What To Do?

Thumbs Up!

Leo has been awesome this week with way too much energy but we're not complaining. Some things have been amazing such as Leo thanking his nurses and doctors today when he went to the hospital for his weekly Vincristine. Another lovely moment is his exclamation of...

"Thank you hospital for my medicines. See you next week!"

as we left the hospital this afternoon. Such pure thanks from a 3 year old is a moment both PJ and I relished.

The down-side of this week and especially the last couple of days has been this incredible urge to ensure everything which can be done, is being done. We desperately want Leo to be in the right group of 50% and so we've turned to all sorts of experts across the globe for their opinions. The only problem now is deciphering their views and getting past the experts' different opinions and motivations, as well as keeping our personal emotional drivers in check.

Do we send Leo to the USA for ground-breaking proton radiotherapy or do we just keep things as they are and just live with what will be? Emotionally, our hearts are saying one thing and then a new email arrives from another expert whose argument or advice once again sways your head and your heart into opposing directions, yet again and probably for the 10th time that day.

It's so difficult to know what to do as it's practically impossible to make a decision where parental emotions for your beautiful , bright 3 year old do not come into play.

If the cancer were not so rare, it would make these types of decisions so much easier as there'd be far more clinical evidence from which one could make a considered decision. One of the options could be proton radiotherapy but it's not a proven treatment...it's by no means experimental but it is impossible to find any clinical evidence as it's so relatively new, the only 'evidence' is anecdotal. We did have an abstract of a paper written by Swiss experts emailed to us by Leo's doctor this afternoon about proton radiotherapy. As soon as a paper starts talking about children dying, you immediately switch off and no capacity of rational thought can enable you to make any type of decision.

The most difficult thing is not being in a position to feel as though you are doing the right thing. And in years to come, the "what if?" question will always be there in the background if / when the cancer recurs.

You may have guessed from the tone of this post that we're finding things that much more difficult this week. That was probably always going to be the case as there's only so many weeks you can get through things on relatively no sleep, ready meals and no place to call home.

The great thing though is Leo has had another good week in terms of sickness and energy, and so we count our blessings whilst we can.

New Photos and Leo's Wiggly Worms

Just wanted to explain the new photos...

You'll see I have deliberately left in un-edited pictures which clearly illustrate Leo's Hickmann Line entering his chest and at the end of the line are two little 'wiggly worms'.

PJ and I had a very quick conversation about whether to edit the pics, but we were both in agreement that it's vital we show things as they are.

But it's also important to say that the line does not hurt Leo and he can run around and do most normal things, just like any other active 3 year old. The only things he's not permitted to do until it's removed at the end of his treatment are swimming, playing on bouncy castles, no deep baths or scuba diving (!) and going down slides on his tummy. It cannot get wet due to infection risks and it's vital it does not get pulled out.

He has a 'sleeping bag' for the wiggly worms to sleep in when they're not having a drink (i.e. medicine) or they're not being used to painlessly take blood to check on his white cell count etc. The wigglies also have names...blue-y and yellow-y....as they have little labels at the end of each one so as the doctors and nurses can differentiate between them easily.

Leo got used to his wigglies very quickly and they do not bother him at all!

So hope you enjoy the new photos.

Family; Far and Wide

We've had so many wonderful emails today from family across the globe including Colorado, Southern Ireland, Dubai and Murcia! What did we do before email?

One of the emails was from Miss Gillian, the Head of Leo's school in Murcia. He settled very nicely into King's College in Murcia and it's made a massive impact on his life. We moved to Spain to help decrease a chest problem he had which made him blue around him mouth and gave him a cough which sounded like he smoked 40 a day. Within a few weeks, his cough had gone. The warmer climate allowed his allergy to moulds to clear up and these moulds are prolific in the more damp climate of the UK so we're hoping they don't return as it could be even more serious now his immune system is dampened due to the extensive chemo treatment.

However, what I wanted to say was that our aim for Spain was for Leo's health to improve (ironic, isn't it?). His health did improve. And yet, so much more happened for Leo over there, than can be purely written here. To think that King's College had such an impact that he would cry if he could not go at weekends, or if we said he could not wear his uniform at weekends!

King's College has also provided Leo (and PJ and I) with some lovely friends in the Pre-Nursery class with the amazing Miss Cara, Miss Jill and Miss Amanda as his teachers. He often speaks very fondly of his friends but especially about Martina and Lexi (both girls!), that it's sad he cannot be there on the days he is well in between his treatment. It would allow him to enjoy an element of normality amongst the crazy, unrelenting world of chemo, doctors, murses, blood tests, temperature checks and being wrapped up in cotton wool by a now, over-protective mother.

The awesome thing now is that King's College are going to do some fundraising for Clic Sargent, which says alot about the staff and students there, as well as their families. Miss Gillian, Leo's Head at King's College, described Leo as a vital member of the King's College family, and that's the key phrase. The school community at King's College is much more than just a bunch of young children, their families and teaching staff. It is family and one day, we hope Leo can return and build on the fantastic start he made to his time with this wonderful family. Indeed he talks of his friends there as brothers and sisters; now how many people can say that about their school?

Members of Team Leo Arise...

and you can count yourself into Team Leo if you're reading this! We've been overwhelmed with extreme acts of kindness and beautiful emails and messages from all over the place over the weekend. This blog is doing it's job in getting information to you but also, over time we hope it will also serve to help other families who find themselves in the same situation.

Leo is doing so well today with plenty of energy despite only succumbing to sleep at about midnight last night. We were surprised the England v. Trinidad & Tobago football game did not send him to sleep!

He is off all food and drink today, and even not drinking milk. Even before this all happened, we knew he was under the weather if he stopped drinking milk, so PJ and I need to keep a very close eye and his milk intake and encourage him as much as possible to eat as much as possible.

The nutritionist even said to give him sweets and chocolate if that's what he wants. As parents though, this advice leaves you in two minds. You desperately want your child to eat good, wholesome and healthy food, but also want him to keep up his calorie intake regardless. We'll see how it goes over the next 24 hours...

"PJ to the rescue"

"PJ to the rescue", Leo screamed, as one of the boys staying at Clic House needed help getting down from the climbing frame in the garden today.

Just as I was about the leave the house to head down to spend the day at the hospital with Leo, PJ called to say that Leo was doing so well on his chemo, that he could come home! We were really pleased and surprised considering how poorly he had been last time. But we are not expecting it to be this 'easy' every IVA cycle. We're learning slowly, but definitely surely, that every day can and probably will be different so never expect things to continue as they are.

Leo and I have spent a lovely afternoon in the garden at Clic House and also out shopping with my parents, which was so good. Not that the shopping itself was good as it's a Sunday and therefore very busy; it was lovely because it's the furthest Leo and I have been away from Clic House and the hospital for weeks and weeks. It felt a tiny bit normal and gave us just an inkling of normality.

The only bit we found tricky (except for his high energy levels, but we're not complaining) are the stares from other children and adults alike. Due to Leo's hair now nearly being gone, he looks like your typical 'chemo-kid'! Although to look at him running around the shopping mall, the only thing which would make you think that is his hair loss...oh, and the red ties around his neck of his bag for his Hickmann line...oh, and the scar on his neck where they operated to put in the Hickmann!

I hope I was not one of those people who stopped and stared, or nudged their friend or mum when a child went by with no hair. I really hope I wasn't, but then I guess it's unusual to see a child with a bald head so you cannot blame people really. And I apologise to anyone if I did ever do that as I now know how it feels. Leo was not in the least bit bothered and so that's good. If he's happy, we're happy. I am not sure what I'd say to, or do for him if he was upset, but I guess you find the words if and when you need to. If his bald head were all we had to worry about, it would be fantastic.

Had a lovely card from Leo's best friend in Spain and it read;

Leo
I
Love
You

And then inside it said,

From
Jack

To which Leo replied,

"Jack's my brother and I want to go back to Spain to be with him".

You will, Leo. But not for a while.

I also had a voicemail this afternoon from an awesome long-standing friend of ours called Ian. It was a beautiful message and all the more so as Ian made the call despite having lost his mother recently. Our heart goes out to Ian and his amazing family, and as PJ and I have said privately before, if we can be half the parents that Ian and Trina are to their beautiful children, we'll be very proud.

We're certainly really blessed to have wonderful family and friends all over the world who are sending Leo their best wishes and prayers, and we do our best to ensure he understands you are saying hello to him every day. I am sure if he could type, he'd probably natter on as much as I do and give you lots and lots of thanks!

Kindness to the Max

Leo is doing really well after a horrid evening of sickness last night as a result of this next cycle of chemo. Today, he's played basketball (if making PJ run around after the ball due to comedy throwing of the ball, anywhere but the basket!), plus played football with PJ trying lots of tricks to show off you never lose it (apparently!) So if Leo can tolerate his chemo like this each time, it'll be amazing. After our concerns on Thursday night about how to explain that he needs meds to make him well in the long-run, but that they'll make him feel grotty in the meantime, we're pretty pleased but tomorrow's another day.

On returning to Clic House this evening, I had the most amazing email from Dawn, one of our tremendous friends in Spain. We miss her family dearly and Leo constantly talks about Lexi, Dawn's lovely youngest daughter, with whom Leo goes to nursery. She emailed to touch base but also to say that her and our best friend Marie had been talking about doing something to raise money for Clic Sargent. Yes, if you know how to make me cry, that email was one way! How lovely that even though we're here in the UK, Leo's friends are still thinking about us and so much so, they'd like to do their bit to help.

This prompted me to set up a fund in Leo's name with Clic Sargent where all proceeds go towards funding the awesome work they do across the UK for families like ours with a child with cancer. Putting the fund in Leo's name just means we can all have a direct focus when we're raising funds for Clic.

Clic Sargent nurses and Clic play specialists deserve to become saints for all their help they provide families just like ours. Leo adores Paula at the Bristol Children's Hospital, who works as a Clic Sargent Play Therapist and she's over-worked as they're five staff down due to maternity and all sorts of other reasons. Children like Leo need to play and they need people like Paula who can help him to get his head around being unwell and how we need to treat his cancer. She has spent loads of time with us as a family and always had time for us despite being torn in so many directions.

So fundraising for Clic Sargent will certainly be one of the focal points for PJ and I to help give us some strength and feel as though we're doing at least something to help provide vital services for children just like Leo and their families.

It's going to take a week or so to set up the fund for Leo so once it's all set, I will post the details here and hope we can raise as much as possible for Clic Sargent. In fact, Richard Branson's Virgin has selected Clic as the Virgin London Marathon's official charity for 2010, so guess it's time to get our running shoes on.

More a Thunderstorm, Than a Cloud

Leo's prognosis has changed today and it's cast a thunderstorm over his future, more so than the cloud which was there when this all first happened.

Unfortunately, the biopsy results have now been examined by four people across the globe from Great Ormond Street to specialists in the USA, and it's been confirmed the tumour is alveolar rhabdomyosarcoma as opposed to embryonal rhabdomyosarcoma.

Alveolar rhabdomyosarcoma (ARMS) is much more aggressive and so luckily with Leo, it's not spread as shown in the batch of tests such as MRI, bone scan and bone marrow exam of a few weeks ago. However, his chances of remission drop from 80% to 50% so he basically has a 50% chance the cancer will come back.

Plus we've the option to continue a maintenance chemotherapy treatment protocol for this cancer tumour once this current protocol is completed which would see Leo having daily chemo for six months. So finish this lot in October or a little later if things slip due to illness etc, and then another six months of chemo every day, but it's not a decision we need to make just yet.

And thankfully, given Leo's age, he does not need to worry himself about these things. He's done lots of painting and playing this week, although he does think it's his birthday pretty much every day due to all the presents he's being given. So we've started a sticker chart with him so as to keep his behaviour on an even keel instead of the times he slips into spoilt child and we will probably set up a donation website to help raise funds for Clic Sargent, which is the awesome UK charity for children with cancer and / or leukemia. They part-fund nurses, a professor and play therapists across the UK plus help families of children with cancer by offering a 'Home from Home' such as the one we're currently able to stay in until we find somewhere we can call home.

No doubt there are more storms on the horizon but it's how we deal with them which will determine how we get Leo through this.

Dilemma

How do you tell a three year old that tomorrow (or rather later this morning), they're going to hospital to have medicine which will make them better in the long run...but in the short run i.e. for 48 - 72 hours, it's going to make you feel very sick and tired?

I guess the dilemma for us as parents is do we tell Leo that the chemo he needs over the weekend is going to make him quite poorly? We don't want him to equate having to go to hospital with him being given meds to make him sick. The other regular visits for blood, or the short push of Vinc on a Friday should be relatively pain-free and quite fun for a 3 year old who can be distracted by the painting, drawing, colouring, play-doh etc etc. But in the meantime, every 3 weeks until the end of October, we need to take him to hospital to make him unwell, albeit to make him better over time.

It's a dilemma PJ and I have thought about constantly both as individuals and together this week, and we still cannot fathom a way to tell Leo. We're both of a mind that Leo should know about what's going on i.e. he has a baddie behind his eye which needs to be made better. So that' the first thing, but now we need him to understand that to get better, he needs to be sick first!

He asked us this morning if we can go back to Spain tomorrow as his friend Jack is saving his old Spiderman bike for him. I said we'd go back soon and once his baddie is better. Leo screamed and kicked off that he didn't want his baddie to be better, he just wanted to go back to Spain tomorrow. It's heartbreaking but then thank goodness, Leo is only thinking about Spain and not worrying about all the things we're all worried about!

To Eat or Not to Eat?

Well, the easy answer is not to eat as Leo has gone off his food this weekend. It's always been a marker as to whether he's not quite feeling right as to whether he continues to drink milk and he's even been on and off that all weekend.

He did manage about fifteen mouthfuls of pizza so at least his mouth is not too sore so perhaps it's more that food tastes completely differently and his jaw aches a little, both of which are side effects of one or all three of the chemo drugs.

Had a lovely afternoon with my parents and they took Leo and I out for lunch where he behaved like a monkey on speed! Not sure if that's because he's being spoilt left, right and centre or because of the drugs he's on, or perhaps a bit of both. I am definitely softer on him but actually he's turned into a mummy's boy since I had my op and all this happened so who knows!

We've come to some conclusions on life and where we're heading to and we're proactively sorting out work and housing this week with an aim to have both sorted within the next 14 days. It may be a tough timetable but I think with a proactive attitude, we can do pretty much anything.

Having fun and a bit of normality

It's a Bank Holiday here in the UK so typical rubbish, grey weather today. But yesterday we spent the afternoon with all of our old friends over in Bath which was so lovely. Nice to see everyone and so nice to see Leo having fun, and lots of it, with Maisie. She's just 3 months older than Leo and they get along so well.

When Leo told our friends we were going to Spain tomorrow (?), he said his favourite thing in the world was Jack and swimming in Jack's pool. It was so sweet but made me sad at the same time, because how do you explain to a 3 year old that we won't be able to go back to Spain and our wonderful lives for quite a while. It is very heartening though that he still feels so warm and happy about our experience in Spain, so when it comes to moving back, at least Leo will be 100% behind us! But he'll be at least 4 years old by the time we head back.

I also didn't realise we have a famous person in our family...Maisie was watching the F1 from Monaco yesterday and at the winning presentation asked her Daddy..

"What's PJ going to do with that trophy?"

You've guessed it..she thought Lewis Hamilton was PJ!! Not only am I wondering what he's done with the trophy but where's all that cash?

We had planned to stay at our friend's which we had thought would help Leo with a bit more normality but over and over, he kept saying he would only put his pyjamas on at Clic House. So we got a cab back to Bristol to stay at Clic House (and he fell asleep in his t-shirt anyway so no pyjamas); PJ and I were pleased Leo feels happy to want to stay here at Clic House as it must be a bit odd for him either staying here or at the hospital.

This morning when Leo woke up, he pointed to his pillow and said,

"All my hair is coming out; look, it's all over my pillow".

I explained that all his hair was going to fall out and then it'll grow back but his response was so sad. He said he didn't want it to fall out as he liked his new haircut! Bless him!

Seeing my parents today and PJ is going to have a well deserved siesta this afternoon while we try to entertain Leo. My dad has not seen us for a couple of weeks so no doubt he may find it hard with Leo's hair being nearly gone, but at least Leo is well today. The only thing wrong currently is he won't eat and so we have to be careful that he hasn't got any mouth ulcers as they can become easily infected. Plus he needs to put all the weight on which he lost in his first round of chemo when he stopped eating for 5 days. When he went into hospital he weighed 15.2 kg and one week after starting his first IVA chemo cycle, his weight had dropped by 2 kilos to 13.2 kg. So we've been advised to give him cakes and sweets and other high calorie foods but he can't have cakes due to his nut and egg allergies, and then he won't even eat sweets right now!!

Thanks for your messages and texts this week and I apologise to those of you in our Spanish family who unfortunately have massive mobile phone bills! So one task for me this week is to explore cheaper ways for us all the talk on the phone so we can keep in touch but without bankrupting ourselves.