Valentine's Day

A few people, including my OBGYN, have asked if I am concerned about the new baby developing brain cancer and if I am doing anything to prevent it.  This has been a good opportunity to explain and clarify a few things about Michael's cancer. 

First, the kind of cancer that he has is not something that could have been prevented.  It was not caused by anything that I did or didn't do in pregnancy, anything I've been exposed to or he was exposed to.  Second, it was not caused by genetic issues.  My kids do not have a higher risk of developing this kind of cancer than any other child. 

This kind of brain cancer that Michael has, as far as all the research has said, is purely a statistical anomaly.  As our doctor put it, "Each of us grows a brain, and there is always a certain percentage that something goes wrong."  Brain cancer like Michael's is not increasing within a population (yes, other cancers are, but not this one) but instead holds steady across any given population.  If there is any increase, it would very minimal and be due to better healthcare, such as in 3rd world countries with better doctors and advanced imaging equipment being able to detect it.  Before such equipment is a available, a child with brain cancer like Michael's is probably thought to die from some sort of intestinal disease because of the incessant vomiting (which we know is caused by pressure in the head, not by a stomach issue).

So no, I am not doing anything special for the new baby nor am I expecting brain cancer to happen again in our family.   But saying that, I will admit that there is a certain amount of anxiety that accompanies this pregnancy.  I'm sure every parent that has a child born with special needs or goes through what we have would have similar anxieties and worries that everything will be alright this time around.
 
Valentine's Day becomes so much fun as the kids grow older.  Everyone seems to get into it more and more.

This year we did a couple of fun things the kids loved.  Tim and I teamed up and made pink blueberry pancakes and trimmed them into heart shapes for breakfast.  Tim also picked up strawberry Hershey's syrup for their milk.  A friend gave us fun valentine plates and table cloth. 

 For dinner we made Fondue (reminiscent of the 18 months I lived in Switzerland as a missionary.  Just the smell of the cheese just makes me feel happy) and finished with a heart shaped jello cake topped with whipped cream and strawberries.

The weather has been so mild this year in Fort Collins.  This week the kids asked to take the easel outside to be inspired by nature for some painting.

And the kids couldn't resist turning the basketball hoop into a horse and riding it around the house.  The crazy/fun things that kids do!

Sarah had her 1st Grade concert at school and got to dress like a blue bug.  She was a ball to watch because she loved every minute of performing her show.  Whitney and Spencer have been dressing up like bugs since her show; there's nothing like whatever an older sibling does the younger ones think it's super cool.

What are little boys and girls made of?

This morning we had an ultrasound for the new little one joining our family. 

When Sarah came home from school this is what we had waiting for her:

She had a great time figuring out from the clues that we are having a little girl.

Spencer is the one who has been on the money from the beginning.  He's always insisted that he had a baby in his tummy too and it was a girl.  Of any of my kids, I would have gone with his pick.  He's always had a remarkable connection between heaven and earth.

In the meantime, Michael got a walker.

We've got to help him with it quite a bit, but it's a fun place to start. 

He was getting a little annoyed and tired by the end.  Who would have thought that seniors and toddlers alike would appreciate the invention of tennis balls.

For Family Home Evening, we made hearts with little notes to each other hung them around the kitchen:

There might be times it seems there is a lot of yelling and screaming and crying around here, but we also have a lot of love in this family.  And one more little girl gets to join us.

Watch me walk

We've had a couple of good days (and a couple of bad ones mixed in, but I'll start with the good ones).

We met with Dr. Arnold for Michael's eyes and he said that his eyes are "excellent" under the circumstances.   He explained it with an analogy he's used many times:  for most people, holding our eyes center isn't something we even have to think about, our brain just does it.  For Michael -  after his second brain surgery - it's like asking him to carry a 35 pound backpack, an impossibility for a baby.  The eye surgery couldn't take the backpack off, but it could make the backpack a 2 pound backpack instead of 35, something that he can do.  Hence after the surgery his eyes are so much better.  But when Michael is sick or tired or just doesn't want to carry that 2 pound backpack, his eyes (particularly his right) will drift in a bit.  That's normal. His vision is great under the circumstances - he can see distances and detail so much better.  And we will be following those eyes closely to see if anything else can be done in the future to help.

He's army crawling around the house and has a huge fascination for going up and down stairs (which we have to help him with, of course).  Since his eyes have improved, he's throwing a fit if he sees someone eating something that he's not eating.  I can't tell you how happy it makes me to see him throw a fit over something like that!

 Also, he got new "magic boots" or leg braces (called AFO's for ankle foot orthosis).  These ones are red instead of blue with bears on them and hinge at the ankle so they feel more natural to walk in.  No more feeling like he was trying to walk in ski-boots with the old ones.  We call them "magic boots" because what he is capable of doing physically is astounding when he has them on.  Since putting his new ones on, he has been lifting up his legs and walking!  It's been amazing.

For some reason he thinks Honey Nut Cheerios are the best treat during his therapy sessions.

Here I go!

Now I'm steppin' with style.

We have funny exchanges with people in public sometimes:

Nice lady:  "Oh, that little guy of yours looks SOOO tired!  I had two kids of my own and I know that look when their eyes and face droop and they just want to nod off."
Us:  "Actually, he looks like this all of the time."
Nice lady:  ".....!"
(we usually explain why)

We haven't been sure if Michael will ever be able to walk on his own and still aren't sure.  But while waiting for our eye doctor appointment, Michael wanted to walk around the waiting room even without his "magic boots" on.  While taking him around I was just about in tears watching this amazing miracle happen, when a nice elderly couple said, "Are you sure you want him to learn to walk so young??"  I replied, "Well, he's almost 19 months old and has had brain cancer for the past year.  Watching him pick up his legs and try to walk today is truly a miracle for this kid." 

Later a new tech took us back to the exam room for Michael's eye appointment.  She wrote down my concerns and then got out a light to check his eyes - I thought to check for range of motion.  But after several seconds she says:
Tech:  "Buddy, come on, aren't you going to blink at this light?"
Me:  "He actually can't blink"
Tech:  "What?!  What do you mean he can't blink?" (waving the light in his eyes)
Me:  "He can't blink.  He can't use his facial muscles and can't blink or smile" (what I wanted to say was "Stop!  You are hurting him!  Put that thing away!")
Tech:  (she quickly puts away the light and leaves the room)

Tim and another mom are watching Sarah's basketball game, while Michael and the other little baby are both practicing standing and interacting with each other.  The other baby was probably 5 or 6 months old.
Mom (to her little baby):  "Look, you have a friend!  What a cute little baby."  (to Tim) "How old is he?"
Tim:  "18 months"
Mom:  (gets an alarmed look on her face and quickly moves away before Tim can explain)

It gives me and Tim a good chuckle when things like this happen. 

Other more "normal" random things going on around here:

A few nights ago a horrible burning smell started coming from our dishwasher.  It took a couple more nights of running it and our house being filled with nasty smoke to discover that the wiring was melting inside of it!!  We are so lucky it didn't catch fire (found out that it's been a problem with our model!).  So we got the awesomeness of buying a new dishwasher although we won't have it up and running for at least another week.  It's been a great opportunity to teach the kids how to hand-wash dishes, a lost skill if you ask me.

Spencer has a totally horrible infected toe.  He's on anti-biotics now and we get to wrap that baby up twice a day.  He's had to be a pretty brave kid for awhile and we will find out in two weeks if he'll need some more minor work on it.  (last year it was healing those darn scabs on his face, this year it's the toe).  He spends his days riding his green bike around and around and around the house.

He also thinks he has to insert his play keys into his bike so it will go

Whitney has already decided her Valentine this year will be dad.  She made him a big fancy Valentine and gave it to him last week.  She's also counting down the days to her half-birthday.  For some reason, this is a super big deal to a 5-year-old.  It probably helps Tim in her book that they share the same half-birthday.  She's been struggling with fatigue and concentration issues for quite sometime.  After wondering if she was just becoming lazy, we are now looking into medical causes and have a couple of strategies in place we are giving a try.

Sarah thinks she's got a half-crush on a boy and made him a very fancy Valentine the other day too.  She wanted to give it to him in secret, but realized she couldn't, so she just gave it to him.  Thankfully, he was pleased, so the world is still turning for her.

We also are cracking down on routines, responsibilities, and asking the kids to step up around here.  We've had way too much whining, screaming, and fit-throwing when we ask them to do the simplest of things and we are far overdue for some changes around here.  Tim and I are crossing our fingers that our new charts and rewards will work for a long season instead of a brief one.

Tim still remains the ever popular parent around here.

Just TWO days and we discover if we're having a boy or a girl.  Stay tuned...

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