The Starfish Story

I've just received this email from a friend with whom I had some great times with over a decade ago and so they've never even met Leo! However, he thought I'd like this little story and also his offer of some funds for the Team Leo Disney Fund (name still to be confirmed).

So here's the story called;

The Starfish Story

One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean.

Approaching the boy, he asked, “What are you doing?”

The youth replied, “Throwing starfish back into the ocean.

The surf is up and the tide is going out. If I don’t throw them back, they’ll die.”

“Son,” the man said, “don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference!”

After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf.

Then, smiling at the man, he said…”I made a difference for that one.”

Question after Unanswered Question

Leo was quite sick today with his chemo and also much more tired than he's been on other cycles, apart from the first one which feels like years ago now. If it feels like that for us, how on earth must Leo feel?

We're advised there's no point reading into how Leo reacts to his chemo, although you kind of half-hope that if he's more sick and tired, perhaps the chemo is doing more to the kill the cancer? Or could it be the opposite of that? Could it be that if he's unwell with it, that the chemo is not doing anything but making him sick? So many questions and unfortunately, no real answers at this stage.

We've 'google'd' the doc at the Royal Marsden who will be in charge of Leo's radiotherapy and both PJ and I are really pleased that we're going there. Dr Frank Saran has loads of experience and is one of the best in the UK at the best cancer hospital in the UK. So hopefully this all bodes well for as good a treatment plan for Leo as can be possible. Who knows? Yet another question which no-one can answer for us.

Update

Leo is doing okay today with both the infection and chemo. He's been very sick this evening but usually once he's sick, we're able to sort his anti-sickness meds out to ensure the sickness does not come back. It's all a matter of timing really!

Thinking we'll still get the house sorted to rent here in Bristol so as we can have some normality before the temporary relocation to Surrey and then at least PJ can come back to start work in September, if possible / if Leo is well enough. I think it will also be easier to sort out ahead of going to the Royal Marsden, rather than waiting until we come back as we don't know how unwell Leo will be when we come back, or even when we'll be coming back. It should be six weeks in total but who knows what will happen?

I've also heard from a old friend from senior school who plays in a few different bands and he's offered to do a couple of charity gigs to raise money for Leo. PJ and I have decided to definitely aim for a trip for Leo to Disney World so as he can have the best life possible from here on in. No-one knows what's around the corner so we're going to aim for the best in everything from now on.

Strange Week

No updates for a couple of days for a few reasons. Leo has another staph infection in his skin at the exit of his Hickmann line. This means that as it's his third line infection and this has happened every cycle of chemo, the line will definitely have to come out this time.

So here's the plan...line stays in for IV antibiotics for a few more days and also his fourth cycle of chemo which starts tomorrow afternoon. The line then comes out Monday or Tuesday, or at some point soon. The docs then leave the line out for a week or two to give Leo a chance to get better, and if they introduce another line too quickly, the staph infection / bug could enter his body more easily as you're introducing a foreign body into the system. So the line comes out via a general anaesthetic and then back in at some point, again under a general, before the next lot of chemo in 3 weeks.

Had a good week other than that. Had been hoping to get through this cycle without an in-patient visit to the hospital. The Christening on Sunday was lovely and it was nice to see my brother, Andrew and his wife, Julia so happy and proud of their beautiful daughter, Sophie. I also caught up briefly with some old school friends of Andrew's and one, Scott, is wanting to do some fundraising for Leo if he secures a place in next April's London Marathon. So we've decided that we will now aim for a trip to DisneyWorld, Florida as soon as we're able to. Being at the Christening without Leo and PJ felt terrible; how many more family events will one or other of us have to go to without Leo?

Marie and Jack came over from Spain and Leo just loved it. Jack and Leo just slotted back into the swing of things so easily, and it was amazing and heart-warming to see Leo playing nicely with his best friend; there was definitely a sense of normality except for the visit off to A&E again last night.

We took advantage of the lovely weather on Tuesday (yes, sunshine..remember sunshine those of us in the UK?), and took a good stroll around Bristol Zoo and then visited the park at Blaise Castle with the boys in their pirate outfits. No guest blog writing from Marie as we've kind of had our hands full with our boys, shopping and the hospital, of course!

Not sure if I updated about the Royal Marsden but Leo will definitely be off to the specialist cancer hospital in Surrey for his six weeks of radiotherapy, starting at the beginning of August. He'll then come back to the Bristol Children's Hospital to complete treatment, as long as he's well enough to do so. It also looks like Leo will definitely be having the additional maintenance chemotherapy regime of daily chemo for six months as the aggressive nature of alveolar rhabdomyosarcoma leads the docs to think more chemo is the best way to treat it and maximise Leo's chances of survival.

So the house move is now on hold as we are off to Surrey for at least 6 weeks in 3 weeks time and then who knows what the future holds?

Update...Off to the Royal Marsden

Confirmed today that Leo's radiotherapy is definitely going to be at the Royal Marsden, the UK's specialist cancer hospital based in Surrey.

And that's about all I can update right now as I'm being instructed to put down the laptop and relax...yeah, right! Leo's best friend Jack and his mum, Marie (my best friend from Spain) are here to give us some sense of normal life...and it is actually working. Leo and Jack have just got on with things and held hands walking through Bristol Zoo and dressed as pirates at Blaise Castle. Another normal day then?!

Right, so tomorrow brings the first Team Leo Guest Blogger in Marie so all eyes to the ready! Update tomorrow, and more about our move to Surrey as and when we have it. If anyone knows anyone who has a spare apartment /house for rent for 6 weeks from the beginning of August, then do let us know, as long as it's very close to the Royal Marsden.

Love H x

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.