George is fine… great in fact! after a few scary days in Alder Hey, he was back to his old self, his MRI was clear and we’ve had Christmas at home. Just wanted to thank my wonderful little sister, Shannon, for coming to the rescue wrapping the last of the kids presents while we were in hospital. Thank you for also holding my hand around Tesco at stupid o’clock the night before Christmas Eve on your one day off over the whole festive period.
Thank you to our friends who as per usual picked me up, gave support, provided food and even offered Christmas dinner!
So a year to the day yesterday was the first day George was hospitalised in Warrington for low blood counts, a limp and fever. Little did we know how our world was about to never be the same again. A year on from the initial symptoms of leukaemia developing, we’re trying to live life to the fullest around George’s treatment and hospital admissions.
This time last week I was telling people how lucky we’ve been, apart from for scheduled visits and the odd temperature here and there, we’ve avoided staying over at Alder Hey and anything too concerning. Today we’re sat waiting to be called to theatre following an overnight stay for an unscheduled investigative lumbar puncture and MRI. Someone somewhere must have read my gloating Facebook posts of festive fun thought…woah… that’s enough Lis!
Yesterday morning George didn’t seem right when he got up, he was unsteady and said “the world is turning”. I put it down to him getting up out of bed too fast which had made him dizzy. He was holding the furniture in his bedroom to get to the bathroom and asked me to support him on the loo. Afterwards he was fine and took himself downstairs to Oliver and Harriet for breakfast. If I’m honest, I didnt think too much of it!
Damien had taken the day off for us to go out for breakfast, do some last minute Christmas shopping and finish the wrapping – a rare moment of just us two while the kids were in school. He took them off on the school run and I lazed around making the most of my rare lie-in. I just asked Damien to mention to George’s teachers that he’d had a dizzy spell.
George must have been in school for 15 minutes tops when the school office called to tell us he seems confused and is standing quite rigid. Damien rushed back for him while I gathered our stuff and called Oncology Daycare at Alder Hey. We were told to take him straight in and if there was any delay to call an ambulance.
The following few hours consisted of George being vacant, staring into the middle distance with dilated pupils even when a light was shone into them. He was weak down his left side and didn’t seem to understand us when we spoke to him. It probably lasted about 5 hours before he started to return to normal again. The nurses and staff were lovely and supportive and kept a close eye on him throughout – we also got to chat to lots of our oncology friends as they passed through for their treatment before Christmas.
I recalled that the day previous I’d had a call from school saying George had bumped his head but there was no mark and he wasn’t upset. Although George hadn’t been sick, the nurses considered him having delayed concussion and he was sent for for a CT scan. That wasn’t a very positive experience… the motion of the moving bed down the brightly lit corridors sent George’s eyes rolling all over the place and he became distressed. He cried and Mummy had to lie like Superwoman (literally!) on the bed holding his hands as he went through the CT machine.
By the afternoon, although George did look to be improving, the ANP looking after us said that they’d be happier if he stayed overnight to be monitored. The CT had been inconclusive and were told it was likely he’d have to go to theatre this morning for an investigative lumbar puncture. They will some spinal fluid under general to be tested for viruses and “nasties” i.e. cancer cells. He’d already had Barry accessed for bloods to be cultured, we knew his blood counts were good, he didnt have a temperature and he’d provided a urine sample. The hospital want an answer as to what has set him off in this way before they can relax.
Alder Hey has a real festive air about it at the moment, there are little Christmas trees everywhere, Santa and even some superhero characters knocking around bring smiles to the kids faces. There were a group of brothers who are boxers who came round the Oncology unit to see all the children too…they were so friendly, nothing phased them. Having been in a position where you’re scared to death of being around children with cancer, I think it’s an amazing thing to do coming here! I have friends and family that have still never stepped foot in the place yet there they are.
George had a restless night, I’m shattered as I kept having visions of him chucking himself out of the bed (even though there are rails on it). This morning he’s perky, chatty and reassuringly like himself. He’s nil by mouth ready for theatre and asking for food constantly – it’s currently nearly twelve and we’ve not been called yet. Daddy has returned from home and we’re being martyrs not eating for him either.
Karen, who was George’s nurse yesterday in Day Care, has already bobbed in to us in our room to see how he’s doing and was well impressed with how bright he is.
I had got into my head that if he was well this morning he probably wouldn’t go for the MRI. I’m conscious he’s going to freak out in it and he has to lie perfectly still in the really loud machine for 15 minutes. I’ve pushed for him to go under general anaesthetic whilst in there but there isn’t a slot available at the same time as his lumbar puncture when he’ll already be under. I just thought with him being seemingly well today they wouldn’t put him through it. However, it’s not the case, although he’s much more ‘with it’, he’s still slightly weak on one side and the doctor would prefer a more detailed image of his head and spine.
Fortunately for Oliver and Harriet, their Daddy has finished work for Christmas now so they’re getting some quality time with him while we’re back and to. Thank you to everyone who keeps messaging offering to have them! I really appreciate your kindness.
We also appreciate the offers of visits, dog walkers, shopping and present wrapping! but i’m keeping optimistic and am hoping these scans and tests are going to be clear and we’ll be sent on our way today. If not, I will most definitely be in touch.
So for now we’re just watching shite YouTube videos and building Lego with George, desperately hungry but not wanting to eat for George’s sake but also a little through anxiety at the same time. He’s saying he’ll be very brave for his MRI – he shouldn’t even have to know what one is, never mind be brave!
Feeling the need to remind myself what there is to be grateful for so here goes with today’s 5 glads!
Glad I finally got to meet a local family I’ve been speaking with online after their little one unfortunately became an oncology patient at Alder Hey recently. We had a couple of mutual friends who’d put us in touch and realised last night we are neighbours on Ward 3B. We chatted for hours last night, putting the world to rights.
I realise that without tough situations like what’s happening right now, I wouldn’t appreciate how many good friends and family members we have behind us.
Glad we got to bump into our friends Erin and Jack yesterday in Daycare and hear how well they’re doing and what lovely Christmases they have planned – something that months ago they couldn’t even think about.
Grateful for Alder Hey… and how there’s no messing about in this place, if there’s something a-brewing, there’s not waiting it out at home, they just keep going until they work out what it is or how they can try to fix it.
The nurses and support staff. They go out of their way to chat, help, support and even make us laugh during our stay.
I’ll keep visualising wrapping presents with a glass of Baileys later… hope every one is having a lovely build up to Christmas and not complaining too much about traffic, shopping, wrapping, and their kids – treasure it all folks! Update you all again soon x
ps. he’s just gone into theatre no problems with a member of theatre staff with a turkey on his head.. what more do you want?
Last week George officially moved on to a part of maintenance that allows us to spend less time at the hospital. We still have to visit just as much as he still needs his blood tests, but we don’t need to hang around as much for consultant appointments. Appointments with the doctor are still fortnightly but we now have every other appointment over the phone. We discuss George’s blood test results, how he’s been in himself and they then tell us what chemo dose to adjust to…. feels like a lot of responsibility but really, we’re writing on a document what the new dose is, and following that. I believe this isn’t something that’s available to every family (before any oncology friends/followers wonder what’s going on!), it depends on diagnosis, treatment and the stage your little one is at, I’m also not sure it’s something that’s offered at every hospital either.
George’s “good” cells are doing well at the moment so Dr Keenan increased his chemotherapy dose again. They need to be suppressed a little (with chemo) to make sure any leukaemia cells don’t have a chance to multiply.
Everything else is the same with treatment with regards to going to hospital when his temperature gets to 38 degrees, he still needs his port flushing monthly, has theatre every 12 weeks for spinal chemo and at the end of the day, if there’s anything we’re concerned about, we go back to fortnightly doctors assessments or drop everything and go if it’s serious!
It’s the end of the George’s first school term, Harriet’s first term in Year 4 and Oliver’s last ever school year in a primary school! Treatment and appointments have only really taken George out of school for a total of 2 days as we’ve managed to get him back in for a half day after his appointments. There’s been a week’s worth of a medicine he had to take as there was a suspected chicken pox outbreak but other than that, he’s not been sent home ONCE since starting in reception… he’s not had any temperatures during school time (we’ve had a couple of weekend visits) so we couldn’t have hoped for a better start to big school for Georgie-Roo.
Just as we managed to get into the swing of juggling hospital visits, homework, spellings, reading, after school clubs and classes etc for all three kids, we had the pleasure of George’s class dog-teddy, Doodle, coming home for the weekend. Those with kids who’ve experienced a class teddy before will understand what a joy that is! And for added pressure, we were the first to have Doodle this year so had to set the precedent…. you’re supposed to record/photograph your weekend’s adventures, people take him on their holidays, he’s been to Lapland in previous years for God’s sake! How were we going to make a weekend in pjs scratching our arses look like an educational adventure?!
Well…. we didn’t! but luckily for Doodle, he wasn’t due back in until the Wednesday and George was due at Alder Hey the same day. So off we went badgering every member of staff we dealt with in Oncology for a photo. Thank you to the lovely team for being so photogenic 🙂 you know you’ve made it in life when you feature in the Rooza blog 😉
It’s now half term and I won’t know what’s hit me with all three of the little loves around. We’ve got lots to celebrate as all three of them are doing great at school… it’s also D-Day for the final high school submission for Oliver, who we now know passed a grammar school entrance exam – you think choosing a primary school is a challenge? wait til you’re up to high school choices with over-subscription, catchments and feeder schools to deal with <insert arrrggghhhh face here>.
We’re kicking off half term, leaving Daddy and Sugar behind to visit our cousins in St Albans and hopefully will hit the zoo. Wish me luck for tomorrow on the M6 with a gang of kids whose current favourite pass time is worse than them all arguing! They sing out of tune HYMNS full pelt together!
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 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.
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!
Damien didn’t get his one night out in while after all last Friday night 🙁 unfortunately, George developed a temperature so Daddy had to rush back to look after Oliver and Harriet while I took him off to Alder Hey. Luckily, I’d just tucked into an absolute feast as our friends had come round for a few hours and Andrea had ordered a fat take away. So fuelled up for the night, off Georgie and I went for another sleep over.
All the days are merging into one with a lot of to-ing and fro-ing and juggling of the kids, all I can tell you is that it’s been harder than ever. No doubt about it, it’s been one of the biggest challenges I’ve ever faced, I don’t know about Damien (he’s in a relationship with me, I’m sure that’s not far off!).
It’s the staying strong while George is suffering – an afternoon here and a day there is all we’ve had to handle in the past of him being really unhappy so you sort of appreciate when he’s better and try to forget. This time it’s been a gradual decline at home where I’d started fretting, then he’s spiked a temp and we’ve come in for IV antibiotics and pain relief for mucositis…George had ulcers and blisters running from his mouth through his digestive system to his bottom. This is a side effect that 40% of people get who are receiving the same kind of chemo as George.
It was meant to be a relief for all of us coming in, pain relief for George and reassurance for us that he’s safe and things are being monitored. Unfortunately things got worse for about 3 days…
At about 1am the night before last, after not sleeping for days and having hours of George crying in pain, begging for food that he couldn’t get in his mouth and him shouting at me “why are you not my friend any more?” and “I just want to make you happy!!” I thought I was cracking up… I cried, I asked the nurse do they ever get parents just walking out saying they couldn’t do it any more? Obviously, I was going nowhere, I just felt consumed by helplessness and selfishly wanted it all to go away. I continued to try to comfort him and tell him Mummy will always be his friend and that I love him very much.
It was at that point that the staff changed his pain relief from Morphine to a Fentanyl.. I’m not sure what the difference is, it was just another option and we just wanted something to work for him. So he has a little button we press when we feel he needs a little more… at one point it was whenever he coughed, yawned, sneezed or tried to drink/eat. It turns out some of his irrational crazy shouting and crying was actually a side effect of the morphine as the constant crying settled slightly once he changed drugs.
On Sunday night one of my good friends offered to keep me company, though not being one who gives a sh*t about anything… she turned up in a MASSIVE Minion costume. I’d like to say it went down great, and it did with all the other kids, but not really with our George. Stepping into our room and doing a little dance was a step too far and we had to banish the Minion back to the corridor.
Andrea Davis you are an absolute legend! The comical part of the story that will be passed down generations to come is that once the Minion when to get changed back into their every day clothes, she twisted funny on her leg and said she felt a snap :-/ Next thing is, sweating she’s hopping out of a disabled toilet, with a load of little kids stood outside waiting for the ‘Minion’ saying “I’ve just seen a Minion in there!?” quite obviously in agony dragging herself back to our room where I was trying to comfort a petrified George!
Poor Andrea, she meant well and made a lot of poorly little children very happy posing for photos, but I’ll never forget that day. The nurses were great, gave her ice, pain relief and even a wheel chair! Andrea’s dad and brother had to come from Manchester to rescue her <inserts crying laughing face>
Yesterday Daddy was on duty and had to deal with the gripper attached to Barry falling out (if you don’t know who Barry is, you need to keep up). This meant freezing cold spray and pinning George down to insert a new one…. which missed…. so they had to do it again 🙁 poor Georgie and poor Daddy.
Meanwhile I managed another bike ride with Oliver and Harriet to a local beer garden for lunch with our friends Kath and Lola. It was nice to just be normal for a bit, watch the kids make up dances and play football etc, even if I was functioning on about 4 hours sleep. Last night I settled in early with a book and had a blood good night’s sleep.
George was up from 3am for Daddy but has made up for it today with a little nap. Dare I say he has a twinkle back in his eye too… he’s say here now trying to eat one bean at a time (at 10.30pm!). He’s actually been upright and wandering around a little so is definitely on the mend.
We also met little Theo from Warrington today who I may have mentioned on my FB Page or possibly personal page last week. His family and friends are desperately raising the money in order for him to have Proton Beam therapy in the USA. It’s an upsetting story where Theo was given 8 weeks to live before a surgeon offered to try removing it here at Alder Hey. The surgery was successful but he now needs treatment like George but due to the nature of the cancer, it isn’t as straight forward for him – his safest option of treatment isn’t even available here in the UK. You can read his story and/or donate if you want to here.
We spoke with the consultant this morning who has told us that George’s longer dose of chemo that was supposed to happen on Thursday has now been delayed until he is well enough to receive it. Hopefully that will just be next week as we don’t want this phase dragging on. George is still neutropenic (you should all be experts in this by now… low neutrophil count that fight the bad stuff) so it means he needs to stay temperature free and also not rely on the pain relief to drink before we go home. Doctor is hoping Thursday we’ll be released back into the wild/
I’m home with Oliver and Harriet tomorrow so better get my thinking cap on for trying to have a nice day with them while we can. Back here, thank God for Lego, my mad mate Andrea who’s been back for more tonight with Kurt to keep us company, the play workers as usual, the super supportive nurses and the very patient chef!
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
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 🙂