Sunday, February 15, 2015

Good News

Since the last post we have remained in Boston as Emmett underwent further testing ordered by the oncology team (PET/CT, repeat MRI, and lumbar puncture).  Oncology finally sat down with us on Friday after considering all the results and consulting with the neurosurgery team.  The subject of concern is a spot on his spine that has historically been identified as a "tethered spinal cord".  In previous scans the spot has measured 2 mm.  On his 1/28 MRI the spot measured 6 mm and enhanced with contrast.  This raised the possibility of tumor recurrence and warranted further investigations.

You can imagine our hearts skipped a beat with this news.  The emotions that come with a potential cancer recurrence are overwhelming.  We appreciate all those who remembered Emmett and our family in their prayers and fasting on 2/1.

On 2/2 Emmett had a repeat MRI on the spot in question.  This was a diffusion MRI with FIESTA imaging to determine if the cell structure in this area looks like cancer.   The results came back that it didn't look cancerous.  Also, this scan measured the spot at 4 mm down from 6 mm the previous week.  This difference is close to being within the measurement resolution of the scanner.  When comparing this spot to Emmett's October MRI, the oncologist could not tell a difference.  These are all very encouraging signs.

Emmett's PET/CT came back negative as well.  This means that the glucose uptake in this area was within the normal range.

Then Emmett's lumbar puncture to look for cancer cells in his spinal fluid also came back negative.

Finally, the neurosurgery team (Dr. Goumnerova) weighed in and said that she would not consider biopsying this spot (and likely couldn't), and that after reviewing the scans she didn't understand what all the fuss was about.  As anxious as we always are to hear from Dr. G, we were very excited to hear this feedback.

So oncology cleared us to return to New Mexico on the condition that we come back for a repeat MRI in two months instead of the normal three. Yay!!!  We couldn't be more excited and will be on our way to Albuquerque as soon as the blizzard lets up.

We continue to count the miracles we see and will add this to the list.  We are strengthened by the sustaining power of faith as we walk the path God has placed before us and express sincere gratitude for all who continue to pray for us.  May God bless you all.

Golly this winter is treacherous!

Good thing Aunt Carrie made us awesome hats to keep warm!

Thursday, January 29, 2015

Plea for Prayers

Emmett had a routine follow up MRI yesterday at Boston Children's Hospital.  The doctors noted a spot that is both bigger and brighter than on previous scans.  This is the same spot that Emmett's doctors have been describing as a "tethered spinal cord" since Emmett's last spinal surgery in 2012 and it has always been discussed as a location of post surgical change and not a spot of potential tumor activity.  But in April they noted a slight change from previous scans, but the repeated scan in June showed no change.  Everything was also clear in October 2014.  But yesterday's scan shows an increase in size in one dimension.

It's impossible to tell exactly what it may be at this point.  Could be recurrent tumor, could be post surgical change/scar tissue...but why no significant change in size until now?  Given how fast Emmett's initial tumor grew, it would be surprising to see something as slow growing as this.

The spot is located on the front of his spinal cord which makes it very difficult to get at surgically for biopsy.  Emmett's neurosurgeon is out of the country currently and was not available for consultation yesterday.  Hopefully we'll hear from her next week.

In the meantime, the oncology team has requested some additional imaging studies as they try to learn more about this spot.  A PET scan is scheduled for tomorrow, and another MRI is scheduled for Tuesday.  The PET shows how actively cells pick up glucose and gives an indication of whether an area is growing or not.  Because Emmett's only previous PET was taken at a time when there was no tumor activity, we do not know if Emmett's tumor shows up hot on a PET scan when the cells are active (the previous scan showed everything was cold).

We're doing our best to move forward with faith in the face of uncertainty.  We take comfort in the many prayers and blessings that have been offered for Emmett and are strengthened by the many miracles we have seen thus far in his treatment. 

We would appreciate your faith and prayers as we progress through the coming days and weeks.  We will be praying that Emmett's doctors will be sensitive to God's Spirit in determining what this spot represents and if it needs further treatment....and what the next steps should be.  And that the God's Spirit will sustain our family as we walk the path He has placed before us.

We welcome all to join us in this prayer.

Emmett waking up to snow in Boston!

The Lion shoveling and playing in snow!

Warming up afterwards.

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.

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.