Day 11.. in the trenches

Things have not been easy for our little miss Cami the last few days, but she has been such a trooper!  As her mother, it just kills me to see her in such pain and so sick.  I can't imagine knowing that you are going to feel absolutely terrible for up to 4 weeks straight!  It is a living nightmare!  BUT.. each day that we cross off the calendar, we are getting a little bit closer to some relief for her.  The days are long and go by very slowly.  Cami doesn't feel up to playing or doing crafts like she has in the past.  We basically watch movies and pause them so she can throw up, or suction her saliva, or clean up her bloody nose, or get one of her medications hooked up, etc.

Speaking of medications, the sheer amount of medication given after a bone marrow transplant is UNBELIEVABLE!  Everything is given through Cami's central line with the exception of her mouth care and a few other medications that cannot be given through IV.  This means she has 6-8 IV boxes on her IV pole at once and an average of 6 tubes coming out of her constantly.  All the meds are carefully timed and scheduled as some are not compatible with others and each med is given at a different time of day.  When a med is finished, an alarm sounds and we let the nurse know that it needs to be switched out.  As you can imagine, with this many meds, Cami's alarms are almost constantly going off.. day and NIGHT! We are so sick of those darn alarms.. we could scream!  

As you can see, Cami is constantly hooked up to tubes and wires.
They get tangled and bug her ALL THE TIME!  

Just look at all those boxes on her IV pole!  

This thing is fully-loaded and they are constantly running different meds.. day and night!

Here is a list of all the meds Cami is on as of today.  

They cange almost daily, but here's today's list just to give you an idea:

Levaqin -IV (broad spectrum antibiotic as a precaution)

Diflucan -IV (antifungal as a precaution)

Actigall -oral (to protect the liver)

Cyclosporine -IV (anti-rejection med)

ZoviRAX -IV (anti-viral)

Nubain -IV (for itching)

Dilaudid -PCA (pain medication)

Apresoline -IV (hypertension)

Ativan -IV (used for nausea)

Benadryl -IV (used for nausea)

Zofran -IV (nausea)

Protonix -IV (for heartburn and acid in the tummy)

Electrolytes -IV

Tylenol- IV (for fever)

TPN- IV (feeding)

Lipids- IV (feeding)

Heparin -IV (to keep line from clotting)

Saline -IV (to flush line)

Imodium - oral (to control bowels)

Calmoseptine (cream for rash)

Melatonin- oral capsule (to help sleep)

Biotene (mouth care)

Nystatin (mouth care)

Even those little toes are constantly wrapped up in wires.

Look at those lips!  If you could see the inside, it is even worse!  

Poor girl is just covered in sores.

 I hate that my posts are so negative lately, but I promised to keep this blog real, and this is our reality right now.  We are in the trenches and Cami is battling her way through it like the little warrior she is!  Here are a few things that have made her extra happy the last couple days:

She received an autographed photo from the cast of Jessie (her FAVORITE Disney show).

This is her latest prized possession-

And she got this very special letter from a fellow cancer fighter.  Jake also had ALL, relapsed then went on to receive a bone marrow transplant.  He is doing extraordinarily well and just celebrated his one year bone marrow birthday!  We love you Jake!  

Thanks for the darling letter and for cheering Cami up!