New Years Eve!

Well, should be out their partying, but decided to write the Blog instead! That dedicated. No, I can't be pulled out of my armchair to be doing the conga or any of those shananigans that go on!!!!
In truth, having 2 little boys means those days are on hold for the time being. We are just lucky to be at home with Harry and Callum, all under one roof!
Well it is the end of 2011 and what a strange year really. Our on/off house move situation was very stressful, within the first 5 months. Having eventually moved, we spent the summer enjoying our new home, but then, the unexpected happened and having had an awful October with Harry being poorly, and feeling like a neurotic mother beside herself, Harry was diagnosed mid November with having Neuroblastoma cancer!
We are coming to terms with this and the months ahead are uncertain, in terms of Harry's treatment plan. All being well if he meets his milestones, his tumour will come out end of Feb, then he will be classified as being in remission, but will then have another 9 months of intensive treatment to blast those final remaining faulty cells. In April he will have stem cell therapy to enable his bone marrow to regrow.
So an intensive year ahead.
I am very aware though that many people have difficult lives and have their own trials and tribulations to manage, so we are not alone.
I have certainly taken my recent experiences to heart and reflected a lot on what has happened. These experiences I feel though tragic, will enhance me as a person and enable me to understand to a degree I never would have anticipated, what the service users I meet and assess in hospital and their families go through. I hope that I can put my experiences into practice and provide an even better service to the people I meet within my job. However, the recent cuts to spending within public services, means that services are diminishing and being able to provide a decent service is going to become ever harder to achieve. Although, the key to getting services is recognising the need of the individual and understanding how crucial a service is to keeping a situation together, assessing the risks and putting a good holistic assessment together! That simple! Well maybe not, but persistance is also key! Passion too, as without that, well there may be no point!!!
Well beginning to warble on!
Well tonight was lovely meeting with friends for tea and watching our children run around and play together as 4 weeks ago, Harry would not leave my lap. However, tonight there was no stopping him having fun with his friends! He said he was worn out on the way home, but hopefully that means a good nights sleep into 2012.
His recent chemo drugs have been making him sick again on a night. In some respects it feels like having a baby again, having one ear out for him waking and saying his tummy hurts, which is our cue for running into his bedroom, turning his feed off and having a bowl ready for him to be sick!!!
However, to have him running around, compared to the sad, lethargic and in pain little boy we had throughout October and into November, is amazing!
We just hope that Harry continues to progress and remains the positive, brave, strong boy that he is. The fact also that we have the support of some lovely friends and good family means that we can provide that loving and secure place for both our boys and that will help us all get through this.
Harry's illness has brought to ahead the fact that our lives need to change. The shift pattern Paul has worked for the last 3 1/2 years, i think it is fair to say has taken its toll on our family life. He works 3 weekends in a row then has 2 off. But for 3 weeks we hardly see him, particularly while I have been working as the boys have been at nursery during the week, when Paul has his days off.
However, credit to Paul that he managed to get 2 job applications completed, one just prior to Harry being admitted to LGI and one completed within that whirlwind first week of Harry having all his tests and anaesthetics and us being delivered the mind blowing information around his diagnosis.
Paul as a result of his efforts had 2 interviews and was offered 2 jobs! He has decided, which one to accept, but the start date may be a few months away. The job still means shifts, but we should see more of him, fingers crossed!
So heres to 2012, new ventures, health, family and friends! x

29th December

Harry has finished his 5th chemo session. He was sick last night from the drugs so fingers crossed tonight is not too bad. He has not had this set of drugs since the beginning of his treatment when he was poorly anyhow, so don't know how he will react to these drugs. Back in hospital Tuesday for Harry to have his hearing tested and to have a kidney test. Only in for the day so not too bad. His NG tube has stayed in for a bit now so hopefully not tempting fate by saying that!
Here's to a good weekend.

28th December

Harry is in hospital for his 5th lot of chemo. This is day 40 half way through his initial chemotherapy treatment plan. We got mixed messages and Harry was due his chemo on ward 79 not 76 so traipsed up there with our things. It was really busy as people have been delayed treatment to enable them to have Christmas at home , therefore we seem to spend till 12.30 waiting for something to happen! We also found out that Harry's ultrasound had been moved from next week to today, which was great, but we were not told this detail until after Harry had chosen his sandwich and chocolate cake, which then had to be retrieved from a tearful boy! However the ultrasound was at 2pm so not too bad! We have got the information that his tumour is smaller, which is fantastic, hopefully have more detail next week once the full report is done and given to our consultant. We are back in next tues for a kidney and hearing test for harry so should meet up with the consultant then and get the bone marrow results too. I met with Sue the consultant this afternoon to discuss the next few months of treatment. Just as you are feeling positive about things, she highlights that Harry has to be rid of the cancer in his bones and bone marrow prior to the tumour coming out, which we know, but also to highlight that if he is not rid then he has to have more chemo, which we were also aware of, but if in this category then survival rate is lower!
Anyway, fingers crossed he is not in that category and it will be end of feb he has the tumour out, then radiotherapy for 3 weeks then high dose chemo and stem cell therapy. So April will be spent in hospital. He is actually likely to be quite poorly then and could be out of it a lot on morphine, so I think it'll be our spirits that will need lifting! To get that point will be a massive hurdle. Really getting to the point of having the tumour out will be truly magnificent!
Anyway back to today! Harry's blood count results have just come through and his HB is low so he will have a blood transfusion in between chemo treatments! I wasn't sure if they were dipping or if his fractious temperament at times was due to his cold. I think again my initial instincts were right! A woman's intuition!!

Boxing Day

Harry, woke up a few times in the night, but awoke in reasonable spirits, despite his cold and streaming nose! He and Callum played with their new toys this morning.
This afternoon, we went to Ilkley and we took Harry's bicycle. He actually rode it, a little hesitently, but this is the first time in a few months! He last took it out the end of September, but only had a little ride as he got tired and tearful, which was out of character for Harry. Now, looking back, we think this was the beginning of him showing signs of being unwell and tiring more easily.
Anyhow, seeing Harry ride his bicycle gave me the largest lump in my throat as you can imagine, because I really thought it would be months before he would be doing this again. Being able to get out with the boys again, even for a little while, was fabulous and felt a bit like the life we had a few months ago. Callum loved riding his trike too and was wanting to race Harry.
The day was finished by having heated up left overs in the form of a casserole, which Granny and Grandad came round to share.
A lovely day!

Christmas Day

Well Happy Christmas to all who read this and thank you for all your thoughts and prayers over previous weeks. We are touched by how many people have Harry in their prayers.
Well Harry did not have a good night and not due to his excitement, but because he has a cold and seemed generally unwell. He has had a few bad nights, so I was thinking that this is how he was going last time his blood count dropped and he was quite anaemic. When he woke he seemed quite fragile and emotional. He enjoyed opening his presents, but I must admit both me and Paul thought here we go, Christmas at LGI. We contacted a nurse due anyway at 11.30am to come prepared to take his bloods. He did go to church in between as I thought a change of seen may improve his mood, however his dad had to pick him up half way through! On his return, and having set his scalextrics up he became much brighter!!!
When the nurse came she thought his bloods did not need taking as he had brightened up and to see how he is when a nurse visits tomorrow, which we agreed.
The trouble is we do not know, what is general tiredness and cold and what is a result of him being anaemic. Also he is not able to have calpol or ibuprofen whilst on chemotherapy as this can interfere with his white blood cells, or the ibuprofen does anyway, I think paracetomal is not given without higher authority for the risk it could mask a temperature and infection.
Anyhow, having stressed out this am and been really worried, Harry actually had a reasonable day and so did Callum.
Harry enjoyed starting to make his lego police station and Callum enjoyed trying to interfere!!!!
So we did manage Christmas day in our new house!
We cooked a lovely Christmas lunch and we are now about to catch up on some TV with a festive beer!
Yesterday we also had a good family day with my sister and brother in law and had lunch at my mum and dads.
Fingers crossed for a good boxing day. Hope the weather is nice and we can get out for a walk, otherwise the festive food, will mean losening the old belt!!!!

23.11.12

Harry has had a really good couple of days. Yesterday we had Natalie and Michael to play in the morning and then met them and Sophie and Adam up at Tumble Town  a play centre in the afternoon. Harry was on fine form and loved racing around in the coupe cars and going down the slide. It was really good that he could play with his friends.
Today Harry had to be at LGi for 7.30am. So Grandma and Grandad came over to stay to take Callum to Nursery for his last day before his weeks Christmas break.
Harry had a bone marrow biopsy. This is a mid way test within his chemotherapy treatment plan. The test will either see if the cancer is there or not. In some cases the cancer has gone at this stage, so we hope and pray Harry's has, but if not he has another 4 doses of chemo prior to a retest. He has his ultrasound on 6th Jan to see if the tumour has decreased in size too.
Hary had to fast for the biopsy and it was hard telling him this morning that he could not eat or drink anything, however, he went into theatre at 9am, which was good, so not long before he could eat again. I felt quite emotional, as the last time he had his bone marrow biopsy he was so poorly. This time he was able to walk down to the theatre and afterwards, instead of lying very wearily in bed, he was sat on a nurses lap, having a story read to him, when we were able to go and see him in the recovery room.
The difference in him is amazing and this afternoon he has been able to play, I thought he would have been shattered after playing yesterday and from the anaesthetic this am. He did sleep in the car on the way home, but he has managed very well.
So we await the results of the biopsy, which with the bank holidays may take longer and not ready till Jan. However, Harry is amazingly on form, he does get weary and emotional at times. However, 2 weeks ago I would never have thought he could be so well, so the chemo is certainly doing something good.
I do feel a bit like I am holding my breath, as he could dip and have an infection at any time, as any kid can, but then Harry will have to have IV antibiotics and be in hospital for 5 days.
We did see a dentist in hospital for Harry today, and we learn about more possible side affects from the chemo and that is that it can affect the growth of his adult teeth, but we will deal with that if and when that happens! Along with all the other possible side effects!
Anyhow, for now Harry is really good, so we will enjoy it.!

21st dec

Not long till Christmas. Feel much less bar humbug about it all now Harry is home and he has had a good day today. I popped into my work today and took Harry. Callum was in nursery. Harry enjoyed the visit to  my work and all the attention, he was running around, but after about an hour was ready to go and zonked out in the car! We went to his nursery's Christmas party, which he mainly enjoyed, he felt overwhelmed at times, but stayed to see Santa - again and get a present. It was Callum who was the nightmare at the party and threw an almighty tantrum!!! My parents took him home, and I thought it was Harry whom I would be taking home early!
So a good day and may they continue through Christmas. My parents bless them have been organised and bought all the food for the festive period, saving me the agony of queueing up in the supermarket!!!! So thank you!