a few of the complications but I dont think I could explane it all well enough to make sense, Long term affects are he wont be able to have children & he may well need hormone replacement therapy when he hits puberty as the chemo damages the testicals & he may not be able to develop through puberty with or without hormone replacement!!
When docs sit telling you things like “Don’t worry we will give him morphine for his sore mouth.” etc. “We will look after him” “We no what will happen at what stage and we will be ready to deal with it” and “Dont worry about him being addicted to morphine we know how to weane him off it gradually” Things really start to hit home!

This is such a hard desision we are making, his life and future are in our hands and we need to make the best desision for him, and its not a easy one by far!!!

They said to expect 12 weeks in hospital if we get out sooner its a bonus, only 1 of us can stay over with him & they can only accomodate 1 off us, its a 3 hr drive for us with the london traffic so its going to be hard going, and not just for a few days or weeks it could be 3 months off pure hell. With two other children to consider and the worries of losing Jacob and the things he will go through. can you bloody belive it they charge you to use the washing machine there!!!

A box room off a coridor is going to be home with a put you up bed.
But how can I complain?
There are much worse of than us! At the end of the day our son had the best doctors on the NHS. So in retrospect I cant really complain.

Jacobs bone marrow donor has come from a 44 yr old male in Australia!!! Gosh would like the cells to be collected via despersing them through the blood rather than asperating through the bones as apparently you get better quality and quantity off them giving Jacob a better chance, however it is of course down to the donor himself and how he would prefer to do it. This magic gift will be flown over for our son 🙂 All on the nhs! I cant complain about that can I?

Our fears, worries and the reality is starting to kick in. They want to get him in to start the treatment in January 2010. So we have a few weeks to prepare for it and christmas.

9/02/10 – Hi all, we got here yesturday and got a little settled in, getting to find out where things are etc and all the ruels etc, Jacob was very good, he had canular fitted to take bloods & ready for iv fluids as he will be nill by mouth for a long time ready for theartre in the morning….so not much sleep as his iv machine was bleeping constantly all night as his canular kept getting stuck when ever he moved at all!!

So this morning we had to spend from him waking up at 6.30am till 11.30 passifying him with no food or drink and trying to keep his canular working so he would get the iv fluids & he needed it for platelets for the surgery. He could off been in theatre not long after 8.30am as they rang for him BUT even gosh cant manage to get platelets here in time despite them knowing he would be needing them & despite it been on mondays protocol off things to do ORDER PLATELETS!! anyway we got through it, he is currently laid in his cot next to me sleeping off the general ann, he seem’s a little sore & groggy he has the NG tube in ready this will be good as all his oral meds can go through it & he hates the taste off half of them so will be better for him, & its in ready for milk feeds for when he into the chemo. He has a 12hr infusion through his Hickman line tonight a pre med ready to start the chemo tomorrow. x

13/02/10 – Hi well things are going well, he been on the campath for 4th day today & the 2 diff chemos started yest! he was a little groggy late last night & this morn but he has perked up now 🙂 he had his immunoglobulins through the night, we were doing these at home here now he has a line they go through iv at home his dose was 8 mls here its over 3o mls!!! huge huge dose, his pulse was dropping low but he was ok, we shall see what the next few day’s of chemo brings, other than a slight reaction to campath thats the drug that destroys your white blood cells he got a very common rash nothing to worry about.

17/02/10 – Hi, things have been going very well, but the sickness started yesterday, he had his last chemo yest. Today Wednesday he has been very unwell, been sick & very sleepy etc. tomorrow is transplant day!! overwhelming & the time has gone so quick from coming in to now. He had a bag off platelets last night & its likely he will have red blood tomorrow. He is having feeds through his NG tube as he is not managing much to eat or drink now.He has been so brave & full off life & energy up to now x x

21/02/10 – Hi, Jacob got his new cells & a very good dose successfully! they expect a good & quick engraftment 🙂 Meanwhile tho Jacob has not been so good with the sickness continuing & the bottom end has been constant leading to him, even tho he was having more than his fluid target, running very dehydrated, it took the weekend doc to figure this out but we got there in the end. His body is not tolerating anything & he has had to had a lot off sodium put into him due to levels in the blood and toxins etc from pooing so much etc, its hard to explain. they seem to be getting on top of it now tho, however due to this he is nill by mouth & going onto TPN feeds this is total parental nutrition through his central line into the blood stream. How long he will need to be fed this way we dont know we will  just have to wait and see. It’s all common effects from the chemo, he has the standard sunburn rash to but that not bothering him. Also today his CRP reading is up not much but its an indicator off infection so he has started antibiotics & blood cultures have been sent. So for now the are just checking these toxin levels in the blood to do with the lack off sodium etc they are checking them every few hrs. Its been a tough few day’s seeing him suffer and not been able to do much for him, he has had a few tantrums where he has just had enough & is not his normal self but it’s not surprising what he puts up with & how he must be feeling x x

24/02/10 – well the rota virus is back! hence why he has been so poorly, but also he has a other virus called RSV, this is a respiritory one and the worst case is it goes to the lungs, so for this they have had to start him on a drug to slow down the virus spreading but, what it also slows down the engraftment off the new cells! So its not good, they need his new cells to come in and fight it but they have to give this drug but it will slow it down so its a catch 22 and a case of seeing what happens day by day, as soon as he starts to get some lymphocytes he will be able to start to fight the rota virus etc. Meanwhile at this stage off transplant they are adamant about keeping him nill by mouth and on the TPN feeds through his main line into vien, due to the gut problems. He still has the sun burn rash and he has a few ulcers in his mouth but they dont seem to be bothering him much. He is constanly hooked up to drugs and never has anytime off his lines so is very resrticted to his cot, some times he can be fairly full of it & others completley wacked out. Its just a waiting game now, today we are +6 day’s after cells. you would expect to see glimmer off a count around +10 to 14 day’s so were are eagerly awaiting it x x

28/02/10 – DAY + 10 Hi everyone, well Jacob has had few day’s off no energy and not wanting to move a whole lot but is generally ok, He has been pooing black old blood clots & they say its from the mucacitus where his insides have been raw etc from the chemo and its the old scabs and clots off blood shredding away! He is still on TPN feeds through the vien & will continue to be so till his nuetrophils / lymphocytes come up. Excting day today…….at midnight last night he had a glimmer off count off nuetrophils / lymp off 0.03 yer hardly nothing but its was up from 0.00 lol, but on the 6 am bloods they were nothing again, my theory is he has 2 viruses & as soon as he gets anyhting off such they are going to be off doing there job!! How ever he has made his own platlets 🙂 from yesturday his count was 44 today they had gone up to 60!! YAY as we all no the nature off jacobs condition he dosent make platlets to that level & the doc said it shows his new bone marrow has made them 🙂 wich is really good new’s as it shows us its found its way to the right place & is starting to work!!! We will wait & see what the next few day’s off counts show x x x x

04/03/10 – DAY + 14 Hi all….things have been going well, counts are comming up especially the platelets!!!!!! amazingly so! today counts were platelets 331, white cells 0.32, nuetrophils & lymphocytes to toady..0.08. 🙂 His hair has been comming out loads to the point where reluctently we had to shave it…..before he got a fur ball lol, Tea time today he suddenly spiked a temp off 40…so he been put straight onto iv antibiotics & blood cultures sent it could be some infection or it could be him adjusting to the bone marrow as its starting to kick in and come up! we shall see x x

10/03/10 – DAY + 20, Hi everyone! all has been steady & counts have come up nicely! they are currently holding around H.B 8.8 WHITE CELLS 4.45 NEUTROPHILS 3.46 LYMPHOCYTES 0.49 & PLATELETS 442. Trying to attempt to introduce feed’s again now very gradally he has started on 1ml off formulated speacial bmt milk feed through the NG tube off 1ml a hr!! so very tiny amount! just need to hope the rota virus done play up and he can tolerate it so we can build it up. The RSV virus has gone to his chest and he is still having the ribavirin in the tent at night to try and control it, he is having a chest x ray today. other than me accidently rippin his NG tube out this morn lol he has been in better spirits the last few day’s, so fingers crossed both the virus lay off him so we an get him built back up and on the road to going home!!!!!!!!

16/03/10 – DAY + 26, Hi all, things have been stable other than the odd temp and high blood pressure, he had been tolerating his feeds but as it got to 20ml per hr he made him sick so were just in the procces off either witching the type & or dropping the amount. mean while he is still sleeping in the tent with Ribavirin med & they are going to do a scan to check his chest & organs just to make sure things are ok with him keep getting temp’s. We got the new’s that he is 100% donor 🙂 FANTASTIC! and we are now aloud to take him out side in open spaces in his pushchair for a little walk 🙂 very excited!! so things are just been juggled so he can have free time off the lines, not sure what he will make off it all or how he will react when comming back in!! As he has not left this room for over 5 week’s now, But we are very excited to be able to take him for a short walk on a nice day…bye for now x x

25/03/10 – DAT + 35, Hi every1, not much been happening apart from getting fed up & stressed with trying to get him back onto feeds onto his tummy! after juggling feeds from 1ml hr to 15ml hr and it not working for 2 weeks & not been able to get hold of the dietician! ( how dare she have anuale leve) lol so i adapted it but he could only tolerate it at small dose for short time. Any way thats all been changed again & anti sickness drugs have been maxed out with a new taktic were trying again!! he will now tolerate 35mls off baby feed every 3 hrs taking half a hr to go in, doing this 5 times a day!! its a start & a long long procces as he needs to have 1000mls off fluid a day befor he can go home so feel like we will never get there……he managed more mls when he was born so it just goes to show you what a small intolerant tummy he has now & how long it will take to get him up to where he needs to be, he still on tpn via vien wich is giving him the rest of the nutricain he needs & fluids but we will need to gradually turn that down so he develops a thirst and then hopefully drink more orally to get him of the lines. Other than this last stage off the procces he is so so well full off fun & games 🙂 & fit in every other way to go home. hench the frustration lol, fingers crossed few more weeks off gradually upping the feeds & he will be at a level off telerence to come home 🙂 x x x

05/04/10 – Things not been so good, just as we had home in sight & discharge was been planned jacob got ill again 😦 not sur if its the rota virus playing up gvhd of the gut & or infection 😦 gvhd is graft verses host desiese where the graft recognises him as been foreign!! and attacks him. So they are treating for all so he on steriods for the gvhd and 3 types off antibiotics to cover for infection, he is loosing to much stool’s & his body is loosing to much of the salts bicarbs etc etc so his body keeps going into shut down & they keep pumping fluids & bicarb back into him. he is now back to nill by mouth and full tpn nutrician through vien & hooked up to meds all the time 😦 he is back on regular codine for the discumfort. we have set back weeks and home is no longer in sight, were drained & gutted we been here 8 weeks now & we have no idea off when things will pick up again! to top it off our car got vandalised & is going to cost 3 to £400 to fix it 😦 there are traverlers in / visiting the hospital & police say they never norm have any problems round here but recently the local pubs have had trouble & there been a spout off vandalizium! and the only change is traveleres in the area!!! As if you need it eh? please send jacob all your possitive get well thoughts he really needs it, we need some light at the end of the tunnel & for our baby to get well so we can get him home & back to been a normal little boy. Its hard to think we have done this to him by bringing him here….not all transplants are successfull what if we made the wrong choice 😦 what if he never gets better again x x x

14/05/10 Hi WERE HOME!! sorry i have not up dated recently! i will back track slightly…regarding GVHD they left jacob on gut rest for a while and then re tryed feeds with the view if it didnt work again they would do the scope and have look. Jacob had a few weeks off been fairly poorly and the feeds didnt work, at the same time skin GVHD became much more apperent covering all off his body. So they started treatment steriods and it took nearly 2 weeks to get him in for a scope!! so while his skin was graded at 4+ gvhd by the time he got a scope he had been on treatment for a while so it only showed mild to nearly none off the gut! after a period off been on the steriods we re tryed YET AGAIN with feeds starting from scratch. Fortunatly this time around it worked!!! slowly slowly we upped the amount off a fully digested speacial formula and he kept on toleratiing it 🙂 keeping him on a no wheat no dairy diet we were able to get him on enough tube feeds to come off TPN through (the vien nutrician). And he just kept getting better and better and more back to his old self 🙂 we got home on tuesday. with a stack off meds and over night feed’s and 4 bonus tube feeds for fluids through out the day! Mean while his liver functions have been completely off the scale due to drugs he is on so they have had to be changed meaning that while he is still on steriods for gvhd he still has to have 1 iv med 3 times a week!! so we are at our local hosp twice a week and London once!! but that will wean down fairly quickly. He is eating orally and we are gradually trying him on a little wheat & dairy…he just wont drink anything orally!! When we got home after 13 weeks Jacob couldnt remeber it innittally…i felt he felt it seemed familliar but he couldnt remeber it.. but as time has gone on its like we were never away 🙂 I cant tell you how relieved i am that things are now going so well, and to be back home all as a family. i no were not out of the woods yet but the worst is behind us all the worry the dred off not nowing what to really expect through transplant that bogs you down for months before you even get there!! all behind us and i feel the best i have felt since he 1st got ill at 12 weeks old 🙂 i cant belive he will be 2 in a few months!! We truley couldnt off got through this without the support we have had.

I would just like to say Kian & Rhianna will always be in my thoughts and so to there familys my hart goes out to you, whilst i never new these 2 children through out our time through BMT sharing the same experiances with both familys they are and always will be very close to my hart x x xx x x x x x x x x

Bye for now x x

Thanks again for everyone’s support x x

Vicky

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  1. […] more info see A Mothers Diary the Story so far… leave a comment « Sponsorship, Events and […]

  2. […] When Jacob was 12 weeks old he had his 2nd shot of immunisations, a day or so later his eye’s began to swell! And they gradually got worse, we took him to see the GP who said there was nothing to worry about and packed us off!! Without taking a temperature etc. or even an examination, as a few more days passed they got even worse so I took him back to the GP, we saw someone different who straight away gave him a full examination and was very concerned! She sent us straight to hospital…..the inital diagnosis of his huge red swollen eyes ( the lids not the eye-ball ) was an infection, so they did blood test’s and put him IV antibiotic’s. Jacob had no temperature though to signal an infection. On the blood test it showed he had low platelets and low HB, Borderline to needing a transfusion. Click Here For the Full Story… […]

  3. Latest News « Jacobs Journey said, on February 24, 2010 at 5:30 pm

    […] the full back story see Vicky’s “A Mothers Diary” Click Here… Possibly related posts: (automatically generated)Latest NewsLatest Kindermusik NewsNancy Fraser in […]


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