Monday, November 26, 2012

Halfway thru radiation!!

Today Cheyenne had her 10th radiation treatment.  We are at the halfway mark.  Cheyenne loves going for 'picture therapy' as she has renamed radiation.  She is good about going, willingly climbs up on the table and puts on the mask.  And thru the mask you can see her smiling.  The staff at the JCC love her too.  She spends the first 10 minutes talking to the receptionists, feeding the fish and writing her name on white boards (Mrs Munro would be proud, she can spell her name).  She has figured out different hallways and doors to get to her treatment room with the technician, I am not allowed on the secret passageway because as Cheyenne so sweetly points out "You don't have cancer Mom!" 
Thankfully the fog has let up this week.  Last week the fog was extremely thick, and traffic wasn't slowing down for it, made for a slightly hectic drive.
I'm being a 'sebatary' Mom!
Cheyenne was admitted on thursday night for chemo.  She only had to take 2 of the 3 meds this round.  Her one medication is not compatible with radiation  so she will not get it again until after radiation is complete.  Another bonus was we were allowed to leave around 10pm friday night instead of waiting for the dr to come and do discharge saturday afternoon.  We just had to hydrate her through her NG tube during the night.  It was such a treat to wake up at home, and the kids were so excited to see each other.  Its amazing how 2 days makes them best friends all over again.
In the last few days Cheyenne has lost her hair again.  She doesn't seem to care.  It's just from the chemo is her nonchalent reply.  It will grow back!  I was just getting used to her soft 'duck fuzz' hair(you really notice in the above picture). 
These past couple weeks have been busy, but we have found a new routine.  We appreciate everyones care and concern, and we are so grateful for your prayers. 

Friday, November 16, 2012

Radiation

Sorry to have kept you all waiting on an update.  The last few days have been busy.  Cheyenne started her electron radiation therapy on tuesday.  This was her first of 20.  She was alittle upset at first, but quickly calmed down and co-operated.  It takes about ten minutes to get her all set up and about 30 seconds to administer the radiation.  She goes every morning and has made alot of new friends.  She starts out the day by feeding the fish.


The red portion is a wax mould that sits on top of her mask to 'mimic' skin so that they can be more precise as to where the radiation effects.

'The Beast' - the radiation machine that delivers the precise dosage needed in the exact location
The lead shield that directs the radiation to the needed area and protects the surrounding areas

This has been a busy week with other appointments also.  Cheyenne had to visit the ENT for her check-up and then have a hearing test done.  Radiation can effect her hearing, as well as chemo.  Also because they displaced her ear with her surgery they want to keep a good eye on it.


Getting her hearing tested - she wasn't so sure about this!
 Yesterday Cheyenne also received her outpatient chemo.  She was a champ!  She went to fingerpoke and willingly chose what finger they could use.  Then she went up to clinic and got her port accessed and chemo administered with NOT A TEAR.  This is huge.  When Cheyenne started out it took about 4 of us to hold her down.  We have figured out that you just agree with her that it is a 'soft, dull needle' because the sharp ones 'really hurt'.  I'm pretty sure she gave the nurse a chuckle.

At school, they give out awards every month for various character traits.  This month was COURAGE.  Cheyenne was the recipent for the kindergarden class.  They are so proud of how brave that she is being.  She was also presented with a get-well card that the entire school had signed.  It was moving, and I couldn't help but cry to see how proud they all were of Cheyenne and how supportive of her battle.  I will try to upload the videotape to the blog.

Thanks so much for all the support, love and prayers that have been shown to us.  We are so thankful for your prayers.  

Saturday, November 10, 2012

Answers and a schedule

Yesterday we met with the radiation team again, and we got some concrete answers.  It has taken a couple weeks for this to happen and I will explain why.  The area where Cheyenne needs her radiation is very superficial (thin, close to surface), and seeing as they already removed the tumour they are doing this as 'insurance'.  Radiation doesn't affect the first few layers of skin(which we need), and because the temporal lobe of her brain is so close they were worried about the long term damage it would have on her.  After alot of research, scans and consults with other hospitals they have agreed that Cheyenne is able to proceed with electron therapy radiation.  In doing this, they have also determined that she needs less treatments than originally thought, only 20(as oppossed to 28).  Electron therapy is available at Juravinski Cancer Centre.  She would go monday thru friday for four weeks.  She is scheduled to start this coming Tuesday.  It will still make for a long day as it is about a 45 minute drive both ways, as well as treatment time, but it means that we are still home.  The other option we were originally told about would mean a relocation to Boston for Cheyenne, myself and the baby.  There she could receive Proton therapy.  Boston is a 9+ hour drive from home, so even coming home for weekends wasn't really on option. 
Yesterday when we went they were lining Cheyenne's mask up under the machines with her specially-made lead template(I will take pictures, but I forgot my camera).  This is to shield and protect the surrounding area.  This was not easy for her as they had to keep checking the position and doing scans and we had to leave the room.  I think the hardest part was that they kept shutting off the lights.
The actual treatment is only going to take about 30 seconds.  The bulk of the time is setting her up before the treatment.  Because they need to treat the skin, they will place a 'wax' plug on top of the area.  This 'tricks' the radiation into thinking that it is skin and then the depth where the radiation is most effective will be at the area that needs treatment.  This is the easist way to explain it.
Cheyenne will still proceed with her chemo during this time  She received her vincristine yesterday, no tears!  However there is one medication that she can't have during radiation.  Even though we are going to 2 different hospitals currently, they are both Hamilton Health Sciences so we were able to change our parking pass to multi-site at no extra cost. 
Please pray for us as we start this radiation treatment
  • safe travels to and from the hospitals
  • peace for Cheyenne as she is anxious about 'wearing the mask'

Monday, November 5, 2012

Update and pictures of Cheyenne's mask mold



Cheyenne is home and doing great.  She has only been sick once, and is in great spirits.  We have another appointment wednesday with the radiologist.  Hopefully we will get some answers and a plan then.  If the pictures of her taking the scan don't appear click on 'read more'.

In the waiting room - Daddy was tired!

the puppy dog pattern that Cheyenne picked for her masking

We had to tape over her NG tube to keep it from getting accidentally pulled out (Cheyenne doesn't like anyone touching her tube, hence the tears)

Laying on the headrest waiting for the molding.  You can see the mesh in the top right corner.  It starts as a hard plastic that they 'soften' in a hot water bath (similar to a chafing dish).  

Lining up the pegs.  The top mold will sit on the pegs of the headrest.  The two are then screwed together to immobilize her head.


Shaping the mesh around her face.  It takes a couple minutes to harden up.  Cheyenne didn't like everyone touching her

The finished product



Thursday, November 1, 2012

Admitted for Chemo

Thanks so much for your prayers today.  Cheyenne did great.  She was a little upset at first when they were going over everything, but she settled down and was a pro.  She was able to pick a puppy print to go over her mask.  I took pictures of them making it and will post when home. 
We still don't have concrete answers as to when her radiation will start.  They are hoping to have answers by the middle of next week.
Cheyenne has been admitted to the ward and will be receiving chemo tomorrow.  So far she is chatting up a storm.  Her nurses are amazed with the difference. 
Cheyenne says HI to everyone.