Monday, January 18, 2016

Radiation ends, and a trip home!

Emmett's last day of radiation was 1/8/16.  He ended up doing very well throughout the whole seven weeks of treatment.  After getting his port-a-cath placed the week after Thanksgiving, he wasn't afraid of the sedation every day and actually looked forward to going in and getting his 'doctor nap' each morning.  Sometimes he would get hungry because he couldn't eat until after he woke up from sedation each day, but besides that he did very well.

The doctors want to wait six weeks before doing Emmett's next MRI to give the acute radiation side effects a chance to subside (radiation can cause inflammation of the surrounding tissues, and they want that swelling to subside before the MRI).  In the interim, they let us go home for a break.  We flew out on the 9th and have thoroughly enjoyed being back in New Mexico this past week!!  I cant't express how great it feels to be home for a while.  What a blessing and a miracle!

Emmett continues to do well clinically.  There's no indication that anything might be amiss.  We pray that's truly the case.

Emmett was excited for the plane ride back home and couldn't wait to see all his old toys and ride his jeep.  He was such a big boy walking through the airport with his own backpack that the proton center had given him as his graduation gift (he's been asking for one since before awesome it is for a child to want a practical gift for once).  We threw all his toys and goodies in his backpack and suitcase, and it was awesome.  I guess there are small benefits as your kids grow up.

However, there are downsides too.  The worst part of the flight home was when Emmett realized that the button on the armrest doesn't make the plane go up and down.  He's believed it controls the plane for years, and it's been the cutest thing ever to watch him wear out his fingers during takeoff and landing...but you have to take the bad with the good as your child grows up, and sometimes it melts (or breaks) your heart in the process...

I initially blew off his questioning, but he insisted: "No, come on Dad, tell me what the button really does".  So I eventually gave my big boy... *sigh* ...and the guy sitting behind Emmett cursed me for the rest of the flight.

Emmett had a hard time sharing the window with Clayton.

We're so excited to be home and look forward to enjoying what home life has to offer for the next month.  Afterwards we'll likely head back to Boston for some continued treatment, though exactly what that will entail is unclear.  The doctors want to be proactive in case this has spread elsewhere.  Dr. Chi listed five options we could consider before we left Boston, and we'll be weighing those carefully over the next month.

But for now, we're enjoying life and living it up in the Land of Enchantment!

Sunday, December 6, 2015

Camp Sunshine

Last weekend we had the opportunity to go to Camp Sunshine, a retreat for children with life threatening illnesses and their families.  It's located on a Sebago Lake in Maine.  It was a wonderful experience.  Emmett and Clayton both made lots of friends.  70 volunteers from across the northeast came to host the camp.  The weekend was full of lots of fun activities including swimming, ping pong, air hockey, pool, arts and crafts, Frisbee golf, miniature golf, and much, much more.  The ice skating rink wasn't frozen yet, and the lake activities were closed for the winter, but there was still plenty to do.  

Here's Emmett enjoying some time by the lake in what turned out to be a weekend of amazing weather.


Emmett and Clayton quickly made lots of friends with the counselors.  One of the most rewarding experiences as a parent is to watch other people get to know your kids and fall in love with them.  And that's exactly what all these counselors did.  They were so excited to get to know and love these kids with all these challenging illnesses.  They'd come up to us at the end of the day and tell story after story of all the things Emmett had done or said throughout the day that were so cute or hilarious...and the same thing with Clayton.  And we couldn't help but fall in love with all of them too.  Here are a few of them.

And here are some of the activities we got to enjoy over the weekend.

Clayton chowing down on popcorn.

Clayton enjoying kicking back on the mini golf course.

Emmett on the Frisbee golf course.

We had to get a picture with Mike and Sully!
And Emmett had to bring his new helicopter to camp with him (yes, Emmett found a new helicopter on his second "toy day" at radiation.  So mom, me, and Emmett are all feeling much better after letting his first one fly into the street and get run over).

The weekend at Camp Sunshine culminated in a talent show put on by the cancer kids.  It was one of the most awe inspiring things I've seen in my entire life.  Imagine these precious children, fraught with the physical and mental challenges that accompany malignant brain cancer, climbing out of their wheel chairs and walkers to break dance and lip sync to pop songs such as "what doesn't kill you makes you stronger" and "this is my fight song, take back my life song" in an effort to inspire one another to keep fighting the monster of cancer that haunts them all.  This was nothing less than the 'YouTube cancer kids' music videos come to life....for real.  And some of the kids we saw are not expected to survive much longer.  And watching them up on the stage absolutely melts your heart and breaks it at the same time.  Heroes.  Warriors.  Angels.  Precious Angels...that are facing the greatest challenges in life...greater than I can comprehend.

And to think that our precious little Emmett is one of these cancer kids.  I can't dwell on the thought.

After the talent show there was a masquerade ball.  Emmett has never been a dancer, but he threw on his green hat and ran out on the dance floor before we knew it.  And it wasn't long before he was in the middle of it all.  He ended up being the star of the show.  He told me afterwards, "at first I was nervous because I don't know how to dance, but then I realized, I'm a really good dancer."  All the counselors thought so too.  It reminded us of the days on 9 north when Emmett would hang out at the nurses' station.

What a fun, inspiring weekend.  What a wonderful opportunity for cancer kids and their families.  God bless all those who donate their time, energy, and resources to lighten the burden of pediatric cancer!  Go Camp Sunshine!

Thursday, December 3, 2015

Proton Radiation Therapy

Emmett is back in treatment.  And I can't begin to describe how sobering those words are.

Emmett started his radiation treatment last Monday, 11/23.  The treatment is every morning, Monday through Friday, except holidays.  So that means he had a short week last week with Thursday and Friday off.  He got anesthesia with a gas mask last week because he didn't have any central access (i.e. permanent IV).

It was nice to have a holiday break so soon after starting the next phase in Emmett's battle against ATRT.  It's so emotionally overwhelming to be back in treatment.  We were glad to spend a few days with family and enjoy the distraction of making a Thanksgiving dinner.  My (Micah's) parents and two of my sisters drove here with their families for the holiday.  All told, we had six kids under the age of five in the house, and it was so much fun.  No shortage of excitement and people to play with.

This week we're back to the grind stone.  He got a port-a-cath surgically installed Monday so he no longer needs a gas mask for his anesthesia.  This allows the doctors to administer the "sleepy medicine" directly into his blood stream.  This is much less traumatic for him and he isn't afraid of his treatments anymore.

Emmett has his treatment every morning.  Because he gets anesthesia he can't eat before treatment.  We spend about an hour in traffic driving to the Francis H. Burr Proton Therapy Center.  Then Emmett gets to play in the toy room for 10 minutes or so until they call us back to the pediatric staging area.  Katy and I alternate who takes him back each day and the other stays with Clayton.  When we get to the staging area we spend another 10 minutes with the nurses while they connect his tubes, check his vitals, and get him ready for the beam room.  While he's waiting he gets to play with one of nurse Rachel's iPads which he loves because they're full of games.

Then we get called back to the beam room and they wheel Emmett's bed down the hall while he's still playing on the iPad.  Then we carry him over to the table, and he enjoys changing LED lights on the "spaceship machine" or continuing to play on the iPad while they prepare him for anesthesia.  The last two days the only thing that's been able to tear him away from Minecraft is IV propofol.  Then it's a kiss goodnight, then I head out and meet Katy and Clayton and we go upstairs for a prayer and something to eat while Emmett gets his treatment.

About an hour later we get called back to the pediatric staging area where Emmett's waking up from sedation.  He usually wakes up pretty fast.  Then it's back to the car and we're on the road home.  (Sometimes Emmett talks us into stopping for a treat somewhere along the way.)  All told it's about a four hour round trip.

Friday is toy day.  Emmett is so excited to get a toy tomorrow!  Last week he chose a toy helicopter.  He was so excited to fly it when we got home and he kept asking if he could fly it outside.  I told him no, absolutely not.  Uncle Mike also told him no.  But then he asked Katy, and she said yes.  Well, the next thing you know the helicopter's in the middle of the street where it gets run over by an SUV.  We're just so glad Emmett had the sense not to chase it.

Emmett was really sad by the loss of his toy, and Katy felt so awful.  Yet I felt this was a great learning experience for a young boy...though I felt bad too.  Hopefully he'll find another good toy tomorrow. 

And this is our life until the beginning of the new year.

All said, it's not a bad life.  Emmett's condition is stable.  He's receiving treatment each day to control his disease.  He's tolerating it well.  And so far it's not making him miserable like the chemotherapy he's had in the past.

I fear the day at the end of radiation when we have to decide whether to subject him to more chemotherapy.  That will be a very hard day.  But we're not there yet, and Emmett is doing well.  And we'll continue to take one day at a time.

Sunday, November 22, 2015

Back in the saddle...

Quick recap of the last two weeks:

11/10/15:  We met with the radiation oncology team at MGH about Emmett's radiation plan.  They want to treat this spot as AT/RT recurrence.  While it's not growing quickly like AT/RT, they say given Emmett's history, it's more likely AT/RT than anything else.  They also say the spot has qualities that make it look like a secondary tumor and not a primary tumor.

They also mentioned that just the day before, Dana Farber sent word that their final review of Emmett's 8/27/15 MRI revealed two spots that are enhancing slightly.  There's no bulk to be seen here, but the nerves in these areas are picking up contrast.  Looking back in time, these spots have been picking up contrast since 2014, so whatever is happening here is nothing new (good news -- we think).

These spots are very close to the nodule of concern (within millimeters) and could be included in the radiation field and treated.  They may be part of the nodule (best case) or they may represent metastasis.  Dana Farber asked MGH to closely examine these spots with a KISS (?) image sequence on their MRI the next day.  They also wanted MGH to carefully screen the rest of Emmett's brain and spine to make sure there were no other areas of enhancement, suggesting possible metastasis (this scenario would beg for systemic treatment first instead of focal radiation treatment).

They want to treat Emmett with 30 days of low dose radiation instead of 5 days of SRS radiation.  The main reason is because Emmett got 30 days of treatment last time and he tolerated it very well and it appears to have controlled his disease.  They can't predict if SRS would have the same effect on his tumor, although they believe the SRS and 30-day dose are "biologically equivalent". 

11/11/15:  Emmett has his radiation planning MRI at MGH.  The preliminary word from the fellow was that they do not see any other spread of disease (great news), that the two additional areas of concern are still showing enhancement, and the nodule is showing a small increase in size (approximately 1 mm in each direction).  This is on par with the last few MRIs (i.e. the nodule is slowly growing).  We were hoping for a reduction that would lead the team to reconsider the need for treatment...but at the same time, were very glad to see that things hadn't changed much from his scan in August. 

11/12/15:  Emmett had his radiation planning CT.

11/16/15:  We heard from the radiation oncologist on the radiation plan.  They plan to include the two additional spots in the radiation field.  Because they're so close to the nodule they can easily be included in the radiation field.  And the radiation field will still be quite small.

When asked about the size of the nodule compared to Emmett's last MRI, she said that because they did a more detailed image sequence this time with 1 mm slices, there's no fair baseline of comparison to say exactly how it changed from last time.  They call it "no appreciable change".  She said that it might have grown slightly, and that she's sit down with us to go over the images in the coming weeks, but her travel schedule has prevented that from happening yet.

11/17/15:  We met with Dr. Chi at Dana Farber.  This is only the second time we've met with her since coming to Boston in September.  It was insightful to get her perspective.  She said that MGH wants to treat this really aggressively, Dana Farber wants to be more conservative, and at the other end of the spectrum you have Children's Hospital of Philadelphia which suggests we watch and wait (though we haven't talked to them since Emmett's last MRI).  She was a little concerned when she heard that Dr. MacDonald at MGH was going to reduce the inner ear radiation field from 50 to 45 Grey, and she wanted to talk to Shannon about that.  Dr. Chi apparently thinks we should give the full dose, even to the outlying areas.  So they need to get on the same page....especially since radiation is supposed to start tomorrow.  Likely this will result in a delay in the radiation start date.

Chi also talked about options for follow-up, systemic treatment at the conclusion of radiation.  At this point she's not in the camp that we MUST do systemic treatment after radiation, though it sounds like she would recommend it.  But the question is WHAT -- there's no protocol for recurrent AT/RT.  Essentially you're on clinical trials exploring new drugs and options.  Thankfully there is a new drug that's shown some promise against AT/RT that will be available in the next month or so.

Our perspective:
  • While we were hoping for a miraculous reduction, we are encouraged and thankful that whatever this spot represents is progressing very slowly.  In fact, we DO consider this a miracle.  AT/RT doesn't creep back; it explodes back.  So why is this growing so slowly?  Maybe because Emmett's body is recognizing it and fighting it.  Maybe it's because of all the prayers.  We like to think it's a little of both.  And throw in radiation, hopefully it runs away with its tail between its legs.  No disease has returned where Emmett was radiated.  Maybe radiation's the silver bullet.
  • We're still very anxious about commencing radiation treatment...and for several reasons.  It's scary stuff.  It's lots of sedation.  It comes with side effects, and only some of them are known.  But probably the most overwhelming aspect is the fact that by commencing radiation we're admitting that Emmett has least in some fashion.  We're stepping into the ring watch our child fight cancer.  And that's my biggest nightmare come to life.
As we mentioned in our last post, we have so so SO much to be thankful for.  We're in a great place in so many ways, and continue to feel very blessed.  The last two years since Emmett finished treatment have been absolutely wonderful.  And Emmett's still doing wonderfully.  He's loving and enjoying every day so much.  And we have reason to hope he'll continue to do well for a very long time, and ultimately will beat this disease.

And those are the things we will focus on this week as we commence radiation and celebrate Thanksgiving.

Tuesday, November 10, 2015

The Glad Game

We have a big week ahead of us here in Boston.  We meet with the MGH doctors for radiation planning.  In some ways it feels like we're stepping back in time three and a half years to when this whole thing started with Emmett...and that thought is terrifying.  However, we're not in the same place now that we were then.  We're far from it.  And it's been helpful the past few days to count the ways things are better now than they were then.

We're already connected with the best doctors for Emmett's cancer

Whatever this is, it's growing very slowly.  Emmett's tumor was fast growing before, at least at one point.

We're discovering whatever this is at the very earliest stage of visibility instead of being rushed into emergency surgery when Emmett stopped walking.  This provides the doctors the opportunity to be methodical and deliberate.

There are new treatment protocols that are showing promise against atrt

I don't have fears about losing my job like I did last time.

Emmett is doing wonderful clinically.

Emmett can communicate and tell us what he's feeling now that he's older.

This may not be cancer.

We've been in a much worse place than this before.  We've been told there's nothing left to do and your son likely won't make it.  And Emmett pulled through.

Yes, things are much better now than they were then.  And we're hopeful that this isn't a big deal at all.  We appreciate everyone who has been praying and fasting for us the last few weeks.  The ward back in Albuquerque fasted for Emmett last Sunday, and more people fasted this week.  And we've felt the strength of those prayers!

Tuesday, October 27, 2015

October Update

Mass General has scheduled Emmett for proton radiation starting 11/23.  Before they can begin radiation they need a new MRI combined with a CT.  These two scans fused together will allow the hospital to plan how they will administer the radiation (i.e. what shape should the radiation beam be, what angles should it come from, what structures will they have to go through, etc.).  This should also let them determine what the expected side effects will be.  We haven't committed to this treatment yet, but to learn the side effects you have to at least go through the planning process.

If Emmett's spot hasn't grown in size, they will probably recommend stereotactic radiation.  This will mean only a few treatments to zap a small spot.  If Emmett's spot is larger, they may recommend a larger radiation field and more treatments.  They have him on the schedule for 30 treatments, but will cancel the ones that are not needed.

As I mentioned in my last post, the doctors have seen spots get smaller on their own without treatment on rare occasions.  They still don't know if this spot represents cancer.   But they don't like to take chances.  And if Emmett's next MRI on 11/11 still shows this spot, they will definitely recommend we go through with radiation, and perhaps other follow up treatments.  We have taken Emmett's treatment a different path than they have recommended before, though, so we will see what happens this time.

Emmett continues to do wonderfully clinically.  From all appearances he's your normal happy, healthy boy.

We're praying that Emmett's body addresses this spot on it's own, whether it's malignant or not, such that his next MRI will lead the doctors to consider a different course of action.  We are also praying that if Emmett needs more treatment, that his mind and his body will be protected from any ill effects.

We invite any and all to join us in this prayer.

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.