Upcoming appointment

I'm not really sure how to write this, so bear with me it may be a bit scattered. 
Cheyenne has received 10 weeks of chemo, and just started her 4th round(3weeks to a round).  This particular round she was to have no Vincristine(weekly).  Her scans are booked to reassess.  We have been looking forward to this, we will know how the Chemo is working on the inside, even though the results are amazing to the naked eye.  Her upcoming tests are as follows

•  Sedated MRI on September 5 @ 9 am
• Sedated CT scan on September 11 @ 2 pm (this time is especially difficult keeping a child on an empty stomach)

Then we got a call on Monday to tell us that they have went ahead and booked her for removal of the tumour, surgery is booked for September 26.  Now her chemo has to be reassessed because they don't want her waiting until after that date (would be too long to go without treatment).  We are currently waiting for the doctors to have a meeting to discuss the circumstances and give us a revised treatment plan for the following month.  The issue is that they need her bloodwork to be in an appropriate range for surgery.  They want her to have the ability to clot, fight infection and heal.  We will meet with the General Surgeon and the Plastic Surgeon on September 19 for the consult and pre-op.

For right now I can't explain how I feel about getting the tumour removed.  When this all started I wanted them to cut it out instantly, now I am more concerned with is she ready for this. 

Here are some pictures with dates so you can see her bump grow and shrink



April 13, 2012



June 5th- the dirty face is a Cheyenne classic!





June 12th-Surgery to put in port-a-cath and bone marrow aspiration



June 27th



July 3rd-hospitalized for bowel issues




okay I realize this one is gruesome, but this is what it looked like at its biggest when it burst open and hence why it was bandaged until recently - July 17th









July 30th-so proud holding baby Brantley



July 31st












August 27th

 



Today-August 30th-look at the difference in 3days



Week 10

We are home, after the start of our fourth round of chemo.  Ten weeks in, the time has went fast.  First I would like to thank all those who help in many different ways.  We appreciate your friendship.  Today I met a new family who just got told their daughter has cancer.  She is 22 months old.  I was introduced by another set of parents, Marty and Emily.  I think they are the official welcoming team(just joking).  This young couple were so helpful to us when Chey was first diagnosed.  Marty was a real help to David and took him on a tour, showed him the Ronald McDonald Room(coffee and snacks) and took him to get a parking pass(or as we call it-our time share).  Their little guy, Griffin has the same type of cancer as Chey, and they love to play nurse together with their beloved Nancy(child life specialist) in clinic.


This is a picture from before she started chemo-with Nancy and Griffin



Here is the link to an article on the Gazing Balls that his Grandma Jane makes.  Grandma Jane comes to clinic every week and all the kids love her.  Shes always trying to make them laugh.

Chey did quite well this week.  She was admitted thursday night and had her big chemo doses yesterday.  She is starting to feel more at home when in the hopsital.  Yesterday she had one of her favorite nurses, and she even let the nurses put the meds in her NG tube(huge milestone for us).  Her neutrophils(immunity) weren't as high as normal on Thursday, which means she will probably be neutropenic faster this time.  Today haemoglobin was low so we have to back Tuesday for more bloodwork, as well as Friday for her regular clinic visit.  On the bright side, she doesn't have any of the vincristine(small chemo) this round, so it should give her a couple weeks to have a break.  In the coming weeks she has an MRI and CT scan(both sedated).  Please pray that she will have comfort for these tests.  She gets very anxious about 'sleepy' medicine.



Week 9

Cheyenne had her week 9 treatment yesterday.  it is getting a little easier with each appointment.  She still does not like finger poke, but it is necessary and so there is no alternative.  Her counts are slowly creeping up; however, she is still neutropenic.  Again this week she helped the nurse to access her port and push through her meds.  Cheyenne is really seeing the benefit of the chemo now as we can visually see size differences in her bump from week to week.
She is still getting her feeds throughout the nights.  We seem to have gotten a few faulty feed bags in our last set of supplies and what a mess! 
Cheyenne is still eating, but is does fluctuate up and down.
She is due in clinic again on Thursday for blood count and if all is well then we will proceed with her Round 4.

Week 8

There has been such a change with Cheyenne over the past week.  A change for good.  After she got home from the hospital, her energy has continued to pick up, and her appetite has increased.  She is still hooked up to NG feeds during the night, and then gets up and grazes all day.  She didn't have very many taste aversions this round.  Her new favorite food is cheezwhiz sandwiches (that she makes her self).  We were able to go to the beach for a couple hours on monday.  The kids had a blast! 



Cheyenne and Grandma



 The kids have also spent alot more time outdoors this week.  The cooler weather has made such a difference.



On the trampoline





Hitching a ride



Resting on the grass with Daddy

 Today Cheyenne went in for her outpatient chemo and fingerpoke.  She is neutropenic, so we will be sticking around home for awhile.  We were nice and early so we were seen pretty quickly and out by 10.

Thank you also for your prayers for my brother-in-law, Roy.  He had a 5 way bypass heart surgery on tuesday.  He is recovering well.

We are home

Hello all,  Cheyenne was discharged this afternoon.  She was admitted thursday night and she settled in.  She seemed to really have alot of energy and so we spent quite a bit of time doing crafts and playing.  Usually she curls up in her quilt and watchs TV.  Up until yesterday evening she didn't have any complaints and then around bedtime she complained of nausea.  But she was so good about it, actually I find it rather humorous because she has figured out how to breathe through it and if you had your back turned to her you would think you were on the labour and delivery.  This morning she woke up sick and up came the NG tube.  She tried to convince David that she didn't need it put back in, and she would eat and drink and even take her medicine in her mouth if we didn't put it back in.  When that angle didn't work, she informed the nurse that if she was getting it put in then she wanted that nurse to do it. 
Last night though the night she spiked a fever, and her heart started racing so they hooked her up to the monitors.  By this morning her heart rate was normal and temperature was good, so they said that she could come home.

Tonight Cheyenne was still quite perky and requested to go see Uncle Roy.  Roy is awaiting quadruple bypass surgery in the coming week.  She climbed up on the bed and was inspecting his 'sticky' heart monitors and all the leads.  Over the past week she has been giving him advice.

• Don't worry Uncle Roy, the nurses are nice, you just have to do what they tell you and take your medicine too.
• Mom, we better buy him a balloon(she gets one when she does overnight stays) it would make him feel better and help him be happy.

Please keep Roy, Sarah and family(7y,5y,2y,1week) in your prayers. 

On to Cycle 3

This morning Cheyenne had her bloodwork done and her physical assessment also.  Her body has done a great job of rebounding and her bloodwork was awesome.  She was admitted tonight and will be receiving her chemo tomorrow. 
Today on the way to Cheyenne's appointment we were listening to her Steve Green CD.  One of the songs is based on Psalm 139 verse 13&14.

For you created my inmost being;
    you knit me together in my mother’s womb.
 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.

This song really made me stop and think about how intricate our bodies are and how if one thing is out of sync it effects so many other things.  This is so noticable as she gets her chemo treatments and her bloodwork changes accordingly.  It can sometimes be mind boggling thinking about how many things they are monitoring for (heart, kidney, liver, etc) and yet we all take it for granted and go on oblivious to the precise detail of our body .  To know that God has created us as such intricate beings makes me feel so small, so helpless, and yet so loved.   To know that he hears my pleas, can be so humbling.

We are very thankful for all the family, friends and neighbours who have been so helpful and caring in so many different ways.  Thank you for continually bringing our little girl before the Great Physician in prayer.