Thursday, 29 November 2012

29.11.12 progress!

Well, I'll make this blog more concise and less garbled than the last! Even I lost myself reading the lost one back recently! Guess it just illustrates my frustrations, the complexity of the various systems we deal with and with it the many people!

Well last week Harry had platelets on Tuesday, the community nurse came early on the Monday to take his bloods, so we avoided clinic that day after all! In fact the nurse who took Harry's bloods on Monday is our new lead nurse, who seems lovely, empathetic, understanding and most of all sensible! Yay! Just wish she worked more than 2 days a week, but feel got some stuff straightened out! At last!

So Harry had platelets Tuesday, then went to school for the last hour! He then did a 3/4 day on the Wednesday, so we thought lets go for the whole day on Thursday! Well it's a plan, so inevitable not to be! Harry has had a terrible cold and he had catarrh on his stomach as well as his feed. I gave him his medicines, but he was complaining of tummy ache and feeling sick, when I gave him his anti sickness, which I had started to wean him off, he was sick as soon as it hit his stomach, thus immediate vomiting and yep, his tube comes out! daddy's day off and you guessed it, daddy's turn to take Harry to LGI to have it refitted. Who'd have thought snotty noses have their bonuses, well cos he needed isolating and I don't think there was anywhere for him to go, his tube was changed immediately! Thus getting home for lunch time and with a charismatic Harry back on form, school it was to be for the afternoon!

So our achievement last week was that Harry did actually attend school for some part of every day!

We saw my sister, her husband and baby Olivia at the weekend, as well as having a pre christmas family gathering on the Saturday. The boys love their only cousin!

I wasn't sure how the boys wold be at the family meal, but they actually managed very well! A bag of toys to entertain them helped too!

So onto this week, Harry's bloods were taken at home on Monday, before school. the results showed that Harry's red blood (HB) was fine, but his platelets were 25, so having had a discussion with the nurse in clinic it seemed perfect to join a visit to LGI on Thursday with a visit to the clinic to test Harry's bloods again, but really assuming a platelet transfusion will be needed. Since May harry's platelet scores have not maintained themselves, a typical side effect of all the treatment Harry has had and as a result 9 days has been the greatest length between transfusions, so very fare to expect Thursday to be another transfusion day!

We write off Thursday in preparation for a day at LGI and tell school that Harry won't be in.
We arrive in clinic prior to Harry having his dentist appointment and his bloods are tested via pricking his thumb and squeezing a thimble of blood out. The results are ready when Harry returns from the dentist, whereby he had a tooth sealed. He was brilliant and very entertaining in the dentist's chair! Anyway, the blood results said that his platelets were 28! It also said that his neutrophils which were 0.85 on Monday had jumped to 3.4! Well I read them in disbelief and really believe that they are another child's results! We go from knowing Harry has a cold and with his neutrophils dropping again, we fear an infection could be on the horizon, to seeing figures, which are great for Harry! 28 is still low for a platelet count, but transfusion levels are below 10! I expected them to be about 11 in which case they would have given him a transfusion.

So completely flawed regarding the results it's the other way round to 2 weeks ago. Harry had woken in the night and seemed to be symptomatic of needing platelets, but the scores said not. 2 weeks ago, I had been sure he'd not need a red blood transfusion, but the scores said yes! So I don't know where I am any more! However, this time the scores are a very good sign of progress! I discuss the results with the nurse and since Harry's port did need to be accessed for a liver functioning test, they agree to retest his bloods! This is just to affirm to me that there had been no mix up! We await some medicines from pharmacy, but even these are made up and dispensed promptly! Not wishing to spend the day in LGI, I just had to replan our day, but in a good way! Home by 2! Harry has lunch and the decision made to skip the last hour of school in exchange for making buns for the school Christmas fair and making Christmas cards for friends. With Callum in nursery, it was actually lovely to spend time just with Harry!

At 5 pm, I contact clinic to get the results of the second blood test, the scores are slightly lower, but still indicating that no transfusions are currently needed! Progress, Harry's platelets are at last holding up for longer, next weeks treatment will shatter them again, but hope it gives for the end of treatment, that they will recover albeit slowly!

So we hope everything holds out till Monday, when Harry returns for his 3rd immunotherapy treatment over 5 days.

Sunday, 18 November 2012


Harry's second immunotherapy treatment went much better than his first. He was in less pain, on less morphine and therefore overall more alert. He still had some arthritic pain and he got a temperature, thus the commencement of antibiotics and he had some water retention too and diahroea, but all in all it was not to the same degree as the first course. Now Harry has commenced gaberpentin, the pain relief that was missed the first time and this could have helped, but it could have been that his body just adjusted better to the transfusion of these foreign cells! There are no guarantees that the third dose on December 3rd will be tolerated just as well, but each day or course that goes well is a bonus. Harry's recent stay in hospital was definateley made much more tolerable due to the new toys that arrived on the ward as a result of the money raised at Tiger, Tiger in October, from the gig that The Senetors and Al Perry did, so we say a big thank you. We had requested some playmobil toys for the ward and a good selection arrived, which Harry was keen to get his hands on! He has not played with all of it and he will look forward to seeing the rest in December!
Since Harry did so well he was discharged home at tea time on the Saturday, 10th Nov. Harry was also released from isolation that day, so he could actually go in the playroom! This meant I could chat with some of the other parents. I got talking to one mum, whose son had been diagnosed with cancer, but had yet to find out the stage it had reached and therefore had no treatment plan. This is probably one of the worst places to be, as to know your child has cancer takes a lot off adjusting to, but to not know exactly what you are dealing with, makes you think all sorts, plus there is no battle plan for you to focus on. This mum was very worried and like a rabbit in head lights. I spoke to her at length and she discussed the fact that if her son has no treatment and she just took him home, then he would die, she also wanted to talk about how the actual treatment would make her son very sick on the other hand too. However, she saw Harry run up and down the corridor and he is proof that following a year of horrific invasive treatment he has quality of life and energy to enjoy himself again! This seem to give her hope. What did struck me though is how the nurses just avoided talking to her, it was a weekend so there were no social workers around to talk to her, I am unsure of what capacity the Mcmillan nurses have to talk to families on a weekend, but she was quite young and from Scarborough so family and friends distant and her feelings of being alone with a massive journey ahead, was mind blowing for her. The lack of people to talk to on the ward, when your feelings become overwhelming at times, is a serious issue I feel. Nurses see themselves as just nurses and don't get involved with the empathetic side. The occasional one does, but most see themselves as their to just deal with the clinical side. However, much of the time you are bottling up overwhelming feelings that you have to suppress to often be able to care for your child and just get on with it, but the times when the cork explodes, there is very limited support to help you refocus your feelings into more positive energy.
So with Harry home on the Saturday and managing much better than the end of the first Immunotherapy treatment, Harry goes to his friend, Adam's birthday party. He is cautious about the idea of going to all of it, so we turn up late. Harry does play, but is also quite clingy to me and quite emotional at times too. Overall a success I thought though. However, someone commented that Harry seemed out of soughts, but to me he was so much better than at this point last time, that to me he was doing really well. Its just that when he is really off it, well we don't see anyone, so nobody sees what rock bottom is actually like!
So since Harry made a birthday party on the Sunday we decide, although his immunity is still low, he should go to school, so he goes for the afternoon. As he does on Tuesday and Wednesday. Well I think we are rocking and are lulled into this false sense of normal and start to make plans for the rest of the week based on Harry being at school. That's where the mistake lies! Harry had his bloods taken on Wednesday, by the community nurse visiting school to train his teachers how to do his medicines down his NG tube. We had agreed, or so I thought that the school would do 2 medicines now, to enable him to stay all day. Not sure if there had been a communication error, but this came as a bit of a shock to them, but after discussion or probably more me matter of factly saying he definately needs the 2, to stay all day at school, well we get there! So after medicine training, Harry has his bloods taken. The community nurse had been told they were needed for pre chemotherapy, and of course I am saying no, we have finished all of that, but whatever, they just need taking to check his red blood count, since this was borderline being anaemic on Discharge home last Saturday. The bloods are taken and sent to LGI. When I ring Wednesday night there are no results on the system to plan if any transfusions are needed. Thursday came and to be honest, Harry was not symptomatic of having low red blood cells and as nobody from the ward contacted me, I thought all must be good. I decided to just check his results at 11 am to be told that his red blood had dropped and he needed a transfusion and since the ward had no beds I should immediately take Harry to clinic, so he could get a transfusion completed before they shut at 5! Well firstly Harry was in the middle of a home tutor session, secondly the community nurse was arriving at midday to train the teachers re: medicines again, and without Harry the training could not take place. The sister in charge of the ward said I should just cancel the community nurse, rearrange this and come to the ward. My reaction was to be very angry, as the hospital system just thinks about themselves, their constraints and has no regard of what happens in the community, the lengths I had gone to, to get to the point where Harry's teachers were trained to complete his medications, so he could stay all day, whereby if I cancelled, it would probably take till Christmas to rearrange and I would definately be rocking backwards and forwards in a darkened corner. Thirdly, I had  Callum with me and wrongly I had told him it was a mummy day. As said I was just getting into the pace of a routine and had wrongly thought that Harry would last out till the week after for a transfusion. The other piece of information the sister on the ward informed me was that a crossmatch was still needed prior to a the transfusion commencing. Well this is whereby a blood test is needed, even though Harry's blood type is known, prior to a red  blood transfusion a crossmatch sample is needed to ensure the blood chosen is of the correct match for Harry. As Harry is in receipt of continuing health care the nurses in charge of Harry have changed. The previous lead nurse, knew following months of pushing, that when a full blood count has been requested, that a crossmatch should be completed at the same time. I have probably lost you all reading this, but the point of doing this is to save repeat bloods being taken and tested and time wasted, whilst this is done, meaning only one set of bloods are taken, then bingo the transfusion can commence! Well, as said this piece of the puzzle was missing, but the sister on the ward inferred this would not take long. I am adamant that I cannot come immediately onto the ward, the sister is not happy and says that as they are full, Harry would probably have to go to another ward to finish his transfusion. I accept this and so say that we would arrive in clinic around 1pm. I hastily ring a friend to have Callum, as the thought of entertaining him and Harry on the ward for 5 hours, fills me with dread, Luckily El is around and Harry loves Michael, his buddy, so he is actually happy about the change of plan. I inform Harry that although he is in his school uniform that actually the only bit of school he is seeing is the room, where the teachers will be trained to do his medicines. He actually takes the change in plan rather well too, it is me who still feels very angry at the response from the sister on the ward, who thought I could just drop everything! Particularly as they should have looked at Harry's results in the morning and rung me if a transfusion was needed! If that had happened, we would have known our plan for the day much earlier!
Having got my head around our change of plan, you can imagine my utter fury, when in clinic I am told that only the crossmatch blood test could be completed and we would have to come back Friday for Harry to have the actual transfusion as we would not be finished for 5pm! I explain about the discussion I had re transferring to another ward to finish the transfusion, to be told 10 minutes later that there were no beds anywhere, so we would have to come back on Friday! The thought of coming back and Harry missing more school, just made my previous head rush of becoming normal vastly evaporate away! I literally crumbled and I could not stop the tears rolling down my face in utter despair and I guess the realisation that our lives are still very much not our own and despite having 3 weeks between overnight hospital stays, getting Harry to school for a whole week will still be an impossibility! I think what aggravated me even more was the fact we saw a community nurse at lunch time, I could have organised for her to do the crossmatch and then we would have only needed to attend LGI on Friday. The sister we spoke to clearly had no idea if there was a bed on another ward, this could have been checked out prior to us getting there and then at least I would have known if the transfusion was viable. There is no planning and well why should we want a life, hey lets just be at LGI. A little thought and foresight goes a long way. I think again I go back to the fact that the nurses are just concered with their remit and part of the equation, have no concept of the bigger picture, which is very sad. Maybe in part due to lack of adequate staffing, meaning nurses have so much to do within their remit of well being a clinical nurse, that to expand on this would quite literally break them, I am not certain. It could just be lack of training and awareness.
Well I sit in the oncology clinic feeling broken once again. Possible the idea of being at LGI 2 days in a row and as said having no routine and state of normal still, just reiterates the converstaion I had on the Tuesday with my manager and HR about taking 3 months carers leave after Christmas, to see me through till the end of Harry's treatment and retests and the plan for post treatement! I keep thinking could I return to work, but this situation clearly tells me no. I can't get back to work with the continued frequency that Harry still needs transfusions of red blood and platelets and the unpredictability of the days this will fall on, coupled with the incompetent system that is LGI, I have no chance!
Having had a chat about my grievances with out Mcmillan nurse I pull myself together again! However, a telephone call Friday morning angers me again. A community nurse rings to organise a visit the following Wednesday so they can take Harry's pre chemo bloods as requested from the hospital! Well I am frustrated that the right hand does not know what the left is doing and explain again that regular blood tests are needed as Harry's counts keep dropping on around a weekly basis, but it is hard to predict exactly each week, which day his bloods should be tested. The nurse I spoke to was going to get in touch with the ward to get a full update on Harry's situation. I feel Chinese whispers would  formulate a better communication system than what I am being involved in at times! I also explain that Harry is due a red blood transfusion that afternoon and with this they would repeat his bloods to get a score on the doors regarding his platelets and then from that it could be guessed more accurately when his bloods need checking again! I try and get a telephone appointent with my consuktant to try and clear up the Chinese whispers, but fail on this too, she was too busy to speak to me! Only twice I think since treatement began a year ago, have I requested to see her, both times, I have been unsuccessful in acheiving this!
Well I am much more calm, when we arrive in clinic for Harry's transfusion and have put behind me my frustartions and focus on forthcoming festivities! Harry and I become very productive and make about 10 Christmas cards. However, I was not prepared for Harry's full on tantrum at the end of his transfusion. Why you may ask, well he had not finished playing and actually wanted to stay the night! I am so glad Harry is the age he is and oblivious to the battles I go through on his behalf and his focus is to play and have fun. I am also glad that he likes being in hospital. He has so much attention when he is in from the play workers, nurses, mum,  dad, grandparents and others that visit, that he becomes a celebrity! At his age he can't really remember being in hospital for his high dose chemotherapy. He doesn't seem to remember how much pain he was in during his first immunotherapy treatment in October either. Perhaps partly that once out of hospital we never dwell on it with him either and focus on the next adventure that is round the corner, getting to school and him seeing his friends and riding his bike etc!
Today, which is Sunday we have enjoyed a lovely Sunday lunch with mum and dad. This is the first lunch we have had in a long time whereby the 6 of us have been together and it was lovely. The boys even played for a while, whilst my mum and dad and Paul and I actually had a conversation. Harry is actually doing really, really well. Though, his platelet score was low on Friday and at the point whereby a transfusion will be needed soon, he has energy. What gives things away is his platelet blood spot rash, which has been steadily increasing over the weekend to the extent that I think his platelet score will have plumetted to transfusion levels. We have a community nurse visiting Monday afternoon, but the scores on the doors may take till, well into Tuesday to get onto the system. Do I just take him to clinic tomorrow, wipe out the day,but get him turbo charged, so he is on full throttle the rest of the week, or wait! I think my need for control says I will probably take the job in hand and get it all sortedd tomorrow, so we know where we stand for the rest of the week, hopefully lots of school for Harry, some time at home for mummy, to attend to many a job missed over recent months!

Tuesday, 6 November 2012

6 th November a time of reflection

Well since my last blogg we have been able to get away! yay! We had hoped to go away the Sunday afternoon (28th), but Harry needed a platelet transfusion and a red blood cell transfusion as it transpired after another blood test. Daddy got Harry to hospital for 9.30 to try and get completed and off on holiday ASAP, but as always as soon as you set foot in hospital it's like you are on a different time zone! Harry arrived home about 6, we rushed tea and set off about 7, arriving at our destination in Lincolnshire for 9! The boys slept on the way, but awoke on arrival with a twinkle in their eye to run around like mad things for the next couple of hours! They remained like loonies the next couple of days and were completely giddy with being away somewhere new! Luckily for an exhausted mummy and daddy they calmed down on the Wednesday! I think the platelets and red blood turbo charged Harry! At least we did not have to visit the nearby hospital we had been linked to whilst away!
We visited the seaside, a working windmill, a castle and we even saw a Lancaster bomber taxiing down the run way and afterwards we got to have a look inside! This was courtesy of The family who own the aircraft. It is a memorial to family lost in the Second World War and is part of the East Kirby aviation museum. The family knew about Harry's journey from our friends Susan and Stephen whom we stayed with and they pray for Harry's recovery too! Harry loved seeing all the aircraft as did we all!
So the holiday was a success, and a lovely change of scenery. We thank Susan and Stephen who have Labernum B and B for their generous hospitality.
On the way home we had lunch with my cousin Richard, wife Caroline and their 2 children. Time flies and we hadn't seen them for 9 years and never met their daughter. It was great to catch up and all 4 children really got on, which is always a bonus!
One thing I haven't mentioned is that Harry can ride his bike without stabilisers! He's had a few falls and wobbles, so thankful that he'd had his platelets topped up! But he's doing really well and is very proud of himself!
Don't remember also if I have said that Harry has lost 2 front teeth and has therefore been visited by the tooth fairy twice! Though the second visit was a night late! Mummy was so engrossed in giving Harry his medicines down his NG tube that I forgot to leave the £1! Oops! Harry thought the tooth fairy was poorly and all was ok!
On Saturday we went to Jack's Journey Christmas Market in Settle, raising money for the brain tumour society. We met Jack and his brother James, when Harry had his radiotherapy in the summer. Jack is awaiting scans at the end of November to see how his tumour responded to the radiotherapy, he was clear for 18 months, but relapsed, thus having radiotherapy to try and blast that tumour away again. The Christmas market was brilliant, the boys won loads of things on the tombola! Jen, Jack's mum and her team really pulled the stops out, they raised over £4000!

So, Sunday brings us to Callum's birthday party! We had it at the social club at High Royds in Menston where there is a big room, heather did us proud with providing food and Becky Lister had made an amazing fire engine cake! Callum had a great time, thanks to all that came and had some fab presents too!
We topped Sunday off with going to a firework display at Stockeld park near Wetherby, the first big display we have been too with the boys. Apart from Callum complaining of the bangs a bit towards the end, both boys really enjoyed it! So a successful fun packed day, which was great as Harry went back into hospital on the 5th! Yes Callum's birthday. We gave Callum his presents in the morning, which was playmobil fire engines and accessories, a massive hit!
So, with daddy working, Callum goes to granny and grandad's for the day and I take Harry to hospital for his second course of antibodies for his immunotherapy treatment. Again, as soon as you enter the ward its hospital time again and despite arriving at 11.30 am, Harry didn't start the 8 hour antibody infusion till 6.30 pm, which meant every 30 mins till 2.30 am Harry was disturbed as he needed observations being done to ensure there were no undue reactions to the immunotherapy. As you can imagine Harry didn't like being disturbed, well who does! He kicked off around midnight and was really fighting the nurse! He calmed down though and his Obs were done! What I find irritating is when the nurses don't get why Harry would be irritated, when awoken from a deep sleep and then prodded about! tonight the antibody has been started 1 hour earlier, so it'll finish at 1.30. So far Harry is fairing well and just has stiffness in his joints and a little water retention! However, how they react to the treatment can vary from course to course, but for now we are pleased! We are even more pleased that following seeing Harry's consultant she agreed that Harry is doing above average at this stage of his treatment!
To say only 2 months ago Harry was so very frail and poorly we can only thank all these people who pray and think of Harry as his turn around has been amazing!
We approach the anniversary of Harry being diagnosed, which was November 12 th and with that we begin to reflect on the last year! I could not envisage being in this situation a year on, but here we are!
Ward 31 has become a familiar place that is like a second home. Harry settles quickly into being at hospital and is familiar with many of the staff. We have seen some fantastic nurses leave over the year, particularly Kate Barnfield who has gone to Australia to work in oncology there for a while. Play workers have been on maternity and come back! Last November we were told Harry's treatment would last around a year, so I thought we would be done and dusted before Christmas! However, Harry needed extra chemotherapy in February thus year, which caused about an 8 week delay with treatment and extra tests! Then we delayed radiotherapy a week to go on a much needed break away to Filey, then we never envisaged the complications Harry had following radiotherapy on August/September causing another couple of weeks of delays! A year was probably the quickest the treatment could be completed, but its nearer 17 months!
I've been adding up the number of days Harry has had to stay overnight in hospital and it is approximately 135 nights! On top of that he has spent numerous days as an outpatient, it is easily 60 days as an outpatient, but that doesn't include all the days for transfusions and trips to have his NG tube refitted! So for many of the remaining 166 days left of the year, Harry was only really well and on top form for a few of them. Probably in total Harry has been really, really well for about 12 weeks or 72 days at various points this year!
We have been on a roller coaster of emotions that can never be underestimated. We have signed numerous forms this year, consenting to Harry having very invasive treatment. He had had numerous anaesthetics, whether for a simple bone marrow aspirate to having his tumour removed in a major 8 hour operation in April.
We have met children that have died this year, we have met many newly diagnosed children with various cancers. We have in short entered a world we new existed, but had never given much thought to. Yes we know many people who have had adult cancers, but not childhood cancer! The ward have children from about a 90 mile radius, so covers a vast area, hence seeing so many different faces on the ward!
Without the treatment Harry would have died last year, that we are sure of. To have him here now, we cherish dearly. We know of 4 children who have died from Neuroblastoma this year and 2 that have relapsed! This is sobering information! We know the treatment has been horrific and questioned at times if we had done the right thing consenting to it, however we have hope now for a long future for Harry. We will certainly be enjoying having a much more healthy Harry this Christmas and intend to have some fun festive fun!
We thank everybody who has supported us over the last 12 months . We thank God that Harry is still here and we ate still standing too. Paul and I are are not rocking backwards and forwards in a chair quite ready to be sectioned! However, the turbulent year does put you at an emotional and physical disadvantage at times. There have been days when I feel I can't plough on, but you accept these days, shed done tears and pull yourself together again. I also admit that our marriage at times has been under considerable strain. When you just have time to meet on a ward or a rare lunch in between caring for your very sick child, well I think it's enough to challenge the most stable if relationships. I do remember writing in Nov last year that I wondered how we we all fare, including Callum with the months of Harry's treatment ahead. I feel we have done our best, none of us will ever be quite the same, for we are all a year older, definately much wiser, much richer in life experience, but most of all still a family!