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...

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.”