Slogging Through

Life is getting busier the farther we move into May.  It seems there is barely enough time to get done the essentials of the day and even then, many of them are falling to the wayside.  But we are continuously buoyed up through a higher power that keeps us going.

Michael continues to carry his heavy load slogging through chemo treatments.  Dr. Foreman visits us now with a very guarded expression and dialogue, a strong hint that he is pretty concerned with Michael's progress right now.  He would like us to move back the next dose of chemotherapy treatments by a couple of days, hoping to slow down the constant battle of vomiting, weakness, and the lack of progress with the healing of his facial paralysis.  If Mikey could just have a bit more color in his face and a bit more smile, I think he wouldn't be so concerned.  This week will be very busy with 4 visits to Denver for chemo and follow-up.

However, Pam, his physical therapist who he has such a special relationship with, has been pleased with his small but extraordinary accomplishments this week, such as sitting alone for 15 seconds.  He works a lot on his big red ball to strengthen his body.

We paid another visit to Dr. Arnold, the eye doc, who said we'll hold off on patching his eye.  Michael is switching between eyes at the moment and at times uses both eyes, even though his vision is very limited because of how crossed they are.

I've been doing research on things like Moebius Syndrome and surgical nerve repair to prepare myself in case Michael's face never returns.  It's stinging to think about at times, but armed with information makes me feel better.

I ran across this line the other day while reading the Little House on the Prairie series and could relate. 

 "What needs to be done, is best done cheerfully." 

 I could use an infusion of cheerfulness in the chaos of it all.

And here's are a few more things we caught on camera this week.

I love the "halo" effect with Mikey's hair and light.  He seriously has the craziest hair. I love it.

The trio having a little book party under the trampoline

Whitney practicing getting air

Spencer gets the tongue action going when he gets serious

Whitney reading to Spencer on our bed

Whitney wears this bunny mask around the house every chance she can get

Whitney dressed Spencer up in Sarah's clothes while she was at school.  He was a bit embarrassed but liked the lava lava feel.

Mikey found someone's noodles from lunch

The pool water was too cold to sit in, but dipping in their feet was just right

Future basketball star/firefighter

And one more blast from the past, I ran across this the other day.  Here Tim and I are signing our marriage license just over 8 years ago.  Could we have even imagined the journey we would walk together so soon into our marriage.  I feel so grateful we have each other.

Stomach Flu

Tim:

Quick update.  Michael's been really sick this week.  We were concerned that he'd need to be admitted to the hospital just to keep some fluids in him, but every time he threw up we'd keep trying to put food in him until something would stick.  Liz took Michael down to the Children's Hospital on Denver for a routine checkup and found herself fighting overwhelming exhaustion and nausea herself.  Turns out she had the stomach flu, which is probably what Michael has been fighting as well.  It's one of those weeks you just take one day at a time.  The last few days Michael has been feeling much better and actually did much better during physical therapy on Friday than he's done in a long time.  Liz has fully recovered as well.

I took Spencer and Michael to their first baseball game on Saturday.  It was a high school game, and our family is friends with one of the boys on the Fort Collins team.  Yummy snacks and his fascination with baseballs kept Spencer plenty occupied during the game.  Michael slept through some of it, although the shouting from our friend's family, whom we were sitting with, kept waking him up.  I teased them that we always get the obnoxious fans sitting by us at ball games.

Liz's sister Julie came for a quick visit this weekend.  It's been great having her here.  She helped us out with some desperately needed yard work and has been great to laugh and visit with.

good neighbors

We are lucky enough to have the best neighbors on the planet.  I don't know how it happened that way, but it just did.  Let me tell you about the Paul and Gloria Johnson.  We've known the Johnson's since Tim moved into this house almost 11 years ago.  They came to our open house when we got married in 2004 and we've spent many holiday dinners and game nights together. 

I know this isn't the greatest picture, but it's the only one I could find of these good people at our open house when we got married.  Their son Matthew is in the background.  Time flies and now he is getting married this summer.

Gloria even took our phone call at 2:00 AM last July and stayed with our kids while we went to the hospital to bring Michael into the world.  They've always taken extra good care of our family. 

Last Friday evening, we had tickets to see the local junior high version of the musical Oklahoma with our girls because our home teacher was starring in it (home teachers are like lay-ministers that come to our home and check up on us and leave us a spiritual thought.  Our home teachers happen to be a really great 14-year-old and his dad).  Earlier in the week I had arranged for these wonderful neighbors to come and watch Spencer and Michael while we took the girls to the play. 

Just as the Johnsons arrived around 6:30, I woke Michael from his nap and discovered he had a fever of 103, which meant that we weren't going to be going to Oklahoma, but instead to the Children's Hospital to run the myriad of tests he has to undergo when he gets a fever.  Paul and Gloria were kind enough to take our tickets and our kids to the play while Tim and I headed down to Denver.  Michael "passed" all the tests and was well enough to come home around 2:30AM.  When we arrived home, we discovered the Johnsons had had a terrible tragedy that night while watching our kids.  Gloria ran home after putting our kids to bed to get her glasses.  She discovered their sweet black lab of 12 years, Kiara, was having trouble breathing.  Paul took her to the animal hospital while Gloria stayed at our house with our children.  Sadly, they could not revive Kiara and she passed away.  My heart aches so bad for these sweet people who were serving my family when such a sad and unexpected tragedy occurred.

I told you we have the best neighbors on the planet.  Thanks Paul and Gloria.  I hope Kiara is loving dog heaven. 

Dreams

Michael hasn't been handling this round of chemotherapy very well.  He has been throwing up pretty regularly even with heavy anti-nausea meds and has been fussy and tired.  It has made for some really long and difficult days and nights.

The other night I had a dream that Michael was sitting in his high chair and smiling back at me.  The next night Tim said he had a dream that Michael was crawling and smiling at us.  It probably sounds silly, but when we wake up from such dreams, it makes us feel happy and full of hope.  The doctors took some time observing Michael on Wednesday and said we should remain hopeful that he might regain some of his facial movements.  It will just take time.  Sitting up and crawling would be dreams come true as well, but in time hopefully will happen.  I came across this website on Bell's Palsy and found it very helpful.   Having both sides of the face paralyzed is very uncommon, but there is hope for healing.  The symptoms described here are pretty accurate for Michael's condition.

I'm so glad I took the time to plant a load of spring flowers last fall.  I had no idea how they would lift my spirits this spring. 

The kids have been highly entertained with the Piano Guys (check them out here if you haven't seen what they do).  I never thought a cello could be so cool.  It's been awesome to have good music in our home entertaining the kids when my attention is so split.  Maybe one day I can meet these guys in person and thank them for being our "friends" during this hard time.  Maybe my kids will want to be musicians one day.

Dreams.

The mini survivors

Part of this blog is a chance to document how our family is going on amidst the challenges of Michael's disease.  We still put on our shoes like everyone else and just get up and go.  It's all you can do.

Often, siblings of cancer kids are called the "shadow survivors" because their lives are often greatly disrupted over the course of their brother or sister's illness.  On this post, I want to take a minute and record some of the good things going on with these little troupers.

Easter Bunny Magic:  Thank you again to the dear family in Firestone who made our Easter magical with these baskets.  Truly, they were gifts.

We hid the baskets under the trampoline

Here are the 3 with their goods

Then we had a little egg hunt for fun

Spencer is pretty excited about his chocolate bunny

Sarah telling Whitney where to find an egg (instead of taking it for herself, wow)

We went for a little walk behind the path of our home and let the kids take pics of the beautiful blossoms.

Grandpa B. came with us and here is explaining to Sarah how a camera works after she asked him.  It's not looking like she's catching on too well to what he was saying.

And here he's explaining to Spencer how a dandelion works...

I think he's a bit confused too...

Just kidding.  My dad is the best and I'm so happy he was here to buoy up our spirits and support my mom as she cared so well for us. 

Whitney climbed a tree - seriously stepping out of her comfort zone

The trampoline has been heaven-sent, keeping the trio busy and happy amidst the upheaval around here

Whitney attended "Kindergarten Roundup" in preparation for her to begin K next year.  She is waaaay taller than the others, although she will be near the youngest in her class. 

Chemotherapy Round 3

It was a windy spring day today as we drove the 64 miles back to the Children's Hospital to begin round 3 of chemotherapy.  All the kids came along for the chance to play in the hospital's playroom and eat snacks and be kids.  My mom came along too and we had a wonderful day together. 

Michael got his stitches out this morning and held perfectly still for the procedure.  Even with his paralyzed face, he was eager to see his doctor and nurse friends because they are so kind to him.   Everything went well with the chemo. 

On the way home, we said goodbye to my sweet mother and dropped her off at the airport to head back to Utah.  She has been heaven-sent and I am so thankful for all she has done to help us through this difficult time.  She cleaned and cooked and nurtured and loved and so many times said just the right thing to help me feel better during some really tough days.  Thanks mom.

We went an entire week without having to go to the hospital!  Michael's hasn't been throwing up as much either.  Here are a few pictures of other things from this week:

Bath time

This isn't the prettiest pic but I wanted to document his scar.  He is such a brave kid.

Mikey's easter egg this year nestled on his high chair.  I am so grateful we had easter together.

His occupational therapist brought us a huge bag of plastic balls for Michael to sit in and play for tactile stimulation.

It looked like so much fun, Spencer had to have a turn too.

We are still hoping and praying Michael's facial palsy may be healed.  We find ourselves frequently on our knees day and night.  Tomorrow we will start another round of chemotherapy.

Easter

A week ago we were fully expecting to be spending this Easter weekend at the hospital.  What an Easter miracle that Michael recovered quickly enough to be able to come home last week.

Michael continues to make progress each day.  His eyes are starting to stay in sync and focus a bit better and for longer periods of time although they cannot turn out completely.  He has a hard time blinking, so he stares for long periods of time and then rolls his eyes way up into his head periodically to try to get the equivalent effect.  We have a gel we put into his eyes to help keep them from drying out.  Fortunately he closes his eyes fairly well when he sleeps.  What used to be his weak eye is now his strong eye, so he still gets to be a pirate for an hour every day, now with his right eye patched instead of his left. 

We're still trying to figure out ways to keep him from throwing up his feedings.  Sometimes it's a matter of feeding him again every time he throws up until one of the feedings sticks.  He's showing several motor-neurological deficits which are not improving yet.  In addition to his inability to blink and form facial expressions, he cannot close his mouth all the way, his left foot remains curled and he has general weakness on his left side.  The last day or two we have gotten him to laugh a few times.  It's so great to see his mood improving and yet heartbreaking in that in hearing his laugh, his face remains frozen showing no emotion.  We pray vigilantly that his nerves may reconnect.  That he may one day again be able to do something as simple as smile.

We had several kind families provide Easter for us this year.  One set up an Easter egg hunt for our children last weekend while we were at the hospital.  Another family, whom we hadn't even met before this weekend, was inspired by Elder Rasband's recent General Conference talk and created Easter baskets for us and each of our children.  It was great meeting them, our children had a ball with Easter, and we felt a huge burden lifted. 

Liz's dad drove out from Utah to join us for the weekend.  We kept him busy with a few projects around the house while Liz's mom continued to help us hold down the fort.  We had an early birthday celebration for Liz and enjoyed an Easter lunch together before he had to drive back.  It was great having some family in town to spend Easter with.

We are so grateful for Easter and all its meaning.  Nevertheless, our hearts sting in the moment.  Some days and moments are very difficult.  But we try to press forward with faith.


Today at church we had a special musical program for Easter.  With the chaos in our lives right now it didn't work out for either of us to sing in the choir.  Which was probably for the best anyway, since Liz and I basically sobbed during much of the program.  It started when a trio sang "Consider the Lilies of the Field".  I don't think we'll ever be able to hear this song with a dry eye again, with lyrics such as:

Consider the sweet, tender children
Who must suffer on this earth...
The pains of all of them he carried
From the day of his birth.

We thought about Christ's resurrection, which we celebrate this Easter season, and how grateful we are that some day Michael will  be resurrected with a perfect body, free from cancer, free from scars and disabilities.  During a time when we're feeling so much sorrow, we were deeply touched that this is actually a time to rejoice. Christ has already overcome every trial and burden we are facing right now, and in the eternal scheme of things, the victory has already been won.

 

Michael relaxing with Grandpa

Decorating Easter eggs

Easter pictures

Last Wednesday, before Michael's surgery and on a beautiful warm spring day, we took some time to take Easter pictures of the kids.  We had so many other things to do, especially since we were scrambling to get ready for the hospital and Michael's surgery, but I really felt like I needed to capture the moment.  We did not know how Michael would come out of surgery and I wanted to capture him as he was.  Looking back now at just a little over a week ago, which now feels like a lifetime ago, I am so glad we took them.  They have already become a treasure.  Here's how they turned out:

well, wouldn't ya know...

We came home today.  It is truly miraculous in so many ways but we are here on our own couch, cleaning up our own house and loving it.  Tim even took some time to try out the new trampoline that arrived while we were away and jumped with the kids.  How we miss those little faces while we are away.  My mom has done a spectacular job of keeping our lives afloat in Fort Collins.

Michael has loved being home.  In the hospital after the surgery he seemed so frightened and unsure.  But here at home he's gaggled and babbled and gabbed and played with just about anything we put in his hands.  He tries to study everything and everyone the best he can with his eyes.  And he enjoyed splashing in his bath tub.

Michael's stitches this time around are black nylon stitches, so they are much more dramatic and defined on his head than the white dis-solvable ones they used on the first surgery.  They make his surgery much more pronounced.  Today at the Ronald McDonald house, a group of high school juniors made us lunch as a service project and we met the sweetest girl named Annie.  She held Mikey and played with him for a while.  Later I bumped into her in the elevator with some of her classmates and she was sobbing.  Little do we realize the effect it is sometimes for people to meet such a little guy with a zipper up the back of his head and a life threatening disease.  It seems to us like just something that we just live through. Once again, almost ordinary.

We will miss the goodness of the Ronald McDonald house and all the wonderful people who took care of us.  And the familiar nurses and volunteers and many people who care for the families at the Children's Hospital.  But, oh, it's so good to be home.

We start another round of chemotherapy on Wednesday.

Wireless Baby

Tim:

Michael continues to make steady progress.  Today they removed the last of the wires and tubes he was hooked up to, so he's finally gone wireless!  His recovery thus far has been nothing short of miraculous.  We were expecting to spend 2-3 weeks with him in the hospital.  He could go home as early as tomorrow, only 5 days after his surgery!  Of course we're knocking on wood, not holding our breath, and citing all the usual disclaimers.

The ophthalmologist came today to check out his eyes.  It's still a matter of watching and waiting to see how much of his vision he'll get back, but there are some therapies we can do to try and maximize his vision.  We can tell he has a little bit of his vision back.  There's a toy in his crib with soft lights and relaxing music and sounds that helps soothe him when we're trying to get him to sleep.  Last night when we turned it on for him he just stared at it, completely mesmerized by it.  It was so cute watching him.  Today he's tried really hard to focus on our faces.  It's exhausting and frustrating for him, but he keeps trying.  What a trooper.

We took Michael for a wagon ride around the hospital today.  He enjoyed the nice break from his hospital room.

We try to find happiness and gratitude in the small things during these trying days.  Michael is attempting to look at people and objects today, which shows that his eyes might be improving.  His eyes cannot last long on whatever it is he is looking at, but he tries.  He especially studies people with low voices, like our male nurse today. 

His face is still paralyzed.  Funny how when things are taken away, it makes you realize how much they mean to you.  It makes me think of how a simple smile can be a gift.  I hope and pray and wait for that day.

Today he had physical therapy and managed to sit unassisted for 12 seconds.   That is gift.

Michael with Terry, his PT

Two for-reals cheerleaders, one from Notre Dame and one from Baylor, stopped by to visit Michael and cheer him on.  The women's NCAA final four is playing here in Denver tomorrow so the cheerleaders came by the hospital today to see the kids.  A news camera from 9news also came with them and filmed.  We had to sign waivers just in case Michael makes it on the evening news.  They also left 2 basketballs - in case Spencer wants one too.

A fun little folk band stopped and serenaded us with "In the Jungle."  Michael sometimes beats time with his hand or foot.  It was great music.

We've had some wonderful meals provided by volunteers at the Ronald McDonald house.  Some are various youth groups, companies or even families who once stayed at a house and want to give back.  Maybe one day we can do that too...

There are treasures from sweet friends in Fort Collins too, coming as angels to our home to bless my dear mother and children's lives.

A beautiful, soft quilt made by many of our friends in Fort Collins with personal messages on each block.  Tim and I couldn't keep the tears back when we saw this.

And I am so thankful that I have my little guy for 9 months today.  If it weren't for the blessing of advances in medicine, I wouldn't see him on this beautiful day. 

Easter pictures taken last Wednesday before surgery.  We love our little guy.

Musical Rooms

Tim:

One of the things we like about the Ronald McDonald house is that once you get a room, you get to keep that room for the duration of your stay.  It's been a welcome contrast to the sleep rooms at the hospital where you have to pack everything up everyday and hope that you'll be lucky enough to land a room the next night.

While our accommodations have been a lot more stable this time around, poor Mikey keeps getting bumped from room to room.  Today he had another room change, apparently because the room he was in has special equipment for epilepsy and was needed for such.  As we packed up our possessions in a little red wagon, we joked with the nurses to make sure we didn't get a special room this time around that's reserved for, say, patients from Montana or something.

Michael has had a better day today than yesterday, although he still needs a ton of soothing and holding.  He's always been a very observant little guy, so we wonder if not being able to see is part of what's freaking him out.  You can tell that he's trying so hard to focus on us, but his eyes just won't cooperate.  When he cries he has no tears and no expression on his face.  It's kind of a strange sight to behold.

We've been asked if the surgeon went through the same incision site on this surgery as he did last time.  The answer is yes, and it actually made sewing Michael back up a bit tricky since it's harder to sew two pieces of scar tissue back together than two pieces of normal skin.

Yesterday Liz's sister, Becky, and her family drove out from Utah and they came to visit us at the hospital today.  It was so great to see them.  Liz's mom brought our other three children here as well.  Since children still aren't allowed in any of the patient areas right now, we congregated at the Ronald McDonald house for a few hours.  The kids had a ball playing in the various play areas while the adults got a chance to visit.

Since it's General Conference weekend we tried to watch what we could from the hospital.  Not surprisingly we only managed to watch a couple of talks, but one of the talks we did manage to catch we felt was written specifically for us.  It was Elder Rasband's talk where he spoke of his grandson who was born with a rare genetic defect.  He gave some excellent counsel and perspective for parents like us who are raising a child with serious health problems.  He also spoke of the angels and friends of those who provide help and support to families like ours.  What a tender mercy that Elder Rasband gave the very message we needed to hear during one of the few times this weekend when things were settled down enough for us to hear it.

 The Ronald McDonald house we're staying at in Aurora.  It's only a couple of years old and about a mile from the hospital.

 Sarah and Whitney in the playroom at the Ronald McDonald house.

This is the view we enjoyed from Michael's room for a day until we were moved again.