From Across the Country

Micah's good friend Tyler and his family moved away from Albuquerque two years ago :(  They worked together and served together at Church, so they spent a bit of time together.  Tyler and Erin have the cutest twins.  He was in town the first weekend of August for a conference and we got to see him! The only thing that would have been better is if the whole family could have come. 

They sent Emmett a husky puppy (his mascot at UW).  

Emmett's motherly instincts have been kicking in lately.  He had to give the puppy a big kiss on the nose before napping and often hugs lion, gives him kisses and even feeds him (yesterday, he actually got annoyed that lion didn't open his mouth & was trying to actually get food INTO his mouth). 

The second half of that same week, more friends Albuquerque -- Bishop Hjorth and his wife Mee -- were in town for a conference, too!  I know, we have the best luck! What an exciting week for us!  

Emmett even took them to his most favorite place (more to come on that later). 

 I think they liked it almost as much as he does.

You can't imagine how good it was to see friends from home. We try not to worry about home too much, but we sure do miss it.  But if we can't go home, the next best thing is to have home come to us!  We would have kept them here all week with us if we could have! Thanks so much for coming!

Sweet Treat

Not sure how we got nominated, but got this fun package from Parker's Custom Cookies in Nebraska as part of a program called Desserts for the Desrving.  Such a simple little thing, but how can a surprise package that's so fun and cute not make your day?!?!

THANKS!

Prayer List

So we're still out of the hospital!  Emmett finished chemotherapy almost a week and a half ago and he's still doing very well.  On previous chemo rounds we've been back in the hospital for 4-5 days by this point in the cycle.  Our doctors told us Friday that this round wasn't any less severe than what he's had before and they expected we'd probably have to bring him in sometime over the weekend.  But here we are Sunday night and he's still doing well.

Though our doctors can't identify why Emmett's surpassing expectations, we're confident it's the concerted prayers of many people that are strengthening him at this time.  And we can't thank you enough for them!  And we especially thank those who were praying and fasting for Emmett last Sunday.  Please continue to keep Emmett in your prayers as we approach his next MRI evaluation in about a month.

Some friends recently asked us for a list of specific things to mention in their prayers for Emmett.  We put together the following list and shared it with their family.  For those others who are looking for specific things to pray for, mentioning just one or two of the items below in your prayers would be helpful.

• That the therapies he's receiving will successfully treat the tumor.
• That Emmett's spinal cord will be protected from the radiation and the intrathecal chemotherapy -- no paralysis or other permanent nerve damage resulting from the cancer or the treatment.
• That immediate side effects will be minimized -- mouth sores, nausea, nerve pain, fevers.
• That Emmett will be protected from infections while his immune system is suppressed.
• That Emmett's walking will continue to improve so that he can walk without help.
• That the damaged nerves in his shoulder, arm and spine will heal and that he will regain full use of his left arm and hand.  
• That Emmett's cerebral spinal fluid (CSF -- the fluid in his brain and spine) will continue to be free of cancerous cells and that future CSF samples will accurately reflect that there is no cancer in his brain and spine.
• The Emmett's next MRI evaluation will show no evidence of disease.
  
• The we will be directed to the alternative therapies and other treatments that will be most beneficial for Emmett.
• That Emmett's hearing will be protected during treatment and that he not experience other long-term adverse side effects such as cognitive deficits, learning disabilities, leukemia, and other physical or mental impairments or diseases.
  

We haven't mentioned on the blog yet that Emmett's latest CSF sample (taken two weeks ago while inpatient for chemotherapy) came back clear!  Chalk it up for another miracle...and then just tonight Emmett was gripping with his left hand!!!  He's tried to do various things with it over the past few weeks with limited success, but tonight he was actually squeezing with it.  Yet another miracle!  And we expect them to continue.

Again, we can't thank you all enough for your continued prayers and faith.

Alex's Lemonade Stand

Some friends from Kalamazoo, MI are hosting an Alex's Lemonade Stand for Emmett this week at the Kalamazoo County Fair.  Great work guys!  Please stop by and check it out!  We'll add more pictures and information soon.

Duck Tours

A doctor that doesn't even work with in pediatric oncology at MGH chartered a Duck Tour for the kids at Proton Radiation. Our MGH oncologist said Emmett was fine to go (as it's the same people we see in radiation every day, so there's no extra exposure) and just to make sure he didn't crash the boat into the bridge when it was his turn to drive. We invited our friend, Kylie, to come along and my sister Laree came, too.

Emmett loved the elevators when he first got to Children's. These escalators at MGH became the new elevators. He'd want to ride up and down them multiple times. We waited for the duck boat right by them and there was a little trouble because the duck boat couldn't fit down the narrow road in between buildings, but he couldn't get a hold of us either to plan a new pickup spot, so we waited for a while. Emmett could ride these things for hours, so he didn't mind!

There are a few dozen boats, each a different color/theme and a crazy driver to go along with the theme.  

Duck Boat tours are probably not the best way for a history buff to see the city, but for everyone else, it's a pretty good choice.  Their main goal is entertainment with some history thrown in. 

Right outside the public gardens where the Make Way for Ducklings statues are

 was this ice cream truck with an illustration from the book.

Diving down into the Charles River!

Emmett wanted to go sit with nurse Rachel for a minute. 
She had a great view,so who can blame him?

  She told us that she's hoping for grandkids sometime,
so I think she didn't mind the practice.

Like usual, Emmett got a little stage fright and wouldn't drive.

Emmett wouldn't look away from the crazy captain,
so i did a double big smile for him.

Secretly, I think Emmett was scared to be that close to him. 

So glad these 2 ladies made it - Laree and Kylie

This is for my sweet sis!  (and the other Nicole Anderson we know in ABQ-

how weird is that to know 2 people with the same name!?!) 

We were supposed to be admitted for chemo that weekend, but his counts were too low, so this was kind of last minute.  We're always a little hesitant to take him to events, but since the doctor said it would be fine and our nurse said we had to go and we're glad we did.  Emmett wasn't sure what to think at first, but once we got into the water, he especially perked up and loved it!

Hear the Lion ROAR!

We'll call this "Zoo, Take Two!"  Since Franklin Park Zoo's lion was so great last time, we decided we had to go back sometime this summer.  So we went last weekend before Emmett was admitted.  We only went a few hours before closing time, so we didn't see a ton, but we really just went for the train and the lion, and succeeded in seeing both!

When we first got there, we headed straight for the lion, but as you can see, Emmett

saw the train and got pretty excited about that.  

(Pointing to his nose is his sign for lion, just FYI)

The next train ride was sold out so we had to wait for another one.

The nice driver told us to come in front to take a picture and waited for us....so nice!

Turns out, watching and chasing the train is a lot more fun than riding one.  He got on and wasn't that excited and was trying to get off.  Once it started moving, he got a little less antsy and liked moving without

having to be in a carseat.

Then on to the lion...

I'm telling you, this lion puts on a great show!

 

 

And then it turned into a real adventure, because it DOWNPOURED...for over an hour!

 We had fun still, though!  After hiding out by the lion shelter, we decided to brave the run over to the enclosed monkeys, anteaters, reptiles and other random's enclosures. 

  Before we left the zoo, Emmett asked for the lion, so we stopped by one last time. 

He came right over by us and had a lot to say!

Luckily, his nurse had given him homework that while he was away at MGH 

he needed to learn to roar (and then after that, learn to say her name;)  

He did both and had quite the conversation with lion!

(and I was trying so hard not to laugh at his cuteness because he was being so serious!)

You can bet we'll be going back a few more times this year!

Henry

Meet Henry, our inspiration.

Have you ever seen a more beautiful, handsome, healthy, wonderful, inspiring boy?  Henry is a brachial plexus ATRT survivor.  His story is eerily similar to Emmett's.  His tumor originated in his left brachial plexus and compressed the nerves to the point that he lost complete function of his left arm.  His surgeons initially though the tumor was benign but were incorrect in that assessment.  He was treated on a European protocol that includes surgery, chemotherapy, and radiation.  Towards the end of his radiation therapy his doctors told his family they shouldn't necessarily expect Henry to be disease free at the end of the protocol and started discussing other options -- we haven't mentioned it yet, but our doctors told us the same thing a month ago.

Well, Henry is a wonderfully strong boy who surprised everyone with how well his body responded to treatment.  His tumor had an amazing response to his initial chemotherapy, and when they went in for surgery there was nothing left to remove!  He made it through radiation and another six weeks of chemotherapy just fine and has been disease free since his treatment concluded in October 2010.  After treatment ended his left arm continued gaining strength, and six months later he was back to full function!  How exciting is that!

 

 

We are so inspired and filled with hope by Henry's story.  It's been such a blessing to be in contact with his family and be lifted by their story.  We pray that Emmett will likewise have the opportunity to inspire other cancer fighters with his story one day...and we hope that one day he'll get to meet his hero Henry!

What a touching message from a most adorable Brit!