Readjusting to being home!

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So, we have been home for a few days now. Our return home after 3 months in hospital has been just fantastic! But since coming home, I have got to be honest, I have felt a  bit disorientated, not quite adjusting as quickly as I thought I would to the outside world!  I think we have become a little institutionalised!!
Although we did not have a great many things to unpack, it seemed to take a long time getting all those items washed, dried and incorporated into their usual places, at home. They just didn’t seem to fit in any more! Of course, since February, there has also been a change in the season, and it was really strange coming home and adjusting, let alone to find appropriate clothes which were cool enough, yet warm enough to match the changing spring temperatures! But I like to think that the Spring  kind of held on for us coming home!
But what I really want to know is, what has happened to our dinner trolley? And why do we have to wait more than 4 hours to eat our next meal??? I soon realised that I had to keep remembering that it used to be down to me to prepare our meals! The first meal I rather enthusiastically threw myself into preparing was a roast chicken dinner and apple crumble for desert. All started very well, but then as the minutes turned into hours, my enthusiasm suddenly waned as my timings went awry. Dinner and my sanity were rescued by Phil on his return from work, opening doors and windows to let out the black smoke!!!!
But it is great to be back in my own kitchen (well, I think I have got to say that, girls), to have all the kitchen bits and bobs that you need at hand, instead of always having to improvise!
The other notable change for me was that we have changed our car. Its a bit more advanced than our other one in that it has seemingly ‘reassuring’ green warning lights to inform the driver of economical driving and flashing blue lights when not driven so economically. Well 3 months seems a long time not to have driven…..but I will try and see if I can master not making the engine roar with a gentlest touch of the accelerator pedal, and  somehow switching off those flashing blue lights!
Of course, the spring has made all the flowerbeds, tubs, and baskets look a bit sad and dishevelled, so that has heralded another job to be done. That one is a real pleasure though, to be out in the fresh air. That’s one thing you really miss – when your door to the world outside is many floors away,and along the corridor and down an elevator….and even then, there is no grass to be seen!! Mind you Alfie and I always enjoyed our roll and stroll times in Regents Park.The people watching was almost as fascinating as the marvellous gardens themselves!
Since returning home, convalescence continues for Alfie. He is taking each day in his stride, and continues to do well. The main difference is that in the hospital we were surrounded by so many people all the the time, and on our return home it is much much quieter, as all Alfie’s friends, of course, are all at school. But it is half term next week, and Alfie is hoping to catch up with many of his friends as convalescence permits.
Henry has just contacted us! More later!
xxx

We are home!!!!!!

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Great news! Alf has now been allowed home! We will be attending the follow up clinic twice a week in London, to ensure the good progress continues.

We were allowed home after the clinic on Thursday of last week. Phil came to pick us up by car, as Alfie is still not allowed to use public transport yet. We will need private transport door to door whenever we go anywhere.

Although Alfie is not now neutropaenic, his immune system is still intentionally suppressed by the medications he is taking.  This is because in order for Henry’s donor cells to continue establish themselves successfully in Alfie’s body, those cells involved with recognizing “foreign” cells must be suppressed, so that they stay calm and continue to thrive in Alfie’s system. Alf has been on two different immunosuppressant medicines at the same time to prevent ‘graft versus host disease’ (GvHD). He has now been reduced down to just one type of immunosuppressant medication, which he takes twice a day, morning and night.It is the blood levels of this medication which are monitored weekly.

Once Henry’s donor cells have fully matured in Alfie’s system, the Bone Marrow Transplant team (BMT team) may then consider reducing the levels of immunosuppressant medication that Alfie is taking. As I think I may have already mentioned before in one of the previous posts (sorry if this is repeated!)

Alfie may be taking immunosuppressant medicines for an indefinite length of time to prevent GvHD. So, while he is on any this medication, he is a little vulnerable to infections. So we just need to ensure that he is protected from any unnecessary infections – for example, if anyone has a cold or an infection, it would be best for Alfie if any contact is simply postponed until the infection has passed. Similarly we will be avoiding any crowded places. For example, he can still go to the cinema, but not when it is crowded…but public transport is completely a ‘no go’ at the present.

Alfie has his first session with his private tutor this morning, so I need to go and encourage him to burst into action, so that we get there on time!! More later today…..

xxx

Good daily routines , weekend leave, and impending ’empty nest syndrome’

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Alf continues to make steady progress.We have established a good routine while here in ‘Halfway House’. Somehow our days our really busy, although there is just usually the 2 of us to consider in that daily routine! We are glad to have been able to stay just around the corner from the hospital, especially when we have needed to be admitted in a hurry, usually when the nausea and vomiting became out of control. It was good to be able to have quick access into the ward where we were known well, and we knew all the staff. It made it less disruptive going back into a familiar place.
 
Alfie’s blood results are all settling into a much more normal range, and accordingly, he is much stronger, and has more energy.But we still need to ensure that he keeps a good balance of activity, and yet ensure adequate rest, too. I really love to see Alfie achieving
longer walks, eating a substantial meal, then sleeping soundly afterwards! That just embodies the process of recovery to me. I try to ensure that Alfie has a proper rest period in the afternoon, no noise,(no TV/iPod etc)…..Yep, I’m mean! His afternoon sleeps used to last a few hours, but now seem to have settled to just an hour, plus. 
 
We were allowed home over the weekend….it was wonderful! Sussex is so green and lush compared to the concrete Capital! Home was even quieter than ‘Halfway House’! Also much, much quieter than it usually is without Henry being there (now discovering New Zealand), and quieter still with Sam being out of the house for approx 15 hour days, doing his bit in helping to turn out Michelin star food at Amberley Castle for the fortunate and hungry!
 
Arriving home was both amazing and daunting, at the same time. It was inspiring to see the turn of the season (from the windows, as it mostly rained all weekend),lush greenness opening up before our eyes! Phil has kept the gardens in excellent order, all ready for us to think about transforming the flower beds and get the little veggie patch going again. 
 
Not so easy was to walk around the house knowing Henry won’t be around until August! As Henry was packing and preparing to leave it was a busy time for all of us in many different ways. I had envisaged that I would help him pack and prepare for his travels, but it was not to be! He did a great job anyway, and has since arrived safely and is having an awesome time. Not that we hear from him very often, (Dodgy internet access??…yeah, yeah.) To be fair the last e mail we had was great, informing us of all that I wanted to know, but also those things I did not want to hear….’Skydiving was so cool! Bungee jumping next!’. But I am glad that he is at last achieving all that he had wanted to do, in finally joining up with his friends on his gap year travels!
 
One of the surprisingly daunting things was seeing Henry’s room left ‘frozen in time’, exactly how he left it! I sat at his desk and glanced at his packing list, the discarded slippers, the ‘Keep Calm Save a Life’ poster on the wall, and well wishing cards given to him before he went into hospital. It was then how I knew how I would spend my weekend……spring cleaning the bedrooms!
 
It was both tedious yet satisfying! The spring cleaning seemed to deter some of the pangs of impending ’emptying nest’ syndrome, that seem to be pursuing me at present. It just felt right cleaning up to prepare for Henry’s August Homecoming, rather than look at his room feeling that he has just left! It will be lovely and comfy for him when he returns! have a great time on your travels Henry, you deserve it! Just keep safe (there, said it!)
 
Alfie, had a non-stop fantastic weekend. He caught up with just a few of his friends, as our weekend leave was short notice. Sam D, and Big C (Chris R) were round like a shot! And the next day, Chris accompanied Alfie with quite a walk to the BP garage for some sweets,on the way to the park, where he met with Jamie and Angus…and had a go on the swing!!
 
Coming back to London was harder than anticipated, trying to re-adjust to a newly learned – yet quickly forgotten routine back at ‘Halfway House’!
 
 x x x

Highs and lows, and the May Bank Holiday

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This passed week has been a somewhat disjointed week, with some highs and some not so highs. We are thinking about my lovely brother Jim this week, and sending our love to him and his wife Elaine. Jim has not been so well over the passed few months, but at least, now we know what we are dealing with, and hope to commence treatment in one form or another really soon. You are a star Jim…..and as the song goes, ‘You’ll Never Walk Alone’, ever. Big luvs to you, Bruv! X X X
 
We have had some very welcome visits this week a few friends and family which made the week go by, beautifully. On Saturday we had a visit from Tom and his Mum, Fran. Great to see them both. Alf and Tom had quality PS3 time, while Fran and I had quality coffee and catch up time.
 
On Thursday evening Fiona and Ollie came to see us straight from school. We planned a pizza supper. Ollie, and particularly Alfie,  were looking forward to this. In the 30 mins before they arrived, Alfie said he felt really tired, and a little nauseous. Prompt action was required, and Alf had his 2 different nausea tablets (which were about due in the next half hour). Alas too late, a significant episode of vomiting then occurred. I contacted the emergency ward mobile, and within minutes of poor Fiona and Ollie’s arrival, they were joining us in returning Alfie back to the ward.
 
A little nausea/vomiting doesn’t sound so bad, but it can very easily make Alfie really dehydrated, and just as bad, it means he cannot tolerate his medications. So he would need to be admitted overnight. Alf and Ollie were both gutted, but understood why. Alf really was not very well overnight, but was hydrated with fluids overnight, and given the appropriate medications intravenously to sort him out. He awoke the next morning feeling hungry! 
 
We went back to ‘Halfway House’ after Alfie had kept down his lunch the next day. It was great to see Ollie and Fiona, thank you both for all that effort to come and see us….at least you had the ‘Grand Tour’ all in one evening, of all the venues that have been home to us for the passed few months!!! x
 
However, Alfie did at last get to enjoy the pizza he missed out on when Nan and Grandad, Catherine and Tommmy, along with cousins Joe (and Sarah) and Molly (and David) over the weekend. We were a formidable group, who walked in procession behind Alfie – being pushed by Grandad (Grandad didn’t even crunch the kerb with the foot plates like I often do!) It was great to see everybody, it felt right that we had the raised ‘top table’ in the centre of the restaurant! Alfie had been wanting to go there since his admission to the ward, but could only go when his neutrophils were at a certain level.
 
We have had some wonderful ‘Rolls’ and ‘Strolls’ in Regents Park ( I roll Alfie there, and then he chooses the place where he will stroll). The flowerbeds are a riot of colour now with all the tulips and spring flowers springing into life! If short on time, we just head for the flowerbeds and do laps in that area of the park.
 
bye for now xx

Thinking about home……..and all the wonderful people we know!

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Alfie and I often chat about home, and it leads to chatting about all the things we miss about it.

The main things we miss are regularly seeing all the lovely people we know. The simple freedom of going about our usual day to day life, and being part of a normal routine, in which we see, so easily, all those people who share parts of that daily life with us. This is so precious!

We have become part of a different routine and system, while here as guests of the NHS to receive Alfie’s treatment at UCH. We have made wonderful friends with staff, with fellow patients, and their carers. Wonderful people that we would never have met, had it not been for our shared circumstances while on the ward.

We have made many new friends while here, and have been privileged to learn so very much about valuing what we have. Having the opportunity to step into a sphere which has opened our eyes, and we have seen, first hand, what some people cope with – without any choice. At first, having no inkling that it will change their lives forever, so drastically.

What is amazing is how, we, (as humankind), just find a way to carry on, not without massive challenge and difficulty, but do eventually find a way, somehow, to get back onto our feet, and continue to adapt to the situation that has befallen us. This is where the true value of those special people around you, come in. Carrying you forward while you are adapting to the change. People really are wonderful.

Obviously at times like this, those who are closest to you are there, playing their part in supporting and carrying you in many different ways. But there also, at the same time, lovely friends, individuals, even acquaintances, who you know as part of your regular life – those who come forward to become an important part of that wider system of support that has carried you through that journey. Just a simple message, can mean so much. These messages have all served to fill in the ‘chinks in our armour’ and make us stronger, and feel glad – and all the better to have known – that they are out there. Thinking of us. Simple things like that mean a lot. Such a lot. XXX

Establishing new routines and the management of fatigue. 5th April 2013.

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Since my last blog, it has been a busy week, so little time to update! But I will capture the weeks events by the end of the day today, in a few posts….here’s the first one……  
 
So, what is new for us?? We have settled into a new kind of routine here at ‘halfway house’. It is so much more relaxed than the ward routine we had come to know.
 
 We have far more control over our own day, though, the agenda for our day is quite rightly set by Alfie’s needs.
 
It is much more relaxing for Alfie, here. He sleeps really well, 8 to 10 hours solidly at night, with an afternoon sleep of approximately 2 hours, this has become the present norm. We have come to learn that it is the management of fatigue which is key to Alfie’s recovery.
 
Each day for Alfie has to be stimulating enough, yet, primarily needs to have all the ingredients to make him recover physically; regular prescribed medication, plenty of fluids to keep his kidneys in a happy balance, and keep all the chemicals being flushed out of his system, and nutritious foods to maintain his growth and energy.Alfie obviously also needs some physical activity, which is governed by the bounds of his own capabilities and energy levels, at this time. This brings us back to managing his fatigue – so of course plenty of rest to help him cope with the demands of the day, is so important.
 
So what we have done is to look at this logically. We chatted with Alfie and looked at how many hours he had ‘awake’. But this needed to be divided up into the essential things (routines of daily life…eating/drinking/mealtimes, bathroom, dressing, medications). Now after this we have the real sum of time that we have left for other things.Thing is all the Essential activities listed accumulate to drain Alfie’s energy before we even begin to add in all the fun and recreational things! If not managed well by Alfie, all of these activities could become imbalanced easily.
 
Even the activities which Alfie would value as ‘chill out’ time, could be used up doing, say, only playstation/TV/Facebook without any time put aside for anything else. So Alfie needs to negotiate, with himself, what he wants and needs to achieve, supported by Phil and I.
 
#Ohno! Does that mean there is less time to be spent watching all those quality programmes Alfie has come to know like Family Guy, American Dad, Come dine with me….. ???? (‘Quality TV Mum!….’, ‘I think not Alf!’)
 
We have also discussed the gentle return to activities with a more academic focus…..but more about that in a later post!
 
Much love from us xx
 

A brief relapse, readmission to the ward, and the fine balance reinstated

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We moved into our convalescent half way house a week ago. It has been wonderful to escape from the inertia of daily ward routines. Our room was so tiny in the hospital, especially considering how many weeks Alf had stayed in that room, without being able to even step outside!! We have had more control over our day to day routines, so we have been able to be more flexible, fitting everything around Alfie’s needs.
 
Our new accommodation is so quiet, especially without Alfie’s skinny girlfriend (drip stand!) It is a luxury to be able to sleep comparatively undisturbed at night, without the drip infusion alarm going off so regularly! 
 
Other advantages of being here other than the ward are that we also have the convenience of laundry facilities, so are more independent. It is a lot more convenient than sending clothes home or going to the local laundry!Breakfast is optionally supplied, and we sort out our own meals throughout the day. There is a dining area with an attached area with a basic kitchenette counter. We can reheat prepared foods there. We consider ourselves expert in Sainsbury’s chilled/cooked range of products, and have become really good at adapting bought foods into more healthy options, adding fresh vegetables and fruit. Phil (our main link with the outside world) has also brought in chilli or lasagne or spaghetti bolognese cooked from home – a relished treat!
 
We do now have a lot more freedom during our day, within the confines of what Alfie feels able to do. The wheelchair has been a boon. At least we can wheel him to different places to walk his 200 yards (as this is all that he can manage for now)! Alf still tires really easily, nothing has changed there. But we are learning to help Alfie to manage his fatigue, so that he doesn’t
overdo it, and is able to pace himself so that he can get through the day without using up all his energy in the first few hours!
 
We still are having to encourage Alfie wear his facemask when getting about, because of the traffic and road works.Also you never know what bugs there are out there, which can be airborne and potentially breathed in by Alfie when passing by.Reducing the risk will be a particularly important issue for sometime for Alfie, particularly until we are allowed to get all of Alfie’s childhood vaccinations redone. 
 
Alf had a sudden set back the other day, and I now fully realise the importance and the value of staying in the ‘halfway house’! We were back on the ward within the hour, in the safe care of the Bone Marrow Transplant Team. Alf’s relapse being promptly treated. I have never been so glad to have rapid access to such expert support in the NHS! It had been going so well, and Alfie had been making good progress, but it all changed so quickly! The team were fantastically reassuring, and greeted us back, promptly reinstating Alfie’s  metabolic balance to what it had been previously. 
 
It was very scary, Alfie’s newly achieved, balanced picture of health changed so violently and quickly. I know that I have discussed before the importance of the fine balance of all of Alfie’s medications, and generally the role of each of all those medications in maintaining the status quo of Alfie’s present health status. Well, this episode taught us how finely balanced it all is! 
 
Alfie was originally on 3 different kinds of anti emetic (the medications which prevent vomiting and nausea). These were originally prescribed to help counterbalance the nausea, (we think) caused by the longer term immunosuppressant. Why so many? They cleverly work on different receptors within the brain, effectively giving multi dimensional relief from nausea and vomiting, as when these symptoms take hold, they can be quite difficult to unpick, and can put a dramatic halt to any medical progress being made.
 
Obviously all medications have side effects, and so it is good practice to eliminate as many unnecessary medications as possible.And so, one by one the anti emetics were reduced. However, Alfie’s nausea and vomiting insidiously returned. Alfie awoke that morning, not feeling incredibly hungry. It was the very hot day we had least week, and so we put it down to that, and felt that some fresh air would help, also Alfie had eaten a hearty supper the night before, and put that down to a contributing factor too. Alfie vomited after taking his morning medications. He does tend to take them all with gusto (not sure how he manages to take them so promptly, more or less in one go!) However, we carried on and attended our usual daily appointment at the Macmillan Centre around the corner. Alfie says the only good thing about his facemask is the fact at it keeps his face warm on the colder days! Alfie was quieter than usual, and I had just thought he was tired, (as he had comparatively busier days in the preceding 2 days). Alfie has daily weight checks, and had lost just less than a kilogram that day, it was noted, and we were advised to get in touch again promptly, should we need to. Alfie had said he just wanted to get out into the fresh air after the clinic. So that is what we did. 
 
Alf had tolerated drinks and sips of fluids over the next couple of hours, but not as much as usual.He had not needed to pass water either for a few hours. He had not refused fluids, just deferred them ‘for a minute’, he would ‘have a drink in a minute’. I know that if Alf says this, he really cannot not manage it at that moment. Then, he started to vomit violently, the whole of his face and scalp turning bright red, hardly being able to stop. Within minutes he became really tired and lethargic, then, dropping off to sleep within minutes of the vomiting episode.I contacted the Macmilllan Centre immediately, and the told me to come in at once. Alfie said ‘ok, in a minute,Mum, I just need to sleep!’. I manoeuvred the docile, lovely, heavy, tired, sleepy Alfie into the wheelchair and raced around to the centre.He could not easily open his eyes…nor stick his tongue out for the doctor to see! This happened so quickly – minutes! It was scary! Alfie just wanted to be left alone to sleep! Intravenous fluids were started immediately and quickly. The fluids were run into Alfie’s veins at once. He was like an almost empty vase, the water running in.
 
It might be nice having your own independent routines away from the ward in ‘halfway house accommodation’,…..but it is great to be able to get back to the safety of the ward routine, and the professional expertise of the doctors and nurses, promptly when you need that care!!!
 
Alfie was admitted back to the ward……we were even glad to return to Alfie’s original room, which happened to be still vacant since we left! Alfie’s observations and intravenous fluids continued throughout the night, and eventually, what was being poured in was being passed out, after the precious rehydration of Alfie’s body had taken pace.
 
Alfie’s overnight recovery kept pace with the amount of fluids that was given. His pulse and blood pressure were quite high overnight, and we kept an eye on this, and it was settling by the following day. One thing we were glad of was that Alfie did not get a high temperature, a sign of potential infection, which was the other risk which was being observing for.
 
The next day, eyes and face very puffy, but sense of humour and good spirits still intact, Alfie was wondering what we would be having for supper that night. I considered what might be on the menu at Sainsbury’s chill/fresh counter that evening, something I could reinforce with a few greens and carrots. At the same time, considered the importance of the 2 new anti emetic medications I needed to include in Alfie’s medication regime!  
 
We are now back into our independent routine in ‘halfway house’, Alfie’s physiological balance maintained. All very much the wiser to how close Alfie needs to be observed! A little like a heavily loaded wheelbarrow, steady in our safe hands, but it does not take much to send it off balance. There is a fine balance to be maintained. 
 
We all keep our eyes and minds on that fine balance! XX