A Very Touching Gesture

To underscore just how remarkable it is that Emmett responded to his experimental medicine, I wanted to share a touching experience from Emmett's clinic appointment last Friday.

After a brief visit with our primary oncologist when we first arrived in clinic, she left the room briefly to go get something.  When she returned, the first words out of her mouth were "Without violating any HIPAA regulations...." -- I can tell you that Katy and I were both confused at this point and didn't know where this was going -- but then she continued "....without violating any HIPAA, I sometimes talk about the goings-on at work with the people on my street.  Naturally, a lot of people are anxious to hear how work is going for a pediatric oncologist...(which is a nice way of asking how the kids are doing).  Often there's not a lot of good news to share.   But this past week I couldn't help sharing how well things were going for 'unnamed patient X'.  The group of women I shared Emmett's news with were very excited to hear it....and they wanted you to have this!"  At this point we saw what she was holding in her hand:  Visa gift cards totaling $150 dollars!  Holy cow?!  Our hearts were touched deeply by the kindness of these women, an act of service bestowed anonymously upon a family they had never even met or seen!  Five years after Emmett's initial diagnosis, we continue to witness the goodness and generosity that abounds in the people everywhere.  It always catches you by surprise and moves you deeply.

A heart felt thank-you to everyone who reaches out in love to serve and bless those around you, in whatever forms your service takes.  Those who receive your kindness are blessed and strengthened beyond measure, and they feel the love of God through you.

The other take away from this experience is how remarkable Emmett's response to this medicine is to our medical team.  Clearly this is not everyday news, clearly this is something rare, something so novel that even the the doctors are anxious to talk about it and share.

And to me this reconfirms, that yes, this is a miracle!

Let me also add here how much we love our primary oncologist in Denver.  She is so real, so personable, so amazing.  This story illustrates so perfectly how human she is and how much she cares.  She also has three kids and they're about the same ages as ours, and I think helps her understand even more perfectly what we're going through.  And you don't always find that in an oncologist.  She's absolutely amazing and we consider her to be another one of the great blessings in our life!

"Emmett Responded!!!"

"EMMETT RESPONDED!"  EMMETT RESPONDED!!!!!!  Those were the words of Emmett's visibly-shaken oncologist as she called to us across the waiting room after Emmett's MRI today.  Forget patient confidentiality, forget protocol, when there's news this good to share, it just can't wait!!!

What followed was a flurry of hugs and tears...amid feelings of shock and awe...as we tried to process everything.

This was not the news she was expecting to give us today.  As far as we've read on social media, no other AT/RT kids have responded to the drug that Emmett's on -- no, not one...and many have tried it.  Our oncologist was expecting to give us bad news today -- but her world was rocked by the fact that Emmett's tumor shrank 30% in the last two months, and so was ours!  And we were all completely overcome.

This is unprecedented...and this news will reverberate through research institutes, drug companies, and ultimately the treatment protocols of many kids in the future as researchers subdivide and find targeted therapies for different AT/RT subgroups.

But all of that is way beyond me.  All I know is that we saw a miracle today.  And I told the doctor so.  And she agreed...and said that her faith was restored today.

There really is no other explanation.

We'll see what the road ahead holds.  We pray that Emmett continues responding and his tumor continues shrinking in the coming months.  He's truly in uncharted territory now...but territory we are very grateful to have to navigate.

We believe in the gift of...healing.  How thankful we are to all those who have been praying and fasting that Emmett might receive this gift!  God bless you all for your prayers and faith!

Today we feel so thankful, so grateful, so humbled, and so blessed...even beyond human expression.   Words truly cannot express the smallest part which we feel.  So instead, let us glory in the Lord together, that he should allow this great miracle to come into our lives, replacing our tears of sorrow with tears of joy!

Big day for Emmett

Emmett gets his first scan today after starting this new medicine.  The results of the scan will determine our future.  We are very anxious and are praying for encouraging results!

Emmett did get some good news last week when we had his follow up with neurosurgery. They said his spinal stability was looking a little better!  We were very excited!

Praying for more good news today.

Happy Birthday Emmett!!

Emmett turns 7 today!!!  And we are celebrating!  Katy took him to get birthday donuts this morning and Clayton couldn't keep his hands off them.

We are looking forward to a fun, memorable day today.

More to come later..

A Ray of Light...Charlotte

When in the midst of a storm, how welcome is a ray of sunshine that brightens and warms all it illuminates.

Charlotte Ruth joined our family just over a week ago when we were up in Denver for Emmett's weekly clinic appointment.  Katy wasn't due until the 9th, but Charlotte had other plans.  The story of the birth I may add to this post at a later date, but what I want to express today is how wonderful it's been to experience the joys that a new baby brings into a family during an otherwise troubling time.

Emmett is head over heels for his new baby sister!  He loves to hold, kiss, and cuddle her all day long, and he even changes her diaper.  Tonight he asked if she could sit next to him during dinner and he gently rocked her in her bouncer all during the meal.  It's heartwarming to see the love he has for his little sister.

Clayton loves his sister too.  He calls her "CH"arlit.  And he always remember where she is.  When we hear funny baby noises coming from the other room, he reminds us, "that's just CH-arlit".

We've absolutely loved having this beautiful ray of light that has lifted and blessed our entire family over the past week.  In the midst of our storm, it's been a wonderful blessing to have this gift from heaven help us feel the love that surrounds us.

Clinical Trial Started

Emmett started the clinical trial on Friday.  It's an oral drug called tazemetostat that Emmett will take twice a day.  They treat the drug like it's toxic chemotherapy -- we have to return all the syringes, gloves and wipes that come in contact with the drug.  It comes in a chemotherapy bag.  It's especially important that Katy not come into contact with the drug being pregnant.   Even though adults and other kids have been treated with this drug, the fact that it's still not FDA approved is a pretty big deal.  It's a little unsettling to take something that's treated like poison and give it to your son.

Emmett has to take 28.8 milliliters of the drug morning and night!  That's like having to take two tablespoons of nasty cough syrup twice a day.  He did pretty good on Friday, but since then it's gotten harder and harder to get him to take it.

The good news is that the doctors have already identified the effective dose on this drug, and that's the dose Emmett will receive.  Hopefully this means it will be more effective in treating his disease.  The initial kids treated on this drug generally didn't do well, but they started off at 280 mg/m^2.  The dose Emmett is on is 1200 mg/m^2.  They've given kids up to 1500 mg/m^2, but at that dose the kids started showing side effects (increased fatigue, nausea, blood count suppression, etc.).  So they backed the dose back down to 1200.  The higher the dose, they more they expect will cross the blood brain barrier, and that's where Emmett's disease is.  Hopefully 1200 is Emmett's golden ticket.  (Somewhat ironically, the effective dose for adults is 800 mg given twice a day....notice that it's not "/m^2".  So the kids can get higher doses of the drug than adults, depending on their surface area.  I'm not sure what they've calculated for Emmett's m^2.)


They kept us in the clinic all day Friday so they could do blood draws and run EKGs on Emmett throughout the day to make sure the drug wasn't having any negative acute effects.  Everything looked good so they released us Friday evening.  We're not scheduled to be back in the clinic until next Friday, so Saturday we drove back to Albuquerque and we'll spend a few days here before making the return trip to Denver.  We expected we would need to stay in Denver the entire time that Emmett is on this clinical trial, but it sounds like we will have some opportunities to commute back and forth.

We pray that this drug is effective against Emmett's tumor and that he'll be brave and strong enough to take it willingly.  Go Little Lion!

Children's in Denver (Aurora)

We arrived in Denver on Sunday night and have spent the week at the Aurora Ronald McDonald House.  The Children's Hospital extension that Emmett is being seen by is in Aurora, CO.  So far this week we've been working on all Emmett's intake activities.  Before they'll let him start this EZH2 clinical trial they have to run a bunch of baseline tests to see where he's at.  We did consents on Monday, an MRI, echo, and EKG on Tuesday, and then a Lumbar Puncture (LP) on Wednesday.

The MRI showed that this spot has grown slightly in the six weeks since Emmett's last scan.  It was measuring ~11mm in late June and it measured ~14mm in length on Tuesday.  We were hoping it would be stable or reduced, but we're glad it hasn't grown more.  They also didn't see any spreading to other areas since his last scan.  The oncologist wanted to at least mention the option of surgery because if it gets to the point that it's compressing his spinal cord, we would need to do something quickly.  The team in Boston made it sound like surgery was off the table, but it sounds like Denver isn't in that same boat (though there certainly would be risks going into Emmett's spine for a third time).  Unfortunately there isn't much room for this thing to grow before it would start causing problems.

The fact that it's grown confirms that it's cancer and needs to be treated.  If it's not in the cards for Emmett's immune system to activate and remove this spot on it's own, then we shift our focus to pray that one of these treatments is effective.  There's still the question of whether this drug will cross the blood brain barrier.

Emmett's next MRI isn't for another two months.  I asked whether we should consider getting a scan sooner, but given the growth rate of the tumor the oncologist was comfortable waiting 2 months unless Emmett starts exhibiting systems (weakness in his legs, etc.).

We start the EZH2 trial drug Friday morning (8/11/17).  We pray that it's effective against this spot!

Emmett and Clayton are loving their life here in Aurora and think we're on vacation at a cool resort with free arcade games you can play all day long.  They made some friends with other kids staying at the house tonight and enjoyed an evening out riding bikes tonight.

Katy's doing well and the baby's staying put for now.  Incidentally, we just got the results of Emmett's LP yesterday and it was clear!

That's all for tonight.  Thanks again for all your prayers and faith!

Look who we ran into doing service at the Aurora RMH?!

Look who thinks it would be cool to grow up to be a geeky engineer?

Look who's in heaven?  (i.e. we have no video games at home.)

The trash shoot on the third floor is Emmett's favorite thing!

The hangout.

Whenever Emmett's in scrubs, Clayton has to join him!

Fearsome threesome!