What A Fortnight!

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

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

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

Tomorrow's another day...

School Disco...

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

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

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

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

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

Fireworks

One Year Clear

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

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

Post-radiotherapy stuff

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

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

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

Sorry to Have Been Away for a While!

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

Leo is thriving at school and very much enjoying it.

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

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

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

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

I would have talked less and listened more.

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

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

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

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

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

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

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

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

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

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

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

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

Phew!

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

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

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

Waiting Game

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

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

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

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

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

First Day of School

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

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

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

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

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

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

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

School Tomorrow

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