Silence is Golden

When there's no updates on the blog, yes, it does mean it's either bad news or good news; however on this occasion, we're happy. So apologies for the lack of info, but we've either been at the hospital with Leo this week or playing with baby Sophie, and seeing Andrew and Julia.

Leo's MRI on Friday afternoon showed a significant decrease in the size of the tumour in Leo's head; maybe even up to 50% reduction. We'll know more on Monday when we speak with his doctor again once the measurements and comparisons have been made. The advise here is yes, be excited and pleased the chemo is doing it's thing but as this tumour is so rare in the site it's in and in a child of Leo's age, we don't know if that's good or bad. But hey, we'll take this result for what it is..a clear indication that something is working to combat the cancer.

The MRI also showed that the optic nerve is now visible on the scans and the impingement onto the brain has considerably decreased.

This matched with the info gained from a lengthy visit with the opthamologists this week at Bristol's Eye Hospital. They feel Leo's sight has returned to near perfect when using both eyes but given he's 3 and not all that happy about being in the hospital for hours on Wednesday, he wouldn't let them check each eye individually or look at the back of his eye so no news there.

Not sure on kidney function or his chest Xray results but the main ones are the vital ones given above. So a quick punch of the air for today and then tomorrow is another day.

The other news is that Bristol cannot offer to do his radiotherapy on time as they can only anaesthetise two children for radiotherapy each day. Leo would be a third and so to do it here in Bristol would mean a delay of 13 days. On consultation with those in the know, this delay could / would be detrimental and as such, we may be off to the Royal Marsden in Surrey for the 1st August for at least 6 weeks. It will mean more upheavel especially as PJ will be off to start work in September and we may have found a house in Bristol, as of today!

So if you're having a swift one or more this weekend, please raise a glass for a few things; the first to chemotherapy, as it's clearly doing something; the second, to Leo for being so brave (although when you tell him this, he shouts at you that he's not); and the third, for Sophie, as it's her Christening this Sunday, and she is probably the most smiley baby we know!

Rubbish

Punching a pillow is not only how we continuously feel but it's also what we've been advised Leo can do / should do, as and when he gets angry. PJ and I saw a therapist today who specialises in children like Leo and he quite happily played with the play specialist on the ward whilst we went for a chat. The therapist said that if his behaviour was escalating to the point of anger and biting etc, then that would just be 'naughty' but because he just 'goes', his head just flips and he's bordering on rage in literally one second, then this type of behaviour is pure anger at his not being able to communicate to PJ and I how rubbish this whole situation is.

Leo did in fact tell us whilst the football was on the other night that he 'wanted to go back to Spain because England was rubbish!' I personally don't think it's England which is rubbish; I think it's the lack of his friends and things he's grown fond of in Spain that he misses, and the fact he has to go to the hospital etc etc. Thank goodness he doesn't know what we know otherwise he'd really think things were rubbish.

Trying to find a house is a tricky rubbish situation too as even though we'd qualify for housing benefit of £650, we'd need to put towards this to find somewhere we'd feel happy calling home for a year or more. Having said that, finding the extra is not the problem. It's finding a landlord who will accept a family on housing benefit which is wierd as it's guaranteed income for landlords regardless of what the credit crunch is doing? I guess there's the whole cultural thing in this country about being on benefits! Plus we also need to be able to give work references which is tricky as neither of us are working right now so overall our grand plan is being scuppered and we'll have to wait a while longer before we can to move into a place we can make into a safe, secure and comfortable home for Leo, and us, to have some sort of normality.

Hopefully Leo will cheer up tomorrow as he is seeing his cousin baby Sophie again after seeing her a couple of weeks ago. She is over from Dubai and Julia, my sister-in-law came to see us en route to catching up with some old school friends in Bristol a few weeks ago when Leo was in hospital. This time my brother is also over with them as they're having Sophie christened on Sunday, so a nice happy family get-together to counter all this 'rubbish' will do nicely.

A Quiet-ish Day

A quiet-ish day because Leo has had a low-grade temperature but also because he decided to 'kick-off' and have a little biting fit this morning. As a result, we said he was not allowed out today and also not allowed any treats. He's therefore had a day of DVDs and playing at Clic House which is not the most suitable place to try to contain him as he does not want to be with anyone else but PJ and I. But we're making some head-way into renting a place and today has meant we can sit down and concentrate on sorting out our housing and benefits, so in a way, it's been a blessing in disguise that we've had to stay home.

Just finished watching Andy Murray on Centre Court at Wimbledon and recognised some of Leo's fighting spirit in the Scot. Nice one, Murray. Keep it coming. Always enjoy a comeback kid going against the odds.

Off to the hospital tomorrow for kidney function test to assess how much his kidney function has been damaged as a result of the chemotherapy. We also have a much-needed appointment with some child therapists to help us in looking after Leo's emotional needs right now. We completely recognise that he's in an alien place in his life right now. Not only does he have doctors and nurses eyeing him up all the time, but we're no longer in Spain, he's not attending King's College which he absolutely loved, he has no friends here which he sees on a regular basis and he has to share one room with his Mum and Dad; now that final one alone is enough to make anyone go crazy!

Wednesday sees another day of family as my brother, his wife and baby Sophie are still here from Dubai, as it's Sophie's Christening on Sunday. Leo cannot wait to see baby Sophie again and as we're not sure if he's allowed to travel as far as a town near Gatwick whilst on treatment, this will be the last time he sees Sophie for a long while and probably until they all come to the UK as I doubt we'll be able to travel to Dubai for a long time. Travel insurance alone is prohibitive for cancer patients and those within five year's of having finished treatment so we'll have to wait and see what the future brings.

Finally, we've had lots of happy emails about the language used by our delightful son yesterday. Glad he's been of service to brighten your day, but you'll understand if we wish for him to refrain from doing this too often! Having said that, just writing bum-head and grumpy-chops raises a smile!

Enjoy...

Grumpy-chops and Bum-head

Just writing that headline makes be laugh but not half as much as when Leo called me both these names today. And after so many hard days with Leo, at what point do PJ and I, as his parents, tell him off for a) being cheeky to his mother and b) using the words grumpy-chops and bum-head? And where on earth did he hear these words anyway?

We all laughed together for about 15 minutes each time Leo said these words; they were used at different times this afternoon, so that's a good 30 minute giggle, altogether, as a family. Not sure when the last time was that we did this and it felt like good old times and very normal indeed. Should we now relish the day he calls me grumpy-chops and or bum-head again?????

Laughter may not be the best medicine for Leo right now, but it sure helps ease the stress for all of us, that's for sure. So all I can say is, if you fancy a good giggle, use one of these phrases today (even if it's in your head at someone who's annoying you) and you're sure to cheer up!!! (But don't blame any of us if you get in trouble!)

Come Rain or Shine

Come rain or shine, men can always find an excuse for a round of golf! Well 13 holes anyway, until the rain defeated them and the beer in the clubhouse became more alluring that the fairways, greens and 'friendly' competition. PJ played this afternoon and needed the respite after we had a tricky morning at the hospital with Leo.

Unfortunately Leo was not the most compliant he's ever been, and that was just walking through reception. I apologise to anyone who witnessed the WWF Wrestling performance Leo and I had in trying to coerce him into the lift at the Bristol Children's Hospital to head up to the Oncology Day Beds ward for a plaster and bung change plus to have bloods taken. All of which are nothing in comparison to other things the docs need to do but I think because the last time we were there, Leo ended up in hospital for 14 days. There's no doubt he must be anxious that he's going to end up there again for a long time, just as any of us would be. Except we can express these worries and concerns in ways that perhaps a three year old will find more difficult.

On the good news front, (apart from PJ's two at the 5th, par 4), Leo has eaten three sausages, two apples and drunk about 1 pint of milk this afternoon. Leo and I were pleased to be at Ainslie and Matilda's house in Bath whilst the boys played golf. And because it's a calming environment for Leo, where there's no other adults or older children vying for attention, Leo was chilled out and behaved well pretty much most of the time. We didn't experience too many of the massive explosions of anger and aggressive behaviour which has been prevalent this week. Maybe the increased food intake and the calm vibes sent out by Matilda and Ainslie helped to settle him down and feel comfortable and confident. Plus the fact that Ainslie is a born Nurse Nightingale and so amazing with children that he's always loved her company helps massively at this time.

It's so blindingly obvious that he is able to relax and let his worries dissipate when he's being left to play and use his imagination for himself, without too much adult interference and other children wanting his or my attention. Matilda, being nearly 7 months old, just smiled her most beautiful smile and made lovely baby noises when Leo waved the teddies at her and sang to her. Leo even went page by page through one of her books and read a story based on the pictures to her. Don't know who enjoyed it more; Leo, me or Matilda.

We are more determined than ever to try to sort out and finalise the whole benefits thing ASAP so as we can find a place of our own to live in an attempt to create a 'normal' home life for Leo. The difficulty is finding a landlord who will rent to us despite neither PJ nor I in full time permanent employment right now. If we can someone who will accept an increased deposit to counter any risk, then perhaps all the other anxieties may feel easier to handle. The oncology team includes child therapists also and we are meeting with them on Tuesday to see what tools they can give us to help Leo at this difficult time for him. So we do feel like we're tackling each issue in some way, shape or form.

Day 8 of cycle 3 tomorrow, so Leo's white cell count will / should be at its lowest and he's therefore more likely to become poorly. Quarantine it is then although at this point in previous cycles, we've ended up back at the hospital. Fingers and just about everything else crossed that this weekend has something different in store for Leo.

More than Words...

Have had a lovely day with Leo despite distinct changes in mood due to lack of appetite (his, not ours!) He has though, managed three apples this evening whilst cheering Espana on in the Euro 2008 Semi-final.

We've been in the garden at Clic House all morning and then for a treat we popped over the Hop Skip and Jump which is a play-barn for special needs which includes an oncology session on Thursday afternoons. What fun for Leo and fabulous support from other mum's who are at varying stages of their cancer stories with their children. It was nice to meet other mums who know how I am feeling and also to talk about other things non-cancer related. A wonderful place to take Leo and so we'll certainly be back next week, as long as he's well enough.

We've also had confirmation this afternoon that Leo is allowed to go visit my parents in Henley but only if it's a well-planned trip so as the paediatric oncologists at Reading have his details ahead of time. Having said that, I would only take Leo on the days when he's least at risk of becoming ill..or should I say 'more' ill!!

But to look at his smiling pictures here, you'd never know he's ill...not really?

Have Car, Will Travel

Woo hoo! As Leo says! We now have a car and feel free for the first time in ages. Not that free as at present we're not allowed more than an easy 30 minute drive from Bristol Children's Hospital due to the need for treatment if / when his temp spikes. Even so, we never thought we'd be more happy than a trip to Boots today, on our own, in our own car!

Leo is okay today but still off his food which is a longer period than normal, and if anything, he's eaten and drunk less today than earlier days this week. This is therefore unusual IVA post-chemo if previous cycles are to go by.

We need to keep an eye on things as it's vital he maintains his weight to ensure he keeps as healthy as possible. No amount of tempting with sweets can help at the moment, although we're keen for him to eat proper food before he even thinks of sweets and chocolate. Having said that, the fact that he's not even keen on eating sweets, not even as a bribe for eating baked beans or spaghetti, is a little worrying. Perhaps a call to the hospital for advice tomorrow shall be in order.

We're off to a play group specific to oncology kids tomorrow. Having written those words, it's suddenly dawned on me how strange a sentence it is and the thought that you never think you're ever going to have to write or say them! Anyway, on the week's Leo is well, he's able to go to an oncology-specific play session at the hospital every Wednesday for two hours and then again to this other one run by a charity over in Kingswood, Bristol, every Thursday afternoon. Today was lovely at the hospital playroom where they had outside 'artistes' entertaining the children with art, crafts and lots of music. The team were very talented at playing instruments as well as making songs up on the hoof. Fab morning and lots of fun for Leo and the other children.

After tomorrow, Leo's immune system will be way down until late next week so quarantine is in force again to prevent risk of him becoming ill. I'd be lying though, if I didn't say we're expecting another hospital stay this time around as per the previous cycles. It's come to be what we expect so why change now! And it's not us being negative; it's a case of mid-cycle infections is what we know and have experience of so far so we don't want to be disappointed if it happens again.

Broccoli Sandwiches and Pirates

Leo's doing okay, just off his food which is to be expected. Bit strange when he's like this because he was such a good eater before this adventure started. His appetite not only changes from zero to some but the things he wants to eat changes from week to week so where he may have liked sweets and chocolate one week, he liked broccoli sandwiches yesterday! No doubt his tastes will change again next week as the chemo does it's thing to his taste buds and he may even develop mouth ulcers over time too.

He had great fun dressing up as a pirate today which was cute. We also popped out with Ainslie and Matilda today and Leo adores them both. He loves playing hide and seek with them and seeing Matilda smiling, of which she does alot at seven month's of age.

We have had confirmation of Leo's next tests which include an MRI on July 4th under a general anaesthetic and also a kidney function test, date to be confirmed. We'll then have an idea of what the chemo has done in terms of possible shrinking of the tumour and what we're facing looking forwards for the radiotherapy which starts August 1st or somewhere around then.

Home Sweet Home

Leo is home this afternoon and with plenty of energy - PJ and I wish we could have some! It's amazing Leo has so much energy and it's a shame we cannot keep up. He was so excited when Ken, Leo's nurse today, told him he could go home and Leo screamed "yes", and punched the air with a Tiger Woods flourish. I love moments like that. It must be horrid to feel semi-okay but have to have been in hospital for 14 days for an infection and then for chemo which made him sick all weekend. Having said that, every time he was sick, he immediately asked for and ate toast!

We tried to settle down to a quiet afternoon but that is pretty difficult in a shared house. It's great to be living here at Clic House, however, now Leo is home from the hospital and needs some quiet time and normality after weeks in hospital, it's actually quite tough to achieve this for him.

Clic House is a fabulous facility managed by an awesome and committed team, and it's a great place. Not just because of all the toys, en-suite bedroom for us to share and the locality to the hospital (about 12 min walk); it's also fabulous being with other families who totally understand what we're all feeling.

Once we have our car on Wednesday afternoon, I am going to try to take Leo out for an hour or two every day so as he's not stuck in the house all day every day, simply waiting for the next time his temp spikes or he needs chemo or his line bungs and plaster changes or bloods need to be taken.

The pictures on this post show Leo as he is today, once we arrived back at Clic House..happy, smiling and overall, in pretty good shape, I'd say! I am amazed that a 3 year old can deal with everything he's dealing with right now.

Sunday Bloody Sunday

Leo has finished his third weekend of IVA chemo so three down, six to go with the six weeks of radiotherapy to start in six weeks.

His haemoglobin is at 7.5 today so he's going to have a blood transfusion which takes about 4 hours and afterwards, he'll be full of energy and have pink lips and cheeks. The blood transfusion is the reason for the title of today's posting, just in case people get offended. My attempt at being clever with using a U2 song title...it is Sunday and Leo's having a blood transfusion. Got to keep ourselves amused!

There's another family who are also living here pretty much permanently, and they have four children with another on the way. The children who stay at Clic whilst Mum or Dad go to the hospital to see their unwell baby, are the perfect age for Leo to play with and try to achieve some sense of normality. Sara, their mum and I have said we'll do some baking this week and some nursery rhymes each day and things like art and crafts to keep them all occupied.

We are particularly keen to keep Leo calm this week whilst his white cell count drops towards day 8 of this cycle (next Saturday) as otherwise he seems to spike a temperature. Of course he loves attention and running around like a crazy monkey but we know it's not good for him which is why we hope doing a few structured things with the other children this week can help keep him on an even keel. Here's hoping!

Thanks again for all your support and best wishes, and also to all of you who have messaged from out of the blue!