Today's MRI

As many of you have already seen on Facebook, our MRI results were good today with no cancer present in Mikey's brain.  We were very relieved and happy.  It's amazing the stress we feel before these scans even though we try not to think about it and put it in the Lord's hands. 

Thank you for your many thoughts and prayers today.  There was some miscommunication with the hospital about our MRI time and then I ran into bad traffic in Denver so we almost missed our slot for the MRI.  They were just about to bump us (we would have had to wait another week), but thanks to some awesome nurses, we slipped in just in time.  I feel like Heavenly Father blessed us so that our burden could be lifted for today.

iphone pic while waiting to get the MRI.  Gotta love those hospital jammies.

Dr. Foreman, our oncologist, said that there is no need for Michael to see the multi-disciplinary clinic at this point, which is a change from earlier plans.  He didn't clarify exactly why, but said that right now, all of the things that he would need to be seen for in a multi-disciplinary clinic, he is doing alright at this point.  For example, although Michael is not putting on weight easily, he is growing in length, which means that he still producing adequate growth hormone.  We will monitor that over the next 6 months before meeting with an endocrinologist.  His shunt is working fine (neurosurgeon), and his physical and occupational therapies are going well (rehabiltiation doctor).  His eyes are being handled by our opthamologist and we will see him on Tuesday.  Unfortunately, Michael's right eye is starting to retract to the center, so the surgery has not been as successful as hoped.  We will be discussing our options with Dr. Arnold on Tuesday.  Dr. Foreman is also referring us to a plastic surgeon so we can begin finding out any options for Michael's face, such as cross-nerve grafting.  

Tonight we took the children to exotic Chick-fil-a to celebrate.  Although it sometimes seems ordinary to us, we have to remind ourselves that it is not ordinary, every day is special and we have no idea what the future holds for Michael.

As we celebrate today, we also ask that you please keep our dear friend, Hazel Sievers, in your prayers.  You may read more on their website:
https://www.mylifeline.org/hazelanne/

This is our reality with babies with cancer.  But we also know Hazel to be one of God's best.  We send our love to the Sievers family.

Catch up

So this post is just going to be a whole lot of pictures of the past month.  We are trying to land back on our feet following the holidays and a surprise pregnancy and all that comes along with having four kids and one with special needs.  So here's a glimpse at the fun:

Here's where we hung all the awesome Christmas cards we received.  We can't thank each of you enough for sending us yours!

Whitney is all smiles with her new Christmas dress on

Sarah loves her new Christmas dress too, especially when she twirls.

Sarah started a little basketball league at her school.  She did great in her first game, even scoring a shot.

We have a tradition that a "New Year's Baby" visits us on January 1st and leaves a little present for the kids.  We were at Liz's parent's home and they made it really fun for the kids.

Both girls got a new version of Fashion Plates.

Spencer got a remote control car.  You can imagine the small fortune we've already put into that thing in batteries so far this year.

Mikey got a new truck.  He is getting more bold crawling around the house and from room to room.  On the days he feels good, we can get him to take more steps. He's being fitted for new leg braces this week  to help make walking easier.   I even got him to eat strawberries this week - a huge step up from bread and cheese (and pureed fruits and veggies we force on him for nutrition).  Everyday with him is a remarkable treasure.

Spencer started his first day of "Sunbeams" at church.  He loves singing the songs, but doesn't like having to sit in a chair instead of playing with a ball like he did in the nursery.

Whitney is loving her new Primary class as well.  Her class consists of all girls this year.  Her favorite day is Sunday because she likes going to church so much.

Sarah seems to grow up more each day.  She is just about to lose those two front teeth.  We'll keep you posted!

Kids do and say the cutest things!

Our kids do and say the cutest things.  The other night we had each of the kids perform a talent.  Whitney's talent was singing one of Michael's favorite songs to him, the theme song from "Baby Signing Time".  As she sang so sweetly to him we looked over at Michael to see what his reaction would be.  He had such a content look on his face--and his fingers stuck in his ears!  It certainly wasn't a reflection of Whitney's singing abilities, just a sign of Michael's impeccable comedic timing.

Last night we showed the kids some home videos of themselves at the hospital on the day they were born.  Before we showed the videos we asked each of them where they lived before they were born, and where they were when they were born.  Here are their answers:

Where were you before you were born?

Sarah: In heaven
Whitney: In England
Spencer: In a tent

Where were you when you were born?

Sarah: In Colorado in a hospital
Whitney: In England
Spencer: With the penguins

Michael's been doing pretty well sitting up by himself.  He still struggles with balance, though, and we periodically hear a loud thud when he falls over.  But he's now strong enough to push himself back up to a sitting position.  Last week he was sitting by us while we were having family prayer and we noticed that he had his arms folded.  We'd never really taught him how to fold his arms during a prayer, but he's a smart kid and was copying what we do.  He even managed to keep them folded until about halfway through the prayer when he lost his balance and toppled over.

On a more serious note, Michael has another MRI next Thursday, January 24, to see if the tumor shows any signs of coming back.  This is another big milestone for us because, if the scan comes out clean, it means he's doing well enough that we can begin meeting with additional specialists to determine what the next steps are for improving Michael's quality of life.  For example, what hormones is he missing due to radiation damage, and what can be done to replace them?  Is there anything more that can be done to help with his facial paralysis and improve his balance/coordination?  We've had a lot of illnesses running through the family lately, with Michael having been hit especially hard, so we're praying he'll be healthy enough to go through with his MRI next week, and that the scan will be clean.

One year ago...

Tomorrow is the one-year mark from the day we walked into Children's Hospital and found out Michael had a brain tumor.  What an interesting 365 days we've had (okay, 366 because technically it was leap year).

Last year on January 1st I wrote in my journal, "Welcome 2012.  I wonder what you hold."  We were in for some incredible surprises, some the most amazing and wonderful surprises, some of the most horrible and heart renching surprises.  Here is a short year-in-review of our surprises.

On January 10th, Liz walked into Children's Hospital Colorado holding very sick Michael.  A couple hours later, a CT scan revealed a large brain tumor in the back of his brain which turned out to be brain cancer.  We lived in the hospital for the next several weeks while Liz's mom and loving neighbors and friends cared for our other children.  We met many new people in our lives, particularly in the medical field, that would become friends.  We were also showered with an unbelievable outpouring of love, prayers, and gifts on behalf of our family from loved ones and strangers alike.  We have been astounded at the goodness and generosity of so many around us.

In March, an MRI showed residual cancer in Michael's brain and another surgery was performed at the end of the month.  This surgery has had devastating consequences, causing Michael to lose the ability to move his face and eye muscles, weakness in his limbs, and difficulty with balance and coordination.  He can no longer smile, blink, cry tears, and learning to sit, crawl, stand, and walk became dreams we hope and work for each day, not knowing if they will ever be reality. 

In June, another MRI revealed cancer still growing.  One of Michael's doctors shared with us that his long-term prognosis had plummeted to poor.  Grief seemed to fill our days in abundance.

Also in June, just days before Michael's 1st birthday, a chorus of voices on our front porch turned out to be Liz's entire family who had come out of state for a surprise visit for his birthday.  In July, many of Tim's family, some of who we never dreamed would visit us in our home, also made the long trip to be with us and lift our burdens.  These were some of our happiest days and best memories ever.

Michael's birthday party in July was also far more than we could have imagined, with so many wonderful people attending, and many beautiful cakes, decorations and activities donated by friends and local businesses.  We also spent nearly all of July and part of August memorizing every inch of the road between our home and the hospital for Michael's daily radiation treatments.

In September, we did the unexpected and took the family on a Disney Cruise.  Although Michael was not well with radiation sickness, we had a wonderful time bonding as a family.  Taking a trip like this was only a far-off dream, and in this year, we made it happen.

In October, after several anxious weeks of wondering if all the treatments Michael had been through had worked, his MRI was clean.  We felt much relief knowing that we would at least have more time with Michael and we could make progress forward.  We also were relieved to think our lives could get back to some sense of "normal."

Then just two days after Michael's clean MRI in October, we had a very most unexpected surprise to discover that we are expecting our 5th child.  This might come as a surprise to many of you too.  Life didn't return to normal as we thought, but we've found a new joy in looking forward to the time when Michael can be a big brother and our family can heal through the blessing of bringing another child from heaven into our family.  We are expecting the baby to arrive at the end of June.

During the holidays many of your responded by sending your Christmas cards our way.  Our wall filled more and more each day as we received cards not only from loved ones, but from many whom we have never met but who have been following our blog or family all year.  Our hearts have been so touched.  Thank you to so many of you. 

Yes, it's been an unbelievable year, filled with some of the greatest trials of our lives and yet some of the most amazing and wonderful blessings.  Our eyes seem to fill with tears of grief and gratitude at the same time if that is even possible. 

Thank you to all of your who have gone along on the ride with us!

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.