December 29,2012

Just a quick note to say that we are all well, so far have avoided the cold and flu circulating.  Buzz at the clinc is that measles and chicken pox are circulating.  Our fear, so if you know anyone in our direct vicinity with this PLEASE let me know ASAP.  Cheyenne's counts yesterday was good(platelets and such) but her immune system is pretty low.  Please NO physical contact with her (NO hugs and kisses).  This applies to everyone!
We were so fortunate being able to celebrate Christmas at home, others were not as fortunate.  There are some who may be celebrating their last Christmas with their families and others who had to spend it in the hospital fighting for their life.  Cheyenne's friend Crystal is poorly and has just spent 5 days in PICU.  Please pray for her recovery.

This was taken during our last hospital stay together

 
Cheyenne is scheduled to be at clinic next thursday for labwork and be admitted thursday night for Chemo on friday. 
The kids are outside playing in the snow.  I will try and post some pictures later. 

Scan Results.

Just a quick note to let you all know that we got Cheyenne's scan results back.  Everything looks great and there is no evidence of disease present.  This was the best gift we could have asked for.  Thank you for keeping us in your prayers.  We are looking forward to the holdays coming up.  Lots of family get togethers, but especially enjoying time with just our little family.  We hope you all enjoy the holidays and cherish the time spent with your families.
 Glory to God in the highest, and on Earth peace, goodwill toward men. Luke 2:14
Merry Christmas, love the DeGraafs

CT and MRI done

I will pick up where I left off last week.  Cheyenne was seen in the clinic Thursday morning for fingerpoke and to have her physical.  Her bloodwork was great and the doctor was amazed that Cheyenne is this far into her chemo and has not had blood products or a transfusion.  She has also not needed the growth stimulant to help boost her counts.  These are both huge things in the world of oncology.  She bounces back and is in great spirits.  For this we are truly thankful. 
   Thursday night we were admitted to the ward for hydration, and chemo on Friday.  We got paired with Cheyenne's friend Crystal and we had a great time.  My girls loved it and Cheyenne spent more time in Crystal's bed than her own.  But, they kept each other occupied and it was so relaxing to be with someone you know.  We did get the nickname of being the party room, but thats okay ;) 

Cassidy

She was trying hard to get Crystals IV line

Who knew that bedrails would contain a baby?

best buds

We also were right next door to little Charlotte.  Cheyenne was able to have a visit with 'Grandma Teresa', Chey loves seeing her.  This time of year is busy at the Hospital.  On Friday the Mayor of Hamilton came in to visit and gave the kids books. 
Our Doctor was so kind and wrote our discharge orders Friday so that we could leave after her morning meds on Saturday.  Usually we have to wait for the doctor to do their rounds and it takes forever to get out.  This was so nice, we will definately have to go that route again. 
As we are becoming very aware, nothing is ever written in stone.  Never make plans you aren't ready to change.  Friday afternoon we found out that instead of a MRI on December 24th, they would do and MRI and CT scan on Monday the 17th.  We left Cheyenne accessed(IV in port) when we were discharged Saturday.  When we arrived Monday morning Cheyenne was already worried about her 'sleepy medicine'.  Rico(our sedation nurse) asked if we thought Cheyenne could do the CT without sedation.  This mommy was so proud!  Cheyenne had no problem laying down and staying still for the CT.  This is HUGE, it means that a test that normally takes us 5 hours plus painful fasting, can now be done in 30 minutes.  The MRI is a different story.  That machine is LOUD!  To do it without sedation isn't even an option at the moment.  Just to scan her head takes about an hour, and Cheyenne complains that loud noises hurt her ears. 
Tuesday afternoon Cheyenne had to see the ENT Dr McLean.  He was impressed with her healing thus far, and has said that she can now be seen every 3 months.  Wyatt had to see the same ENT on Tuesday.  I think he got a taste of the painful things she has to endure.  He hasn't complained since.  They attempted to put a scope up his nose (it was smaller than Cheyenne's NG tube).  They needed to see his adnoids.  He had instant reflex and hit the resident doctor.  I didn't even have a chance to reprimand him, Cheyenne (aka mother hen) jumped right in explaining that its okay to scream when something hurts but you must NEVER hit the dr/nurses, they are here to help you.  I had to hide my face because as serious as the situation was, I was bursting with laughter. 
Cheyenne has her clinic appointment and vincristine chemo on friday morning.  She is also sceduled to see the plastic surgeon for her post radiation check-up.  It will be a busy morning but then we are off until the following friday. 
I will post if we get any results on friday.  Thanks for praying for our family. 

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.
Thanks

Almost done Radiation

Today Cheyenne had her 19th radiation treatment.  Monday will be her final radiation, or as she calls it 'picture therapy'.  As glad as I am that she will be done her rads, there is a certain sense of reluctance to walk away.  Cheyenne has become very close with many people over the past 4 weeks.  She has her own little fan club, as we walk through the halls.  She starts out by saying hello to the Canadian Cancer Society volunteers, then down the elevators (chatting to whoever is her passenger), then she signs in at the reception desk, next she is off to the booking office to get the fish food and nourish her little friends.  Until it is her time to go in for radiation she wanders around and does her office work.  This means stapling, taping and drawing on any piece of paper that isn't spoken for.  She always has the same 4 rad techs, but she calls them her friends.  These gals give her piggy back rides down the halls, take her through secret passageways, even dance with her.  For Cheyenne this is what her treatment is about.  When we are done her treatment we head back upstairs where she stops at the main reception for her cherry candycane.  They have also stocked her up on her winter hat collection and a couple scarfs too(specially made to match her coat). 



This is for you Mrs Munro.





Just done her radiation




Here is the PRO!




Dinitra and Cheyenne



After her treatment on Monday they are going to have a little party.  Cheyenne volunteered me to make the cupcakes and instructed them all they were to wear pajamas too.  This should be interesting!

Once we were done radiation today, we headed to McMaster for bloodwork, and chemo in clinic.  Cheyenne had a panic attack when she noticed there was a new nurse, but after they talked for a few minutes and Cheyenne inspected her cool Tinkerbell scrubs all was well and she willingly exposed her port to be accessed.  No tears for chemo.  Cheyenne needed to inspect the newly renovated Ronald McDonald Family Room, and we took a walk over to the ward to see the nurses.  We also visited sweet little Charlotte and her Mommy.
Thanks again to everyone for all your support, help and prayers.  We appreciate your love and kindness.