Thursday, December 13, 2012

A small rest

Cheyenne had her last of twenty electron radiation treatments on Monday.  She was so excited to have her pajama party, and her purple cupcakes.  The girls treated her like royalty, and she loved every minute of it. 
Marcy and Cheyenne - Vanessa is missing, but these are the ladies in the booking office that let Cheyenne feed the fish and write on their whiteboard.

Cheyenne's radiation techs (L-R)
Kash, ?Elham, Cheyenne, Dinitra and Janessa in their jammies.

Jammies and jewelry, notice Cheyenne convinced them to trade gold for plastic
Now that radiation is done her appointments are only twice weekly for the next little bit.  She has numerous follow-up appointments with specialists lined up as well as her regular clinic appointments.  Cheyenne will visit the ENT next week to assess her inner ear.  Radiation can have a damaging effect on her ear so she will be monitored closely.  This is also the same doctor who headed her removal surgery so he monitors her facial nerves also.  Next week she will see the Plastic surgeon as well, again to monitor from the radiation.  His concern is the skin and the reconstruction site, healing is effected.  We also received word this week that she goes of December 24th for her post radiation MRI.  This will be done under sedation.  Not because Cheyenne couldn't lie still but because the MRI machine is very noisy and loud noises bother Cheyenne (her own doesn't count).  They are looking for any existing cancer.  Please pray for us as we wait for the results.  Because this is happening over the holidays I am assuming it will be at least 2 weeks before we get results.

I have enjoyed the last few morning to get up and not have to rush out.  The kids have loved it too.  I will be open and honest and tell you that the last 6 months have taken its toll on the kids in different ways.  The last 4 weeks have exacerbated that effect.  I would just ask that people be aware of their actions towards Cheyenne for a couple of the following reasons.
Wyatt gets upset and feels displaced very quickly.  He sees all the fun things Cheyenne gets and that blinds him from seeing the pain that she endures.  I realize that this is a heart issue for him and I do not want him to resent her and be bitter because of Cheyenne's illness.  Giving Wyatt things is not the answer either.  It is such a hard balance.  I tried taking him with me a couple weeks back to rads and clinic so that he could understand what Chey has to go through.  He saw her get her head screwed into the mask, get a fingerpoke and her port accessed.  His assessment of the day...she gets alot of food.  For those who don't know Wyatt, he refers to his stomach as his food hump(just like a camel, haha). 
Cheyenne has come to think in the past few weeks that she is the boss of her siblings.  We struggle with her behaviour after she has been constantly surrounded by adults.  She thinks she is an adult and she has authority to 'rule' over the other kids.  She also thinks that she is entitled to have as she wants.  She has gotten really good at munipulating lately, divide and conquer.  I would ask that when around Cheyenne that you PLEASE respect our authority.  This means if we say NO, obedience is not an option.  People may think it is harmless to give in to her over 'a candy', but for her small victories just encourage the negative behaviour.
Brielle is attempting to mimic Cheyenne's behaviour (except her little 2 yr old brain isn't quite as good at it).  Brielle has also taken to her own form of self-defence, her water bottle up the side of her siblings' head.  Have to say she probably comes by that honestly, I fought dirty when  I was little ;)
Cassidy is my mellow baby, but she is strong willed.  We have tried multiple formulas and different bottles and she is just starting to take a bottle at lunch.  I think she knew that if she took the alternative then she would get the alternative.  At 11 months she is taking 4oz of goat milk with her lunch.  I say that proudly, it is an accomplishment.

Over the next weeks could you please keep all of my children in your prayers.  It is especially my burden at this time.  We appreciate so much that you are praying for our family and helping to share our burderns on so many levels.  To those who have lovingly prepared meals for us, and those who have opened their homes and babysat our children and the financial sacrifice people have made.  It has not gone unnoticed, and it is so humbling to see how God is bringing us through this trial yet supplying all our needs. 

Cheyenne is slotted to be admitted thursday night for chemo Friday.  This will depend on bed availability and of course her blood count.  I will let you know.

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