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!

Marathon, not a Sprint

This last few weeks has totally reminded us that this adventure is a marathon, not a sprint. How Leo does not get completely mad being in the hospital is testament to how brave he is. Well, he does get angry at times but that's because he wants to do one thing, and we need him to do another..so no different to any other 'normal' three year old really!

Leo had great fun playing with his Big Grandad today even though he's not felt 100% due to the IVA chemo starting yesterday. He's also hooked up to fluids all day for 45 hours from Friday afternoon and so he's restricted from running around and scaring the nurses (like he was yesterday morning).

The way we need to think about things I guess is that this is week 7 and so he has now nearly completed two cycles and just started his third of nine chemo cycles. We're just two weeks away from his MRI and kidney function test. The MRI is vital as it will show how / if the tumour has been affected by the chemo so far. The kidney test allows the docs to see how /if his kidneys have been 'poisoned' by his treatment (poisoned is the word used by his consultant yesterday when he explained the tests!)

It also appears that Leo will need a blood transfusion again tomorrow after his chemo and fluids are done as his haemoglobin are less than 8 which means he's anaemic. Then after his blood, Leo will have lots of energy and will be able to come home to Clic House for a week of calm and relaxation after two weeks in hospital.

Proud

Leo is on great form today (writing this after midnight so talking about Wednesday) and even ate a whole bowl of spaghetti bolognese this afternoon. Doctors are happy with his progress on the infection front so it should be okay for him to have his IVA chemo starting Friday for 48 hours as per the protocol. Good news.

PJ and I are so proud of Leo and never a day goes by, when even as he throws tantrums and kicks out sometimes, that we don't thank the powers that be for him being with us. We're so privileged that Leo is our son and even though we're heading along this adventurous path with him right now, it's because Leo is who he is, full of spirit, that he's bringing us along with him each and every day. People use the phrase a lot about their children being fighters and we truly feel Leo is one of life's fighters. Proud is probably an understatement of how PJ and I feel about him.

Talking of how spirited he is, we were in a bank today where some workmen were making some noise. Leo responded by saying to one of them;

Excuse me, I am trying to sleep. Please could you keep the noise down?

Lots of laughter ensued and as a result, every time the workman's drill started, Leo did the same thing over and over! When we actually left the bank, not only was the workman able to get on with his work undisturbed, but I like to think he'd brightened a few people's days with his cheeky spirit!

He even wanted to buy chocolates for the nurses today. Picked them out himself and then gave them to the nurses on the ward on our return to the hospital with the phrase;

Don't eat them all yourself!

Cheeky, spirited, beautiful and yes, we're very proud.

Good news, good news, bad news, good news...

Good news...Leo's neutrophils came up from 0.05 on Sunday to 1.02 yesterday (Monday) and 7.01 today so that's awesome. The GCSF has worked a treat and done what they needed to do by stimulating Leo's bone marrow to produce the white blood cells needed to fight infection. Now they've done this, his chest looks better and he's started to perk up a bit.

Good news number 2...Leo can start chemo as planned on Friday for 48 hours as a result of him being better.

Bad news...his stay at hospital will be until at least next Wednesday so 17 days in total for this visit as he needs to have 10 days of the antibiotics he is on and they have to be given via the IV as they're more effective.

Good news number 3...Leo copes very well with being in hospital. He actually quite likes it I think, probably because he has spent more time there since returning to the UK than here at Clic House or anywhere else. Plus he probably now feels comfortable there as he is in control and knows what's going on. It's amazing how quickly three year old's learn to cope and get on with things.

Thank you so much for all your messages and comments on the Blog over the last few days. We've also had lots of packages arriving for Leo at Clic House courtesy of lots of wonderful and generous people including Miss Gillian, Leo's Head at King's College Murcia and some beautiful ifts from PJ's lovely cousins Down Under. We're trying to stagger the opening of such lovely gifts as he is spoilt rotten right now, and rightly so! However what we're doing now is keeping the gifts back so as he can open them when he has earned enough stars on his Rewards Chart. He gets stars for letting the doctors and nurses do what they have to do, plus for doing his teeth twice a day, having his ob's done etc. So if you don't get an immediate response when you've sent a gift, it's because we're waiting for stars on the chart!