Waiting Game

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

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

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

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

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

First Day of School

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

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

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

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

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

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

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

School Tomorrow

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

Where'd He Get Those Moves?

Frustrating Week

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

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

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

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

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

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

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

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

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

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

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

Funny what happens in one year...

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

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

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

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

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

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

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

We cannot control whether the cancer returns.

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

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

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

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

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

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

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

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

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

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

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

Put on those dancing shoes...

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

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

Enjoy!

http://vimeo.com/1211060

It Never Ends

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

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

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

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

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

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

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

Still Clear

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

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

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

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

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

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

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

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