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!