Learning Opportunities

Had a tricky but interesting day at the Royal Marsden Hospital in Surrey. Felt strange being somewhere new for us so Leo must have felt even more worried about things. His doc, Frank Saran, is awesome and we totally trust him. He is just one of those chaps you trust immediately. Just as well as we kind of have to really. Not much choice. He asked if we needed to be 'sold' on radiotherapy to begin with, and neither of us said yes, but then as he spoke and told us about long term effects, it's clear that even if Leo beats this thing, his life won't be a walk in the park. We've had a crash course in effects and late effects of radiotherapy today and both our heads are spinning and probably will be for a while to come. I catch PJ just shaking his head every now and then at the prospect of things to come.

There's a very high risk of losing eyesight to his right eye due to the need for radiation to the optic nerve as the tumour was compressing on it initially and so they have to treat every area affected when he was diagnosed with a 2cm margin so that includes the brain, carotid artery, pituitary gland and eyeball. We have to ignore the shrinking of the tumour this far as all areas which were present or affected when we took Leo to the hospital initially have to be treated. As we've previously been told; the tumour is like a wave - when it hits the beach and then recedes, it leaves behind things that in this case, an MRI will never be able to show you. So the areas which look like the tumour has shrunk away from may still have dormant or live cancer cells not visible by any method available.

Other high risk stuff includes risk of stroke in his 40s, up to 4% risk of brain tumours in his early adult years and a significant risk of slowed learning due to the radiation to the brain. So just as well PJ and I are both so keen on teaching and learning outside of the classroom already - indeed, Leo asked Teacher Daddy, as he called him, to take him to 'school' in our new lounge on Sunday so he could do some learning! It was so cute.

On the journey to the hospital this morning, we heard the most awesome song which was a chilled-out backing track with a US-accented, deep-voiced man reading the following words. And as we heard each line, PJ and I just kept nodding and saying 'that's true..that's so true' to each phrase. We've decided therefore to locate it and listen to it daily, so we keep in mind the important things and let the other stuff slide!

Hope you enjoy...

Artist (Band): Baz Luhrmann

Ladies and Gentlemen of the class of '97.
Wear sunscreen.
If I could offer you one tip for the future, sunscreen would be it.
The long-term benefits of sunscreen have been proved by scientists whereas the rest of my advice has no basis more reliable than my own meandering experience...
I will dispense this advice now...

Enjoy the power and beauty of your youth; oh, nevermind, you will not understand the power and beauty of your youth until they've faded.
But trust me, in 20 years you'll look back at photos of yourself and recall in a way you can't grasp now, how much possibility lay before you and how fabulous you really looked.
You are NOT as fat as you imagine.

Don't worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum.
The real toubles in life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday
Do one thing everyday that scares you.

Sing.

Don't be reckless with other people's hearts.
Don't put up with people who are reckless with your's.
Floss.
Don't waste your time on jealousy; sometimes you're ahead, sometimes you're behind.
The race is long, and in the end, it's only with yourself.
Remember compliments you receive.
Forget the insults.
If you suceed in doing this, tell me how.
Keep your old love letters. Throw away your old bank statements.

Stretch.

Don't feel guilty if you don't know what you want to do with your life.
The most interesting people I know didn't know at 22 what they wanted to do with their lives; some of the most interesting 40 year olds I know still don't.
Get plenty of calcium.
Be kind to your knees, you'll miss them when they're gone.

Maybe you'll marry, maybe you won't.
Maybe you'll have children, maybe you won't.
Maybe you'll divorce at 40.
Maybe you'll dance the funky chicken on your 75th wedding anniversary.
Whatever you do, don't congratulate yourself too much or berate yourself either - your choices are half chance, so are everybody else's.

Enjoy your body, use it every way you can... don't be afraid of it, or what other people think of it... it's the greatest instrument you'll ever own.
Dance... even if you have nowhere to do it but in your own living room.
Read the directions, even if you don't follow them.
Do NOT read beauty magazines they will only make you feel UGLY.

CHORUS
Brother and sister together we'll make it through.
Someday your spirit will take you and guide you there.
I know you've been hurting, but I've been waiting to be there for you.
And I'll be there just helping you out whenever I can.

Get to know your parents, you never know when they might be gone for good.
Be nice to your siblings; they're your best link to your past and the people most likely to stick with you in the future

Understand that friends come and go, but for the precious few you should hold on.
Work hard to bridge the gaps in geography and lifestyle because the older you get, the more you need the people you knew when you were young.
Live in New York City once, but leave before it makes you hard.
Live in Northern California once, but leave before it makes you soft.

Travel.

Accept certain inalienable truths.
Prices will rise,
Politicians will philander, you too will get old.
And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble, and children respected their elders.
Respect your elders.

Don't expect anyone else to support you.
Maybe you have a trust fund, maybe you'll have a wealthy spouse; but you never know when either one might run out.

Don't mess too much with your hair, or by the time you're 40, it will look 85.

Be careful whose advice you buy, but, be patient with those who supply it.
Advice is a form of nostalgia; dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts, and recycling it for more than it's worth.
But trust me on the sunscreen.

CHORUS

Everybody's free. Everybody's free.

Long Day

Leo had a new line put in today and was quite upset about it - even more so when we took him down to theatre and this time we walked him straight into theatre, as opposed to a nice small anaesthetic room. He was trembling like mad in my arms and really very scared, and both PJ and I admitted we would have been the same. There were lots of people in scrubs in there and large lights and machines and things..poor Leo. He had some gas and air to put him to sleep initially and then about 90 minutes later we went down to collect him from recovery and we could hear him screaming from down the corridor. Sometimes he just won't let anyone near him apart from PJ or I. Mind you, we do have to remind ourselves that he is only three and a half.

We've only just got back so it's been a long day for us all, especially Leo. His chest kept bleeding so the nurses kept waiting for it to stop or at least recede before discharging him. Now we're home, it's funny to say he's being a typical man (have to look for humour where you can get it!); I keep offering him Calpol to help his neck and chest feel better but to no avail. What is it about men and pain-killers?

I have deleted the post of yesterday as it kind of defeated the object as the post itself probably offended people in and of itself. I've come to the realisation that there are just some battles you cannot win and I am not going to waste any more energy on things where nothing I do can change people's minds. Leo is my and our primary focus and so he needs positive energy around him 150% of the time. So that's how it is.

My mission is to keep Leo happy and comfortable and to get through this time in as good shape as possible. Feeling like I am going mad because others judge what we, as Leo's parents do, as purely being down to me or my thoughts, is counter-productive. What I will keep on record is that PJ and I are and have always been agreed on what we do with Leo and how we keep his emotions steady during the good days and the bad. Nothing has happened from the start of this where we've not been agreed, from where to buy lunch to what we should do of an evening to whether we need to call the doctors about his line infection.

So tomorrow's another day...off to Surrey for a clinic appointment so we'll find out more about radiotherapy and its overall effects. Had a good read of Leo's notes today (volume 1 - they're about 5 inches thick so volume 2 will start very soon, no doubt), and realised that as his tumour is alveolar, he will have the highest dose of radiation. The initial tumour was also 4.3cm cubed and those with 5cm cubed have a 10-20% chance of survival so we have to think him lucky he's not in that group.

We have another appointment at the Royal Marsden on Friday which includes planning the therapy with the actual machine they'll use as well as producing a shell cast for him to lie still in for each of the 30 sessions. He'll have a general anaesthetic for each session so he won't have to worry about wriggling about!

Chemo again this weekend, this time pushed back to Saturday as we won't be finished until it's too late to start back in Bristol as not sure how long it'll take to get back from Surrey.

Finally for the notes of support overnight and today, thank you sincerely; guess I lost sight of the caring love and support of those who know me, and know that we are only doing what any parent would try to do for their child in the same situation!

Thanks again.

Moving Days

We're off to the new house today but not toally leaving Clic Housebehind. Due to hospital appointments and Bristol's traffic, it's not been easy to pick up all the things we've bought and been given via Freecycle.org in one day. So we've been building up to it.

Leo is very excited about having his own bedroom, but more so he can play on his own, I think. He keeps asking if I can sleep with him! We'll wait and see, shall we? The key thing is we'll be able to make meals without thinking about other people sitting down to eat just as our dinner is cooked! And we also will not have to compare stories about childhood cancer with others! After nearly three months at Clic House, it's so important for all of us that we have some normality ahead of a busy week next week and an even busier six weeks from Aug 11th.

A new Hickmann line is being put in on Tuesday then we're off to Surrey for the clinic appointment on Wednesday, going to my parent's in Henley for Wednesday and Thursday night so we can be back in Surrey again for planning and the shell to be made under a general anaesthetic on Friday. There's no point us driving all the way back to Bristol in between these appointments otherwise it will only add to our tiredness, I think.

Hopefully then, we'll be back on Friday in time for Leo to start his next cycle of chemo. This is the be confirmed, but may need to be put back 24 hours in order for the shell and planning to be completed in time for the radiotherapy to start.

Giving ... and Receiving with Thanks

We've found many people very giving today as we've been given:

• Time, and lots (and lots and lots) of energy, from Leo's Uncle Jon who collected some furniture for our new house today, plus played with Leo for about 3 hours!
• A fabulous present for Leo from Uncle Jon and Auntie Karen - a lovely Spiderman pop-up house for his new bedroom (which Leo kept making Jon get into and sit in with him!!)
• Items of furniture, all of which has been given to us either my family, friends of friends or via the recycling / freecycling site www.freecycle.org
• Food, for Leo and PJ, at his mum's house this afternoon, which Leo loved so much - one advantage of being back in the UK is that Leo gets to see all of his grandparents much more.
• Efforts and lots of it from Cylla, the Clic Sargent Social Worker, who is doing much on our behalf to access info and grants for various things to make Leo's life easier.

Leo is full of energy and was even really nice to his doctor this morning, which makes a change. I think maybe he's cheered up because he knew he was coming home today after another couple of days in hospital. He's certainly wearing PJ and I out with his energy...are they sure it's only chemo or antibiotics they're giving him? I am amazed at how much energy he has pretty much day-in, day-out. Not complaining one bit, though!

End of the Line

So the day has come for the Hickmann line to finally be taken out. Unfortunately on Friday we ended up back at the hospital with another line infection, then called yesterday to make sure his antibiotics were ready and the ward had a bed for them to be administered. On that call, the doc said to bring a bag as they'd decided to finally take the line out and give his body time to get rid of the bug.

He now has a cannula in the back of his hand for today's antibiotics and another dose tomorrow, then it's back home to Clic for a manic week of trying to furnish the new house. We're keen to get the house sorted this week so we can have at least 7-10 days there before we head up to Surrey for the radiotherapy part of Leo's treatment.

Leo will then another operation to put another line in ready for the next cycle of chemo on Friday Aug 1st.

Back to Normal

Leo has eaten plenty of food this week and probably back to semi-normal since Monday night when he scoffed the spag bol to yesterday and today where he's eaten plenty of pizza whilst we visited with Mel, Charlie and Louis. It was nice to see Leo eating nicely as well as playing with Charlie.

Today was back to normal though, with another red, sore exit site on his chest so back to the hospital we went. Another journey into the Oncology Day Beds Ward and this time the docs have decided to give him 12 hourly antibiotics which means Leo can come home to Clic House in between. He's not unwell apart from the fact he has a red, sore chest and he sounds like he is getting a cold. I'd say he's more unwell this time than the lst two times he's had an infection so let's wait and see if the infection is dampened again by the anti-biotics or whether it takes hold.

Leo also had a good old cry today, which as I held him, it felt as though he was really letting go for the first time since this whole adventure started. If there were a 'Cry Whisperer' nearby as he cried, I feel they would have translated it as proper sadness, real pity and very down. I think Leo had realised his chest as he was crying was bad again and knew it would mean another visit to the hospital. He was all tired and clingy when we got there and it was the least energetic many of the nurses had seen him....until that is, he realised that he would not have to stay there overnight!

So tomorrow's another day and let's see what it brings...

Sausages x 4

Have you noticed a theme to this week's postings? Food, food and a bit more food. Today the food intake for Leo has been four sausages and a bread and butter sandwich, all washed down with a little milk.

A busy day for all. Leo had some IV antibiotics this morning at the hospital plus we had a meeting with the Clic Sargent Social Worker to discuss some forms for grants to help with costs towards increased travel, parking and overall living expenses. After that, off to Bath we went, to see Ainslie and Matilda, which I think because Leo had sausages there last time, that's what he wanted this time. He ate four sausages and was a happy and entertaining boy, which was nice to see; he enjoys Ainslie and she's always been fond of Leo. Then we drove back to Clic House to see Conor, Lily and Faye, who had come to play and have some tea.

PJ is still not well and is having a well-earned break to recover. If I had my way (stubborn), I'd make him stay at his Mum's for at least a week to give him a proper break but I think he'd stress too much about Leo, so we'll have to wait and see!

Tomorrow's another day...

Normality i.e. hospital, fun, garlic bread and Leonardo!

Hospital AM for IV antibiotics and the doc had a look at Leo's chest which is still not 'normal' and still pink, which points to some sort of infection.

Then off to see my sister-in-law Julia again for the final time on her stay in the UK as she's back to Dubai with baby Sophie later in the month. Leo had fun playing with Julia's friend's children up on the Downs in Bristol. Lovely afternoon albeit a bit tricky with Leo trying to get used to playing with other children again. Plus Rachel, Julia's friend who lives here in Bristol has three children who are lovely; the eldest is four so it was inevitable that she had soooo many questions including the opening question of 'why has he got no hair?' as soon as we walked in the door! The innocence and purity of young children is quite refreshing really and she was such a sweetie.

This afternoon included dropping PJ off at his parents has he's been sick all afternoon so has to stay away from Clic House for at least 48 hours and away from Leo also. Hope he manages to get some much needed sleep and rest, but he'll no doubt be worrying about us .... no need, if you're reading this, PJ!! Go to bed!

Dinner was a few chips and lots of garlic bread. Maybe not the healthiest food in the world, but food all the same. Followed by watching numerous Mutant Ninja Hero Turtles shows including one called Leonardo, who Leo keeps reminding me he was nearly called, but it would have been after da Vinci not the Turtle!

How Much Spaghetti Bolognese Can a 3 Year Old Eat?

Seriously...after over three weeks of not eating anything and only consuming milk, how much spaghetti bolognese do you think a 3 year old can eat? Lots and lots, is the surprising and very pleasing answer.

The docs have let Leo come home to Clic House this evening and we're back in the the Oncology Day Beds Ward for check ups and IV antibiotics on Tuesday and Wednesday (this is Monday's update but it's past midnight, hence the date stamp on this blog post).

After a day where Leo was sick alot and slept in between, we had thought he was going to be kept in and actually, he doesn't need to take up a hospital bed. We know that we have to get him back there if his temp spikes; and if we're at all worried, we can call the ward directly 24/7. The care for Leo is second to none and so we're confident he's in safe hands. Plus having him home and giving him some normality, despite him feeling rubbish, feels like the right thing for him right now.

We had a little scare earlier; Leo asked to go to the 'red' restaurant (Pizza Hut) as he wanted spaghetti bolognese and so after five nights in hospital, PJ and I could not say no. Neither of us thought he would eat a thing but three pieces of garlic bread and nearly two bowls of spag bol later, he spiked a temp of 37.9. If it had gone up by 0.1 degrees, and stayed that way for 30 minutes, it would have been back to hospital. It didn't happen, thank goodness and so back to Clic House it was! Phew! Keeping an eye on him through the night though (hence the late writing of this post) and he's back to Day Beds Ward for 11am.

We're also off to see our new house here in Bristol tomorrow, just before the hospital visit. Cannot wait! We're all quite excited. Leo even asked if we were sleeping at our new house tonight and I said we couldn't as we have no beds or furniture, to which he replied so beautifully;

"Clic House have beds actually, Mummy; we can have them!"

He wasn't being precocious, just very matter of fact. Clic House does have beds but they're Clic's, not ours! Once the deposit is sorted and the Housing Benefit done, we can arrange to buy furniture from places such as the Sofa Project and the Catholic Church also have things we can purchase. We're conscious that we want and need to make the house a proper home for us as a family, as well as for Leo on a personal level. He needs to feel secure and happy and so we're going to do all we can to involve him in our decisions, except we won't be taking the beds with us from Clic (even though they're extremely comfortable!), and we certainly won't ask if he wants to paint the place....it would end up red from top to bottom, inside and out!

The Snowball Effect...in More Ways Than One

The 'Disney Fund' is snowballing in that we've had another offer of some funds as soon as we sort things out and make it all official. PJ has looked into it and we need to set up a Company Limited by Guarantee so as it's all legal etc. We also will initially raise funds for the Disney trip, but if at some stage we need to pursue other, more pioneering treatment such as proton radiotherapy in Boston (if the tumour does not do what want it to and skip town), then we'll use the fund to ensure we are able to do all we can for Leo. Along the way, we're also going to raise funds for Clic Sargent who have and still are, an absolute Godsend for us and plenty of other children and families in similar positions across the UK.

PJ and I will be speaking with Leo's doctors tomorrow to find out when a good time would be for us to plan the Disney trip for Leo. I will also speak with the Christian Lewis Foundation who are a charity who help children like Leo to get to Disney so more details to follow.

Things are also snowballing as PJ is talking about throwing himself out of a plane, all in the name of Clic Sargent and with a parachute on his back, although he may split it with the Disney Fund. And I am trying to get in touch with all the old celebrities from both the sports world and showbiz whom I once knew who can help us organise a big night of celebration, dancing, singing, eating, drinking etc etc, and to raise some funds either towards the end of this year, or perhaps next year is a little more realistic...it's not as though we have enough to think about, is it??

Right now, PJ and I are feeling like we need to use our energies to focus our lives for the greater good. It's too easy to become marooned on Planet Cancer and so if we can use this energy to raise funds for Leo and support other children and their families, then why not? If ever there was a time when we felt that life is to short, now is it. Yes, we've moved to Chicago and yes, we've moved to Spain, and talked about doing so many other things. Now is a time for action and so if we're not motivated to take action now, when will we be?

The other final snowballing effect is it looks like we may be able to move into the house here in Bristol in the next week or so - as long as it's still available. It will be a very small step to normal family life but a step, all the same.

Finally, Leo's not done so well on this round of chemo. By that I mean he's been much more sick and much more tired, but very cute with it. He was pretending to be in school this afternoon and was having 'conversations' with Miss Cara (his fabulous teacher at King's College, Murcia) whilst also telling me to go to work! Do you think he's trying to tell me something? He's also managed nearly a whole jam sandwich which will be his first proper 'meal' for 3 weeks!

The docs have kept him in hospital after completing his chemo this morning as his line is still not so good; it's better but not 100% so it's a wait and see game right now. Whilst the decision had been made on Thursday to take the line out, as it's responded well to the IV antibiotics, perhaps we'll get away with it this time. I'd rather them not take the line out; not because of the two general anaethetics required to take it out and then put another one in. I'd rather the line stayed put as I don't want Leo getting all excited and thinking he's better. It will be awful to then have to tell him he needs another one and I fear it could set him back mentally. Sounds silly to say that about a three year old but his mind is just as crucial as the rest of it as we've learned over the past few weeks. We're on top of the mental game right now with him and he's in a good place. I think seeing Sophie, Andrew, Julia, Jack and Marie over the past weeks has boosted him immensely, plus the 'pillow /anger' talk PJ and I have had with him, and so we want to do all we can to prevent any cause for regression to the angry Leo we had seen before.

Anyway, tomorrow's another day...