Wednesday, September 19, 2012

OR is booked!

I realize I have taken awile to write this, and things could still change in the next week. 
Cheyenne is booked for surgery for September 26th at 9am.  Over the past week we have met with 4 surgeons, and some again tomorrow.  As of now, this surgery is just the removal of the tumour.  The ENT-Dr McLean will be leading the surgery.  His job is to locate the facial nerve (which is about the thickness of 2 hairs) and to NOT damage it during the removal of the tumour.  To do this they have to open up by her neck, locate the nerve and then have electrodes to monitor all her facial nerves.  If the tumour is around her nerves, they will have to remove a portion of her nerve.  The risk is that she will not be able to squint, thus not being able to protect her eye.  The other damage would be to her forehead, and not being able to wrinkle her eyebrows/forhead.  He assured me that this is minimal, think of it as free botox. 
We also have Dr Cameron, our paediatric surgeon helping with the removal.  Another paed surgeon also consulted for a second opinion but he is unable to be there for surgery. 
When they remove the tumour they also must take a percentage of good tissue surrounding the tissue.  This is everything that the tumour touches.  And i'm sorry I can't give more definates, but they wont know for sure until they are in surgery.
The entire temporalis muscle will be removed.  This is the cosy location her tumour started in.  The bone may need to be shaved or removed.  And all surrounding tissue will be removed.  The "margins" (healthy tissue that surrounds tumour that will also be removed) then have to be tested for any cancer cells.  If the tests come back negative, that would mean they got it all.  If they come back positive, it would mean it has spread, and radiation treatment would be for sure.    These results will take about a week and will help Dr Choi, the plastic surgeon, determine what his course of action will be.  IF they remove alot of the bone, they will graft in one of her ribs.  The muscle and nerve(if needed) will be harvested from her arms and legs and transplanted to her face.  To fill the 'hole' from her tumour, they will take a skin flap from her buttock and transplant to her face.  They will then cover it with skin from behind her ear (so that the skin matches).  They also have to cover the hole they left in her buttock with a skin graft from her thigh.  And they will do a scalp rotation to stretch over the place behind her ear.  THIS IS JUST A ROUGH OUTLINE, and will probably change once she has had her removal and they know more of what they are dealing with.  The reconstructive surgery will hopefully take place within 2 weeks of the removal. 
We haven't even told Cheyenne that her surgery is booked.  How do you even form into words and explain to a 4 year old that not only are we removing the 'bumpy' they are going to fix it so your face isn't disfigured.  But in the process you will be in alot of pain because they cutting and pasting the rest of your body back together.  I know that as a mother, those scars will all be beautiful and tell her story of how she is so brave and what she has been through.  The hard part is being vulnerable and letting her inner beauty radiate through, not protecting her from the gawking eyes, the whispering adults(because yes, adults are less accepting than children) and letting her have back her innocent carefree childhood.
So.....I won't be telling her because I don't know how.  Instead, her dear friend Nancy(the child life specialist) will be explaining it by demonstrating on a doll, and I'm pretty sure that I will take a walk down the hall because I can't bear listen or watch.

Please pray
  • Cheyenne will be told tomorrow(thursday), please pray for acceptance and understanding for her, and strength for me.
  • for her surgery on next Wednesday.  The removal alone is very complex, and will take approximately 5 hours. 
  • that the cancer is not in the bone
  • that Cheyenne will have good pain control

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