Monday, January 11, 2010


I am not really sure what the purpose of this blog really is.  Sometimes it is my therapist, a way for me to vent;  other times it is a way for me to tell my friends and family what is going on; it is also a record of events for us to look back on one day and realize we 'survived'!  Today I needed it to be a record of procedures with dates and times so I could relay information expertly to the doctors as failed miserably :( 

Sam continues to be in the hospital and has spiked two fevers today, despite reaching the 500 mark for his ANC.  I came back after weekend relief to the news that he might stay longer.  After the fever spiked with me, I asked to speak personally with a doctor.  One came remarkably promptly (finally) and she was very open to working with me to come up with good answers to my questions.  I needed to know why Sammy is still having fevers even though he is on hard core antibiotics and only has a cold.  The doctor recognized this as a fair question, albeit one which I have been asking for a week now, and she asked about his body in general.  I commented that his pee was particularly stinky, just as it always is in hospital - I put it down to the junk they were pumping into him.  She felt that it might be wise to do a urine sample...can you believe this is the first one they are taking?  So Sam dutifully peed into a cup, and it sat there for about three hours before being collected...not unusual...they had better not say it is not usable now!

About an hour or two later, two doctors came by to examine Sam and listen to his chest again.  His cough and cold are worse and they asked when he had last had a chest X-ray.  Oh my goodness, I froze...I remembered the stroller, him shaking as he stood there having the X-ray taken, the "all clear" results; but I couldn't for the life of me remember when or why he was having an X-Ray.  As I talked with Brian on the phone, who also was not sure, I realized I could check this blog...surely I wrote about something like that.  Then, during the conversation over the phone, things started to come back to be in a hazy mist of blurriness (yes, I meant to over exaggerate)!  Needless to say, I checked the blog and it is definitely sans this event.  Not helpful at this point.

So here is what I do remember...
There was a Monday in December (how's that for accuracy) when I took Sammy to the clinic for an  extra visit due to chest pains and small pinprick spots. We headed to the clinic, saw Dr. Gorlick and he sent us up to X-ray to check for pneumonia.  I remember taking Sam down to the Ped X-Ray department in the push chair (stroller to my American friends), coercing him to stay still, try to stand (he sat in the end), and worried sick they could see the growth back in his chest.  All was fine.  It is strange how that escaped blogging priority.

So you see, I was not able to tell the doctors when Sam had last had an X-ray or why... really not me at all.  He's what I think:

I am blogging more for my own sake at this time...sharing things and expressing thoughts and emotions.  I am not  recording all the events and details as I had planned to do.  Why?  Because I often feel that I am unable to relive it again to blog it...just as I am not very forthcoming with phone calls or friends inquiries as to what is going on.  I feel too wrung out and need to not repeat for the twelfth time what has just happened that day.   I am afraid of losing the wonderful support we have had, but reality is such that I don't have it in me smile is faded as I reply that we are doing as expected.  I hope to get it back.  But I also know people deserve more...especially my mummy who I usually snap at and hardly communicate with at all...not because I don't love her, I just can't cope with the additional issue of her illness and distance and my guilt at that etc.  I am closing into myself out of sheer exhaustion...only on month 4 of almost 3 years!!!!

So this blog might take a different route and become more a narrative of what is happening, logging counts and procedures and trying to avoid the 'me, me,me' of it all.  Sam, Jack, Brian, the Nanas and Poppa and other friends and family are all hit by this and my little self indulgent sanctuary is not providing the details I need for instant recall.

By the way, you know I will feel differently tomorrow so remember to take each blog entry as an entity in itself! ;)


  1. Hey Katy,
    Well, you are not alone, and I'm amazed that you have kept the smile on your face for as long as you have. (I thought it was some weird english thing, Rob is always smiling too). I know you will feel different tomorrow, so there! doesn't it feel good to get it off your chest, that you are hurting, and angry, and exhausted! Sometimes all the "well-wishers" can make it worse, it almost forces you to keep that smile on your face, when really you just want to say thanks, and slam the door. FYI, that's ok too. We all understand. We will not let you crawl inside of yourself, because that is not the type of friends we are, but we will give you the time and space you need. Maybe we should get some sort of signal for outside the house telling people to stay back....I'll have to think of something good...hmmmm I'll get back to you on that.

  2. Hey Katy,
    That's me rambling up there...Sue. I still havent started my own blog, I keep changing the name....


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