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!
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
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….
This week George was in Alder Hey Children’s Hospital for the first of his theatre trips of the Maintenance phase of his treatment. He was in having intrathecal chemotherapy which is chemo via lumbar puncture into his spinal cord. This is what he’ll have every 12 weeks for the next few years as part of his treatment for Acute Lymphoblastic Leukaemia.
I shared a video via our Facebook page of him playing and trotting around 3B Day Care whilst playing with his little aeroplane that he’d chosen from the “bravery box”. He’d been nil by mouth since the night before and wasn’t able to have a drink, he’d been cool-as having Barry, his port, accessed, and was waiting at that point to be called to the theatre waiting room. Had it been me waiting to go to theatre in his circumstances, I’d have probably had my head in my hands and no saliva left!
It was quite a poignant moment for us, given 6 months ago we’d only just learnt of George’s leukaemia diagnosis and knew little of what lay ahead. All those times George would have completely had enough, crying and kicking off, but the poking and prodding had to continue. The stress of administering anaesthetic , pre-meds to calm him, having to stay lay flat after theatre for an HOUR!… the lovely staff (and other parents) trying to reassure us that one day, he’d be ok with it and that they’d seen it all before. I couldn’t ever believe that any of it would be “normal” as I avoided eye contact with people for fear of I, myself, having a melt down too…
Now look where we are, I know it’s not always going to be completely smooth but George is so happy to go to hospital. Everyone knows who he is and shouts his name as they walk past while King George gives them the royal wave. He knows the drill, he loves the nurses, he plays with their equipment and says he wants to be a doctor.
When George was first diagnosed there was another family on the ward with us whose daughter had also only recently been diagnosed with ALL (Acute Lymphoblastic Leukaemia). Their little girl was experiencing some rough side effects and I remember talking to them and being so frightened about the future. The thought of being in maintenance and things being more straightforward seemed ridiculous to even consider.
On Wednesday when George was in hospital for a blood test, we spoke to Piper and her mum, we were laughing, smiling and celebrating as they’ve also moved into maintenance…. I’m sure there was even some running man dancing. I remember looking at people like us, just after George’s diagnosis, when things were hard, and thinking how could possibly be laughing!? it’s funny how things change.
On Thursday, I also popped in to visit little Theo’s mummy, he has been in hospital, in isolation, for months so thought she might fancy a Costa. I couldn’t stick around as I was waiting to be called to get George from recovery but his lovely Mummy passed me a gift for George’s birthday. He enjoyed opening it once he’d come round, thank you so much Natalie – what a thoughtful gesture, he’s worn his George Pig top this weekend.
We were also sat with Erin (the little girl we’ve met who has benefit from a Little Princess Trust wig) on Wednesday and she was in theatre at the same time on Thursday too. It was nice to chat with her mum and to hopefully be able offer her some comfort as we move forward as Erin was diagnosed more recently. I told her about the 19 young girls from our children’s school and the locality, that her photo inspired to donate their hair to The Little Princess Trust. Erin and her mum thinks it’s fantastic!
Some of the girls have already had their hair cut and are looking great 🙂 as is the fundraising! we’ve smashed the target and not even half of the girls have had their hair cut yet. We have the local newspaper coming to photograph our little heroes all together this week once they’re done. Harriet’s hair chop is this Tuesday, she can’t wait.
I overheard her in the bath with George earlier talking about how he’s lucky he doesn’t have to wash his hair at the moment. She’s so lovely though, she told him not to worry though because it’s going to come back one day. She also sat telling him that she’s having hers cut off for little girls like him this week. Harriet she wants to make them feel happy again – my heart could burst with pride.
Another proud Mum moment was Saturday when l got to watch Oliver play in his first basketball match for The Eagles. He was great, given he’d never played before, he charged straight in without hesitation amongst the opposition. The other team had quite a few high level players but that didn’t phase him at all, he kept getting the ball and generally made the game more difficult for them. It’s great he’s got something for himself that myself and his dad can take him out to. He was too cool for school not posing for a photo!
George was absolutely made up this week as well – Thank you to our lovely neighbours, the Tsangs, and their family for George’s really generous gift. The family had done some fundraising through their business and all put in to buy George a battery operated digger, some big Lego storage containers in the shape of Lego of course and a fire engine tent. He’s one very lucky boy to have you all as friends, as am I.
It’s the end of school year this week coming for Oliver and Harriet, a bit of an emotional one for Harriet as well with her teacher leaving. We have George’s graduation tomorrow and a visit from George’s teacher. I can’t believe we won’t have the comfort blanket of Playdays anymore 🙁 gifts for the teachers just don’t seem enough to signify how much they all mean to George and us as a family. I’ve looked through George’s keyworker file that details his journey since he started there. It’s really sad to see the photos from last year when he’s quite obviously poorly but we didn’t realise. Then the photos as he changes throughout his cancer treatment, i’m so glad we kept up with attending preschool, I wouldn’t have felt as confident as I do now about him starting school without them.
Prepare for an emotional post as we get the kids sorted for school this coming September!
So we’ve got lots going on, we’re excited for what the summer will bring and feel elated to be able actually make plans to get away for a break in the UK.
A few months back Kerry, a lovely little friend of Harriet’s asked if she could get her hair cut to raise money for George. Harriet jumped at the chance of doing some fundraising too and together with Kerry’s mummy, we started our little campaign.
It became obvious after a few days that there were more little girls in the school who also wanted to get involved and our team grew. We’ve organised ourselves this week, finalised the details and confirmed we’re choosing The Little Princess Trust, the charity who create real hair wigs for children with cancer, to raise money for and to donate the hair to.
George and I met a lovely young lady at Alder Hey not so long ago called Erin, who also has Acute Lymphoblastic Leukaemia. She had lost her waist length hair within weeks of diagnosis and had received a gorgeous real hair wig from The Little Princess Trust. We’ve seen first hand what a difference it’s made to that little girl – imagine what it must be like as a ten year old girl losing all of your hair. TLPT also help children who’ve lost their through other conditions, like alopecia.
Our team has grown and there are now FOURTEEN very brave girls from Woolston Community Primary School going for the chop – at least 7 inches of hair is being cut from each person plus there are three big sisters/local friends and two Mums getting theirs cut too! That’s EIGHTEEN altogether!?
The school community and George’s preschool have been amazing at pulling together for us as a family, raising money for us and causes close to our heart. This selfless act by a large group of girls/ladies is yet another positive story to add to our ever growing collection.
The fundraising page can be found here – Thank you to everyone involved – our Harriet, Kerry Hennie, Olivia and Grace Wilson, Kira Linley, Rihanna Thorpe, Libby Naylor, Erin Osborne, Imogen Cairns, Isla Dale, Payton Chesters, Charlie Fletcher, Katie Rudge, Abigail Shaw, Bianka Toth, Becky Coates, Charlotte Isherwood, Sarah Bursill and Michaela Hewitt! The photo of you all together with your bobs and ponytails in hand in a couple of weeks is going to be an emotional one… Harriet has such a gorgeous group of friends.
Speaking of Harriet and gorgeousness, she’s messy, quirky and a bundle of energy ALL of the time, traits that I wouldn’t change for the world (ok maybe when i’m hungover….), she has a huge heart and spends most of her time in a fantasy world full of “pink fluffy unicorns dancing on rainbows” so she tells me. She’s barking mad, feisty and when we talk about how her day has been, she can always tell you something amazing that happened. Even if she found a stone, named it Fred and it’s now in a special box in her bedroom!
There are days when she’ll share something that’s made her sad. Her favourite teacher is leaving and she’s quite emotional about it. It’s been a tough year for my little girl and I feel Miss Taylor has supported her in school just by being there for her when she’s been most vulnerable. I know Harriet loves her to bits I just want to say thank you for all that you’ve done make life a little easier for Harriet, I know she’ll never forget you and I hope you inspire my daughter to travel one day too x
Here is a piece of artwork Harriet created recently which I think says it all really, it’s up on our wall and is the reminder I need sometimes that I can’t be doing too bad a job of being a Mummy.
It says “It doesn’t matter what you look like on the outside, it’s what’s on the inside that counts”
She thought of that herself and says it’s for her Georgie.
I know some people sponsored Harriet the last time I circulated a fundraising page (which has been added to this campaign!) but if you didn’t, and would like to, you can do so here.
This week was George’s final week of “Delayed Intensification” <fist pumps the air> I’m breathing a sigh of relief that his treatment should never be as strong as it has been over the past couple of months. Barry the port will never receive chemotherapy again… I’m sure of it.
We do need to keep Barry (the port) though as George will still be receiving oral chemotherapy for the next three years. Access is still required for giving him blood transfusions if he needs them, taking blood for testing and giving him fluids/medication if he’s ill or experiencing bad side effects. We will be going to Alder Hey every fortnight for a blood test followed by clinic the next day (also at Alder Hey!) for an appointment with a doctor to adjust the chemotherapy dose based on his blood test results.
George will still be going to theatre under general anaesthetic for spinal chemo and bone marrow aspirations every 12 weeks for the next three years too… so while this phase seems like nothing compared to the last 6 months, it’s a long slog. This phase of treatment is to prevent relapse.
Who the hell is Barry?
Just a reminder of who Barry is for those who only joined us more recently. The lovely nurses at Alder Hey encourage the children to name their line that’s inserted into their chest. George being George couldn’t choose something cute and friendly sounding… without thinking he just said “he’s called Barry”. He’d named a Shopkins toy he had “Barry” the day before whilst playing something silly with our friend Nic, he got a lot of laughs so that’s it now. The nurses say they’re giving Barry a drink or a wash or some medicine.
This week Damo received a cheque for funds raised by his good friend Haynesy back in Norwich. Haynesy successfully completed a biathlon 21st May, running 15 miles around Norwich followed by a 50 mile cycle from Trowse to Beccles in Norfolk and back. We just want to say thank you for thinking of us and well done for completing it in great time! 5 hours 43 mins!
We know you and all of Damien’s friends down there have felt pretty helpless at times so we just wanted to assure you that you have made a difference – starting with Legoland this week! George (and Damo’s) favourite pastime in a theme park!
We’ve also had many friends taking part in Pretty Muddy Cancer Research events over the past few weeks too, thank you to all of you who ran for George. I know there have been at least 5 of you with Georgie Roo on your tops, I’m glad I wasn’t there as I’d have been an emotional wreck! Just want you to know we appreciate it girls, we’re very proud x
Proud of Lady Harriet and friends
Speaking of being proud, myself and some of the other mums from school are in the process of organising a sponsored hair cut that our daughters have chosen to be a part of. Harriet and her friends are going to be having at least 7 inches of their hair chopped off in order to send on to The Little Princess Trust. Their hair will be made into real hair wigs for children who have lost their hair as a side effect of their cancer treatment, like George.
George being the age he is, and being boy, has not had to suffer the same emotional trauma that young girls go through. Bearing in mind this on top of everything else! the painful, uncomfortable treatment, the diagnosis and uncertainty – hair loss may seem small in the grand scheme of things, but for young girl (and boys really) it’s like their identity is taken away as well.
Given the amount of brave young ladies we’ve met since George started his treatment, we felt it would be the least we could do. I think it will also help Harriet feel like she’s a part of something positive too 🙂 she’s so pleased that quite a few of her friends from school are joining her.
This week we have a blood test and a consultant appointment at Alder Hey to tell us what happens from here on in. Maintenance officially begins on 1st July and we hope to spend the day celebrating with the children.
The little graduate
Tissues at the ready, I cried when Michelle, the photographer that works with Playdays, handed me this photograph. I cried because of how beautiful it is, how she’d been so kind to have it put on a canvas. It will always remind me of the fight my little boy was battling when it was taken. His hair had started to fall out at this point and Michelle came along even took a few special photos of George with his friends too.
George is “graduating” from Playdays next month for another big phase of his life as he transitions into school. We’ve got his graduation to look forward to, taster days at school and uniform to try on! I can’t believe how quickly it has come around or that I’ll have THREE school age children by September.
I’m sad that this huge chunk of time has passed with so many hospital trips, treatment and worry when he should have developing like all the other little ones to prepare him for “big school”.
However, it feels right for him to be moving on with all the children he’s established friendships with, for his sanity and mine! I know I have nothing to fear with his big brother and sister being around, he’s also got 15 friends from Playdays moving up with him who have known him right through all of his. They accept him for who he is and treat him like everyone else 🙂 We’ll have the parents moving up with us too (thank God!), who have been there to give me a reassuring smile or hug at the Playdays door…plus the parents of children in the rest of the school who I’m lucky enough to call good friends. We’ll just be sad to not be in the care of the wonderful staff who go that extra mile.
George is probably going to have hundreds of new big brothers and sisters looking out for him come September, we love the school and the teacher he has. It’s a whole new chapter that he’ll take in his stride just as well… and if not, we’ll adapt and wing it as we go along.
In March we started fundraising for our garden project to help make life a little easier for us and the children whilst George is undergoing treatment for leukaemia. I blogged about it back then, about how our old garden was a bit unkempt and swampy, some of the fences were on their way out and the space wasn’t really being made the most of.
The response was amazing, our target was blown out of the water
enabling us to buy the very best materials and add finishing touches we’d never imagined! All this was possible because of the love and generosity of our/George’s followers and supporters, friends and family. Whether you took part in an event, a challenge, shared our story, donated time, people power or money, the garden has had a complete overhaul and we love every bit of it.
I’ve included as many pictures as I’ve built up over the weeks and will outline what your money and efforts have contributed towards.
The garden has been raised to the same level as the step from our house so we no longer have an issue with flooding. Given the recent huge downpours it’s been great to not have to avoid going outside. George also doesn’t struggle with access either now 🙂
Decking – love it, looks great, easy to clean, no difficult steps for George to negotiate when his medication gives him sore joints.
Some fence panels replaced to match others in places where they were falling through or rotting.
Newly installed stable-door-gate allowing easy access to the park behind us. We now have the ability to watch the older children and make sure they are safe whilst George is in the garden. It also keeps the local doggies out when the kids remember to close it!! I found a chocolate lab in my kitchen and it’s shitzu mate running circles around the garden last week.
We now have garden furniture! it’s been nice to sit outside in the milder weather whilst the kids have played. There’s loads of room for the whole gang, comfortable and modular, so we can change the layout as necessary.
We also have a decent dining set, with cushions that is adjustable to seat 10 people if need be. Al fresco dining all the way!
Our artificial grass is lush! No mud, no dirt, no weeds, no mowing! The kids roll around on it and picnic on it… best investment.
Our pots, plants and flowers have come on wonderfully. The kids enjoyed getting involved planting (as did my friend Kath who seems to be claiming all the glory for their beauty and success) and I’ve found it really therapeutic looking after them… call me Charlie Dimmock. In fact. Don’t. Damien’s surprised they are still alive of course!
We’ve had lighting installed allowing us to enjoy the garden right into the night if we’re ever hosting or the kids are having a late one. It looks pretty impressive in the dark, my Nanna would have said “it looks like bloody Blackpool illuminations out here!?” All LED though so there won’t be a power cut across Woolston every time we switch them on.
I chose a funky grey and yellow awning and love it! Not only does it protect George from the sun while he’s particularly sensitive during chemotherapy treatment, but it’s also waterproof so we’ve been able to sit out in the rain too. Very handy since it rains about 80% of the time. It’s like an extension to the house while it’s mild enough to leave the patio doors open at the moment.
We bought a few extras which have helped complete our new living space – a basketball hoop, chalkboard, swing ball (a nostalgic addition!), birdy feeders and we had a tap fitted outside which has mainly been used for water fights!
We’ve had a day at home today while George didn’t have much energy. It’s likely I would have made do with the old garden and encouraged George outside but wouldn’t have lasted long. Instead, we had a nosey out of the gate when the big tractor came to cut the grass, George has watered the plants with the hose while I enjoyed a cup of tea on the outside sofa, then we read stories out there too. Oliver came home from school and played basketball, then there was a mass “Power Rangers” brawl out on the grass when Daddy got home from work. We all had tea Al Fresco – sausage,
mash and veg, not quite Nigella yet…
All these positive, wonderful times are possible now, whenever we want. We’re excited to enjoy the rest of summer with friends who visit and just be able to chill on the tough days.
From the bottom of my heart thank you for helping bring a smile to our whole family’s faces, this garden has literally changed our lives for the better through the biggest challenge we’ve ever faced.
It’s been another roller coaster of a week – one minute we’re rolling round laughing, toy fighting and forgetting it all for a moment, the next we’re back to worrying, juggling the kids and rushing to hospital.
The football has been on and I’ve enjoyed watching Daddy struggling to watch a complete match with the kids knocking about. It’s been a comedy sketch of climbing all over him or digging out the noisiest toys known to man to blast out just when you’ve settled down.
Thursday was the first day of a different kind of chemo called Cyclophosphamide that George has for four consecutive days. He had it for four days last week following his 5 and a half hour one. We’ve felt really relieved this week for him to not really suffer many side effects as I’d really built myself up and was fearing watching him suffer with those ulcers again.
Instead George was so well that he even managed a few stints at Playdays this week. As you can see by the smile on his face, he had a great time and we’re glad he’s still getting to see his friends during the final weeks of preschool before, dare I say it, big school in September!? The couple of hours gave me some vital time to do a bit of shopping for his birthday this weekend and a I even managed to get out for lunch with my friend Paula for a much needed de-stress.
On Thursday I’d starting feeling anxious about the nurse coming to access “Barry” the port with the gripper to administer his chemotherapy. One of the main problems we have, as I’ve said before, is ripping off the bloody adhesive tape that’s used to hold the numbing cream on for an hour. I changed it up though, Blue Peter style, with cling film and a very still child, we managed to apply the cream and leave it there under the cling film to take effect. Ta-dah! no painful peeling of tape an hour later and a much calmer Georgie. He was sat there “King George” literally being fed grapes watching his favourite programs.
Our good friend Nic came to my rescue to help distract George and make him laugh while the nurse prepared everything. Even when the needle missed first time and he had to have it done again he did great, mainly because Nic was there clowning around and getting him back on track when he’d started to get upset.
Later in the day I did have to deal with an exorcist scene where George full on puked 360 degrees. I still can’t say I enjoyed cleaning the cottage cheese veg combo up even if I was satisfied it was at least on the laminate floor. He just got himself a wipe, cleaned his face and carried on playing, leaving me with tears streaming from wretching, having to clean it in 2 minute intervals so I could recover.
We also had a visit from Lynda of The Joshua Tree this week who regularly pops by to catch up with us and check I’m not rocking in the corner. It was good to talk about how we’re all doing emotionally, how George is doing and just having someone who understands exactly what you’re going through listen. Linda had very kindly brought some well-received gifts for all three children, of course it was Lego for George!
The Joshua Tree has been a great source of support for us so it’s been lovely to hear a few friends have chosen them as their charity to raise money for recently – I know Anthea is definitely one of them!
Strange how things happen, we’d been trying to persuade George to get cycling for ages and had pretty much given up for now, accepting his little are probably just too sore now. But I think with a combination of practising on a trike at nursery and pure defiance, here’s a picture of him bike riding to pick Harriet’s friend up the other day…. defiance because i’d said “you’re not going to be able to do it George” (Mother of the year!), so of course he had to prove me wrong. Yes that’s a man sized helmet for his huge Rooza-cranium.
I had the pleasure of meeting the teacher that George is going to have when he starts in Reception this September. I briefly popped in to the school office and ended up chatting to her about what to expect… the idea was to reassure her that she’s not going to be responsible for doing anything out of her remit, but just what to look out for. I told her about his diagnosis and how everything came about, how hard it has been and the kindness of others even right up to this day and and she was in bits bless her. I’m so glad we had that conversation though, it’s really filled me with confidence that we’re doing the right thing for him… she is such a lovely, caring woman, I don’t think I’d want anyone else!
My friends Andrea and Anthea visited last week too, forgot to say! Here they are listing every item from the Argos that George wants for his birthday… my soul is already destroyed from months of this! Thank God it’s tomorrow and lets hope he’s been listening when I’ve said “you know you’re not getting everything right?”.
This morning George’s temp had jumped up to 38.4 so I off I went just after 7am to A&E at Alder Hey. His temperature went up to 39.6 and his blood pressure and heart rate were elevated. After a load of messing about we managed to get up onto Daycare after 9am and George was kept in for observations and blood tests. If his neutrophil count is 0.5 or below he’s classes as ‘severely neutropenic’ and so would have to be admitted for 48 hours which obviously with a certain birthday looming we could really do without. George’s count is 0.7 so is borderline due to the chemotherapy he’s on… throughout the day his temp hasn’t dropped to within a normal range but after thorough assessment and plenty of pleading from George, Kev, his ANP, agreed for us to go home on Calpol until tomorrow at 7am.
I wish I could say he’s been back to his usual self but he’s not unfortunately. He’s complaining of pains in his legs, his eyes hurt, he looks like a beetroot and has a speckled rash. These are side effects of the chemo too so we’re just staying put at home for now. I did make a bit of a frantic call to Oncology a little earlier as his temperature is now hitting 40 and we were wondering at what point it’s too high to stay here. We’ve been told to just follow our instincts pretty much so we’re keeping an eye on his breathing and checking his hands and feet aren’t feeling cold – it’s going to be a long night!
You can bet your money we will be in Alder Hey tomorrow, he’s got through the night to get below 38 degrees! It’ll be a good story to tell though and more reason to drag out his celebrations.
Just a few more thanks for more lovely gestures from our friends – thank you for the box of Lego to the lady who is a friend of Laura Linley, I didn’t catch your name but George was so excited to build a big aeroplane! and thank you Rachel Groarke, your girls are so thoughtful to think of Georgie even when you’re on your own holiday! he loves his message from Bradley and Rory from Hafan Y Mor.
Tonight, I’ve been holding off writing George’s birthday card because I feel overwhelmed with emotion when trying to find the right words to say. I want him to know how proud we are of him for keeping strong, how much we love him and how much better his birthday will be each year from now onward. He’s had dealt with more crap than most adults have had in their entire life, yet he still bounces back smiling, resilient and gives us so much back. Seriously, I’m welling up just typing it.
Then I realise he won’t give a shiney shite when he realises he hasn’t received every item from page 1475 of Argos onwards…
So for now, good night, hoping for a decent night’s sleep and a boy feeling much better for some 4th birthday celebrations.
With Wednesday’s five and a half hour treatment out of the way, we were pleasantly surprised that George returned home acting like his usual self – cheeky and wanting to play outside. We’re still only a few days in from that treatment and know there’s still time that his counts can dip and he can get a temperature or any of the many other side effects. Any initial sickness hasn’t happened though, just a tummy ache on Wednesday night – maybe the anti-sickness drugs did the trick?
Here is George and Harriet after George’s full day in hospital having chemotherapy on Wednesday this week.
Daddy did the hospital run that day and I stayed home with Oliver and Harriet to try to keep a bit of normality. George was very brave having “Barry” accessed and just cracked on with his drip in all day. He also bumped into Erin and her Daddy whilst in hospital and caught up on the latest fundraising to help get Erin to America for her life saving treatment to prepare her for a bone marrow transplant. You may remember I posted early on when I started this blog about a family we met at The Joshua Tree when George was first diagnosed, that I’d felt relieved Damien had met another Dad he could chat to – sadly Erin has since relapsed and the family just found out their only hope for their little girl is to receive Car T Cell therapy to get her into a position to receive a bone marrow transplant. On Wednesday I think the fundraising had only really just got into the swing of things and the £100,000 they needed seemed so far away.
Today, by the power of social media and the generosity of so many people, the target has been smashed and they are at almost £116,000. I am elated. For Erin, for her Mummy and Daddy, for all the people that love them and for all the people who donated – every one who donated is a hero in themselves.
Some people disagree with how much I put on my blog and social media, how much I share my thoughts and feelings about what our family are going through. Without social media right now the outlook for Erin and children alike would not be such a positive one – this is because her family have put out there what is happening to their child, how they feel and opened up there hearts to anyone would listen. I guarantee you would do the same if you had to walk in their shoes. If anyone would like to add to their fund, as Erin’s trip to America for treatment is not likely to just be a one off, you can donate here.
George returned from hospital on Wednesday with a whole bag of goodies for the Macmillan nurses when they come to give him his daily chemo in “Barry” at home for the next four days. George is also back on his mercaptopurine medicine (the one he calls his chocolate medicine) which is his chemotherapy we administer now for the next three years. He also has anti-sickness and morphine to counter act the other side effects of cancer treatment.
We’ve been fortune enough over the past few days to enjoy some sun and high temperatures in the North West! Our beautiful garden has been made the most of by all of us and the last few jobs are almost there. The awning has been out in all it’s grey and yellow glory, protecting Georgie from the sun and protecting all of us from the odd rain shower – come on, it is Warrington after all.
This morning I noticed the wee George had in his potty looked a funny colour. We’d been told that bladder damage is a side effect of the Cyclophosphamide drug he’d had so had to take him straight in if there were any changes to his urine.
And so the comedy sketch of getting three reluctant kids dressed, a suitcase packed in case we were kept in and all out of the door as fast as possible began. Luckily our volunteer from Home Start was here when I made the phone call to Alder Hey which meant she could at least prevent the kids from Homer-Simpson-strangling each other while I tried to get myself ready.
Olly and Imy’s Mummy, Nic, to the rescue again, where I dumped Oliver and Harriet on the door step and sped off with George. I did have a pang in my chest en route and was a little upset for the older two children but was also thinking about these side effects for George and whether might lead to something serious. However the kids had been made up with getting a play day with their friends and George had was happy to be going to hospital!?.
After having his obs taken, his pee tested and being checked over by Kev, the ANP who always makes George giggle, he was prescribed some antibiotics for a UTI (water infection) and had bloods taken to check if he needs a transfusion. You can see him there in a photo casually perusing the Argos catalogue he likes to carry about with him!
We were allowed home by mid afternoon, though almost needed a snorkel or oars or something…. the storm that occurring in Liverpool was of apocalyptic measure. The good old sperm whale (C4 Picasso) saw us through though and we made it back to collect the children and stayed to have a quick brew…. a quick brew that lasted about 4 hours that is when our friend also joined with her two!
Why say it in three words when you can say it 3000 though? that’s my motto!
This week has been a tough old week, the toughest so far in terms of George’s mood and well being. It’s on a different level to the initial shock of your child being diagnosed with leukaemia. No, this is a different kind of heart break, the kind you might experience when your child is feverish and not themselves, and that 24 hour bug seems to be going on forever and all you want for them is to be themselves again. Only imagine they’re in so much pain they can’t talk, they can’t drink and you know they want a hug, but they keep pushing you away because they’re angry, they’re sad and you can’t take it away for them.
Then imagine that it’s not for 24 hours, you don’t know when it will end and you’re completely helpless. That’s the kind of thing we’re talking about this week. George has a temperature and mucositis, it’s causing ulcers and sores through his gastrointestinal tract from his mouth down to his bottom. It’s even been affecting his tear ducts so his eyes are sore too. Imagine those one or two ulcers you might have because you’re feeling a bit run down and times it by 100. That’s how my baby boy is feeling. He’s three and dealing with the probably a million times better than I ever would.
He did pick up a little for a day on Thursday this week and enjoyed having his little mate round to play, Seth, which I’m really glad he had the pleasure of doing. He was back for a couple of hours, chatting and playing normally. He misses his friends and he misses Playdays.
We’ve tried to appreciate the small ‘normal’ moments at home but have been back and to, to Alder Hey when I followed my gut out of sheer worry about him. What I do need to point out is that this is a side effect of George’s treatment, not something rarely seen and it’s something the hospital know how to deal with.
There are things I could Google all day long about what Mucositis can lead to, but i’m just listening to the other parents who’ve helped their children through it and of course the doctors at Alder Hey. “Barry” the port is in full swing and has currently got three or four extensions to it for fluids, IV antibiotics, paracetamol, saline and a PCA Pump for his morphine. There’s a little button we can press for an additional boost of morphine prior to George attempting to drink and following him coughing…
This isn’t really something i’d prepared myself for, if I’m honest I was just expecting vomiting and sleepiness but I realise now I was naive and this is the sh*t people are talking about when they say how hard it is.
We’ve had lots of reasons to smile this week around George’s feeling dog rough. I don’t think i’ve officially had to cook once due to all the little fairies who’ve delivered hot pots, bologneses, casseroles, bought us pizzas and invited us round for fajitas! We’ve not been short on visitors to keep me sane during the long days i’ve been at my wits end, nor offers of support while we’ve been at hospital. We even had a delivery from next door of bacon flavoured cupcakes just for George’s savoury tooth! He has also enjoyed his little lego gifts from friends who’ve made his day – he’s been re-building his sea-plane and caravan in hospital over the past few days 🙂
But never mind the smile on Georgie-Roo’s face, can you imagine mine when 10 bottles of wine arrived in the post this week!? Obviously i’m ready to neck the lot but have to bear in mind emergency dashes to hospital so we’ll gradually make our way through it bit by bit. I could do with a button on a PCA for that too but maybe that’d be frowned upon in certain circles :-/
The wine helps but the community nurse has been a massive saviour when i’ve felt like i’m tipping over the edge with what is normal and what is not. Plus support from other parents on some of the online groups for children in Oncology.
Oliver and Harriet have been amazing. It’s a word I over-use I know “amazing” but seriously… they fight most of the time and drive me bonkers, but when push comes to shove and i’m flapping about, Oliver suddenly steps up to help and Harriet will quietly retreat. I know this isn’t necessarily a positive, but i’m so proud of them… not because they’re the best at maths or brilliant at a particular sport but they’re so emotionally aware and mature in spite of everything.
So with our bank holiday weekend plans to add the finishing touches to our dream garden out of the window… Oliver and Harriet had a nice play with some of our neighbours children when all hell broke loose last night. Poor Damo’s one chance to let his hair down and go out to watch rugby was scuppered with George’s temp reaching 38 degrees and me having to abandon ship and rush him to hospital. The awning can wait until we actually need it when Georgie is home… and I can shop for any additional bits online when in hospital tomorrow with George if he’s sleeping.
Today, running on approximately 3 hours sleep and 1 round of toast, I’ve liaised with the electrician over lights in the garden and took Oliver and Harriet for a bike ride for treats from the shop. We managed to geg in on a barbecue at our good friends The Appletons on the way home. We’ve Facetimed Georgie and Daddy at hospital since we’ve got back and it was great to see George managing to swallow some noodles 🙂 he shown us his lego and now the kids are snuggled up watching X-Factor.
Totally appreciating my own bed for one night, can’t wait George is well enough to come home and we’re altogether again under one roof, hopefully that will be during the kids school holidays this week x