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!