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.