Saturday, 31 December 2011

What a year ...

I will have a quick run through, month by month of the year in the Riley household. Hope I don't miss anything.

The new Year dawned with the safe arrival of Harry Thomas on the 8th Jan weighing 7lb15oz. It had been a frantic couple of days as he'd stopped moving and his heart traces were all over the place. It was a huge sigh of relief when I cradled him (after superb birth partner Hanty Raychel held him first)
William went to the docs as a tiny mark he'd been born with started growing alarmingly. The doc thought it was an infected cyst, gave him some antibiotics and referred him to the hospital.
My mum and dad celebrated their 40th wedding anniversary - am sure the secret to their success is the absence through fishing and constant nagging, plus having 3 brilliant daughters (me being the most brilliant) to help them

William met with the consultant who said on looking his lump appeared to be a subdermal cyst, but it needed removing to be on the safe side. An appointment will ebe sent in due course
My darling Madeleine turned 3
Harry was referred back to the hospital as he was a deep shade of jaundice yellow, weekly visits to check his bilirubin count was coming down followed

On the 3rd I carried my sweet William into theatre and held him whilst he was put to sleep, a nervous hour later he was back and very sleepy. The consultant was still sure it was a subdermal cyst and nothing sinister, but as it had started burrowing inwards and close to affecting major blood vessels it was absolutely the right thing to do and remove it.
On the 5th I turned (ahem 37) and my lil sis 35.
Harry had his 6-8 week check and this was the start of his battle. The doc asked us to go back 2 weeks later as it could just be developmental thing, but 2 weeks later, his eyes were still rolling and he wasnt responding to anything put in front of him. Her words (and they still haunt me)were 'oh Lisa I don't think he's seeing' I left awaiting the appointment with the opthalmic team at the hospital thinking my baby is blind or may need bottle bottom glasses

1st APril dawned and thinking about April Fools I took my sweet little baby to the eye team at the hospital. This still remains the worse day of my life as the consultant put in stinging eye drops and looked into his eyes, in silence he called another consultant in and then I knew something serious was amiss. Finally they confirmed they could see some 'raised lesions' on his eyes and needed to refer him to a specialist centre as the word retinoblastoma was springing to mind, but they weren't experts so couldnt say for def thats what it was.
My world came tumbling down, a lovely nurse grabbed Harry as I burst into tears. I knew what retinoblastoma was. We went home awaiting Birmingham ringing, holding onto the hope that it was something else and he would just need glasses. Deep down we knew.
8th April Harry went under anaesthetic and it was confirmed, Harry has Bilateral Retinoblastoma Stage D. Very advanced for such a young age (he was 13wks old) and he needed to start chemo immediately and have a lumbar puncture and bone marrow biopsy done to check it hadnt spread.
3 days later, Harry and I went to Manchester where he had another anaesthetic to have a central line fitted and the above tests done. Chemo started the same night.
The rest of April was a blur really, we were constantly in hospital, or had MAcmillan and socail workers with us, Easter holidays were forgotton as we started out on Harry's journey.

Lots of chemo, line flushes and temperature checks done this month. William gave us all a fright by having a fit whilst at the swimming baths, he needed a 2 day stay in hospital.
Matthew turned 7 and they all had to have eye drops and eye checks to see if they had the cancer whilst we waited for Harry's blood gene results coming back.

Happy Birthday Hanty Rachel - who turned the big 40. She also started to fel ill andlittle did we know what that would turn into
More chemo, line flushes and trips to Birmingham - beginning to feel our lives were controlled by the NHS. Harry also started to suffer some side effects from the chemo as his blood count started to take longer to recover and he stopped gaining weight. Another trip to Manchester where they put a Nasal Gastric tube in - which Harry took great delight in pulling out at any opportunity he could get.

HAnty Raychel was really poorly, and it seemed to take the docs ages to start sorting it out, she was as yellow as yellow can be.
More chemo and line flushes, then bang on school finishing Harry became very ill very quickly and was transferred from our ,local hospital to Manchester, where we were told he had septicaemia, caused by an infection in his line, we had a 2 week stay with strong antibiotics, and when his blood stopped growing live cultures, we were allowed home with a 4-a-day 2week course of antibiotics. Biggest reaction to this infection was that Harry lost even more weight. He was struggling to stay above the 13lb mark. He had chemo and went straight to Birmingham.
William had his 2yr check with the health visitor (Dan was home alone snigger) and sailed through. He is way beyond his years in most things. Think he blew her away when he counted to 20, pointed out all the shapes and numbers then proceded to go thru the alphabet. Clever, just like his mummy

Harry was the colour of snow and started getting bruises everywhere, had his blood count checked, and his Hb level was 6 and Platelet count was 13.
Normal range is 10 and 150, so off we went to Manchester for a blood and platelet transfusion.
Sweet William turned 2
The rest of the school hols passed by in a blur of line flushes and chemo and just before his dose of chemo his line was blocked aarrgg.
Off to Manchester and some clot dissolvoing drugs were put in, he only has one more chemo left, please do not cause his line to be removed

Last chemo hip hip hurray. We faced 4mths on the waiting list to have his line taken out when.....
he became very ill very quickly again,and an urgent ambulance transfer again was on the cards. IV antibiotics till they found he had septicaemia again, caused by an infection in his line, probably due to his line being blocked. He was really poorly, but one fantastic thing happened because of it, his line came out at midnight as an urgent case.
Once we were home, Harry never looked back. He pulled his feeding tube pout for the last time and slowly but surely weight started to creep on

He had a follow up appointment and his blood count back to a satisfactory level, his immune system will take 6mths to recover so we still have to watch him, especially with chicken pox and measles.
His first trip to Birmingham following the end of his chemo revealed it had worked and all the tumors were looking inactive. Nothing new had grown.
We sort of sat back and relaxed ..

Harry gaining weight, still on the lower centiles but he's gaining all the same. I found myself becoming addicted to Twitter
Trip to Birmingham and those laurels I was resting on was ripped out from under me, Harry had grown 6 new seedling tumors. This can happen in the first few months after chemo has stopped
Birmingham 3 weekd later and 8 more grown - don't worry they said. Easy for them to say, its not their baby

Harry had a visit fromn the Visual Impairment team, they will begin their teaching in the new year.
Harry started his tiny baby immunisations again
Matthew was a brilliant shepherd in his nativity service
We were getting ready for Christmas BUT ONE THING STOOD IN OUR WAY... BIRMINGHAM
Having nearly broke my neck on the ice and my dad nearly had his car wiped out to get out of the house, we went down again.
Again he had 8 new tumors grow. I am more than a little concerned then outraged when we then found out these new growths can happen for a year or so, esecially til they turn 2. What happened to the first few visits??
So I am now resigned to the fact that he will have new tumors each time we go, and look forward to the time they say there's nothing new.
We had a lovely Christmas despite everything has happened and vowed that 2011 was unbelievably bad and 2012 can only be better. I pray to god we are right and I will ensure Harry is as well as he can be so he can give his cancer a good kicking. Hate is a very strong word, but I hate cancer.
Hope you all had a good year, and I wish you a very Happy New Year.

Ps I know it waasnt much of a quick resume but what the hey.
Love from Lisa, Harry Danny Matthew Madeleine and William xx

1 comment:

  1. I just wanted to stop by and wish Harry a very happy 1st birthday! =) It's been quite the year, and I'm praying that the next year is full of good news and lots of happiness!