YMCA

This week we spent four days at the YMCA of the Rockies, about an hour away from our home, courtesy of the GRACE program.  GRACE stands for "Giving Respite And Comfort to Everyone", and this year their focus has been on families dealing with pediatric cancer.  We stayed in a 3-bedroom vacation home, all of our meals were provided, and many activities were available free of charge.  Liz says that her favorite part was not having to cook or do dishes for 4 days.  Funny enough, even though we could eat for free at the YMCA dining hall, whenever the kids spotted the fast food restaurants in Estes Park they would ask, "Can we eat at McDonald's?  Can we eat at Taco Bell?  Can we eat at Subway?"  Sorry kids, maybe another time.

Considering it was mid-October in the mountains, the weather was nice and we were still able to enjoy some of the fall colors.   The view from our front porch was amazing, you can get a taste of it reflected in the windows in some of the pictures below.

"Vespers #23" our home away from home at the YMCA

We were soooo looking forward to getting away and taking a break from the grind of our routine.  This trip to the YMCA really hit the spot.

Our kids loved virtually everything about the trip and even managed to get along reasonably well.

There's a beautiful walking path around the lake in Estes Park.  At one point on the trail we saw dozens and dozens of elk, many of them up close.  A few nights later an elk was eating outside the kids' bedroom window.  Its antlers were banging against the wall as it ate, which woke us up.

Of course the best part about lakes is throwing rocks in them.

Even Mikey got into the rock throwing action.  You can see the rock he's throwing in this picture.

There goes another rock.  His throw isn't that great, so his rocks mostly went straight down.

Putting around on the miniature golf course.

Brooklyn mostly enjoyed eating the golf balls and climbing on the rocks.

Lots of fun rocks to climb near our cabin.

Can't tell if they're sitting on a beehive or the Death Star.

The kids called this rock the "Bear Cave".  If there were any bears that wanted to sleep there, clearly they have grown tired of little children climbing into their bed and have long since moved on.

The top of the "bear cave".

In addition to climbing rocks and playing in the dirt, we spent time at the pool, the library, the craft center, miniature golfing, reading, playing games, and ending each day with popcorn and a movie night at our cabin.  With so many fun activities available, we made a conscious choice to try to strike a balance between going out and having fun and just taking it easy and relaxing.


As we get back into our daily routine, we're trying to figure out how to continue physical and occupational therapy for Michael.  We've been very fortunate to have excellent therapists coming to our home over the last two and a half years to help him as he tries to learn skills we take for granted, such as walking and feeding himself.  Brooklyn, who is fifteen months old and is two years younger than Michael, has now surpassed Michael in most of his physical capabilities.  It's really eye opening to see how quickly and naturally a child learns these fundamental skills that Michael still struggles with.

We found out recently our insurance has decided to not pay for in home therapy for Michael anymore.  They decided that since he's obviously well enough to go to preschool he is no longer "home bound" and doesn't qualify for in home therapy.  Never mind that in home therapy costs the same as outpatient therapy.  Or that outpatient therapy just isn't feasible for Michael or our family right now.  We're appealing the insurance decision and are investigating other avenues to see if we can get funding for his therapy.  In the meantime, we're super grateful for his therapists and that we were able to get therapy funded longer than we originally expected.  Also, he gets brief visits from some therapists that visit his preschool each week, and we'll continue to work with him on our own at home as best we can.

School begins

Two years ago I couldn't have even imagined that Michael would go to preschool.  At that time, one of our doctors had told us he didn't expect Michael to live more than a year, so attending preschool seemed like a far-off dream.  And here it is.

Michael is attending a preschool that's about a 20 minute drive from our home.  We chose this preschool because the teacher, aides, and students all use and know some signs.  The teacher also speaks while she signs.  He wasn't too thrilled the first week of school and cried every day (and because he is so loud and screams when he cries, it startled several other kids in the class, which led to pandemonium every morning).  By the second week, he started settling in and the teacher told me that he was being his silly-self one day and got the other kids and teachers to all laugh at something silly he was doing.

He takes his shiny red walker and proudly walks to class. It's a miracle to watch everyday.  He goes M-TH in the mornings.  I have been focusing all my energy on getting him settled in school that I don't have many pictures so I will have to post them later.

The three oldest kids started at the same school this year.  This is the 2nd year we are at this school.

Spencer started Kindergarten.  He is half-day in the mornings as well and loves every minute of it.  This week he was "student spotlight" and just soaked up the attention from the class.  He is usually shy, reserved, and often over-looked, so the extra attention was like gold to him. 

Sarah started 3rd grade and is enjoying it.  It helps that we are at the same school we were last year so she has friends she knows this year.  She is in advanced reading and math classes and continuing with piano lessons.  Although she is very talented and driven, she burns herself out easily and so we've made a deliberate decision to keep her extra-curricular activities to a minimum.  She really just prefers to snuggle up in her pj's at home and draw, read, or make elaborate play set-ups.

Whitney started 2nd grade and is doing alright but with a few bumps in the road.  We aren't too happy with her math and reading placement this year. She's very bright but every year seems to slip a little further behind in school. She has a great teacher this year so we are hoping for a good year for her.  She and Spencer are also continuing with their Let's Play Music class.

For about 2 hours every morning it's just me and Brooklyn.  She takes a nap most mornings giving me a couple hours to myself to get some things done.  I haven't had time like this in several years.  It's amazing.

Birthdays and Camping

This month Whitney and I celebrated our birthdays together!  She loves telling people that she has the same birthday as her daddy.  We were fortunate to have two of my siblings (Ken and Becky) drive to Fort Collins for the weekend to help us celebrate.  The cousins had a great time destroying the house together.  Liz felt badly that last year things were so crazy that I basically bought and wrapped my own presents, so she worked hard this year and did a great job making it a fun, low key weekend.

Whitney had another birthday party with her friends the following weekend.  It was a Pirate Fairy themed party in honor of one of her favorite movies.

The older kids have wanted to try out camping this summer.  We set up a tent for them in the backyard a few months ago, but they came inside during the night when they got scared.

A few weeks ago they were determined to try again, so we set up the tent once more in the backyard.  We made sure it was a clear, warm night without any rain in the forecast, and that it wasn't a night when the sprinklers were supposed to run.  At 3am they came running into our bedroom, soaking wet and screaming that the sprinklers were on! It turns out the previous home owners had set up another sprinkler program that I wasn't aware of and which had only been partially deleted when I set up ours.  Whoops!

The next night they were doubly determined to try one last time.  There was a slight chance of rain that night, but we didn't think it would be a problem.  As the kids started settling into the tent, the rain started pouring down in buckets!  We quickly threw the rain tarp over the tent and waited out the storm inside the house.  When it finally stopped raining, we dried off the tent floor, secured the rain tarp, and let the kids settle into the tent knowing that they should stay dry.  Sure enough, when we woke up the next morning we realized the kids hadn't come into our room.  We were thrilled they had finally had a successful night sleeping in our backyard.  That is, until we noticed them fast asleep in their bedroom.  It turns out they had woken up to some thunder around 2am and crept back into their beds!

The following week Liz took the kids mommy camping to celebrate the last week of summer vacation. Actually, some friends of ours organized it and invited Liz to join them. It would be way too hard to spend the night in a tent with Brooklyn and Michael, and since Brooklyn is still nursing and I have to work, it's not like she can just leave them at home.  Fortunately the campground is only about 40 minutes away, so she went up during the day and brought the younger kids home at night.  Dads weren't invited, so we went to a movie together the first night and arranged with our wives to surprise the kids the second night and join them for dinner.  We brought fudgesicles and ice cream bars with us, which were an instant hit with the kids.

Farewell Sweet Hazel

We were stunned and sad to hear the news that Michael's little friend Hazel had passed away on August 4th.  Although we had anticipated this day for many months after her cancer had been diagnosed as terminal, it didn't make the news any easier to bear.

We first met Hazel and her parents at Children's Hospital when Michael was six months old and Hazel was nine months old.  Michael was recovering from his first surgery to remove his brain tumor, Hazel was recovering from her second.  As they underwent treatment they shared many things in common such as the same rare form of brain cancer cancer (Ependymoma) and many of the same doctors (such as neurosurgeon Dr. O'Neill, neuro-oncologist Dr. Foreman, and radiation oncologist Dr. Liu).  During part of their recovery they were even in adjacent recovery rooms on the sixth floor of Children's Hospital, which confused their nurses on a few occasions.

Even with so much in common, Michael and Hazel have had many different challenges in dealing with their cancer.  We were so grateful that Hazel never lost her sparkling smile like Michael did.  But she had other complications, including the tumor incurably spreading to her spine before her second birthday.  Miraculously, she survived a year and a half beyond that, for which we are very grateful.

We've kept in touch with Hazel and her family over the last few years and joined together in birthday celebrations and other happy occasions.  For his first birthday, Michael's Aunt Carrie wrote "Mikey's Ride", a picture book about Michael and Hazel and their days together at Children's Hospital.

A scene from "Mikey's Ride" where Michael races Hazel in a red wagon at Children's Hospital.  In the book, the top half represents what is happening in Michael's imagination, the bottom half shows what is really happening.

On Monday Liz and I attended Hazel's funeral in Denver while the daughter of some friends from church watched our children.  It was a beautiful and touching funeral that celebrated Hazel's life through words, music, and pictures.  You could feel the outpouring of love and support for her family.  We were pleased to see several doctors and nurses from Children's Hospital there who have treated both Hazel and Michael over the last few years.

Our thoughts, prayers, and love are with Hazel's family at this time.  As hard and painful as the road may be, we're grateful that we (and they) don't have to walk it alone.  God be with you till we meet again, dear Hazel.

At Michael's first birthday party in 2012

At Hazel's second birthday party in 2013

At Hazel's third birthday party in 2014

Lemonade Beats Cancer

All summer long Sarah has dreamed of putting together a lemonade stand to raise money to donate to Children's Hospital on behalf of Michael for cancer research.  She finally got her chance this last Saturday.  Liz bought a whole bunch of lemons and limes, and Sarah spent hours squeezing them into lemonade and making posters for the lemonade stand. 

Saturday morning Liz took Sarah, Whitney, and Spencer to a busier street in our neighborhood hoping to get more traffic than our relatively quiet street.  Within an hour the lemonade was gone and they had made close to $20.  One customer had given her a $5 bill and told her to keep the change. 

Liz and I matched what Sarah earned with our own donation and helped her donate it online to the Tanner Seebaum Foundation www.tannersfoundation.org, which is a local organization that gathers donations for Ependymoma research at Children's Hospital.  Although the amount we donated wasn't a great deal of money, it made Sarah (and her parents) really proud that even a young girl with desire and motivation can do something to help her little brother in his battle against cancer.

We also spent the last few Saturday mornings staining our side of a new fence our next-door neighbors put in a few months ago.  We started out with paint brushes, but the progress was agonizingly slow, particularly because of a wire mesh on our side of the fence.  The kids sure enjoyed putting on their paint clothes and helping out, though.  The next Saturday we bought a cheap paint sprayer, which allowed us to finish the job in a few hours.

Last week I went to Santa Clara, CA for a business trip.  I grew up nearby in San Jose, so a great side benefit was spending time in the evenings with my parents, as well as two of my brothers and their families who came to visit one evening after work.  I don't get to see my California family nearly often enough, so it was a great mini reunion. 

Naturally when dad goes away on business, mom wonders what kind of "excitement" is in store for her as she manages the kids and household on her own.  I hadn't even left yet before the excitement started.  The night before my trip, Michael had a hard fall and hit his chin on the end table in our family room.  There was a lot of blood on his face and on his pajamas, and we discovered that his tooth had bitten all the way through his bottom lip.  We realized he would probably need stitches, but the last thing we wanted to do was spend the night at the ER.

We remembered that one of our neighbors is a pediatrician at the practice we go to.  And although we hate to be a bother or take unfair advantage of someone, we decided to see if she was home and would be willing just to take a quick look at the injury to see if she thought we should go to the ER to get stitches.  Fortunately she was home (she had just arrived back in town that morning) and was more than happy to help.  Better yet, because both puncture wounds were on the meat of the lip, she didn't think stitches were necessary and the lip would heal well on its own.  We didn't have to spend hours at the ER after all!  Sure enough, a week later his lip is looking really good.  What a blessing.  And fortunately that was the extent of any major trauma while dad was away for a few days.

Michael's lip looks really good just a few days after he bit through it

Last month I was asked to speak at church on the topic "Love One Another".  The result was a bit of a personal message, and I've been encouraged to put a copy of it on our blog for the benefit of family, friends or anyone else who would like to read it: http://fortwheeler.blogspot.com/p/blog-page.html

MRI results and more vacation pictures

Mikey had a clean MRI this week!!! We are so thrilled (and relieved)!  We took the kids to Spooner's for frozen yogurt that night to celebrate.

He took a hearing test right after his MRI due to concerns that over time he may lose his hearing from the radiation.  He failed the hearing test miserably.  They found a double ear infection which may be the reason why he failed the test, so they'll retest him in 6-8 weeks after his ears clear up.  Interestingly enough, his oncologist spotted the ear infection on the MRI as well.  We had no idea about the infection until the hearing test, he hadn't shown any noticeable symptoms.  The next day he had major symptoms of an ear infection, but he's starting to do better now that the antibiotics are starting to kick in.

Here are a few more pictures of our vacation adventures in Utah.

All seven of us crowded around a booth at Wendy's for dinner on our way to Utah.  We had so much fast food during our vacation. I never thought we'd say it, but we're DONE with fast food for a while!

We spent a day boating at Pineview Reservoir.  Rather, Brooke spent the day eating sand at the beach.

We brought a pack n play in case the kids needed to nap.  Michael hates getting dirty, so sometimes he preferred chilling in the pack n play over crawling around in the sand.

The kids played in the water and on the beach when they weren't in the boat.

Relaxing on the boat with our brother-in-law and niece

This was Sarah's first time knee-boarding. She was such a natural at it!  She got up on her first try and did great!

This was Tim's first time knee-boarding as well.  I'm not quite the natural at it as Sarah, but I did manage to get up briefly.

Liz blows us all out of the water with her wake-boarding talent!

Tim held Michael while getting pulled on the big raft.  Most of the kids got a chance to ride it.

Liz's older siblings both ran the Centerville 5K early in the morning on July 4th.  Liz snuck over to take pictures of them running and after crossing the finish line.

Watching the Centerville 4th of July parade!  The highlight for the kids is sitting on the curb where can catch the candy thrown to them by the people in the parade.  There's nothing like a good ol' hometown parade.

Liz and I went on an over-nighter in beautiful Park City to help celebrate our 10-year anniversary!  Our anniversary was actually in March, but Brooklyn is still nursing and still doesn't do very well with bottles or sippy cups yet.  An over-nighter is about as long as we dared escape!  The Bellamy's were wonderful to take good care of our kids.

In Park City we went on the alpine slide, alpine coaster, and their zip lines.  They have a lot of great restaurants as well, including a fantastic Brazilian restaurant that brought back memories to Tim of his 2-year mission in Brazil many years ago.

Cherry Hill is a great family friendly water park with a pirate ship, slides, and a lazy river.  We had a great time there with 2 of Liz's brothers' families.

On our last day in Utah we went with Liz's sister's family to Lagoon.  That's always a highlight any time we visit Utah in the summer!  The first ride we took the kids on was Bombora, a fun "for-everyone" roller coaster.  Even Michael was barely tall enough to ride so we took him along.  But turns out the roller coaster isn't for everyone - it scared Michael so much he wouldn't ride on any thing else for several hours!  Eventually in the late afternoon we were finally able to coax him onto a kid's ride with the ride attendant's help.  After that, he had a blast on the more gentle rides the rest of the day.

Michael and Spencer after Michael finally forgave us for putting him on Bambora.