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!