Tuesday, June 24, 2014

So this is how it goes...One thing leads to another...sometimes it seems like an endless cycle.

The quiver and medicine bag are full.  Full of much magic and a variety of potions and spells and noisy machines.(Now the childhood cancer quiver is rather bleak and antiquated but the potions are better than they were.... but those are thoughts for another day. )

Best example would be Meb.  She is on 20 medications.  Of those, only 2 are therapeutic. The rest are for side effect treatment.  

Prednisone and Sirolimus cause lots and lots of side effects and so there is also
Tacrolimus Cream

Bactrim
Valacyclovier
Multiviatims without iron
Omeprozole
Vitamine D
Cetirizine
Levolthyroxine
Lisinopril
Lovaza
Magnesium
Melatonin
Warfrin
Mylanta
Tums
Zofran
Atavan
Hydroxyzine
Scop Patch
Oxycodone
Sunscreene
Cyclobenaprin

Boy the list is so much shorter now.  It used to be 4 pages. 

So Lulu is suffering strictly from side effects.  Her cancer is not doing all of this to her. Her side effects are what is causing all of this havoc.  The cure for cancer is not easy by any sense of the imagination....  Here is the newest on the poor child. 

Lulu had a blood clot in right arm. Went for ct scan to make sure no bleeding on brain..there was not..started blood thinner to get rid of clot.  Her arm is beyond huge ....her blood pressure was running high at midnight but came down at 2am ventilator is on 60...her lungs need to heal for us to come off this...I asked the doctor how long he thought she would be on ventilator and he said he didn't know. We have been in hospital over 3 weeks and day 9 on ventilator....staying strong and fighting another day from ICU...rubbing lulu's head with coconut oil..wiping her eyes. ..lotion on legs and arms..wipe her face ...caress her ear...smell her.....whisper secrets and dirty jokes in her ear...oh my sweet girl you are loved and prayed for by many but I am the lucky one who you call mom...#luvforlulu
The road is feeling like it will never end.

 
  


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