Just a quick one tonight to let everyone know that last Wednesday’s hospital trip was okay. The blood counts that were concerning us have now really picked up, but to the point that they’re too high so the chemo has been increased hopefully just enough to get the counts to the ideal point.
George bowled us over with his courage and bravery from being nil by mouth, having “Barry” accessed with the gripper to going under general anaesthetic and coming round again without a tear. I’ve got a Vlog to upload of that day which I’ll put up later in the week.
He had his numbing cream on before we left home and wasn’t allowed anything to eat while Oliver and Harriet sat eating their breakfasts. Daddy took George to hospital while I gave Sugar and quick sprint around the park and took Oliver and Harriet to school. I must be honest, I had another wobble on the way to hospital as there was a bloody ambulance on the M62 blue lighting all the way. It took me back to 5th January this year when I had to follow the ambulance with my own son in it to Alder Hey the day before he was diagnosed.
I made it to the hospital just in time for George going into his consultant. It was a relief to hear that his neutrophil count had picked up, they were just higher than the doctor would like this time so the chemo has been increased now to bring them down again. The doctor was a little concerned at George’s weight loss as he’s lost 1.5kg in two weeks, that’s quite a lot for a little person. It’s been put down to the fact that he’s started school and is much more active. I have had a chat with his teacher since to double check he is actually eating his lunch which she assures me he is, he’s a great little eater. The concern will be if he’s lost weight again, although I’m not sure what it means for him if he has… just another waiting game.
So following the clinic meeting with the consultant, we went through the motions that we’re all now prepared for. Karyn, the lovely nurse who has never missed “Barry” with the gripper was on, so that was really straight forward and relaxed. We were called to the theatre waiting room where George watched Toy Story on the TV then blew me a kiss goodbye, and off he went for his sleep and lumbar puncture for spinal chemotherapy. He has this spinal chemo because the oral chemotherapy that we give him at home doesn’t reach the spinal cord and fluid around the brain. Leukaemia cells can travel into the fluid that surrounds the spine and brain, so during the maintenance phase, he has to have this procedure via lumbar puncture every 12 weeks.
After his theatre trip, he was wheeled back up to the ward, staying lay flat as directed for about an hour. He was absolutely ravenous so ate half of my butties before his own picnic arrived along with his special request of chocolate ice cream! The kitchen really look after them.
George had been really looking forward to going to theatre because A. he got to have a sleep and B. he gets a present for being brave. Mummy hadn’t been very organised so he got to choose which Transformer he wanted from his bed on my phone that day. Thank you Amazon Prime, Optimus Prime arrived the next day 🙂
So all is good in the hood at the moment, we’re back at Alder Hey again on 5th October all being well, so we’d better get fattening George up in the meantime!
Georgie was straight back to school on Thursday and on Friday I had another little emotional moment, but for a lovely reason, he came out of school with a Character Award for Courage… for joining in with a dance lesson even though he wasn’t sure he’d like it! Bless him, cracks me up.
Just another quick THANK YOU to our lovely neighbour Laura (not Ian, he can’t be arsed reading the blog..I’ll Vlog another time!), for having Sugar Poo over for doggy play dates with Teddy their sausage dog while we’re at Alder Hey. You’re a star! x
Last week George had a blood test to check whether he was good to move into maintenance and we got the call on the same day to confirm all was well.
On Thursday we had an appointment with one of the Consultant Haematologists, Dr Keenan. He checked George over as he has a little cough and some strange loss of pigment on his skin in patches on his tummy – we’re keeping an eye on this as it’s not something he’s come across before. The main reason for the appointment was to officially move George into the “Maintenance” phase of his treatment.
Maintenance will run in cycles, but essentially is the remainder of the treatment for Acute Lymphoblastic Leukaemia – it’s working on preventing the return of the cancer cells. Some of the chemotherapy that George will receive during this phase will be administered orally by us at home. He’ll still need to go to hospital every fortnight to have blood tests and be seen by a doctor, the doctor can then prescribe the appropriate amount of chemo for the following fortnight and so on.
It doesn’t reach the nuts!
The chemotherapy George has at home (Mercaptopurine…. or chocolate medicine as he calls it!) does not reach his his nuts! So the consultant had to give me a demo on checking his boys bits (on George this is btw!!) which we have to do on a weekly basis… any slight change in size, lumps, bumps or tenderness and we have to take him straight back to hospital. Relapse in boys testes is more common than anywhere else.
Nor does it reach the brain!
The chocolate chemo medicine also doesn’t reach the brain so George will still be going to theatre every three months for the next three years to have intrathecal chemotherapy. This is chemotherapy into his spinal cord via lumbar puncture so that it can treat the central nervous system where the other medicines don’t reach. He’s been having this frequently up until the “break” he had, if you remember reading about him not being allowed to sit up after theatre earlier on when things were quite traumatic.
So we’re feeling pretty confident that everything is covered… a small number of leukaemia cells can survive everything that has been thrown at it up until now but this next few years will hopefully be wiping them out completely. Relapse can happen at any point, but it is more likely to occur the year after the end of treatment – so 2019-2020!? we’ll never be free of the fear that it can return and will be living with the uncertainty for many years.
Relapse doesn’t bear thinking about much further, we’re happy to be where we are right now. The key word in the last paragraph for us is living – living life to the full because you don’t know what’s around the corner. Cliche I know but it’s never meant more.
I asked Dr Keenan what the phase of treatment means for us a family now, and he basically told us go live our lives. There are certain precautions we need to take, but that he, and the rest of the doctors, will do their utmost to allow our little boy lead as “normal” a life as possible. I’m not usually a fan of “normal” but it’s sounding pretty good right now.
Barry, George’s port will still need a flush every month, we’ll still have theatre every few months, doctors appointments and blood tests fortnightly and will still be heading to Alder Hey with temperatures if George falls ill but this is what life is for us.
Maintenance Day 1 – LegoLand Windsor
So to kick the official first day of maintenance off on Friday, we took advantage of Oliver and Harriet being off school for Warrington Walking Day and visited LegoLand Windsor! you all know what a fan of Lego our Georgie is, so he was in his element.
We arrived at Legoland and as directed spoke to Customer Care who gave us 5 QueBot passes to allow us to fast track through every ride. It was fantastic… not only so that we could make the most of a good variety of rides for our all three of the kids but what a lovely touch by them? We knew this meant no standing around in queues with strangers where there’s the risk of George catching something contagious.
The kids were adamant they were going in the splash park regardless of it being pretty chilly when wet in the wind! It’s for times like these we’re glad we have Barry the port and not a wiggly tube on the outside.
George and Daddy went off for a little Lego shopping later which gave us a chance to hit the faster (and wetter!) rides. Oliver and Harriet loved it!
Day 2 – Family stay
We also had the pleasure of staying with family on the way there and back. Thank you to Aaron and Dee for putting us up and putting up with us 🙂 we were outnumbered by little legs and survived!
We even got to visit cousin Teddy’s little school fete which happened to have the local fire service present and a FIRE ENGINE!? could things get any better for Day 2 of Maintenance! George predictably went straight back into his shell but what a lovely guy the fire fighter was, he persevered showing George the jaws of life, buttons to turn the flashing lights on etc. and low and behold since we’ve been home he’s been chatting all about it.
Oliver and Harriet and their little cousin Teddy got stuck in at the fete too, meeting the local police community support officers, playing games and eating lollipops. We finished off our stay with a beautiful lunch on Saturday afternoon at a local village pub. The kids ran wild in the sun, ate well, played on the swings, threw themselves down hills, chased each other, laughed and well….. lived.
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.
Myself and Harriet got out for the day for some much needed girly-time on Saturday. We both had a lovely time and Harriet chose few little treats and spent some of her own pennies on stickers and paper.
We went into Warrington Town Centre to the “Around the World in 80 Traders” event to support Jeniricsand have a cheeky Chinese lunch – delish! We saw a familiar little smiling face on the stand on a banner – our Georgie. It was a shame the rain poured but it wouldn’t feel like home without the torrential downpours would it? Thank you so much to the Jenirics team for your support, you are an amazing family.
It was funny at the face painting lady, Harriet deciding what she’d like to be….a princess? a butterfly? a bunny rabbit? flowers with sparkles? No. A penguin. I’m not sure the lady gets many requests for penguins. Typical Harriet.
So painted as a penguin she rode the bucking bronco like you do. We enjoyed watching some outdoor theatre and had a look round town for a new dress….realising our freshly painted penguin probably shouldn’t be trying pretty dresses on, we started to head home.
I remembered that a friend of ours has just opened their new little art cafe near home so just had to stop off for a milkshake and a decent coffee. R’Teapot is a gorgeous little hideaway on Bruche Heath Gardens serving the best rocky road I have ever tasted!! i’m talking turkish delight and everything. It’s cosy and welcoming and we’re looking forward to spending more time there over the coming weeks with friends. Congratulations Nat and family for creating such a gem and following your dreams x
It was nice to get out away from home for some time my little girl, we both needed it.
Later on, Harriet and I “popped round” to one of our neighbours for a catch up and for Harriet to run amok with the kids. I did my usual when I start telling a story and leave the house hours later having not even reached the conclusion! Thank you for hosting Andrea and for the vino, the laughter was great medicine 🙂
On Sunday I went to watch my baby sister Shannon, and my lovely friend Nikki, take part in the Great Manchester Run. They were both raising funds for our family and for charities that have helped us since George’s leukaemia diagnosis in January. They both ran through the torrentials to an emotional finish where we were waiting for a big hug and then went for an obligatory cocktail in a nearby bar. They’ve inspired me to do the run next year… I better get training!
I felt like i’ve hardly been at home this weekend, hats off to Daddy for sorting all three kids yesterday while I had a day off. With being out and about and everything going on, I was shocked last night by the amount of hair George has now lost. He’s gone from “Hitler” to “undercut” to “Gollum” to “toupee in a side wind” in the space of 48 hours.
The hair loss doesn’t mean he is getting more sick or anything, in fact he’s got less of the awful disease now than when he had a full head of hair at diagnosis… I think it just constantly reminds me what he’s going through when I look at him, so it has bothered me more than I expected. The only thing that seems to be upsetting him about it is the fact that its in his mouth and eyes all the time. He’s feeling too rough to care what he looks like.
Today has been another emotional roller coaster – and it’s probably more me than Georgie. He hasn’t been constantly crying like Friday, but his mouth ulcers are worse and the steroids are in full effect so is very hungry all the time. He’s just not himself, he’s carried a mini sausage roll round with him all day that he was desperate to eat but just couldn’t chew 🙁 he’s been very quiet, lethargic and telling me his mouth is hurting. He’s been on morphine all day and I had to call the community nurse at lunch time to come out because I was worrying about his breathing. It seemed shallow and he’s got quiet a nasty cough, then I literally thought I had to call an ambulance during one of his coughing fits because he was going blue and seemed like he couldn’t breathe.
He cleared a big mucousy lump and got his breath back and the nurse came not long after. Luckily my friend Nic was here (delivering an order of sausages for the little man) and Laura had popped round too to see if could manage some noodles. The nurse did a thorough check, listened in, checked his pulse etc and felt his breathing was fine. Now I’m questioning my sanity and whether i’m overreacting!
The nurses have said they are going to start making regular visits to check on us and answer any of my questions that I’m currently having to save up until the next hospital visit. I had felt quite isolated being sent home with George initially, I mean on the medical front. We can’t take him into a GPs surgery with a load of sick people and Alder Hey, amazing as it is, is a long way away and a very busy place when you have a concern or question. Once George had started going back to preschool though and he wasn’t suffering too much, I felt ok. It’s now that we’re in the midst of the intense phase, we need the nurses here, they’re such lovely people too, I instantly relax when they’re around.
The lovely Clare dropped a spag bol off earlier which helped immensely, I haven’t had time to do a food shop and haven’t left George’s side all day to cook anything. So after a long day at work, Damo came home to a decent meal! I could’t pass it off as my own unfortunately as my trademark ‘burnt’ wasn’t one of the ingredients. Thanks again Clare x
We had a couple of nice moments when George managed to play with Lego today, he was also very happy to have a snuggle with Daddy when he got home. I managed to capture some of his smiles – he looks like his normal self with a cheeky grin 🙂
Hopefully we’ll get out to water some of our plants in the garden tomorrow, George loves doing that. The guys have been here today installing a garden tap and putting the new fence posts and panels in. It looks ace! Thursday the grass goes down and maybe at weekend we might get the canopy up. We’re really looking forward to getting out there to enjoy it.
Another few days done, we’re not in hospital this week (fingers crossed!) and are just taking each day as it comes. Hoping for a some more comfortable days for George x
George’s day at hospital was actually a lovely one, with his friend Pip spending lots of time with him. He particularly loved Zoomer the little Dinosaur – there’s something for his birthday list!
He had an afternoon playing and laughing and all went well with his treatment, he was super brave having Barry accessed for his medicine to “punch the bad cells!”. We didn’t even really need his entire suitcase but at least we were prepared this time!. The afternoon did drag on a little but luckily my good friend Nic was on hand to pick Oliver and Harriet up from school… huge thanks again lovely 🙂
We went to pick the kids up but decided since it was a beautiful night and the children were all happy, we’d sit out in the garden for a while. George loves Nic to bits and constantly asks to visit the Cairns/Furby household to play with Nic, not the children 🙂
Unfortunately the following morning George was complaining of pains in his neck, I called the Oncology Daycare at Alder Hey and they asked us to come straight in. So, suitcase in hand again, we were off down the M62. This time I was a bit more worried as it wasn’t something we’d experienced before and George was literally holding his neck crying all the way there and shouting hurry Mummy! All sorts was going through my mind as you can imagine…
We got there and Kev, the ANP, who is always fantastic with the kids, checked George over. He said he could see some blood and swelling in his ear and that he thinks it’s an ear infection. He prescribed antibiotics and was dosed up on morphine and we came back home again.
Over the weekend we’ve had the excitement of a skip arriving for the digging out of the back garden. George loves vehicles and machinery so he loved watching the action! The garden is really coming along now – the decking is done and is already much easier for George to access. The work for the artificial grass begins tomorrow plus the new fencing and gate arrives.
It was nice to see our friends Andrea, Olivia and Ray over the weekend and the older kids had a play out in the sunshine. George was very interested in this “Diggerland” place Andrea was telling him about – we may try and visit if we can find a quiet day!
We also had Kath and Lola come over to help us get some planters and pots filled. I visited all the local plant nurseries and bought a load of plants I have no idea what to do with! fingers crossed they just need soil and water! Harriet is desperate to grow her own vegetables so I’m going to try to incorporate a mini-greenhouse somewhere.
Yesterday Georgie developed a chesty cough and has become quite congested, his temperature had started rising, so I thought we would be heading back to hospital. He had a good morning today but was snoozey this afternoon – we’ve some Mummy cuddles and it hasn’t crept up further. Think i’ll be in his room with him though tonight as he’s definitely not himself and I find it difficult to sleep away from him when he’s more unwell than usual. I don’t know how we’ll ever go back to not checking on him all the time!
We’ve heard more sad news that another little lady from our Oncology ward passed yesterday, another family’s hearts broken. I’m aching for them, 4 years old. Good night Lacey Mae xxx
On Tuesday we headed into Alder Hey for George to have a blood test. This was to make sure his counts were high enough to get started on the new “Delayed Intensification” phase. We got a call later that day to confirm we needed to go in the following morning as planned as his counts were great.
Wednesday, Daddy took George into hospital first thing to get ready for theatre for spinal chemotherapy whilst I took Oliver and Harriet to school. I then met them there just as they came out of 3B Daycare. having had his gripper inserted into his port already, and was heading to the theatre waiting room. The nurses were very impressed with how calm George was as they put the needle into “Barry” – he is so unbelievably brave…
George was very excited to be able to ride the trike again however he had to be herded into a corner as it was quite busy in there this time and we don’t want to risk him catching any nasties.
He went into theatre with no fuss, with his usual lovely anaesthetist who was asking if she could have his Mummy’s autograph as she’d heard me on the radio! <cringe> Georgie gave me a kiss goodbye and went off to theatre smiling.
We grabbed a coffee whilst he was under anaesthetic and then headed back just in time to be called to collect him again. He came out and was happy still, staying lay flat asking for food and to watch TV as usual. After a while, Damo decided he was going to head back to work as all was well and once George has had his observations done for a an hour or two, we can usually go home.
Unfortunately and typically! once Daddy had left and George was able to sit up, he started to complain of bad headaches and was crying. This was new to us as he’d never experienced this before… he just kept lying back down saying he wanted to go home. Kev, the ANP who was on that day, immediately prescribed morphine for him. It took what felt like an eternity for the pharmacists to sort, when in reality it was probably no time at all. I was pacing around with him crying in my arms as he didn’t want to be on the bed any longer.
I was starting to stress as it was hot, he was in pain and I’d also realised George’s buggy was in the car and he’d wheeled in on his trunki. There was no way he was going to wheel back out and I now had all his meds, a trunky suitcase, my coat (it was stifling in there!), my bag and George to carry out.
Kev told us we weren’t going to be able to go home until George had stopped having headaches 🙁 a very disappointed Georgie was starting to get more distressed as was I. The headaches were due to the chemotherapy he’d had injected into his spinal cord which travels into his cerebral fluid.
I was giving him a “cuggle” on my knee as he then puked all over himself and me 🙁 this is a side effect of the anaesthetic. So he wasn’t having a good time of it all. I had sick down my leg and in my slip-on shoe. The pungent aroma of wotsits/fresh orange was radiating outwards from us and I was starting to wretch.
Luckily Mia’s mummy who was in the cubicle next to us grabbed us some paper towels while Debbie came and cleaned around us. It was grim and I can still smell it now. George fell asleep in my arms straight afterwards so I sat for a minute with him, then moved him onto the bed. One of the lovely playworkers came over and sat with George while I cleaned myself up as much as I could and even managed to run in my squelchy shoe to the car for the buggy.
It was a huge relief knowing I wasn’t going to struggle out of the place and Pip, another lovely playworker, also grabbed George some brand new minion PJs to change into 🙂
Damo then had to come back out of work (in Manchester) to pick Oliver and Harriet up from school as we weren’t going to make it back in time. My heart jumped when George started stirring and I was holding my breath waiting to see how he felt “please be ok, please be ok”, he sat up looking tiny with his dody in and said “it’s gone!? my head isn’t hurty!? it’s magical!”
It’s magical…. could he melt your heart any more. He literally threw his legs over the side of the bed and walked round to me for a hug. Then he picked up his swabs (swab sticks to test for MRSA etc) that we’d already done and walked over to the nurse who had been looking after him to hand them over.
I’ve no idea what he was saying, but he was talking to her as he handed them over, again he looked so small, the nurse crouched down to him and put her hand on his shoulder and shot a little smile my way… well that was me gone then, I was in bits. I’d managed to keep it together until then… I think it was relief.
So we went home. We had a class to get Oliver to and I needed to pick up Harriet’s birthday present and wrap everything. I slept well that night. Day 1 done…. only the remaining 8 weeks to go.
I’d like to say the following day was easier but it wasn’t. We were up early for Harriet’s birthday, she was a giddy kipper and I had loads to remember… sweeties for school and all that. Daddy went to work and George and I dropped the older kids off. I’d planned ahead with a spare set of clothes each in the trunki this time and also knew I’d take the buggy straight up with me so was feeling confident.
All was going well until about 15 minutes into the journey to Liverpool, just near the M57 where the motorway splits into three, at approximately 70mph with no sick bowl to hand, poor Georgie brought all his breakfast up. He cried, I tried to reassure him whilst panicking he’d choke and trying to not kill us by watching the road ahead. I had no idea where I could come off the motorway so decided we’d just plough on.
Of course, with no baby wipes in the car, there was not one parking space under cover so the car sat there in the blazing sun ALL DAY caked in puke. I stripped George on the car park, he cried, I wretched, I cried, he wretched. I had nothing to clean him up with (used all the wipes the day before!!) so he put his one clean outfit on, over the sick.
We were a sight for sore eyes when we walked in again. The nurse directed us to the shower where we could get cleaned up and gear ourselves up the drip and an hours worth of IV chemo. He carried on being sick for the time we were there and was prescribed anti-sickness drugs to take as well as his morphine.
He looked like crap and obviously felt like crap and it was sad sitting there knowing that it was this medicine causing him to feel this way. It’s a horrible feeling that I wish I could take away. But amongst all this, I received a really aptly timed picture from George’s preschool saying “Go George!” from all his little friends and teachers. That day they’d had a Superheroes and Princesses walk for George… I shown him the picture and cried a little.
Thank you everyone – not only for your walk, and the funds you’ve raised, but for that special moment in hospital when we both felt sad – you really lifted the mood.
The doctor decided to leave the gripper in “Barry” as he may have needed fluids the following day because of the vomiting. Damo needed to come out of work again to look after Georgie so that I was able to collect Harriet up from school on her birthday (and Oliver of course).
The car was as you would imagine when I got back to it. Thank you to the random stranger who gave me a packet of wipes from his boot… He copped for the whole story in the lift so probably felt obliged!
George was surprisingly much like his usual self once home, of course he always is once Daddy is around! We then had classes to get the kids to again then Pizza Hut for tea with Oliver and Harriet’s Daddy. Damo and Georgie stayed at home.
We had Friday off, when I had the pleasure of cleaning the dried vom out of the cracks of the car seat and also had our friends Dawn and Fin visiting during the day. George had a little play on the park for 20 mins, so that was a nice change. Harriet’s little friend Lola came to visit after school with her birthday present and with her mum Kath who I got to offload some of my stress to…
Yesterday, Saturday, George’s sickness had died down but he had to go back for an injection in his bum and have his gripper taken out. I honestly couldn’t face another trip to Alder Hey and see him crying, which I knew he would, so I stayed with Oliver and Harriet and Daddy took George. They had to wait around for an hour following the injection in case he became ill.
Meanwhile Oliver and Harriet enjoyed themselves at our friend’s house, the Appletons. Thank you for looking after us Mrs A. George came home and was in a good mood and told me all about it before carrying on with his day.
So next week here we go, Week 2 looks slightly more promising without a theatre trip, I’m going to pack the entire house when we go and make sure we have sick bowls within easy reach in the car. It’s a learning curve!
Here’s a little pic of him with his latest beads, he’s come so far and is still smiling 🙂
This week George has managed to attend Playdays (his preschool) with the care and support of the fantastic staff there.
During this gentler phase of his treatment he’s managed to attend Playdays more than we’d ever anticipated. He absolutely loves it, he loves his friends, the staff and we’re at the stage where we’re completely at ease with him attending (his health and energy levels permitting). This wasn’t something I ever thought would be possible when he was first diagnosed with Leukaemia?!
We wanted to allow George to have as normal a childhood as possible regardless of his leukaemia treatment and although he is at risk in this setting more so than being at home, the positives completely outweigh the negatives in our opinion. The positives being his about his mental health, developing social skills, maintaining his friendships and education preparing him for starting ‘big’ school in September (hopefully!).
We luckily already had a great relationship with the staff there and have also developed trust and even friendship with a lot of the parents, this is what has made all this possible for George. So I want to say a huge thank you to the parents of George’s friends at Playdays for being so understanding of our situation and considerate. I know some of you have been panicking yourselves.
Playdays have had the support from George’s Macmillan Nurse to ensure he is safe and the staff understand what they’re looking out for when he’s becoming symptomatic – I am always local and available for him at the drop of a hat too.
I think at first we were all a bit nervous of how it would work but things have gone really smoothly – Sharon and the girls recognised when George isn’t himself now and it’s not as scary as we all first thought when he is starting to go under. I think we’ve had a couple of occasions where we’ve had to dash to hospital with a temperature during the day or where he’s just needed to go home as he’s burnt off all his energy.
The last few days he’s been so stubborn and has literally begged to go even though I can see he’s shattered. Yesterday he was particularly quiet and I’d been wondering if he was coming down with something but I think he’s just not stopped on the days he’s been in preschool so is exhausted.
Today we’re having a quiet one and trying to allow Georgie to recharge his batteries ready for his St George’s Day toddle on Saturday at Walton Gardens. He’s pottered about a little but has spent most of the time lay down resting. He’s not eating quite as well as he was but it’s down to him having lots of ulcers in his mouth 🙁 this is common when you’re on chemotherapy, he doesn’t even complain about it. He’s also had a nosebleed today which can be a sign of low platelets (again caused by chemo), George took himself off to the toilet and come walking back in holding a tissue to his nose saying “im just having a little nosebleed” …it stopped quite quickly and we’ll keep an eye on it. He’s not phased by it one but.
These things aren’t so scary for us either now compared to how you feel about it in the early days of diagnosis. It just becomes part of life now we know what we’re looking for and George just accepts it as normal for him.
This event has been organised and sorted by my wonderful angels, Helen Dolce Lund and Sarah Poole who I can’t thank enough for making it happen. Thank you also to all the people who are baking cakes and volunteering to run the cake sales, the toddle registration and helping guide the kiddies along the course. I know my own Oliver and Harriet and some of their friends are going to be getting stuck in helping us out too 🙂
So after a nice quiet day with the little man himself today, we’re going to collect the rabble from school shortly and see how they’ve got on on the Queen’s Birthday whilst dressed in red, white and blue… that was fun trying to sort out this morning amongst the building work going on upstairs and George sleeping in until 8.30am! Then it’s drama class for Harriet tonight and we’d better think about baking something for Saturday.
I also know there’s a surprise at George’s preschool tomorrow that all the kids are going to love so hopefully he’ll be feeling up to it in the morning, even just for an hour or so.
Hope to see as many of you all on Saturday as possible, I will try my best to keep myself together xxx
Friday 4th March 2016 was Day 1 of George’s third phase of treatment. Mummy was very brave and even got a sticker herself for taking George to Alder Hey without Daddy!
The plan was that George was just having an injection of chemotherapy with a “butterfly injection” but unfortunately they felt George’s veins were too bruised from previous cannulas 🙁 This meant the magic cream was out in abundance covering all his available veins… It takes an hour to work – an hour of me sweating and fretting that is.
We were then seen by the doctor who checked George over and prescribed his chemotherapy and steroids for the next week. The conversation about a permanent line was had again to avoid all these additional needles and upset for George. The doctor said she is looking at getting him in in 2 weeks but we’ll see about that. There seems to be mixed opinions between the doctors as to when he should have his central line fitted (we need to work out the pros and cons to the different kinds of line he could have).
George was pretty put out whilst sorting the cannula, he was literally shakeing on my knee crying “is it nearly done yet!?” I can’t stand it either but know it’s necessary at this point. to be honest, it’s the ripping the plastic stuff off his skin that he’s crying about.
The IV team at Alder Hey did a marvellous job and got it in first time so easily, they’re amazing! As soon as it was in, he sat looking at it in his skin like a hard man… Saying its “all done now, can I have a sticker?” bless him. Mummy got a sticker too for being brave 🙂
Back out of the room he just got on with playing with toys and wasn’t phased when the nurses came to give him his chemotherapy. That was done whilst he played and chatted and then we were free to go!! At 3pm – 5 hours later!
I was too late to pick Oliver and Harriet up from school as it’s a half an hour drive at least from Liverpool to Warrington. Luckily we have the support lots of our local friends who jumped in and collected them – much to the kids’ excitement as it meant they got a quick play with their friends.