Saturday, October 3, 2015

Radiation Option

So we heard from Dr. Chi this week that MGH will consider Emmett for proton radiation.  We should hear from them to setup a consultation any day.  We also met with the radiation team at Dana Farber for consideration for photon radiation.  (If MGH will do proton, however, that's where the doctors would send us because it has fewer side effects.)

It sounds like the doctors are getting on the same page that irradiating this spot is what we should do.  We're not sure how we feel about it yet.  Well, really we are sure - we don't want to do it!  Emmett's brain has not been irradiated yet, and we would like to keep it that way unless absolutely necessary.  We heard from Dr. Fisher at the Children's Hospital of Philadelphia earlier this week and he sounded like he would recommend observing this spot instead of treating it at this point.  He also believes that stereotactic radiation against a recurrent rhabdoid tumor is not effective, so why subject Emmett to the side effects of radiation?  Especially when we have no idea what this spot represents? 

"...but so great were the confusion and strife among the different [institutions], that it was impossible for a person young as I was, and so unacquainted with men and things, to come to any certain conclusion who was right and who was wrong."  Sound familiar?

Thankfully another MRI would be required for radiation planning since it's been over a month since Emmett's last scan.  I asked Dr. Chi what she would recommend if another scan showed a reduction in the size of this spot.  She said that while not expected, a reduction in size would give them pause to reconsider their path forward.  I then asked her whether she has ever seen a tumor reduce in size without any intervention.  I had asked her this same question three years ago and her answer was "no".  This time however, her response was different: "Funny you should ask that today Micah, in our tumor board meeting this afternoon we reviewed the case of a girl who's latest scan showed a significant reduction in the size of her spot, and that was completely unexpected."

We do believe in miracles.  We hope and pray that Emmett's body will find a way to address whatever exists at this spot in question, be it inflammation, infection, or malignancy, such that the best path forward for our Brave Little Lion becomes clear.

We're thankful for the opportunity to watch General Conference this weekend and pray the Spirit will bring peace and comfort to our family as we prepare for the decisions ahead.

Tuesday, September 29, 2015

Orthopedic, neurosurgery consultations

Yesterday we met with the orthopedic and neurosurgery teams.

The orthopedic team was asked to evaluate Emmett for spinal instability resulting from spinal surgeries and radiation treatment.  I've been anxious about this consultation for several months now.  We would hate to put Emmett through a spinal surgery that might limit his mobility and ultimately change the way his body functions.  It was hard when he was 18 months; it would be so much harder now that he's older.  He understands so much and asks such probing questions. 

Thankfully the orthopedic team doesn't think that anything is needed at this point - hooray!  Hopefully that message is repeated for years to come.  They did suggest he stay away from contact sports, however.  Tennis and golf were his recommendations.  What a 'coincidence' that those are the two sports I play the most!  I guess I was meant to be a pansy.  Incidentally, we brought tennis rackets for Katy's birthday yesterday to have here in Boston.  Emmett got so excited and begged us to sign him up for tennis instead of soccer.  He asked me to go play tennis with him no less than eight times today.  Hopefully it sticks!


The consultation with neurosurgery was also insightful.  We've been waiting for weeks to hear what Emmett's neurosurgeon thinks about this spot in his brain stem.  She is concerned about it.  She thinks it would be risky to get to surgically, and the risks would be great.  She said she recently went after a similar spot on another patient, and in the end the tissue wasn't good enough for a conclusive biopsy, so it was a lot of risk for a little benefit.  I assume if this spot started growing quickly she might reconsider.  But for now surgery is off the table.

She did recommend we proactively treat it with stereotactic radiation as the oncology team has discussed.  She thinks that the side affects will be minimal for this location.  I guess they irradiate kids with tumors in this vicinity regularly, and in her experience the side affects are very minimal. 

Keep in mind that this is a surgeon speaking for a radiation oncologist, so take everything she says with a grain of salt.  I'm anxious to talk to the radiation oncology team to see what they believe the risks and benefits are.

Our primary team still hasn't heard back from Mass General on options for proton radiation treatment, which is what I believe our primary team will recommend.  I think they have options for photon radiation locally, but proton is the preferred option.  So we're still waiting.

So that's where things stand today.

We appreciate the outpouring of love and support we continue to receive.  And we especially appreciate all the prayers.  So many people have been involved in bringing Emmett to where he is today.  We love and thank you for all you do for our Little Muncher!

Saturday, September 19, 2015

Lumbar Puncture is clear!

For those who didn't see this yesterday, let me re-post it here:

Emmett's lumbar puncture came back clear; yay!!! A wonderful tender mercy, and on his fifth birthday. The clear LP doesn't necessarily mean this mass isn't cancer, but it is a step in the right direction. We are all feeling very thankful...and are grateful for a weekend of good weather in Boston. 

Emmett wanted to go to the beach this weekend, so we headed to Wingaersheek yesterday and went to Walden Pond today.  The weather couldn't have been better and made for some wonderful family time.  Clayton crawled right out into the water and would have kept going if we hadn't stopped him.  He screamed when we finally pulled him out.  I'll add some pictures later!

Thursday, September 17, 2015

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 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!

Monday, September 7, 2015

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!

Monday, August 10, 2015

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.

Sunday, July 26, 2015

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 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.