Week 2

Cheyenne was seen today by the oncologist who confirmed my suspicions that there was an infection brewing.  She has been placed on a stronger antibiotic for 1 week.  Hopefully this will make a difference to her bump.  She was also seen by the child life specialist who talked with her about the importance of taking your medication.  If anyone can get through to Cheyenne it would be Nancy.  Cheyenne loves her!!!
Wyatt and Brielle also had an appointment today at McMaster, so I took my Mom and she stayed with Cheyenne while I took the others to their appointment.
She received her chemo drug while I was gone with Wyatt and Brielle.  Thanks to Mom and Nancy for that.  I know it isn't an easy thing to endure.  While they were doing that they took off her steri-strips from her port incision(3+ weeks).  I have dubbed her the steri-strip queen because she refuses to let me take them off.
I am pleased to say that her appetite has returned, not as hearty as before, but is picking up.  We were told that todays chemo shouldn't have that effect on her.
I would please ask that while keeping Cheyenne and our family in your prayers that you also keep Micah in your prayers.  He had Stage 4 Rhabdomyosarcoma (the same as Cheyenne) and is going for his scan on Tuesday.  I have been blessed to be able to talk and question Belinda through the last few weeks.

June 27

Cheyenne's appointment has been moved up to tomorrow morning.  Her tumour (where the incision from her biopsy is) is fire red, hot to the touch and looks like it is ready to split at the seams.  I phoned yesterday, and was advised to put a pen line around to monitor its growth.  By lunch today it was well over the line so they are concerned it could be an infection. 

We are still working on the medications, some days are better than others.  Yesterday she took them fairly well without too much of a fight, today shes feeling better and  doesn't think she needs them anymore. 

Her appetite is slowly picking up.  Anyone who knows my children is aware of their awesome appetites.  It is so hard watching her pick at things she usually loves.  Day to day her taste changes.  She ate a bowl of oatmeal yesterday for breakfast, this morning she said it didn't taste right.  Today she enjoyed 3 fruit puree/yogurt freezies.

Thank-you for your continued prayers.

Medicine wars

We were discharged from the hospital saturday afternoon.  It was nice to be home and all of us together, something you take for granted.  Brielle was so happy to see Cheyenne.  Wyatt gave her a once over from head to toe too. 
Cheyenne was a trooper at the hospital.  Poor thing was constantly having to go to the washroom because they were pumping her full of IV fluids.  Because we had prepared her for loosing her hair, she kept asking me to see if was falling out yet.  However, she would not take her meds.  At home we have battled with her too.  Wyatt has been the best at getting them into her.  I figure I gave meds in the nursing home how hard could it be?  Let me tell you she has yet to be tricked.  It isnt as easy as putting them into her mouth, she gets herself so worked up, she makes herself sick.
She has an upset stomach, but she won't take the meds to help with that.  Her appetite is varied also.  Saturday for supper she had cucumbers and sweet peppers, sunday crackers and cheese and so far today it has been pretzels.  She thinks she wants something, takes one bite and it doesn't taste good to her.  So far she has been keeping up her hydration.
She goes back this friday for her outpatient chemo.  They will reassess her and we will go from there.
Please pray for me, that I will have the patience needed to get her meds into her, and for her to tolerate food.
Thanks for keeping us in your prayers

Treatment plan and chemo started

Yesterday (Thursday) we got the results back from her full body CT and they confirmed that she has only 1 tumour.  This means that she is in stage 1.  This is excellent news and an answer to many prayers.  Although this means that it is considered a low-risk, she will still be receiving 48 weeks of chemo.  These run in 3 week cycles.  She was hospitalized last night for hydration and will receive her chemo this morning.  She will spend a couple days in hospital.  Then she will visit the hospital once a week (for 2 weeks) to get her chemo injected directly into her port.  This is considered outpatient chemo.  At the end of week 12, they will rescan and reassess her to see if they will take a surgical route or if she will require radiation.

We came home after our appointment and waited for confirmation that they had a bed available.  We then headed back around 9pm to settle her down for the night.  We figured that if she was tired it might go a little easier.  Dave was staying with her but we brought her blanket, puppy dog and pillow anyways and set it up.  Cheyenne had different ideas and headed out of the room and down the hall yelling “I’m going home, I’m not staying here”.  The nurses assured us she wasn’t the first to try and escape.

By the time I had got there this morning, Cheyenne had found her groove.  First washroom trip and she was telling me how to arrange the hat in the toilet, and what to do it her IV started ringing.  She also disconnnected her IV to see how it worked.

Today she received 3 different chemo meds, one after the other.  By supper I could tell she was tired.   She has been sick (although it was after getting her oral med both times which makes me think that is the cause).

Thanks again to everyone for your support and prayers. 

Fasting for CT

Just a quick update for you all.  Cheyenne had a CT scan of her head and torso today.  She is sedated for these which means that she has to fast (lets just say agony for all those involved). 
Today was the first time they accessed the port and administered her sedation through it.  It took 2 of us to hold and distract her and the nurse to place it.  They assured me that she did great for her first time, lets pray it gets better from her on because that is heartbreaking.
CT was running late so she wasn't scanned until 2pm.  By this point she was crying and begging anyone who would look at her to please feed me.
Cheyenne doesn't seem to have the usual doppiness after sedation.  She is sky-high and uncontrollable.  This is her 4th sedation in 5 weeks.  She is getting to be a pro at this, I am not.
We go back Thursday at 11am for our CT results and to (hopefully) get our treatment plan.  She will have bloodwork and then we will be admitted Thursday night for IV hydration and chemo on Friday.
Thank you for your continued prayer and support.

Rhabdomyosarcoma

Today we got Cheyenne's final pathology report.  She has a rare form of cancer called rhabdomyosarcoma.  There are 2 different kinds, Cheyenne has the 'better' of the 2(embryonic).  Cheyennes tumour is also in a 'favourable' location and CT shows that it is encapsulated.  She needs a full body CT scan this coming tuesday to confirm there are no other tumours; however, from all other tests completed they feel confident that this is the only site.  Once this is confirmed, they will tell us what stage she is in.  The staging is important to choosing a course of treatment.  The doctors feel it is a low-risk stage.  We were expecting to get more of a concrete treatment plan. 

Here is what we do know about the coming week.
Tuesday-she goes for a sedated full-body CT scan.
Thursday morning- we have to go to the day clinic for blood work and to get the results from the CT scan.  These results will determine her path of treatment.
Thursday evening- Cheyenne will be admitted into the hospital for IV hydration.   This is to prepare her for chemo and to flush her kidney(the kidneys help to excrete the chemo).
Friday-Cheyenne will receive her first chemo treatment.  She will be kept for a couple days to monitor and see how she responds.
As of right now we don't know which meds she will be on.  That will be determined by the stage of her cancer.
We will  get our treatment schedule/calendar at that point also. 
Thank you for your prayers today.
Please continue to pray that her CT scan will be clear and that we can get started her chemo soon.
Please pray for our other kids, as they are bearing burdens in their own ways at this time.

Happy Birthday

June 15, 2008 was a special day in our family.  After a very stressful, high risk pregnancy, she finally was born.  It was a sunday morning, Father's day to be exact.  Cheyenne is a blessing, a gift from God.  Today is her 4th birthday, but instead of picking out her birthday outfit for a party, I am picking out an outfit to go to the doctors.  We have a meeting this morning at 11am to find out her final diagnosis.  This diagnosis determines the path in with her treatment plan takes.  This tells us just how much the dreadful disease has ravished her poor little body.

As I look back to four years ago I remember being told that I there was a chance I would loose my baby, or at best have premature labour.  I remember having to get the steroid shot to develope her lungs because of the bleeding I had around 24 weeks.  I remember all those who were praying for her before they ever knew her.  Lord, you have given me the greatest gift for 4 years.  As we go today, may I be reminded of the hundreds are people that are praying for our little girl, a child some have never met.  May we be strengthened by the prayer meeting that took place last night, and over the past weeks, of the friends and strangers that drove many miles to come and share our burden.  And ultimately, help me to remember that she is yours Lord, and that thy will be done.

Please pray for strength and understanding for us today, for wisdom with the doctors over the many months that are ahead, and for courage for my little girl.
I will post her treatment plan as soon as I am able to.

It all started...

I am just starting this blog to help keep everyone updated about Cheyenne.

Cheyenne is our 2nd child, a couple days shy of her 4th birthday.  She has a unique personality that draws everyone in with her charming smile and her infectious laughter.

Around the middle of March, it was noticed that Cheyenne had a small lump on her right cheek bone just in front of her ear.  We took her to the Dr who put her on a course of antibiotics and suggested it could be an enlarged lymph gland.  After about 2 weeks, it kept growing so we were seen by a paediatrician who did x-ray, ultrasound and bloodwork.  He assured us her bloodwork looked great, but was puzzled so he referred us to McMaster.

Once at McMaster she has had numerous tests, seen oodles of doctors, and finally got a CT booked.  Two weeks later she had a biopsy.  After the biopsy we were told it was no longer what they had hoped to find.  They were sure that this was fast growing, irregular cell growth that she had.  1 week later and they confirmed that it was a malignant tumour.  

Yesterday she went and had her portacath put in.  This is a small port placed under the skin in her chest, that goes directly to her heart.  All her medications will be delivered through this port.  She also had a bone marrow biopsy done at the same time.  They are checking to see if she has cancer elsewhere in her body.  We are hoping to hear back today with an appointment in the next couple days to get her final diagnosis and treatment plan.

Thank you to all who have been praying and helping us as we start this journey.  This is Cheyenne's journey, but there are many who are taking this journey with us.  

There is power in prayer.