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.
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.
As you may have already gathered, if you follow me on instagram or had the pleasure of watching my Vlog last week, we decided to get a puppy. When I say we, I mean, Damien walked in from work to a lovely surprise a few weeks back!
I’ll be honest, I’m no expert when it comes to training a new puppy and the first night of her crying downstairs had me questioning whether I’d done the right thing. The turd trodden through the house, the new aroma lingering around and our pussy cat, Pip, now residing upstairs had also contributed to me questioning my sanity. Oh yeah, the three kids and regular hospital trips must also be considered.
Yes. I admit it. I know if it was anyone else, i’d be asking why!?
When George was diagnosed with leukaemia we were told new pets at that time were a no-no, as was travelling more than an hour’s radius away from Alder Hey Children’s Hospital, holidays, being around other children that could be carrying contagious illnesses and a whole host of other things that most other people take for granted.
Since then, we’ve watched in horror as our baby suffered the devastating side effects of cancer treatment. We’ve comforted Oliver as he questioned whether the medicine was going to work for his little brother and Harriet as she cried for me whilst I left her to be at George’s bedside.
These days however, we’re in a completely different place. George’s treatment has progressed well, he’s attending school and we’re now able to leave the area as long as we’ve let the hospital know – progress. I asked George’s consultant as he entered the maintenance stage of his cancer treatment whether a new pet was still off limits. The doctor felt that providing we’re practising good hygiene at home and the puppy is fully vaccinated then welcoming a new family member has more positives to offer than negatives for us.
The kids have always longed for a doggy… I decided the they deserved this, and the fact that I’m hanging around talking to myself on Vlogs, I took the them “just for a look” a few weeks ago at some puppies. Obviously we came home with a fur ball on Oliver’s knee and wondered what the hell do I do with it now?!
“Sugar” as Oliver named her, is a Cockapoo – a cross between a Cocker Spaniel and a Toy Poodle or a “bloody mongrel” as one lovely lady kindly pointed out to me on the park at the weekend. She doesn’t appear to be a curly-poo, more of a silky-poo and she’s definitely a clever-poo…. I’ve taken to adding poo on to everything Sugar orientated like a real-life mushy dog owner.
We chose this particular “breed” or “cross-breed” as Cockapoos are renowned for being great with children (v.important in this house!), are affectionate, not major barkers, are clever and don’t shed or drool a lot – perfect for a novice dog owner like me.
Oliver cried when I said we could have her. My son, who I’ve hardly seen cry since he was a baby, cried! Harriet speaks to Sugar in her own language and is completely besotted and George thinks he’s a dog too.
Sugar (poo) is perfectly timed for me as well… i’m not one to sit around watching Jezza or spending my life tidying, our house is a home, it’s clean, but I don’t want my gravestone to read “her house was really tidy”….. so now I have a new little friend to keep me company while the kids are in school and sometimes I’ll move things around in an attempt to do housework around puppy dates and walks. She gets me out and about in all weathers when I wouldn’t have bothered before, getting a bit of exercise all the way to the pub on a Friday afternoon. In all seriousness though, it’s refreshing getting out to blow the cobwebs away.
She’s already sorted her toileting out which is a major bonus with George around. With the added bonus of the artificial grass, we can wash everything away and disinfect too. She sleeps soundly at night, can sit, roll over and give her paw…. I think I’m a dog whisperer!
We’ve been to a Puppy Party – yes this exists! we’re going to training classes and we’ve met loads of new people (of course) out with their dogs on the park, it’s like a whole new social life. Sugar seems really happy and settled in the mad house, she’s strangely soft towards George and loves to learn new things. We’re looking forward to many happy memories and when I say she’s great company, I mean I’m still being watched on the toilet x
(I must note that our Consultant’s opinion on whether us as a family could take on a new pet is not a blanket decision for all oncology families. If your child is receiving cancer treatment, please speak with your child’s doctor regarding new pets as everyone’s story, situation and treatment is different).
George is starting school tomorrow…. i’ll just let that sink in.
I’ve been cracking on with life like I did when he was diagnosed with leukaemia and burying my head in the sand a little. Everything’s going to be ok, everything’s fine… I can tell you now, this is going to go one of two ways, i’m either going to be hard faced dropping him off or i’m going to be in bits, with no in between. Our only saving grace is the fact that he’s just doing an afternoon tomorrow so at least I won’t be in the morning drop off crowd waving him off with Oliver and Harriet. The rest of the week builds up to a full day then next week, boom, full time education!
This is more than “oh no my baby is leaving me!”, “he’s too young” nerves. It’s more like “my son is on chemotherapy AND starts school tomorrow” kind of thing… you know the feeling? No you probably don’t.
I’ve got every faith that his new teacher has got this, she is completely lovely and supportive, the same as the school has been since I had to make the phone call to say “Oliver and Harriet won’t be in today, their little brother has cancer, we’re taking them to Alder Hey” Now THAT was a shitty day.
No, tomorrow won’t be a shitty one, tomorrow is the next step, the beginning of George’s school life. It will be slightly different to the other children’s, in that he’s going to spend another 3 years with a suppressed immune system to prevent the “bad cells” coming back. He has daily chemotherapy, another weekly chemotherapy, blood tests and meetings with his consultant every fortnight and goes to theatre ever 12 weeks for a lumbar puncture and spinal chemotherapy. Let’s just say, there’ll be no 100% attendance certificate coming his way!
George will be more at risk of infection, and anything like that will mean more “sleepovers” at Alder Hey for IV antibiotics and monitoring too. He’s going to have to try to maintain a high level of hygiene (he’s 4!?), avoid contact sport because of Barry (his port) and his joints may get sore after physical activities. Catching anything contagious is unavoidable but we know the school have been on the ball with reminding parents to keep their children off if they’re ill, I mean, puking, the trots, chicken pox – what more could we ask.
Despite all this, we’re looking forward to him getting involved in and enjoying as much of school life as possible, particularly friendship. Whether he’s reading War and Peace by 6 years old, can do Pythagoras theorem or can sing like a canary… it’s not really what it’s all about in life really is it? I’m just glad he’s getting to go to bleedin’ school and has a chance to be happy like the rest of the kids from nursery (we miss you Playdays!).
Don’t get me wrong i’ll still post proud as punch photos on Facebook etc when he can draw round his hand at age 12…. that’s because i’m his mum. But whether he’s meeting “age related expectations” at the end of the school year or not is not about to change anything. We’ve met more than enough families whose children have been taken from them for us to appreciate all of our children just being here.
Since George was a baby and throughout his cancer treatment he’s still always had a dummy (dody we call it) for bed time and when he needed soothing. He’d always had it, along with his precious scarf comforter. It was particularly necessary when going through the chemo, needles, anaesthetic and when he has been in pain.
I’d been militant when Oliver and Harriet had dodies when they were little, fretting about their teeth, fretting them being “too big”, or being judged so theirs were banished at the earliest opportunity. As you can imagine, I hadn’t really give two hoots about the shape of George’s teeth given at one point I worried that cancer might beat him… I certainly did not give a rat’s ass what other people might think. Like I’ve said before, one of the positive things this awful diagnosis has brought with it, is a whole new perspective… and it’s liberating.
But! actual magical things happened at our house this week… with big boy’s school fast approaching George said he wanted to give his dodies to the baby fairies. A little door appeared one night in his bedroom and he left his dodies sprinkled with fairy dust outside. In the morning a fire boat toy had been left in return, a fire boat that George had always wanted! How did they know? So George, along with starting primary school has also given away his dodies and has only mentioned them since to tell the story about the fairy door in his bedroom. The door is still there because the tooth fairy is going to need to get in one day.
So we’ve ironed three sets of uniform, and when I say we, I mean Damien has! well…. I went out buying it all! we’ve tried everything on, got water bottles and PE kits, lunch bags, new haircuts (nearly there George!) and it’ll be baths and an early night tonight.
On a final note, George has asked nearly every day can he go to school yet. He is totally not arsed!
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.
What a blinder of a week… to say it’s been refreshing is understatement following our week in hospital. George was allowed home on Thursday just gone as he was able to eat a little more, drink and his temperature hadn’t crept up. He has gradually become more energetic, his appetite is well and truly back and he’s functioning like a normal three year old (apart from walking and moving like a little old man). It’s been so heart warming and we’ve appreciated every single minute of it.
The garden is just about finished… there’s just some work where the BBQ is going to be that needs finishing, there are some lights to go in and we need to attach a few more of the kid’s things to walls etc. We’ve had a lovely few days in it since the weather has been glorious and have had the awning out too to protect George from the sun while his skin is more sensitive on chemotherapy.
I managed to take Oliver and Harriet swimming towards the back end of the week last week, we had lunch out and they’ve played out in the sunshine with friends. Oliver even had a sleepover at his mates on Friday night, much to his delight.
George is really enjoying pretending to be a fireman with the garden hose – this is a novelty as we never used to have an outside tap. He’s given the flowers a “drink of water” at least twice a day, luckily they’ve needed it!
We’ve had Finly from next door round for a play and our friends came round for a sneaky peak and a glass of wine or two with their children on Saturday night. It was great to get out there with somewhere to sit and somewhere safe and clean for the kids to play.
Sunday we had more relaxing in the garden and then a BBQ at our neighbours. George had a ball playing with his friend Casey.
Harriet and her friend Kerry have decided they wanted to do something for George and for little girls suffering from the effects of chemotherapy by going for the chop and donating their hair to The Little Princess Trust. Myself and Kerry’s mummy Zoe are very proud of the girls for such a selfless act at a young age. If you’d like to support them you can do via this link. We’ve actually had a few more recruits from the children’s school now hoping join in the big chop! Thank you for being so thoughtful too Grace and Olivia (Wilson) – There will be another post to follow on the big day for all of the girls xx
We’ve been over to Alder Hey this morning for his bloods to be taken to see how we’re looking for his treatment continuing this week. We had everything crossed as we didn’t want it delayed and further and just wanted him to be well enough, he seemed it on the outside anyway!
So at 4pm we got the call saying everything great for treatment to continue, his neutrophils are 4.1 up from 0.4 which is a great recovery (that’s his white blood cells that fight infection) and his platelets are over 600.. they are his clotting cells and the lady on the phone said he has so much he could share some out!
We’re good to go, this Wednesday he’ll head in for 10am for his longest period on a drip for treatment so far – five and a half hours of chemotherapy and fluids. We’re anticipating side-effects, I just hope that whatever they are, they’re not as painful as last weeks.
Following this treatment he’ll have a nurse coming to us at home for 4 consecutive days a week to administer more treatment through “Barry”.
Feeling a bit apprehensive for what lies ahead but glad this week is going ahead now, even if the side effects are potentially going to clash with his birthday next week 🙁 we’ll see though, he might surprise us.
George is starting to come through his very sore ulcerated mouth and throat… he’s much better today compared to the last few days. I’ll blog more about how it’s been over the weekend, just wanted everyone to see he’s ‘ok’ and dosed up on pain relief at home x
Do you know one of those morning when you think, have I got time to wash and dry my hair? nah! it’ll be alright until later. Well that’s the day you can guarantee we’ll be heading to hospital.
George seemed a little sleepier than usual on Wednesday and by the time it got to school-pick-up o’clock he hit 38 degrees which means emergency dash to hospital. A quick phone call to our friend Nic, and I knew the kids were sorted for someone to collect them while I figured out what was going to happen next.
This time heading down the M62, I was having to make calls (hands free!) to ensure everyone else was sorted. The builders are mid-job on the garden and needed a bit of directing, I needed to cancel Oliver’s tutor (he’s preparing for an entrance exam…another story) and of course I was trying to get hold of Damo!
We arrived at Oncology Day Care and George was checked over by Debbie, weighed, blood pressure checked and pulse etc 🙂 he had a temperature and needed Barry the port accessing so that they could take blood for culturing and give him IV antibiotics if need be. In my haste leaving the house I had completely forgotten to prepare “Barry” with numbing cream, which takes an hour to take effect 🙁
I started stressing about it knowing it what it meant for George having to have the port accessed immediately. Rach, our Clic Sargeant social worker, came over just the right moment. She reminded me how well I’d done getting to hospital, remembering everything else, that we are in the right place now and not to second guess how George was going to react.
Inserting the line to the port didn’t go down too well with George and he screamed and cried while the nurse got on with it. Debbie stayed with us to help hold him down thank goodness… she’s a bit of a comfort for me too as she will just say it as it is and keeps focused while I’m flapping and trying to reassure George.
Luckily George’s mood soon lifted when the bravery box came out and he chose himself a little steam roller toy. We had to wait then to find out whether he was neutropenic (when you have a low neutrophil count, which is a kind of white blood cell that fights infection). We know there was a chance he’d be neutropenic as he’s on his intense chemotherapy now which really knocks his counts down. Normal counts are between 1.5 and 8.0 and George was 0.3 so were admitted for 48 hours. Due to George having a snotty nose and bad cough too he’s had to be put into isolation too.
Once he had collected his things from home, Daddy arrived to take over for the night shift. I headed back to collect Oliver and Harriet from their Daddy and take them home. After a cuddle and once they were tucked up in bed, I grabbed myself some tea which consisted of a bag of salt and vinegar Hula Hoops and a glass of rose.
Our good friend Paula took Oliver and Harriet to school the next morning and heading down the motorway again I started to feel a bit emotional again. That feeling came back that I had when he was first diagnosed. When we first found out it was Leukaemia, we were back and to taking over from each other Damien and I and although I know this time it’s nothing sinister, it’s hard to shake off that feeling when he’s staying in. Or worse, worrying he’s relapsing.
Being in isolation wasn’t as lonely an experience as I first expected once I was back to taking over, yesterday we had a surprise visit from our friend Si 🙂 he happened to be making a delivery to the Oncology department at Alder Hey so came in to see us… he even brought Mummy a cup of tea which was much appreciated.
We’ve had Jo the play-worker come in to bring Georgie some paints and pictures. We’ve had Neil and Alan the health care assistants bob in for a chat and to see how George is, two of the pharmacist girls saw us and came in saying “George Rooza? what are you doing in here!!?”, the chef came for a chat and knew what George wanted to eat before he even said it. Pip, another Play Worker who George loves, stopped by to see George and ask if he wanted anything along with a volunteer. So it was far from quiet with George’s nurse Laura checking on him too.
We were lucky that George’s temperature stayed down. He was on 4 hourly observations and 6 hourly IV antibiotics plus an hour’s chemotherapy and his steroids started again – the hunger monster already seems to be making an appearance but at the same time his mouth is starting to feel sore from the chemo!
There was no Hula Hoops and wine last night for me as I dashed back home to pick the kids up and got sorted for Harriet’s birthday party – yes, you read correctly. Thank you to Clare for shopping for half the stuff I needed whilst we were in hospital!
Last night was hard. Harriet’s birthday party was a success and luckily her Daddy took her back to ours while I drove back to swap over with Damo for the night shift and let Oliver give George a cuddle.
George wasn’t in a great place and cried a lot last night. I had to wake him up to give him his steroids which didnt go well, not only did he spit half of it back at me he wailed that he wanted to go home which broke my heart. He was unsettled all night and his 6 hourly IV antibiotics weren’t falling in sync with his 4 hourly observations at all. This meant it was every couple of hours the nurses were back in checking his temperature and blood pressure or rigging “Barry” up to the beeping machine. Every time he was disturbed he was upset again, asking for Daddy and home and I was up trying to comfort him.
So this morning we were both feeling very tired and grumpy with each other, George had also just been been pumped with chemotherapy so has more of an excuse for a bad mood than me. It’s just hard coping with the upsets when you’re knackered yourself and now it seems the hair is going and it’s everywhere! in his mouth, his eyes, food, the lot. It doesn’t even matter in the scheme of things.
The doctors came in and told us the George has Rhinovirus and Enterovirus which are variants of a common cold, so satisfied they knew what was causing his temperature, allowed us to go home after his next dose of steroids and once some more blood was taken. George also needed his gripper removed from Barry.
It felt like a lifetime waiting for the discharge papers and for the nurse to return with George constantly crying… luckily Rach, the Clic Sargeant social worker bobbed in again to see if we were ok. She ran and picked George up a little gift and a book to help cheer him up.
After an embarrassing “where’s the car gone? oh there it is 5 floors below!” moment with Jo, the playworker who’d helped me out, off home we went, feeling relieved and ready for a lie down on our own sofa. About half way home it dawned on me I had no door key to our house and Damien was at work in Manchester 🙁 🙁 our neighbour who has he spare said she was out but back in half an hour. So I stopped off for some lunch then pulled up on our drive feeling sorry for myself while George slept.
Once in George had predictably slept enough for now and was awake but groggy so any chance of a Nanna nap was out of the question. He was relentless and nothing seemed to satisfy him and this has pretty much gone on for the rest of the day. I tried to shut my eyes during an episode of Mr Bean when it dawned on me that I hadn’t come home with any steroids from the hospital and he was meant to take it twice a day for a week!
After our visit from our friend Si yesterday, he’d actually text again to say he was around, unaware that we’d now left. Luckily I was able to organise with the hospital for him to collect George’s drugs. What a massive weight lifted and help as I think another trip to Alder Hey would have tipped me over the edge.
Talking of being tipped over the edge, I chose my moment to have a full on cry in the middle of the school playground today. I’d kept it together all day whilst on my own but I’d pushed myself to pick Oliver and Harriet up, after worrying I haven’t been around for them enough. As soon as my friends asked if I was ok or offered a hug that was it, I’d gone.
Kath came back to ours whilst I was a bit broken, and I walked round like a zombie trying to make George happy without success whilst the other children just got on with playing. He wanted to go to the park with the other kids, so we took him, but he cried for his scooter. So Kath went back for the scooter but then wanted a football instead… we got the ball, he wanted to go on the slide, we let him on the slide, he cried to go home. It was relentless and exhausting.
A little later Karen arrived and sorted some tea out for the kids while I comforted George. He was now crying that his mouth hurt and his bottom hurt. I dosed him up on morphine as he appears to have some mouth ulcers which are a side effect of his treatment…. so is his “stinging bum” as he calls it as the chemo strips away any fast reproducing cells in those places 🙁 So he’s crying about things I can’t do anything about and I’ve got Harriet opening birthday presents and i’ve not even had chance to look at them with her. What do you do?
Damien is since home from work and has been taking over when George allows him, the morphine has kicked in and I’ve had a moment of solitude driving to pick up a take away. Small things.
I feel another long night ahead but at least there are more hands on deck and we’re in the comfort of home. Although the hospital offers our baby the protection he needs in these weaker moments, when you’re in, there’s always stark reminder of children suffering so much more…. and parents too, you can see it and you can hear it. We were only in for 2 nights and I’m a mess, we’ve got friends who’ve been in for weeks and some for months, it feels wrong to complain!
Just want to shout out and thank the stranger in the lift yesterday who hugged me after a 30 second conversation about our children who were staying in Alder Hey. Also to Leanne, who is another Mummy on oncology whose daughter Leah was diagnosed a few weeks before George, our chats over the past few days have meant a lot.
Also thank you to our friends for popping in to see us or offering to at least, those who’ve helped and text and kept us afloat by just being there for Oliver and Harriet. We couldn’t get through this without you x
We’ve got more lovely friends raising money for George and for charities that have supported us this weekend. Good luck Haynesy, one of Damo’s best mates in Norwich who is doing a Biathlon – you can read more about his fundraising here. Also to my little sister Shannon and my friends Nikki and Andrea who will be all taking part in the Manchester 10k on Sunday – I hope to be able to get there to cheer you on!
Here in Warrington, there’s an ‘Around the World in 80 Traders‘ event going on tomorrow where Jenerics will have stand supporting George’s fight against leukaemia… he is a very lucky boy to have so many people who love him 🙂