It’s been a long time since I last posted – but take it from me, no news is good news! George’s bloods have maintained really well over the past months with all our hospital visits being routine only. He’s still enjoying going to school and his daily chemo and trips to theatre for spinal chemo are just part of our routine now.
This time last year Make a Wish Foundation confirmed they wanted to grant George a wish. At the time we weren’t ready to accept their offer due to George still receiving very intense chemotherapy and still being too poorly. The lovely volunteers from Make a Wish had come out to our house to chat to George about his wishes which included an ice cream off the ice cream van and to visit the local fire station….! the guys from Make a Wish giggled with us and said they often get this kind of request but really try to make it a once in a lifetime experience for the little ones.
They asked George some questions and through water parks, ice cream, santa, snow, Lego, slides, fire engines and aeroplanes, they came up with three wishes and left to speak to their head office about which one they could make work. Not long after, we received a letter confirming they’d like to send George on an aeroplane to a sunny destination where he can go on water slides and eat ice cream to his hearts content.
It was an emotional time and whilst still facing a few hurdles I don’t think any of us could really imagine being in a position to leave the country. We postponed his wish until 2017 so that we could gauge what life in “maintenance” would be like for us.
And so here we are…. I opened the full itinerary this week from George’s Wish pack and had a little cry – firstly at just how personal and special they’ve made it, and secondly with relief. Relief of how far we’ve come and that he’s so well, we’re actually comfortable with going!
I’ve had to scrape the kids off the ceiling this evening to get them to sleep as we head to Portugal tomorrow morning (if there are any thieves reading this, my house will occupied, I have eyes everywhere and we have a guard cockerpoo who will eat you for her breakfast).
I’ll be honest I’ve had moments of guilt at times, and even considered not sharing our positive news. I felt like we shouldn’t be accepting this at all while George is functioning so well at the moment. But then I look at all his beads of courage, every one of them representing needles, anaesthetic, doses of chemotherapy, port access, hospital stays, steroids, scans, tests and more… groups of colours or shapes of beads that I remember are from the times that I never want to visit again – the ambulance, when the pain relief wasn’t working, when I sat in my living room questioning whether he could breathe properly, feeling scared and isolated and more recently the moment relapse was being investigated…. I can’t even put into words how that really felt. What I can say though is it’s all more than anyone should have to endure in a lifetime, never mind a little boy in the space of a year.
So after all my baby has been through, he deserves this, we all do. His Beads of Courage are going to continue to grow for another couple of years yet – so we’re off to make a little boy’s wish come true – and we will all enjoy every last minute… wouldn’t you?
Sorry for the harsh titles of these blogs sometimes! I’m trying to use keywords so that other families with children with cancer can find us on Google if they’re looking for positive stories.
Latest hospital visit
We’re due an update as it’s been a while hasn’t it. It’s been quiet as I’ve been a busy little bee and George’s is on top form considering, so we’ve not been in hospital for sickness, just routine appointments – go George!
We went into Oncology at Alder Hey earlier this week after school for George to have bloods taken which were then discussed at his appointment on Wednesday. Barry (the port) was given a flush to prevent him clotting up, which was a good reflection of how well George has been – it’s usually accessed more regularly because he falls ill before it ever needs flushing.
The doctor mentioned this week that George’s neutrophils are quite high at the moment. The average Joe’s neutrophils sit between 4 and 11 but George’s need to be around 1 so that the doctors know his bone marrow is suppressed. His neuts are 3.8 right now so it’s a sign his bone marrow has started fighting something off (any virus or infection), or he needs his chemo dosage increasing. We’ve got another two weeks to see what the next move is.
What else is new… Sugar has had a hair cut…. oh and Harriet’s a vegetarian! that news has come as no surprise to a few of my friends. One day she just refused to eat “an actual chicken’s leg!?” as she put it. She’s never had an issue with meat until now… now she’s guilt tripping us all over eating defenceless animals. In her words “it’s like eating Sugar” – our pet dog. I get her point. To be fair to her, I admire the fact she’s made the choice herself, no one she knows is a veggie, she’s doing it purely because of how she feels. She knows her own mind this one.
Giving up work whilst George received treatment
As you all know, I stopped teaching my antenatal classes a few weeks after George’s diagnosis. This decision didn’t come easy, but it was the only way forward. The classes could be quite emotionally demanding and I got to the point where I felt my ladies weren’t getting the best of me anymore. Obviously they all thought I was completely mad still teaching whilst George had just been diagnosed with leukaemia…. maybe I was! I just thought it might help to keep in a positive place.
Anyway, no regrets on that front, I was released from a restrictive contract and free from the monthly payments to the franchise. I could relax and look after my children when they needed me the most. It was during those periods when George was an inpatient, and we were juggling Oliver and Harriet too, I couldn’t imagine being in a place where I could consider working again – and I’d previously only worked 12 hours a week tops!.
Ready to get back to work whilst treatment continues
Twelve months or so later and I know that I’m ready to get back in the game….not ‘on’ the game… those days are behind me 😉 There’s approximately 2 and a half years of daily chemotherapy and theatre for spinal chemo every few months but now we have our routines in place, I feel like there’s a little opening for me to get some of myself back. School are now well versed on what they’re looking out for, we know which friends we can rely on if we’re rushing to hospital and we understand the drill once we’re there.
We all know I love a good chat, I also enjoy helping other people and given my 4 years experience working with pregnant ladies, things are pointing in the same direction. I have had a chat with my friends in the local maternity services and the birthy world and found out that, you know what? I can do something birthy myself! I’m a qualified complementary therapist, and have now trained in a method of delivering antenatal workshops called Hypnobirthing. I have now set up my own birth programme and called it Birth Geek.
I have lots of ideas for Birth Geek, but for now am not going to bite off more than I can chew. I’m running antenatal workshops on a Sunday in Warrington, Lymm and Knutsford and offering mobile pregnancy massage a few days a week while the children are in school. I’ve loved getting my teeth into designing my own website… and final branding is almost there, do take a look.
Not lost the plot yet….
And so a new chapter is beginning, one I never envisaged even 6 months ago – working whilst my child is receiving treatment for cancer!? but look, anything’s possible. I’m just going to keep mindful of keeping a good balance. Given I’ve not been sectioned so far, something is obviously working for us! Celebrating every small achievement, every milestone, taking nothing for granted and living life to the full is not about to change.
George is fine… great in fact! after a few scary days in Alder Hey, he was back to his old self, his MRI was clear and we’ve had Christmas at home. Just wanted to thank my wonderful little sister, Shannon, for coming to the rescue wrapping the last of the kids presents while we were in hospital. Thank you for also holding my hand around Tesco at stupid o’clock the night before Christmas Eve on your one day off over the whole festive period.
Thank you to our friends who as per usual picked me up, gave support, provided food and even offered Christmas dinner!
So a year to the day yesterday was the first day George was hospitalised in Warrington for low blood counts, a limp and fever. Little did we know how our world was about to never be the same again. A year on from the initial symptoms of leukaemia developing, we’re trying to live life to the fullest around George’s treatment and hospital admissions.
This time last week I was telling people how lucky we’ve been, apart from for scheduled visits and the odd temperature here and there, we’ve avoided staying over at Alder Hey and anything too concerning. Today we’re sat waiting to be called to theatre following an overnight stay for an unscheduled investigative lumbar puncture and MRI. Someone somewhere must have read my gloating Facebook posts of festive fun thought…woah… that’s enough Lis!
Yesterday morning George didn’t seem right when he got up, he was unsteady and said “the world is turning”. I put it down to him getting up out of bed too fast which had made him dizzy. He was holding the furniture in his bedroom to get to the bathroom and asked me to support him on the loo. Afterwards he was fine and took himself downstairs to Oliver and Harriet for breakfast. If I’m honest, I didnt think too much of it!
Damien had taken the day off for us to go out for breakfast, do some last minute Christmas shopping and finish the wrapping – a rare moment of just us two while the kids were in school. He took them off on the school run and I lazed around making the most of my rare lie-in. I just asked Damien to mention to George’s teachers that he’d had a dizzy spell.
George must have been in school for 15 minutes tops when the school office called to tell us he seems confused and is standing quite rigid. Damien rushed back for him while I gathered our stuff and called Oncology Daycare at Alder Hey. We were told to take him straight in and if there was any delay to call an ambulance.
The following few hours consisted of George being vacant, staring into the middle distance with dilated pupils even when a light was shone into them. He was weak down his left side and didn’t seem to understand us when we spoke to him. It probably lasted about 5 hours before he started to return to normal again. The nurses and staff were lovely and supportive and kept a close eye on him throughout – we also got to chat to lots of our oncology friends as they passed through for their treatment before Christmas.
I recalled that the day previous I’d had a call from school saying George had bumped his head but there was no mark and he wasn’t upset. Although George hadn’t been sick, the nurses considered him having delayed concussion and he was sent for for a CT scan. That wasn’t a very positive experience… the motion of the moving bed down the brightly lit corridors sent George’s eyes rolling all over the place and he became distressed. He cried and Mummy had to lie like Superwoman (literally!) on the bed holding his hands as he went through the CT machine.
By the afternoon, although George did look to be improving, the ANP looking after us said that they’d be happier if he stayed overnight to be monitored. The CT had been inconclusive and were told it was likely he’d have to go to theatre this morning for an investigative lumbar puncture. They will some spinal fluid under general to be tested for viruses and “nasties” i.e. cancer cells. He’d already had Barry accessed for bloods to be cultured, we knew his blood counts were good, he didnt have a temperature and he’d provided a urine sample. The hospital want an answer as to what has set him off in this way before they can relax.
Alder Hey has a real festive air about it at the moment, there are little Christmas trees everywhere, Santa and even some superhero characters knocking around bring smiles to the kids faces. There were a group of brothers who are boxers who came round the Oncology unit to see all the children too…they were so friendly, nothing phased them. Having been in a position where you’re scared to death of being around children with cancer, I think it’s an amazing thing to do coming here! I have friends and family that have still never stepped foot in the place yet there they are.
George had a restless night, I’m shattered as I kept having visions of him chucking himself out of the bed (even though there are rails on it). This morning he’s perky, chatty and reassuringly like himself. He’s nil by mouth ready for theatre and asking for food constantly – it’s currently nearly twelve and we’ve not been called yet. Daddy has returned from home and we’re being martyrs not eating for him either.
Karen, who was George’s nurse yesterday in Day Care, has already bobbed in to us in our room to see how he’s doing and was well impressed with how bright he is.
I had got into my head that if he was well this morning he probably wouldn’t go for the MRI. I’m conscious he’s going to freak out in it and he has to lie perfectly still in the really loud machine for 15 minutes. I’ve pushed for him to go under general anaesthetic whilst in there but there isn’t a slot available at the same time as his lumbar puncture when he’ll already be under. I just thought with him being seemingly well today they wouldn’t put him through it. However, it’s not the case, although he’s much more ‘with it’, he’s still slightly weak on one side and the doctor would prefer a more detailed image of his head and spine.
Fortunately for Oliver and Harriet, their Daddy has finished work for Christmas now so they’re getting some quality time with him while we’re back and to. Thank you to everyone who keeps messaging offering to have them! I really appreciate your kindness.
We also appreciate the offers of visits, dog walkers, shopping and present wrapping! but i’m keeping optimistic and am hoping these scans and tests are going to be clear and we’ll be sent on our way today. If not, I will most definitely be in touch.
So for now we’re just watching shite YouTube videos and building Lego with George, desperately hungry but not wanting to eat for George’s sake but also a little through anxiety at the same time. He’s saying he’ll be very brave for his MRI – he shouldn’t even have to know what one is, never mind be brave!
Feeling the need to remind myself what there is to be grateful for so here goes with today’s 5 glads!
Glad I finally got to meet a local family I’ve been speaking with online after their little one unfortunately became an oncology patient at Alder Hey recently. We had a couple of mutual friends who’d put us in touch and realised last night we are neighbours on Ward 3B. We chatted for hours last night, putting the world to rights.
I realise that without tough situations like what’s happening right now, I wouldn’t appreciate how many good friends and family members we have behind us.
Glad we got to bump into our friends Erin and Jack yesterday in Daycare and hear how well they’re doing and what lovely Christmases they have planned – something that months ago they couldn’t even think about.
Grateful for Alder Hey… and how there’s no messing about in this place, if there’s something a-brewing, there’s not waiting it out at home, they just keep going until they work out what it is or how they can try to fix it.
The nurses and support staff. They go out of their way to chat, help, support and even make us laugh during our stay.
I’ll keep visualising wrapping presents with a glass of Baileys later… hope every one is having a lovely build up to Christmas and not complaining too much about traffic, shopping, wrapping, and their kids – treasure it all folks! Update you all again soon x
ps. he’s just gone into theatre no problems with a member of theatre staff with a turkey on his head.. what more do you want?
We’ve had stints in hospital over the past few months, treatment is ongoing and George is doing really well at the moment. Parents evening confirmed he’s shining as brightly as everyone else. By the sounds of things, receiving daily chemotherapy doesn’t seem to be affecting school life for him too much other than his low immunity.
George goes into theatre under general anaestethic next week for spinal chemotherapy to be administered via lumbar puncture. We were lucky in that the doctor allowed us to adjust his schedule to bring the procedure forward, otherwise he was booked in for this on December 28th…
Here’s a dull fact for you. Since my remotely-stable adult life began, I’ve collected Christmas decorations from nice places I’ve visited. I’ve got the baubles for the years the kids were born plus festive ornaments from various holidays and special places we’ve been. I like to decorate the tree with the kids and tell them the stories behind each one.
Bear in mind I have the three children, and we all know how kids like a homemade decoration! be it a creepy looking Santa or Rudolph the red nosed turd with sticks in, it wouldn’t be Christmas without some indistinguishable handmade creations coming home from school.
Over the years, in a tangle of Christmas lights, I’ve told the deep and meaningful stories behind our mismatched decs, and cooed over the cute homemade creepy angels. Then discreetly shoved them deep into the Christmas tree out of sight so not to clash with Christmas colour scheme. Ho ho ho!
The Shitmas Tree
Well this year, as we all know, is a very different Christmas for our family. This year we had a sharp reminder how we should be embracing every dam minute with our children, and proudly displaying every ugly decoration they’ve lovingly created. I’ve bought a little tree that sits in the window, proudly dressed in all the decorations the kids have ever made and all the baubles I’ve collected from our travels… the unique little tree tells a story in itself. This year we have our Shitmas tree!
Now I’m not saying the tree or it’s decs are shite. The collective noun for lots of random things where I come from is ‘shit’. “Get your shit together” “pick all that shit up off the floor”… and so our Shitmas tree has been born.
The L word
Life has thrown some huge challenges at us this year, it began unfolding last Christmas with George falling ill and subsequently being diagnosed with Leukaemia. Followers of my blog from back in the beginning will have witnessed what a roller coaster it has been.
Like many people who receive a cancer diagnosis, battling through can be a huge awakening for many. It’s understandable what a change the diagnosis makes to your outlook on life, at the end of the day, it feels like a second chance has been given. Certainly for us with a childhood cancer diagnosis, our perspective has been completely altered – we know what real fear is and anything else just seems like nothing to really get in a tizz about.
I have come to realise that without life challenges, you never really know what you’re capable of – as an individual, or as a family unit. Of course, never in a million years would I have wanted this lesson to have been learnt through my children’s suffering but alas, this is the card we were dealt. Now I’m not going to get all philosophical on you, or worse still start posting crap memes, I just want to share what I’ve learnt about life in the past 12 months.
Lessons this year:
I’ve learnt that children are bloody resilient I can tell you now George will be itching to get back to school with his friends following theatre next week. I however will need to lie down afterwards!
I learnt that there are always people with a bigger struggle than me Every day i’m reminded that so far we’ve gotten off lightly. Yes, in comparison to Gertrude and her child with a snotty nose, we have had it hard, but honestly things could be much more challenging. We hear of, and follow, fellow oncology children whose treatment isn’t working, or where the bastard cancer has come back…. every couple of weeks there’s another.
I learnt what true friendship is. It’s someone holding your hand walking around Sainsbury’s the day before Christmas Eve to make sure you have some kind of Christmas dinner. It’s coming home from the oncology ward where your child is a patient to find your friends cleaning your house, your neighbours delivering Chinese food, and there’s a bottle of wine in a mop bucket. It’s people travelling out of their way, when they have their own families, jobs to get to, just to come and see if you and your child are ok. It’s company, chats and laughter in the face of adversity. It’s knowing your other children are completely happy and well looked after in the hands of someone else.
I learnt that I’m doing a pretty good job of parenting. I manage to feed them, get them to school, encourage them and I try to make sure that their emotional well being is my priority – not having the latest technology, the most expensive trainers… but that stuff inside that you can’t pay for is looked after. I learnt that it bothers my children more if I can’t collect them from school, or tuck them in bed at night more than anything else, because all they need is to feel loved.
I learnt what community spirit is. Without the challenges we’ve faced this year, how would we have known what beautiful hearts we’re surrounded by in our local community. It provides great comfort knowing we’re a part of it.
I learnt it’s best to hide some people’s profiles on social media rather than punching them in the face. Some people are shallow, some people are greedy, selfish, ignorant to the world… we can’t all be the same but we can ‘hide’ their profiles so not to be bombarded with their ‘shit’ day in day out.
I learnt that there are so many more kind people out there than mean people. Seriously, it’s part of our culture to assume everyone else is an arse, however through experience, this is not the case. Most people are decent.
I learnt that nurses do not get paid enough. Comforting myself and my son in the middle of the night, so many thankless tasks and skilled procedures…. these people deserve to be the highest salaries in the country.
I learnt more about my (now) husband this year than in all the years previously added together. And not in a bad way! Nothing like a testing time to bring you together with a new found respect for one another.
I learnt to smile and laugh with other parents on a children’s oncology ward. Who’d have thought it?
Cancer doesn’t choose Everyone is equal. There’s travelling families, families who don’t speak a word of English, families who clearly don’t have a pot to piss in and those who look like they’re shitting money – but none of it is relevant.
I learnt to be brave. Not much more I need to say about that.
There’s more I could add but it’ starting to feel like i’m in therapy!
Get the tissues
So back to the Shitmas tree… given all of the above, as well as our decoration marking the year we became Mr & Mrs Rooza, the most poignant decorations for us to reflect on there are George’s Beads of Courage. They loop the tree twice and are probably going to be double the length by next Christmas with the treatment that lies ahead. I’ve also added a shooting star decoration which we’re calling the ‘wishing star’… it’s for all of our little oncology friends who are putting up their fight, who still have some tough times ahead and their families that are in our thoughts.
Proudly on the front of the tree are some Angel Wings. These are to remind us of the children we’ve met, and their mummies and daddies who are without them this Christmas…
This year will be our best Christmas ever, we’re stronger, we appreciate the time we have together. We’ll be eating whatever food we concoct without any meticulous planning, the kids will receive the gifts we can afford and keeping out of Alder Hey will be a bonus! I will NOT being doing stress….
I hope you all have some form of Shitmas in your home this Christmas, if not a tree, I hope the sentiment is there anyway.
Just in case you were wondering if we all sing carols and hold hands of an evening now here’s a reality check –
Damien is currently sat stitching tinsel onto George’s Angel Fairy Ballerina costume and it’s 10pm, the night before it’s due in.
I won’t lie, as well as the shitmas tree I still have a 7ft Christmas tree in the other room with a <patronising tone> colour-scheme
The dog released it’s anal glands the other day after getting its head stuck in a plant pot holder and the house still smells of fish.
Sugar had her uterus removed yesterday and is walking around in a babygro to stop her chewing her stitches. It requires me to undo her arse buttons every time she needs to go to the toilet. About a hundred times a day.
Merry Christmas one and all.
Note: I know a few of our friends follow All about Erin and helped fundraise for her to get to America for life-saving treatment. We’re also supporting Jenson’s Journey, another little boy from Warrington who has leukaemia now after battling lymphoma over the last few years… so unfair, I know his family would appreciate your support – you can like his page here.
I’ve had a few people highlight that I haven’t posted in a while, asking after us and how George’s chemotherapy is going, so thought I’d give an update.
Things are normal – our new normal anyway, hence the radio silence. If you do keep up via the Facebook page or on Twitter you’ll have seen the little life updates from Instagram or when I’ve tagged us in Alder Hey.
We enjoyed our trip down south to visit family in the last school holidays and I survived the “beautiful” singing all the way in the car by the kids. Whipsnade Zoo was great and it was lovely to spend some time with our family there. The drive home wasn’t so enjoyable late at night trying to navigate alone. The kids were sleeping and I was diverted off the M6 TWICE back to Warrington! Anyway, I lived to tell the tale…
Temperature spike during maintenance
The following couple of days we were in and out of Alder Hey as George was poorly. He’d spiked temperatures and needed intravenous antibiotics through his port, plus the usual blood tests and cultures, snot samples and all that. Imagine someone sticking a tube up your nose to suck out the snot! The tests came back showing he had 3 viruses that may linger but the hospital were happy he should be able to fight them off with the white blood count/neutrophils he had. He’s gradually improved since then and thankfully he was over it by the time he was back in school.
Back to school
We’ve been back at school for a couple of weeks now and had Halloween and Bonfire night in between. We managed to host our usual Halloween party, that got messy and then hid indoors on the 5th November with Sugar the poo away from the noisy fireworks.
George had a couple of emotional days after the first week back crying in school and crying at the gates saying he just wants to go home with Mummy. Broke my heart…. but we both sucked it up. The teachers were as lovely as usual encouraging him and talking about what lovely plans they had that day. The school office called me as soon as I got home to tell me he’d settled so I didn’t spend the day fretting.
Oliver ran for his school in cross country at Walton Gardens last week and has been enjoying playing basketball. Harriet’s being graded for her first karate belt next week. She’s still spending some of her time as her alter ego “The Carrot” or pointing her finger up off her forehead pretending to be a unicorn quite a lot. I must say the finger doesn’t look like a unicorn horn, it looks more like something else that’s a little unsettling as she trots around the playground. She is also enjoying signing choir (that’s signing and singing!) and will be involved in a few choirs over the Christmas time. We’re not sick of the Christmas songs already, honest.
Damien and I were really pleased with the big reveal of what George is lined up to be in his first school Christmas performance. One for the family album, that he tells me he chose himself – none other than a Christmas Angel Ballerina! complete with wings and a tutu. He’s going to look beautiful!!
We had our first telephone maintenance appointment last week which felt bizarre. We’d gone in to Oncology Daycare at Alder Hey on the Monday for George to have his gripper removed, as he’d been in with temperatures a couple of times over the previous days. It had been left in in case it needed accessing again to save him having to keep having the needle into Barry (the port). While we were there George had his bloods taken so that the Doctor could decide what dose of chemo he should change to if need be on the Wednesday.
The call was pretty straight forward apart from me flapping a little over what numbers go where on the sheet. Ultimately his dose had stayed the same anyway but I had to mark down the information correctly to prove we’re not morons (or pretend we’re not!) and keep on telephone maintenance! no pressure.
We’re back for more blood tests next Wednesday and George will be going in to be checked over the by the doctor again.
Losing the plot
I feel like I’m going a little bit crazy at home now all three kids are in school most of the time. The dog has more walks than most of the dogs on the street added together! half the dog walkers on the park know my life story and I don’t even know their names. I must spend a fortune on cake and lunching out because I can’t stand my only purpose being housework and the weekly shop. I know! I know! I shouldn’t complain, I know i’m lucky to be in this position, but I don’t do “nothing” very well. I’m angry with myself for not throwing myself into decorating and cooking wonderful meals like a good little wife but it’s dull, and it’s not me.
Before anyone starts – I’m already volunteering at school, getting more involved with the PTA and have been quietly setting up a little business in the background.
The anniversary of when I think George’s health started deteriorating last year is upon us already… it was November 2015 when he first started with temperatures and was having antibiotics for tonsilitis – which is quite common in patients who end up being diagnosed with leukaemia. I can’t believe how affected I am by the thought of Christmas approaching. Oh I will be trying my very best to enjoy every last second this year! it’s just hard to not reflect on being in Warrington Hospital last year, and all that we / he went through in the build up to his diagnosis.
Things have been seriously shit since last November, the worst thing our family has ever experienced! From the amount of time the children were passed from pillar to post and how poorly George was from the side effects of his treatment. I thought that getting to this point with his treatment working, him being well, his hair growing back, him attending school… no wheelchair, no impaired sight, memory loss or any other problems… the fact that he has started to actually read real words in his little school books and he’s a flippin’ fairy ballerina in the sodding Christmas play! I thought I’d be doing the bloody conga into that school playground! But I’m not. I just feel scared it will come back.
It’s not the most positive paragraph to end on for now, the way I feel is going to be fairly common amongst parents in my position and I do keep reminding myself that the chances of relapse are pretty low. For now, I’m going to continue distracting myself, by mithering my friends for brews, eating cake and walking the dog that has a better social life than me. If all else fails you might find me trotting around like a mythical creature with a finger-horn or taking on the alter ego of a root vegetable.
Last week George officially moved on to a part of maintenance that allows us to spend less time at the hospital. We still have to visit just as much as he still needs his blood tests, but we don’t need to hang around as much for consultant appointments. Appointments with the doctor are still fortnightly but we now have every other appointment over the phone. We discuss George’s blood test results, how he’s been in himself and they then tell us what chemo dose to adjust to…. feels like a lot of responsibility but really, we’re writing on a document what the new dose is, and following that. I believe this isn’t something that’s available to every family (before any oncology friends/followers wonder what’s going on!), it depends on diagnosis, treatment and the stage your little one is at, I’m also not sure it’s something that’s offered at every hospital either.
George’s “good” cells are doing well at the moment so Dr Keenan increased his chemotherapy dose again. They need to be suppressed a little (with chemo) to make sure any leukaemia cells don’t have a chance to multiply.
Everything else is the same with treatment with regards to going to hospital when his temperature gets to 38 degrees, he still needs his port flushing monthly, has theatre every 12 weeks for spinal chemo and at the end of the day, if there’s anything we’re concerned about, we go back to fortnightly doctors assessments or drop everything and go if it’s serious!
It’s the end of the George’s first school term, Harriet’s first term in Year 4 and Oliver’s last ever school year in a primary school! Treatment and appointments have only really taken George out of school for a total of 2 days as we’ve managed to get him back in for a half day after his appointments. There’s been a week’s worth of a medicine he had to take as there was a suspected chicken pox outbreak but other than that, he’s not been sent home ONCE since starting in reception… he’s not had any temperatures during school time (we’ve had a couple of weekend visits) so we couldn’t have hoped for a better start to big school for Georgie-Roo.
Just as we managed to get into the swing of juggling hospital visits, homework, spellings, reading, after school clubs and classes etc for all three kids, we had the pleasure of George’s class dog-teddy, Doodle, coming home for the weekend. Those with kids who’ve experienced a class teddy before will understand what a joy that is! And for added pressure, we were the first to have Doodle this year so had to set the precedent…. you’re supposed to record/photograph your weekend’s adventures, people take him on their holidays, he’s been to Lapland in previous years for God’s sake! How were we going to make a weekend in pjs scratching our arses look like an educational adventure?!
Well…. we didn’t! but luckily for Doodle, he wasn’t due back in until the Wednesday and George was due at Alder Hey the same day. So off we went badgering every member of staff we dealt with in Oncology for a photo. Thank you to the lovely team for being so photogenic 🙂 you know you’ve made it in life when you feature in the Rooza blog 😉
It’s now half term and I won’t know what’s hit me with all three of the little loves around. We’ve got lots to celebrate as all three of them are doing great at school… it’s also D-Day for the final high school submission for Oliver, who we now know passed a grammar school entrance exam – you think choosing a primary school is a challenge? wait til you’re up to high school choices with over-subscription, catchments and feeder schools to deal with <insert arrrggghhhh face here>.
We’re kicking off half term, leaving Daddy and Sugar behind to visit our cousins in St Albans and hopefully will hit the zoo. Wish me luck for tomorrow on the M6 with a gang of kids whose current favourite pass time is worse than them all arguing! They sing out of tune HYMNS full pelt together!
The support for our family is still going strong this week! A team of the kindest (craziest!?) guys are spending three days cycling 400 miles to support a charity that hope to send our family to Lapland to visit Santa.
Rays of Sunshine grant wishes for youngsters suffering serious or life-limiting illnesses and have agreed to grant George a wish in the future to meet the real Father Christmas! Paul Wilson, Gary Cook, Rick Wright and Neil Stokes are setting off this Thursday along with their service driver, Lee Paterson and donating all funds raised to Rays of Sunshine.
The guys have spent the last few months training and raising funds to give to the charity, through injuries and illnesses themselves. I’m still finding it hard to accept everything people are willing to do for us!? We’re very proud of all them, as I’m sure their families are too.
Their efforts have also been featured in the Warrington Guardianand for those who also want to donate, you can visit their JustGiving page here. Unfortunately we won’t be visiting Santa this Christmas, as George’s journey through this only began in January this year. However with at least 3 and a half years of chemotherapy everything that goes with it in the treatment for leukaemia ahead of George, we will hopefully get to accept his wish in the near future.
We feel so lucky to be part of such a supportive community with selfless, caring people wanting to support us through every step of the way. Thank you so much to everyone involved and to all those have been by our sides since this all began.
Tomorrow is the next blood test, consultant appointment and chemo adjustment if necessary at Alder Heyfor George. It flies around doesn’t it! We’re hoping for a weight gain as George’s doctor was concerned with how much he’d lost over the last few weeks. He’s been stuffing his face this week though so I’d be surprised if he has lost any more.
We’re on chicken pox alert at school at the moment as another little one has come out with them, they’re not in George’s class but their sibling is, who hasn’t had them before either. The parents and the school have been fabulous and were well on the ball with it, informing me so that I could liaise with the hospital. The little boy’s Mummy even kept him off school worrying about George, when her son isn’t actually showing symptoms…. just another example of how caring people are. Following a chat with 3B Daycare at Alder Hey we were told that, at this stage, as long as George hasn’t had direct contact with a child with chicken pox, then we should all carry on as normal. At the end of the day chicken pox has a long incubation period of 7 – 21 days and everyone can’t start keeping their children off, nor should we keep George off as it could go on forever!
Chicken pox for a child with leukaemia can be serious due to being imuno-compromised whilst on chemotherapy. However, as long as we’re aware when it’s knocking about, we can keep an eye out for symptoms in George. George isn’t immune to chicken pox as he’s never had them and being in school, there’s a pretty good chance he’ll get them at some point. At the moment, if he came into contact with someone carrying them he’d have antibiotics to help him at home, then if he contracted them he’d be in hospital for around a week to be monitored and given medication. This is a risk we take with him being in school but are confident that it’s better for his all round well being, to be in a school environment, having the chance to develop friendships and grow up with his peers. At this point everyone around him is so well informed and attentive, we’re confident he’s in the right place.
So, if you follow us on the old social media, we’ve not had too bad a few weeks with some nice Autumnal walks with Sugar, viewing high schools for Oliver (argh!?) and cosy nights in with the kids. We have tomorrow’s hospital trip to get out of the way tomorrow hopefully with some positive news, then it’s Oliver’s 11th Birthday on Thursday as well as the lads starting their 400 mile ride. I’ll follow up the blog with news from tomorrow when I can, and if you don’t already follow us elsewhere then you can do on Facebook here, on Twitteror Instagramget on it! Sometimes it’s easier to share a quick photo or note of how we are at hospital than write War & Peace on here 🙂
Good luck to Paul, Gary, Neil and Rick! Don’t get too saddle-sore, thanks to Lee for being their service car driver, just as important for it all to happen, keep safe guys! x
Just a quick one tonight to let everyone know that last Wednesday’s hospital trip was okay. The blood counts that were concerning us have now really picked up, but to the point that they’re too high so the chemo has been increased hopefully just enough to get the counts to the ideal point.
George bowled us over with his courage and bravery from being nil by mouth, having “Barry” accessed with the gripper to going under general anaesthetic and coming round again without a tear. I’ve got a Vlog to upload of that day which I’ll put up later in the week.
He had his numbing cream on before we left home and wasn’t allowed anything to eat while Oliver and Harriet sat eating their breakfasts. Daddy took George to hospital while I gave Sugar and quick sprint around the park and took Oliver and Harriet to school. I must be honest, I had another wobble on the way to hospital as there was a bloody ambulance on the M62 blue lighting all the way. It took me back to 5th January this year when I had to follow the ambulance with my own son in it to Alder Hey the day before he was diagnosed.
I made it to the hospital just in time for George going into his consultant. It was a relief to hear that his neutrophil count had picked up, they were just higher than the doctor would like this time so the chemo has been increased now to bring them down again. The doctor was a little concerned at George’s weight loss as he’s lost 1.5kg in two weeks, that’s quite a lot for a little person. It’s been put down to the fact that he’s started school and is much more active. I have had a chat with his teacher since to double check he is actually eating his lunch which she assures me he is, he’s a great little eater. The concern will be if he’s lost weight again, although I’m not sure what it means for him if he has… just another waiting game.
So following the clinic meeting with the consultant, we went through the motions that we’re all now prepared for. Karyn, the lovely nurse who has never missed “Barry” with the gripper was on, so that was really straight forward and relaxed. We were called to the theatre waiting room where George watched Toy Story on the TV then blew me a kiss goodbye, and off he went for his sleep and lumbar puncture for spinal chemotherapy. He has this spinal chemo because the oral chemotherapy that we give him at home doesn’t reach the spinal cord and fluid around the brain. Leukaemia cells can travel into the fluid that surrounds the spine and brain, so during the maintenance phase, he has to have this procedure via lumbar puncture every 12 weeks.
After his theatre trip, he was wheeled back up to the ward, staying lay flat as directed for about an hour. He was absolutely ravenous so ate half of my butties before his own picnic arrived along with his special request of chocolate ice cream! The kitchen really look after them.
George had been really looking forward to going to theatre because A. he got to have a sleep and B. he gets a present for being brave. Mummy hadn’t been very organised so he got to choose which Transformer he wanted from his bed on my phone that day. Thank you Amazon Prime, Optimus Prime arrived the next day 🙂
So all is good in the hood at the moment, we’re back at Alder Hey again on 5th October all being well, so we’d better get fattening George up in the meantime!
Georgie was straight back to school on Thursday and on Friday I had another little emotional moment, but for a lovely reason, he came out of school with a Character Award for Courage… for joining in with a dance lesson even though he wasn’t sure he’d like it! Bless him, cracks me up.
Just another quick THANK YOU to our lovely neighbour Laura (not Ian, he can’t be arsed reading the blog..I’ll Vlog another time!), for having Sugar Poo over for doggy play dates with Teddy their sausage dog while we’re at Alder Hey. You’re a star! x
Tomorrow, Wednesday 21st September 2016, will be George’s first trip to theatre for a lumbar puncture to give him spinal chemotherapy since he started big boy’s school. He had to come out of school today to go to Alder Hey for a blood test in case he needs any blood transfusions before tomorrow’s procedure.
I’m sure if it was one of us adults going to theatre under general anaesthetic we’d probably be in bed for the week following, feeling sorry for ourselves. Providing all goes to plan there’s no doubt that George will be back trotting into school on Thursday. When I say trotting, I mean, whining for me to carry him in to school because his “legs hurt”, only to spend the day running and riding bikes around with his friends with no pain at all… funny that.
I’m not really nervous about the actual procedure as we all know the drill now, particularly George whose only thoughts are “will I get a present if I stay lying down afterwards?” (this is to prevent the chemotherapy reaching his brain and giving him severe headaches if you remember). I’m more nervous about his blood test results and where they’re up to.
George has been on reduced chemotherapy for 5-6 weeks now because his neutrophil count isn’t where they want it to be, it’s still quite low. Neutrophils fight infection and are “good” cells. He had a bad cough, it reached its peak and has gone now but his neutrophils have still remained low. He’s borderline severely neutropenic… not that you’d be able to tell by looking at him. Reduced chemo is not what we want, shite as the side effects can be, we want to feel like he’s on a decent dose to prevent relapse, but then too much chemo is what is likely to knocking his neutrophil count down! you can see the issue here.
We know that relapse whilst on treatment would be quite rare, it’s when he comes off treatment after the 3 years that the chances of it returning increases – makes sense.
I read a lady’s angry rant on a FB support group for parents of children with cancer recently. This lady was p*ssed off because her child has just finished treatment, and other non-cancer-parents keep saying things like “well at least it’s all over” and making references to being able to relax now. No. Folks, be mindful that coming off treatment, depending what type of cancer they’ve had, will be worse for that Mummy or Daddy (or person themselves!) than a lot of their experiences so far – and there will have been some baaaaaaad times believe me. Yes, their child may no longer experiencing the side effects of chemo, but oh my god, relax!? I’m sure it was completely innocent comment, people just don’t know what to say.
George still has years of chemotherapy treatment ahead of him. We have this dodgy blood count which will probably just be nothing, but I’m constantly on pins, looking for a limp, fretting over a temp, worrying when he doesn’t feel like eating his tea or just looks slightly off colour. The first thing that pops up into your mind is that the leukaemia is back.
George finishes his treatment in the Summer of 2019 all being well. I hope that, if only the followers of my blog take something from this post, that will be a few more people who will be a little more mindful of the language used when speaking with the parent of a little survivor (or ANY cancer survivor for that matter). Yes we’ll reach milestones, yes we may now have a new lease of life, we may view the world completely differently. But we’re not all kicking back and chilling because our child has a full head of hair, or is attending school, or their last dose of chemo has been taken. The constant fear of relapse is always in the back of our minds, whilst getting on with life, living it to it’s fullest with those we love.
On a lighter note, this week has been a week filled with having places to be and relaxed doggy walks… yeah it doesnt sound like me, the relaxed dog walks that is. In reality, the dog is currently refusing to walk unless it has canine-company. I’ve somehow ended up over-socialising my bloody dog as if that’s a thing!! She already looks like me, now she can’t cope without mates like me! So we’ve been practising going out without half the dogs in Warrington… Look at her face on that photo, that’s what I’m dealing with.
Kids and school-wise we’ve had 3 lots of homework, we’ve got 3 lots of reading, 2 lots of spellings, basketball training, basketball matches, karate, swimming lessons, art and craft club and running club this week. That’s around hospital twice for George, shopping and we’re about to start viewing high schools for Oliver… I’m doing my best at empowering the kids, teaching them right from wrong, teaching the dog not to jump up and nip anything that moves or drag its arse along the floor.
Suffice to say it’s Tuesday and the gin/wine/turps is calling me….