Thursday, November 27, 2014

Happy Thanksgiving!

Our hearts are full to the point of bursting today.

Two years ago our family was at the brink of devastation.  Our only child was diagnosed with a rare and aggressive cancer and his prognosis was dismal.  In addition, because of the potential genetic nature of his cancer, our doctors had told us we might not want to have more children if we were carriers.

After experiencing the incomparable joy that children bring into a family, the thought of losing what might be our only child was absolutely crushing.  The early December day when our doctors told us there was nothing more they could do for our child was the darkest of my life.  The holidays that year, overcast with fear and grief, were anything but 'merry' or 'happy'.

Thankfully, we believe in faith, prayer, priesthood power, love, miracles, and mercy.

I don't pretend to understand God's will.  I cannot explain why one child is allowed to stay and another taken.  It breaks my heart to think of those children we know who have lost their battles with cancer and those who are still fighting for life.  But all I know is that on a Thanksgiving Day when we may have been doing our best to celebrate the holiday with no children, today we've spent with two beautiful children who we can hug, cuddle, wrestle, kiss, and love.  And it's absolutely the best thing in the world.  Words are inadequate to express my feelings.  Every day together is a miracle to be treasured and cherished, and we have been blessed with so many.  And there's a prospect of more.  Today represents nothing less than our biggest dream come true.

How grateful, humbled, and thankful beyond expression I am to a Father who has allowed our first son to stay, and who has blessed us with another, Clayton Sean.  And how thankful I am to all those who have joined us in fasting and prayer to importune the Lord on behalf of our family.



And so...with the most energy and vigor I can possibly write words that do not express the least part which I feel, let me declare that this IS truly a Happy Thanksgiving!  Evening the happiest!  And we look forward to celebrating the Merriest Christmas and Happiest New Year of our lives in the coming month.  We hope the same is true for you.

Hug your loved ones and tell them how much you love them today, and everyday.  And thank the God of heaven for each blessing you receive.

God bless you.  And Happy Thanksgiving!



Sunday, November 9, 2014

Stephen's Run 2014


Unless the new baby decides to surprise us that day, we'll be at Stephen's Run/Walk this year.  This 5k is in memory of Stephen Peterson, a sweet boy from a neighboring church congregation who passed away of the same cancer that Emmett was diagnosed with.  In the season of Thanksgiving, what a wonderful opportunity to give thanks for all the children who have touched our lives, past and present.  This is a low key activity--bring the kids and the strollers!  There is no registration fee, but donations will be accepted to benefit Make-A-Wish of New Mexico (which recently granted Emmett's wish--more on that in another post). May God bless the Peterson family and all others who have lost children.  www.stephensrun.org

Friday, November 7, 2014

Hard to believe...

that this was Emmett just 2.5 years ago!  I just looked at this and can't believe he looked so bad, but at the time you just get used to it and it just becomes the norm.
Look how far he's come!!



Emmett had another good MRI in October! (apologies to those waiting, as we didn't get results til a few weeks later and actually still haven't heard from Boston!)  We'll be in Boston for his next MRI in January and in the meantime are looking forward to holidays at home with a new baby to snuggle!  Emmett is very excited and is only considering the possibility of it being a girl and says he will be sad if it's a boy.  (We didn't find out the gender).  At any rate, we're sure he'll be a great big brother...except when he's not ;) 

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.