Clear for Two More Months

Leo's chest x-ray last week was clear and yet again, he was fantastic with going to the hospital, having his chest x-ray done and also with his oncologist! So we can breathe again for 2 more months when next time he's due a chest x-ray as well as his head MRI. This week we're back at the eye hospital for another check-up and to be honest, I am hoping that next year will bring fewer appointments as this year, there's been at least one appointment every month! But then at least they're only check-ups of late!

What A Fortnight!

Phew - glad to have got the last two weeks out of the way! All 3 of us have had the flu unfortunately - who knows if it was swine flu but the day we each got the tamiflu drgs to cover us, was the exact same day we were meant to have our swine flu immunisations! We're still going to have the injections at some point in case what we had wasn't flu of the swine variety!

We've had to rearrange Leo's bi-monthly check-up so we're off to see Leo's oncologist tomorrow now for chest x-rays and bloods. Fingers crossed and just about everything else too. I think that because we are busy with work and school now, the check-ups kind of sneak up on us and now they're here, we've had a few sleepless night and tonight will be no exception. At the moment Leo is fine and has no cancer, as far as we know, and yet the feelings that are highlighted around the time of the check-ups are that our whole world could be thrown into chaos by this time tomorrow...but then that doesn't bear thinking of really!

I've attached Leo's school photo here to make you smile - it certainly makes me smile through and through when I see this pic.

Tomorrow's another day...

School Disco...

Leo is taking to school and all the activities which go with it very well indeed...so much so that when it came to the school disco last Thursday, he couldn't go without getting dressed up 'all fancy' - his words! So what he meant by that is a bow tie.... of course!

On the health-front, the annual cough is back which makes Leo sound like he smokes 40 a day! Asked his GP for a referral to the homeopathic hospital here in Bristol as it worked last time before we moved to Spain where the dry weather cleared his chest up within weeks.

Another eye hospital appointment this week plus chest x-ray next week - in addition, a UK charity called KICT is helping us with nutritional support for Leo so we're having Leo's blood and urine tested this week too to get a measure of his entire immune system. Once we know all of this, plus get an entire picture of intolerences and any other allergies we don't know about, we'll be able to ensure we get Leo to a really healthy place and hopefully keep him there.

The thinking is that children with cancer and also ythose with allergies have something breaking down with their immune system - and the very fact that Leo's egg allergy got worse post-chemo, whereas 99% of cases disappear, is an indicator that there's something amiss with Leo's immune system.

Once we know where the weaknesses are, we can then tackle them head-on with fab green juices and supplements to get him well and thriving. He still has a really pale complexion which when next to other children, he does look positively ill! So we are going to work hard to get him right. If the cancer does come back, at least we know we've done everything we can to make his body as inhospitable to cancer as possible.

Fireworks

One Year Clear

One year to the day since Leo had his final chemotherapy and counting...I can hand on heart say I never thought we'd see this day for Leo so we're eternally grateful to have such a vivacious son who continues to thrive and enjoy life! Yippee!!

No more words needed - let's hope I am able to write Two Years Clear in 365 days' time...

Post-radiotherapy stuff

Saw the eye doctors yesterday - just a routine check-up. Leo hated it and although was good at doing the tests, got really angry when they needed to put the eye drops in so the doc could get a good look at the back of his eye. Once he'd calmed down, the good news is the doc got a good look at the optic nerve at the back of his right eye and it all looks good which is a relief. The only issue is that there is definitely damage to the cornea which is a direct result of the radiotherapy. It also calms our worries as to why he is squinting alot as the damage to his cornea makes this happen.

This answers the question as to why he is so light sensitive and struggles with sunshine or bright days. The school have been awesome in making sure he wears his sunglasses on bright days and Leo's good at this too. And now we know for sure that there's damage which will always be there, we know he'll always be in the system for his eyes alongside the other on-going tests and further treatment such a hormone treatment.

So Leo's going to be on a new regime now of eye treatment of eye ointments on a daily basis, day and night, so as to help the squint and which may reduce the light sensitivity - but it will never allow the damage to the cornea to heal as the radiotherapy causes irreversible damage. Small price to pay but a daily reminder of the cancer and its effects on Leo and the life he is leading.

Sorry to Have Been Away for a While!

The good thing is if there's few updates here and lots of gaps between each post, that means life is good!

Leo is thriving at school and very much enjoying it.

I was sent an email today from my friend Sarah who lives in Spain, where we used to be based. And I thought I'd copy and paste the contents here as it is a really good way of highlighting life after cancer. The following is written from the point of view of a lady who eventually was beaten by cancer but all of them rang a bell with me so wanted to share them with you;

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck
(written after she found out she was dying from cancer)..

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, 'Later. Now go get washed up for dinner.' There would have been more 'I love you's' More 'I'm sorry's.'

But mostly, given another shot at life, I would seize every minute.look at it and really see it . live it and never give it back. STOP SWEATING THE SMALL STUFF!!!

Don't worry about who doesn't like you, who has more, or who's doing what
Instead, let's cherish the relationships we have with those who do love us.

Phew!

So the only thing the doc wanted to talk to us about what to remind us to get the seasonal and swine flu jabs this winter!! Urgh....why leave a message saying he needs to talk to us, the week after Leo's MRI scan, when it's a simple thing like flu jab reminders?? Plus we were seeing him in clinic today anyway.

Oh well - the great news is Leo's chest x-ray was clear again today, so we can breathe again for another 2 months. We'll be celebrating one year off treatment in only 6 weeks time, and so the great news again is the MRI scans decrease to every 4 months now. Chest x-rays remain at every 2 months for the next year at least.

Haven't said it for a while but thank you for all your support - yes, diagnosis and treatment was pretty awful but we're still finding 'normal' life a little tricky, living with the fear of what may happen...but things are improving and having your support really helps.

Waiting Game

Leo's scan seems to be okay but his oncologist wants to speak with us according to his voicemail - we're positive it's not to do with the scan as if there was anything obvious on the MRI, then Leo would have been in the hospital like a shot as this type of cancer is so fast growing and aggressive that the doctors would not risk waiting a few days before starting palliative care.

We're seeing his oncologist on Wednesday for follow-up and another chest x-ray. The x-rays seem to come around so quickly but then I guess every two months is quick!

Wonder if there may be something up with the blood tests Leo had done whilst he was under general anaesthetic for his MRI nine days ago. The usual tests were done such as FBC (full blood count), CRP (C-reative protein for inflammation) and also for coeliac disease and thyroid function. Perhaps his thyroid has stopped or slowed down as a result of the chemo - not very common but does happen and may explain the slow down in growth / appetite. Having said that, since we saw the dietician a few weeks ago, we've implemented a really successful new regime for Leo and his eating. The result? He's eating more regularly and eating far more range of food which is very exciting!! Seeing him eating blueberries and salmon sure does bring a smile to my face.

School is going well and Leo is still enjoying things. He has a few new friends including Izzy; his teacher tells me they were holding hands today...aaaahhhh!

Anyway, only another 36 hours until we know what the doctor wants to speak with us about...

First Day of School

A rather excited Leo started at Ashton Vale Primary School this morning and having only been there from 9am through to 11.30am, he's still talking and talking about it now!!

Last week was what we now think will be our 'new' normality - spending time with friends and family most of the week interspersed with school now...plus a trip to the hospital. Most weeks this school term until Christmas Leo has a hospital appointment for different reasons so he will be used to school and hospital in the same week most of the time!

He had an MRI scan on Saturday - the results of which are unknown right now. The regular 2 monthly chest x-ray is due next Wednesday and so is his check-up with the oncologist which seems to have come around rather quickly this time.

We were fortunate enough to meet up with family last week on a day trip out to Thorpe Park. It was fabulous to see Leo holding hands with Charlie (his second cousin) and we all really enjoyed a queue-free day and getting really soaked on the log flume ride!!

Leo and I also went to the International Kite Festival yesterday with some friends; their daughter is currently having treatment for leukemia and so it's nice to meet up with people who live every day with the same fears PJ and I seem to constantly battle with.

Anyway, Leo loved school today especially as his school uniform is red and he also met up with some children with whom he spent a little time before the summer holidays when he popped into pre-school on a few occasions.

Tomorrow is a new day...and more school for Leo! Yippee!

School Tomorrow

Never thought we'd see the day but Leo starts primary school tomorrow! Yippee. He's very excited - so much so he's just woken up again!! So I'm off to see if he's okay...

Where'd He Get Those Moves?

Frustrating Week

We've had a frustrating week since we arrived home from the New Forest. Leo was fine and on great form at the start of the week, but then come Wednesday and a night wheezing whilst trying to sleep, we had a visit to the GP. It's the first time PJ and I have felt confident to head to the GP surgery and primary care instead of straight to the oncology department at the hospital.

Funny how things happen though as we spoke with the GP Wednesday morning saying that for our own sanity we just wanted the doc to listen to Leo's chest given his wheezing. The doctor said that's what they're there for and given she'd spoken with plenty of people that morning who didn't need a doctor, she would of course see Leo later that day.

And then here's the funny thing; by the time his appointment came about, Leo had a temperature of 39.5 and really floppy; not very well at all. The doctor said he had an ear infection, gave us antibiotics which have played havoc which Leo's tummy and a few days on now, he's feeling stronger.

Not sure about his chest as we were sidelined by his sore ear. The nagging irrational fear is that the ear which he said hurt was on his right side and that this of course, is where his tumour was. The wheezy chest is another matter and could it be the cancer is back and this time in lungs???

Either way, we're back at the hospital for yet another MRI scan which will allay our fears and we can speak with his oncologist then. More sleepless nights until then as is the way every couple of months...

The other majorly frustrating thing is that we're now mentally in a place where we feel happy considering a trip to the USA and Disneyworld Florida for Leo. Together with the wonderful Christian Lewis Trust, one of the UK's children's cancer charities, we're able to go ahead and book flights with Virgin to Orlando for next May. Due to Virgin's partnership with the Christian Lewis Trust, we do not have to pay for our flights until a few weeks ahead of departure as this helps us reduce costs of cancellation insurance which is ludicrously expensive.

Thanks to the Give Kids the World organisation in Florida, we can stay with them for a week and then the Christian Lewis Trust have negotiated preferential rates for families with children with life-threatening illnesses for a hotel in Clearwater for a further week.

So none of that is frustrating at all - the key thing which is very frustrating is that travel insurance for Leo is either extortionate or not available to the USA. The process of trying to get travel insurance quotes is ever so frustrating and frequently reminds you how risky this whole business is. Due to the fact Leo has chest x-rays every 2 months and head MRI scans every 3 months, this shows underwriters that Leo's cancer is high risk. We could consider going without travel insurance or even take a policy which excludes the cancer side of things; but it would only take a very simple and common eye infection in Leo's right eye and a swift trip to the ER whilst in Florida, and that could end up costing more than the policy in the first place.

So after trying eight different specialist cancer travel insurance brokers, we have only been given one quote and it's subject to underwriters agreement come April next year and the quote came to £3734 in total!! The other seven said his cancer was un-insurable (not sure that's even a word)!

What is an even bigger reminder of the risks Leo faces with a relapse is that if it does return, we'll certainly not be able to go to the USA as no-one would consider him an easy risk then! So if we really want to do Disneyworld, we really need to just do it. If we could do it at New Year or sooner then we would but flights have certainly increased with all the taxes these days so it's more realistic we can afford to go in May!

Agreeing that we're happy to go away to the USA now is one thing, but we need Leo's doctors to agree he can go which may be another thing altogether. And although he may be fine to go now, it would have to be a decision taken in April or beginning of May so let's pray that everything remains clear for all the obvious reasons but because Leo is always going to be in and out of hospital, whether the cancer returns or not, we would love to give Leo two weeks of fantastic Disney fantasy and take him, in a little bubble and yes, wrapped up in cotton wool, and away from these all-too-regular hospital visits!

Funny what happens in one year...

Just returned from a most welcome and fantastic holiday to the New Forest, and all thanks to the Lennox Children's Cancer Fund. They're an awesome UK based charity who help children and their families have a holiday in the UK, especially when it's tricky and expensive for international travel insurance for overseas trips.

Leo had a fab time having won the Best Dancer competition on the very first night of our holiday and then we went on to enjoy a thrilling speedboat ride in Bournemouth, a donkey ride at an amusement park, watched Scooby-Doo on the stage, went to the Isle of Wight for the day, admired awesome houses in Sandbanks in Poole and plenty more.

Ironically our holiday coincided with the week Leo started radiotherapy under a general anaesthetic this time last year so whilst we were on holiday, it was lovely to rnjoy how far Leo has come in 365 days. Certainly on this day last year, I can say with confidence, that we were still looking at another 25 general anaesthetics over another 5 weeks with chemo for good measure, and there was plenty of trepidation. And Leo may have been a smiley chap back then but he's a changed boy now.

A year on, he's a happy boy who thoroughly enjoyed entertaining the crowds at the holiday park with his dancing. And if you remember the Take That rendition Leo did about 6 months ago, wait until you see his S Club 7 grooves and moves! Uploaded here ASAP!

Life's An Adventure - Let's Go With It

So yes, Leo's and our lives have been turned upside down with this whole battle with cancer, which we now realise will never end due to the whole on-going medical care he will need, even if it doesn't come back!

But what we're starting to realise is this...perhaps we should use the experience, learn from it and kind of go with this journey. There's little else we can do.

We cannot control whether the cancer returns.

We also cannot control what happens if it comes back as that's a given...

But, and here's the thing, we lost sight of the fact we can control what happens whilst he's still clear of cancer. Living with the fear it may come back, even if the stats do say it's 50/50, is paralysing and almost made us go into coping mode...but now we should just go with it.

Simple, huh? I know! But this is a light bulb moment, believe me. And I knew it would happen at some point. It had to.

So what if our son has had cancer, in a way? He doesn't have it right now, at this very moment - as afr as we know...and so let's give the whole journey and experience a shake up.

Let it do what it should do and wake us up from this coma...shake us out of our comfort zone and get moving...what is it we want from life and how can we get there?

So it starts here...this blog is going to be all about hope from now on as after all, isn't that what we should be hanging on to? Hope that cancer does not come back; hope that Leo lives a long and fruitful life, and hope all those we love do too!

And hope that we use this experience to live a life we'd all be proud off. Yes, of course we enjoyed our new life in Spain before the whole cancer thing but shouldn't we know be thinking, literally, life is way too short so let's get living.

And so the most obvious thing to think about is a) what opportunities can we give Leo to ensure he lives a happy life, and b) how can we use this experience to help and have a positive impact on the lives of others?

Answer a) not be afraid of the opportunities and doors which open for us, plus maximise our dreams for him by taking regular and persistent steps to realise those dreams and
b) start the process of raising as much as possible for charities which go a long way towards helping children and their families when their worlds are rocked completely with a childhood cancer diagnosis.

It starts here and so any comments you would like to leave or any initial thoughts for fundraising, from the weird to the funny to the downright tricky, are all most welcome.

Tomorrow's a new day ... bring it on!

Put on those dancing shoes...

Okay so this has little to do with Leo and cancer and all those things but...it did raise a smile and so I thought I'd share it with you.

Great video, beautiful music and glad I stumbled across it...

Enjoy!

http://vimeo.com/1211060

It Never Ends

It's taken a few days for me to update on Leo's latest trip to hospital and once you read this post, you will realise why. We've had to take on board lots of info about Leo's future yet again and so we've has to take it on board properly before committing it to paper!

I guess we always knew and were made well aware that there'd be further treatment needed, as a direct result of the chemo and radiotherapy but, I think once the neuroendocrine doctor explained it all to us face-to-face on Tuesday morning, it really hit us that Leo will never be out of the medical system.

Even if our dreams come true and the cancer does not recur ever, Leo will always be seeing one doctor or another for something relating back to the cancer and its treatment. Tuesday's appointment to see the neuroendocrine doctor was all about the effects of radiotherapy to Leo's growth, early or late onset of puberty and his thyroid function.

To quote the doctor, it's 'highly likely' he will need the expensive growth hormone treatment starting in about 1 to 2 years time which consists of daily injections of growth hormone into his stomach until such a time as the doctors are happy with his height. This is expensive but vital treatment as the function of his pituitary gland will almost certainly have been affected due to both the high doses of radiotherapy as well as the region of his brain which controls growth which was irradiated. It's not just about height either but about his bones and organs growing properly and healthily also.

The second aspect is about puberty which will also be very likely to be affected by the radiotherapy. Early onset could mean it could start in the next couple of years and late onset would be just as detrimental, so this will be monitored and again, once there's a concern, another course of treatment will be started.

Finally, Leo's thyroid may not be functioning properly as a direct result of radiotherapy. Not as likely to happen but is still a huge possibility so next time he has an MRI scan, the doctors will do a blood test to check the thyroid function. Any problems on this front can be 'easily' rectified by one tablet a day for life - I say 'easily' because the thought of trying to get Leo to take a tablet every day is not something I'd like to think about, but then it's easier than the growth hormone treatment which is more likely! But then I guess children with diabetes type 1 take daily insulin injections into their tummies so no doubt with some help and training, we'll have this off pat too.

Apart from all this, Leo's been in summer school all week and spent the mornings up at Clifton College doing lots of jumping in puddles, painting and playing. His eating regime is improving slowly but surely so that's quite pleasing and he is still very tired, but getting stronger day by day. By the time he starts 'big' school in the middle of September, he should be just right!

Still Clear

Another chest x-ray clear so another booked for 2 months' time. Dr. Steve was pleased with Leo this morning, who once again was quite hyper, as he always is when he sees his oncologist. He giggles when the doc tries to examine his tummy and glands, and then proceeds to try to look at his chest x-ray and play with the doctor's stethoscope! At least he's comfortable in the hospital, I guess!! Leo was so god having his x-ray too - so much so that we when we came out of the x-ray room, PJ thought something was wrong because we'd been so quick.

We've decided to start the MRI scans on his head again as the doc asked us what we thought - confused? Me? Yes - because we had decided against having them last time around as there was no clinical worth as such because the cancer he had was so rapidly growing that it would not wait for a scan to show itself again. Having said that, and having had a lengthier discussion with Leo's doc, it appears that if it recurs in his head again, then it may not necessarily grow in the same place or in the same direction and make his eye do what it did. This means it could grow backwards into the brain or elsewhere and so asymptomatic for a while. Albeit if it recurs, there will be little chance of a cure but if they do catch it earlier than later, then maybe more can be done or the teatment could be more bearable.

All this being said, we've had a few weeks of nice family time and relaxation and almost a 'normal' life as it could be called. And then it's back down to earth with a bump with chest x-rays and seeing all the other children and adults on the oncology day beds ward at the hospital.

It feels like yesterday we were there practically on a weekly basis and actually it was a year ago we were preparing to head to the Royal Marsden for six weeks of radiotherapy under a general anaesthetic each day. Seems so long ago but actually, he's not yet a year out of treatment and so we are still so grateful for every day as there were times when we secretly, individually and privately wondered if we'd still have Leo with us.

On a more positive note, Leo is thriving in pre-school although only going once or twice a week and he did us proud when he played Bugsy Malone at his Stagecoach end of term presentation. He had the most lines and is the youngest in his class!

We also saw lots of out family recently as Uncle Andrew was home from Dubai so we were lucky to spend time with Sophie, and Leo just adores his cousin. He wanted me to take lots of pictures of them together and not being shy around the camera, the two of them duly complied with some lovely shots.

We also spent a fabulous day with my cousin's children who Leo also loves seeing. We're lucky to have fabulous families on both sides and I do think one of the great things to come out of Leo having cancer is appreciating family much more plus we're living in the UK so able to see them more than we would do pre-cancer.

Life works in mysterious ways but maybe this is the plan for us...

Doing Just Great ... again

Leo, showing his energy plus his affinity to the Lions rugby team in his new kit, and giving us some tunes!

Okay so Leo is tired and sleeping lots, has a cough, not eating all that great BUT... these can all be explained by other things such as the heat or normal childhood things. Still means the docs will check his thyroid function next time we go to the hospital as the chemo may have suppressed his thyroid function.

He is doing a bit of pre-school here and there and also has been up to 'big' school a couple of times now, and he is so very ready for school. And also looking forward to it, which is fantastic and a real relief. Each week PJ and I see him becoming more and more of a normal child which is heartwarming.

Doing Just Great and an Inquiring Mind

Leo is doing great right now. Oodles of energy and really growing up fast. Not having any other children, PJ and I can only stand and watch as Leo amazes us with his wit, energy, love and artistic expertise, and we wonder whether other kids are the same. I am sure all parents are the same!!

We also wonder what he'd be like without all the stuff which has happened to him. We think he's very grown up as he spends a lot of time around adults, and even more so because of his fight with cancer (which he is winning right now). But we can't help stepping back sometimes and wondering why this happened to him, how has he managed to do so well and what now?

Unfortunately, and I've tried to explain this to a few people recently, we're at a tipping point in our lives, where we're trying to plan a future and permit ourselves to even think about a future - when I say future, I mean, can we imagine Leo as a ten year old? Why do our hearts still sink when we hear people talking about or ask what he'd like to be when Leo grows up?

It's almost as though we're just getting our heads around him starting school properly in September, and that's only a few months away. Believe me when I say that only a month or two ago, I could not have said I was excited about Leo starting school because I could not get my head around him making it that far. And that's about as far ahead as we can imagine at the moment. That's not to say that as time goes by we won't allow our thought process to imagine the next year ahead of us, instead of just the next few months.

Seriously, Leo is doing just great. The most recent check-ups were clear so Leo is winning the fight, but as I write that, my heart skips a beat that he should even be in this position. A child's life should be carefree. And life should be all about what we dream for our children, not what we fear. But that balance will switch - the fear will lessen and the dreams, very different dreams, will show themselves much more. We hope...I guess without hope, we have no life.

A few weeks ago we were all in the car to a charity golf day captained by one of our friend's fathers, and they were raising much needed funds for Clic Sargent. I say this because it was on this particular car journey that Leo asked a rather huge question...it was a rather poignant moment when Leo asked PJ and I why we came back from Spain...

Amongst both our hearts stopping in thinking how do we answer that, I stupidly said it's because I had to have an operation on my tummy, knowing halfway through this answer that it was rubbish and that Leo deserved to know the truth without him thinking it was his fault.

And so through tears, I explained we came home because we needed to make the 'baddy in his head' go away with 'the medicines and wobbly juice'....and then there was a pause....and Leo's voice, sad as we've ever heard, replied, 'I wish I didn't have to go through that'.

Boy, did that make PJ and I sob our hearts out for him as hearing your 4 year old say he wished he didn't have to have all those meds etc and return from Spain where we were really settled and happy, is very sad - and in 'normal' life, children his age should never feel those emotions. I guess this is all part of the healing process and will eventually help us all cope with life a little easier...

Tomorrow's a new day...

And Breathe...

A collective sigh of relief as Leo's MRI scan is unchanged and chest x-ray is clear.

The only things we need to follow now for the next two months until his next chest x-ray is to check whether he's developing cataracts, and also get some decent sunglasses to protect his eyes in this sweltering summer we're due!

Plus we're going to have his height and weight followed up at an oncology-endocrine clinic to ensure he is growing as he should. I did joke that height is not exactly part of Leo's genetic make-up but in all seriousness, this could prove even more problematic.

The damage done by the radiotherapy, plus the 7 months of chemotherapy which arrested his development altogether, combine to slow and even stop his growth over the next year or so. He's grown about 2 cms in one year and whilst he lost lots of weight during treatment, he's only now back where he was when diagnosed. So a close eye is needed to see when they decide the time is right for the growth hormone process to start.

The lump we found on Leo's right arm is not too much of a concern as it's not discernably bigger in the past week. This is good news as rhabdomyosarcomas grow very aggressively and very quickly. It has not grown or if it has, it's growing very slowly so just keeping an eye on things for now.

So life continues for the next few weeks and the process of increased anxiety starts all over again until his next chest x-ray in two months time. This is a completely irrational emotional reaction as cancer does not wait for x-rays and scans. If it decides to grow, it will do so and the rational thought process is that the cancer could now be growing and we won't know about it for 2 months! That might be a good thing to not know about it though as at least we can try to continue as though it's not here? Does that make sense?

If you don't know you have cancer, your quality of life is surely better because as soon as that death sentence is cast, and that's what it would be if it comes back, life then changes in ways I will not allow myself to even think about ...

Tomorrow's another day ... and I will embrace it as though it's our last ... yet again and s I do every day.

I am so grateful to be able to spend my days with Leo. He's a joy and a treat to be with - I may even share with you some of his most recent artwork which is outstanding, but then I would say that as the most proud mum in the world, ever!

Updates

X-ray on Monday afternoon to check Leo's chest - just your routine, bi-monthly pictures to make sure no cancer has developed there.

MRI under yet another general anaesthetic is on May 18th to check the left-over chunk of (assumed dead) tumour.

We've definitely noticed Leo squinting more now the sun is out a little more here in the UK. So obviously, we wonder whether it is actually due to the weather or if he's having a few more problems due to the radiotherapy or initial tumour. I guess we'll find out when we follow up with Leo's oncologist post-MRI scan and in his next eye appointment. Unfortunately without putting any suggestion into a question, it's quite difficult to get a 4 year old to really tell you what the problem is with an eye which he knows has caused problems this past year.

We're also well on the way towards improving Leo's diet and the amount he is eating each day. Until Monday, which was exactly a year since diagnosis, Leo had not put on any weight in a year - well he had lost loads and then steadily got back to the same weight. He weighed 16.5 kg on Monday, May 4th, 2009 which is exactly what he weighed the day we went to the Children's Hospital for the initial MRI which would change our world forever on My 4th, 2008.

However, we introduced a rather quirky bedtime routine last Monday which includes an MP3 track of soothing words about eating well means lots of energy and playing outside, and doing lots of fun things...and since then he's not only put on nearly 1 pound in weight (in 5 days), he has also tended to eat a much wider variety of food without the stress and arguments each time we tried to encourage (and make) him to have food.

We have a treat for Leo lined up tomorrow. All 3 of us are off to ride on the real Thomas the Tank Engine and he doesn't know! Cannot wait to see the surprised look on his face at 11am tomorrow!

Thanks to you all for sending the cards and emails of support at this rather weird time - one year on since diagnosis and I think it's safe to say, we're so very grateful for all your support over the course of the past year. Will report on the x-ray and scan as soon as we know something and hopefully, fingers and just about everything else crossed, that we'll say no change. Nerves will be shredding between now and that follow-up with Leo's doc..yet again!!!!! Am sure it will get better.

Thanks again.
H, PJ and Leo xxx

365 Days

A year ago tomorrow our lives changed so significantly that sometimes it's hard for us to really remember life before the big C! However, despite many negatives which are well documented both here and in the minds of all those who know Leo, there've been many positives too.

I'll say that again because it can sound a bit weird...despite Leo having cancer, we've actually found things to be positive about. And yes, most days are really hard. Hard just to get our heads around life as it is now and any future that's mapped out for us all, but generally, on the good days we appreciate life so much more. After all, we do know families whose children are not going to make it and whilst that's still out there for our family, we're currently not there and so we need to be thankful for another non-treatment / non-cancer day, and every day until / or if our worst nightmares do come true.

And this is why the past few weeks with Leo have been simply amazing. He's not been at nursery as his energy levels are still so low, and therefore Leo and I have been doing things each day which make me so happy and proud to be his mum. Despite wondering whether the chicken pox are not out of his system yet (more spots this week - bizarre or what???), not eating and still tired, him not being at nursery school has meant we have spent some serious one-to-one quality time together. His behaviour has been impeccable which is a significant improvement and those anxiety concerns we had before he had chicken pox have dissipated - so perhaps all he needed was to not feel like we were dumping him at school and more time one-to-one with his parents.

Another scan in a few weeks plus yet another chest x-ray, although if Leo does what he did on Friday again, then we may be back at the hospital before these scheduled visits. He took himself upstairs to bed citing a sore tummy and that his legs hurt? Strange but then I guess there must come a point where if you're not eating properly and constantly tired that you're bound to feel like heading to bed and an adult would have done so before now!

So much has happened in the last 365 days and whilst, yes, of course, we wish life was different and cancer had not made us appreciate things we previously took for granted, it has and for that we're grateful.

Slow Progress

Leo is doing well but getting better slowly - having said that, the doctor did say that if either PJ or I had chicken pox with the immune system Leo has at present, we'd be off work for a further 3 to 4 weeks! So we cannot expect too much of him. I've decided to therefore cut work right back and be a full-time mum, and only working once Leo is in bed. As a direct result, he's been really happy with very few of the temper tantrums and anxiety concerns he was showing before. Big lesson to have to learn and own up to the fact that I am not a good part-time Mum / part-time career woman. I've paid the price and more importantly, Leo has paid the price for having a Mum trying to be all things to all people; he has clearly suffered but at least we're on the right track now.

Despite Leo wanting to go to the hospital a few times this week (which also happened when he's been in hospital a while back in February after his birthday), he's had fun at the park, Avon Valley Country Park and with some new friends too. We've also made the most of the lovely weather and played football and golf out in the garden this week too, with PJ having to forget how tired he is when he finally is home from work, as Leo soon perks up despite being super-tired - Leo does a very good job in the puppy-dog eyes and before you can blink, Leo and PJ head off to play football for 30 minutes or so.

Back to the hospital again over the next month or so with another chest x-ray (how many can children have in a lifetime?), and his third post-treatment MRI in mid-May. May be interesting to have his eye checked too as a few times, PJ and I have noticed his eye-lid sagging a little more, but we're putting this down to his sheer tiredness.

Hard to believe that it was exactly a year ago I returned to the UK for my surgery and on the spur of the moment, booked flights for PJ and Leo. Thank goodness I did otherwise they'd have been in Spain when this all happened and I would have been stuck here recovering from a major and life-changing operation. Funny how things happen...

What could possibly happen in the next year? Actually, as soon as I thought and wrote that down...I wished I hadn't...your brain goes a-wondering where you'd rather it didn't when you think about the future...

About the most we can look to is tomorrow and the next month or so...and tomorrow's a new day!

Home Tomorrow

So the pops are going and Leo should be home tomorrow - yippee! He's practically turned his room into an art gallery so tomorrow we need to make sure we pack up properly and not leave any art behind! He'd know, for sure as he remembers everything. I've added some pictures which show what Leo's been up to with some rather more interesting things to do with a hospital bowl...

Once home, he'll have another 10 days of oral anti-viral meds to take which is in addition to the last 7 days of IV anti-virals. We're also likely to keep him relaxed and not doing too much so as he can get better without any hiccups. Not sure if he'll be back at school Monday but we'll wait and see. As and when he does go back, he's been off for nearly three weeks so we'll need to be careful to phase him in properly otherwise we may end up in the same place as before, where he wasn't eating and having anxiety problems.

Another Few Days

Leo's doing a bit better - well enough to do lots of artwork and sticking and learning, in between sleeping! His temperature is more regulated now and only spikes back up to the 39s once a day so that's better for him, and makes him more comfortable.

He still has new pox coming out each day so the virus is active. Today's new pox were on the soles of his feet and in between his fingers, plus one of the earliest pox has become infected so we just need to keep an eye on it.

Fingers crossed he'll be home Wednesday evening sometime..we hope..as long as the pox stop cropping!

Not so Top of the Pops

Leo calls them 'chicken pops' and has kept denying he has them, but his chicken pox are more problematic than we'd first thought. Indeed, we should have taken him into hospital as soon as we knew on Tuesday that he had chicken pox, and hence had to leave our holiday in Scotland. Leo should have started anti-viral drugs then, but me being me, I thought we had to assume 'normality' now he's getting further from his treatment.

As it is, Leo's been really poorly, as many kids get with chicken pox; he's also had a temperature of 40 and today was only taking sips of water if that. So I finally gave in and called the ward at the hospital and told them his temp was high, that he'd had chicken pox since Tuesday etc etc. They told us to go in for blood tests to check his immune system and it seems that the protocol is that within the first six months post-treatment, the part of his immune system which deals with viral infections such as chicken pox, is not yet strong enough to deal with it. Complications with children with low immune systems include infections of the brain and heart as well as meningitis.

What we didn't know was that he really needed at least 5 days of anti-viral drugs via an IV starting ASAP and so despite Leo's major protestations, the doctors managed to take blood and get a cannula into his hand. They gave him some painkillers and the anti-virals, and as soon as the painkillers kicked in, Leo finally managed to sleep and his temperature came down to 37.9.

So what we know now is that he'll be in for at least 5 days and he could be in for up to 10 days for IV drugs, depending on whether his body starts to fight the chicken pox itself and with the assistance of the drugs.

Hopefully the drugs will help the pox on his tongue and in his mouth go down, which means he'll be able to drink more and maybe even eat at some point. I just hope he just feels better soon.

Fingers crossed...

A Welcome Break

After about 8 hours including breaks for food, bathroom and refueling, we're back at the magnificrnt Malcolm Sargent House for a week-long break. Whilst Leo's been so excited this week about our holiday, he's also been the most tired he's been in a long time. We decided to keep him at home and let him rest instead of taking him to nursery school. He'd have a 3 to 4 hour sleep every afternoon and then sleep for 10 hours overnight too plus his appetite has not been all that great. So a holiday is a welcome break for all three of us.

Hopefully we'll all be able to get some good sleep, sea air (as the house is on the beach) and just generally relax, ready for whatever may be thrown in our direction.

We've also decided to reduce Leo's hours at nursery school as he's obviously finding things quite tough right now, and whilst he loves nursery, if he's too tired to eat, then that's not a good thing. So for a month or more, he'll only be in school for a few hours three times a week - and then we'll reassess.

A Walk in the Park

Despite Leo being super-tired with 3 hour full-on sleeps every afternoon for the last few days, we still managed to enjoy a lovely day out in the sunshine with good friends yesterday...and here are the photos to prove it!

Nice weather in England, I hear you cry? Well, yes! Chilly but with fabulous blue skies. Weather, great company, awesome son and husband and a lovely countryside which makes you feel elated to be alive.

And Yet More Hospital Visits and Unwanted Temperatures...

Not a week goes by it seems without more unscheduled hospital visits and so last week Leo had another chest x-ray due to his on-going cough - x-ray was clear but to go back if he continues to lose weight and his chest / cough does not clear up.

Then Monday upon picking Leo up from school, his right eye was bright red and bloodshot, and it wasn't like that in the morning. So yet another conversation with the oncology day-beds unit who said they'd see Leo down in the kid's A&E department.

We all knew it was a simple viral conjunctivitis again but because it's his right eye, we need to make sure the infection does not take hold. He is more susceptible to these eye infections as we were reminded a few weeks ago but it does feel like it's one thing after another Leo. Having said that, he does take it all in his stride!

Today his temperature has started to creep up again but then his eye seems better with the ointment so not sure what the next few days have in store for him.

Updates and Baldy (including pictures)

Lots has been happening this past week.

Leo's enjoyed his Gramps's birthday and spent some lovely time with Nan and Gramps last Sunday. It's PJ's turn to celebrate a birthday this Sunday and Leo's been busy drawing and making birthday cards for him.

We've also been to the hospital again today for an unscheduled check-up. Leo's chesty cough seems to be not getting any better plus he seems to be losing weight so his consultant asked us to take Leo in for another chest x-ray, just to be on the safe side. Nothing untoward was found on the films and so it's life as usual. I guess the good thing is this wonderful sunny weather means we can encourage Leo to spend lots of time outside, which hopefully should help get rid of his chesty cough.

And then there's been some more fundraising and this time in aid of finding a cure for childhood cancers. Patrick O'Hagan is a Chicago cop who is a member of our extended family, helped PJ and I massively when we lived in Chicago all those years ago and has also been very supportive with lots of messages of good luck and best wishes since this whole adventure started for Leo.

Now whilst a cure will never be found for Leo - quite simply, there's just no money in finding a cure for Leo or other children like him as so few children get this type of cancer so the concentration for a cure is for those with leukemia and more widespread cancer.

Patrick, being the kind-hearted man he is, has joined an amazing charity St. Baldrick's. They fundraise with the main wish to help fund a search for a cure and help many, many children and Patrick had already helped them with some fundraising this time last year, so before Leo was diagnosed.

So this year Patrick's fundraising has taken on a bit more impetus now he knows of Leo's situation and he's raised over $2000 and you want to know how? The clue is in the name...St. BALDrick's!!!

Before and after pictures are above - enjoy! Well done, Patrick. Hope it grows back in time for you to do it all over again next year...it's all for a good cause!

Why?

We all know that children get to a certain age and then eveything they say ends with 'why?' And today, Leo and I had a conversation of why this and why that for about 40 minutes. Some of it related to why do people get sick and why do we need hospitals and why is Mummy tired today? I think Mummy is tired today because of all the questions!

I've also spoken at length with Leo's school who have been nothing but absolutely supportive towards us. They completely appreciate that given what Leo's been through, he was bound to have some sort of 'issues' at some point. Sooner rather than later, I say, as it means we can deal with his anxieties now before the have time to manifest themselves in other more worrying ways.

We probably all need to work on our anxieties and ensure we do a better job of shielding Leo from our concerns and so, from now on, no conversations with other people about Leo and the future will happen in front of him. He doesn't need to know what may or may not happen in the next few months or years and so why let him hear it ... he needs to know what is planned with his doctors so if we have a scan or an eye hospital check-up, then clearly we need to prepare him for these events. But things beyond our control such as relapse can be protected from him.

And now for something a bit more light-hearted. A video of Leo and his fixation with chocolate.

Enjoy

Happy Days and Chocolate Face

Leo's been a happy soul this weekend and today, this happy behaviour has been interspersed with some things he's said which are a cause for concern such as not being able to breath and how he wants to be a baby again because then he won't be sick again. So tomorrow Leo is back to nursery school in the morning and I am on the hunt for some answers on how to help Leo with his bouts of anger and anxieties.

What, If Anything, Is Going On?

So I get to school to pick Leo up on Thursday evening and I'm asked to speak with the Deputy??? It was very strange, as anyone will tell you, it feels like you're back in your own school days, not those of your 4 year old son.

After discussing how traumatised Leo was when one of the other children was showing a photo of their new baby sister who had a tube in their nose, we then had to discuss a horrendous incident which resulted in Leo biting the Head and both punching and scratching one of his favourite teachers.

Now this kind of behaviour was last seen when Leo was first diagnosed last May, when he was incredibly angry with me as he blamed me for being back in England and could not understand why I had been in hospital and now he was. We managed it then with some useful anger management strategies including telling him it's okay to be angry and that if he wanted to hit something, he was to hit a pillow. Very quickly, but not easily, his anger calmed.

However on this occasion, he's hitting out at other people with whom he has built trust and also happy relationships. This incident is also built on the fact he's been more clingy with me over the past 10 days, certainly has a cold plus has repeatedly said he'd like to go to hospital because he's sick again. Unfortunately he also started telling me he had a big eye again (but there's no obvious swelling or poking out of his right eye at this stage so no dreadfu concern but partner this info with everything else and you cannot help but have awful thoughts going on).

To add to this, he has a cough and today he asked me to turn the CD off in the car because he wanted to tell me that sometimes he feels like he cannot breath?! (Do not panic, H....ask him another question with no sign of concern....; this was my internal chat with myself once he'd said this). And so he went on to say he sometimes feels like he cannot breath and it's not his cough and so I asked if he had pain anywhere and he said his neck hurt. All a bit odd and not really what you want your 4 year old son telling you.

During the incident at school, he had also put his hands round his own throat and was saying 'you're hurting me, you're hurting me', which we had taken to him trying to get a reaction from his teacher who was trying to calm him down. But now, with this further info from Leo today, I now have a niggling thing going on in my head about whether he really has an issue with his actual neck, or is it because of the cough? His food intake is down but he is drinking so perhaps this indicates little or no throat soreness?

Anyway, if we try to get our heads around it and try to be rational, then those awful irrational thoughts always force their way in.

So we hope to be able to speak with his oncologist on Monday as well as meeting with his school, who have been supportive since Thursday's incident. With luck, we will be able to also be put in touch with the hospital's children's psychology team who can advise us all on some strategies to deal with any further concerns, anxiety and anger which Leo may be have.

The Ups and the Downs

The Ups - events like last weekend in Uxbridge with my old school friends and seeing Leo's smiling face when the bands were singing and then someone started playing drums, and he was beside himself with excitement about these new rock stars!

The Downs - the on-going coughs, the endless cold which we're never sure will turn into an infection again, the coughing up of phlegm then promptly swallowing it again - and yes, all these things are perfectly normal childhood winter things / issues, but our senses are on edge at all times. And so if he continues to have low grade fevers and getting so very tired and not really wanting to do much, then at what point do we call his doctors? I guess we'll just know.

Bless him, Leo keeps saying he needs to go to the hospital because 'I am sick, Mummy' and then follows this up by talking about his big eye and small eye??? Panicking...me? You bet! But enjoying Leo and what he brings to us every day. His smiling cuteness, his funny jokes, his singing and dancing and his energy when he talks about rock stars!!

Rock n' Roll Baby!

What an awesome night was had by just about everyone at the Abrook Arms in Uxbridge last night!

Leo loved it and everyone involved was buzzing. Matt Tombs, who organised the entire event, with the help of loads of musicians, and Martine and her mum at the pub, have all done such a stellar job to raise crucial funds for Clic Sargent, who in this economic state just like other charities are being affected.

The total raised on the night so far was just over £1500!!! What an awesome effort and thanks for all involved.

Leo will forever worship Rock Star Matt, who will forever be fixed in our hearts for his mighty fine support, belief, discipline and all out 'let's do this' attitude.It's a massive credit to him personally that so much cash was raised and that so many people turned out for the big night.

Thanks to all.

H x and Leo xxx

The Ups and Downs of Post-Treatment

A strange and very long week for all but it's another week gone by and nothing horrendous has happened. Although Leo is quite tired and full of cold, he's enjoyed school this week, albeit he spends all day in the art room and was fantastic with the doctors and nurses on Wednesday.

On Wednesday, we had his monthly follow-up with his paed oncologist. This is the one doctor who Leo would always play up in front of during his treatment and until the turn of the new year. This is purely because we only ever saw him when there were tough decisions or bad news to be shared and digested. This doctor is softy-spoken, very kind and very detailed in his approach to sharing information with us about Leo. He totally understands that he is also treating PJ and I and our rational and irrational fears, especially now that Leo has finished treatment.

So what have we learned this week? Well, a few things were purely a reminder of what we'd forgetten we already knew...such as the fact that Leo is really susceptible to right eye and sinus infections, just like the one he had at the end of January / beginning of February. The penny dropped when his doctor reminded us of this, as we had been told this by his radiotherapy consultant last summer when we met with him, but of course, we're given so much information and so many details during the course of diagnosis and treatment, that things get lost or forgotten along the way.

I asked if we'd always have to go via our GP for treatment when he next gets sick with his sinuses and eye, and reminded the doctor that the GP had told us there was nothing wrong and if anything, it was all just 'normal' childhood illnesses and that I shouldn't be 'so paranoid'.

Thankfully, his oncologist was sympathetic and said most GPs never see children with cancer, never mind someone with the cancer Leo had. Plus actually, each time he gets this infection, because let's not kid ourselves, he will get sick with another one, we should always be seen by his oncology doctor at the hospital. Leo will most usually have to be treated aggressively with IV antibiotics for a day or two, followed by a further week of oral drugs. So thank goodness his doc appreciates the issue parents and children have with the odd GP who just doesn't 'get' it!

The second thing discussed in detail was relapse. Detail in terms of what we can and should be looking out for. Sadly, there's not much can be done if or when a relapse happens as we've always known care would be purely palliative. But heaven forbid, the big C decides to make a comeback, it's likely to occur in his lungs / chest. However what we learned this time around is that as parents we cannot look out for any obvious signs this has happened or starting to happen. Doctors will only know in the quarterly chest x-rays, the next of which is next month. In a way, this is a good thing as it means we don't have to be constantly evaluating any symptoms Leo is showing. On the other hand, you live in the shadow of having no control and never knowing what's happening inside our son's body.

The other major symptom which will be very obvious is if his eye starts to pop out of the socket again. We've seen it before and so will almost certainly recognise the symptoms. Luckily (?) he has had the maximum and most aggressive radiotherapy that he can have in this area in order to try to provide local control of the tumour so fingers crossed it has done the job.

And then here's the surprising bit of our meeting from Wednesday; the third way he could relapse is via his blood / bone marrow. And so as parents, if Leo is very poorly, lying on the sofa or not able to get out of bed for 10 days or more, so really very sick indeed, then we need to seek further help. Simple blood tests and bone marrow aspirates will then show whether he's just got the flu or he has relapsed.

We feel happier knowing all these details even though we'd rather not have Leo ever bee in this position. But thankfully, Leo is smiling and laughing alot. He's living life and enjoying nursery school. He even remembered events and things which happened before we moved to Spain today, which is lovely to hear him talking about things such as our cat we had back in 2007 when he was only just 2 years of age. It's nice to know he does not dwell on his cancer probably because whilst he knows he was sick, it does not resonate with him as much as it does for you and us. It's also nice that he is feels secure and really rather settled in the UK; he does not talk with sadness about Spain and whether we're going to return. That makes us happy.

And so to tomorrow...Leo and I are off to Uxbridge, which is where I grew up when we returned from the USA as a young child. The reason we're going is that some school friends of that time in my life, have gotten on and organised an awesome line-up for a live music fundraiser. Many do not even know our family but Leo's story has reached them and Matt Tombs, an old school friend who I've not seen or spoken with for 17 years, has been manically organising the evening which is going to raise some much needed cash for Clic Sargent. The current economic climate has significantly affected Clic's funds and so we're thankful there are people like Matt on this planet.

Photos and updates of the night will be available here ASAP.

Thanks again for your supportive messages this week and please know we very much appreciate your prayers and thoughts for Leo and all the other people affected by cancer.

Thank you.

H xxx

Reprieve

The best way to describe we're feeling is how my Auntie Lily described the news that Leo's scan results showed no changes from the previous one; it's a reprieve.

We know that if the cancer is going to grow again then it wouldn't wait for a scan to show itself and also we know that if they'd been able to operate and surgically remove the bit left over in his head post-treatment, then perhaps we wouldn't be so nervous day-to-day. Don't get me wrong, we're not living our lives thinking he's going to relapse but there's always that risk. We live with those thoughts from time to time but a day never goes by without wondering if life has something different in store for Leo soon. If he complains of a head ache or if he says his neck hurts, then it's perfectly normal for us to worry perhaps more so than if he'd never had cancer.

I wanted to thank you for your support during the past weeks also. We could not get through this time without the emails, texts, cards and phone calls so thank you. We're also more than aware that we're not the only ones going through this. Other families will have had that awful news today, and another family tomorrow; in fact, in the UK, 10 families every day have their world fall apart due to childhood cancer. Whether their child has just been diagnosed, just finished treatment or whether they've relapsed, our hearts and thoughts are with all those families also.

So we'll take this reprieve, thank you very much. We're seeing Leo's oncologist tomorrow so must write out our questions this afternoon so we cover all our concerns and queries. And then the next test is the chest X-ray in 6 weeks time.

Right... off to school for Leo now where we mainly plays in the art room...we'll make an artist of him yet!!

'Unchanged'

Happy and relieved to report that we finally have the results of Leo's second post-treatment MRI scan - it was 'unchanged' (doctor speak for still the same) in comparison to the scan from mid-November.

Short but sweet. Nothing more to say. Phew!

Anyone Have a Time Transporter Handy?

So what we'd like, if you happen to know anyone who can help, is a time transporter...can you help? KnNow anyone with a spare Doctor Who portal stuckgatheirng dust in their shed? We just want to bounce life forward to next week. No big deal. I know we shouldn't go wishing our lives away as every day is precious, especially these days, but we would kind of like to skip the next few days and get to Monday as soon as possible.

Reason being?

Leo had an MRI scan yesterday and there were no oncologists round to read the scan pictures before we left the ward. His oncologist is away on holiday and so not back until Monday and although we're booked to see him anyway next Wednesday, its hard knowing that not 3 miles from where I now sit, there are pictures what's going on inside Leo's head, which can tell us what's in store for us all over the next 3 months until the next scan!

Leo is also poorly again with a high temperature and streaming nose. The anaesthetists were close to cancelling his scan yesterday but given he has to have the scans every 3 months anyway, they felt it best to give him the anaesthetic, knowing there were increased risks involved.

Plus Leo is telling us his head hurts so Calpol is going down a treat right now. Whilst he was under the general anaesthetic yesterday, the doctors took more swabs of his throat, nose and eye again to see if the strep infection he had two weeks ago is back already or never left in the first place! It will be a shame as it's horrid to see him feeling so unlike his normal cheerful, energetic self. It also makes it difficult again to ensure any infection does not track back into his head where the left-over tumour is from after his cancer treatment. If it gets there and even into the tumour, Leo could get very sick so we feel like we need to keep on top of it constantly.

I know the old saying that 'no news is good news' but without Leo's oncologist in the actual hospital this week, we kind of have this fear, even if it is an irrational fear, that no-one is on top of Leo's scan results. Wouldn't it be awful if something was wrong and no-one knew about it until his doctor was back next week? I guess it has illustrated how diligent his oncologist is as he always knows when Leo has a scan or needs a test result and he's always there to see us and reassure us or just answer our questions, even if they're inane and he's answered them a million times before. Even if he is the most direct doctor who sugar-coats nothing for us, we'd rather have the info and all the details than have no knowledge at all...which is where we are right now!

Fingers crossed, sleeping tablets invested in and keeping away from anything which will increase our stress levels this week...

Tomorrow's another day but we kind of wish it was Monday already...if you know what I mean!

Waiting for Tomorrow

Tomorrow's sees Leo's next MRI scan, again under another general anaesthetic. It'll be the second after his treatment ended and as his oncologist is on holiday this week, we'll have to harass another doctor to look at the pictures tomorrow so as we won't have to wait until his doc returns.

He is still complaining about a pain in his head, has not wanted to eat for the last two days and has a low-grade temperature again of between 37.8 and 38 degrees. He also is not interested in going out anywhere regardless of how much we tempt him.

So whilst he was very good about taking the week's course of antibiotics for the confirmed strep infection he had in his eye and throat, perhaps he has not had enough drugs to kill the bug and it's on its way back? Who knows? Could it be something else instead? Again, who knows?

Tomorrow's another day and Leo's just gone to bed knowing he's having 'wobbly juice' again so fingers crossed all goes well with the anaesthetic and everything else...