Celebrating 10 years!!! Surgery date April 30, 1999

SURGERY April 30, 1999

Complete Resection of Craniopharyngioma

After searching hi and lo for a certain scrapbook...I came up blank. I know exactly what scrapbook and what box. But, alas, we have moved numerous times since then and it is at the moment buried.  So this picture was sent to me by my mom.  She advised us to take pictures during the whole surgery ordeal, she said that one day Emily would be interested to see and read about her surgery.  The day is here, Emily has been asking and luckily we did take a picture. Actually only 3 were taken in the hospital. It was a tough ordeal and Mike didnt care to remember it.  So we only took 3...and I will continue searching for that scrapbook. Until then, this picture was taken a few weeks after her surgery.  

Surgery day was the hardest day of my life.  We had the sweetest aenesthesiologist who has since retired. He realized the delicacy of the situation and sat me in a rocking chair and passed me Emily.  He allowed me to rock her gently as he put her to sleep and then gave me a few moments with her before he took her from my arms.  We then waited.  Emily had received a beautiful blessing the night before her surgery and we were optimistic that things would go well.  We waited in a small waiting room off the Icu area.  We were told the surgery would be close to 8 hours. Kristin and I occupied our minds by playing game after game of yahtzee (thanks Ola).  After just 5 hours, our surgeon, Dr. Hamilton emerged.  We were shocked to see him so soon but this turned out to be smashing news!  The tumor had begun to invade a few areas of Emily's brain.  The optic nerves, the hypothalamus and of course the pituitary gland. Dr. Hamilton was concerned prior to surgery that the tumor was adhered to the hypothalamus and would not go near the hypothalamus to remove any tumor cells as this would cause irreversible damage for Emily.  However, Dr. Hamilton went in and was able to deflate (drain) the tumor and as he did so...it fell away from all the structures we were concerned about. It fell right off the optic nerves and right away from the hypothalamus.  The pituitary gland was a loss, but we pretty much knew that and were prepared for that. The tumor grew right along with the pituitary gland during development and there was no way to separate the two structures.  This was not unexpected news and we were prepared for it.  We were thrilled when Dr. Hamilton told us that he was able to cauterize the remaining cells of the tumor and that he was able to perform a complete resection of the tumor (meaning he got every last darn cell!!) The surgery could not have gone better and I attribute this not only to the skill and care of the surgeon but also to the many prayers offered on Emily's behalf.

The surgery was done...but we still had to face recovery.  This was BRUTAL!  I cant even go into detail...just know it was torture. I was with Emily at every moment of her recovery and because she couldnt speak it was so so difficult to know what she needed. She did not sleep because she was on a high dose of steroid.  Her face swoll so large that on day 3 her eyes were swollen right shut and they would just cry these huge tears. The doctors were testing her for something called diabetes insipidus so they were only allowing her to take in so much liquid at a time and the poor thing was starving. We eventually began sneaking her liquid because we couldnt take it anymore (turns out she did not develop this condition).   It was exactly 3 weeks before she gave us her first smile post-op.  That was a great moment and I remember it well...it was then that I knew we would all get through this and be alright! Over the next few weeks and months we realized another miracle had occured. Emily could see again. We weren't sure as to what she was seeing or how well.  We were just thrilled she could see. Our opthamologist had warned us that the optic nerves were not forgiving and once moved, rarely did they regain function. We tried patching one eye to see if it was just being lazy...but it wasnt being lazy. It did not see so this drove Emily CRAZY (duh) and patching did not last long.  She could see and we took that as a miracle and to see with 1 eye is sooooo much better than none! We made it through diagnosis, we made it through surgery, we made it through recovery, we learned how to manage Emily's medicines, Mike passed his medical boards just 2 weeks after her surgery, he then graduated Medical School (where he received special mention and a standing ovation), we found out baby # 2 was coming,  we celebrated Emily's 1st Birthday and Mike began his surgical residency! Crazy crazy time for us!

We continue to manage Emily's health conditions. This is truly an amazing thing for us.  She does so well on her growth hormone and her other medications. The amounts change frequently with her growth and it definately isnt a perfect science.  Overall, she can be managed easily with a few ups and downs.  She is still being monitored for any re-occurance of the tumor.  Unfortunately these tumors, tho benign, tend to re-occur even with a complete resection.  So we now have graduated to a yearly MRI to check for anything and so far nothing!  We are now 10 years out and feel more confident with each passing year that we have seen the last of that tumor! Emily is truly a blessed little girl!!

Spur of the moment trip to VANCOUVER!!!

Vancouver April 2009!!!

My girls had spring break last week. Mike had to work so we were planning to have a STAYCATION and find some things to do around town.  However, at the very last second we accepted an invitation to visit the Dahl's in Vancouver!  We decided, packed up and were in Vancouver less than 24 hours after we decided to go!  The girls were sooooooooo excited to go and see cousins and PLAY PLAY PLAY!  They were great helpers as we got ready to go.  The weather was so nice in Vancouver!  The sun was shining so we headed to the lake for some swimming! Well the water was FRIGID..but some of the kids didnt care and headed on in.  We all had to work hard to keep James out of the water because he was bound and determined to get in and play.

James escaping to the cold lake!

One of the activities of the week was the Vancouver Aquarium.  The kids all loved this. It started with a really cute Dolphin show which James LOVED!  We also saw a Beluga whale show, A Sea Otter show, and a bird show (also a hit with James as it is one of his few words 'B').  We loved the sharks and the jelly fish. They had all kinds of creatures beautiful and strange.  It was such a fun afternoon and in the sun too!

These kids LOVE to swim. So of course we had to have an afternoon of swimming!  They swam and swam and swam. They loved the high dive board and the wave pool & slide! They had strict photography rules in the pool so I couldnt get many photos...but it was such a fun pool and all the kids had a ball!

While we were there all the trees went into full blossom!  These trees were stunning and we all enjoyed finding them!  They looked like fluffy puffs of clouds everywhere we went. I didnt get great pictures of them..but the trees were so stunning I had to include what I could get.

We loved walking around in the sunshine and eating Italian Gelatos! Delicious!  I cant speak for the other flavors...but I enjoyed Coconut Cream!! Oh it was good....wish I could get another!!

The little girls chose Marshmallow Smurf...light blue in color! They said it was YUMMO!!

We also walked around down by the port. The kids loved to play on the fun ship park!  As the sun was descending it got a little chilly.  We walked out to the pier and ran into cousin Katie with her cute friends. I think she thought we were spying on her and taking pictures....but we soooo were not!  It was total COINCIDENCE!!! She is so cute! (PS if you look closely in this picture you can see Katie and her friends way down at the end of the pier...we had NO idea!!

We had to quickly snap a photo...it was so cold and windy the further out we went on the pier. We were feeling really sorry for the bride getting pictures...she looked FROZEN!

We had a FUN FUN getaway!  Mary and her family are so fun to visit! The kids played from sun up to sun down!  They hated to leave...but alas more parties are in store this weekend!  A huge HUGE  HUGE thank you to all the Dahl's for letting us bunk in and take over their house! Thank you for all the delicious meals and treats!! We felt truly spoiled!! Mary kept telling her friends that her sister in law and her 4 kids were in town visiting and every time she said it I had to gasp..that is a lot of kids and to have all of us invade your house is truly generous! Thank you for the fun fun spring break!

Blogger note: this was my first attempt at a Collage...I think it is too small...Ill have to work on that!

10 Year Anniversary

Columbine 10 Years

Ive been pondering a lot today about this anniversary.  I remember it so clearly.  As the tragedy was unfolding in Columbine we had our own tragedy unfolding in our lives.  It has been 10 years today that we found out Emily was seriously ill.  Today we met with Dr. Astle our pediatric opthamologist.  We met with him exactly 10 years ago today with our 10 month old daughter.  He delivered the news to us that day that Emily was blind and something was wrong along her optic nerves and that he highly suspected a tumor of some sort. We were devastated and returned home awaiting an MRI the next day to see what exactly the problem was. I remember watching the situation unfold on TV in Columbine and crying tears for those students and for Emily. I remember holding Emily and looking at her tiny little head and wondering how something so terrible could be going on underneath the surface.  I couldnt believe it and I remember wanting to take her and just run from it all.  It was a terrible day in my memory and I remember it acutely...and it has been 10 years!  Ive been thinking all day about the whole experience we had with Emily. She has many questions about how we knew she had a tumor and what the surgery was like.  It has been interesting to recall those memories and share them with her. I even downloaded today the one CD that would calm her thru all of this....Andre Bocelli.  To this day, Mike cannot even listen to the CD.  I can because Emily's story has a happy ending. She is perfect. She does everything any little 10 year old girl can do.  She loves life. She loves to laugh. She does not dwell in self pity at the doctors appointments and medications she has to endure. She simply does it and understands it is part of her story.  Today the girls said that maybe Heavenly Father gave her the tumor because he doesnt like her....I quickly corrected that thought and said Heavenly Father sent us here to be tested, we all will have different tests, and this happens to be one of Emily's tests....when we pass our tests we can return to Heavenly Father with our heads held high. We then talked about different tests that we might be given and how we might endure them. I was sure to point out (tho so easy to forget) that we will not be given challenges we are not strong enough for. Heavenly Father knew Emily was strong enough and brave enough and could overcome this challenge in her life.  It was such an uplifting moment with my girls! I love each one of them. I love Emily and the challenges she faces. I love that her story has a happy ending.

We also booked a new surgery today. After much deliberation and debate over the last 10 years we have decided to fix Emily's eye.  Her eye waivers and does not follow her good eye.  We have decided it is time to fix it. So May 28 is the day!  They will pull her muscles around her eye tighter so that it will be able to follow her good eye more closely.

And on a lighter note....the girls also asked today 

WHAT CAUSES A TUMOR??

I said...well if you come up with the answer to that..you will be a billionaire.  Stephanie says, "Ok come on guys...let's all figure it out! Let's put our thinking caps on so we can be billionaires!  So that is the latest money making scheme around here. Forget chores..they are going for the big bucks!!

BRACES!!!!

Emily had a FUN day today! We decided to see as many doctors as we could in one day! We started at Endocrine and got a fresh supply of growth hormone.  We get 3 months at a time and I happened to look at the price tag today...4,755.00! WOW! So glad that is covered by the Alberta Government. It is pricey to grow this girl!  Next we went to her Vision clinic to do a visual field exam. The results were the same as last time and she does have a bit of a deficit in her visual field in her good eye...but not much..so we are thankful!  THEN the most exciting stop of our day...the ORTHODONTIST!!  Emily said goodbye to nice smooth teeth and hello BRACES!!  Here she is before her appointment....

And AFTER...notice she is still smiling. In a few hours the pain will set in tho.  She was so good and brave as it takes quite awhile to get these things put on.  She signed a waver to brush and floss and eat only things on the allowable list. She has promised not to eat popcorn, licorice, pencils, hard candy, ice, nuts, gummy candy, apples, carrots, and GUM!  We are posting the list on the fridge as a reminder for us all!  She got the COOLEST new TOOTHBRUSH!! It has a timer that goes on the mirror. She is to brush for 4 minutes and it tells her what area of her mouth she should be focusing on. It also tells her if she is pressing too hard! At the end it gives you a smily face for doing a good job!  The other girls are going to want one to...Emily was so excited about it. She can also earn 'Duncan Dollars'. She can earn up to 3 Duncan Dollars per visit if she is 1. On time 2. Brushes well 3. Has no broken pieces.  Then she can use her Duncan Dollars to buy things in the Duncan Store.  I had the same Orthodontist a million years ago and I DO NOT remember getting an awesome toothbrush and Duncan Dollars! She is soooooo lucky!!!  Cant wait to see the new smile when we are done!!

North Shore

After the wedding we all piled in our vans and headed up to the North Shore to the Turtle Bay Resort.

We opened up our window and had a nice view of a building and first thing the next morning we switched rooms. We needed more room to sleep all the kids and we definately needed a better view. It worked out great. We had 3 couches and could have cousin sleep overs in our room.

The kids loved the pools here too. This is a funny picture of Paige after putting on the sunscreen stick. The kids were really great about sunscreen and loved the stick.  

They had a fun baby pool that the girls liked to take James in.

One night we went for a delicious dinner at the golf course and James just wanted to run! He ran and ran and ran and played with cousin Alex!

Alex taught him to say the word Bird (B) on the trip. He was always looking for B's and pointing! So cute...thanks Alex!

We tested out some fun beaches while on the north shore!

This beach is not on the north shore...but somehow we ended up here for the day!  Notice the warnings!! LOL!

The waves were huge and Ive never seen so many ppl in the ocean in one place at one time! I dont know how they did not crash into each other!  We almost lost Alex at this beach! He was having so much fun in the waves but at one point was in a panic. Luckily, the uncles noticed quickly and were on him in a flash!

We did get a special treat as we watched whales swim by!

This was at Waimea Bay...the same warnings were posted here. The lifeguards were hilarious and would warn of incoming shore break swells and would keep coming over the intercom wondering if anyone needed directions to a safer beach.  I wonder if they were speaking to us?? LOL.

I think we were all mesmerized watching these incredible waves crashing...it was hard to get a picture of them.

Luckily James was fine to hang out in his stroller!

One day the waves were calm enough here that we could actually take the kids in...if we were in the safer right side of the bay. It was so fun to be rolled around by the waves!  I just wish we had had more safer days.

The family had a picture taken on the beach and we were missing James. He was peeking out watching us all...oh he cracks me up!  Here he is waving at us!

Here is the picture he was not in!! LOL!  

So I think that is the end of our Hawaii trip! We had a blast with so many fun memories! We enjoyed great food, delicious treats, great company, way too many cokes, loved the sunshine, loved the beauty of the area, we laughed and laughed, we ate and ate, we played and played!  It was so fun to have all the kids together and I don't think they will want to vacation without cousins along ever again! They loved bouncing from 'house to house' they called it. A non-stop party!!  Thanks for a great vacation Dunham's!!

Polynesian Culture Center

One day the girls and I went to the Polynesian Culture Center. They were so excited! I loved having a day with just them and not having to worry about James. The center has each different island that you can visit and learn about. We made it to most of the islands. They had informative demonstrations that taught about the people and cultures of each island.

We passed by this fishing area and the girls were soooo excited to fish (I was not so excited...I dont like fish). So we gave it a whirl...and luckily...no fish were caught. They did have fun trying tho.

Paige trying to catch fish.

Plumeria's are my FAVORITE Hawaiian flower. They are so pretty. They were in full bloom when we were there in October and just starting to come into bloom this trip. There were not many out yet...but I did find a few! I love this picture!

The island of Tahiti. 

Hibiscus. These were all over the place in all different colors.  There was a path of them at our first hotel..in bright yellow. When I walked by first thing in the morning (5am) they were all closed tightly...but as soon as the sun is out...they open up so wide!  We loved looking at all the flowers!

Shave Ice is a huge treat in Hawaii (Mike says they must not have slurpees).  We loved trying different flavors and mixes! What a yummy treat!  I think they should have them in the hospitals for recovering surgical patients to enjoy ;).

Steff and Emily enjoying their shave ices.

The culture center is so beautiful and green with waterfalls everywhere.  We watched an Imax show about the dying coral reefs around the world. The girls loved it and now want to find ways to save the coral reefs.  Im wondering how to do it from our wintery home in Calgary...LOL.

Paige was testing out her hips to do the hula at the Luau that night.

Off to the Luau...

These smoothies were served in pineapples and the girls were so excited!

At the end of the Luau the girls were invited up to hula on stage with the dancers. They had a great time!

We are off to the night show. It was a great show...but a little long so we left a little bit early to beat the crowds. The girls were tired after a full fun day of learning!!  Im so glad we were able to go!