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.

scan results

Just a quick note to let everyone know that Cheyenne got her CT and MRI results today.  Everything was good, and no evidence of any tumour.  They were able to tell by her MRI that she has a sinus infection.  She has had a runny nose the past week so we have to keep an eye on it and if she develops a fever then we are to head in for antibiotics and observation. 

Happy Canada Day

Myself, Cassidy and Cheyenne

if you look close you can see Brielle peeking out the window

Happy Canada Day everyone.  We had a great morning out at the Lynden Canada Day Party.  We went in David's work truck with the kids.  They loved the idea of it until Cheyenne noticed that people were looking at her.  That was enough for her. 
Last week was a busy one.  Monday started out with a class trip for Wyatt and Cheyenne to the Twin Valley Brantford Zoo.  They had a great time despite the drastic heat and humidity.
Tuesday morning we headed off to the hospital for Cheyenne's CT appointment.  The hospital is in the midst of their construction so we were sitting in the old CT area for a bit before someone noticed us and sent us in the right direction.  Cheyenne was great and went in by herself and we were done in about 10 minutes.
Wednesday was a special day at school for Cheyenne.  You may remember that last week there was a picnic at school and a bakesale also to raise money for The Bravery Bead Program.  The school had a closing assembly where they announced the total raised and presented the cheque.  The money was donated to McMaster in Cheyenne and Mateo's name.  Mateo finished his treatment for leukemia last august and is one of Cheyenne's classmates

And the total raised was $1059.00
(L-R)Vince and Mateo Formiglio, Cheyenne and Sonya DeGraaf, Mrs Munro-Cheyenne's Teacher

Thursday was the last day of school so there was lots of excitement around the house.  Knowing Chey's test was later in the day I let her stay up late so I could get some snacks into her and then hopefully she would sleep in a bit friday morning.  So much for my plans.  Shortly after 10:30pm I received a call from the hospital that there had been a cancellation and Cheyenne could have her MRI at 815 instead of 1245.  So it was an early morning up and going, dropping kids off and heading to clinic to get accessed for the MRI.  Once her port is accessed. the nerves kicked in.  As we headed down the hall to MRI, she started to cry and say that she was scared.  Once we headed in we kept to the usual pattern.  Cheyenne won't lie down to get sedated, instead I sit on the bed with her and hold her 'til she falls asleep.  The MRI usually takes about an hour and then it takes some time for her to wake up. 
While in the waitingroom I met a mother whose son was getting an MRI also.  Little Danny is 3 and had a brain tumour(benign) removed in March.  Because it was non-cancerous he didn't have any treatment but is monitored every 3 months for growth.  Please keep this little boy in your prayers.
We head back to clinic on Friday.  Her counts was ok last week, but it could still take time for her cloodwork to stabilize.  Her platelets are still high, and her haemoglobin is on the low end.

The past few weeks - June 22, 2013

The last couple weeks have been busy, with something going on almost daily.  Welcome to the summer. 
Last week Cheyenne had a small celebration with a few girls for her 5th birthday.  They had alot of fun decorating cupcakes and playing together.  It took Cheyenne about a half hour to actually join in and play.  The first bit she just watched quietly from the couch.

Cheyenne had her clinic visit thursday, her counts were good, but we knew that they would be dropping in the coming week from her chemo.  Earlier in the week she was able to join her classmates at school for a couple days.  She still puts up a fuss getting on the bus but she is slowly understanding that I am not backing down.

Last friday night we were excited to be able to attend the Relay For Life in Waterdown.  We missed the Cambridge one because of her admission.  We walked the Survivor lap with Cheyenne.  I dont think she understood what all it was about, but she is excited to have her own team next year.  Just looking for an appropriate team name. 

On Saturday (Cheyenne's actual birthday) we headed to Marineland with Help A Child Smile.  I would put pictures up but it takes a couple hours.  Cheyenne was hilarious and no fear on the rides.  Dave and I were a good team.  He did the height rides and I did the ones that spin.  Im not saying I can handle the spinning ones(we have learned Brielle HATES them all), but if you close your eyes and tell yourself to get through it, it makes it easier.  All joking aside we had a great time as a family and it was fun to bump into the other oncology families from the hospital, in a better setting.

This week Monday Cheyenne's School held a picnic in honour of her being done her Chemo.  The kindergarten families donated baked goods and money was raised for the Bravery Bead Program.  It was amazing to see the support and a great time.  Wednesday they are having an assembly and the final tally will be announced. 

On Tuesday Cheyenne had to go see Dr Sabri for her follow-up appointment with her eyes.  She hates the dilation drops but because there has been some concern with her tracking and her one eye crossing, they have to be sure that there is no growth behind the eye, and no damage to the optic nerve.  We had it checked 3 months ago, and her follow-up was now booked for 6 months.  Everything looked great.

While we were at the hospital Tuesday Cheyenne was acting lethargic and not herself.  The kind of behaviour that usually means a fever is brewing.  We had her checked out at clinic and went home.  She has had low grade fevers off and on until yesterday.  It finally broke last night.  Her bloodwork yesterday showed she was neutropenic and again we were given orders to watch her closely.  I can usually tell by how she is acting how her counts are.  If she continues to improve then she will be able to attend her class trip monday. 

In clinic yesterday we had a final hip hip hooray from the nurses, parents and other kids.  I never taped it, but there wasnt a dry eye in the room.  We also had some of our friends join us for it.  Crystal and her mom Ida travelled in for it, and we had a surprise visit from someone that has been done Chemo for abit now.  It made my day.

Next week Cheyenne has her CT on Tuesday(unsedated) and her MRI on Friday(sedated).  Please continue to keep her in your prayers, treatments are over but the journey is not.  We will not find out her results for 2 weeks, so it may be a trying couple weeks.  If you see me please dont ask if I have gotten results.  That just adds to the stress.  I will post results when I get them.

Last Chemo complete-pics and video

I am having issues getting pictures to upload, sorry it has taken so long.
Cheyenne was delayed from wednesday night admit to thursday due to bed shortage at the hospital.  We are rather fortunate because this has only happened twice.  Some families have it happen on a regular basis.
Cheyenne had a consult with her plastic surgeon friday morning.  Dr Choi recommended that we do Cheyenne's reconstructive surgery in 2-5 years.  We were originally told 1 year post chemo, however because there is such a high risk of recurrance with rhabdomyosarcoma it would be wise to wait until we have had multiple clear scans.  Because she has already had radiation to that area if it was to reoccure the only option is for removal/chemo.  Each surgery leaves scar tissue and it would mean less skin for them to work with if she had to have subsequent surgeries.
Cheyenne got her chemo friday around noon.  Once she was finished(you can't leave your room when getting chemo), she had to change her clothes and show off her 'all done chemo' outfit.  I know some have already seen these pictures through facebook but for those who havent....

Nicole and Cheyenne

Some of the staff

She also got a little hip hip hooray from some of the staff friday afternoon.  Sorry but i missed the beginning of the video where they made the announcement.

We left the hospital late noon saturday due to the fact we had to wait for a discharge order from the doctor.  I was privy to a little surprise that was being arranged but that still didn't prepare me.  I'm glad no one caught a picture of me, I am brought to tears easily these days.  This is what met us as we drove home.

NO MORE CHEMO FOR CHEYENNE

And a close up of her outfit.

YIPPEE NO MORE CHEMO FOR ME

Thanks so much to all who have kept us in your prayers over the past year.  We still have alot to deal with in the next few months and so now that we are done with chemo, we are going to spend the summer with follow-up appointments and doing things with our little family.  We spent much of last summer in hospital and isolating ourselves from the 'germs'.  Although this will be better it won't change overnight.  Cheyenne will still have a poor immune system for up to 6 months.

And I can't help but add this last picture (not of Cheyenne, but one of her biggest fans.)

Cassidy waiting patiently for Cheyenne to come home

Delay-June 5, 2013

We just received the call from the hospital that they don't have a bed available to admit Cheyenne tonight.  She went this morning for her bloodwork and physical.  She recovered well from her fever last week.  Nothing ever came back from the bloodwork so it was more than likely viral.  Hopefully we will be able to get a bed tomorrow night and she can get her last chemo on friday.  I will keep you posted.