She is smiling!!!

Wednesday just done the surgery, in PCCU

The last couple days have been hard.  Hard because you see your child laying in a bed knowing that you consented for the doctors to perform the surgery on them.  In my head I know the medical reasons and all the risks, but to actually see them laying there, you can't be prepared for.

Thursday Morning



Getting ready to transfer.  Notice how BIG these rooms are.  They were just recently moved and updated.



Thursday afternoon-swelling starting

backview

right side- She will still require another surgery down the road for the cosmetics part-the repositioning of the ear and to fill the hole left from the removal of the tumour

Moved back to familiar ground

And for those who ask how we do it taking cassidy along.....here is her living quarters!

The swelling that she has is starting to get better, but it does get worse before it can get better.

Poor thing, her eye was completely swelled shut yesterday morning

This morning Cheyenne is smiling, talking and giving orders.  For those who know her, this is her normal.  Her pain is under control mostly with tylenol.  She has no complaints about her head, but the skin graft on her buttock is uncomfortable to her.  She is unaware of the meaning of the pain.  In her mind she has determined that the catheter had a needle on it and left her a sore.  I am not going to correct her yet.  I'll tell her the truth when the pain is in her distant memory. 

On the day of Cheyenne's surgery, her school had the Terry Fox run and the Pogo Raise awareness for Childhood Cancer.  Mrs Munro (Cheyenne's teacher) sent me a few pictures.  It brought tears to my eyes.  All the little kids with their stickers saying "I am running for Cheyenne".  I am only including a couple pictures of the sidewalk, I think you understand why.

Thank you so much to everyone for your thoughts, prayers and kind words of support and encouragement.
love David and Sonya

Out of PCCU

This morning Cheyenne was moved from Pediatric Critical Care Unit to the oncolgy ward.  The move was surprising to us because we had been told she would be be in PCCU for a couple days, but there is a certain calmness and relief being back on familiar turf.  We are known by the staff while walking through the halls, and Cheyenne loves her nurses.  Cheyenne is quite swollen, and it will get progressively worse over the next few days .  This evening she was awake for an extended period of time, up to that she was drifting in and out.  We were told that this had something to do with her being under anaesthetic for over 9 hours.
Cheyenne isn't really talking right now.  It makes for a long day not having her to talk to.  Thank you for praying for us over the past few days.  It has been exhausting, and I am tired, so good-night.

surgery is complete-6pm

Cheyenne is out of surgery and moved up to ICU as of 7 this evening.  It has been a long, exhausting day.  The doctors are pleased with the outcome.  All tumour was removed and the rotation and graft was completed.  I'm not going to lie, she is a very sore looking girl and I took a second glance because I didn't recognize her.  She has some swelling and they have warned us that it will get worse in the next week.  She will be in ICU for the next couple days and in hospital for at least a week.  Her wounds are covered to keep her from picking at them.  They will sedate her to change the dressings and check the graft in 1 week.  They have an iv into the artery at her wrist, and she is hooked up to numerous monitors.  She is extremely groggy still (that in part is due to being under anaesthetic for 9 hours). 

Midway through surgery-1pm

First of all we would like to say thank you to everyone who has kept us in their thoughts and prayers today.
Cheyenne was taken in to surgery around 9 this am.  She was not impressed with me, she kept asking me to take her home.  Last week she told me she would "keep 'bumpy', he is getting small and I really don't want the dr to cut me with a sharp knife".  In all fairness it was slightly overwhelming walking into a OR room with over 10 people staring at you.  The surgery today is being done in two parts.  The tumor was successfully removed with 'mimimal' nerve damage to her face(they won't know for sure until after surgery).  The doctors then waited until the got back a frozen section pathology report from the margin tissues.  They came to let us know that the preliminary results said cancer was not in surrounding tissue(final results will take approx a week).  They are going ahead with a scalp rotation and skin graft; however, they are not going to be filling the empty cavity with flesh as previously thought.  Because they had to remove tissue right to the bone, there would be no blood supply for the tissue to connect to and be nourished by.  Cheyenne will have a depression/hollow at this sight.  When her chemo (and possibly radiation) is complete she will then have further plastics work done.  I will update gain this evening and let you alll know how the remainder of the surgery has went. 
Thanks again, Sonya, David and Cheyenne

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

MRI and CT done

Cheyenne had her MRI completed last week and her CT today.  We will not know the results until next monday.  We are supposed to have a consult with the surgeons then (we had a little meeting today). 
I will blog a more complete update in a couple days.  For those of you who know our family, my Grandad passed away last friday and the funeral is tomorrow.