Friday, 30 March 2012

Results day again!

Well we met Harry's consultant this morning and we have received the news that Harry's bone narrow is clear! I cannot begin to describe how relieved we are and emotions are running high, but this time following good news!
The journey can recommence as I feel we have had to stop at a service station for the past 6 weeks whilst awaiting car maintenance so to speak and you know service stations are not the best places to be for long!
We can continue on our journey and there will still be ups and downs, but at least we are moving forward again!
The next goal is that Harry's stem cells are stimulated enough for them to be harvested. So again it's about the scores on the doors reaching the relevant numbers! They ate harvested 18 th April I think. Then if that goes well Harry is booked in for surgery on 24 th April!
So cooking on full gas again.
Thanks everyone for all your thoughts and prayers.

Thursday, 29 March 2012

Thursday 29.3.12 eve or results

Well it seems an age since my last blogg and I definately managed to leave last week behind. We did not get to the park last thurs, as we did not get home untill 4pm. It was a mistake returning home for the night as Harry did not want to return for his bone marrow test on Friday. I had to wake hime up and leave the house for 7.30am. It seemed a good idea returning home, when we thought discharge was going to happen in the morning, however restrospectively it wasn't as we got home in the afternoon! The bone marrow test finished me off for the week. It wasn't untill 11am, usually it is first thing. Having settled Harry into a music session in the playroom, he was promptly told his time had come for the bone marrow. I had to carry him/ dragg him to the theatre for his anaesthetic, which was done with gas. This event has not previously been a problem. However, I think Harry had just had enough. And so this time I did leave the theatre with tears rolling down my cheeks. I went for a short walk to pull myself together before returning to meet Harry in recovery 20 mins later, where he was just as distraught as he was when I left him. Well we got home for 3ish having picked up some pizzas in Sainsbury's on the way home and somehow spending £70 as you do when you only want pizzas!
We popped into some friends late afternnoon and Harry seemed to perk up a bit thankfully!
I have to admit all the emotions of the week had built up by Friday eve and I balled my eyes out!! However you will be pleased to know that things progressed and Harry has been amazingly well.
As said previously we have had a week without tests or planned hospital appointments and so we had a window to get out of Yorkshire and yes we seized it, a little unsure how Harry would fare, but the best tonic ever. Normality at last! We headed on Sunday to our friends who live in Stewarton, between Prestwick and Glasgow. A fabulous location and great hospitality. Our McMillan nurse had faxed a letter to the Yorkhill oncology unit near Glasgow, so they knew we were in the area in case it was needed. Our consultant was agreeable to us going too and knows the consultants there.
As it happens we did not actually need this facility as Harry has been on top form. The weather has been fabulous too. Callum and Harry could play outside with Adam on the Sunday when we arrived. Then on the Monday we went to Ayr and both boys played on the beach and even went into the water, which was so calm and has a very gentle gradient. A very safe beach and very Sandy. There is a great enclosed playground opposte too. It was a great feeling holding both Harry's and Callum's hand and paddling in the water with them, a far cry from the previous weeks events.
We have a friend, Jim, whom works in the air traffic control tower at Prestwick so daddy and Harry visited him there on Tuesday. Harry got to put headphones on and hear the aircraft talk to the controllers and saw a military aircraft take off! I took Callum back to Ayr whilst we waited for daddy and Harry, since I thought Callum was too young to go in the Tower and there was a great risk of him pressing every button going and causing a mid air collision. Callum and I had a lovely morning on the beach again. Callum stripped off and had great fun making sand castles and then knocking them over! We all met up and had fish and chips for lunch and sat outside this cafe. Who'd have thought we would have been blessed with such weather in March! We even had a BBQ that eve!
It was great to see Harry play with Adam aged 6 and Callum joined in too. On Wednesday they helped wash Max the dog outside with Ben, they loved this. Callum absolutely loves water, hence when given a hose he shreiked with delight, however would not wash Max and decided spraying everyone was a better game and shrieked even louder when the hose was taken off him!
However, partners in crime Adam and Callum managed to reconnect the hose later when nobody was looking and sprayed anyone going outside and consequently held us captive indoors until Suzanne outwitted them by sneaking up from behind and turned the water off!!! Boy did they all get told off as water got into the house! However, it was a great team effort!
Callum made us laugh too, when he put Adam's police helmet on that had a visor, he would lift it up over his eyes and shout, 'its only me!' As of course we had really thought that a policeman had enetered the building! It reminded me of an 'Allo Allo 'sketch from years ago when I think Michelle says to Renee 'it is me Michelle' prior to an embracement. Ok, I am showing my age now!
So all in all a good break and Harry really came out of himself and had fun, as did Callum. The only thing is Harry's appetite is still minimal, but to have him laughing and running about was just great. It just shows how normality and not treating harry any different gives him the response that he should just go and play and that is what kids do best!
We managed a few drinks out with friends Tina and Graeme on the Wednesday, whom moved that way last Oct, so we caught up with a few people.
So back to the title of this page, the eve of results. We know from last Friday that Harry's bones are clear of cancer, so it is just his bone marrow that needs to be clear to move on with his treatment. I know to face another 6 weeks of chemo will send us back into the depths of worry again, so we pray that we can move on and his bone marrow is clear! So home, and back to reality and that knawing feeling at the heart that had faded for a few days is back with intensity.
Everything crossed!

Thursday, 22 March 2012

Thursday 22 march

Harry's bloods have been taken this morning and we have the vital scores! Harry's HB has dropped to 7.2 so needs a transfusion and his platelets are at borderline level so he will now receive transfusions of both to top him in readiness for his bone marrow aspirate tomorrow. We should be home for the afternoon and hopefully the sun will shine and it'll be a park outing for both my boys!

Wednesday, 21 March 2012

Wednesday 21st march - service provision!

So we have reached the middle of the week! Harry will hopefully be discharged from LGI in the morning, that's the plan and should happen, but never count on it totally! Some normality, Harry and Callum can be reunited and hopefully a trip to the park so the boys can see their friends.
Harry has perked up alot as of yesterday afternoon.
He walked/ran to the nuclear cardiology department for his second MIBG scan(first yesterday), whereby he has to lie very still and the machine comes to about a cm from his nose. I set up Peppa Pig on his DVD, which he can't see, but listens to on his headphones. He wobbled a bit towards the end and when his head slowly slid out of the end as the pictures continued to be taken of the rest of his body, I repositioned the DVD player so he could see it. Slowly the rest of his body came through the machine and job done!
The powers of Peppa Pig continue to bemuse me, however still grip both my boys. This morning I managed to get Callum to eat his breakfast and get dressed reasonable effortlessly in front of Peppa Pig, then as said, she helps Harry through a big scan. personally I think Peppa needs a good talking to and a day on the naughty step wouldn't be enough, but i can't deny her powers!

Harry needed a wheelchair for the ride back to the ward as he was worn out! He has had little exercise recently due to being poorly. A porter came up and pushed him back to ward76. He looked like a little Emperor being driven in his chariot!

So last test is the bone marrow aspirate on Friday,may everyone pray that, that one is clear, as if not he needs more chemo. This 6 weeks has been very hard and so to go through another 6 weeks would be even harder as each round of chemo knocks him down more and recovery is slower. Each day this week it has been 'what are the scores on the doors George Dawes' with regards his blood test results. Oh how important they are. Harry has bed hovering around the transfusion point for his HB, however today it has increased naturally to acceptable levels. Yay!
He is also no longer neutropenic and his white blood cells have come up to acceptable levels. The GCSF injection helps increase these and is continued to be needed until his neutrophils come up to above 2.5, currently at 1.3, but rising. They were 0.03 on Saturday! Probably all a bit technical, but such vital stats to us these days!

So onto service provision! I awoke Monday feeling ok and thinking that our Playworker could come onto the ward instead of seeing us at home. I was pleased thinking that Harry would have some input from someone else. However not to be. After several texts/phone calls and eventually a phone call from the service manager I am told the workers can only see Harry at home. I found this difficult to grasp as thought the hours were attached to Harry not where he was. This is not the case. I felt pleased when the service was set up, 2 playworkers visiting fortnightly to give overall a visit a week. One was to do more pre school work with Harry. I had not realised that the service was community based and thus does not cross over when your child becomes an in patient. Just like the district nurses only see Harry at home, these playworkers come under the same umbrella. So I felt cheated to have invested time setting these services upto find that when Harry is in hospital he cannot access them. Since hospital admissions have been frequent recently and a 6 week stay fingers crossed on the horizon I felt let down.
HavIng emailed both my McMillan nurse and social worker I understand clearly why the cross over doesn't happen, but what about continuity for a patient. What happened to integrated services. The need for district nurses ends on admission, but one of the workers was designated to do pre school work with Harry, this need does not end on admission. Unfortunately education in hospital only commences when a child is of school age, which is in Septdmber, but in the mean time Harry is missing out on 15 hours pre school education a week. To get a couple of hours a week in and out of hospital would be great.
So the system is budget and department led, not needs led as always, when will this change? Integration of services is on the agenda for the future and how far wil it go I wonder?
I have now emailed education Leeds and will hopefully speak to someone tomorrow. So I am the relative that all professionals hate, pushy, speaking the loudest, pestering, but only to get the best service for my Harry. Everyone thinks I am banging my head against a brick wall and have never heard of Leeds education giving direct payments fur me to purchase a worker or for them to supply a worker. The only thing my social worker says they do is pay a nursery the grant. She says my nursery should provide input to Harry for the £131 a week they still get to keep the place open. I can't see them being able to do that,but will pursue and as always I will do the leg work.
Routine and structure I thought was the key to a child's behaviour and well being, well that ain't happening and no one seems to want to help me get that in place, or their hands are tied to do so. Systems, always bloody systems.
So, since I am on the receiving end of service provision I can quite easily say it is shit! Providing them is a much better place to be, which is where I am when working. I now know how frustrating the system is. I now feel so much for all those people out there who don't meet the criterua for a service, or whereby they have too much money to receive one. It is a very lonely place fighting on your own. When energy is needed to care for Harry, little is left over. I know how many people feel out there now!
Also, how hard it is to take information on board and understand the service provision. When we provide on a regular basis it is very easy to make assumptions about what the person has understood, or as we live and breath the stuff, easy to simplify the explanations, leaving gaps for assumptions to be made by the service user. I can appreciate a hell of a lot more why someone may ring 3 or 4 times to be given the same information. When in the middle of the crisis or in our case fatigued with the ongoing caring role, it is hard to listen and remember it all, particularly when after the workers have gone you are straight back into carIng and the situation is fluctuating. Your mind focuses on the current job in hand not the information just given, usually not written down etc.
I consider myself an intelligent women, some may scoff ha ha, but if I don't get it all then I know I am not alone!
So when I return to work, I hope when I have to repeat myself to a service user or their family I hope I have more patience, I hope when a service cannot be provided I am more empathetic and give a good explanation. Also when a worker says they understand, unless they have walked the walk of being on the receiving end I assure you don't. I can safely say this having been on both sides of the fence!
So the battle commences to get a pre school education for Harry. Watch this space for either further frustrations or successes! Of course if I am successful social services want me to tell them all about it, but if not I should think they want me to zip it. For our needs are not critical at this stage. It's only pre school education and stimulation, not currently life threatening or creating any significant harm.

Saturday, 17 March 2012

Saturday 17 th march. St Patrick's day!

Well another week gone on our journey to get Harry cured of his cancer!
To commence where I left off last Friday, Harry had the weekend in LGI whilst he had chemotherapy drugs pumped into him over a 48 hour period.
On the Saturday he awoke, bright and breazie, having slept through the noise of the crying baby at various points through the night, the beeping machines, the nurses coming in to check the baby etc! Whilst his mother had unfortunately heard all of this and as a result didn't want to start painting at 7 am! I managed a strong coffee and got Harry to watch his DVD player. But by 8 am Harry was very insistent on starting the tray of arts and crafts the play worker had put together the day before!
So I got his paints down and he commenced painting his mask. He had painted several pictures by 10 am and decided he'd had enough and wanted to go walk abouts. So we wonder down the corridor of the ward, Harry insisted on taking his remote controlled car, which has a good range on it, so much so he can make the car go round corners without him in sight and make people jump, or trip them up! So there's me pushing his stand, with his pump and chemo drugs attached, so he can have full control of this car! 1 doctor asked Harry what he'd been up to during the morning and Harry told her about his mask, so she asked to see it. Harry promptly went to get it, however when he saw the doctor she had her back to him and was about to make a phone call. Harry made the loudest roar he could, upon which the doctor turned round and seeing Harry with his brightly painted mask on, let out a small scream in surprise!
Harry thought this was very funny and proceeded to roar at anyone else passing by!
So full of beans and hard to contain on the ward, this animated Harry was unfortunately short lived this week.
As expected Harry has dipped as a result of the chemotherapy drugs and has reached rock bottom as I write this and we are again in LGI. They'll be charging us council tax soon if this government is anything to go by! But let's not get political otherwise the blog will never end!
So to begin the week at home Harry initially vomited a few times, despite the anti sickness drugs, then he has become very lethargic and fragile, as the days have passed.
His HB count was 8.5 on Sunday, so borderline in terms of being anaemic. Above 9 is much better. I knew this score would drop during the week and a transfusion of blood would be needed, but when exactly would be the best day to get his blood tested?
Harry was quite unbearable on Wednesday, very tearful and fragile, leaving him to make a cup of tea had become an issue. Like having an 8 month old baby having attachment anxiety issues, however you can pick them up and make the cup of tea with them under your arm, well almost!
Harry always gets very emotional when his HB count drops. I knew his neutrophils would be dropping too.
So on Wednesday Paul and I agreed his bloods needed testing, so I called ward 76 and requested that the community nurses took Harry's blood to see if a transfusion was needed. On thurs morning the nurses call and want to come fri, I knew if this was so that we would all be bawling our eyes out with Harry and the 'men in white coats' needed to be deployed to rescue us from insanity! So to avoid this I reiterated the need for Harry's bloods to be done that day. Alas, they couldn't come till 11.30 am and for some reason they could not take a blood match sample, which means if a transfusion was needed, of which I had no doubt it was, that we would have to wait 2 hours at LGI anyway before any blood could be ordered. Ranting now! So therefore, the quickest way was to take Harry to LGI ourselves, whereby there they take the blood match sample at the same time they take thd blood to be tested, meaning once results through, blood can be ordered straight away!
So voila, at lunch time it was evident that Harry's HB score was 6.9 and a transfusion necessary.
So we return home for 6pm!
I had hoped Harry 's transfusion would have perked him up, but with the knowledge that he was neutropenic again and therefore immunity low I knew I had little chance of keeping Harry at home.
On Friday, Harry had a very quiet day. Callum was in nursery as planned. This was needed as I couldn't cope with both of them, but a shame as I had seen little of him the previous day, as Paul was with him. Harry had a Playworker come and see him in the morning. This is a fortnightly visit as he can't go to nursery at present. Harry did enjoy this session, although quieter than usual, I felt it had stimulated him and was good that he had someone other than his family focusing on him for a while.
Harry's nose was like a tap and his temperature slowly creeping up. By Friday eve I knew LGI was definately on the cards, but could we get Friday night at home? I wasn't convinced, so having got a very tired Harry to bed, I gave some time to Callum, not knowing if I would see him in the morning or not. So Callum had a particularly long bath and played with his and Harry's boats and the little playmobil people.
So each time Harry awoke last night we took his temperature. It hovered around 38 degrees C, mostly below, but not above the magic 38.5 whereby IV antibiotics are commenced and a several
Day admission required.
Paul went to work this am and I commenced breakfast. Harry was in a very sorry state and having vomited in the night and now this morning it was time to face the facts! Harry's temp was 38.6! I could no longer deny that LGI was on the agender!
Mother's day, what mother's day!
My wish the night before was that we could just all be under one roof, that was my present, nothing more, nothing less! Not to be!
I did not rush to LGI as it was the changeover of shifts when I rang them and they had to go and do some bed shuffling to create an isolated bay as Harry 's nose has been like a tap.
I admit I did not want to leave Callum and so delayed the arrival on ward 76 as long as I thought I could!
However, once settled in, it is never as bad as I anticipate. I guess once I have readjusted my plans for the weekend and accepted the inevitable, it is ok. It has probably been the build up all week that has been worse! The knowing that Harry will dip, that he'll prob need IV antibiotics, but when exactly, which day and which hour would our family be torn in two again! I knew Paul needed to be at work, he has had lots of time off, needed to either care for harry in hospital or Callum at home.
This weekend is day shifts. With redundancies on the horizon, nobody can be complacent even if your child does have cancer.
So here Harry and I are, Callum has been cared for by my parents today and my in-laws have come up for a couple of nights to look after Callum, so Paul can go to work. Then Monday, Kate will have Callum for a bit and then probably my parents, prior to Paul's return from work, and that is as far as the logistiacal planning has got, quite enough for today!
So today Harry has had a platelet transfusion and is currently on IV antibiotics and IV fluids. His neutrophils are 0.03 and his white blood cell count 0.18, these instill immunity in our system and help fight infection. No wonder Harry is in such a lethargic, limp state! I pray that these potions can work their magic and our vibrant Harry returns for the end of next week. He has a week of tests ending with a bone marrow aspirate on the 23.3.12. Then we get the test results on Friday 30.3.12. So that means a whole week with no chemo or tests. Harry, should be at his optimum and dare I say it a trip away on the cards. Shhhhhh as someone might hear me and thwart our passage out of the county of Yorkshire!
So yes, today is St Patricks Day, I only realized this on taking a trip out of LGI to get some coffee and saw people out and about in top hats enblazened with 4 leaf clover! I live in such a bubble these days from the outside world!
However, my magic i phone - yes definately magic, now has a Kindle app on it and I have, oh yes, joined the techno brigade and downloaded a book!! Never, never did I think I would, but it is just soooooo easy! One click on amazon, 5 seconds later, yes it is there to view and read - magic!!!! Oh and at a fraction of the cost of a paper backed book! Oh and the other very exciting thing - I did say I live in my own bubble - you can downlaod free samples of books! Excellant if you are writing essays and want a feel for a book and can nick a quote and pretent the whole book was read!!!! top tip there for any students reading this!
So I have downloaded 'Loving Hannah: Childhood Cancer from the other side of the bed' by Carol Glover - Hannah's mum. She's a nurse practicioner, so she writes from the view point of being the client and not the health provider, a bit like myself! Anyhow it is set in North America and one very stark worry so far is whether Hannah's treatment is covered by their insurance. It is these papers that have to be shown prior to any commencement of treatment. Which leads me to be truly thankful that we still have the NHS. OK it is being chipped away at, but for those that need such treatment as Harry the financial cost is unimaginable, however covered without us dipping directly into our pockets. Yes we pay taxes etc etc, but my family do not have to worry about the cost of the drugs, hospital fees etc!
So tomorrow is Mother's day. My parents are visiting and will partake in the free Sunday lunch provided for by Candlelighters. So not so bad really. I just won't see Callum, as to bring him, means my parents could only stay an hour as the playroom is shut on a weekend and Harry is too poorly to tolerate his boisterous behavious for long. I know that he will have a nice time with Grandma and Grandad and just look forward to seeing him when I can.

Friday, 9 March 2012

Friday 9th match.

Well Harry is back in LGI for the weekend. We are infection and green snot free so that's good, but have to share a bay and so I fear a good night sleep will not be so. Never mind, I'm swapping with Paul tomorrow so should just be one night each, then home!
Harry said last night that he wanted to go on a train, so I said ok we'll go for a trip to Saltaire once Callum is at nursery.
So we went from menston and had to change at Shipley, which added to the excitement of the short trip. In all a 20 min train journey and the bonus of learning Harry is free to travel on trains till age 5, meant £2.90 got us to Saltaire!
Harry was very excited. The train station is next to the canal, river and park. We had a lovely potter about for an hour or so before returning home to have lunch with daddy before embarking on Harry's weekend in LGI!
Having felt to be in a better place this week, probably as come to terms with Harry needing extra chemo and also being in the middle of treatment, therefore not a lot we can do. However, we have Harry's next test dates and they are week commencing 19th march. So we may or may not have the results by the end of the week. I keep telling myself to accept that Harry will need 6 weeks more treatment, however in reality this is more difficult and I know I will be disappointed if Harry does need more chemo.
This chemo has led to Harry losing his eyelashes and eyebrows though he has kept some tufts on his head!
So the new chemo is doing something, we just hope it is blasting the cancer in his bone marrow. No, obliterating it. Perhaps we need the darlicts back to exterminate it!!

Wednesday, 7 March 2012


Harry's chemotherapy started Monday, so he is on course. So we are pleased about that. We are awaiting dates for his tests at the end of March.
Currently Harry is in really good spirits. He spends all this weekend in hospital. He should be home on Sunday. However, we are expecting him to dip again. I feel if we assume he ends up with an infection again and a hospital stay, then if he doesn't then that's a bonus!

Monday, 5 March 2012

Monday 5th March - anticipatory grief

So it is Monday and having enjoyed a weekend with Harry in fine spirits its back to LGI today for him. He has to have a blood test to see if his platelet score is 100, it was 30 last Wednesday. If not 100 he can't start his second course of TVD chemo today. Still awaiting to hear from Paul who is at LGI with Harry today. And no this score can not be increased via a transfusion, as the count has to be from Harry's natural reserves so to speak. So fingers crossed.
I have been struggling to identify with my feelings and understand them in some ways and so I have gone back to some books I have read when I have been writing essays or my portflio for my continous development as a social worker.
One book I layed my hands on is called 'On Grief and Grieving' by Elisabeth Kubler-Ross and David Kessler. This book discusses the 5 stages of grief, but before that it also has a chapter on anticipatory grief. Having read this, I thought bingo, as that is what Paul and I are experiencing. Within anticpatory grief you can also experiense some or all of the 5 stages of grief - denial, anger, bargaining, depression and acceptance. These different stages can be moved back and forth between too.
I can get accused of over analysizing situations or emotions, but I feel it helps to put them into context and understand them. Since Harry's cancer is so aggressive and we know of children who have relapsed it is staring us in the face that Harry may not survive, I have touched on this before I know and people will say stay positive or you shouldn't think of the worsed and yes there is hope for Harry as he is still on his course of treatement and has not been labelled as terminal yet!
However, we do store up dark thoughs and although they get pushed to the back of the mind mostly and I do want to enjoy the family life that we can have, such as this weekend, the thoughts are still there.

I will qive a quote from the above book which helps to explain how we feel:

Anticipatory grief is generally more silent than grief after a loss. We are often not as verbal. It's a grief we keep to ourselves. We want little active intervention. There is little or no need for words; it is much more a feeling that can be comforted by the touch of a hand or silently sitting together. Most of the time in grief we are focused on the loss in the past, but in abticipatory grief we occupy ourselves with the loss ahead.

This I feel somes us up. Paul and I watched Stella last night, the drama created by Ruth Jones. There was a scene in it where Stella's grandchild was born. I felt quite emtional by this and felt daft, because it was not the script that was making me emotional, but it brought back memories of when Harry was born and the life we thought was ahead of us. After the program had finished, Paul and I spoke and without me saying anything Paul spoke of the birth of Harry and I realised that it was not just me having those thoughts.

I have talked before also of grieving for the life we used to have, but from reading the above book, Kubler-Ross talks about grieving the fantasy. This is what we are doing too. Everybody has a fantasy about how things should turn out, about their hopes and dreams. We all know these get adapted along the path of life's journey. However, we never thought that our fantasy of family life in our new home, would get halted so quickly and turned upside down. We thought 2012 would be the year of us making the most of us taking out of season holidays before Harry started school. It would see us camping. Also it would see us settled in our new home, sitting back and relaxing having friends to stay etc. etc. We need to grieve this fantasy as currently it isn't happening. That is not to say the above won't happen.Although out of season breaks will come to a halt with Harry commencing school. In fact our hope currently is that he just starts school.

Grieving a fantasy comes into play in many situations and can be identified perhaps when a new born comes on the scene. The anticipation and day dreaming of how life will be with a new born can often be very different in reality. I think I felt this a bit when Callum came on the scene, as it was very diiferent to when Harry arrived. I was in a state of Eurphoria with Harry for the first 3 weeks, then the lack of sleep kicked in! With Callum it was entirely different and much harder to cope, however we got through it and Callum is an ace little boy. However, the first year plus was very hard.

I am getting off track, but I guess, what I am saying is that grief and loss and the loss of fantasy is interwoven into life in general. Many people have experiences leaving them with these feelings. I am just trying to put some identity to our feelings at present. I guess also to give affirmation that our thoughts are natural and ok to have!
In our society it feels to be emotional and show our feelings can illustrate weakness. However, I disagree and feel that to identify these feelings and understand them equips us to be stronger and move through life. If we don't deal with our emotions and understand them at times, that is when we risk being 'broken' so to be speak!

Thursday, 1 March 2012


The beginning of a new month today and the sun shone!!!!!!What a beautiful Spring day. And yes Harry is out of hospital. He came home last night.
So determined to make the most of today, whilst the sun shone and Harry was well, Harry, Callum and I (daddy had to work), went to Harewood House. We had a lovely time. Harry got a little weary walking up the steep slopes and Callum whom is usually adverse to sitting in the pushair (but is used more of a cart these days), decided he wanted to sit in it, as did Harry and so there was some fighting as to whom needed it the most! However, we enjoyed the trip and lunch in the Courtyard, which with the blue sky above, always gives the feeling of being abroad!
Both boys had a big sleep in the car and Harry had enough energy to meet his friends in the park this afternoon. Being out in the open always reduces the risk of catching colds and infections, so a good place to meet. It felt like the good old days when we would meet and the kids played. Lovely. You never know when Harry will be hospitalised again, or when he will feel unwell, so these days have to be seized. It is a good while since we have been able to have such a day.
There was an air of excitement too as our Summer Charity Ball planning has gathered momentum and we will have posters and tickets available for sale from tomorrow! My friends (Ayshea, Jenny, Claire, El and Steph) and myself have all worked hard to make this event happen! A little uncertain in the beginning, especially when we needed to club together to put down the £500 deposit needed, without knowing if the event would be a success, but a leap of faith I feel my friends have made to support my eagernees to go forth and put a ball on! As I am such a planner it has given me lots to think about other than Harry at times! So all we need you guys to do is purchase the tickets and we will do the rest!!

Please open the link below to get details of the event!