Saturday, April 2, 2011

LP and Hallucinations

The LP is done and we are in mid-steroid/heavy dose chemo frenzy.  Crying, laughing, angry, sad, angry, crying, mad, hungry, screaming, crying, eating, confused, more crying...and so it continues.  The good news is it lasts for five to six days and then it is over.  The bad news it, LONG TERM MAINTENANCE goes on long term and is rather more ongoing when you are in the middle of it!

The actual day at the clinic was pretty standard: finger prick, blood-pressure, height , weight, temperature check, run through vitals and weekly history, provide new schedule for meds of the cycle, go to back to access port and find NO BLOOD comes out, counts actually COME BACK ON TIME, (not usual), Pentamidine (antibiotics) administered, try for blood again.....

Then we were taken to the Day Hospital across the hallway for the LP.  Sam was cranky at this point as he could not eat.

Leslie came by with the monkey Sammy has been 'taking care of' as part of his therapy..not interested today.  "He's feeling okay and doesn't need anything." was Sam's reply.  

Finally the anesthesiology team came in to take Sam down to the OR.  I had to stress how bad his cold continued to be, and they said they would try the procedure but take extra precautions and stop if they had to.  

Sam walked to the OR with no shirt, just as you see in the picture above...he got many comments about being "Mr. Muscle" etc. but he was unimpressed and fully focussed on the job at hand.  In fact, he was terrified!  I knew this due to our bedtime discussions over the previous few evenings, and the poor guy was now ready to bail!  

As we walked into the OR, Sam held tight onto me and said he couldn't do it this time...he was too scared.  Eventually there was me on the bed with Sam in my arms talking about Japanese food and his big party.  

Sam was calm enough to drift into a twilight state..I was told his eyes were open because he was given a different medicine this time (due to cold) and he was still awake but would not remember a thing.  
I knew this to be true as Jack had the same meds when he has his LP back when he had Meningitis...but I had been allowed to stay with him then and saw how Jack's stress was despite the meds...Jack remembers nothing, however!

I was told I could leave....I wanted to stay so badly...and Nana and I waited in the waiting room.  Within about ten minutes Megan, the Nurse Practitioner, came to tell us it was done and Sam was awake and in recovery.

We went in to see quite a sight!  Dr. G, who had performed the procedure told us Sam was the most delightful child ever!  Agreeing, but not sure why this was said, we went in to find my son tripping his socks off with a medical version of a PCP induced hallucination!

Sammy saw so much going on on the ceiling of the recovery room, we decided he was actually reliving  a Super Mario video game.....occasionally I would need to redirect the action so that the good guys (the stars) were winning against the bad guys (the walls) or else his heart rate went too high!  

Finally Sammy was back in the land of the non-tripping people.  Dr. G explained that Sam had been so nice and friendly when in the OR...and people on the PCP-style meds show their true colors when on it, so he felt Sammy was truly a lovely young boy!  

After and hour of lying down to avoid a headache, we went back to the clinic to try to draw blood so Sam could have his other chemo through the port.  Blood had to be drawn so there is no doubt they are tapped into a vein for the chemo to go into.  Two doses of clot thinning meds later, we had blood and the last of the poison  chemo was given.  

Sam had Methotrexate, Cytarabine  and Hydrochloride intrathecally, and Vincrisitine through his port.  he started his steroids and 6MP doses wonder the little guy is feeling so bad!  


  1. What an ordeal. Bless your heart and Sammy's, too!

  2. Managed to find my way in - at last! Poor lovely brave Sammy. The things he has to go through! And the things you have to go through, too! I have no words to describe how my heart aches for Sammy every time he goes through this horrid proceedure. And my heart also aches for you, my wonderful daughter. You're both soooh brave, and I'm constantly proud of you. Massive love, Mummy (Nana)

  3. Sending up prayers for your lil superman. May his super powers soon destroy the enemy....
    Hugs, Lisa

  4. Galen, Lisa, and my lovely mummy,
    Thank you for helping me through this. Sammy really is amazing in how he bounces back after such a rotten time. I admire him so much!
    Katy xxx

  5. Sending you strength and prayers Katy....You are an amazing lady and Sammy a true "superman"

    Maria Oliveri

  6. Hey Katy,
    Wow, that was some day you guys had! We all know Sammy is a wonderful little boy, nice to know he is still sweet even when drugged up :-D
    (thats good parenting shining through)
    Sorry I missed the coffee, nice to see you ever so briefly at the store.
    Good thing you know about the Mario games, it is a whole different language isn't it? Once you learn a few key words, you can talk as if you know what you're talking about! Keep up the good work super-mom.

  7. Yep!.... sound familiar. So similar yet so different. I've only left the LP when my husband was with Isa instead... Recently I go in, and hold her in position and talk to her. Hopefully using the time to give her subliminal messages....

  8. Grape Seed Extract kills 76% of Leukemia Cells in 24 hours, no side effects, GSE available at any vitamin shop/health food store:

    Curcumin (also available at same stores) helps make Chemo more effective:


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