Waiting in Boston...

Executive Summary:

1.  The doctors have a identified a slow growing mass, but do not know what it is.
2.  Please pray that Emmett's lumbar puncture comes back clear.
3.  Pray that the mass in question manifests itself as something that is not cancerous.

So we met with the team in Boston this week. In reviewing his prior scans they were able to see something in this location in his April, February, and January MRIs (which were all done in Boston -- how did they miss it? #RadiologistsShouldntFacebook&ReviewMRIsSimultaneously).  So it's been there for a while.  Since his scan in April, it has only grow perhaps 1 mm.  However, nothing showed up in this area in his October 2014 MRI.  So there has been significant change over the course of a year.

This news is both encouraging and discouraging.  The good news is that whatever this spot represents, it's slowly growing.  AT/RT is anything but slowly growing as evidenced by the time that Emmett's tumor grew back in 10 days after his first resection in Boston.  A 1 mm change in four months is not much.

The downside is that we've confirmed that something is definitely in this area, and growing...however slow.

The challenge is that there's no good way to tell what it is.

Though the neurosurgeon hasn't weighed in yet, the oncologist thinks this spot is inoperable...so we can't get a biopsy. 

The next best option is to do a lumbar puncture to take some spinal fluid and look for cancerous cells.  Emmett had his LP yesterday and we're anxious awaiting the results. 

The third option is to wait and see what happens.  Does the spot continue to grow?  Does Emmett start showing symptoms?

Options for treatment aren't great.  Emmett's still too young for full brain radiation.  Without confirming it's cancer, probably the only thing they might consider is stereotactic radiation.  This is a "gamma knife" procedure where they send low energy radiation beams from many angles that all converge at the spot in question.  This way the brain gets a low dose overall, but the treatment area gets a high dose.  Stereotactic radiation only works for spots that are small (less than a few cm) -- if we wait too long, it may not be an option.  One upside to stereotactic radiation is that it would not preclude Emmett from full brain radiation down the road, if needed for future treatments.

We don't know the risks for stereotactic radiation in this part of the brain yet.  A radiation team at Dana Farber is reviewing Emmett's case and we hope to meet with them next week.  We also plan to consult with the radiation oncology team at Massachusetts General Hospital where Emmett received his proton radiation.  If the risks are significant, it would be hard to justify if we don't know for sure this is cancer.

We hope and pray that no further treatments are necessary!  As minimally invasive as radiation might be, the side effects may be significant, and we hope that the doctors come to the conclusion that everything is okay and nothing else is needed.

On the upside, Emmett had an LP and a PET/CT scan back in January which both came back clear.  If the spot existed then, and the tests showed no evidence of cancer, we're hoping the same is true today.

Please keep Emmett, our family, and his doctors in your prayers as they work to determine what this spot is and the best path forward.  We're praying specifically that his lumbar puncture accurately reflects no cancer in his brain and that this mass ultimately is determined to be non-cancerous.

We greatly appreciate your prayers and faith!

MRI Results

     Emmett had his routine MRI at UNMH on August 27.  They have noted a little spot in his brain stem, is my understanding of the location.  Nothing has ever appeared in this location before and it's not his usual area, which makes me think it could be nothing.  It's 7x5 mm and when we talked to our team in Boston, they looked back on his April MRI and were able to see a teeny tiny spot there.  So it's possibly something that is growing very slowly or something that has always been there and just hasn't shown up in the particular sequencing they've done before.  Seeing as the whole point of routine MRIs is to look for tumors, any difference they see from one scan to the next is written in the notes as 'concern for malignancy.'  While unsettling to actually read those words, it doesn't necessarily mean recurrence, they're just doing their job and noting absolutely any difference as something to look into.
     The Boston team has asked us to come their way for some follow up testing.  We fly out on Saturday.  We will stay in Boston until the team is confident that everything is okay.  It could be a matter of days, weeks, or longer. What makes this feel more urgent is that we're jumping on a plane and heading across the country again, but mostly that is our team being picky.  They want to perform an LP and would prefer to see the sample and test it themselves, rather than just getting results from another institution.  (A lumbar puncture is where they put a needle into his spine and take out some spinal fluid to see if there are any cancer cells floating around in it.) This is why we find ourselves taking off so suddenly.  Dana Farber also has their brain tumor conferences on Thursday, so they will discuss Emmett's case then.  We are curious to see what his surgeon says;  she seems to be the one that is less wishy washy and more definite on her opinions.  (Last time this happened she was out of town for the week.  When she finally responded to concerns about the spot they found she essentially said it was ridiculous and didn't know what all the fuss was about.  #bedsidemannerF  #waytoendaconversationA+)
     We have been down this road 2-3 times now since he finished treatment just over 2 years ago and it has always turned out to be nothing of concern.  So we are just heading down that road again right now.  I honestly suspect we will be back in a few weeks, but you never know.  We don't want to cause too much alarm and consider this kind of routine still, but of course prayers are always welcome and appreciated!  We know that's what has gotten him this far!

This is for Jess

Since returning to Albuquerque we try to have as many family adventures as possible...and our official family definition of an adventure is something that's "a little bit exciting and a little bit scary".

One of our favorite activities is hiking in the Sandia foothills.  The other day we were out hiking and came across a scary scene.

I've wanted to see a rattlesnake in the wild since I started hiking the Sandias in 2011.  How lucky I was to have my whole family with me when we came across this mammoth snake in the middle of a meal!  The downside is that it puts you between a rock and a hard place: here you are with this amazing snake that you've always wanted to "play with" in the wild, however, you've got your two young boys watching your every move, and actions speak louder than words.

So you have to compromise.

"Emmett, that's a dangerous snake.  If you ever come across a snake like this, stay far, far away from it.  Whatever you do, never, EVER do this, and never do this, and never try this."

After a few minutes you realize your four-year-old is getting confused by your contradictory behavior.  So you decide to send him further up the trail with your wife while you stay behind to make sure the "snake doesn't follow you".

Alright, enough of my parenting advice for one post.

I would post a second video but it might be a little incriminating.  Suffice it to say that the snake's rattle does work...which allows me to rest easy knowing that other hikers will receive an acoustic warning if they get too close to this deadly beast ;)

Unfortunately, in the process of making that discovery I may have painted a target on myself for this particular rattlesnake...the hiker with the large backpack, white hat, and cheesy grin.

Clayton was all laughs and giggles the entire time.

Emmett, not so much.  I believe he wound up sleeping in our bed that night.  So I got what was coming to me...from Emmett, at least.  The rattlesnake may get his chance another day.

A dream came true for me today

I've always wanted to be that stranger.

I was in the airport this morning waiting to board a plane to Kansas City for a business trip.  As I was waiting, I happened to glance over toward the gate where people were lining up to board the plane, and what did I see?  Someone wearing a blue T-shirt with the words 'Joy, Hope, Strength' next to a family with a little boy also wearing a Make-A-Wish T-shirt.  Clearly there was a ill child on his way to Florida for a Disney adventure.

A year ago it was us, with Emmett, standing in line at that very same gate waiting to board the plane to Florida for Emmett's Make-A-Wish trip.  It all came back so quickly -- the Make-A-Wish send-off team, the counter attendants that gave Emmett a grab bag with a toy Southwest Airlines plane that made SO MUCH noise, pilots who were excited to sit us in the cockpit and take pictures...and the joy of a week making memories in Florida during a time that was otherwise fraught with uncertainty.

I still remember vividly the day we returned home from that trip.  We were collecting our luggage from the baggage carousel when an elderly gentleman, obviously aware of Emmett's apparent condition, stopped to talk to us briefly.  And then he bent down to exchange a kind word with Emmett, and in so doing, wrapped Emmett's hand around a $20 bill and told him to go bowling.

 

These experiences were always so touching and strengthening to Katy and me.  And so exciting for Emmett!

 

And today I got to be that stranger!  Finally!  Katy will tell you how I've longed for this day...to personally reach out to a family with a sick child, in the moment, as others strengthened us.  It brought sweet tears.

 

I told the boy to take his family out for ice cream with the money...but then remembered afterwards that where he's going, the ice cream is free.  And you can have it for breakfast.  Luckily he looked like a boy with a healthy appetite for toys -- I'm sure he'll find something to spend it on ;)

 

Ice Cream Palace at Give Kids the World

 

How thankful I am for all those who have blessed our lives since Emmett's diagnosis.  And how grateful I am for the opportunity to do the same for others who are in need of God's love.

 

I can't say if it's sweeter to be on the giving or receiving end -- both touch the soul very deeply.  And it's wonderful. 

May we all experience the joy of being that stranger.

Happy Easter

     Usually Micah is more inclined to write the more thoughtful posts and I just like to post pictures and such, but today while watching General Conference, I was really touched by Elder Jeffrey R. Holland's simple but beautiful talk on our Savior and how Easter is the most Sacred Day of the year.  Although most of my thoughts I like to keep close to my heart, I felt I would be ungrateful for our Savior's magnificent gift if I did not share something today.

     This past January/February while we were stuck in Boston because of appointments and weather, I read this chapter over and over (because let's be honest, it's short) but mostly because I loved this simple and true verse:  "But there is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ."  (Mosiah 16:8)  I love the phrase the sting of death is swallowed up in Christ because it put into words my feelings towards Emmett's life since he was diagnosed.  I never have really felt anger towards his diagnosis, nor that it was a punishment from God.  I just felt that it was life happening to us like it does to everyone and that if we lost him, I couldn't imagine how much I would miss him, but that death really isn't an end and because of Easter Sunday, I have no doubt it would just be separation for a time. I don't pretend to know what it is like to actually lose a child-I know that thinking about it is absolutely an entirely different thing than actually experiencing it.  But between that small verse and Elder Holland's talk today, I realized how grateful I am for today, for our Savior's triumph over death because my knowledge of that is what has kept the last few years from being such a heavy weight on my chest or a depressing chapter of life.  I've always felt that as his mother, I of all people should have had anxiety and depression through this all and I haven't...and I have felt guilty because of that.  Elder Holland's talk today painted such a beautiful and simple picture of what Jesus Christ has done for us and put into words my feelings of hope and made me feel grateful for this blessing of hope instead of guilt.  Happy Easter to everyone today!

Here are my Easter Joys!

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!

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.