December 29,2012

Just a quick note to say that we are all well, so far have avoided the cold and flu circulating.  Buzz at the clinc is that measles and chicken pox are circulating.  Our fear, so if you know anyone in our direct vicinity with this PLEASE let me know ASAP.  Cheyenne's counts yesterday was good(platelets and such) but her immune system is pretty low.  Please NO physical contact with her (NO hugs and kisses).  This applies to everyone!
We were so fortunate being able to celebrate Christmas at home, others were not as fortunate.  There are some who may be celebrating their last Christmas with their families and others who had to spend it in the hospital fighting for their life.  Cheyenne's friend Crystal is poorly and has just spent 5 days in PICU.  Please pray for her recovery.

This was taken during our last hospital stay together

 
Cheyenne is scheduled to be at clinic next thursday for labwork and be admitted thursday night for Chemo on friday. 
The kids are outside playing in the snow.  I will try and post some pictures later. 

Scan Results.

Just a quick note to let you all know that we got Cheyenne's scan results back.  Everything looks great and there is no evidence of disease present.  This was the best gift we could have asked for.  Thank you for keeping us in your prayers.  We are looking forward to the holdays coming up.  Lots of family get togethers, but especially enjoying time with just our little family.  We hope you all enjoy the holidays and cherish the time spent with your families.
 Glory to God in the highest, and on Earth peace, goodwill toward men. Luke 2:14
Merry Christmas, love the DeGraafs

CT and MRI done

I will pick up where I left off last week.  Cheyenne was seen in the clinic Thursday morning for fingerpoke and to have her physical.  Her bloodwork was great and the doctor was amazed that Cheyenne is this far into her chemo and has not had blood products or a transfusion.  She has also not needed the growth stimulant to help boost her counts.  These are both huge things in the world of oncology.  She bounces back and is in great spirits.  For this we are truly thankful. 
   Thursday night we were admitted to the ward for hydration, and chemo on Friday.  We got paired with Cheyenne's friend Crystal and we had a great time.  My girls loved it and Cheyenne spent more time in Crystal's bed than her own.  But, they kept each other occupied and it was so relaxing to be with someone you know.  We did get the nickname of being the party room, but thats okay ;) 

Cassidy

She was trying hard to get Crystals IV line

Who knew that bedrails would contain a baby?

best buds

We also were right next door to little Charlotte.  Cheyenne was able to have a visit with 'Grandma Teresa', Chey loves seeing her.  This time of year is busy at the Hospital.  On Friday the Mayor of Hamilton came in to visit and gave the kids books. 
Our Doctor was so kind and wrote our discharge orders Friday so that we could leave after her morning meds on Saturday.  Usually we have to wait for the doctor to do their rounds and it takes forever to get out.  This was so nice, we will definately have to go that route again. 
As we are becoming very aware, nothing is ever written in stone.  Never make plans you aren't ready to change.  Friday afternoon we found out that instead of a MRI on December 24th, they would do and MRI and CT scan on Monday the 17th.  We left Cheyenne accessed(IV in port) when we were discharged Saturday.  When we arrived Monday morning Cheyenne was already worried about her 'sleepy medicine'.  Rico(our sedation nurse) asked if we thought Cheyenne could do the CT without sedation.  This mommy was so proud!  Cheyenne had no problem laying down and staying still for the CT.  This is HUGE, it means that a test that normally takes us 5 hours plus painful fasting, can now be done in 30 minutes.  The MRI is a different story.  That machine is LOUD!  To do it without sedation isn't even an option at the moment.  Just to scan her head takes about an hour, and Cheyenne complains that loud noises hurt her ears. 
Tuesday afternoon Cheyenne had to see the ENT Dr McLean.  He was impressed with her healing thus far, and has said that she can now be seen every 3 months.  Wyatt had to see the same ENT on Tuesday.  I think he got a taste of the painful things she has to endure.  He hasn't complained since.  They attempted to put a scope up his nose (it was smaller than Cheyenne's NG tube).  They needed to see his adnoids.  He had instant reflex and hit the resident doctor.  I didn't even have a chance to reprimand him, Cheyenne (aka mother hen) jumped right in explaining that its okay to scream when something hurts but you must NEVER hit the dr/nurses, they are here to help you.  I had to hide my face because as serious as the situation was, I was bursting with laughter. 
Cheyenne has her clinic appointment and vincristine chemo on friday morning.  She is also sceduled to see the plastic surgeon for her post radiation check-up.  It will be a busy morning but then we are off until the following friday. 
I will post if we get any results on friday.  Thanks for praying for our family. 

A small rest

Cheyenne had her last of twenty electron radiation treatments on Monday.  She was so excited to have her pajama party, and her purple cupcakes.  The girls treated her like royalty, and she loved every minute of it. 

Marcy and Cheyenne - Vanessa is missing, but these are the ladies in the booking office that let Cheyenne feed the fish and write on their whiteboard.

Cheyenne's radiation techs (L-R)
Kash, ?Elham, Cheyenne, Dinitra and Janessa in their jammies.

Jammies and jewelry, notice Cheyenne convinced them to trade gold for plastic

Now that radiation is done her appointments are only twice weekly for the next little bit.  She has numerous follow-up appointments with specialists lined up as well as her regular clinic appointments.  Cheyenne will visit the ENT next week to assess her inner ear.  Radiation can have a damaging effect on her ear so she will be monitored closely.  This is also the same doctor who headed her removal surgery so he monitors her facial nerves also.  Next week she will see the Plastic surgeon as well, again to monitor from the radiation.  His concern is the skin and the reconstruction site, healing is effected.  We also received word this week that she goes of December 24th for her post radiation MRI.  This will be done under sedation.  Not because Cheyenne couldn't lie still but because the MRI machine is very noisy and loud noises bother Cheyenne (her own doesn't count).  They are looking for any existing cancer.  Please pray for us as we wait for the results.  Because this is happening over the holidays I am assuming it will be at least 2 weeks before we get results.

I have enjoyed the last few morning to get up and not have to rush out.  The kids have loved it too.  I will be open and honest and tell you that the last 6 months have taken its toll on the kids in different ways.  The last 4 weeks have exacerbated that effect.  I would just ask that people be aware of their actions towards Cheyenne for a couple of the following reasons.
Wyatt gets upset and feels displaced very quickly.  He sees all the fun things Cheyenne gets and that blinds him from seeing the pain that she endures.  I realize that this is a heart issue for him and I do not want him to resent her and be bitter because of Cheyenne's illness.  Giving Wyatt things is not the answer either.  It is such a hard balance.  I tried taking him with me a couple weeks back to rads and clinic so that he could understand what Chey has to go through.  He saw her get her head screwed into the mask, get a fingerpoke and her port accessed.  His assessment of the day...she gets alot of food.  For those who don't know Wyatt, he refers to his stomach as his food hump(just like a camel, haha). 
Cheyenne has come to think in the past few weeks that she is the boss of her siblings.  We struggle with her behaviour after she has been constantly surrounded by adults.  She thinks she is an adult and she has authority to 'rule' over the other kids.  She also thinks that she is entitled to have as she wants.  She has gotten really good at munipulating lately, divide and conquer.  I would ask that when around Cheyenne that you PLEASE respect our authority.  This means if we say NO, obedience is not an option.  People may think it is harmless to give in to her over 'a candy', but for her small victories just encourage the negative behaviour.
Brielle is attempting to mimic Cheyenne's behaviour (except her little 2 yr old brain isn't quite as good at it).  Brielle has also taken to her own form of self-defence, her water bottle up the side of her siblings' head.  Have to say she probably comes by that honestly, I fought dirty when  I was little ;)
Cassidy is my mellow baby, but she is strong willed.  We have tried multiple formulas and different bottles and she is just starting to take a bottle at lunch.  I think she knew that if she took the alternative then she would get the alternative.  At 11 months she is taking 4oz of goat milk with her lunch.  I say that proudly, it is an accomplishment.

Over the next weeks could you please keep all of my children in your prayers.  It is especially my burden at this time.  We appreciate so much that you are praying for our family and helping to share our burderns on so many levels.  To those who have lovingly prepared meals for us, and those who have opened their homes and babysat our children and the financial sacrifice people have made.  It has not gone unnoticed, and it is so humbling to see how God is bringing us through this trial yet supplying all our needs. 

Cheyenne is slotted to be admitted thursday night for chemo Friday.  This will depend on bed availability and of course her blood count.  I will let you know.
Thanks

Almost done Radiation

Today Cheyenne had her 19th radiation treatment.  Monday will be her final radiation, or as she calls it 'picture therapy'.  As glad as I am that she will be done her rads, there is a certain sense of reluctance to walk away.  Cheyenne has become very close with many people over the past 4 weeks.  She has her own little fan club, as we walk through the halls.  She starts out by saying hello to the Canadian Cancer Society volunteers, then down the elevators (chatting to whoever is her passenger), then she signs in at the reception desk, next she is off to the booking office to get the fish food and nourish her little friends.  Until it is her time to go in for radiation she wanders around and does her office work.  This means stapling, taping and drawing on any piece of paper that isn't spoken for.  She always has the same 4 rad techs, but she calls them her friends.  These gals give her piggy back rides down the halls, take her through secret passageways, even dance with her.  For Cheyenne this is what her treatment is about.  When we are done her treatment we head back upstairs where she stops at the main reception for her cherry candycane.  They have also stocked her up on her winter hat collection and a couple scarfs too(specially made to match her coat). 



This is for you Mrs Munro.





Just done her radiation




Here is the PRO!




Dinitra and Cheyenne



After her treatment on Monday they are going to have a little party.  Cheyenne volunteered me to make the cupcakes and instructed them all they were to wear pajamas too.  This should be interesting!

Once we were done radiation today, we headed to McMaster for bloodwork, and chemo in clinic.  Cheyenne had a panic attack when she noticed there was a new nurse, but after they talked for a few minutes and Cheyenne inspected her cool Tinkerbell scrubs all was well and she willingly exposed her port to be accessed.  No tears for chemo.  Cheyenne needed to inspect the newly renovated Ronald McDonald Family Room, and we took a walk over to the ward to see the nurses.  We also visited sweet little Charlotte and her Mommy.
Thanks again to everyone for all your support, help and prayers.  We appreciate your love and kindness.

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. 

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.  

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'

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



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.

still waiting....

I realize you have all been asking what is going on with Cheyenne's treatment.  Chemo?  Radiation?  When?  How much?  And the only answer that I am able to give you all is that we still don't know.  I have had about 15 different answers thus far and seeing as it is ever changing I will give you the little info that I do know.

Cheyenne has an appointment tomorrow at the Juravinski Cancer Centre to have her mask made for radiation.  Once the mask has been made they will do a CAT scan of her head (Please pray for all involved because this will be done without sedation).  Once they get the results of this scan they will be able to make a better judgement regarding her treatment.  The easiest way to describe it is that the area being treated is very close to the bone.  And the temporal lobe of her brain is on the other side of the bone.  They have to be very careful as to the amount of radiation that Cheyenne is exposed to so that she doesn't suffer from long-term damage.  There are different options available to us, and we are waiting patiently for the doctors to come to their conclusions.  Please pray that the doctors will have wisdom as they make these decisions.
Originally we were told that Chey would receive chemo along side her radiation, then we were told no.  Today I received a call to say that I was to be prepared for admit thursday night for chemo on Friday.  All this is tentative, and we will get our final answer tomorrow.  Reason being is that one of her meds can not be received while on radiation.

It can be very frustrating with the constant change and not being able to plan and such, but I have confidence that they are doing what is BEST for Cheyenne.  I know that they are spending time researching what would be optimum in her situation. 

Thanks for being patient I will update once I have more information.

Yesterdays appointment was rescheduled

Just as we were about to leave for yesterdays appointment, we received a call from our nurse Andrea.  The Doctor who we were to meet with and discuss Cheyenne's radiation therapy was sick.  We have rescheduled the appointment for Monday @3:30.  Cheyenne then has her follow-up with plastics on tuesday afternoon and her clinic appointment then also.  Hopefully I will be able to update everyone by Wednesday.

An update-October 19, 2012

   I know it has been awhile since I last blogged.  Things have been relatively quiet, and more of a waiting game lately. 
   Today Cheyenne had her bloodwork done (looked great) and was seen by Dr Choi(plastics).  He was very pleased with the healing thus far.  The skin graft behind her left ear is almost healed.  The tumour site still has a bloody scab.  This scab must be completely healed before chemo can start.  We don't have another appointment with plastics for 11 days, so hopefully she will be good by that time.  It will probably be 2-3 weeks from now by the time her chemo resumes (she has 36 weeks remaining), but final decision is up to Dr Choi.
   We visited with Dr MacLean (ENT) who monitors her facial nerves and ear.  He feels confident that the nerve and muscles are intact but stretched and weak and thus need time to strengthen and retract.  He will be following Cheyenne closely over the next months.
   This coming Wednesday we have an appointment to meet with the Radiologist.  We were informed that Cheyenne must have radiation even though they got all of it.  We will not know any details about when, how long, how much until after this meeting.  All I know so far is that she will have to go to the JCC (Juravinski Cancer Centre) for this.
   We have really been enjoying our 'normal' time at home right now.  Cheyenne still tires more easily than usual but she is very much like she was prior to the tumour.  She has been able to spend some time at school, and she loves it.  Thank-you so much for your continued prayers for our family.

October 8, 2012

Friday, Cheyenne had her follow-up with plastics and oncology.  The results from her surgery were in.  They were pleased that they had not only got all the tumour, but they got negative margin test results.  There is still a high probability that she will need radiation therapy.  We will get the final verdict on that next friday.  Cheyenne's bloodwork was good also.  Post-op her counts had dropped quite a bit, but they had recovered by yesterday.  Dr Choi (plastics) was very pleased the healing thus far.  He changed her dressing to a very low maintenance dressing that requires no tape (she has alot of anxiety having the tape removed).  He is a very sensitive doctor to Cheyenne's feelings and needs.  So her basic dressing is aquacel ag covering the skin graft area held in place with an elastic stockinette.  The rest of her incisions need polysporin once a day. 
We do not have any dates yet as to when her chemotherapy will resume as the Plastic surgeon needs to be happy with the healing.  He has final say. 
Cheyenne is up and bouncing around and acting like her old self.  I don't think we realized how much this was affecting her. 
We are so grateful for the doctors' wisdom and experience, but ultimately we give glory to God for his guiding hand and unfailing love.
Tomorrow Cheyenne has a follow-up with Dr Maclean, the ENT specialist who was in charge of the surgery.  He will check on the nerves in her face.  Their primary concern was her eyelid still functioning to protect the eye.  We have not seen any problems.  She also has another appointment booked for Friday with Plastics again. 

We are Home!

I am glad to say that we are home.  Cheyenne was really good the past few days.  She responded well to the nurses.  She wasn't exactly excited to be sedated yesterday for her dressing change, but to be fair the last time they sedated her they did major surgery.  I can understand her distrust.  While she was sedated we took off all her stickies and IV's not needed.  They also changed her dressing.  Healing will take time and her scars will eventually fade.  She was a champ today getting her port de-accessed.  She even surprised herself "I didn't even cry". 


Cheyenne with her 'bow' on the stocking hat...we are starting a new trend!

 Cheyenne will go back friday for bloodwork and a dressing change.  The wound is fairly complex where they did the skin graft, so they will do the first few in the Plastics Clinic.  Then as she becomes more tolerable of the dressing changes, we will have the nurse Jenn do them at home.

Thanks for all who sent crafts and gifts to entertain Cheyenne.  We appreciate the thoughfulness.  And thanks to those who came for visits. 

Thanks again for all who have so faithfully and fervently prayed for Cheyenne over the past week and months. 

She is smiling!!!

Wednesday just done the surgery, in PCCU

The last couple days have been hard.  Hard because you see your child laying in a bed knowing that you consented for the doctors to perform the surgery on them.  In my head I know the medical reasons and all the risks, but to actually see them laying there, you can't be prepared for.

Thursday Morning



Getting ready to transfer.  Notice how BIG these rooms are.  They were just recently moved and updated.



Thursday afternoon-swelling starting

backview

right side- She will still require another surgery down the road for the cosmetics part-the repositioning of the ear and to fill the hole left from the removal of the tumour

Moved back to familiar ground

And for those who ask how we do it taking cassidy along.....here is her living quarters!

The swelling that she has is starting to get better, but it does get worse before it can get better.

Poor thing, her eye was completely swelled shut yesterday morning

This morning Cheyenne is smiling, talking and giving orders.  For those who know her, this is her normal.  Her pain is under control mostly with tylenol.  She has no complaints about her head, but the skin graft on her buttock is uncomfortable to her.  She is unaware of the meaning of the pain.  In her mind she has determined that the catheter had a needle on it and left her a sore.  I am not going to correct her yet.  I'll tell her the truth when the pain is in her distant memory. 

On the day of Cheyenne's surgery, her school had the Terry Fox run and the Pogo Raise awareness for Childhood Cancer.  Mrs Munro (Cheyenne's teacher) sent me a few pictures.  It brought tears to my eyes.  All the little kids with their stickers saying "I am running for Cheyenne".  I am only including a couple pictures of the sidewalk, I think you understand why.

Thank you so much to everyone for your thoughts, prayers and kind words of support and encouragement.
love David and Sonya

Out of PCCU

This morning Cheyenne was moved from Pediatric Critical Care Unit to the oncolgy ward.  The move was surprising to us because we had been told she would be be in PCCU for a couple days, but there is a certain calmness and relief being back on familiar turf.  We are known by the staff while walking through the halls, and Cheyenne loves her nurses.  Cheyenne is quite swollen, and it will get progressively worse over the next few days .  This evening she was awake for an extended period of time, up to that she was drifting in and out.  We were told that this had something to do with her being under anaesthetic for over 9 hours.
Cheyenne isn't really talking right now.  It makes for a long day not having her to talk to.  Thank you for praying for us over the past few days.  It has been exhausting, and I am tired, so good-night.

surgery is complete-6pm

Cheyenne is out of surgery and moved up to ICU as of 7 this evening.  It has been a long, exhausting day.  The doctors are pleased with the outcome.  All tumour was removed and the rotation and graft was completed.  I'm not going to lie, she is a very sore looking girl and I took a second glance because I didn't recognize her.  She has some swelling and they have warned us that it will get worse in the next week.  She will be in ICU for the next couple days and in hospital for at least a week.  Her wounds are covered to keep her from picking at them.  They will sedate her to change the dressings and check the graft in 1 week.  They have an iv into the artery at her wrist, and she is hooked up to numerous monitors.  She is extremely groggy still (that in part is due to being under anaesthetic for 9 hours). 

Midway through surgery-1pm

First of all we would like to say thank you to everyone who has kept us in their thoughts and prayers today.
Cheyenne was taken in to surgery around 9 this am.  She was not impressed with me, she kept asking me to take her home.  Last week she told me she would "keep 'bumpy', he is getting small and I really don't want the dr to cut me with a sharp knife".  In all fairness it was slightly overwhelming walking into a OR room with over 10 people staring at you.  The surgery today is being done in two parts.  The tumor was successfully removed with 'mimimal' nerve damage to her face(they won't know for sure until after surgery).  The doctors then waited until the got back a frozen section pathology report from the margin tissues.  They came to let us know that the preliminary results said cancer was not in surrounding tissue(final results will take approx a week).  They are going ahead with a scalp rotation and skin graft; however, they are not going to be filling the empty cavity with flesh as previously thought.  Because they had to remove tissue right to the bone, there would be no blood supply for the tissue to connect to and be nourished by.  Cheyenne will have a depression/hollow at this sight.  When her chemo (and possibly radiation) is complete she will then have further plastics work done.  I will update gain this evening and let you alll know how the remainder of the surgery has went. 
Thanks again, Sonya, David and Cheyenne

OR is booked!

I realize I have taken awile to write this, and things could still change in the next week. 
Cheyenne is booked for surgery for September 26th at 9am.  Over the past week we have met with 4 surgeons, and some again tomorrow.  As of now, this surgery is just the removal of the tumour.  The ENT-Dr McLean will be leading the surgery.  His job is to locate the facial nerve (which is about the thickness of 2 hairs) and to NOT damage it during the removal of the tumour.  To do this they have to open up by her neck, locate the nerve and then have electrodes to monitor all her facial nerves.  If the tumour is around her nerves, they will have to remove a portion of her nerve.  The risk is that she will not be able to squint, thus not being able to protect her eye.  The other damage would be to her forehead, and not being able to wrinkle her eyebrows/forhead.  He assured me that this is minimal, think of it as free botox. 
We also have Dr Cameron, our paediatric surgeon helping with the removal.  Another paed surgeon also consulted for a second opinion but he is unable to be there for surgery. 
When they remove the tumour they also must take a percentage of good tissue surrounding the tissue.  This is everything that the tumour touches.  And i'm sorry I can't give more definates, but they wont know for sure until they are in surgery.
The entire temporalis muscle will be removed.  This is the cosy location her tumour started in.  The bone may need to be shaved or removed.  And all surrounding tissue will be removed.  The "margins" (healthy tissue that surrounds tumour that will also be removed) then have to be tested for any cancer cells.  If the tests come back negative, that would mean they got it all.  If they come back positive, it would mean it has spread, and radiation treatment would be for sure.    These results will take about a week and will help Dr Choi, the plastic surgeon, determine what his course of action will be.  IF they remove alot of the bone, they will graft in one of her ribs.  The muscle and nerve(if needed) will be harvested from her arms and legs and transplanted to her face.  To fill the 'hole' from her tumour, they will take a skin flap from her buttock and transplant to her face.  They will then cover it with skin from behind her ear (so that the skin matches).  They also have to cover the hole they left in her buttock with a skin graft from her thigh.  And they will do a scalp rotation to stretch over the place behind her ear.  THIS IS JUST A ROUGH OUTLINE, and will probably change once she has had her removal and they know more of what they are dealing with.  The reconstructive surgery will hopefully take place within 2 weeks of the removal. 
We haven't even told Cheyenne that her surgery is booked.  How do you even form into words and explain to a 4 year old that not only are we removing the 'bumpy' they are going to fix it so your face isn't disfigured.  But in the process you will be in alot of pain because they cutting and pasting the rest of your body back together.  I know that as a mother, those scars will all be beautiful and tell her story of how she is so brave and what she has been through.  The hard part is being vulnerable and letting her inner beauty radiate through, not protecting her from the gawking eyes, the whispering adults(because yes, adults are less accepting than children) and letting her have back her innocent carefree childhood.
So.....I won't be telling her because I don't know how.  Instead, her dear friend Nancy(the child life specialist) will be explaining it by demonstrating on a doll, and I'm pretty sure that I will take a walk down the hall because I can't bear listen or watch.

Please pray

• Cheyenne will be told tomorrow(thursday), please pray for acceptance and understanding for her, and strength for me.
• for her surgery on next Wednesday.  The removal alone is very complex, and will take approximately 5 hours. 
• that the cancer is not in the bone
• that Cheyenne will have good pain control

MRI and CT done

Cheyenne had her MRI completed last week and her CT today.  We will not know the results until next monday.  We are supposed to have a consult with the surgeons then (we had a little meeting today). 
I will blog a more complete update in a couple days.  For those of you who know our family, my Grandad passed away last friday and the funeral is tomorrow. 

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