So, today marks the 15th day here in the hospital.  Two full weeks down, and we still have no idea when we’re going to get out of here.  Penelope got her chest tube out a few days ago, but unfortunately she’s struggling to breath well on her own.  We thought we were making progress, as they’d been slowly weening her off of using Oxygen.  But, her cough seems to be getting worse and her Oxygen saturation keeps dropping.  They had to crank up her Oxygen levels again…so we took one step forward and two steps back on that subject.    Obviously, we’re not going home ’til she can breath well on her own.

Our oncologist told us that she’d start making calls to the lab today to see if/when the biopsy results will be ready.  It could be as early as today or as late as next Tuesday.  I’ll definitely put up a posting as soon as we know something.

Yesterday and today look to be pretty uneventful.  We’ve got all of the ‘big’ procedures done, Carina has been taking classes on how to care for a child with cancer every day while I sit with the baby.  There’s A LOT that goes into caring for a little one that has cancer.  Everything from keeping a close to sterile home, to her diet, to changing dressings on wounds, flushing out her Hickman’s catheter, giving sub-cutaneous shots daily, etc., etc.  I’m glad Carina’s school is working with her and allowing her to take the semester off without any type of penalty.  There’s no way one parent could work and do all of this.  It’s a full time job for sure.

I’ve personally been having a bit of a hard time the last few days.  Every morning when I wake up I expect to look over at the crib and see my little smiley girl standing up in her crib, waiting to eat Cheerios and watch Sesame Street.  But, instead it’s this poor, frail little girl that can’t even force a smile onto her face.  I keep thinking that the chemo’s gonna kick in and tumors will shrink and Voila!  Maybe my expectations are too high…I don’t know…when it comes to this subject no doctor can really give you a straight answer.  I’ve asked, ‘what kind of effect will the chemo have on Penelope’, – the standard reply is, “it’s different for every child”.  Which tells you absolutely nothing.  You don’t know if the chemo’s working or if she’s just getting sicker!  It’s really hard.

Penelope got another blood transfusion this morning (it’s still running actually), her blood counts were low, so we needed to get some fresh blood in there.  They are doing chest X-rays every morning to see how her lungs are doing since they pulled out the tube.  The surgeons review them daily and will make any necessary changes if things start to digress.  Fortunately, no one has mentioned putting the tube back in at this point – it looked like that thing really aggravated her.  They insert a tube about the size of your pinky finger in between your intercostal muscles and in between your ribs, then into the chest cavity.  So, she couldn’t cough, cry, laugh – any kind of movement caused pain.  So, let’s hope that we can keep it out.

Ok, gotta get back to work – hope you all have a great day and I’ll post more soon.

Oh!  By the way, thanks to everyone that’s sent me ideas for getting Penelope’s plight into the media.  I’ve been swamped with work and trying to raise funds, so please accept my apology if I haven’t replied to you yet.  I have a few dozen emails to get out, a few quotes and a few invoices, then a meeting this afternoon.  So I’ll try to catch up with everyone this evening.  On that note, I need to put together some type of system to organize the ideas, then set up action plans for each.  I’m working on it though!

Best

Aaron