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Medical Update and other things

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

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

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

What A Fortnight!

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

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

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

Tomorrow's another day...

School Disco...

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

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

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

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

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

Fireworks

One Year Clear

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

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

Post-radiotherapy stuff

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

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

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

Sorry to Have Been Away for a While!

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

Leo is thriving at school and very much enjoying it.

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

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

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

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

I would have talked less and listened more.

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

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

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

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

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

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

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

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

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

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

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

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