One Wonderful Birthday

Michael turned 1 yesterday and we had one amazing weekend to mark this special time for him.  I will post more pictures and details later when I have a bit more time.  We had a huge surprise Saturday morning when my entire family (there are 7 kids in my family) after driving the 8 hour trip, came caroling on our doorstep to celebrate the weekend with Michael.  We had no idea they were coming but it was exactly what we needed during such a difficult last couple of weeks.  It was probably one of the best days of my life.

And then last night we had an incredible party for Michael with so many wonderful friends and neighbors coming and sharing the special day with us.  You won't believe how amazing everything turned out.

For now we have a revolving door of family visiting and preparation for radiation starting in 2 days.

Michael, we feel so blessed that you were sent to our family.  Thank for being such a brave little guy, loving everyone around you and being so darn cute. We love you so much.

Here are a couple teaser photos from such a special weekend:

Surprise party hosted by Liz's family complete with pinata

One of the 4 birthday cakes this guy was spoiled with - but he deserved every one of them

Michael stuffed his face with mashed potatoes on Sunday.  He must be getting ready for his birthday cake!

For those of you who are local, we are throwing a huge bash for Mikey's birthday and we would love for YOU to join us.  This is a special birthday as he has been so Brave this year and we don't know how many more years we will be able to celebrate that.  Here are the details:

Michael's Big 1!

• When:
  Monday, July 2 from 6:00 PM to 8:00 PM
• Where:
  2607 Willow Creek Drive

This is an Open House - come and go as you like. 
Our Little Brave has been through so much during his first year, we would love for you come shower him with hugs and kisses and to celebrate his special day. 
No gifts please. 
Note: We would be thrilled to have anyone who has been touched by Michael's life to come  (I am sure I am missing people on the guest list so please pass this invitation along).

Tough News

Tim:

Michael had his MRI today to see how his tumor is progressing and whether he would need another surgery.  We have good news and bad news.  The good news is that Michael will not be having surgery.  He will proceed with radiation as planned.  The bad news is that the MRI showed that more tumor has grown back on his brain stem.  It's large enough to be a concern and under ideal circumstances they would want to remove it before starting radiation.  But because of how bad the neurological damage was from his last surgery, they don't want to go anywhere near his brain stem if they can help it. 

So although the situation is less than ideal, fortunately the tumor is small enough that radiation still has a fair shot at killing it.  Radiation won't actually remove the tumor, but if it can kill it it will prevent the tumor from growing any further and causing any more damage.


We're grateful for family and friends who continue to keep Michael in their prayers!

Countdown to radiation

Last week during Michael's regular checkup his blood counts were dangerously low, the lowest they've ever been.  If he so much as sneezed he would need a blood transfusion to get some white blood cells in him.  We were really careful with him, and fortunately he was blessed to not pick up any bugs.  He was just more lethargic and nauseous than usual.

At his appointment we finally got a few dates nailed down for radiation.  His MRI is this Thursday, June 21st.  We are REALLY hoping and praying that it won't show any visible signs of his tumor.  If that's the case, then on Friday he has his first radiation simulation.  That's where they make a mask for his head that will keep it immobilized and in the exact same position for every one of his 30 radiation treatments.  He will do a dry run of everything he'll be doing on radiation days, including being put to sleep, but minus the radiation.

On Monday next week he'll go through a second dry run where they make any additional tweaks to his mask and the procedure to make sure everything is perfect.  Finally, on Thursday July 5 he'll begin radiation.  His Monday thru Friday radiation appointments will be early in the morning (around 8:30am) which will be good since he'll be put under general anesthesia every day so he has to be on an empty stomach.  We don't know much more than that, hopefully we'll get more details when we talk to his radiologist, Dr. Liu, on Friday.

Michael sure seems to love his dad.  Often when I come near him he wiggles excitedly and says "Da!"  It's the cutest thing and melts my heart every time.  I would do anything for that little boy.

Daddy and Michael are great pals

Michael is really getting into Legos lately.  We're still trying to teach Michael to sit up on his own.  This pillow wraps around him to give him a little bit of support and plenty of cushion when he falls over.

We took the kids to a splash park in downtown Fort Collins a week or so ago.  There was live music and a balloon man who thrilled our kids with these free balloon animals.

More FAQ's and other thoughts

Michael has been pretty sick most days from the effects of the chemo.  The last couple of days, in the late afternoons and evenings he seems to feel a bit better, so we have been taking advantage of that with some family fun during that time. 

Sarah hooked up a hose to our slide and turned it into a Slip 'n Slide

Splashdown!

Whitney is getting really good at swinging by herself

Spencer likes to drop-kick just about everything in sight

Spotting cloud animals and other shapes while laying on our trampoline.

Our kids LOVE watching the piano guys.  One of the piano guys actually plays the cello, so here's Spencer watching the piano guys with Liz's guitar, pretending that it's a cello.

It appears we're not the only ones putting out fires lately.  There's a really bad fire burning just west of Fort Collins right now.  Those are smoke clouds behind those houses, with a blood red sun trying to peek through.  This is the view from the front of our house.

Here are a couple more FAQ's we get regularly:

How is Michael's vision?  Can he see?
Yes, he can see but he has some challenges.  His vision is difficult to define since he can't tell us what he sees, but based on observation, he can see things pretty well close up.  Distances it seems he can recognize generally what is going on, like if I walk in a room, he will see me, but if I stand across the room and smile at him, he doesn't see that.  So based on his testing, he struggles with depth perception, so if you hold a stick out in front of him he will feel around in the area it is in until he finds it.  Also his right eye is still turn inward and can't see much of the time, so if he drops something on his right side, he'll turn his head and try to spot it with his left eye, then turn his head straight and try to feel for it with his right hand. 

What comes next now that chemo is over?

Michael has another MRI on June 21st to see if there is any remaining visible tumor.  If there is, he will need another surgery to remove it.  We're praying that they won't see any more tumor, in which case Michael will start radiation sometime the week of July 2nd, which is his 1st birthday.  We still don't know much about our radiation schedule other than it's down in Denver 5 days a week for 6 weeks.

End of Chemo

Today marks the end of chemotherapy.  At least we hope.  Michael will begin radiation in about a month and we hope and pray the cancer will be eradicated from his body by then.  If there is a re-occurrence, then we start all over again.

In honor of this last chemo, here are some FAQ's we've gotten about the process:

What is chemotherapy?  How is it administered?
Chemotherapy is essentially drugs/toxins that go directly into the body to kill all rapidly dividing cells.  Cancer cells are rapidly dividing cells as well as hair, the lining of your digestive system, and bone marrow.  There are many different types of chemotherapies depending on types of cancer, age of patient and even doctor preference.  The chemo is mixed up in a pharmacy here in the clinic immediately prior to being infused.  It's placed in a bag or syringe which is administered using a pump on an IV pole.  The pumped is hooked to tubing attached to a needle inserted into Michael's mediport.  The port has a tube that goes directly to his heart so that when the chemo enters his body, it is immediately pumped throughout it.

What do you do while Michael is receiving chemotherapy?
The IV pole is portable, so we go for walks around the clinic and I'll push the pole while we walk.

When we aren't walking around the clinic, we are in our own "infusion room" which is like a small hospital room with a bed.

Sometimes Michael naps on the bed and sometimes he plays on the bed.  But most of the time he sits on my lap or in his stroller and plays.

Sometimes we have visitors.  Our good friends, the Blanchards, happened to be here in the hospital when 13-year-old Spencer had back and spinal cord surgery last week.  He and Michael share the same neurosurgeon (Dr. O'Neill).  They paid a visit just before Spencer Blanchard was released.

What is a typical chemo-day like?
Most of our appointments start between 9 and 10 AM.  I am, unfortunately, always late.  We head to the 7th floor, which is the cancer floor, and check-in at the outpatient clinic. They first take us to a triage room and get Michael's height, weight, blood pressure, heart rate and oxygen saturation.  Then they take us to our "infusion room."  They poke him with the big butterfly needle if they need to access his port (I usually put numbing cream on it before we leave Fort Collins and cover it with saran wrap to keep it from getting all over his clothes) and give him a big oral dose of anti-nausea medication.  They draw blood and send it to the laboratory for blood counts.  That takes about 30-45 minutes.  If his counts look good, then his chemo is ordered.  That takes another 30-45 minutes to get from the pharmacy.   Then his first chemotherapy arrives.  The nurse hooks it up and gets it started and it runs for an hour.

The nurse wears goggles and gloves because the chemo will burn their skin or eyes if it gets in/on them.  Sure makes me excited that it's going straight into my baby's heart!

The nurse comes in periodically to check on things and starts a new chemo when the first one is done.  After the second chemo, she sets up regular saline to run for another 2 hours.  The chemo is very hard on Michael's kidneys so the saline is used to flush it out as quickly as possible.  In the meantime, Michael's "friends" comes to visit him.  Here they are:

Dr. Nick Foreman, our British brilliant oncologist.  We are so lucky to have the world expert on ependymoma as our doctor

Dr. Jeff Knipstein, or Dr. Jeff is our Fellow oncologist - meaning he is an advanced graduate.  Sadly he's leaving in a month for a real job in Washington DC handling pediatric brain tumors there. He and Mikey are pretty good pals.

I make my point

Molly is one of our nurse practioner's.  He thinks she's pretty cute.

Erin is his very own nurse.  She is lucky enough to be on our speed dial and he thinks she is pretty darn special...

...and she thinks he is too.

When all of the chemo and saline have been administered, the chemo nurse will unhook Michael and send us home.

Lastly, my sister sent me this YouTube video of cancer patients lip-synching to a popular song at the Children's Hospital in Seattle, Washington.  Have you seen it?  There are many things about this video that are very real to us and much like the world we are apart of here in Denver.   The kids in this video are mostly tweens and teens.  They put it together as part of "art therapy" which we also have here.  Can you spot the mediports, feeding tubes, and IV poles?  Yep, the kids stand on them and ride them around here too and they ride their bikes through the halls as well.  The nurses are just as cute, young and fun.  Most kids here have lost their hair, we are lucky that Michael hasn't.  And the kids here are just as brave and strong as the ones in this video.  Check it out if you haven't.

prayers and kids

Many people have asked specifically what we pray for right now for our Michael.  There are so many needs he has that it's difficult to narrow them down.  But here are three specific things we pray for right now:
1.  That the cancer might be completely eradicated from his body
2.  That he might blink and smile again, that the nerves to his face might reconnect and he might have use of his face again.
3.  That he might regain his balance and coordination and learn to sit unassisted.

Kids and their funny-ness

And here are some funny stories of things going on around here:

A few days ago, Sarah and Whitney were playing "hospital."  Around here, this is pretty common pretend play for the kids.  On this particular day, Whitney was the patient with a hole in her head and she needed a new brain and Sarah was going to perform the surgery.  Of course, Whitney needed an MRI first, so Sarah drew a profile MRI of what she thought the inside of Whitney's head looked like.  She got out some of our "body" books for reference material.

This morning Whitney was saying the breakfast prayer.  Among other things, she prayed that Michael's cancer would please please just go home and not come back.

My sister was known to be a bit hot-headed at times growing up, so it was pretty funny when Whitney whispered to her during church and asked, "Aunt Julie, where do you keep your tempers?"  My sister was quite surprised by this question and asked her what she meant.  Whitney replied, "Don't you remember you showed them to me one time on your face?"  "Do you mean my dimples?"  "Yeah, your dimples."

Remember this pool? 

I have a story about it.  A few weeks ago I saw it at a store here and thought my kids would love it.  I just had Michael with me so I tried to fit the pool in the minivan, but it was too wide so the guy at the store helped me tie it to the top of the van.  I carefully turned on to the main road, which was 2 lanes in each direction, only to hear a "whoosh" and look in my rear-view mirror to see if fly off the top of the van and land smack dab in the middle of the road.  I pulled to the side of the road and waited for all the cars to drive around it and then moved it out of the way.  I wasn't sure how to get it home now but I quickly came up with a plan.  I left the pool by the side of the road and drove home quickly and picked up the other kids from the babysitter's.  I told them I had a really totally awesome and cool surprise.  We then drove back to near where I had left the pool.  There wasn't a good spot close to the pool to park, so instead I pulled on a side street about 500 feet away, turned on a movie for the kids and hopped out promising I'd be right back with the huge surprise and then ran to the pool.  I'm pretty out of shape so it took me way longer than I would like to admit to get that pool back to the minivan and I felt horridly guilty for leaving them alone in the car. Not only that, there was a tall fence blocking the kids from seeing where I was going and the movie wasn't working and they didn't know how to fix it so when I returned they were all scared and bawling.  No problem, I thought, the sight of the pool would for sure turn those tears into smiles.  I said, "Look everyone, we have a brand-new pool for the summer!"  They all just looked at the pool and at me and then Sarah said, "Oh mom, that wasn't a very good surprise at all.  I was hoping you were going to come back and say that Michael didn't have cancer anymore."

I did manage to tie the pool on and get it home safely.  And it's okay, they still like the pool.

One more about Spencer and locking his babysitter out of her house...
Spencer loves to open and close doors.  He especially likes to lock them if he can.  While a friend was watching the kids while I was at the hospital with Michael, Spencer locked his favorite blanket in one of the bedrooms and asked her to unlock the door so he could get it.  We keep the key high on the door molding, no problem for Tim and I, but a huge problem for our friend who is really quite short.  She had to use all sorts of creative methods to finally get that key down and retrieve the blanket.  Just a couple of weeks later, the kids were playing at this same friend's house while I was once again at the hospital with Michael. She went outside for a brief moment when Spencer shut the door behind her and then turned the lock.  She rang the doorbell and knocked and asked him to open it but he couldn't quite figure out how to get it unlocked.  The older girls were playing in the basement and couldn't hear the commotion.  After a few minutes she gave up and luckily found another unlocked door into her house. 

May Madness

The weather has turned sunny and warm as we start our fifth and final round of chemo today.  

The last couple weeks have been busy as usual.  May is a crazy month.  School finished and Michael has grown stronger than ever.  Here are some of the highlights in pictures.

Tim's parents came from California for a short stay.  They helped us get some projects done that have been on the burner for a very long time.

The kids had fun with grandpa

Michael is learning how to feed himself and we are celebrating this milestone.  Here he is stuffing a banana in his mouth.  We are also re-patching as you can see his right eye is having trouble again.

Tim wrestling with the girls while Spencer casually browses a book.  Spence is usually our let-me-wrestle kind of a kid, so this was funny that at that moment that book was more interesting than daddy throwing him around

And here is another one of our book-worms on a warm spring day

Spencer and Mikey chillin'

Michael blew all of his therapists away last week with his progress. Here he is working with Cathy, his vision teacher (on the left) and Mary, his occupational therapist

Spencer giving Whitney a drink

Whitney made this special flower for me in preschool

Sarah dressed up for "Hawaiian Day" during Spirit Week at school

Tim and Michael are practically BFF.  I love that this kid loves his dad so much.  And goodness, any suggestions on how to keep that hair under control (Michael's, not Tim's)?

Mother's Day

This Mother's Day was pretty poignant for our family.  Holidays, birthdays and special events become more meaningful and a way to count our blessings each day we get together as a family. 

We had a special family event in Utah over Mother's Day weekend.  We really wanted to attend but we weren't sure if it would be possible.  Michael had another round of chemotherapy Wednesday through Friday and we were bracing ourselves for his health to take a nose-dive.  But amazingly, he had a couple of really great days.  Instead of chemotherapy wiping out his energy, he was energetic and happy.  We packed our bags and made a last-minute decision to go.  Tim took Michael to Denver early Friday morning for his last round of chemo.  When they returned to Fort Collins, we loaded up the van and were on our way, expecting to turn around as soon as Michael started to get sick.  By the time we were in Rock Springs, Wyoming, about 2 1/2 hours from my parent's home, we realized we made it.  Michael started throwing up the next day, but responded well to medication and had a great weekend.  He actually slept better than he has slept since he was born.  It must have been my mother's day gift.  We had a wonderful weekend with my family. 

We arrived home Monday evening and Michael's health challenges returned leaving us sleep deprived and with lots of laundry to do.  He's had ups and downs since.  Today at his check-up in Denver, he managed to eat the bandaid from his fingerpoke for blood counts.  I didn't know he had done it until he projectile puked all over me and the doctor.  The doctor said he thought he saw it in there stuck to the back of his throat until he threw it up. 

A teacher for the visually impaired came this week to test Michael's vision and see if he qualifies for her services.  His vision was better than she thought (the reports she had received from the hospital indicated he was mostly blind) so she was happy to see his sight had improved.  He does qualify and she will be visiting him regularly for the next few years. 

Spencer turned three years old on Monday, but since we were driving back to Colorado that day we celebrated his birthday today (Wednesday).   A few days ago he got hurt while playing outside and came in the house crying.  Michael was playing on the floor with some toys.  As Spencer walked by him, still crying, he picked up a toy outside of Michael's reach and tossed it to him.  We are sometimes so impressed by what a great big brother he is to Michael.

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.