1 year post chemo

I know this post is a few weeks late, but here it is.
Cheyenne had her 1 year post chemo scans in July.  She was able to do the MRI(about 40 minutes) without sedation.  This girl amazes me!  Her determination surpasses that of an average adult.  Its probably that same determination that frazzles and exasperates me too ;)  We received her results last week and the Doctors are happy with her scans and with her progress.  1 year cancer free.
Cheyenne is proudly sporting a new pair of purple glasses.  It has took some determination and a few apparatices later but I think we finally have them staying on her face straight.  (Cheyenne's surgery to remove the tumour left her ear displaced making this a trying job)  Cheyenne is looking forward to September and going into grade 1.

9 month scan results

On monday Cheyenne had her follow up appointment for her scan results.  These were her 9 month post chemo scans.  Cheyenne did great at her scans the other week.   The sedation nurse even suggested that we try her unsedated for the MRI next scan.  They have special goggles that she could wear and watch a movie during the MRI.
Her scan results were clear.  There is spot where the radiation has caused damage in the form of bone thinning.  The doctors will continue to watch this area.
Yesterday we received a call from the hospital to book her port removal surgery.  We were able to get a cancellation for next tuesday at 12:30.  This should be a simple procedure, and if all goes well we will be able to go home afterwards.
Thanks to all who have kept us in your prayers.
We were able to see a few friends when we went to clinic Monday and are happy to pass on that Crystal is 1 year cancer free.

Our new addition and prayer request

We are proud to announce our new little blessing.   Gracelynn Alexis was born April 2nd shortly after noon.  She is a very content baby, and her siblings are enamoured by her.

Cheyenne had her CT and MRI the beginning of the month. .  These are her 9 month post chemo scans.  We head down tomorrow for results.  Please keep us in your prayers.  

A quick update-March 24

I just thought I should post an update seeing as it has been awhile.  Cheyenne is scheduled next week wednesday and friday for her 9 month post chemo Ct (chest), and MRI (head).  She will also have her routine bloodwork done at the same time.  Once we receive her results back they will reschedule her port removal.  We have had a couple chances to take a cancellation but both times Cheyenne had plans and I really felt that she has had to miss things for appointments and this wasn't on my list of priorities.
Cheyenne also has a follow-up booked with the orthopedic surgeon this thursday.   This is to watch the side effects from her neuropathy that the chemo caused.  We do notice that she still walks on tip toes, but they are more concerned at this time of her knock knees.
Cheyenne also went to visit the opthamologist over the March break.  They are going to continue to monitor her every 3 months.  Her one eye still wanders at time, however they would rather wait to see if it will correct itself over time.
I will try to post an update once we get her results.  I anticipate those the 2nd week of April.

port removal cancelled

We received a call friday to say that Cheyenne's port removal surgery for this coming Wednesday had been cancelled. The operating room was needed for an urgent case.  We have been placed on a cancellation list and will hopefully be done within the next 90 days.  Will keep you posted.

February update

I am having issues with this blog.  It has taken me 4 attempts to get  logged in.  If it works on the PC, then it wont work on the tablet and vice versa.
Last month Cheyenne had her 6 month post chemo tests.  This included bloodwork, a chest CT and an MRI of her head.  We spent last monday in clinic getting our results.  The oncologist was very pleased with Cheyennes progress over the past 3 months.  There previously was an area of concern on her MRI that was thought to be post operative scar tissue or damage from the radiation. This has resolved itself.  However another area was detected and at my insistance the doctor personally went down and had a meeting with the  radiologist and another specialist and determined it was not a recurrance but is thought to be a distorted blood vessel.  This could be caused from radiation damage, but is most likely from Wyatt and Cheynne smacking heads the week before her MRI.  We will have to wait until her next scans in April to know for sure, but I have peace about it for now.
Cheyenne is headed to McMaster today for her pre-op to have the port removed next Wednesday.   Please keep her in your prayers.  Although it seems to be a fairly easy procedure,  it still is a surgery.  And for Cheyenne, there seems to be an emotional attachment to her chemo accessories.
The last couple weeks have had a lot of ups and downs emotionally.   We get so attached to our friends at the hospital, they become a part of our families.
I'll start with the positive news, Collin finished his last inpatient antibody therapy treatment in hospital.
Jamshid, who is the same age as Cheyenne, was found to have a tumour in his brain at his post chemo scan.  He underwent surgery to have it removed Monday and will proceed with radiation once he is healed.
For an update on Browyn, go here.
Today is the funeral of Austin, a fellow patient from McMaster who passed away last week.
Last week Josiah, was diagnosed with leukaemia.   In April 2012, David went to Mexico to help the Dyck family with building the new hall.  They have been missionaries in Mexico for the past 9 years.  They were up visiting family in Ontario when they got Josiah's diagnosis. They no longer have OHIP coverage, and are Josiah is loking at 2-3 years of treatment.  He is currently being treated in London.  I believe they are setting up a trust fund to help with his healthcare costs.
Please keep all of our friends in your prayers.  And please keep Cheyenne in your prayers as she has her port removed next wednesday.

Childrens Wish - Part 5 and update

I realize that it has been a long time since I have updated the blog.  We have been busy lately and it slips my mind...frequently.  This past Friday Cheyenne had a port flush at Mac.  We didn't see the oncologist.  That appointment is February 3rd after her MRI(January 20th) and CT(January 6th).  She will have a physical, bloodwork and we will get her scan results then.  Cheyenne was also set to see the plastic surgeon.  Dr Choi has a special place in our hearts.  He is always so compassionate towards our concerns and even towards how Cheyenne feels about decisions that have to be made.  He was so pleased with her healing, and amazed at how nicely her hair has grown in.  Because she had a scalp rotation, there is a chance that her hair doesn't lay flat and sit nicely(yes I know this is minor in the grand scheme of things).  Dr Choi's nurse, Brenda was so happy to be able to give Cheyenne hair clips out of the treatbox.   
Monday afternoon saw us back at Mac to see Dr McLean.  He is our ENT.  He did the nerve mapping for Cheyenne's surgery.  He now follows up watching for nerve damage, and issues related to her ear.  This can be because of the radiation and also her ear being displaced.  Dr McLean and Dr Choi both agree that the longer we wait before she has the second surgery to place her ear the better.
Tuesday morning we went to visit Dr Sabri, her opthamologist, also at Mac.  Cheyenne has some vision issues related to her chemo that haven't resolved yet.  Her one eye turns in.  They have watched this for 9 months so far.  She will go back in March for a different test(couldn't do it after they dilated her pupils) and that will determine if she gets glasses or not.  She was pretty bummed.  She wanted a pair of glasses.

Part 5 of our Alaskan trip
Friday was spent in Juneau, Alaska.  For our port adventure we headed out on a catameran to go whale watching and look for wild life.  Interesting fact about Juneau, there are only 2 ways in, by boat or plane.  This is the capital of Alaska and homeplace of Sarah Palin, governor of Alaska.



These are humpback whales.  They can be spotted by the mist shooting up from the water.  It is unusual to see this many in one sighting.  The pictures don't do justice.




The flip of the tail



A random blow




The kids using the binoculars to look for wildlife





We were able to get close to all these sealions.  There were hundreds of them.



We took a little secret with us to Alaska.  This little miracle is due to arrive in April 2014.



Childrens Wish-Part 4

Before I get to more photos I will give everyone an update from Cheyenne's scans.  We spent the majority of Wednesday at the hospital for various appointments.  The first was with the orthopedic surgeon.  Because chemo can affect their nerves, it often alters how they walk.  Originally Cheyenne was toe walking, and they were keeping an eye on this.  Lately she has been knock kneed(not sure of the actual term for this).  This seems to be more of a concern to the doctor so she is will be watching her closely.  We then headed up to clinic to have Cheyenne's port flushed, bloodwork done and results from her scans.  Everything was clear and the doctors are pleased with her progress.  They asked for some pictures of Cheyennes bump at various stages because they are using her for a case study at an upcoming conference on Rhabdomyosarcoma.  We then sat in the pre-op clinic for a long time.  The kind anaethetist told me that I can skip these appointments as long as her medical status doesnt change.  Thank-you!  Cheyenne's scans have now changed to every 4 months for the next year.  Thank you to everyone who kept us in your prayers.  I would have to say that this was the hardest set of scans and waiting for results thus far.  The emotional toll was hard.  I guess it is the knowing that she is now off chemo and there is a high chance of recurrance.  Its hard not to let those thoughts take over.


And on to our trip adventures:
Thursday brought us to our first port of call, Skagway, Alaska. 

mountains and glaciers

waterfalls down the mountains are plentiful

this is a snowplow that was used for clearing the traintracks, now on display at the museum, this was pulled out of retirement a few years back when they had an extreme snowfall

the white trail pass train heading up the mountain

here we are headed out of skagway, alaska towards Canada

Canadian-American border

lots of curves and steep cliffs, this trip isnt for the faint of heart

we are now in canada, the engine switches to the other end for the decent back down the mountain.  This tour showed alot of different historical places from the yukon gold rush.

family shot infront of the engine

Children's wish - part 3

We set sail from Vancouver at about 4pm Monday afternoon.  It was very busy on the ship between settling the kids in and trying to figure out where everything was.  The time change (we gained 3 hours when we flew to Vancouver) was hard on us all.  We settled into bed early that first night.

Tuesday came bright and early and with it came sea sickness.  The kids never seemed bothered but Dave and I spent the majority of the day trying to sleep or in the washroom.  I have no pictures of Tuesday, sorry.  Tuesday night we gained yet another hour (4hours total) of time. 

Wednesday was a better day, we travelled the inside passage where the waters seemed calmer and the speed a little slower.  The travel was made slower by the blanket of white fog.  By 1pm the fog had lifted and we were on track for our first destination.  We arrived at Tracey Arm, Alaska around 2pm.  These pictures do no justice to the beauty and pure, untouched creation.  The water is so clear.





A peice of the glacier that has broke off.

 



Mountains heading into Tracey Arm. 




The glacier from a distance.  Not that you can tell but there was seals in the water by the base of the glacier.  Without binoculars, you couldn't see them.



The ship got as close as possible to the glacier so that we could get a good look at it.

If you notice that the glacier is different shades of blue, it has to do with how long it has been exposed to the air.  In this picture a piece of it had just calved(that is what they call it) into the water.  The underpiece is a stunning blue colour.

From a distance



Dave and I in Tracey Arm.  We took a picture of the picture, hence the poor quality.

 We purchased a disk of the pictures that the professionals took while we were on the cruise.  But when we got home, realized that they had only included one of our rooms on the disk.  The majority of the pictures were under the other room #.  We contacted them but havent heard back.  Hence, no picture of the family. 
It has been a busy couple weeks of appointments.  Cheyenne has had all of her scans and we are going next wednesday for scan results. 

Childrens Wish-Part 2

I know you have all been waiting patiently and I am sorry for the delay.  Having issues uploading pictures so this may be more brief than anticipated.

Update on Cheyenne, she had her CT scan today and was a brave girl.  No tears, just a big girl who climbed up on the table and told me I could leave the room.  The change in the last 3 months is amazing.  She has grown in so many ways.

Heading up to the ship...

Recognize anyone yet?



The rear of the boat - Disney really goes the extra mile with details






The Disney Wonder- not a great shot but this boat is huge

 

The view from where we departed - any guesses?

Sail away party

Let the sail-a-bration begin!

A fruit basket to welcome us in our room

And different treats everyday, cheeses, desserts, etc

Leaving dock - heading out to sea, if you look very closely you can see people on the bridge waving to the boat



A very special meeting.  We had the opportunity to go up to the bridge(the cockpit of the ship) and meet the Captain and his crew.  Then we got a surprise meeting with Mickey

 


Brielle was slow to warm up to the characters, Cassidy just screamed NO if they got anywhere close to her

 Stay tuned to find out where we are headed.

Children's Wish-part 1

A couple weeks back a very special package came to our house....

It contained lots of cool things.....

shirts for the family, stuffed animals for the kids, luggage tags, a camera....

and airplane tickets for somewhere special.

We were packed and ready to go.  We spent the first night in a hotel at the airport.  The kids didnt sleep much and neither did we.  I was so scared of sleeping in.  We had to be at the terminal for 4am.  I was glad we packed (somewhat) light.  4 suitcases and we all had a carryon.  The kids had never been on an airplane.  To say they were excited would be an understatement.

The kids were busy for the flight, but well entertained with their backpacks.

When we arrived, the pilot allowed them to check out the cockpit.

Stay tuned to find out where our destination was.  And for those who know, please dont ruin the surprise.

september 2013-an update

I realize you are all probably wondering why the blog has been so quiet.  We have been very busy the past month and I admit I neglected keeping you all in the loop.  Although for obvious reasons I didn't really want to broadcast when my house would be vacant either.

The summer started out busy and kept right on marching that way.  We had the opportunity to go to Camp Trillium for a week.  This camp is for children and their families who have been effected by childhood cancer.  We had a great time and they think of everything to make it enjoyable.

Each child(the little girls shared) had a special friend.  This friend stayed with them from 8am until bedtime.  They had tons of activities planned.  Note to self-dont take decent clothes next year.  The kids have fun, and they get really messy.

We stayed in cabins, and i did not enjoy sleeping on a bunk bed.  Sorry no pictures of that one.

One night after supper the firefighters came and let the kids play in the trucks(no restrictions), spray the water hose and it was a hoot.  Our kids still talk about it, and I think Dave was pretty impressed too.

As a woman, I enjoyed having someone else make the meals and do the dishes.  The food was great and they have some really cool chants and songs.  One of their awesome things is that they make a cake for each family who has finished chemo in the past year.  At the last lunch they serve these 'No more chemo' cake.  They have a huge banner and the councellors are singing.

Its going to take me a couple blog posts to catch up so I will give you an update on Cheyenne now.  Her energy is coming along in leaps and bounds.  She still tires easily and this is something we have to watch now that she has started school again.  Her hair is growing thick and its about the length of a boys cut now.  She can almost keep a hair clip in it.

Her next appointment to get her port flushed is September 20th.  At some point soon she needs blood work done also.  They are doing a repeat echocardiogram of her heart.  She had one done in June, everything looked fine and havent gotten a reason as to why it needs repeated.  Her CT is booked for October 3, and her MRI is October 10th.

Please keep us in your prayers during this time.  The anxiety surrounding the scans is hard on Cheyenne and us.  This one is even harder because she has been 3 months off treatment.

I would also ask that you keep my brother in your prayers as well at this time.  Peter has been admitted to hospital with a serious blood infection.  He has made great improvements since they changed his antibiotic tuesday, and will probably stay in hospital til early next week.

Update July 23, 2013

I know it has been a few weeks since the last blog post.  Life has been busy so I will try to capture the past weeks in one post.

A couple weeks back we were able to go camping for the weekend in Selkirk.  It was a nice clean and open park but the beach was rather stoney.  Either way, we had a great time out with just the 6 of us being a 'ordinary' family.  The kids had a great time at the beach, riding their bikes and having a campfire.

the joys of ringalo's

 

We have a had a few appointments with the Oncologist and as of last thursday the NG tube came out!  Cheyenne had gained 2.5 pounds in 2 weeks and much to her frustration Andrea pulled it out.  She yelled at her 'Now I have to take my medicine in my mouth'.  I have figured out how to successfully get her meds into her, though as her taste returns she may figure it out.  For now ignorance is bliss as she is perfectly happy thinking that she no longer has to take medicine. 

Thursday we also celebrated Wyatt's 7th birthday.

 As some may know we had a celebration party for the end of Cheyenne's treatment.  I will start with an apology because I have received some invites returned in the past few days and know of some others that never reached their destination.  Not very happy with Canada Post.

Here are a few pictures I am *using* from Leah K.  Thanks

Cheyenne's Journey...

Not too shy to shave...

48 weeks...

Chey's Cheerleaders... these are just a few

To God be the glory...





Cheyenne's Great-Great Uncle John with his Pony Rides

A few of the kids who made use of the bouncey castle

I don't have a picture of the meal but we enjoyed beef and pork on a bun, and a large selection of salads.  Thanks to all who had a part in making the meal happen.

Hello Kitty cake by Aunt Tori

Candy Bar - this is what happens when a 5 year old helps plan her party with Aunt Sarah
Oh and you can see the Sno Cones being made in the background



Sugar station- again Hello Kitty style.  Cupcakes, sugar cookies and watermelon. 



We had a great time.  It was slightly overwhelming and I apologize if I didn't get a chance to talk to you.  For those who were unable to attend, I will try to get more pictures up for you

Also there were 3 folding chairs abandoned at the farm

1. blue 'tiny tot' chair

2. blueish grey, no arms

3. black with a logo on the armrest

If any, or all of these chairs belong to you please let me know.