Monday, 31 December 2012

Goodbye 2012 and hello 2013

Well it's the end of another year, but for us it's not any old year, but one where we have seen Harry endure horrific treatment, not once, but many times.

We commenced the year with Harry on COJEC chemo, upon retests in Feburary however, we found out that his bone marrow still had cancer cells in it and so we could not progress through Harry's treatment path way as expected. We had to take a diversion, which meant Harry had 2 rounds of TVD chemo, before further retests could see if it had done its job. This was a hard time for us as we were told that because Harry needed extra chemo his chances of ultimate survival would be reduced. We were also told he would only be able to have a maximum of 4 rounds of TVD, but if that failed he would be classified as palliative care only, ie end of life care! To hear these facts was hard to endure and crushed us for a while. Fortunately Harry was clear after 2 rounds and the relief was immense to know we could progress back onto the high risk Neuroblastoma protocol. We did manage a holiday in Scotland prior to getting the results in march and the sun well and truly shone on us as we had beach weather! A big boost for us and we had fun with friends whom we stayed with.
So as said we moved back onto the protocol pathway, which meant being in LGI on Easter Day for Harry to have chemo to stimulate his stem cells in preparation for his stem cell harvest, which happened around 15 th April. 3 nail biting days as we held our breath to see if Harry would produce enough stem cells needed for his stem cell rescue in May! It was touch and go, but yes he produced enough! Another deep sigh of relief!
We then moved onto Harry's operation to remove his tumour on 25 th April. An 8 hour operation which removed 100% of his tumour plus his adrenal gland, but at least left his kidneys in tact and left no further long term damage to his bowels either! Going through this stage was also immensely stressful for all. Harry coped amazingly and the morning after his op was playing with lego, despite being puffed up with excess fluid and being on an epidural for pain relief. It took a day or so for him to smile again, but he quickly bounced back. With the knowledge that high dose chemo was on the horizon and with that a long period of isolation in LGI, we tried hard to have some fab days out, full of fun to create happy memories to be relived when going through high dose chemo and his stem cell rescue.
On May 16 th we commence a 6 week stay on the bone marrow unit in LGI. Harry has high dose chemo for a week, to strip his body of any remaining cancer cells. With this his hair that was beginning to grow again falls out, the least of our worries though! Harry is initially too boisterous for isolation for the first week, then reality kicked in and Harry bottomed out! He was lifeless, exceedingly poorly and a shadow of his former self for about a week. He begins to perk up and we go Yay! But then VOD hits, a liver disease, which is a side effect of chemo! Harry has to reduce his fluid intake to only a few millimetres to try and help his liver recover! He returns to the lifeless chap we had witnessed only a few days earlier! Another set back! You think you can't deal with anymore, but you have no choice. The time sat in Harry's room, where all he wanted was for me to just hold his hand was one of the worst times of my life. Being alone the thoughts just go round and round in your head, with little distractions, only the nurses to talk to most of the time, particularly as Harry was at such high risk of catching an infection, visitors were kept to a minimum. Since his immunity was so low it was inevitable that he did get an infection despite every effort to protect him. As we learnt during TVD chemo, when his neutrophils are nil his own bacteria can be harmfull to him let alone anyone else's!
But we get through high dose chemo and the stem cell rescue and revel in being out of LGI! It's hard being at home at first though as Harry was so fragile and attached to us, having not been on his own for 6 weeks! Callum is also affected by disjointed family life and is playing up for our attention too! We muddle through it all and at least had The Summer Charity Ball to put the finishing touches to, to keep us smiling!
The ball was a real success and prob the best night out of the year! We all scrubbed up well and raised nearly £4000 to be shared between Candlelighters and CLIC Sargent! Many thanks to El, Jenny, Steph, Ayshea and Claire for helping make it the success it was. Organising the ball gave me focus through the many difficult times we had already encountered on Harry's cancer journey.
Following the ball we managed to get away to Filey in a caravan that Candlelighters have. Harry was still lethargic, but we had a really good week and even utilised Scarborough hospital for a platelet transfusion!
Harry throughout July gets better and better, which is fabulous to witness!
At the end of July Harry has retests to ensure he is clear of cancer. These had been forgotten about, so were hastily planned prior to radiotherapy! We commence radiotherapy without the results on 30 th July! A week later I am asked to go immediately to clinic for a meeting with our consultant following radiotherapy. With my heart beating so fast and my breath held I am unsure what to expect, but to my relief the retests prove that Harry is in the clear! Another Yippee! Radiotherapy continues, 14 rounds needed, Harry was really well to commence with, but gets incredibly sick Half way through. We try several different anti sickness medications and concoctions, but to no relief. Harry is admitted to the oncology ward, but discharged with a slightly new change in medications. We have 24 hours of reprieve before the vomiting and diarrhoea recommences!. Harry continues to lose vital weight and we have another stay in LGI a week later. I am so worried as Harry is skeletal, but we are discharged home to try feeds almost 24 hours a day at a slow rate to try and get some nutrition into Harry! We can't manage it. Harry's NG tube had already been vomited out half a dozen times in the last 9 days, meaning more trips to LGI, with even more vomiting this increased the amount of new NG tubes needed and visits to hospital! At that time we truly could see Harry literally slipping through our fingers as his weight plummeted to dangerously low levels, he was exhausted with the treatment, the vomiting,the diarrhoea and lack of nutritional intake. Mummy and daddy were at their wits end, it was an immensely bad time being at home and we felt abandoned by services!
It was upon a review trip back to radiotherapy that we felt the needed action was going to be taken as they were appalled how thin and unwell Harry was!
We were admitted again to LGI oncology ward and stayed there for the next 2 1/2 weeks. Harry is put on an intravenous feed ( TPN) to try and put some meat back on his skeletal frame. His severe diarrhoea we find out from further tests is due to a bacteria present in his bowel and just took time to go. Harry was so weak and malnourished he got an infection. From cultures taken from his line, it was evident that the infection was due to actual bacteria being resident in the line. Harry had antibiotics for nearly 2 weeks and temperatures of over 40 degrees centigrade, however, he vastly improved for his birthday, 12 th September where he reaches the grand age of 5! He missed the start of school, our aim being at that point just to get Harry being well again! Harry had his birthday in hospital attached to about 5 machines, but was smiling, happy and had fun! A lovely, lovely day!
Harry soon returned home, having had his port removed as it was knackered and infections would just keep repeating themselves! Harry had a new one put in under a 2 hour operation at the end of September, which is now on the other side!
Harry managed to start school for a couple of hours a day, but he started all the same. Another big Yippee! A milestone we thought may not have happened only 4 weeks previously!
Harry was also well enough to commence the final leg of treatment! He commenced his rhetonoic acid tablets at home then endured his first antibody (immunotherapy) treatment on
8 th October. Again, more horrific treatment. Harry reacted badly to his first round of this treatment. He had bad arthritic type pain, water retention, diarrhoea again and a temperature. It was hard to witness Harry's agony. The morphine often did not hit the spot!
Fortunately subsequent courses of this treatment have not been quite so severe. In fact Harry's progress has been truly remarkable and he and Callum were able to be the bouncing, giddy kippers that any other child is on the approach to Christmas! Harry has immense energy at the moment!
He has commenced the penultimate course of antibodies as I write this.
Wow, what a truly immense year!
We have cried bucket loads, had the deepest, darkest thoughts, felt that gut wrenching knawing feeling that you get in the pits of your stomach when utter despair and sorrow is present, but due to those feelings felt the biggest wave of love for Harry as he is nurtured by us back to life, back to cheeky, witty Harry. To see Harry and Callum play so well, laugh together, fight each other then laugh again truly presents the happiest feelings within us. Our Christmas present is seeing our boys able and well enough to have fun.
Callum must not be forgotten either and has grown up so much over this last year!
Harry's bloods are finally recovering post stem cell rescue and he has managed 3 weeks without the need for a red blood or platelet transfusion. He has not managed this length of time between transfusions for months!

So we say goodbye to 2012, a roller coaster of a ride that has taken us to depths unimaginable, but with that we have appreciated the good times and have managed to enjoy the short periods of heights in between treatments!
2013 sees the end of treatment in sight (february) and the beginning of piecing us all back together to go forth and rejoin society ! Sometimes when i'm down i tell myself to pull myself together, everyone has 'stuff' happen and to deal with. However, we have been through an immense amount this year, our journey has been truly emotional and i think we are currently living on reserves!

Relapse is a realistic fear we have. Having found out another boy, Oliver Field has relapsed only 4 months post treatment, we are mindful of our precarious position! However, we intend to have some fun in the coming year, that you can be sure of!

I toasted the new year in with 3 nurses, a doctor and one other parent! It seemed striking that the other parent was only just beginning their cancer journey with their little girl having been diagnosed with stage 4 Neuroblastoma only 6 weeks ago, while our journey is approaching the end of treatment. 2 contrasting years ahead!

So live, laugh, love!

Health and happiness to all for 2013!






Saturday, 29 December 2012

Sat 29 th dec

Well a while since my last blog! We have been busy, busy, busy! Paul was on his driving course, which he passed! A massive Yipppee! It was not easy for either if us. Paul had weather of all kinds to contend with, I had to deal mon - fri with the kids alone, since Paul stayed with his parents in the week as a much closer proximity to the course location. The boys were so hyped up with Christmas that this was a time when all my inner calm was needed to not explode at times! Though in all honesty at times the inner calm was just not enough to not explode at 2 giddy kippers intent on running riot at times!
I will write more over the next few days as I go into LGI again with Harry on yes, New Year's Eve for round 4 of immunotherapy!
Harry is amazingly well at the moment and has been able to enjoy all the festivities of Christmas! He was bursting with excitement! A joy to see!
He has had his first haircut since sept 2011, a huge milestone. He was also Joseph in the church nativity! A beautiful service involving all the children, well those that wanted to participate, of which Callum didn't! The service ended with the children waving flags on stage at the front of the church and no they didn't sword fight with them either!
I'll post you some photos taken over the last couple if weeks!

Thursday, 6 December 2012

Pictures 6.12.12

Thursday dec 6th

Well Harry had a very busy weekend pre his 3rd immunotherapy treatment plan. I wasn't sure how Harry would cope, since Friday he was very tired, full if tantrums and a day to write off. I gave Harry a very good talking to about not crying at everything and after a great sleep Harry awoke in a fantastic mood thankfully!

We went to Harry's school fair, which had loads going on. The tombola is always a big hit, where both boys won a number of prizes! There was a toy stall on which I had donated a few of the boys toys, unwittingly though Granny and Grandad bought back the fire engine and ambulance. It's the second time I have tried to get rid of them! They are friction ones, which our boys ram across the floor actually creating a noise like thunder and louder than any battery operated toy we have! So we have them back, they were a set of 4, so someone has the other! Most children would just play nicely with them, so the noise will be more limited, but not mine. As soon as we got home, the boys were on their hands and knees ramming these toys along our wooden floor! Aaaaahhh!

So we go on to visit our Sarah, Richard and Olivia in their beautiful new house, which is up the road from Paul's parents house!

Paul's mum has had a cold and cough for the last month, so now clear we visit them too and stay the night. Paul and I manage to get a night out too, with Sarah and Richard and Paul's brother, not happened in a long time and really good to catch up over drinks and not over the noise of the children! In fact the only noise was from some really good tunes from the pub sound system. Great 80s music - love it!

Then on Sunday we move onto the Candlelighters Christmas party. Our first party! Defo more than 100 kids there! The boys loved seeing Fireman Sam and Peppa. Callum was do made up to sit on Peppa's knee, whilst waiting for his present from Santa! With do many kids it was a while!
We also met up with a family who were on the ward when Harry was diagnosed in nov 2011. Alex finished his treatment some time ago, but with Harry fairing very well too now, it was good too see what just over a year brings - kids just having fun!

So with the kids exhausted, bed time could not come soon enough! Then I packed for all of us for the week, well Paul did his own! But as Harry was to be in LGI mon - sat and me with him for the duration we needed clothes , as I wouldn't get the chance to come home, Callum was staying at my parents, so he needed packing up too. I also needed to take food with me, so like going on a weeks holiday almost, without the fun if it to look forward to. Paul has been on the second week of his driving course and since the weather forecast had been dodgy, he's stayed at his parents, which is closer and can share car journeys with a colleague.

So, Harry has had 3 out if his 5 rounds of immunotherapy thus time and fared well. He did have a lot of pain at the beginning of tonight's treatment and had to press the button for extra morphine to be pumped into him to combat the pain, but fingers crossed we will be out if here on schedule for Saturday.

Harry has a cold again, so we are isolated! We were in 3 different beds Monday. First of all in a bay with others, until they decided on balance with Harry's runny nose he should be isolated, so we are moved to bay one, where we have this large room to ourselves. The room manages to get Wi-fi from the teenage ward, so I am rubbing my hands thinking of the space and being able to watch strictly on the iPad! However, a shuffle round of beds, meant we couldn't stay and so needed to move to bed 12, a small side room and no wi fi! However, being smaller, we have got into the festive spirit with my purchases from crafty crocodile online catalogue and hobby craft and have adorned the walks with glittery pictures. Janie brought in some paper chains and made a grand effort which stretches across the room and one which Harry is extremely proud of!

So with Paul on his course all week I have to thank the support of people coming and giving me a break! My parents, Janie, Briony our worker from the sitting service and Jo our ClIC Sargent volunteer. It was also great to meet Becca up for tea and Steph was able to have her lunch hour so we could grab a coffee together!

Without these breaks from caring for Harry in such an environment, where home comforts are few and where Harry hates me leaving him to even make a drink in the kitchen, well I'd go a little mad!

What is helping is our light getting bigger as we near the end of the tunnel! Only 2 more immunotherapy sessions and 3 more cycles of his rhetonoic acid tablets. Then retests! I keep talking about the end of treatment and am very aware that come mid February it doesn't all just stop and normality commence. Harry has to increase his stength and stamina. His body needs to recover from being targeted with so much vicious treatment. His bloods need to recover and manage with less transfusions. All this will take months and so I am trying not to get to the end and think that's it, as if I do then I think the post treatment blues could kick in whereby I get frustrated with not immediately returning to prior diagnosis routines and work.

When I do return to work I need to know I can give a good run at it and Harry's hospital appointments are minimal, as if I can't, with the likelihood of more budget cuts, redundancies will be on the horizon. If I can't physically manage to be at work as required then I will lose my job under capabilities. So it's tough!

However, back to the things I can control and that was seeing Callum today. My parents brought him in. Harry and Callum played do nicely together too. I also took Callum out to the museum in Millenium Sq, there is a exhibition around evolution with quite a few stuffed animals, of which Callum had little interest in and was scared of a couple! He enjoyed McDonals though and then seeing the Christmas lights and decorations in the Merrion Centre and then through the German Market back to LGI. I'll post some pictures from today in a separate blogg!

Having hit the post year mark of being in such close contact with LGI we feel a bit like veterans now! I have met more families of newly diagnosed children, shown them where the cups and coffee is kept and also talked to a family of a little girl, who was diagnosed with Neuroblastoma stage 4, the same as Harry. They were in fact in the bed opposite, when we first arrived on this admission, so for them seeing Harry so far on in treatment and well, gave them a boost of positivity! I also met another mum, whose son has Neuroblastoma and is nearly at the end of the initial 80 days of chemotherapy. She was also pleased to hear that Harry is nearly through his treatment and this gave her hope too. As said in previous blogs there have been a few deaths and relapses recently, which people are aware of and this makes the path a harder one to traverse across at times!


So with Christmas nearly upon us, fun is on the cards for the next 3 weeks out if hospital. Harry's platelets lasted 2 whole weeks before he needed a transfusion! This is massive for us, this ultimately means Harry's blood is beginning to recover, which also = less time in LGI. Whoop, Whoop!

So we pray for discharge on Saturday and minimal contact with LGI until our return on New Years Eve for round 4 of immunotherapy!





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

18.11.12

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!

Friday, 26 October 2012

26th October

Well this week has been a totally different week to last week, thank goodness. Life settles down and Harry goes from strength to strength. Last Friday he had platelets in the evening, he was borderline needing them, but glad he did as he was tumbling all over, when we visited Catherine, Paul, Daniel and baby Thomas on the Saturday. Harry was trying to negotiate Daniel's scooter, but kept falling over. Thankful he'd had a platelets transfusion, so he would at least clot if he grazed himself! Also I think he would have ended up black and blue with bruises from all the leaping around Callum, Daniel and Harry did, lovely to see!
So on Sunday my parents had the boys, so Paul and I could have a very adult trip to York. A trip we had planned last November, but due to Harry's cancer, alas not  taken till now. We have had the odd meal out whilst Harry has been at LGI, but it was so good to go out and know that Harry was in good spirits and able to have a great day out with his brother and Granny and Grandad. They went to Temple Newsom for the afternoon and as my mum said it was like old times, but each boy a year older! Paul and I really did enjoy our day out and much needed time together. The sun shone and we were able to bask in the sun by the river enjoying tapas and a cheeky glass of wine!
So as the week has progressed Harry has been in school 10.45am till 3.15pm mon - thurs. Today has been a training day, so Harry styed at home. He enjoys school, though he says they don't play like at nursery! He was also a bit dubious about going 4 days in a row! Wait till it is 5 and full days!
Harry is still on his rhetonic Acid tablets, they finish on Sunday and these give him some joint pain and dry skin. But nothing compared to immunotherapy. He still awakens on a night, though at least getting better. Wednesday night he awoke alot around Midnight and he complained of pain in his throat. I feared he was brewing something. He is still on the borderline of being neutropenic, so very susceptible to picking up something and having a temperatre, which then means a 5 day hospital stay at least. However, after a dose of pain relief, Harry slept the rest of the night and woke up on good form! I very much breathed a sigh of relief.
This week we have tasted normality and we love it, we can chill out a bit and take deep relalxing breaths. Though, having had Harry's bloods tested today, his platelets are borderline needing a transfusion, so before we go away on Sunday, he is having a platelet transfusion. His HB was borderline too, 8.5, he gets a transfusion at 8. His bloods will probably be retested on Sunday. It will probably be a good thing if he did have a red blood (HB) transfusion so he is topped up for our short trip away to Lincolnshire. He should then be on top form. If he his red blood (HB) is dropping then this can make Harry feel tired and cranky. We are sooooo looking forward to a few days away with Susan and Stephen, who have a B and B, that I truly hope Harry is on top form. He still talks about his day at  Silverstone and if we can have a great week, prior to his next hospital admission on Nov 5th, yes Callum's birthday, then good times will see us all through another horrific week.
So, we realise that normality is sweet and had forgotten what routine was like! However, as said, we are also aware that Harry can dip at any point and end up back in hospital. We just pray for a lovely family break away, we really need it.
Just to add though, that we also really value our time with Harry. Having heard that a little boy Jaiden has just died from nueroblastoma cancer, having never escaped hospital after high dose chemotherapy due to complications, we know Harry is doing remarkable well. I met Jaiden's mum a couple of times, the last just after he had commenced high dose chemo and he had, had his stem cell transplant. We were in the room next door to them. Our thoughts and prayers go out to Jaiden's family as this horrific disease causes so much pain, not only to the children who endure the cancer and treatment, but to all those around them who are deeply affected and have to deal with the loss.

Wednesday, 17 October 2012

17.10.12 reflection

Harry was discharged home Sunday. He was disconnected from all machines in the morning and once he had woken up and come round, he was racing round his room like a loony tune! We were awaiting the doctor to review Harry as only the night before, the discharge date was going to be Monday. Since Harry presented so well he was allowed to go home in the afternoon. This was great news. My parents had visited with Callum, as I wasn't sure when discharge would be. Callum had a great time racing around the ward and proposition a bemused doctor with a petrol pump, which he decided was a joker soaker. With relief i packed Harry's room up, including all the decorations he had made and we get home around 4, just as CAllum comes home from creepy crawley party, one where there are insects, spiders, reptiles and rabbits to touch. He had a fabulous time. Both boys giddy, i unpack, which is always very time conuming, whilst my parents stay and entertain the boys. Paul is working and has managed to complete all his shifts, whilst Harry has been in hospital, which has meant I have done all the time in hospital this episode.
Hopsital was hard, dealing with all the side effects Harry had from the drugs. The pain was hard for Harry to endure at times, as it was for me to watch. However, with a hospital team around us, our private room as well, hospital in many ways wasn't so bad and i just try and get on with it and focus on Harry.
However, being at home is soooooo much harder. The fantasy is, that it is all roses, happiness and fun. The reality is that as Paul carries on with the rest of his set of 7 shifts, I'm the main one dealing with the aftermath of a hospital stay. This leaves Harry in the centre of attention mode, very demanding, it leaves Callum demanding for my attention as he has hardly seen me too. I want to scream get me out of here and there is a competition as to who can have the loudest tantrum, me included, not very good parenting I know, but perhaps come Monday, the week of sleepless nights, the worry and stress of managing Harry's side effects, the fact that Harry never started on a particular pain killer prior to his treatment called gabapentin, that he should have done, angers me, as i begin to reflect on the past week of events. Harry was so well prior to this admission, he was rocking on life! As said, Sunday he was running around like a loony, but i think he exhausted himself. He is also having a come down from morphine, which can give you mood swings. He is fatigued from the treatment, still having slight intermittant pain in his joints. He cries at the drop of a hat when things don't go right for him, its exhausting. On Monday I was thankful we had a nurse coming for a couple of hours in the afternoon to look after Harry. He was so exhausted come Monday lunchtime, so tearful, screaming about everything, but I managed to get him to go back to bed and he fell asleep. This enabled me to take Callum out to the park, whilst the nurse sat with Harry. This was lovely to have time just with Callum. Harry was in a better mood when I arrived back fortunately. At 6.15pm, the boys were actually playing nicely together, but bedtime alas! However, tears returned for Harry as bathtime ended and Harry was clearly exhausted again.
We never saw Harry's consultant last week, not sure if she was off, so I never got the chance to pursue the fact Harry was missed on getting the gabapentin, prior to treatment. I discussed it with another doctor, junior to our consultant and he thought that Harry should have been on it a week prior to the commencement of the immunotherapy. The charge nurses I felt was trying to cover up and said well sometimes they are started on it and sometimes they are not. I think again Harry has just been forgotten, like when the retests were rushed through prior to radiotherapy. I am now following up this fundamental flaw. We will never know how much the drug would have limited Harry's pain, he didn't start it until the Wednesday and then doses are built up, so the effects of this drug not really felt this time, but he is renaining on it until March, so it can't be forgotten! I think on reflection I feel angry that Harry probably went through greater pain than need be. This upsets me too. I think in general this week my emotions are all over the place. Possible also due to the fact I now realise that this immunotherapy can never be given as a day patient, as the ammount of infusions through Harry's port are too great, plus the morphine infusion too. The treatment can only be managed through a hospital stay. I had been told that perhaps, Harry could have the treatemennt as an outpatient later on, if the side effects were more minimal. I think the information I was being told was for the drug that Harry was put in for, but the computer said no, that would have been an injection and that could have been administered as a day patient after the first couple of sets of treatment. Maybe I got the info mixed up? Anyway, the implications are that every 4 th week, till March Harry will be hospitalised. This therefore has a real impact on my ideal to return to work. Couple this, with the fact I am only getting Harry into school for a few hours a day, I have no childcare anyhow to be able to work. Harry should be well enough to go to school much of next week and I have pushed for the school to be signed off giving Harry his medicines tomorrow, yay, but no yay on the other hand. I will explain. Prior to this hospital stay Harry was on 1 medication at lunch time, so the school knew this, but as always with a hospital stay Harry has come home with more medicine to take! His magnesium levels are low, so he is back on this 3 times a day, then there is the gabapentin, this is 3 x day too and it needs to be kept in a fridge. Well on discussion with the community nurse, she says the school will only administer 1. Well I blow my top,  what difference does it make giving all 3!!!!!!! After much discussion, I conclude that the magnesium could be given after school, as long as the 3 doses are got in, it does not matter so much on the spacing out of this. The gabapentin, needs to be evenly spaced though, but the nurse is adamant on the softly, softly approach, where i am always a lets go straight in there kind of person! Anyway, since Harry is unlikley next week to start school till 10.15 am, I agree to give the gabapentine after school too, however, this is because there is only next week then its half term, then Harry is in hospital for a week, so by the time he returns mid November, I then want the nurses to push Harry having the gabapentine, as I am hoping he may start school sometimes at 9! The medication the school will give is needed 4 x day, so definately needs to be given at lunch time. The nurses did query this one, but when I asked how do I fit 4 x day in, if lunch time is missed, there was no answer! So nothing is easy as always.
The other thing is that Harry doesn't want to go to school now, as he has missed it for a period and going in again, means resettling. I am sure he'll like it when he gets there!
So this week I feel an emotional wreck, tearful at times, as i come to terms with being unlikley to realisticly get back to work until March next year, though I am still thinking of other child care avenues. I feel I have lost my identity, lost my self esteem, lost myself really. Maybe the past year is taking its toll as we keep trying to plough on. And it is a year. 10.10.11 is the day Harry's leg pain kicked in, I dismissed it as cramp! The sleepless nights set in with avengence then and we have not had many nights in the past year that we have not had an undisturbed night. If Harry actually sleeps well, then you can bet his feed machine beeps for some reason.  Like last night, Paul was working nights,  I want an early night, but sadly disturbed at 11.45pm by a beeping feed machine. It took me 30 minutes to sort out, having tried all the usual techniques, I had finally put a new feeding tube on, which sorted it. However, though exhausted I had an array of strange dreams, so woke up none the less benefitted sadly and my temper and tolerence is much shortened! Though again this afternoon, I had a nurse provide a couple of hours respite and I met a freind for coffee, Callum was in nursery. This was lovely, but the house is in a tip and paperwork, which only Paul and I can deal with is gradually becoming probably the best centre for a bonfire, we just need a Guy!
I think extreme fatigue is to blame, but again loss of my fantasy of working and creating some normality for another few months. In my heart i guess I know work is unlikley, but I find it hard to be a stay at home mum and need distraction. I know emotionally I am not at a point currently of being fit for work. I  keep thinking it will get easier, but each treatment has its own set of rules and we have to try and adapt to them and the way they knock Harry each time.  I do also find myself wandering what life will hold for us at the end of this. It could be likley that Harry still needs regular transfusions of red blood or platelets for months following the so called end. Plus the regular 3 monthy retests. I guess as the end nears and thoughts progress to life beyond the hospital and that one should return to work and life resumes, then that also scares me. Although I want to resume to 'normaility' I am not the same person I was, you can't be. As much as I don't want to dwell on Harry's cancer journey for the rest of our lives, nor do I want people to be dismissive of the journey that rocked our boat and turned our world upside down. I find that hard now,  for example I said to someone that I never thought Harry would start school and the response was, well he has and he is here now,end of!  As much as there is a time and place for dwelling on the past, I find this hard, as to gloss over the last year, as if the journey has not happened, to me is to deny the fight Harry and ourselves have gone through and made Harry the boy he is today.
We have started back on Harry's retinoic aid, which is in tablet form and has to be taken morning and eveing for 14 days. I don't think I have gone into the administration of this before, but apologise if I have. Harry had 3 tablets to take initially each twice a day, but as he has thankfully gained weight, he now has 4 tablets to take morning and evening. Since swallowing these tablets about the size of an olive oil capsule is not an option, the original plan was as told by the pharmacist, was to cut the top off the tablet, squeeze the contents out into yoghurt, stir and voila, Harry swallows the mixture. However, the first administration of this back in September was up there in comedy classics! I had rubber gloves on, which is a must to protect my skin, the centre which is jelly and not oil is very hard to extract, getting a skewer I try and scrape the contents out, but most ends up on my glove and the slippery tablet the other side of the room! There I am worrying that if I can't get the content out, then Harrys cancer will just come back, I am also worrying how long the contects is exposed to light, as this slowly weakens the effectiveness of the drug! I therefore abandon the job after the first tablet and yes, despite being told children won't swallow these tablets, I say to Harry he has to swallow it!!!! So i put the tablet in his mouth, with yoghurt and tell him to drink is juice! He won't swallow it and he is in tears, I am as said worried about the whole affair and his cancer returning. However, we have a break through, Harry cracks the tablet with his teeth, gets the content out with his tonge, I spoon yoghurt into his mouth, he then spits the shell out, Voila! Job done and he repeats that step with each tablet, cracking them with his teeth and spitting the empty shell out. Harry is such a good lad at times, it save me having one nervous breakdown anyhow!!!! It also means Harry is getting the entire content of the drug and I feel more relaxed, that we are doing everythinng to prevent his cancer returning!
On reflecting the past week of events, I also reflect on the many doctors we come across. I could write a dissertation on the rightful treatment of patients and that they are people and not just a figure to be treated! Doctors need a new module in their training, how to be empathetic, respectful and person centered! We do have the lovely Kevin, who is a top oncology doctor, who I hope makes a consultant one day. He has all the right qualities. He talks to Harry, includes him in the consultation, asks him where the pain is, he also remembers and knows Harry's history! The junior doctors who have just started in August have soooooo much to learn. I have probably said this before too, but I question whether some have been dragged off the street, as their knowledge appears to be minimal. The doctor who saw Harry at the weekend, to be fair was not an oncology doctor, but more the need to read Harry's notes before entering. She didn't know what medicines Harry was on, she didn't know that we had the resuts of his cultures, saying that there was no infection present, in fact she denied the cultures could possible be assessed, thinking his first temperature was the night before not Tuesday night! She had no idea really about the plan for Harry, the protocol as to when his hydration infusion should end, she also had a poor ability to engage with Harry. Admittedly he was grumpy at the time! Then there is the docor who is summoned to reassess Harry medically in the middle of the night. I am  awoken to take part in this of course! Half asleep I hold Harry's hand whilst he cries in disagreement at being prodded at 1.30 am as his oxygen levels are lower than they should be. Oxygen is wafted in front of his face to bring his sats up. My eyelids keep drooping to close and the doctor asks me if I have any questions, my only one is, can I go back to bed! There are too many instances to jot down here of doctors coming at meal times for example and wanting to poke Harry, they say they can't come back and Harry just ends up upset, the last time this happened I put my foot down and the doctor had to wait the 5 minutes until Harry had finished lunch, then he was very ammeniable and the job was probably finished in the same amount of time, to had she purseued her first attempt, a screaming Harry would have taken longer and harder to assess! I often think about people in hospital alone, without anyone to advocate for them, often poeple with dementia or a learning disability or too unwell to speak up. I often think of the patient labelled as aggressive, if they would be so, if more empathy, understanding and timely assessmennts by doctors were made. Inteventions are invasive and often approached very matter of factly and obviously necessary, but the way they are expedited effects the patience whole experience. I know it can't always be exactly how it should be, but if most of the time it was, that would be a great leap forward!!!!!!
So as I witter on and on, I feel better for writing this all down. I started writing this with tears rolling down my cheeks and finish having I think counselled myself to some degree, well until tomorrow and the kids awake screaming at me. Again that pile of paper work is still there, but I think it is vino and relax time now! Sometimes i think of post traumatic stress disorder and to some degree, I think that I diagnose myself as having that. Each treatment is like a trauma and as life evens out afterwards, it enables  me time to reflect, I get angry at the suffering Harry has to endure, get cross with the systems I have to deal with, I try and re evaluate where life is for us and deal with the loss of my fantasy of 'normaility', working etc, anything but being a stay at home mum. I think, if life was even, then actually being a stay at home mum, does actually have its advantages and I could like it, but if life was even, Harry would be in school mon to fri, I would have time just with Callum, he would be approaching getting his  15 hours a week free nursery place come January and I would have a few hours to be entirely me. But life isn't an even playing field and so currently being a stay at home mum is none of the above and managing my boys through this whole process and I include my husband in that, well it can be the most challenging of jobs I have ever had!

Friday, 12 October 2012

Oct 12th immunotherapy day 5!

Well, Harry has completed his 5 immunotherapy infusions for this set! One step closer to our freedom from LGI! Harry has been fantastic as always. He just accepts the need to stay in hospital for a few days. Yes, today he has been a bit more demanding and needs reminding of his manners at times, oh and he is becoming fantastic at delegating tasks, a good and bad skill! Good if you are a team player and you are clearly just doing other tasks, but bad if delegating all tasks whilst you put your feet up, or is that just clever? Perhaps, but in the long run the latter type of delegator will be resented! Anyhow, Harry is a team player, he's always doing a task, whilst delegating other tasks out, he's usually doing the creative task such as drawing though, whilst his helper has the task of cutting out! Today, Harry wanted paper chains made in abundance for a party for his cuddly toy dog, Becky! He's got the play workers in the spirit by asking for party bags, goodies to go in them, balloons and cake! Voila, we are now suitably decorated and ready for a party, perhaps a post immunotherapy party!

Harry deserves it as again he has been through the mill. He's faired reasonable apparently! One kid ended up in intensive care last year on this treatment! How Harry has reacted this time should give us a fare idea how he will react to future courses. The first one so they say is the worst, so fingers crossed. Though other side effects can creep in by the third session, such as poor eyesight, though these effects should be temporary. Harry remains on morphine tonight as he has had to have several presses of his morphine to give him a boost to counteract the pain. It suddenly comes on and is severe arthritic type pain, he has pain in his joints, as well as high temperatures, flu like symptoms, water retention, he put on 2 kilos in under 24 hours and not forgetting diahrroea. These side effects wear off a lot in the morning, then build up again come the afternoon with the next immunotherapy infusion!

The immunotherapy infusion is transfusing antibodies into Harry. These antibodies are foreign cells. Harry's existing cells do not like these, so his body is fighting them and putting up a resistance. So why does he need these foreign cells? Well they attract and eat any cancerous cells still left, or dare rear their ugly head. The antibodies then neatly dispose of the cancerous cells, hopefully meaning none are able to attach to each other ever again and form another tumour!

So we pray very hard, that this leg of the journey proves worthwhile!

So once out of here, not sure of discharge day yet, but we will have to have fun, so Harry has lots of good things to remember before Nov 5 th, not only Callum's birthday, but Harry's next date with his immunotherapy.
So this week at points has been a tale of 2 lives! On Wednesday, Ian Harding had arranged another gig at Tiger Tiger in Leeds to raise money for the oncology ward. So some toys can be bought. Harry has his eye on More playmobil as the ward has a limited amount and some of that is broken! Anyhow, as always I create a military operation to get us there! Originally Harry should have been at home, but this treatment was delayed by 2 weeks, due to the problems Harry had back in September. So, the military operation! Paul's parents were draughted in to look after Callum and my parents came to sit with Harry at LGI! This was so Paul and I could relax a little and enjoy tea, which we hada lovely   meal at 'the Thai Cottage' followed by pre gig drinks at Tiger Tiger! The senators, the headline band, commenced their set at 9.30 and it was straight away fabulous music and I adorned my dancing shoes! However, not to leave  my parents and Harry too late I had to steal myself away from the rocking music at 10.15 and head back to the LGI. So in the space if 20 mins I turn from rock chick (well I thought so, but in reality probably a dancing baboon, but it was fun) to nurse Sarah, helping Harry urinate into a cardboard bottle and assist him press his morphine button to help ease the pain!

Harry went onto have an unsettled night, just glad I hadn't over done the beer, as tempting with half price drinks pre 9pm, as negotiating unplugging Harry's 3 machines;  helping him out of bed; disconnecting his saturation level monitor from his toe; pushing his trolley stand, not tripping on his wigglies;   negotiating a cardboard bed pan into the toilet (so his output can be monitored) plus not forgetting actually helping Harry the few paces to the toilet, well you can't underestimate the mission!

It was a good night and the oncology ward will be very grateful for the funds too!

So, on the subject of military operations and 2 lives, Friday I had organised tickets to take Callum to see The Mousical at The Alhambra in Bradford. My friend's little girl Rosie was in it. It was also an excuse to give Callum his first theatre experience! Granny and grandad wanted to come too, thankfully as they were able to pick Callum up from nursery after lunch, whilst I made my way from LGI to Bradford. Harry does not like being on his own, so I had organised Grandma and Grandad to
come. Jo a volunteer should also have visited, but alas she had come down with a cold, so I had already asked Janie to visit later in the afternoon, but fortunately she could visit a little earlier! So with the knowledge Harry was having lots of entertainment, I could concentrate on having a lovely couple of hours with Callum. He seemed a little dum struck by the experience at times and found the hinged chair hilarious, when he realised it sprang up, when he stood up! However, he was still and it seemed to be a hit! Rosie was fantastic a credit to the world of ballet and her mummy and daddy!  So perhaps a pantomime this year will feature in our forthcoming festivities!

So, which day Harry will be home I am not sure, I would think another 24 hours, so they can observe his come down off morphine and immunotherapy, but one can never be sure! Sometimes it depends how urgently the bed is needed!

Though as always Harry has been a great patient, so knowledgeable and in control of his treatment! When the morphine shots were not hitting the spot this evening, he asked me to summon the nurse, he overhead our discussion re his morphine and agreed in between his cries of pain that the overal rate should go up!

I was reading an article on Famikystuff4u a website my friend is working on, about hobbies and experiences we present our children with.  Well cancer was obviously never on our agenda for experiences for Harry, but we have endeavoured to latch into Harry's strengths and enhance the skills we can. Whilst outdoor play has been limited and playing football not an option, we have helped Harry enhance his creative spirit, his mechanical mind, his thirst for knowledge, through crafty things, Lego and often looking things up on the Internet! We have never underestimated, Harry's ability to understand what is wrong with him. He knows he has had cancer and had a large lump removed. We feel it has been important that he is a key player with his team of professionals working with him. We explain things in a way Harry can understand and by involving him in as much as possible, means he has some control in a situation where at times there seems to be none! I would never want Harry to just think he has been poorly as, poorly means many things. The amount of hospital visits that Harry has had does not accompany just being poorly! Not many children thankfully get cancer or other diseases warranting such intensive treatment, so for us it has been right to  inform Harry of what his treatment plan is. I also think its right that our McMillan nurse gave an assembly to the school and talked of Harry's cancer in simple terms for the children to understand. Harry has missed school this week, he will probably not get there much next week either, whilst his body recovers. I wouldn't want the other children to think being 'poorly' means you could end up having lots of time in hospital. Everyone is different in what they want their children to understand, but cancer is in no way just being 'poorly'. I guess once this is all over and Harry will just be poorly with a temperature on occasions, he needs to be able to make a distinction between what is 'poorly' and warrants a day off school and what is more serious!

Monday, 8 October 2012

October 8 th 2012 Immunotherapy day 1.

Can't believe it's been 2 weeks since my last blog! Seems only yesterday that Harry was last in hospital. We were on the luxurious teenage ward. Now on our usual ward and in isolation again due to Harry's snotty nose! Apparrently the teenage cancer trust which is a national charity helped fund the teenage unit when being designed and refurbished. Whereas the under 13's don't have access to this funding, they have candlelighters, but as they are a regional charity, their funds just are not in the same league! You also realise just how much the NHS is subsidised! Which is why gift aid is so important! Why shouldn't the government forfit this money when it is lightening their overall spend at the end of the day? Where would the government be without charitable services! I do have to remind myself though that although the teenage ward is at the top if the league, ward 31 is still way above the standard of 41! Though the teenage ward has only 8 beds, ward 31, which is under 13s has 16 beds and ward 41 about 40 beds!

So back onto Harry! Being isolated is  prob not a bad thing due to the level of pain Harry has been in the last 3 hours. He thought his head was going to explode! A side effect of this immunotherapy treatment. He started the immunotherapy around 3 pm and at the same time started on a morphine infusion. Pain anywhere in the body is expected. Harry's pain started around 6pm and got steadily worse. His morphine infusion level was increased around 8.30 pm and Harry has finally fallen asleep, it's 10pm. As he is on morphine his blood pressure has to be regularly checked as does his temperature, so he'll be disturbed on the hour for his observations. I think it's going to be a long night! He has this immunotherapy, which is infused through his port over 8 hours, each day for 5 days. So we hope to be home for Saturday. He has 6 sessions of this course of treatment. This  means every 4 th week till march Harry will have this immunotherapy. We chose to put harry in for this treatment as part of a trial. Research shows that it has added value to aid ultimate survival! We know we are doing the right thing putting harry through this trial, to aid him having a longer, brighter, future, but at the same time it is very hard knowing that Harry was on top form only hours earlier, charging down the corridors of ward 31 pretending to be a racing car, to screaming out in pain! It's heart wrenching! we have been dreading this week. Though trying not to think about it too much, in fact what we have concentrated on is creating normality, getting Harry to school and good times!

In fact Harry has been amazing form these last 2 weeks. He's had a snotty nose and when Harry gets a a cold, being immune suppressed it's hard to shift. But this hasn't stopped him! Last Sunday, he had his long awaited pirate party! I felt the pressure to give him the best time! In fact organising the ball was easier!!

Harry wore his red and white striped shorts, red t shirt with captain Harry on it, a thick black belt with a gold buckle, a pirate hat and he had his parrot for company, that we made out of a urine bottle when he was going through radiotherapy! Harry was as giddy as a kipper prior to his party! We had arts and crafts to start with. Little wooden treasure chests to decorate, little wooden pirate magnets to colour in and pirate hats! Then, there was food and birthday cake. Becky Lister made a fab pirate ship cake! After food, the children played pass the parcel, which I left Marie in charge of, whilst Paul and I reset up the assault course. Though I believe I had the easy job, as pass the parcel proved a little
controversial and Marie put her peace keeping skills to excellent use, meaning all the children finished the game smiling and sucking the lollies they won! So came the assault course, I always under estimate the planning for children's parties and the time management needed, as well as the excellent control needed to ensure the smooth running of such events! Luckily, Harry has a voice loud enough to get everyone's attention and he managed to get all the kids to line up behind him and watch him give the demonstration as to how to successfully complete the course! Having got all the children safely through this, there was one final element, the piniata! A paper mâché donkey with 24 ribbons attached to a door that opens. The donkey gets stuffed with sweets (i also added glow sticks - thank you wilkinsons for being cheap and cheerful!) only one ribbon can open the door and let's the treasures tumble to the ground. That's the theory, but the glow sticks prevented everything tumbling to the ground, thus a quick intervention by mum and then I could shake the treasure over an eager awaiting audience ready to gather what they can into their party bags! Phew! Party over, job done for another year. But most of all Happy Harry! He loved every minute and was on amazing form! I thought the excitement would have meant Harry woyld have slept soundly on tbe Sunday night, however this was not the case. He woke 5 times! Was in a foul mood on Monday. So the best thing was to take Harry to LGI and get his bloods checked. He needed a platelet transfusion. Having had this he slept soundly on Monday night! Yay!

So this week has been about harry getting to school. We await the school being actually signed off giving Harry his medicines, until the he can't stay all day! I am trying to get this organised ASAP so when Harry is well he can go to school as much as possible. It is his right to do so. He needs to feel like his peers, as all these past months he has not been able to do the things they do and take for granted. So no I don't apologise for being a pushy mother, if I didn't fight for Harry, he wouldn't be here! It's my fight that got him diagnosed in the first place! It's also my fight that has pushed for Harry to be assessed for continuing care funding, which I was told Harry wouldn't score high enough to get it and  that Leeds didn't fund for arguments made out of the support tool criteria. Well my pushing, my believing Harry had significantly complex and unstable needs, as well as some great reports written by some of the professionals involved with Harry has led him to gain 10 hours nursing
intervention on a weekly basis! With this input, I can have proper respite, as we can leave Harry with the nurse and go out and well actually do something. We have another 2 workers providing Harry with a few hours a week too. Having fought for services for months, we finally get a few, it's like waiting for a bus, they all come at once! Though, my priority whilst Harry is well is to get him to school. Though, these services are gratefully accepted as we await to see how his latest treatment affects Harry. We still have a few months of treatment to go!

So the ultimate part of the week was Harry going to Silverstone with daddy, Adam and Adam's daddy, Tom! They watchec touring cars race! Daddy took the weekend off work to give Harry an amazing day before this god awful immunotherapy! Harry has missed out on so many planned activities, that this was a massive thing! The first really grown up activity he has done! He was soooo excited when we woke him up at 6.15 am, he was dancing around the kitchen. he remained in good spirits all day and came home about 7.45 pm still full of it and tales to tell me! I stayed at home with Callum and enjoyed a day with him. We also spent the day with Adam's sister Sophie and her mummy Claire! Callum went swimming with Sophie and each of them loved being in the water! So a successful day all round. In fact seeing Harry so animated and alive just made my heart swell and choked me up! Only a month ago he was having high temperatures and we couldn't see him enjoying another day! Yesterday was a million miles from a month ago. It makes us feel like our old selves
seeing Harry so alive, we can breath easily and enjoy ourselves too. Creating fantastic  memories is what life is all about! Those memories that make you smile for years to come are invaluable! Live, Laugh, Love! Without these life is meaningless!

When Harry is well, we intend to do all 3 to the maximum. Let's get this week out of the way and get back onto the fun train again! We all very much deserve it!