Sunday, June 15, 2014

Happy Father's Day

For those who missed the Facebook post from this past week:

Thanks for the birthday wishes everyone. It has been a great day. We're in Boston this week for a follow up MRI for Emmett. In April the doctors saw a spot that they were concerned about and wanted to see us again in 6 weeks. We've been very anxious. Everything looked stable on his scan this week, praise the Lord! Our hearts rejoice! I'm also pleased to announce that Emmett will be a big brother this Thanksgiving. Life couldn't be better for a family that has been through so much these last two years. We will continue living in the moment and treasure every one. And we continually thank God for the blessings and miracles we receive every day; especially the ones that allow us to watch our precious son grow up.
 
 

Thank you all for your continued prayers and faith on behalf of our family.  God bless, and Happy Father's Day!

Tuesday, April 29, 2014

Six Month Folllow Up MRI

This month we were back in Boston for Emmett's six month follow up appointments.  The MRI was on Wednesday, 4/23/14.  That afternoon we had Brain Tumor Clinic in the Jimmy Fund Clinic where we met with all Emmett's medical teams.  They gave us the word that his scan looked stable and we heaved a huge sigh of relief.  No message is sweeter than a good MRI report.

Well, the next day we received a call from Dr. Chi.  Turns out that when the attending radiologist finalized his MRI report there was additional information added.  A spot on the MRI that has been reported on previous MRIs as a tethered spinal cord showed up brighter on this scan than it has in the past.  Exactly what that means is uncertain.  This imaging sequence consisted of smaller image slices than his previous scans, and it's possible that these additional slices could have increased the brightness of this spot.  But there's also the possibility that this spot could be tumor.

At the current juncture there's nothing to do but hurry up and wait until his next scan -- no other imaging studies will provide more information about this spot, and because it's on the front of his spine it would be difficult to get at surgically for biopsy.  They decided to bump his next scan up a month to June, and they requested we do it in Boston again.  (This spot didn't show up on his January MRI in New Mexico, but it has appeared on some of his previous scans in Boston (UNM has lower resolution MRIs than BCH)).

They also noted some concerns about spinal instability (similar to scoliosis) that was more pronounced on this scan than his previous scans and that they may have to address in the future.  How far down the road is uncertain.  They also noted some hormonal imbalances which they believe are due to scatter radiation to his thyroid which they may need to address soon.

We knew there would be side effects to the treatment.  We decided two years ago we were willing to live with the side effects in an effort to save his life.  Still, it's painful to consider the things we've allowed to be done to our baby...and the decisions we've had to make for him.  Wouldn't wish it on anyone.

We are so thankful for the many blessings and miracles we continue to see every day.  Every single day is a miracle.  We are so grateful that we've made it through another MRI without being rushed into emergency surgery afterwards.  We're so thankful Emmett can walk, talk, laugh, and jump...and talk back!  We're so grateful for and entertained by the personality that he continues to develop.  We're so thankful for the opportunity to be stewards of one of God's most precious children no matter what the mortal time frame.  And we're so grateful for the knowledge that families are forever!

We deeply appreciate the support and faith of friends, family, and neighbors all around and invite you to join us in praying for Emmett's continued health and strength over the next two months.  God bless you all!

Emmett woke up to find snow his second morning in Boston.  A cheesy grin spread over his face and the one word he said was, "Finally!"  Guess he must get pretty disappointed checking for snow every morning in Albuquerque.

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.)