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.

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.

Sunday, April 5, 2015

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!

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.