Merry Christmas and a Happy New Year!

Whitney's hair has a mind of its own.  Whenever she sleeps her hair has a knot tying party, so when she wakes up, even from a brief little nap, her hair is truly a sight to behold!  Unfortunately she also has "bluetooth" nerve endings on her head.  That means that we don't even have to touch her head with a brush, we just have to get anywhere near it and she screams and hollers in pain.  So a few weeks ago she asked to get her hair cut a little short to make hair combing time a little more pleasant for the whole family.  Fortunately her hair turned out really cute, here's a before and after shot:

 

In spite of our best efforts to slow things down this Christmas season, things still got really busy during the holidays (as they always do!).   Fortunately Michael did remarkably well recovering from his eye surgery and didn't require nearly as much care as we anticipated.  His vision seems to have greatly improved as well.  After we got home from the surgery he would stare around the kitchen as if to say, "So THIS is what our kitchen looks like!"  He also army crawls greater distances because he can see something he wants that's further away.

We had a great time doing activities together as a family, such as making gingerbread houses and visiting the new Fort Collins Discovery Museum.  Santa was also kind enough to visit our house on Christmas Eve, so we had a great time opening presents on Christmas morning.

Making gingerbread houses

Lining up on Christmas morning by height (an old Wheeler family tradition) to go downstairs and see what Santa brought

Spencer's new bike

Santa Mikey

Opening presents

Mikey would rather eat the instructions than read them

We spent a few days after Christmas relaxing in Fort Collins and letting the kids play with their new toys.  On Saturday we drove out to Utah to spend New Years with Liz's family.  One of the highlights has been seeing all the cool Christmas lights on Temple Square in Salt Lake City.  

All bundled up

Sarah with Grandma Bellamy

In front of the Salt Lake Temple

Admiring the Nativity

Joseph, Mary, and baby Jesus

Eye Surgery

Yesterday Michael had surgery on his eyes to help straighten them so he can see more clearly.  The eyes themselves are perfectly fine, but the brain stem damage from his surgeries made it so the signals from his brain aren't reaching his eyes correctly.

We learned that Michael doesn't have double vision when his eyes are crossed.  Instead, his brain shuts off one eye completely to compensate.  It even alternates which eye it shuts off, so sometimes he looks at us through his left eye and sometimes it's his right.  By changing where the muscles are attached to his eyes, the goal was to make it require much less effort for him to keep his eyes straight and to enable him to use both eyes together.

Michael did awesome.  They gave him some Versed (happy juice) to keep him calm before they put him to sleep, and it was cute hearing him chatting it up with the doctors and nurses as they carried him down the hall to the OR. 

After he woke up from the surgery he was pretty miserable.  His eyes were very red (and will be for the next few weeks) and he had a fair amount of bloody tears leaking from his eyes.  As of this morning he seems to be doing much better and is already off of his pain medication.  His eyes are definitely much straighter now, so he should be seeing much better than he has in almost a year.  We have a follow up appointment in a week to see how well his vision is doing.

Liz's sister Julie flew out here for a few days to help us out for this surgery.  It's been great having her out here and her help has been very much appreciated!

Send us your card!

Dear Friends and Family near and far,

Do you send out a Christmas or New Year's or Holiday card?  Will you send one to us?  This Christmas it would mean so much if we could decorate our home with your faces, the many people who have carried us through this year, watched over us, helped us, thought of us, prayed for us.  The cards of many of those we love are starting to come in and my heart it full looking at the faces of so many people we love.

If you don't mail your cards 'til January or February, no problem, send them anyway!  We keep all our Christmas cards in a special binder so we can look back over the years of the dear people we love.

I won't post my address directly on here for privacy purposes (we are on Willow Creek), but you can find us in the white pages online.

Thanks everyone.  It would mean so much to us!
Love, The Wheeler's

Prep for Eye Surgery

Tim:

On Friday Michael will be going in for eye surgery.  Dr. Arnold is an excellent local pediatric ophthalmologist and will perform the surgery here in Fort Collins.  (Yea!!! We finally don't have to go down to Denver for a doctor's visit!)

Michael's brain surgeries damaged the cranial nerves that control eye movement and vision.  So even though his eyes are just fine, the signals from the brain aren't arriving correctly, so it's impossible for him to focus and keep his eyes from going cross-eyed.  The surgery will try to compensate for this by shortening some of his eye muscles so that when his eyes are in a relaxed, neutral position they are straight instead of crossed.  Our understanding is that he'll be pretty miserable for a few weeks, but hopefully this will greatly improve his vision.

Sarah reading a story to Michael

Michael actually slept through the night several times this last week, which is HUGE!  Not only does it mean mom and dad can finally get a good night's sleep, hopefully it means he's starting to feel a little better and can hold down enough food to last through the night.  Of course, after his surgery on Friday we'll probably be back at square one, but we'll enjoy it while it lasts.

Speaking of keeping down food, he's still a very picky eater and usually doesn't feel like eating much.  We've had some great well-intentioned friends ask us, "You're feeding him an organic diet, right?  Since of course everyone knows organic diets are best for fighting cancer."  We usually reply with a smile something like, "If all Michael wants to eat is circus cookies with sprinkles on them, that's what we're going to feed him!  We're just happy to get any calories in him, and his dietician fully agrees!"  Right now he mostly eats bread, yogurt, cheese, and baby jars of fruit.  Lately he seems to like grilled cheese sandwiches.  When he shakes his head at us and refuses to eat, we can often distract him by singing his favorite songs so that he'll willingly let us put food in his mouth.  This sort of diet constipates him, but it's about all he'll eat, so we've added a laxative to his daily regimen of medicine.

Michael has been wearing the same sized clothes ever since he was about five months old.  He's almost a year and a half old now.  He went from being off the charts as a very large baby, to off the charts as a very small one.  We're glad that he's finally starting to grow again and put on a little weight.  His clothes that he's worn over the last year are starting to get snug on him, so it's great he's starting to wear a size up now.

One last observation.  A few days ago, Sarah's Let's Play Music teacher told us she was thrilled that Sarah had aced her music theory test and was one of the only ones to do so.  We were completely surprised by the news.  Let's Play Music is a program that involves a lot of parent involvement.  And well, we just haven't had time to dedicate to it, so Sarah's been mostly on her own.  So to hear that she's doing so well on her own in music (as well as in school, where she's one of the top in her class) is a real tender mercy that the Lord is providing "compensatory blessings" to our family as we deal with the challenges associated with Michael's illness.

Performers

Tim:

On Tuesday Whitney performed in Liberty's annual kindergarten music program.  This year the theme was The Zoo, and she wanted to go as a baby seal.  We didn't have time to track down a seal costume, so we got a little creative:

She was really cute performing various zoo and animal related songs with the other kindergarteners.  Some of the highlights were songs like "We're Going to the Zoo", "In the Jungle the Mighty Jungle", and "The Bear Necessities".

Whitney was also one of just a few of the kindergarteners who was selected for a small speaking part and did a fabulous job.  She seems to have no fear about public speaking.  Not sure who she inherited that from, certainly not her parents!

I'm in an acapella group with some of my BYU friends who also live here in Colorado.  We've been singing together for over 10 years now, although it's mostly during Christmastime.

We were invited to sing at a church Christmas musical program in Loveland on Saturday night and picked a few of our favorite acapella arrangements of Christmas songs.  Liz and the kids came to watch our performance.  They were amazed that everyone clapped and cheered so loudly for us.  They thought their dad was some sort of celebrity!  We made some fun changes to our music as well.  Our last song was "We Wish You a Merry Christmas", and instead of singing, "Now bring us some figgy pudding" we sang "Now bring us some Christmas cookies" and kept gesturing towards the back where the refreshments were going to be served.  After the song was over while the crowd was cheering, someone from the back of the audience grabbed the plate of Christmas cookies and brought it to us.  We normally sing for free, but we were well compensated last night!

Here's our group after a performance last year

We've never been able to settle on a name for our acapella group.  It's mostly because we have so much fun picking silly names we can't settle on anything serious or something we'd be willing to live with long term.  At last night's concert they insisted that each performing group have a name.  We decided there's no reason we can't pick a different name for each occasion, so we went by "The Knights Before Christmas".  We have another performance on Thursday, so we'll see if that name sticks for a while or if we decide to change it again.

Thanksgiving

It's been an exhausting last few weeks!  Michael hasn't been feeling well, so he's been crying and needing to be held most of the day and up a lot at night.  We aren't sure if it's radiation sickness, a cold, or something else.  He's playing catch up on his immunizations, so he received several shots a few weeks ago.  It's possible that with his weak immune system it's just taking him a lot longer to bounce back.  On top of that Liz has been very sick, so lately we've been trying to keep things pretty low key.

Fortunately on Thanksgiving Day Michael and Liz had improved significantly, so we enjoyed a nice, relaxing day.  The weather was beautiful so we went for a short hike in a nature area near our home.  The kids absolutely loved gathering sticks and rocks and throwing them in what's left of the river.

At the trailhead

Crossing an old rickety bridge

Adventurous hikers Sarah and Whitney

Not much left of the river this time of year, so the kids had fun walking in the river bed

The Blanchards invited us to their home Thursday afternoon for a terrific Thanksgiving dinner.  They have been so kind and supportive of our family over the years, and even more so this year as we've been dealing with Michael's illness.  They are wonderful friends.

By Thursday evening we were all so exhausted that we tucked our kids into bed and then crawled into bed ourselves!  All of our lights were out by 8:30pm!  Maybe having a huge turkey dinner in the early afternoon shifted our body clocks back a few hours.  But being up with Michael multiple times each night for most of his life might have something to do with it as well... :-)

Today we offered our kids the choice of visiting the new children's museum in town or decorating our house for Christmas.  Any guesses which one they chose?

Sleeping like angels by the Christmas tree.

This evening we placed some gifts under the tree from Grandma Wheeler and let the kids open them.  The gifts were all Christ-centered and really helped us get a good start to the Christmas season.  We let the three older kids sleep by the lighted Christmas tree as long as they agreed to go right to sleep.  We thought for sure they'd be back in their own beds in no time, but to our amazement, we never heard a peep from them.

This Thanksgiving season we feel we have so much to be grateful for.  We're so grateful Michael is still with us, that we don't have daily trips to Children's Hospital in Denver anymore, and for incredibly supportive family and friends that have helped us get through all of this.  And of course for our Savior, who has been by our side every step of the way.  Last Thanksgiving we were in Utah with Liz's family.  That was right before Michael's health started taking a turn for the worst.  Little did we know what lay in store for us at that time, and little do we know where we will be a year from now.  But we're grateful for the opportunity to be on this incredible journey called life, and that for all the terrible things there are in this world, there is so much joy and goodness to be found as well.

Sarah's Seventh Celebration

On Thursday Sarah celebrated her 7th birthday!  The day started with mom and dad coming into her room singing Happy Birthday as is our tradition for waking up the birthday child.  As is also tradition, the birthday child is wide awake long before we get to their room... :-)  Sarah picked cinnamon rolls and sausage for her birthday breakfast and ate them on our special birthday dishes.  She opened her presents and got to play with them for a few minutes while I did her chores.  She didn't get much of a chance to play, though, before she had to rush off to school.

At school the principal wished Sarah a happy birthday during the morning announcements.   Mom took Sarah out of school at lunchtime to go to lunch at Wendy's.  After school we got a babysitter for the three younger children so that we could take Sarah on a special birthday date.  We were going to take her to Fort Fun for miniature golfing, but when we got there it was closed!  That's the trouble with having a birthday on a school day.  So we took her bowling instead, and she must have had some birthday luck with her that day.  Not only did she get the first strike, she took first place in our last game!

She picked macaroni and cheese for her birthday dinner (I remember doing that as a kid).  To top it off she had cupcakes for her birthday cake and dessert.  Some of her friends came by that evening with a singing telegram to wish her a happy birthday.  She had family members call and sing happy birthday to her on the phone.  What a great day!

Here's a poem the kids memorized at school that sums up the day nicely:

Everything's been different
All the day long,
Lovely things have happened,
Nothing has gone wrong.

Nobody has scolded me,
Everyone has smiled.
Isn't it delicious
To be a birthday child?

From "The Birthday Child" by Rose Fyleman

MediPort Removal

Earlier this year, as Michael recovered from his brain surgeries, we celebrated each time one of his countless tubes and other medical device was removed.  On Monday we had another such celebration; his Medi-Port was finally removed!  It was implanted just under the skin in his chest and provided a quick and convenient way to hook him up to an IV without having to look for a suitable vein.  His port was used for everything from routine blood draws to chemotherapy treatments to putting him to sleep for radiation and surgeries.  The only implant he has now is his shunt, which is permanent.  Hooray for his continued progress and healing!

Mommy and Michael, just before his Medi-Port removal surgery

This last week was Halloween, and boy, was it ever scary this year for our kids.  I mean, just look at the terrified looks on their faces:

Of course, we were actually trying to get our kids to smile for a picture in their Halloween costumes.  I can only imagine how they would have looked had we been trying to scare them.  But one of the pictures we took actually did turn out okay:

Trick or treating at daddy's work

The kids had a ball carving pumpkins that they grew themselves this year.  Pumpkins are easy to grow and make your garden look really big, so that's the only thing we planted this year.

Liberty, the school Sarah and Whitney attend, doesn't really have a Halloween celebration.  They have more of a learning based celebration around the same time as Halloween so the kids can still have a fun dress up event at school.  This year Sarah was studying about Egypt so she dressed as an Egyptian, and Whitney dressed as Little Miss Muffet.

 The kids had a ball helping to rake leaves yesterday.  Of course the best part about raking leaves is jumping in them...

on the ground...

...and in the compost bin!

Going off daylight savings time always throws a lot of people off.  In fact this morning Whitney asked me, "Dad, I thought you were going to set the clocks backwards last night."  I responded, "What do you mean?  I did set the clocks back last night."  To which she replied, "Then how come the time is still going forwards?"  Whitney is so hilarious!

On a more serious note, today in Sunday School we were studying in the Book of Mormon about Christ's visit to the Americas after his death and resurrection.  We watched a short video portraying the part where he healed all that were sick or afflicted in any manner, and where he asked that all the little children be brought until him.  The video is well done and very moving, but with all we've been through this year it was also a bit hard to watch.  Sometimes we wish so badly that Michael could be healed, just like so many others Christ healed in his ministry.  When we're having one of our down days we sometimes wonder if God was even paying attention when Michael's cancer started to grow, or during his surgery when his smile was taken away.  But towards the end of the video as it showed Christ interacting with the little children, I was impressed by the incredible amount of love he had for those children.  Then it hit me how much love he has for our little Michael.  He has been there with us every step of the way and always will be.  And even though it breaks our heart sometimes to see all that Michael has to endure, we are never alone in our love and concern for him.  And someday, even if it isn't in this life, Michael will be completely healed.

Best Pals

As much as our kids thrive on annoying each other to no end, it's payback for parents when we see our kids actually managing to be friends with each other.  Here are a few times we caught them in the act.

 

Whitney and Spencer are like two peas in a pod.

They are often inseparable when they play together.

Perhaps we should separate them more often. Spencer is still very impressionable. :-)

I took Sarah and Whitney miniature golfing for the first time a week ago for filling up their marble jar (for doing their chores and other good behavior).  They loved the princess castle and were absolutely fascinated how you could hit a ball into one hole and it would come rolling out of a chute somewhere else.

Intel hosted a family activity at a local corn maze.  There were so many great activities there we never made it into the actual corn maze itself.

One of their favorite activities is playing in these huge wagons filled with corn.

Michael trying to keep warm with his favorite mom in the whole world

MRI results

This morning we made the all-too familiar trek down to Children's Hospital for Michael's MRI.  We've been anticipating this trip for almost a year now, anxious to see whether all of the surgeries, chemotherapy, and radiation treatments even made a difference in eliminating Michael's brain cancer.  We were so nervous going down there, since every MRI Michael has had in the past has brought bad news.  But this time the scan was clean!  No evidence of cancer!  YAHOOOOOOOOO!!!!!!!!!!!!!

So what does this mean?  Does it mean his cancer is now in remission?  Well, not really, no.  Michael's type of cancer doesn't go into remission.  It's either completely gone, or it's just so small it doesn't show up on a scan.  Michael will have MRIs every 3 months for the next couple of years (and less frequently after that) to monitor whether the cancer is completely gone or if he'll need more treatments in the future.  So although Michael's future is still uncertain, this is a huge milestone and it's definitely a time for celebration!

So what's coming up for Michael in the next three months?  First of all, he'll have surgery next week to have his port removed.  Since he doesn't need his port any more for chemo and radiation, it's better to have it removed.  It's a simple outpatient procedure.

Next, he'll likely have surgery on his eyes.  The damage to his brainstem has caused his eyes to be crossed, which affects his vision.  Since the brainstem can't be repaired, Michael's ophthalmologist will do the next best thing by tightening some of the muscles in his eyes to bring them more in line.

Lastly, we'll get Michael caught up on all his immunizations.  His immune system has been so badly out of whack that he's missed all of his immunizations this year.  It will take another year or so for his immune system to normalize completely, but it's stable enough we can get him caught up.

We're so grateful for all the prayers offered in our behalf this week and for those who helped us make it through the day today by watching our kids and providing meals, love, and support.

Here are a few pictures from our big day today:

We'll all smiles after hearing the good news about Michael's MRI!

Our friends the Staceys recently moved to Denver and helped us out today.  Michael got really attached to their dog, Angel.

We came home from Denver to find our house had been "heart attacked"!

Daddy and Michael after our big day.

Mommy and Michael are thrilled with the good news!

Scanxiety and other hard things

It's been a tough week.  I haven't written on the blog for fear that the minute I start typing the tears will start to fall.  It's like when I open my mouth to try and make a thoughtful comment at church and just a big blubbery mess falls out.  Goodness, what an embarrassing wreck I am sometimes and I don't even realize it until it's too late.

We've been feeling the nervous apprehension that comes before a brain scan, the feeling of not knowing what to expect, wondering if our lives are about to be dumped upside down again or hoping we might get a free ride for another 3 months. 

On a brighter note, Michael is getting stronger a little more everyday and has longer periods of the day where he feels well.  His appetite has even picked up and he's finding he likes Wheat Thins quite a lot, one more thing to add to his limited palate.  And there are moments when - shock - everyone is content and happy and we almost feel like a normal family!

The kids are getting into the spirit of the season and left little surprise Halloween treats at friend's doors.  Well, except I totally messed up and we left one of them at the wrong house, so some special person in Fort Collins got our treats and has no idea how they ended up on their door.  I'm finding that working on the kid's costumes for their school celebrations has been therapeutic to take my mind off of the stress of things.

And the sky turned a brilliant orange the other night.

These are the simple things I try to hang onto to get through the hard things.

Fall

The simplest of things make my kids happy.  I love fall for it's beauty and sweater-weather. 

It's the simple things in life that make all the difference, isn't it?