Go Blog Yourself

I’m writing from the oncology ward of  Children’s Hospital.  Waiting for the results from our midnight CT scan.  Waiting.  Waiting.  Waiting.  After a week of worsening diarrhea, blood clots and serious pain, Tuesday was readmitted and treatment is on hold.  One of the chemotherapy drugs, Irinotecan, can cause serious diarrhea.  Her poor little GI track is raw.  After a few abdomianl x-rays they are thinking it could be pneumatosis or radiation edema.  The 3-D ness of the CT scan should rule these out but wont necessarily diagnose anything.  Again, we wait and see.  I can’t get past the fear of it being new or more or growing tumor.  Fear is such powerful thing.  I did try to use all of my Dr. Mom skills to read the CT as it was happening.  This is about as likely as flipping thru the entire dictionary in 6 seconds and trying to catch the definition of, lets say, pneumatosis.  Not much luck.  What we do know is that on Thursday last, the tumor had shrunk by 75 %!  Can I get an Amen from the Amen section?  Not bad for a “resistant” tumor.

“Show marked and significant reduction in tumor burden.”

Tuesday will have a CT today at 1:00.  The results of this scan will determine our future.  Tuesday’s future.  Please summons all your prayers, healing thoughts and good energy and send them on the breezes that blow directly to The Children’s Hospital.  Charley is taking Tuesday to her appointments and I’ll be getting the house ready for Saturday’s new floor party.  Grab your tool belt and head over for some beer, warm food and good karma and while your at it, slap down a few planks of wood or a new toilet.  Oh, and if you are sick, stay the hell away.  :)

I know this title is not funny but it makes me think of a friend of mine, Mason, from high school and it makes me laugh.  It’s refreshing to still want to laugh for no real reason.  Especially after the last few weeks.  Today Tuesday finished her 10th of 10 radiation treatments.  The next step is to re-scan and re-plan and then start radiation again in 10 days at smaller, more precise field.   Her Radiation Oncologist told me today that she has had a wonderful response to treatment, which we assumed to be the case based on the way Tuesday has been acting.  She hasn’t needed pain medication this week and has been in good spirits.  On the other hand, she is throwing up everyday, is down to 18 pounds and is really wiped out.  Radiation is doing it’s thing, but it’s knocked her down harder than anything up to this point and it’s really hard to watch.  We are really looking forward to the little break.  The staff at Anschutz is lovely and caring and Dr. Liu is wonderful, but let’s be honest, it is one seriously depressing place.  It is primarily adults.  Very ill adults, and watching kids fight cancer is a whole different animal.  It breaks my heart seeing so many suffering.  Our days start very early, administering IV chemo on the drive in and then holding her while they put her under anesthesia.  Every day.  It’s just surreal and by 9:00 am, we are already emotionally drained.  This has been the most challenging part of her treatment.  For all of us.  (Minus that pesky 33 days in the PICU) And yet, here we are, keepin’ on keepin’ on and Tuesday continues to surprise everyone.  We will be in clinic for chemo (Irinotecan) everyday next week and she will have another CT scan on Wednesday or Thursday.  These scans will point us towards our next step.  MSKCC?  St. Judes?  Texas?  Vermont?  The research continues.  We know that right now we are in great hands here.  That Dr. Ashley, whom we adore and trust, is working her tail off on Tuesday’s behalf.  We know that she and the rest of Tuesday’s team will help us make the best decision for our little girl.  We pray that God will continue to use Tuesday to change lives.  Inspire and restore hope.  Surprise and bring smiles to all who meet her.  She’s such a honey.  Stay positive with us.  Pray.  For a much smaller tumor, or heck, no tumor at all.  Wouldn’t that be awesome?

Killing time

Killing cancer

1 hour