Saturday, May 31, 2008

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.

Friday, May 30, 2008

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!

Monday, May 26, 2008

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.