Team Leo

Long Overdue

2011-03-28T01:25:00.003+01:00

A long overdue update - lots has been happening. Can't remember when we last 'spoke' but here's the lowdown:

Leo had the cataract in his right eye removed and replaced with an IOL at the end of February ... so far, so good! His close vision was nil with the right eye alone and at distance was 6/48 which means that just using his right eye, he'd have to be at 6 metres for something I can see with my glasses at 48 metres. So his sight in that eye is 6/15 and with no close vision as the IOL (implanted lens) does not accommodate as 'normal' lens do. He can see distance but not focus. He's therefore currently using his left eye for reading and close work such as writing and once the cataract in his left eye starts affecting him day to day, the doctors will replace that lens with an IOL also. This then means he'll need bifocal glasses.

So all was going well and the bit PJ and I dreaded most after finding out the doctors may not be able to put an IOL in i.e. he'd be blind in his right eye with no lens, was the eye drops post-op. Sounds very silly doesn't it? Leo has had chemo and radiotherapy, blood transfusions and far too many drugs to name here ... and yet, we were worried about the eye drops. Purely because Leo has always hated eye drops. Having his blood taken ... no probs. Eye drops ... forget about it!

But lo and behold, why should we be surprised that Leo steps up and does a grand job with his eye drops and even goes back to school one week early after his op because he's just on awesome form.

Phew!

BUT then he develops this 'growth' of sorts on his eyeball itself. You couldn't see it to look at his eye. You could only see it if you pulled the eyelid down and he looked up at the ceiling. So it's kind of hidden away and his eye feels hot. Leo described it as having a 'hot force field' around his whole eye. Not good. The long and the short of it all is that after seeing four eye specialists, he has a hole in his eye from an injection given during surgery. The injection was for a steroid which 'may' have been injected at the time of the op. I say 'may' as the steroid and injection are not listed on his surgery notes. I know because not only have I seen them but I asked the surgeon to show me where this injection and prescribed drug he thinks he injected into my son's eye was not listed anywhere. This after the same surgeon had 3 hours earlier said he didn't know what this 'growth' was, had nothing to do with the surgery and that we should start looking at other issues medically such as leukemia or tumours relating to radiotherapy or sarcoidosis???

I am now happy to say that after a week of the hole in Leo's eye getting bigger, it is now staying the same size. So nothing is needed intervention-wise just yet. He is on 3 lots of eye drops - steroids to help it heal, antibiotics to help prevent infection and also a lubricant as he has a very dry eye due to radiotherapy. None of the 4 eye surgeons we've seen including Leo's surgeon have ever seen this type of thing before so we're not sure what the future holds for that right eye. I hope the eye heals on its' own with no surgery as surely if it requires surgery, then that's at further risk of not healing also. The feeling is that because the eye has had massive doses of radiotherapy, the eye is not healing as it should do.

Phew again!

No one tells you when your son has cancer at the age of 3 about the emotional turmoil which continues to ravish their lives. On the one hand, we're soooo very thankful he's alive today as that was a very real danger we had to deal with throughout his treatment. But on the other hand, is it wrong for a mother to just want to never see the inside of another treatment room or to have to hold their son's hand so tightly whilst he undergoes his 62nd general anaesthetic in nearly 3 years? I just kind of want him to be left alone and yet, as soon as I write that, I know that as long as he doesn't relapse or succumb to a secondary cancer or tumour, Leo will always be in the medical system. Whether it's the growth hormone or the thyroid issues, or his kidneys, or his eyes or x or y or z .... but at least we have him here with us and we're able to hug and kiss him as much as we want every day. I know other mums whose children have had to fight the battle with cancer again and who are very unlikely to make it, so I shouldn't complain about yet another hospital visit, I know.

Leo's planned scan for the end of April has been scheduled a little earlier than planned and is this Friday so we'll cross our fingers, toes, legs and anything else we can that the MRI shows an unchanged picture to the lump which has been left behind. His usual chest x-ray which again, should have been at the end of April, is also on Friday so this is the one we kind of get more concerned about. We know if it comes back, it's more likely to be in his lungs which is only detectable by an x-ray and no outwardly obvious symptoms - and also if it starts to grow again in his head, we're likely to see some change in his eye again as we did at diagnosis.

As I write this, Leo is still not right from the iron deficiency anaemia he's had since early January. The fabulous thing about our son is that whilst he's missed every morning of school since mid-January, he's keeping up with his classmates with work. A maths test on Friday saw him score full marks despite not being in school for any of the work! Now that's my boy! His daddy was pleased ... being a maths teacher and all!

He'll have his bloods checked again on Friday and so we'll find out if the iron he has twice daily and having any affect on his iron stores. We've been told it can take a good year to develop good iron stores again and as he's still not quite right in terms of energy and appetite, we don't think his blood work will show anything new!

Right, off to bed. It's a new week and lots going on including a Coffee Morning on Tuesday to raise money for Clic Sargent, the children's cancer charity in the UK who do so very much for children just like Leo.

Tomorrow's a new day ...

Eyes Update

2010-12-01T13:46:00.004Z

We met with the eye surgeon who has pretty much ducked all our questions such as would Leo be able to drive in the future (not sure), will his sight improve (not sure, but maybe), is the op risky (yes due to significant risk of infection due to dry eye and need for stitches in his eye), blah blah, blah. We have also been told that all being well with his right eye post-op, the surgeon will plan to do his left eye 3 months afterwards. So the first op is Weds, Jan 5th and then with 'normal' cataract ops, the second eye is done one week later however due to the risks with doing these ops on small, still growing eyes as well as the dry eye problems, they prefer to wait 3 months before scheduling the second eye.

Leo has also fallen down the stairs at school and hurt his leg, but shook him up quite a bit. So much so, he doesn't want to go downstairs at home without someone there as he says it's too blurry. We're not sure whether he just wasn't concentrating at school or whether his perception of depth is altered due to the cataracts.

It appears our initial fears over the lack of answers provided by the surgeon are unfounded - it led us to believe he wasn't sure what he was doing however, it's much more clear having sought out further info, that the surgeon literally cannot tell us if Leo will ever be allowed to drive and all our other fears because he doesn't know. His primary objective is to prevent Leo going blind. Without these operations, that's the absolute end result. So we've no option but to lead Leo back to the hospital in January for his operation - followed by eye drops every 30 minutes, 24/7 for at least a week post-op and then every hour, 24/7 for another week or more so as to try and prevent infection in the eye, which again leads to loss of sight. It's a strange one as normally when you sign a consent form for surgery or a general anaesthetic, as we've done over 70 times for Leo from May 2008, you usually have a fair idea of the outcome and associated risks. We don't in this case so we'll have to literally wait and see.

I also feel bad that I assumed cataracts ops are the same regardless of whether you're in your 80's or a child, however the more I've learned, the more I realise this was a foolish conclusion to come to. Last week we met another surgeon at the Eye Hospital after Leo's right eye swelled up in a similar way to when he was first diagnosed. Turned out it was eczema inside and on the outside of his upper and lower eyelid - which in itself is not an issue and is no reason to prevent the operation in January going ahead, but can slow the healing process and again increase risk of infection. I digress ... this particular surgeon we met said that he would want Leo's surgeon to do any op on his or any of his family if they needed it, and that he has even operated to remove cataracts on a two week old baby.

It was therefore good to meet this doctor despite the circumstances where PJ and I thought we were very much dealing with a relapse. How on earth do we then tell our son of nearly 6 years of age that he'd need to have the meds which make him sick again? I spent the night before we went to the A&E thinking through how we were going to tell our families and the new friends Leo has made at school - and so when the nurse at the Eye Hospital A&E told us to go get some lunch and come back in an hour, we both felt (but didn't tell each other) that they were rounding up the troops! Anyway, it was eczema not cancer so phew! And it would not have been great timing as my Uncle was taken very sick that same weekend so not sure our family could have coped with any more stress or bad news.

Chest x-ray on Monday, Dec 13th with check-up with his oncologist also, followed by three more visits to hospital (egg challenge, eye hospital checks and psychology / play therapy) before the day of his first operation in early January. Then his op and then another head MRI under a general anaesthetic at some point in January, plus weekly eye checks post-op so plenty going on for our brave boy.

Growth Hormone & Cataracts

2010-11-01T12:24:00.004Z

Sorry I've not been around to update of late - lots has been happening.

It's two years to the day that Leo completed chemo. Two whole years.

I think I'd be lying if I said I knew this day would come. Two years ago when Leo completed his chemo by eating a plate of roast potatoes he'd requested on the ward at Bristol Children's Hospital, I never imagined this day in my mind. I could barely think about the next month, never mind seeing his start Year 1 at school 23 months after finishing chemo.

And so Leo is settled into school at Ashton Vale and things have moved on in terms of the treatment he continues to have as a direct result of his cancer treatment. The long list of late effects which his specialists told us about in 2008 are all now apparent, except for the learning disabilities.

He takes thyroxine every morning due to the damage by radiotherapy to his pituitary gland, and his right eye is very dry (again due to radiation) and so he now has eye gel 4 times a day and ointment at night. Leo has grown 2 cms in 2 years so still in age 4 - and he's 6 in January (!!!).

In August this year, Leo started daily injections of growth hormone - it's not the nicest way to start Leo's bedtime routine; however, the injections are starting to have their desired effect.

His appetite is much improved which is a huge relief for us, he is changing shape (although we had his feet checked again today and after 2.5 years at size 27, he is still this size ... so we'll have to wait a little longer to buy a larger size), his jawline is changing away from a toddler's round face to more of a boy's face - and all being well, he could grow some 6-8 cms in the next 10-12 months.

It would be very unfair to say he likes his injections as who would? But he is kind of resigned to it, and Leo does know and sort of accept he has to have his 'Easypod' injections. He can't do the injections himself as the needle is in his skin for a length of time to allow the medicine to go into his muscles - so either PJ or I do them each evening and it is horrible injecting your own child, plus it serves as a daily reminder of what he has had and continues to deal with.

Back in August, Leo was also diagnosed with cataracts and until October, we'd assumed this was purely in his right eye, however we've since learned that he has cataracts in both eyes. He wasn't due to return to the Eye Hospital for 4 months after his summer appointment, but once Leo started school again in September, it soon became very clear that he was struggling.

His teachers as well as PJ and I noticed the problem as we were still having to carry him home (growth hormone had not kicked in so his energy levels were rock bottom after a day at school), he also was becoming adamant that he didn't want to go to school and was finding the new regime very difficult.

Initially, we assumed that the transition from Reception to Year 1 were causing Leo's unease with school. In discussion with other parents, this is what they were saying as their children were taking time to settle in. However, there was just something niggling away in mine and PJ's mind so we requested a meeting with the school's Head. She was very supportive and backed up our fears that Leo was perhaps struggling more than others and had 'changed' from his outgoing self from the previous year. Funnily enough, the afternoon of this meeting saw Leo come home and tell me he couldn't see properly and 'everything is too bright'.

Off went an email to his oncologist as well as a phone call to his eye consultant and we saw them last week. The upshot is the cataract in his right eye is in the middle of his eye and has grown significantly in just 2 months. It was also confirmed he has a cataract in his left eye but it's on the periphery of the outside of his eye and has not developed as quickly as the one in his other eye.

Where does that leave Leo? Well, he's now facing surgery very soon to remove the cataract in his right eye and then glasses for both short and long vision as the lens they replace will only give Leo one fixed point of vision in the distance. As he is so young and small, it's quite likely he will then have to have this lens replaced again in 3-4 years to come - with older people who undergo cataracts surgery, it's rare they have to have another op as they've stopped growing.

Cataracts are very rare in children although some can be born with them (3 in 10,000 children can be born with congenital cataracts). Whilst the first op can be seen as 'standard', not all docs who do cataracts operations in the UK, do them on children! The second op can damage the eye considerably but we'll cross that bridge once it's upon us.

We meet the surgeon on November 17th so we will have some more answers about things then but we do know the forthcoming months will be rather unsettling for Leo as after the op, his sight has to settle down before he can be prescribed with glasses (probably bifocals or one pair of each). He'll therefore not be able to see properly for between 4-8 weeks so not quite sure what this will mean for Leo. At some point in the years to come, he will then go through it again with his left eye.

Don't think people realise that children who survive cancer at Leo's age have to go through so much. His injections for growth hormone will last until he is in his mid-20's or more and the fallout of his eyesight issues can continue as long, if not longer. Having said that, I guess we should be thankful; at least Leo is with us and makes us smile on a daily basis; we were initially told that if he did survive, it's likely he would be blind in his right eye anyway - so I guess we should smile despite all this things.

On a sad note and a real wake up call, two children who had treatment at the same time as Leo, have sadly had to start their battle again - Harry who is undergoing further treatment for Ewing's Sarcoma and also Timmy, whose cancer was very similar to Leo's, and he is battling embryonal rhabdomyosarcoma again. Our thoughts are with their families and we hope all goes well for them.

Thanks for all your support and prayers for Leo, and I will update soon - as soon as we know more about his forthcoming op.

More Disney Pics and Medical Update

2010-06-21T22:57:00.004+01:00

Leo's appointment with the neuro-endocrine people has been brought forward to tomorrow so we await their findings from the Insulin Tolerance Test of two weeks ago. He also endured 3 cannulas in his hands in order to enable to oncology day beds staff to administer a kidney function test. A blood result from a month or so ago, I forget now, showed that his kidney function / urea was not right and we already know his kidney function is damaged from the chemo but it's decreased since the last test about a year ago which is the last time his kidney function was tested.

So the neuro-endocrine test was not too pleasant but the nurses and doctor were fantastic, although very serious, given the circumstances. Essentially the docs administer insulin which made Leo very faint and sweaty and reduced his blood sugar to less than 2, which is why he felt unwell. They then gave him some glucose intravenously, waited for a minute or so, checked his blood sugar again, gave him crisps and strong squash but his blood sugar was not responding - and then gave him some more glucose via the IV to bring his blood sugar up again. Then they check his blood sugar every 5 minutes plus take samples at regular intervals - then finally he was allowed some proper food after the final blood sample....

and so tomorrow, we'll find out what's going on for sure and whether a lifetime regime of growth hormone injections are on the cards.

Leo is doing great with his thyroid tablets and I learned that it's not actually his thyroid which is a problem - it's the messenger signals from the pituitary gland in the brain to the thyroid which is working too hard, hence the thyroid tablets. Make sense? No, nor does it to me some days.

PS. Hope you like the Disney pictures above!

Another Step on the Journey, after our Trip to the USA

2010-06-07T22:28:00.006+01:00

Leo had a clear chest x-ray today and rather relieved. Tolerance test Wednesday to confirm his growth hormone definiciency and then GFR next Tuesday to check what kind of kidney function he has as his last bloods showed they weren't optimal.

So hospital stuff over with....we have returned from what could be called a Dream Holiday - it was all about Leo and what he needed, but was restoring for all three of us. We've returned to the UK with a renewed vigour despite returning to 3 appointments for Leo in the first ten days home.

Pics of the whole Disney part of the trip will be posted as soon as the CD arrives from Disney.

Two Years On...

2010-05-04T09:00:00.000+01:00

It was two years ago to the day that Leo had not only a cancer diagnosis, but a 5 hour operation to put the Hickmann central line in, biopsy the tumour to give formal diagnosis, bone marrow spinal tap and a regime of chemo and radiotherapy ahead of him.

And he's doing great. Loving school, loving life and soooo looking forward to his holiday in a few weeks - not that he knows the details....if only he knew about Give Kids the World and all the Disney treats he has in store! He's excited enough about the 9 hour plane ride, nevermind how he'll be when we start telling him all the details!

I watched a truly inspirational programme about Major Phil Packer this evening which has helped me to put our life into perspective and give me a bit of a kick up the behind. I've needed it as the scare we had over Easter, when we thought the cancer had made a return, has really struck me down emotionally..and physically as I've had neuralgia and a dodgy tummy bug for the past two weeks, which seems to happen when there's been major emotional roller coasters to deal with.

Major Phil Packer was significantly injured on duty for the British Army and yet, his strength of mind has seen him walk again when only 2% would do so given his injuries. This is the man who completed the London Marathon in 14 days in 2009 amd this year, he completed it in just 26 hours with each hour relating to fundraising for a specific charity. The Major's 'thing' is to inspire and he's certainly done that and then some. Here's a man who has taken his new path in life and made it work for him.

This is what we must do. Yes, we do live day to day wondering if the cancer will return although the fear is not as crippling as it was one year ago, so that is good for the future. A letter today from the neuroendocrine specialist has said Leo's thyroid is not working hard enough so he'll need a daily tablet and our GP will sort this out for us. This morning this upset me as it's another 'thing' for Leo to deal with. Tonight, I am just thankful that he's still with us, living, laughing and cancer-free.

Tomorrow is a new day and I cannot wait...

Strange Fortnight

2010-04-11T22:22:00.007+01:00

Very weird fortnight and probably the most stressful since the end of Leo's treatment in Dec 2008. His eye started to swell in a similar way to before he was diagnosed with cancer and so his docs decided to do an MRI which isn't really scheduled for another month or so. It really looks like nothing very much if you look at the picture above but given the speed at which the tumour grew last time, it was crucial we made sure nothing untoward was happening behind Leo's eye to make it swell again. Luckily, and thankfully, nothing is growing again and the tumour bit left behind is behaving and not doing anything which is cause for concern. So we're not sure why his eye is doing this but hey, let's see how it goes.

To say we've had little to no sleep this last two weeks is an understatement but at least we can move on - although now it's a case of working out what's going on with Leo's eye that it's like this. But it's not cancer so that's a huge, huge relief.

I put the other pics on to show what Leo gets up to on the oncology day beds ward at the Bristol Children's Hospital whilst he was waiting for yet another general anaesthetic on Friday. He was even given a lovely certificate for being brave when having his general which is really nice.

We met a new family who have joined our family of those with childhood cancer - a lovely one child family like ours whose son, 7 year old Felix, had his left kidney out 3 weeks ago as he had a Wilms Tumour.

Thankfully the cancer had not spread but Felix has to undergo 6 months chemo to make sure. He has an excellent prognosis with over 98% of children at stage 1 going on to live a full and healthy life which is fantastic.

However my thoughts, feelings and prayers are all with Felix and his mum and dad this week. He had his central line put in whilst we were down having Leo undergo his general for the MRI, and then that central line was going to give him his first dose of vincristine, followed by another ten doses every Friday for the next ten weeks, and then more chemo. It really brought home that fear you have when your son first has chemo pushed into his veins. His parents were completely shell-shocked as you'd imagine and there will little I could say apart from small words of support.

The strange thing was that this family were staying at Clic House where we spent over 3 months at the beginning of this journey - not only that but they were living in room 6 which is the same room we had, so I felt a real affinity with them. It was also the first time we met a family newly-diagnosed since we finished treatment with Leo. All the dread and worry came flooding back and I hope I didn't transfer those emotions to them. We went from thinking the cancer had returned at 12 noon to confirming it hadn't with Leo's oncologist and radiologist at 5pm - phew. But the Felix family were just starting their new life with cancer now a major part of it.

I am sending all my positive vibes in their direction as in the next 10-14 days, Felix's hair will start to fall out in clumps and they enter that whole new world of temperatures, infection, chemo, central lines,bugs, hospitals, chemo, cancer, fear etc etc etc.

More Medical Updates

2010-03-25T13:01:00.004Z

Saw the endocrine specialist Tuesday morning and although Leo has grown 3 cms since last June, it's not enough and his bloods as well as the lack of growth show the doctors that his growth has slowed massively. Due to the following reasons, we're likely to start growth hormone injections every night for the rest of his life;

1. Thyroid seems to be working as his weight has not slowed in terms of growth as much as his height - last time he was on the 9th percentile on the growth chart and now it's not on the chart so under the zero-th percentile, whereas his weight is steady around the 20-25th percentile. Leo had bloods done Tuesday (and was awesome, again watching the needle go into his hand without a squirm or a squeal - very proud).

2. He seems to have developed a pot belly and although we're now buying Leo aged 4 trousers, it's not due to needing the length but needing to have enough room for his tummy!! His specialist says that a pot belly is indicative that his thyroid is fine but his growth hormone is stifled.

3. These two above indicate his thyroid is working (although we'll know for sure once the bloods confirm this) and the two things which could cause you not to grow are thyroid and lack of growth hormone. So if his thyroid is okay, then it's lack of growth hormone and damage to the pituitary gland as a result of the radiotherapy to his brain.

4. Finally, and this bit PJ and I are really confused about, but the wrist x-ray Leo had last June was examined for bone age and his wrist showed that his bones are those of a two year old? Not quite sure how that happens as he was only diagnosed with cancer at aged 3 years, 3 months? So how does one have a bone age of a two year old? Will ask that question next time we see the doc but it was all a bit shocking to hear all these things on Tuesday that you forget to ask the things that you really want answers to because you're busy listening to things you don't want to hear and your brain takes time therefore to process that info.

It's the first appointment in a while that PJ and I feel very tested about because it's all so real now - yes, we should be grateful that Leo does not have cancer any longer and he's not relapsed as yet, but as if having cancer isn't enough, he now has these other issues. Okay, yes, so kids all over have daily injections if they've got diabetes but they're not our children. Leo is our child and it's just heart-breaking that given all he's been through, it doesn't end. And it won't end...

Anyway, Leo is great at having his bloods done and he even reminds us at night for his daily eye cream when at the beginning he hated it...so perhaps after a few weeks of heartache with encouraging Leo that he needs to have this little painful shot, he'll be fine and it'll be the norm!

The next step is a day in the hospital as an in-patient and they'll give him insulin to make him hypo to see what his body does, as this is meant to provoke the body to send out growth hormone - and chemically, if his body doesn't do this, then he'll become poorly, at which point they'll give him glucose to bring him back out of it - and that's the final proof they need that chemically his body does not respond the way it's meant to. After that, we'll start on the road to daily injections of growth hormone.

Eye hospital next week so a good check on his cataract growth so who knows that that'll bring...

Medical Update

2010-03-18T22:34:00.002Z

Sorry for the delay in getting info on the site and also the huge gap between this and our last update.

After 4 weeks of no hospital appointments, we're now back in the realms of plenty of hospital appointments and so the latest was on Monday. Thankfully, Leo's latest cancer check-up has been clear - no cancer in his lungs / chest which is the main worry as that's where it's most likely to return. Leo was once again fantastic having his chest x-ray done and really, truly, could probably get his x-ray done every two months on his own! He knows exactly how to get to the hospital, which floor he needs for his chest x-ray, what he has to do once the radiologist calls him in for his x-ray and then where he needs to go to meet with Dr. Steve for his follow up.

Last week, we did have a few moments where Leo had said he didn't want to go to the hospital but we've managed to allay those fears for now and he behaved very well on Monday.

One aspect did break my heart as the doctor says it's extremely likely Leo will need to start growth hormone treatment very shortly and after a few more tests to confirm this. Basically his feet have not grown since May 2008 when he was diagnosed and his height is going downhill fast on the growth charts doctors are so fond of. He's now 101.7cm and I think he was 98 cm in May 2008 which means very little growth in nearly two years.

The other scary thing therefore is if his pituitary gland has been damaged which means he's not growing properly, it's therefore much more likely that Leo will develop learning disabilities which affect his memory. We have though decided to not go down the route of neurologists just yet as they cannot give us an accurate basis of what Leo's needs will be for a couple more years.

We are however very worried about Leo's nightmares which he has regularly, pretty much every week. I've managed to eventually get to the bottom of what his nightmares are about and one example from last night is that there are 'people trying to kill me' - again, you can imagine PJ and I being rather concerned about what's going on that he consistently is having nightmares about death ... and not just anyone's death but his own. We've never, ever, ever spoken to him about dying - certainly never approached anything about him dying - he was too young to ask if he was going to die when he was on active treatment, but perhaps he's realising how serious things are despite the cancer not returning as yet? He's most certainly very aware that none of the other 23 children in his class miss so much school due to so many hospital appointments.

PJ and I have therefore decided to ask his oncologist to refer him for some help with his thoughts and fears about who he is and what's happened to him so far.

Another example of where Leo's head is right now is something which happened after the hospital on Monday - when we go to the hospital, we usually have to go to the Oncology Day Beds Unit where it's shoved in our faces about how serious things have been, still are and could be more so in the future - children with no hair and that sick cancer stare are pretty much everywhere (or so it feels) when we return to the hospital. I hate going there but would never let Leo know or feel this from me. But on Monday, he said to me he wished Morgan was in his class and when I asked why, he told me it was because Leo was like Morgan (and this wasn't Morgan, the lovely girl in his class ... this was Morgan, with whom he'd played for about 10 minutes whilst I discussed cataracts and growth hormones with his doctor).

So after just 10 minutes of playing with another child who was bald through chemo, Leo felt so comfortable with him, he wished they were in school together! I think it also shows that Leo somehow does not feel connected with most of the children in his class. To look at Leo, you'd never know his history unless you knew why he wears his sunglasses so much (to protect his eyes and also due to the cataract in his right eye causing so much discomfort in daylight).

Despite trying to keep away from any families we met throughout our journey during treatment, purely to protect ourselves from the reminder of what Leo has been through, we know feel that perhaps as Leo grows up, he may need a circle of people and friends around him who really do know exactly, 110% how he feels at any given time ...and we've now realised from his comment on Monday, that he needs to have those friends and associates now.

So we've got in touch with one other family whose son had the same type of cancer at the same time as Leo, but a year older. We'll go meet them on Sunday and God willing, once those boys are 15 years of age, or 25 years old or older (please God...), if they come across things such as job problems, or cataracts problems or not being able to have children - all due to their cancer treatment - they'll be able to talk through their fears and thoughts together, as they'll most likely know more about how the other one feels than we will!!

Tomorrow's a new day and please let Leo have a few nightmare-free nights...please...

Just back from Cornwall

2010-02-22T01:34:00.004Z

Just back from a lovely family break in Cornwall - Leo loved it with all the swimming and playing on the beach at Watergate Bay. He struggled with the sun a lot despite it still being February, but his sunglasses were a constant so no complaining there!

Leo's back to school on Tuesday and looking forward to it, for sure. No appointments coming up although waiting on his hearing test which should be soon (to check it's not been damaged by the chemo although I think Leo is a typical male - listens when he needs to) and I think the kidney test that his oncologist had planned will be done when we see the neuro-endocrine consultant again in March.

Video Time Again plus the Fundraising Has Begun

2010-02-07T00:42:00.003Z

Hope you love this as much as we do - and hope you watched to the end and the lovely wave Leo does from behind the screen at about 4 min 8 seconds into the video! Priceless, I think - but then I am rather biased being blessed as Leo's mother!

We've got through January 2010 with all it's ups and downs of way too many hospital visits but at least Leo's tumour is unchanged so all's good there plus his chest x-ray was unchanged too - will know more about other things such as his eye and growth hormone treatment this and next month in terms of on-going treatment as a result of the chemo and radiotherapy.

Another great news event - we've finally started our fundraising campaign for CLIC Sargent, the fabulous UK children's cancer charity who've certainly not only helped us immensely but I know have helped other families who are having to deal with their child having cancer or leukemia. We've got through 2009 without too many incidents and no sign of the cancer returning, so now we can do out bit to help other families whose children are now very sick and need our help.

Last night, I hosted a very successful Pampered Chef Party here in Bristol and we've raised over £200 with every penny going to CLIC Sargent - final sum is not in just yet but it's a fabulous start!

Thanks to all the lovely ladies who attended which included some of the mums of children in Leo's school class and I do hope they had as good as time as I did.

Just knowing that the money raised will help other families facing up to their child being so sick is very gratifying. CLIC Sargent do an awesome job and supported us not only with a roof over our head when Leo first started his cancer treatment, but also helped Leo understand through play what was happening with the CLIC Sargent Play Specialists who play a vital role in the cancer journey.

Thanks again and come back soon to hear about other fundraising events this year including my bike ride of over 60 miles from London to Oxford at the end of June! Training is already underway...and yes, it hurts!

Musical Delights

2010-01-24T21:01:00.002Z

Need I say more?

Medical Update and other things

2010-01-23T10:57:00.004Z

Leo's most recent MRI and his chest x-ray this month have both been unchanged so we're smiling a-plenty! Now the snow has gone, he's even done lots of days at school in amongst all the hospital visits and we're there again Thursday; this time it's the turn of the neuroendocrine people to decide where we're up to in terms of Leo's growth. Cannot remember for sure but we think he's put on some weight (and is eating brilliantly right now) and we think he's grown about 2-3 cms since last time so fingers crossed they'll decide he's done enough to stay away from the hormone treatment for now. Surely if he's exercising and eating really healthily then we can somehow trick his body into growing and thriving without the need for injections or intervention right now?

Anyway, he's doing brilliantly and was awarded his Little Star Award from Cancer Research UK in front of the school and TV crew last week, and has also been in the local newspaper - we're all very proud and even his school friends gave him a huge round of applause which was lovely. His school are very family friendly and have a family assembly on Fridays and so we took great pleasure in joining the children and other parents in applauding Leo for his bravery.

It's Leo's 5th birthday this Wednesday and this last year has come around actually rather quickly, despite all the stresses which post-treatment brings. I remember this time last year almost being convinced we'd not be fortunate enough to celebrate another birthday with Leo, but he's doing so brilliantly now, that I just think his 6th birthday will be an even bigger celebration.

A Very Very Happy New Year

2010-01-05T21:09:00.004Z

Woo hoo - it's 2010 and we're all still here!

We had a lovely family Christmas and saw lots of friends and extended family over the past two weeks. Some we didn't quite manage to get to see as we've also had a few serious issues with Leo's behaviour. It almost seems that since he's started asking questions about why he's at the hospital what feels like every week, his anger just tips the scales and it then becomes all out war.

PJ and I are thankfully seeing Gail, the therapist we met when Leo was under active treatment at the Bristol Children's Hospital this Thursday. We've also invested in the 1-2-3-Magic book for kids which Leo enjoyed me reading to him - it's a technique normally used for children with ADD / ADHD but we're having some joy.

On a fabulous note, Leo has been awarded the Little Stars Award from Cancer Research UK, not just for his bravery during treatment but for all the time he spends at different hospitals and the on-going treatment he is facing. He is so proud of himself and actually it's given PJ and I the chance to actually say the word 'cancer' to him without it scaring us all to death - sorry, bad choice of words but it really is that scary a word for me personally! The sooner I get over that and treat Leo's tumour as 'cancer' and as part of normality, the better it is for Leo as we do not want him to be frightened of the word either.

So Leo won a silver star, t-shirt which tells all he is a Little Star, a teddy bear with Little Star on it plus £50 to spend! How lucky is he? Well actually, luck has nothing to do with it as to be awarded the Little Star Award, one has to have had cancer!!! Anyway, we're all extremely proud of him indeed and he will be in the newspaper soon to show off his award.

So he's been through alot already and recognised for his bravery; funnily enough Leo has an MRI with a general anaesthetic scheduled again for tomorrow, he had his blood taken (with no tears at all...seriously not one tear) yesterday for the nutritionist to tell us what we can do to ensure Leo is as healthy as possible; he then has yet another chest x-ray, another appointment with the neuro-endocrinology consultant about starting daily growth hormone injections in his stomach, an appointment with the homeopathy consultant and also seeing his oncology consultant for the bi-monthly review - and that's all before the end of January. So when you see it all like that, I'd be a bit peeved and angry if all that was happening to me too!! I dare not look at the diary for February!!

Plus thinking of January's diary entries, Leo is 5 on January 27th and as with all other big events such as Christmas and the turning over of another year from 2009 to 2010, we are forever thankful he is still with us as he approaches his fifth birthday. I know of a brave and wonderful family who lost their precious son over Christmas to cancer and so this really brings home how harsh life can be for our special children. May the Angels look after him and them now and forever.

It's times like this we're thankful to have been able to spend time with my brother, his wife and their simply beautiful daughter Sophie. They were home from Dubai and we were lucky enough to see them twice. The pics say it all.

Thanks for all the cards and best wishes over the Christmas period and warmest best wishes to you for this New Year.

Clear for Two More Months

2009-12-07T09:19:00.002Z

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!

2009-11-29T21:49:00.005Z

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...

2009-11-16T10:29:00.004Z

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

2009-11-08T21:59:00.003Z

One Year Clear

2009-11-02T22:53:00.006Z

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

2009-10-23T12:21:00.004+01:00

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!

2009-10-09T14:58:00.003+01:00

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!

2009-09-23T22:50:00.003+01:00

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

2009-09-21T23:15:00.002+01:00

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

2009-09-14T12:38:00.005+01:00

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

2009-09-13T22:57:00.003+01:00

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?

2009-08-23T01:53:00.001+01:00

Frustrating Week

2009-08-22T12:49:00.003+01:00

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...

2009-08-16T22:11:00.004+01:00

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

2009-08-04T23:17:00.002+01:00

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...

2009-08-03T18:29:00.002+01:00

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

2009-07-31T20:54:00.002+01:00

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

2009-07-22T23:05:00.006+01:00

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

2009-06-29T13:42:00.003+01:00

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

2009-06-07T18:13:00.004+01:00

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...

2009-05-20T22:55:00.002+01:00

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

2009-05-08T21:48:00.002+01:00

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

2009-05-03T11:23:00.003+01:00

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

2009-04-23T23:51:00.003+01:00

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

2009-04-16T21:02:00.003+01:00

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

2009-04-13T20:43:00.003+01:00

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

2009-04-10T22:34:00.002+01:00

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

2009-04-04T21:32:00.004+01:00

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

2009-03-31T00:50:00.005+01:00

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...

2009-03-25T20:43:00.003Z

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)

2009-03-19T20:07:00.005Z

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?

2009-03-10T22:41:00.005Z

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

2009-03-08T23:51:00.000Z

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?

2009-03-07T21:12:00.003Z

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

2009-03-04T17:52:00.002Z

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!

2009-03-01T23:10:00.001Z

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

2009-02-27T21:28:00.002Z

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

2009-02-24T12:03:00.004Z

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'

2009-02-23T19:23:00.001Z

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?

2009-02-18T00:10:00.002Z

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

2009-02-15T20:32:00.002Z

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...

Feeling Better...and More Hair

2009-02-10T11:51:00.001Z

10 Pounds Lighter...

2009-02-09T16:08:00.003Z

For a boy on the small side anyway, losing 10 lbs in weight in just two weeks is alot, and so we're now on a mission to fatten Leo up again. He's feeling much more like his old self and finishes his antibiotics tomorrow which is good - to think we worried about giving him oral drugs and yet after a few fights to begin with, once he realised that he'd have to go back to stay at the hospital if he didn't take the meds, he soon took them.

Leo went back to school today and was so excited about being back with his friends which is so nice to see as he's so sociable as I am sure those who remember him from King's College will remember. Plus his appetite is back which is promising so we've no need to worry too much about his weight loss!

Amazing how turning 4 years of age, and Leo seems to be a bit more grown up also. He's certainly more responsible but with that comes an increasing amount of cheekiness!

Thanks to you all for sending cards and gifts and coming to his party, especially those who travelled miles and miles to make it (Lisa Green and family, my parents and Tessa et al)! I am yet to write the thank you cards due to events of the past two weeks so this week, I'll be able to get my head down and sort things out! Thanks again.

Love from Helen, PJ and Leo x

I'm Gonna Be A Rock Star

2009-02-05T23:25:00.004Z

Someone's feeling better. Leo's temperature is still going up and down, but he's managing to eat a little and drink more, but the main thing is he's decided today that he'd like to be a rock star when he grows up. So a few weeks ago it was 'I'm going to dance on the stage, but not at the theatre like girls...' and now he has his sights set on being a rock star! Fantastic!

Scan as normal in about ten days so we'll see what that holds. Leo's eye lid does seem a little swollen and more so than yesterday but maybe because I am with him all day, every day, I may be 'seeing' things... Who knows?

Stressed...Me?

2009-02-03T22:37:00.002Z

So another visit and overnight stay in isolation on the ward at the hospital. Leo's quite poorly with a bacterial infection in his sinuses, throat and nose which for a 'normal' child would mean a week's antibiotics. For Leo, the concern is the infection could track back to the part behind his eye where the left-over mass is from his cancer. If this happens, it could mean IV antibiotics in isolation on the ward for maybe three weeks. Stressed...me? Never!

His weight has dropped from 16.1 kg to 14.7 kg in one week or less, and whilst he's had a little yogurt and jelly today, he's had little else. Hopefully being back home will help him feel a little better and also not being fussed over by the nurses and a wide variety of specialists from medical, oncology and ENT teams.

Good news is his chest x-ray was clear today and we are only thinking that it's a severe infection...no relapse or recurrence of the cancer. Doesn't stop you worrying about it though!

Rational versus Paranoid Mind...

2009-02-02T11:11:00.004Z

This is our 'normality' now...rational versus paranoid thoughts. A 4 year old with a temperature of over 40 for a few days and you keep them home, load them with Calpol and know the lurgy will pass after a few days and if not, head to the GP.

Well, after the GP told me that 'there was no need to be so paranoid' ten days ago, I've been desperately trying to remember how to look at issues like high temperatures, pre-cancer. It's difficult though as your rational mind goes out the window. Your rational mind says it's just a cold. A bad cold or even flu but it's all normal. Rational mind, rational outcome.

But then the temperature stays within 39 and 40 even with Calpol, plus Leo stops drinking and eating, and then starts 'trying' to sleep 24 hours a day...and then the paranoid mind comes out and has a field day! Could it be the tumour has re-triggered and causing problems in his ear, or sinuses or around his eye? Could the cold / flu symptoms be masking a relapse? If we listen to just the normal symptoms presenting themselves, will we miss a relapse or will we miss it for too long? Although if he relapses, there's nothing can be done anyway...and then your head gets all mixed up with those thoughts....

Leo's Clic Nurse has been awesome and said even a 'normal' child would be taken to the emergency room if they had a temp of over 40 for 3 or 4 days, and so on Friday, that's where we found ourselves.

Leo's birthday party was on Saturday and so Calpol and adrenalin got him through it but you could tell he wasn't right as he didn't dance (where he'd normally steal the show on the dance floor) and was very clingy.

And now it's Monday and his temp is still above 39 and now he's had a few nose-bleeds and not really slept properly for days because he's so hot. The barometer for the start of a cold or something else before Leo had cancer was if he went off his milk. Well he's not had any milk for days. He asks for it and he's currently lying on the chair with milk, smoothie and water available in three different cups and he's just not interested.

So we're just waiting on Leo's oncologist to come back to us as his Clic Nurse is speaking with him today.

And so this is what is meant by the 'new' normal life we have to get through. Post-treatment is certainly much more scary as the potential for the cancer to do more damage to Leo and our lives is there, hanging over us all, like some massive black cloud.

And before anyone says that we have to just get on with things...just knuckle down and get back to work and carry on as though Leo's never had cancer, well that's just unrealistic and is not going to happen.

Not just now anyway.

I could not go and get a full-time job regardless of the increased income it wold bring with it. I could not sit in an interview with a potential new employer and give them the whole spiel as my heart would not be in it at all. I am 150% wanting to me Leo's full-time mum right now and if that means I cannot work, then hey, the income will have to wait. After all, what's the point in having more cash if Leo's not well??? Won't help if his cancer decides to make a return.

Happy 4th Birhday, Leo

2009-01-27T10:03:00.002Z

Allow me to Introduce Leo with...

2009-01-25T11:39:00.002Z

Hair! And Batman Leo!!!

Leo is in good form. At nursery school every day and loving it.

He had his eyes checked again on Thursday and the vision in his right eye is worse than last time and probably more of an accurate check as he's much more cooperative with what he has to do.

Keeping an eye on what Leo says is his bad ear (he points and says it hurts all the way inside) and then says his brain hurts! Perfect - just the right things to tell worrying parents, eh!!!!!

MRI booked for 3 weeks and then a further check with his oncology consultant again one week after that.

Leo's 4th Birthday on Tuesday and we cannot wait!

Less than a Week Until Leo's 4th Birthday

2009-01-21T13:36:00.003Z

Who'd have thought this time a year ago we were planning a joint party with one of the nice families we knew in Spain for Leo's 3rd birthday and Joseph's 7th birthday. It was outside in the garden, blue skies, sunshine, bouncy castle and lots of fun indeed. One year on and we're not sure if this will be the last of Leo's birthdays which we will be celebrating. I am not being morbid or depressed about it...this is a fact. And as such, where we would normally just hope everything goes to plan, this year we're pulling all the stops out and desperate that Leo enjoys himself, whilst we also take time to appreciate him and all that he gives us as our son. Life is too short after all!!

We've heard back from the cancer consultant who in a very technical way has said that we should not read too much into the increased egg allergy, but that also there's only Leo with this cancer in this site at his age, in the world, and as such, little is really known about the chemo he's had on his specific cancer.

Tomorrow brings more hospital visits. This time his right eye is going to be checked and we're rather hoping that they do the tests they usually do at the end, right at the beginning instead of waiting through an hour or more of testing before checking his cataract / light sensitivity. It may well be that they'll decide to check the cataracts and back of his eye the next time he has a general anaesthetic which will be on or near February 17th for his next MRI.

His teachers at school have all made a point this week of saying that Leo really has come out of himself post-Christmas and that he's a pleasure to have in school. Similar statements were made when Leo was at King's College in Murcia and so it's nice to know that others mirror our feelings that the Leo we knew pre-cancer is now back, albeit a little older, wiser and somewhat institutionalised.

Unexpected Stress

2009-01-19T09:50:00.002Z

We were at the hospital on Friday, primarily to have an appointment about Leo's mould allergy and his other allergies. Whilst there we had a meeting with his oncologist too who advised Leo now needs chest x-rays every other month. This is because if he relapses, it may not be in the primary site i.e. on the brain. It could relapse in his lungs. So a little surprise and actually with hindsight quite pleased we did not know this before as it's another major thing to stress about.

As it happens Leo's chest x-ray was clear so he's not relapsed yet.

His allergies though a little cause for concern as normally people who have had their immune system 'modulated' with chemotherapy and especially the type and amount that Leo has had, the tests for his allergies would give a 'false' low at this point post-treatment. However his allergy to eggs has increased whereas chemo normally 'resets' the system and the egg allergy usually disappears. So not quite sure if we should be reading into the fact the chemo didn't knock the egg allergy out of his system and the fact it's got worse. At Leo's age, cancer aside, it's highly unlikely he's going to grow out of his egg allergy now.

So just to see what his oncologist comes back with in terms of the chemo / allergy testing / false high debate?

Today's a new day...no time for stress.....

First Hospital Visit of 2009

2009-01-16T09:07:00.002Z

This afternoon sees us meeting with one of Leo's specialists from over a year ago in relation to his allergies as he's allergic to tree nuts, seeds, eggs and mould (the black stuff which can form round the bath or under a pile of leaves in autumn). He's already up to speed with Leo's cancer diagnosis as the chemotherapy can have an impact on his allergies so it will be interesting to see what his immune system is doing now give the level of chemo his body has been through. We hope to also see his oncology consultant and his favourite Clic nurse Sarah as we've not seen her for weeks either.

Leo has done four sessions at nursery this week and off to his fifth today. We've also been swimming and tomorrow we're off to a panto in Bath, which is Leo's favourite story of Jack and the Beanstalk. Weekends have become so precious again now PJ is working and we're living a new normal life.

Doing Good

2009-01-12T23:06:00.003Z

Even more normality with more swimming today, more school (for both PJ and Leo!) and catching up with Leo's Clic Sargent nurse.

In fact, we're so much into normality that Leo's swimming today was nearly as though he has always been swimming...nearly as though there was no gap between last April in Spain and today in a warm-ish indoor pool in the UK. I think we kind of forget that whilst our children undergo such major treatment for cancer, they still grow up.

They still go from being a 3 year 3 month old and now he's 3 weeks from being a lovely 4 year old, and what's got him to this point is normality, as well as the chemo, antibiotics, blood transfusions, general anaesthetics and radiotherapy. He is who he is because of all this as well as what he should be..if that makes sense?

Anyway, another day tomorrow. More school, more playing, no hospital..not for another week or so, and yet there'll no doubt be some pretend playing doctors and nurses with central lines and blood pressure being checked!

Wet Wet Wet

2009-01-11T09:46:00.002Z

Finally, Leo has been able to do what he wanted to do as soon as his wigglies came out on Dec 23rd..we've been swimming and he absolutely loved it. We shouldn't be surprised as Leo was always a water baby whilst we lived in Spain and even before we went there, so we'll look to go swimming as much as possible in the weeks to come.

He's also been back at nursery school although was so tired he couldn't eat on Thursday so I kept him at home and we just chilled out a bit. Perhaps we were being a bit optimistic if we thought he'd just slot back in to five days a week. But a few hours each day and he's good for it. It means he still has enough energy to do other things like soft-play or swimming.

As the month goes by, we know a few other children who are finishing treatment this month so our hearts go out to them. Others are having their Hickmann lines out as they finished treatment a little while ago and it takes time to get a slot on the surgery list.

As for Leo, we're back at the hospital for an eye check-up which is very important given he keeps his eye shut now in the mornings for about an hour or so. After that, we have an MRI coming up too and another consultation with his oncologist who has emailed this week to see how Leo's doing.

Whilst it may be that Leo's treatment has finished, it's very true to say that this is the tricky bit now. During treatment, the cancer is essentially being 'treated', or at least you hope so and now, post-treatment, it's left to its own devices; life could be described as a waiting game. The next five years consists of waiting to see what happens. This could be construed as being quite negative or it could be seen as a positive because at the moment whatever makes up the lump of 'stuff' left behind after treatment is behaving so no worries. It also means that this 'waiting game' makes us grab life and get on with it. We're definitely doing more these days.

Our next task is to think about how we can fundraise for a real need at the hospitals where Leo's been treated or directly for the children being treated as well as a reserve for any further more experimental treatment Leo may require should he relapse.

Pictures = Thousand Words

2009-01-05T19:48:00.004Z

Leo wanted to have eyebrows and eyelashes for Christmas...unusual request for a 3 year old and the photo may not show the lashes and brows BUT hey, how much hair has he got? He has been so happy today in so many ways. He's been the school for a whole 5 hours and loved every minute. His teachers have also commented on how well Leo is looking and how sociable and responsible he is with all the children. Amazing!

He has also had the longest bath in history and really enjoyed it as I bought some goggles for him as we're now able to go swimming now his chest has healed from his central line.

And he's also back in his own bed and even let me come back downstairs before he fell asleep! Woo hoo! Normality is upon us and with slight trepidation that at some point in the future, our new normality it will be upset again, we're going to grab our life by the horns.

Plus PJ had a good first day at school...work!

All in all, a good day.

Normality Resumes / Starts Tomorrow

2009-01-04T18:30:00.003Z

And so the new year is upon us and along with it comes normality. With Leo's energy levels now going through the roof, we think he is making up for lost time. It's almost as though he's eating and running about not just for now, but to make up for the months and months of chemo and radiotherapy last year.

We had planned to have Leo increase his time at nursery school to four 5-hour sessions per week but with his energy as it now is and our need for increased income, we'll explore a few more sessions each week very soon and then with PJ working full-time, I can then invest the time Leo's at school in building my businesses again.

Normality resumes tomorrow...here's hoping it stays that way for the foreseeable future...

Tomorrow is a new day in more ways than one, and we're all looking forward to it.

Happy 2009

2009-01-03T11:36:00.003Z

Just back from Scotland where we've spent a week at the amazing Malcolm Sargent House in Prestwick. When we were told the house was on the beach and on a links golf course, we never could have believed it was really actually right on the beach and our bedroom looked out over the golf course, much to PJ's happiness.

Leo is doing great. His appetite is back with a vengeance and his hair is also growing rather quickly. Whilst his hair looks dark at the moment, it may end up curly and ginger first of all, before finding it's colour again. This often happens after chemo and we spoke with many families this last week, with whom we had the pleasure of meeting and sharing experiences with. A really fantastic way of spending the New Year week as we were all able to be ourselves and not worry if we were emotional or whatever during the course of the week.

The turning of the New Year has always had alot of significance for PJ and I as it's a time when we put the previous year behind us and plan some scheme for the following year. Well this year, the scheming has been taken out of our control for the first time, so no moving abroad, no hair-brained plan to invest lots of cash in risky businesses; this year it's all about trying to gain control of a somewhat normal life and give Leo an amazing life. Our focus has changed a little due to Leo's cancer as we used to take more risks, but now we need to settle down and enjoy different experiences to enrich Leo's and our lives in more ways than usual. Shame it takes your only child to have a life-threatening illness to focus your mind?!

Photos to follow...

Happy New Year one and all.

Christmas 2008

2008-12-24T23:00:00.006Z

Hope you have a good Christmas and enjoy yourselves surrounded by people who care about you; after all, isn't that what we all want at this time of year?

We let Leo open some presents yesterday after his operation and so he opened the gifts which arrived from his friends in Spain. The picture above is the only one Leo would let me take this evening; he is all dressed up as Sporticus from Lazytown; an outfit sent over by Dawn, Terry, Neva and Lexi. And Leo's energy is just about the same as this cartoon character's now he's feeling a bit better and all the chemo is out of his system.

Same could not be said for today as Leo's chest is very sore where his line was taken out. It has been there since July so the tissue which grows around it can cause it to be very sore when they take it out. So after a brief play at a new soft play place nearby, where Leo took great pleasure in sliding down the slides on his tummy and chest, it was home for a grumpy afternoon. The fact that Father Christmas may be making an appearance overnight has kept him going this evening, but Leo is your typical male of the species...just because you can take pain-killers, does not mean you have to...even if you're in lots of pain!!

Hopefully he'll be feeling a bit better tomorrow and no doubt more presents are going to help.

Merry Christmas

BIG Day, and not because Santa visits in 2 days!

2008-12-23T23:19:00.002Z

It's been a big, big, big day today as Leo has had his central line removed!! Woo hoo!

Such a huge factor in life returning to a new normality. Apart from the fact that it meant more surgery and another general anaesthetic for Leo, it brings to a close a strange and very, very challenging year.

At least now, Leo can start to feel like any other child; his hair is growing back, and although he told someone today he'd like eyelashes and eyebrows for Christmas, they're growing back also. He should be asking for toys and games, not hair!! But with hope, today will be the last time we have to visit the hospital until February, when the next MRI scan is planned.

Timing is a funny thing as we spent last Christmas here in the UK and vowed to try to spend more Christmas's in sunnier climes such as Spain due to the bad weather here. But this Christmas, although it's cold and damp, we're thankful to have been here in the UK when Leo was diagnosed and thankful that we can call on the NHS and the excellent Clic Sargent community nursing team if we're at all concerned.

So two days to Christmas 2008 and so much has happened since last Christmas.

Moving countries, moving house, being homeless and being fortunate enough to be able to live at Clic House in Bristol, my operation which included an hysterectomy and bowel surgery and oh, that small thing called cancer!

Who'd have thought it, eh? Doesn't this kind of thing always happen to someone else's child who you read about in magazines or newspapers? You never actually think it'll happen to your only child.

But it has and he's through the treatment and now we press on.

Life will never be the same again but in some ways, this is a positive. Whilst we'd prefer to be living our lives in Spain and enjoying our friendships which were developing there, our lives have taken a different twist and unless we embrace it, we cannot and will not move forward.

Who knows what is going to be happening this time next year but our prayers are constantly asking that Leo be with us in 12 months time. This cannot be his last Christmas.

I have a feeling 2009's New Year's Resolutions may be rather on the large side!! We've some time for reflection between now and then though as PJ, Leo and I are off to Ayr in Scotland to spend time at Clic House which will allow us to not feel guilty about our emotions and feelings during the New Year period. We didn't want to feel we were upsetting or disrupting other people's New Year celebrations by spending time with our friends in and around Bristol in the UK, and so we're taking the opportunity to meet and spend time with families and children who know where we're at, and who knows, we may even be able to give hope and support to other families who are going along this rollercoaster of a journery called childhood cancer.

Thank you once again for all your support and please know that if I could jump on a plane to everyone and give hugs and kisses all round, then I would! And Leo would not be far behind me...he's in a very tactile place right now so you would not get away without strong hugs from a boy who is getting stronger daily.

Thank you once again, and may your Christmas and New Year celebrations be filled with joy, health and much love.

Thank You All and to Disneyland Paris

2008-12-20T10:42:00.003Z

So you could say that Leo was a little frightened of the characters at Disneyland Paris but all in all, we had a most fabulous time. Leo's face was a picture (when the characters were not around!) We also were treated so well by Disneyland as Leo was given a special blue badge which meant no queuing for anything, so no queues for breakfast, no queues for any rides, special after-show photo opportunities and generally treated like VIPs...which was lovely, but then every now and then, just when you think how lucky you are at all this fabulous treatment, you then also realise the reason why. If we could trade queuing for each ride for the reason why Leo had the blue badge, we'd do it in an instant!

Thank you for your contributions which went a long way towards making sure Leo had the experience of a lifetime. He and we really appreciate all you've done and have returned home, refreshed and awaiting a lovely Christmas and New Year.

Hands Up Who's Off to Disney Tomorrow?

2008-12-14T21:35:00.007Z

Leo, Leo, Leo! He is so excited...oh, and by the way, so are PJ and I! Disneyland tomorrow but this a picture of Leo yesterday at our friend's daughter's first birthday party. If Leo had a full head of hair, you'd have thought he was just another normal child with no worries in the world. And actually if you look very, very, very carefully his hair is certainly growing back and his eyebrows and eyelashes are most certainly back! The most lovely thing though is that now when he smiles, you really feel like he is smiling, not just trying to be brave. His eyes are really smiling, not just his mouth. He is starting to be a happy, little boy again.

And so tomorrow, we're off to Disney and I think I am actually more excited about the thought of seeing Leo (and PJ's) face when we walk through the gates and into Main Street for the first time. And how about the first time Leo sees Mickey Mouse, Pluto, Goofey and Buzz Lightyear!! Will certainly be taking sleeping tablets tonight.

Leo's managed to suppress how excited he is and he's already in bed, asleep on a lovely, full tummy. Finally, both today and yesterday, he has eaten what would be considered a 'normal' amount of food for a boy his age...and that's the first time we can say he's eaten consistently for two consecutive days since the beginning of August; over four months. So fingers crossed we have got the eating thing down!

Leo's Favourite Nurse, Sarah - Thank You Clic Sargent

2008-12-10T21:02:00.010Z

This is Leo this afternoon, with his most favourite nurse in the world - Sarah has become a firm favourite and is the weekly Clic Sargent community nurse who keeps in touch, liaises with the hospital in-between our visits, answers all our mundane questions which she has no doubt been asked a million times, does Leo's weekly blood tests and flushing his central line, trained me how to flush and care for his line as well as played with Leo, kept him happy when we can't (or feel like we can't) and is generally just an amazing person who has helped all three of us through some tricky times.

As this photo clearly shows, Leo adores Sarah and although his line is coming out soon, she does keep in touch and there's some continuity with her as this next year may throw up all sorts of things which she can help with.

For those who raised all that cash in Spain as part of the King's College / Polaris World Fundraising events back in November, your contributions to Clic Sargent helps to pay for nurses just like Sarah to help children like Leo and families just like ours.

One final update, unfortunately the operation to remove Leo's central line has been put back to the day before Christmas Eve which does mean that Leo will be sore for a few days, but no doubt a few presents from Father Christmas will help take his mind off things!

GRIM ... and Grimmer

2008-12-07T23:40:00.007Z

Not the best English grammar but the best way to describe today...GRIM for my cousin Nicola - check out those pictures!!! Makes me cold just looking at them. By the way, that's not steam coming off lovely warm bath water... that's freezing cold muddy, yukky water. There's 8 miles of massive puddles (or lakes) of cold water like that, add in some minus degree overnight weather plus ice around the edges of the water, and what do you get? A fab fundraising effort and all for our lovely, brave son.

Thank you Nicola, for your sacrifice in all the training and also for organising such a unique fundraiser, and doing it regardless of the cold you've had. Leo, PJ and I are most appreciative to you for all your efforts and for helping us enable Leo to finish this year on a high after so many, many lows. Disneyland, Paris, here we come, and thanks Nicola so very much for all your efforts. And thanks for smiling in the pictures; you're very brave too and hope you warmed up quite quickly as the day went on.

So that was the GRIM; how about the 'grimmer'? How does trapping your finger in a fire door right by the hinges and having to endure yet another trip to the Bristol Children's Hospital A&E department sound? More X-rays and more pain-killers, and despite our initial fears that Leo had maybe fractured his finger or even had an open break due to the way his finger was, a big bandage later and all was well. We left the hospital and were able to make it to the lunch organised to congratulate Nicola on her own GRIM adventure and also meet with some other cousins including Donna and Regina, who has come over from Ireland to spend some time with us.

Thanks again for all your fundraising efforts and contributions from both sides of our families and our friends both here and in Spain. Please get in touch with Nicola nkdale@hotmail.com with regards to contributing or settling your pledges!

Leo is very special (yes, I am extremely biased), but he's been such a brave boy and so this trip to Disneyland will really help him to relax and enjoy life. Please know we are all so grateful to have tremendous support from all corners of the globe which is testament to just how special Leo is!!

Celebration Video 2008

2008-12-06T23:07:00.006Z

Been tinkering whilst watching the X Factor Semi-Finals this evening and wanted to put together a nice, happy, fulfilling and essentially uplifting video of Leo. He's coming on leaps and bounds and doing brilliantly this week. His behaviour is returning to normal with fewer and fewer set-days at the various hospitals. He is also able to tell us how he is feeling which not only makes PJ and I feel better, but also helps lighten the load for him.

So enjoy this little video by clicking on the picture below of Leo playing merrily on the beach at Los Alcazares in Murcia back in April and of course, due to the issue with comments on here i.e. I cannot seem to find them once people post them after taking them off due to the personal nature, please, please do feel free to post your comments on the video site.

Thanks again for all your help and support; it's helped more than we could ever portray by words, photos or videos.

Off to support my cousin Nicola in the GRIM Challenge tomorrow and just to give you an idea...it's minus 2 outside as we speak so the course will be somewhat challenging!

Photos and video (I hope) to follow.

Thanks to all for your sponsorship; you've made it possible for Disney to be a real possibility for Leo this year and ahead of Christmas...it's just 8 days until we stroll up Main Street, Disneyland Paris and who knows how far away this whole cancer thing will feel then.

In a way, I am pleased we had that relapse scare a few weeks ago (with a massive dose of hindsight), as it means we're going this year and not waiting and waiting and waiting. We always seem to put things off until there may be a better time but hey, when it comes to living, there's no time like the present!

Merry Xmas 2008

Our New Normal

2008-12-06T00:01:00.003Z

So a week of stomach bugs, coughs, colds, rubbish weather, more trips to the hospital and all those other normal things of winter life in the UK...and life really does feel like it's returning to normal; well, a new sort of normal! Things will be even more normal when PJ starts his new job in January, as well as work for me and perhaps Leo will do four mornings at school instead of three afternoons.

Something else which is normal..well, relatively...is Leo's eye-sight. He attended the Eye Hospital again yesterday and he was in the mood to co-operate and as such, we've ascertained his left eye (the good one) is spot on for his age and the right one is nearly there too. So what's causing the squint and light-sensitivity? Well, probably cataracts! Which is no surprise of course, as we always knew that he would be a candidate for cataracts due to the radiotherapy, and to be honest, PJ and I were kind of quite relieved. Parents relieved their son only has cataracts..well, that's today's reality. This is normal for a child who has been through what his body has been put through.

The next step is that Leo's Hickmann line should be taken out under another general anaesthetic (his 35th this year) and the date at the moment is next Friday, December 12th. Of course, it may not happen if emergency surgery is required on other children. It'll be great if they take it out next Friday as it's another step towards normality plus we can start going swimming again about 2-3 weeks once it's been removed! Woo hoo! Leo was just starting to get to grips with swimming in Spain with his friends Jack, Saul, Neva and Lexi on regular jaunts to Jack's house and their lovely hated outdoor pool. Gosh, how long ago does that feel now??? It was April when Leo last went swimming and jumped like Buzz Lightyear into Marie, Jack and Craig's pool!

Here's to those lovely sunshine-filled days and here's to a 'normal' future. Our new normal, that is!

Boogie

2008-11-30T20:22:00.005Z

Leo's always had great taste in music and so this time, it's a little boogie to Take That!

Been to the Pictures

2008-11-30T19:55:00.002Z

Today brought Leo's first trip to the cinema ever and he just loved it! We watched Madagascar 2 and our good friends Mel and Shaun joined us, along with Leo's friend and their son Charlie, plus my sister Denise and her friend Rosie. A lovely time was had by all. Mel had even done homemade popcorn which Leo tucked into, kind of! Apart from half a bowl of spag bollast night, it's the only food he's had this week. So we'll be having a conversation again this week, with the doctors and dietitican to see if we can be doing something more to get nutrition into him.

They All Want to Kiss Me!!!

2008-11-25T21:58:00.004Z

Leo has had a slightly better day in terms of eating and whilst it hurts me to say he cannot drink milk unless he eats his breakfast, it's for his own good!

Having said all that, when I collected him from school this evening he did say his favourite part of the afternoon was eating his lunch of bread and jam, so we're making headway.

He also played properly with some other children for the first time, instead of just relying upon the teachers who are lovely. I asked him whether he plays with the girls as well as the boys and he answered..'urgh, I can't play with girls Mummy, they all want to kiss me!' Get him!! Thinks all the girls like him! Cheeky so-and-so.

Have had to rearrange our oncology consultant's meeting tomorrow as PJ has another job interview and so perhaps we'll touch base next week. We also see Leo's eye docs again on Thursday afternoon.

Not long now until my cousins put themselves through miles of mud, cold weather, perhaps even rain knowing the weather here in the UK in the GRIM Challenge on Sunday Dec 8th. They're raising money for our forthcoming trip to Disneyland in Paris as well as any future treatment Leo will need, plus a legacy fund for Clic Sargent and the Paediatric Oncology Ward at the Bristol Children's Hospital. During the past two weeks of not knowing whether Leo's already relapsed, we took the step to book a trip to Disneyland as the last two weeks have really emphasised that we never know what's around the corner.

So on Dec 15th, we are taking Leo on a lovely trip to Disneyland and he's one happy chap.

After all the medicines, chemotherapy, radiotherapy, hospital visits, general anaesthetics (about 40), central lines, central line dressing changes, weekly blood tests, five blood transfusions, we think the trip will be an awesome way to celebrate life together. Hopping, skipping and jumping down Main Street Disneyland is something we're all looking forward to and seeing Leo's excited, happy, smiling face when he finally sees Mickey Mouse and Buzz Lightyear for real will be a dream come true.

It's an old cliche but the words thank you are not enough; thanks to all of you who have contributed to the fund. Words can literally not express how thankful we are, but let me assure you that the photos of Leo smiling away in Disney will easily illustrate the difference you've made to our son's life. They'll be here on the blog as soon as we return as a way of saing thanks.

Keep On Keeping On

2008-11-24T20:48:00.002Z

Another week has past and things are starting to settle down. Leo's temperature has finally become normal on a consistent basis so that's good. His eating has slightly improved in that he is actually eating little bits and pieces from time to time. His cold is still lingering but then it is the season for it. And he's been to school a few times and enjoyed it each time. The eyelid droop is no worse so that's promising and may point to 'just' radiotherapy late effects as opposed to a relapse, but with more tests this week, we will keep on keeping just about everything crossed.

I Know Nothing...Kind of!

2008-11-19T17:57:00.002Z

Still no answers either way as to whether Leo has relapsed. His eye sight is worse than it was 6 weeks ago, and so is a cause for concern. As is the eyelid droop which is worse than 3 weeks ago. Both things could point to a relapse but noone is pointing us in that direction until they know for sure, which would be if a scan then shows the mass left behind growing or changing shape. We're back at the Eye Hospital again tomorrow to see if we can do another eye sight test and take a look at the back of his right eye and see if it's damage to the eye itself, or behind the eye and thus tumour related.

And so onwards we go...

Neither Here Nor There

2008-11-17T23:38:00.005Z

Leo was so good at the hospital today and fine about going tomorrow also, but probably because he knows he is going to school again as soon as we're done with the doctors. It's weird but all of a sudden, he seems to have grown up a little. His sentences are better formed, his speech much clearer and every now and then, he absolutely sounds like an adult!

Leo's MRI was today and it's the first one since he's finished treatment. If he had not had one planned, then the doctors would have ordered one anyway to find out why his eyelid is drooping, and why he is squinting and pointing at distances.

So the result of the MRI is neither here nor there, although we had no real commitment from his doctor as to what we or he should have expected. The initial MRI after 5 sessions of chemo and prior to Leo starting radiotherapy showed a reduction of the mass on his brain and behind his eye by about 50%. His doc was pleased with that, and his words and body language showed this at the time.

Today was a different story as the MRI showed no changes in shape or size of the mass from the MRI scan done in July. No clear answers were given about whether this was expected, good, bad or ugly; although he did request a swift radiologist review of the scans which illustrates he takes our concerns seriously, as we were not meant to have any results before next week's clinic appointment.

We've always known that the tumour was inoperable due to where it is in Leo's head, and so we've always known that there would be some mass left behind. We can only guess and fear what that mass actually is; it could be dead matter / dead cancer cells, live cancer cells, dormant cancer cells and / or scar tissue, or a combination of all of the above. But to say that both PJ and I are surprised the mass has not reduced even a slight amount again after such intensive radiotherapy and four further chemotherapy treatments, we're disappointed and a little lost. I guess our expectation was that it would reduce further and leave behind scar tissue. However it's exactly the same.

The one positive is that it's not grown at this stage but then that would be highly unlikely given he's only just finished chemo etc.

Upon asking the docs what we should look for in terms of relapse, unfortunately the symptoms are exactly what Leo has developed over a short time, these past few weeks; eyelid droop, squint and double vision (pointing whilst squinting could be indicative of this). So the scan did not show relapse right now, but sometimes symptoms show relapse ahead of scans.

This therefore means we're in the hands of the eye doctors on Wednesday right now; they will hopefully know how to test what is going on with Leo's right eye. It may be that there minute cancer cells which have either never been killed or have decided to already re-ignite and are causing a few problems on his optic nerve, and so will only show on an MRI in a few weeks. Or it could be something else...what that is, we don't know. But we're meeting with his oncology consultant again on Thursday once we've had some more tests and info from the eye specialists.

Urgh. Patience is a virtue but unfortunately not something I have ever been blessed with. Not knowing is not a good place to be, but we need to get used to it. The ups and downs of life will now be governed by the in-betweens from doctor's appointment to doctor's appointment and the next MRI scan. In a way, it's good to know we can somehow protect Leo from this fear and worry as he can settle into school and be as normal a child as possible i.e. play, learn, live and love. It's our duty as his parents to ensure we protect him from our fears; if we ever knew he felt as scared as us, I think he'd be nearly as paralysed as we are from time to time.

People keep telling us we're doing a great job and that they could never do what we're doing. Well, let me set the record straight. You can only do what you can do. Anyone in our position would be the same. Children like Leo have a lovely way of keeping your feet firmly on the ground and in the present. And so any person, you, would also be the same. Yes, of course, we collapse from time to time, but fortunately, PJ and I do this at different times and in different ways.

There is no other feeling on earth than seeing and knowing your child, your only child, has a life threatening illness, and we've met many parents in the exact same position. But that's the thing; he's our only child and so we have to do what we must. And that's do what we're doing. Cope, literally from day to day, and not expect too much from ourselves! Give, every day without fail, to our only child and ensure he is happy and content, and when he says he's scared, tell him it's fine to be scared.

In fact, we're nearly lucky, if you think about it; although lucky is not quite the right word. But here's the thing...any one of us could get knocked over by a bus, be killed in an accident tomorrow etc etc etc. Our lives are only in the present anyway, but we're fortunate to have been kicked up the backside that life is here for the living. And so we can do what we can, in the present day, now, to live life, love life and ensure Leo has the best life ever. The other option is perhaps to be a bit lazy and complacent and think that we'll do x, y and z next year or next decade!

Gosh, sorry for the 'War and Peace' posting but sometimes it's quite useful to brain-dump here to clarify thoughts, so please forgive me!!

Tomorrow's a lovely, new day (that's me trying to be positive, again!!!) Am I that transparent?

Got to take my Tablets???

2008-11-15T23:37:00.003Z

Leo and I have had a nice day together as PJ has not been well this afternoon. Stress does all sorts of things to people and he needed some time on his own to gather his thoughts and actually get some sleep as neither of us are sleeping right now.

So Leo and I went off to see Charlie, our friend's lovely son who Leo knows from before we moved to Spain. He has also seen him lots since our return and each time, they just play so well together. Charlie could not care less if Leo has no hair, no eye lashes, no eye brows and a red bow around his neck from the bag of his central line. Kids are just fabulous for just getting on with things and leaving it to us parents to worry about everything! One of our duties as a parent, I know!

On our return home this evening, Leo pretended to talk to his friends Ross, Jack and Saul in Spain on the phone and I overheard him say 'no, I can't come back to Spain as I have to take my tablets, Ross'.

Neither PJ nor I have ever mentioned tablets to him and usually he talks about medicines so that was both strange and sad, that as a 3 year old (albeit he's 4 in just over 2 months time), that he has the presence of mind to know that it's because of perhaps more tablets and meds that we're here in the UK.

Unfortunately being in the UK is not helping his eczema, which is back with a vengeance, and his mould allergy is also making itself known. Being in the UK has its advantages of course, but we're hoping that his eczema and chest problems settle quickly.

School's Shut...Honest!

2008-11-14T23:39:00.004Z

The first words from Leo when he woke up this morning were;

'School today, Mummy?'

Quick, think of something...urm, how about;

'Sorry Leo, school's shut today!'

What else could I say? Of course the school is open five days a week but we've only got him there for 3 afternoons as we thought he'd be too tired and we'd need to ease him in to a 'normal' existence!

Next week will be a little hectic as we're at the hospital Monday, Tuesday and Wednesday.

Tuesday is kind of run of the mill as it's a GFR test which checks Leo's kidney function to make sure the high dose chemo he's had has not caused any kidney damage. They inject a nuclear compound into his central line and draw blood over the course of the next 5 hours to see how his body secretes the nuclear compound. So far, his kidney function has been fine so no worries there.

Wednesday is back to the Eye Hospital again. Seems like the 3 weeks between his eye appointments fly by and given Leo used to hate people looking at him and especially his eyes, he seems to do well there and 'comply' with what they need to test in order to make their assessments accurately.

Last time we went to the Eye Hospital, Leo's right eye lid seemed only very slightly swollen and maybe lagging a little, but only if you knew to look for it. Unfortunately since then, his eyelid is now about halfway down his eye and he is squinting again whilst also pointing with his finger when watching TV or pointing at distances, which is what happened when he was first diagnosed.

Hence his MRI, which was already schedule for Monday, as well as what the eye docs have to say are both crucial. This next week is probably the most scary since his diagnosis as no-one seems to know why his eyelid is doing what it's doing. The eye docs did previously say his eyelid may droop over a few years and if so, it's cosmetic and easily sorted with a small surgery.

It would be unusual for a relapse so soon after treatment but not unheard off, which is what Leo's consultant told us last Monday. So we've known this since Monday but I could not bring myself to physically write it down. However, it's kind of therapeutic to do so now and thought you may like to know what's going on. We have the fear of relapse upon us for the next 5 years with it being highly unlikely to recur after 5 years. However the thought that it may be back already had never really occurred so we cannot see, think, eat, drink or breath without thinking about Monday and what the MRI will or will not show.

We've been advised that it may be likely that the MRI will not show all that much in terms of relapse as a few cancer cells in a particular place may not be visible on a scan and so we're prepared for an inconclusive result on Monday. Reason also being that there may still be some swelling locally post-radiotherapy, however this would not cause his eyelid to swell and droop as quickly as it is doing now.

So who knows? Tomorrow's another day and fortunately we've very supportive friends near us here in Bristol and so despite PJ and I having colds and not sleeping for this past week, we're going to see if we can put our fears aside as it doesn't help anyone and make sure we can have a fab weekend with Leo...at the risk of him being bored with Mummy and Daddy!! He'd prefer school any day!!!

Independent or what?

2008-11-13T18:29:00.003Z

A huge week this week - Leo started school at a lovely Montessori school here in Bristol. Having been a bit nervous about whether he'd cling to our legs and not want to be left without us...well, he's just done so very well!

He practically told us to leave him there, and yet the expectation had been that Leo and I would stay for about an hour each day this week and then increase it next week, with me perhaps leaving him for increasing amounts of time over the next few weeks. In fact, it's gone so well, he's been happy to be left to be a 'normal' child for a few hours each afternoon. Wonderful. Jujst fabulous. Perhaps we'll increase his afternoons there from three to four quite soon!

We always knew he had that independent streak in him before he had cancer and now it's as evident as ever, which is very welcome. He's had so much heartache over the past 7 months that if he'd become distressed or upset at being left at school on his own, we'd immediately question whether it was right for him at this time; clearly it is!

An old friend (not in age), has visited us this week also. The lovely Ian Howat has been to say hi and we wished he lived around the corner! Both PJ and I worked with Ian years ago before we got married and had Leo, and he remains a supportive friend. To say Leo did not want Ian to leave is an understatement. Ian was amazing with Leo; there was lots of playing up and showing off, and that was just Ian!

I'm Not Brave

2008-11-09T20:35:00.002Z

We're spoken to quite a few people this past week or so who have found the words describing our fantastic son quite an inspiration. And when this event I am about to tell happened earlier today and I retold it to PJ, he said straight away that it needs to be put here. It frightens me to have to write this as well as makes me feel wholly hopeless. As parents, we're here to protect our children, aren't we? And yet, when it comes to things like childhood cancer, it's so very evident that we don't have it within our powers to protect our children 100%.

And so here's what happened today;

Leo and I were cuddled together watching Loony Tunes Babies and one of Leo's favourite characters, Bugs Bunny, was being particularly brave. I took the opportunity to say that I thought Leo was brave and even more so than Bugs Bunny. Leo adamantly shook his head and said 'I'm not brave'. I said that he was and that his cards from family and friends once he'd finished his extensive chemo and treatment a week or so ago, told him he was a brave boy and many people thought he was very brave. He answered, 'I'm not brave...I'm scared'.

Upset and shocked as I was, I said 'it's okay to be scared'. I just felt there's no point telling him not to be scared. We learned our lesson when at the beginning of this whole thing, he was getting very angry and we told him he was being naughty, thereby also getting angry ourselves. The therapists told us that of course he'd be angry. It was only natural. Life was scary and made him angry because we'd be in Spain, he was settled in school and had lots of fun with his friends. What could I say? Tell him not to be scared? What's the point in that?

Where did we go so wrong? Are we not doing enough to protect him from all this cr*p? I have to admit it does answer a massive question I've had whereby each time I read his cards to him which congratulated him on being brave, he got really angry and very upset. At least now we know what's going on and will ask the Clic Sargent therapist on Tuesday what we can do to help him, or at last try to...

On a more positive note, he has started eating these last couple of days. He demolished a small plate of spaghetti bolognese last night as well as some chips and tiny piece of chicken for lunch. So hopefully no nasogastric tube will be needed but we'll wait and see. He is also meant to start nursery again on Tuesday afternoon but if his bloods have not come back up to show he has some sort of an immune system, then we'll have to postpone until his neutophils and white blood count are considered safe.

Today we pretended to have a picnic on the beach by way of laying a towel on the floor in the lounge and eating lunch there. Leo's imagination was awesome as he built sandcastles and then wiped his hands off before putting on some suncream. He also needed sunglasses and told PJ and I to make sure our sunhats were on our heads...all make-believe but very real. It really minded us of the afternoons spent as a family and with friends on the beaches at Los Alcazares in Murcia.

Speaking of which, Leo's school in Spain, King's College have today held an amazing fundraising event with proceeds going to Clic Sargent here in the UK as well as a similar local charity in Murcia. It sounds like they had a very busy day with a huge golf tournament, a magician, lunch for 160 people, a raffle, face painting and all sorts of other activities. I'd imagine most of the people attending either cannot even remember Leo, have never met him or of course, remember our cheeky, energetic blond haired, blue-eyed boy from when he was in the Pre-Nursery class with Miss Cara and Miss Gill. He may not look the same, but inside our scared boy, he's still very cheeky, which is somewhat reassuring!

We're sorry that none of us could attend this tremendous event at King's College and often feel we've let them down by not attending, however as it turns out, Leo needed us both here - his temperature is still playing up, his food issue needed to be dealt with and whoever attended would not have been back in time for the meeting with his oncologist tomorrow afternoon, where we discuss for the final time, whether we head into the maintenance chemo regime for the next six months.

Tomorrow's another day...

B is for Blood

2008-11-07T13:59:00.002Z

We've had an improving few days on the energy front. This morning we've even had 'circle time' with PJ, Leo and I doing a bit of dancing and then sitting down to sing the alphabet for about an hour with Leo as our teacher. Each time we got to the 'now you know your ABC, next time will you XXX' Leo changed the final sentence to say things like 'swim in the sea..with me?', or 'have a cup of tea?' It was so nice and really warms our hearts that Leo loves learning and being in charge!

'A' therefore is having an 'absolutely' fabulous morning.

'B' is for blood of which Leo had his fifth blood transfusion on Wednesday morning. Unlike other transfusions, we think whoever gave this blood must have been quite a laid-back person as it's only today, 48 hours later, that Leo has some more energy. Although we have been giving him an additional dose of this stuff called Polycal in his milk to ensure he has a few more calories every day. It's tasteless and boosts his calorie intake without him knowing. He's still not eating well, if at all, and can count four small things that he's eaten since Wednesday evening, but even that's an improvement.

So if by next week he's still not eating properly, the doctors are going to put another naso-gastric (NG) tube up his nose and into his stomach so as we can at least get some proper nutrition into him. Unfortunately the 3 months he's been living on milk has now caught up with him and we're waiting on the dietician to come back to us about his iron levels. It takes a very long time for iron deficiency to happen but it sounds like that's what's happened now. If this continues it can create long term problems with concentration and memory so add that to the late effects of the radiotherapy and this could be a serious issue. So let's wait and see... Just goes to show that just because the final chemo weekend has come and gone, it's not all finished just yet.

We're also still checking his temperature way too many times to mention as it keeps spiking and even went to 38.3 yesterday and despite expecting another trip to the A&E and subsequent stay on the ward again, the temp then came back to 37.8 and stayed there. Phew!

Thanks for your messages if you enjoyed my last posting. I think I cried all through writing that but it's been the easiest post to write so far, and has had an effect on many people, which is what I wanted from this blog. It's a dream of mine that other families with children in Leo's position can read this and take some comfort from it. So what I'd ask is if you know anyone who would benefit from knowing about Leo and his battle with cancer, then do feel free to send them a link to this blog.

Leo is an absolute inspiration to us so if we can share that with others, it's even more of a privilege to be his mum.

Yes You Can

2008-11-05T05:55:00.000Z

Can we expect a first class health-care system which looks after our children to the best of their ability here in the UK? Yes you can!

Can we expect a mighty kick up the backside when cancer decides to take a bite? Yes you can!

Can we sometimes thank cancer for rearing its ugly head into all our lives to put things into perspective and see life for what it really is? Yes you can!

Can we expect the guys who do our car's MOT to use the rear seat-belts to ensure the safety of Leo's Winnie the Pooh teddy and Po of Tellytubbies fame? Yes you can! And how cute? True story; happened today and reduced me to tears!

Can we be completely shocked and ever so thankful when complete strangers offer advice, sympathy, a shoulder, friendly emails and even fundraising after they learn of our brave son's battle against cancer? Yes you can!

Okay, so I may be getting very carried away on the Obama train right now, but hey, isn't that what we're all here for? Let's get carried away. Let's dream and then set about making those dreams happen. And having fulfilled some of our family dreams and had others mightily dashed, I wouldn't have it any other way.

One thing that this lovely roller-coaster of a ride we've been on has taught me is that life is overwhelming at times, but it's how we deal with that which matters.

How many times have we wanted to crumble?

How many times have we been angry at each other?

How many times do we search Google for any glimmer of hope which the doctors have missed or an all-new, awesome treatment which will offer Leo and other children like him a cure?

Too many...but...these things always happened before but we thought of them as much more mundane because we weren't experiencing the daily feelings of fear that our son may not live to see his 9th birthday.

Yet from this point on, and you can remind me of this at any time, I am not going to allow that fear to ruin our lives. I promise from this point on to use that fear to strive for the best life we can give our son. I will also strive to ensure other families and children affected by this horrid, horrid thing called cancer, are able to continue to get the best care, support and love from people around them including Clic Sargent.

Can we be thankful that there are people who care enough to organise a Golf Fundraising Day at Leo's old school in Spain and most may never have even met Leo? Yes you can...

Patience is a ...

2008-11-02T15:03:00.002Z

Patience is a virtue or in our world, pain in the backside! I'm terrible when it comes to waiting for things and so when Leo's temperature went to normal (36.8), on it's own i.e. with no paracetamol on Saturday morning, we felt elated, over-joyed and somewhat baffled! It was short-lived though as by 3pm, it had hit 37.9 again, and stayed there or thereabouts until this morning. Again, it was relatively okay this morning before again creeping back up to the right side of 38 degrees.

Now we have to be patient again and see what the next day and night has in store. Leo will have zero immune system at some point very soon and certainly in the next couple of days, which means that the normal rules apply. If the temp hits 38 degrees twice in the space of 30 minutes, or spikes at or over 38.5 degrees, it'll be another few days in hospital and more IV antibiotics. Urgh! Need to have more patience...

Also somewhat impatient at the fact Leo has an MRI booked for 15 days' time and another kidney function test. Having said that, and not sure if I'm repeating myself (again), but it's not this forthcoming MRI which matters. The docs won't compare this one to the last two. They'll wait another 3 months (February) before doing another MRI. They then compare those two for differences i.e. are there any changes / growth in the 'scar tissue' / white stuff that shouldn't be there on a 'normal' / non-cancer scan? I guess it will be simple to see as the cancer has only ever been in one side of his brain and head, and so it's simple, even for us, to see the differences between one side of the scan and the other.

Patience...wish we had more of it!

Playing the Waiting Game...

2008-10-31T19:57:00.003Z

Leo's temperature is still not cooperating and got up to 38.8 degrees yesterday afternoon, only about 30 minutes after Sarah, Leo's lovely Clic Community Nurse had left. In fact whilst she was with us and taking Leo's bloods, his temp was 37.9 and 38.3 and as she left she said to call the Day Beds Ward at the Children's Hospital if it hit the all important 38.5. Lo and behold, his temp seemed to want to defy what we want.

Having said that, doctors are stumped as to why the temperature is spiking and why he's had a low grade fever for such a long time. Neither PJ nor I are ill, and nothing has changed since he was last admitted whilst neutropenic. They stuck a vacuum up Leo's nose yesterday to grab some bogey (sorry, that's the only way to put it), and tested it for viral problems which may be causing the temperatures. But the test came back all clear today. His line in his chest is clear of bugs so it's not that, even though his chest exit site is slightly raised and red.

Unfortunately the doctors cannot really do anything if the tests they run don't show a problem. His CRP was also under 10 which shows there's no infection brewing. So we're all stumped and to say PJ and I are concerned is an understatement. His right eye lid is a little red a swollen and a little more so from Wednesday when we were at the Eye Hospital.

So it's a pure waiting game and one we don't know how to play. The issue is that once he is neutropenic and if his temperature spikes again, then the doctors will admit him and give IV antibiotics again, much as they did last time. They'll give him IV paracetamol which will lower his temp, and once it's been down for 48 hours, they stop the antibiotics and paracetamol and left him go home. Same as last cycle. But then as soon as that happens, his temperature goes back up and hovers between 37.5 and 37.9 with a spike above 38 degrees every day.

Leo has been energetic even at the worst of times and has kept PJ and I on our toes, but the last week, he's wants to go to bed early and was asleep before 7pm yesterday, sleeping until 8am or so. He also says he's cold with only a T-shirt on in the house and yet his temperature is still raised.

Sorry for letting off steam here but sometimes things can make more sense when they're written down. Sadly that's not the case today. So we sit and we wait...

Thank You

2008-10-29T18:34:00.002Z

As things start to return to normal, I'm conscious that we've not really gotten round to saying thank you to you personally just yet, and having said that, we're constantly thankful for all the amazingly kind things people have done for us all.

Leo is doing okay after his final chemo although his temperature if still hovering between 37.5 and 37.9 so it'll be interesting once his bloods start to drop and his immune system weakens to zero next week or so.

We also ha another follow up with the Eye Hospital today and after enduring three different doctors and multiple tests, it was a good day. Leo did so well doing the tests themselves...think normal optician tests multiplied by about ten, plus you're age 3! He did us all proud and the staff at the Bristol Eye Hospital, whilst obviously very interested in Leo's case, were very patient and keen to ensure he was calm and remained so.

The good news is the sight in his right eye has improved slightly from the tests of three weeks ago so that is promising. The on-going concerns are over the continued photo-sensitivity, plus his eye lid of the right eye is starting to droop, but only slightly. His eye also tends to 'shiver' at times, but only slightly and only if you were looking for it.

The eyes docs are not sure why the droop is happening although this did happen at the beginning before and during diagnosis. It could be due to a number and combination of things, but only time will be able to tell us. The eye lid droop could be muscular damage done by the tumour itself at the beginning but then we're not sure why it's started to do it again, as it appeared that the lid had improved and was the same as the left eye lid. Could it be new tumour causing new problems or should we not be thinking about that just yet? Nothing ws mentioned along these lines but you can't help wondering / worrying. Where the 'shiver' has come from is also difficult to point a finger at as again it was a problem which happened at the beginning but was sifnificantly worse than it currently is. We're back for more repeat tests in three weeks to keep an eye on things (forgive the pun!)

Sounds so inane, but we're very grateful that we have your support in many ways, but we're also so grateful to have the NHS. Leo's care with the NHS has been awesome and the only criticism is on the massive burden on the system as whole which impacts on children's treatment.

There is a significant constant pressure on doctors for beds, even in paediatric oncology, where children's treatment 'may' be compromised due to ward closures elsewhere in hospitals. Therefore if a child is due to have chemo over a given period but all ten beds are taken up by children with infection, those children cannot be moved elsewhere. It's too dangerous to administer chemo on a non-oncology ward and so if children with infections cannot be moved or discharged for clinical reasons, children's chemo treatment can be disrupted.

We've been fortunate but even last Friday we'd already been told Leo could not start his chemo until maybe Sunday, and yet an hour later, we were called to get Leo into hospital as they'd found a bed on the Bone Marrow Transplant Unit. Leo's chemo protocol has to be done on time to ensure optimum treatment, hence the many incidences of GCSF to ensure his bloods were safe for him to have the chemo.

Anyway, I've gone on and on, but what I wanted to say was thank you to one and all, and to the fact that we are in the UK with free at point-of-service healthcare.

Now the Work Starts

2008-10-27T21:48:00.003Z

Leo finished his final chemo yesterday and has been doing well today, albeit no appetite and too much of a low grade fever for our liking. It hit 38 degrees but then came back down to 37.6 within 30 minutes, with the rule being if it's 38 degrees twice over the course of half an hour, he'd have to be admitted to hospital immediately. And so whilst many may be breathing a sigh of relief at the end of treatment, this sigh will happen for PJ and I a) once we've got through the next 3 weeks as it's during this time his immune system drops to zero, and b) once we've finally had the proper official meeting with Leo's paed oncologist in this next two weeks.

When I say we'll have a sigh of relief, it'll only be short-lived as then the cycle of either maintenance chemo (we're still undecided), or scheduled checks on his cancer via MRI scans every 3 months and checks of his growth, hormones, heart, bones, sight etc etc etc starts and continues for the next 5 years. So perhaps it's best to say we'll be doing alot of holding out breath over the next 5 years.

We're also now looking to the future in a big way in more than one way. My cousins Donna and Nicola are doing some major fundraising by putting themselves through the major pain of the GRIM (8 mile army assault course in the middle of winter..madness? Yes, but all in the name of a good cause). If you'd like to sponsor them, let me know and I can pass along your details or better still, email Nicola on nkdale@hotmail.com). It'd be nice to know they're not going to putting themselves through a grim experience for nothing!

I'm also now going to reach out to you for more than just cash as there's plenty of time for that...over the next 2 years, we'd like do as much fundraising as possible. So my plea at this time is for this; if you or anyone you know have any knowledge of fundraising, event organisation or online and offline marketing or any of these types of things, then please, please get in touch (email: helen@wingroveclarke.com)

Isn't it strange that only about a week before Leo was diagnosed I was chatting with my friends in Spain before my short trip home to say that as soon as I'd recovered from my operation, I'd love to 'do' something for a good cause. Raise money by doing a half marathon or organising a music night or ball or something similar.

Well now, I plan to do all of the above and then some, and I'd really like your help to do this and raise as much cash as we can. Funny how things happen, isn't it? As a direct result of Leo having cancer, we now have the opportunity to raise money to make sure he's able to chill with Mickey for a day or two, and ensure other families and children in the same boat can benefit from our experiences in more ways than one.

And Finally...

2008-10-25T19:53:00.004+01:00

As I write, Leo's already had his final chemo dose; it's all just Mesna (which protects his bladder) and hydration fluids via his IV until tomorrow morning, and then...that's it!

Who'd have thought we'd have got here? As I've said so many times, it feels like it only yesterday that Leo was diagnosed, but then on the other hand, I think PJ and I have aged beyond years!

As for Leo, he's doing okay. He has spiked a temperature again today so had some paracetamol to bring it down and to say I'm not surprised, is an under-statement. We had to call the Day Unit on Thursday to make sure that a constant temp between 37.6 and 37.9 was going to be okay for chemo this weekend. As it happens, it was but his temp is still a sign of something rumbling away. We just wonder whether there's something with his chest, the mould allergy he has or something with his line again, which has been going on since about 7 weeks ago. Perhaps we'll only know if it continues until he becomes neutropenic again in 8 to 13 days time.

So even though chemo is over this weekend, we've another cycle to keep Leo healthy through it and keep monitoring things. Fingers crossed...

Failing but Learning, All the Same!

2008-10-23T16:50:00.003+01:00

Yesterday was Leo's final visit to the Royal Marsden Cancer Hospital in Sutton and as it turned out, we kind of failed him somewhat. We forgot how his experience of this hospital was for six weeks, day in, day out, the same routine every day. And so failed to spot that he'd think he had to have the medicines which made him sleep, and that he wouldn't need to have loads of things done to him whilst he was there. If we had, then we would not have had such issues getting him out of the place. He was determined he had to visit all three playrooms before having the anaesthetic in the RT suite.

It took a good half hour to even get him strapped into his car seat before he was calm and realised that yesterday was not going to be like all the other days. I guess PJ and I forget sometimes that we know what's going on and our relief that yesterday was going to be the final time we saw the Radiotherapy Consultant, that we failed to guide Leo through what was going to happen; and more importantly, what wasn't going to happen.

As it was, it was a useful meeting, if a little strange. He didn't tell us anything we didn't already know; except that is the photo-sensitivity that Leo's had (although it's getting better slowly) is nothing to do with the radiotherapy. It's more likely to be tumour related. At least we're in a city in Bristol where there's an Eye Hospital with plenty of specialists with an interest in Leo and his cancer, so that's good!

One thing which did get to us was when the doctor said 'if' Leo makes it to teenage years, he won't look like a 'freak' when he walks down the street. And that's pretty much word for word what he said. Now I know this is realistic and 'normal' doctor speak but it would have been nice to shield us somewhat from this. No matter how much charm some doctors have, and no matter how often they have to tell people bad things, do they sometimes not realise how what they say effects us?

I hate the ifs and buts of the future, but then I guess none of us know what's around the corner. We could get knocked down by a bus tomorrow; no-one really knows what the future holds, do they? The 'freak' comment was regarding the effects of the radiotherapy on the growth or lack thereof on Leo's skull, where the three fields of photon radiotherapy beams were directed.

It's true that one of our fears from the radiotherapy was the cosmetic effects to Leo's face and head, so at least we know he won't be desperately affected in the long term i.e. he won't look disfigured. But then I guess there'll always be questions that we, as his parents, will have to face. Yes, he's young and only three years old now, but the late effects such as infertility will need to be addressed. How often will we have to remind him that if he smokes, he will get cancer? End of story. No negotiations. No ifs or buts. What about the small scars he'll be left with on his chest from his Hickmann lines? Small, and practically won't be seen once they fade with time, but constant reminders all the same, and reminders which will lead to questions from an inquiring mind.

Well, no parent signs up for their child to have cancer, but PJ and I will do and have tried to do, all we can to protect Leo, and sometimes, like yesterday, we do get things wrong. We'll no doubt get things wrong again, but in the meantime, we hope he'll be okay; we pray he'll be okay...as we all do.

Tomorrow's a new day, and we hope there'll be a bed available for him to start his final chemotherapy as an in-patient. Seems there's plenty of children who have problems with their temperature at the moment and so the ward's pretty full.

We never thought we'd get to this point when he was diagnosed back in May, but here we are. In once piece, and praying for a future.

Home Again

2008-10-19T22:03:00.002+01:00

Home after a few days at the hospital and Leo is better for it, although still not eating, not really drinking all that much milk and still has a mighty cough, especially when he goes to bed.

So only five days until Leo starts his final round of chemo and actually, PJ and I can actually see the light at the end of the tunnel. Amazing what a few sleeping tablets can do for your mood, isn't it?

Of course, there'll be bumps along the road from here on in, but it's how we deal with them as to whether those bumps will be mole hills or mountains. Life won't ever be 'normal' again, but I actually quite like thinking we've been given a (really nasty) kick up the backside and so we're having to not take anything for granted any longer.

Leo's looking forward to starting school (nursery) again and said he wanted to walk to school which is what we did in Spain. Alas, unless he can walk about 3.5 miles each way, then this won't be happening. Shame as we loved being able to stroll on down to King's College, in the sunshine most mornings and afternoons. Oh, what a school run that was. Well, it wasn't a run so much as a gentle stroll with sun glasses on!

Back to the Royal Marsden for a check up, post-radiotherapy and so we're keen to find out what they say about the ultra light-sensitivity Leo still has.

Tomorrow's a new day, and we're looking forward to it.

Inevitable

2008-10-17T22:20:00.007+01:00

After nearly two weeks of getting a temperature of up to 37.8 every afternoon, it was inevitable that Leo would spike a fever of 38.8. Late Thursday night / Friday morning, it's one of the few nights PJ and I had stayed up to check on Leo and have a good chat about the future. Lo and behold, as we're heading to bed, Leo's temp was way too high and so off to Bristol Children's Hospital we went. There are good things about the timing, as there was no traffic at all on the roads and so the 2 mile journey took minutes, plus the children's Accident and Emergency room was empty too (not that we'd have to wait as each time Leo is sick, we call the ward and then they notify the A&E who then arrange a room for when we arrive).

Leo's temp came back down quite quickly with some IV antibiotics and some paracetamol and today his temp has only been up to 37.8. His chest X-ray of last night was cloudy but not much more has been said about it. And for days Leo has been saying his mouth is sore but only when it's time for doing his teeth, however it looks like we should have believed him now as he does have some mouth sores too.

We'll find out a bit more tomorrow but it's likely that as his temp came back down and he was happily playing all day, the docs will let him come home tomorrow, so we'll have to keep a real close eye on him...or wrap him up in cotton wool?

One bit of the jigsaw has been solved or answered for us; the cyclophosphamide suggested as one of the two maintenance chemo drugs, is available as a liquid as well as a tablet so those nights of lying awake wondering how we'd get Leo to take a tablet were wasted! Having said that, the doc doesn't know what the liquid tastes like so who knows? Leo may decide not to take the drug however you do it!!!

Anyway, tomorrow's another day and whatever it brings, Leo's being brave and so good about being back in the hospital again. One week left until the end of treatment and then life nearly restarts with maintenance chemo...

Too Tired to Eat

2008-10-13T22:33:00.002+01:00

I guess it was going to happen at some point but Leo is certainly more tired and more 'off' than normal. He's no interest is going out, playing actively, or even eating. He's quite happy to watch Handy Manny and Mickey Mouse on Sky+, and do the odd bit of drawing and colouring. He told me he only wanted milk today as he was too tired to eat.

Leo's eye is still very, very light sensitive and if it continues, we may see if we can get him back to the Eye Hospital before the next appointment on Oct 29th. We are back at the Royal Marsden next week so they may also be able to shed light on the problem (excuse the pun).

No Decision is Still a Decision..Isn't It?

2008-10-11T23:48:00.002+01:00

As you'll see from the title of this post, no decision has been taken over the whole maintenance chemo side of things..but that's still a decision, isn't it? If you'd asked me yesterday, I'd have said, yeap, let's go for it. However, today, I'm all for not pursuing further treatment. Leo's been through enough and if doctors cannot say for sure that another 24 weeks of treatment will help, then why would we, or even , why should we put Leo through this?

PJ feels the same and his mind changes from day to day too, but then one prevailing thought is that if there's more treatment available, even if you've no proof it will work, then why wouldn't you choose the extra treatment? Extra treatment equals extra coverage surely? Wouldn't we all like to know that everything's been done which could be done... One good thing is we can start the treatment and if there are problems, such as Leo not wanting to take the daily chemo tablet or if he gets a risky infection too frequently, then we can stop.

Leo's on good form at the moment and being a totally 'normal' three year old. Throwing a fit in the middle of Harvey Nichols because he was tired, bored and stuck in his buggy..just your plain old normal toddler behaviour! But then take him to a toy store to spend some cash given to him by the cancer charity Macmillan, specifically for toys, and what does he choose? The most expensive thing in the place? Nope! A £1 plastic, stretchy lizard, of which he already has three!

He's probably neutropenic this week and as he still has his heavy cough / cold, all eyes are on this wandering temperature which keeps going up to about 37.8 each afternoon / evening since last Saturday, but then it returns to normal, of its own accord. It'll be interesting to see what happens once his immune system is next to zero.

We've another eye appointment to check Leo's sight on October 29th however, neither PJ nor I are hoping for much improvement. Unfortunately Leo was drawing pictures of himself this evening whilst we were over with Ainslie, Ben and Matilda, and the pictures all featured one eye completely coloured in black and one 'good' eye. Upon asking him about this, he said the black one was his bad eye and the other was his good one. Shame.. but hey, a Leo alive and healthy at the age of 40 but blind in one eye, or the alternative...which one would we choose?