More Medical Updates

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

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

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

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

Need I say more?

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.