Tuesday, February 25, 2014

2 years!!!!

2 years ago today (Friday Feb 24, 2012) Emmett was in his first surgery, the tumor in his body just being discovered, our life already changed, not knowing yet if it was cancer nor what lay ahead.  Here we are, two entire years later!  The fact that Emmett is still with us is a huge miracle in and of itself and we are indebted to everyone for all the prayers and love and support.  We can't thank you each enough.  On top of that, the fact that we have had so many good days with him in the past 2 years is just as big of a miracle!

(Sorry for the little break...although, of course, you have no idea that there was one.  Although it's bedtime, we just realized we didn't really celebrate today, so we took Emmett to his favorite ice cream place!  Not because he loves ice cream. In fact, he usually eats none of it, but it's one of the self serve frozen yogurt new trendy places, and he loves 'self serving' you could say ;)
here we are out on our date


We got back home to Albuquerque right as the holidays hit and kept busy and distracted with that.  After seeing our pediatrician here, it has taken a while to get into all the doctors and therapists that he was referred to.  We are glad to be getting lots of therapy and be hopefully making progress and moving forward.  For the past 6 weeks it seems we have had about one appointment a day during the week.  We have a break now and then, but that is keeping us pretty busy. Some are an hour or 2, but some end up taking all day.

Emmett LOVES therapy!  He's made lots of friends at the rehab clinic.  He gave all the receptionists plus all his therapists Valentines.  He randomly told me very happily a few nights ago that he loves "all his friends" there.  (Some day he will have normal friends his age...I hope.  But for now, he still loves doctors, nurses, Child Life specialists, therapists....and lion) Emmett is currently working with Occupational Therapists & Physical Therapists for his left sided weaknesses and Speech/Language Pathologists for help with learning to eat again.  With the end of treatment, I thought I was being realistic-& maybe even generous-by thinking it would take about 6 months to get him eating again on his own (he still has his NG tube which we give him formula through at night).  We met with a nutritionist for the first time last week, who specializes in peds hem/onc who said she's seen a kid take 4 years to learn to eat! Wowsers!  Emmett's making progress here and there, but this is probably the biggest thing we're working on right now.  The nutritionist said that chemo can affect taste buds for a LONG time afterwards in lots of different ways and as I talked about Emmett first getting the NG tube at 18 months or so, she pointed out that this means he missed major developmental milestones with eating between 18-24 months and that explains some of the issues he has with eating.  We are grateful for modern medicine because his NG tube has kept him alive through treatment and beyond, but we will be glad when the day comes that he is self sufficient again! 

Emmett's doing awesome.  He's growing a shag rug up on top and talks about facial hair all the time.  He got his first haircut over Christmas by a good family friend, but it was only long enough to really trim around the edges.  Micah just gave him his first real haircut on Monday with buzzers and scissors.  That was an adventure!

Other than that, we have just been having a blast, making the most of every day.  We have spent the last 3 weekends up in the mountains, all pretty much last minute.  We've done winter camping, sledding, visiting family and friends, hiking, harmonica playing, finger painting, going to story time, reading books, riding his jeep, swimming, talking talking talking (he has been known to ask us to be quiet so he can talk)....  We're loving being home, loving that Emmett is here with us and loving making life memorable!

 ...and he's into stuffed animals lately.  He never has been before, but now he loves collecting them on his bed.  He told me a few weeks ago "It hurts your belly to sleep on them" and asks us to "make a pocket" in the animals so he can lay down in his own bed.



 We will try to post more pictures later, but I wanted to get this up before the actual anniversary has passed and I've only got a few minutes before I hit that deadline.




 

Tuesday, January 28, 2014

January 2014 MRI Results

Emmett's MRI last week was clear -- YAY!  We've been on cloud nine since we got the results and haven't gotten around to posting the news until now (to those of you on Facebook this is old news).  Thank you so much for your prayers and faith! They had to keep us in the hospital for an extra day because of complications with the anesthesia, and we were sweating bullets the whole time, but when we finally got the good news that the MRI was clear we were ecstatic and it didn't matter anymore where we were or what we were doing.

I can't even begin to explain the anxiety that surrounds these quarterly MRI scans...many parents of kids with cancer call it scanxiety.  It's horrible.  Your whole world comes to a stop as you await the results....wondering if you've been blessed with another 3 months free from cancer, or whether it's going to start all over again....and with a much smaller chance of a good outcome.  It was especially difficult for me this time as Emmett's been complaining of random pinky pain off and on since Christmas (more on that later).

But for now we're celebrating...every day with our most precious child.  We continue to pray for many many more days and cannot overstate our appreciation for those who are praying with us.  God bless you all.



Sunday, January 19, 2014

Prayers

We have some follow ups this week and would appreciate any prayers for Emmett.  Things have been good since we arrived back in New Mexico.  We'll post more soon.

Tuesday, October 29, 2013

We're BAAAACK!

So it's been a little bit of a whirlwind...after Emmett's MRI, we were recommended to get his port (essentially a long-term IV that is surgically placed in his chest that goes straight to his heart.  This allowed the doctors to give chemo that would immediately be pumped through his body instead of being so caustic and sitting in his veins waiting to get to his heart) out before we left Boston.  And we were told by surgery that since this is routine, it takes a month or so to schedule and they only do them at their satellite location.  So yet again, we had no clue when we would be leaving, as they don't really schedule that far in advance, I guess.  They just kind of let you know a week before that your surgeon is planning a day at the satellite location, etc...   With Emmett doing well, Micah has been working pretty regularly and it was hard to have an indefinite moving date, yet again.  This would mean having to buy another flight or 2 for him to go back again to NM if we were going to be in Boston a lot longer.  Just more traveling, more expense, more delay, more up in the air.  I mean, believe me, we're good at just living day to day and not worrying what's going to happen 3 days from now.  But Micah's kind of back in the real world and it's hard to straddle both lifestyles.  We really loved the surgeon that put in his port, and since port placement means bad news, usually as a professional courtesy, they also let the same surgeon take out the port, so they are able to celebrate and do some 'happy' surgeries, too!  Even after we requested just any surgeon, they still couldn't schedule us yet.  Micah called a few times.  This was during the government shutdown.  Micah works for a government contractor that was still running off of savings (novel ideal?!) but would be running out by the end of the month.  They held meetings to explain to employees about what would happen.  This made me a little worried that maybe we wouldn't have any insurance for a while and Emmett still had a major procedure!  Micah mentioned this to the scheduler on Thursday the 10th and by Friday morning we had a place in the books for Monday morning!  And although we've hoped we would be going home, at any of these appointments we could have polar opposite outcomes, so you can't really plan ahead.  Luckily, we have had good news lately.  Monday he had surgery, Tuesday we laid low and let him recover and by Friday we had trailer packed (how on earth did we accumulate so much stuff?!?!) and Saturday we drove off.  It has all happened really fast and we were so busy tying up loose ends that we didn't get a chance to even tell people we were leaving for good.  We will be back in the spring, though, for another MRI!

This is for the City View Ward-this sign was brought to us at UNMH and hung there, flew all the way to Boston with us and has hung over our bed ever since.  I wanted a picture before we took it down.  It made me happy to be reminded of all our friends back home and some of the notes would make us laugh.  Thanks so much!   
Before leaving Saturday morning, we waited for Emmett's mailman friend, Tony, so Emmett could 'do mail' one last time.  He really goes around on the route with him (Tony even changed this part of his route so it's not too long!) and Tony lets him put the mail in the boxes.  Emmett LOVES it.  Especially because after he 'works,' Tony lets him honk the horn on the mail truck a few times.

Bye to Uncle Cris, our roommate
Another of Emmett's favorite visitors were in town for a game, so despite it being a last minute leave, we got to see them one last time, too!!  This is my Uncle Bruce and Aunt BeeJay.  They've taken awesome care of us while we've been in Boston. 
We had a beautiful fall drive through the Berkshires
Spent the night in NY so we could visit with some of Micah's extended family
Made it to Michigan, to visit Micah's family for a week.  Emmett LOVED feeding the animals
...and baby cousin, Emma.  What a doll she is!
Visited some favorite family spots
...and had an open house party for family friends!  It snowed...yes it SNOWED!! a few times that week, but it ended up being good weather for a nice bonfire party (apparently we don't have pictures of the actual fire).  This is a longtime family friend, who Emmett started calling Grandpa Gilbert, after I called him an experienced grandpa (of 13) and he started giving Emmett car rides.  Apparently Emmett heard me call him a grandpa ;)
More dear friends, the Remunds
Mrs. Buckham has been involved in the 4H and her family own most the sheep in town.
We enjoyed her coming and visiting
Emmett made a new friend, Rachel.  In fact, no surprise, really, he just wanted to 
chase around with the teenagers most the night
Saturday we got in the car again...did a lot of driving....
Drove by a lot of rest stops, but this one of course caught my attention...
For real?
Oh Texas, you're so vain, you probably think this post is about you.  
and NEVER in my life did I think I would be SOOOOOOO excited to see this sign!!!!!!!!!!!!!!!!!!!!!!!!!!!

Emmett was an amazing trooper. AMAZING.. A-MA-ZING!!!!  Didn't even pull out any electronics on the 2 days from Boston to Kalamazoo.  From KZ to ABQ, it ended up being a much more rushed trip than we had planned, and Micah needed to get back to work on Monday, so I did pull out the iPads then more, so we could sleep and switch off driving.  He complained ONE time out of all this driving that he hurt.  Another blessing.  If he had hated it, I wouldn't be able to bare to put him back in the carseat.
and it feels AWESOME to be back home!  I forgot how soft and fluffy my bed is and how cute our backyard is and how warm it is here in the fall ;)  And best of all, Emmett came back with us....

This should be its own post, but seeing as we're incredibly slow at posting these days, I'm just going to add these in here.  This is Emmett's last stay at the hospital.  It was the end of July, I believe.  

He discovered this song right as we were discharged and 
literally seconds before it was time to say bye to our nurses.
His nurse, Jen, loved doing animal sounds with him, mostly the monkey;  
the taught him an awesome monkey impression
Final goodbye....
  I'm not sure the videos do justice to this visit.  He put on quite the show for them,
which they deserved!  They've been through it all with this guy. We have loved & adored our nurses and doctors!

Tuesday, October 22, 2013

Open house in Michigan

We're hosting an open house at this weekend at Micah's parent's home on Friday, October 25th from 5-8 p.m.  We'd love to visit with anyone who's been following our story and would like to meet Emmett before we continue on to New Mexico.  There will be a light dinner including hot dog roasting over a bonfire, so bundle up! 

We would love the opportunity to thank personally everyone who's been praying for Emmett, so please stop by if you can.  See you then!

(Send me an email at micah01@gmail.com if you need the address.)

Tuesday, October 15, 2013

Party Time

Emmett's end-of-treament-birthday-goodbye-party was lots of fun.  The weather couldn't have been better!  Thanks to family and friends for helping and thanks to all of you who came and made it a party!
Leave it to Aunt Besty to surprise us with the perfect shirt for his celebration!
(When Emmett got this shirt in the mail, he went and found lion, pointed to the shirt and said "Same!")
Here's the best one of Emmett ;)
 
 When Emmett's hair started falling out, Micah shaved his head for him so they could be bald buddies.  Then over the next few months (and even just a few months ago!) we would just get emails and open them to find more friends were also bald.  Each one was touching in and of itself;  I wanted to hang up their pictures at his party and as I printed them, I realized there were close to 50 people!  You're all so sweet & never will be forgotten.  
 

Our neighbors brought this amazingly beautiful & darling cake!  Everyone loved it!
Sean & his family came!
The Woburn Fire Department stopped by and made some noise for Emmett




We hung up the 1000 + cranes outside for everyone to see
The Biggest and the smallest cranes
We printed a picture from each month of his life so far.  It made me miss his baby days!
My elementary school principal and his wife came!


Our official photographer and longtime friend, ellen, who most of you probably know already ;)

caught....
It's a good thing that ellen got some pictures of what Emmett was doing, because I saw him very little during the whole afternoon, which means the party was a success!  He had a blast running around with all the big kids and couldn't have been happier.
Emmett was a Pedal Partner for 2 great teams for the PMC, which is DFCI's biggest fundraiser.  They make posters of the kids to put along the route the bikers take.
Getting up from a little downtime





double trouble
 Apparently I found it pretty entertaining to see Micah wearing a headband
And here is the reason we celebrate-these 3 miracles!
These are 2 of the friends Emmett made in clinic;  all 3 just finished treatment this year and it was SO great to have them at our house celebrating! Our hearts and thoughts are not far from other friends who couldn't come because they're still in treatment.  We are incredibly grateful & indebted to our doctors who literally dedicate their lives to find treatments to save these kids, or give them more time. They're welcome in our home anytime (except they don't have any free time ;)  This picture makes me smile & want to cry at the same time every time I look at it.