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!