Feeling lost, and a little defeated...

We've been in Philadelphia almost 3 weeks now, and what a crazy 3 weeks that's been.  Experiencing extreme emotions like we have done in that time really takes its toll on you.

Oscar is continuing to improve, we were moved out of ICU on Wednesday night down to the Cardiac Care Unit.  It almost feels like one foot out the door of this hospital!  The plans for a medical transfer (air ambulance) back to Belfast are being put in place, and we hope that with Oscar's slow, steady improvement, the final "yes" from doctors here is not too far away.  However, as much as we are looking forward to getting home, and especially longing to see little Izzie, the "goodbye" to CHOP and Philadelphia is definitely a painful one.  The realisation that the door is closing on the hopes and dreams we came here to fulfill, that is hard.

We were probably naive, we truly believed we could "fix" Oscar here, and give him the "normal" life he so truly deserves.  We were told before we came that immunotherapy mightn't be a reality for Oscar - we never really believed that.  This is the place that would make him better, take his pain away.  Take our pain away.

It goes without saying, the elation we felt when Oscar recovered from being critically ill, that really can't be put into words.  But now new emotions are surfacing.  We feel out of control - we felt in control when we worked hard to raise that money and buy him his life back, we could do that.  We feel lost - we don't know where this is going, more than ever we don't know what the future holds.  And we feel defeated - we were cheated of our chance to make Oscar better, once and for all.  These statements may not be factually true, but they are absolutely what we feel.

Please don't think I'm digging (once again!) for complements, messages of support, inspiring statements.  I'm definitely not.  And I doubt they would work right now anyway.  But this blog is a TRUE diary of Oscar's journey, and I feel compelled to make a record of our (almost) despair at this time.

The other thing I must note is our never-ending quest to figure out what Oscar needs, and make it happen for him.  That has not changed.  Fundraising will continue, full steam ahead, to try to ensure money is not the issue which denies him a shot at life.  We are back to the drawing board, and very much looking forward to fully assessing our new position with Oscar's fantastic and very supportive consultant back home.  We need some time to pick ourselves up, dust ourselves down, and prepare for the next step.  Whatever it may be.  As always, in the rare times that we feel deflated, we look to Oscar for courage to keep fighting.  He gives it to us in abundance!  I looked at our "TeamOscar" mailbox yesterday, and couldn't believe the fundraising efforts of many of you are still flooding in.  That inspires our fight more than any words of support ever could.

Final word to Miss Izzie this time - don't ever think you were left behind in all of this craziness, you weren't, you aren't.  We miss you so much, and can't wait to kiss your little face and feel your big hugs again!  Oscar tells us he misses you EVERY DAY, and that he is sad that you are not here, sometimes crying.  I've said before that nights where the 4 of us are under the same roof are the happiest times, can't wait to have them again Xx