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!

LP Results

We received Emmett's lumbar puncture results today and the test identified no malignant cells!  Yay!  We were so excited to hear the news.  This means that they didn't see tumor cells floating around in his spinal fluid.

Now this isn't concrete evidence that the spot on his spinal cord isn't trying to spread, but it's certainly an encouraging sign.  And we'll take any encouragement we can get at this point.

A special thanks to those who have been praying with us!

Status

We have still not gotten the results from Emmett's LP.  We should receive them tomorrow.  We did hear from our oncologist this week, however.  In advance of getting the LP results, they have already concluded that Emmett does need some type of treatment again.  Their rationale is that this small nodule is in the area of his primary tumor, and it's growing.  "What else could it be," they ask?  The good news is that there ARE three treatment options (all clinical trials), and the side effects are minimal for the first two.

The first option they call "EZH2".  This is an oral medication that Emmett would take at home twice a day.  It shouldn't impact his function or quality of life.  The one downside is that they don't know how much of this drug will cross the blood brain barrier and get to the tumor site.  But it has shown some efficacy on some patients.  And they've already identified the correct dose level.  Emmett would have to check into the clinic once a week on this drug, but otherwise this would be completely outpatient.

The second option is an immunotherapy drug.  In essence this drug tries to activate the patient's immune system to fight the tumor.  This is an IV drug given once every three weeks.  The risk of this drug is that it can potentially unleash the patient's immune system and cause autoimmune problems, though generally just while taking the drug.  It may cause inflammation around the tumor site (and other areas) that may make differentiating disease progression vs. inflammation difficult.  This would also be outpatient.  The correct dose level has also been identified for this drug.

The third option is an "anti-angiogenic" therapy that tries to cut off a tumor's blood supply.  This protocol is out of Vienna would use more traditional chemotherapy drugs, but in a different way.  It requires the patient to spend a lot of time in the clinic with intrathecal therapy (i.e. brain injections) 5 days a week in the clinic along with other oral drugs as well.  So this option would be labor intensive.  The upside is that though this protocol uses traditional chemotherapy drugs, it would be a lot less severe than what he got in his prior chemotherapy treatment.

So those are the main treatment options.

The good news is that Emmett's quality of life would be pretty good with all three options, and especially with the first two.   And it sounds like Dr. Chi will leave it up to us as to when we would start -- we could begin immediately, or we could wait until we start to see symptoms from the tumor...but she leans towards starting sooner rather than later.

The other good news is that in order to be able to start one of these trials, Emmett's tumor must be at least 1 cm in one dimension.  Right now it's only 0.9 cm..and in some strange way, that makes me very happy.  I hope Emmett never qualifies these studies.  I hope that the spot the doctors are seeing somehow reduces on it's own, or turns out to be inflammation or something else benign.  That's what I'll be praying for.  And if it turns out that it is tumor, I'll be praying that it's susceptible these treatments.

We continue to count the miracles we've seen on our journey.  And there have been so many!  We have enjoyed five wonderful, precious, joyous years with this sweet boy since he was diagnosed with a disease that could have taken his life within weeks.  Every single day has been a tender mercy from God that will never be taken away from us.  Five years, five months, and seven days since Emmett's diagnosis adds up to 1,984 days -- 1,984 miracles we've been blessed with.  God has blessed our family so much!  And we are so thankful!  And will always be!

We fast and pray that the blessings will continue!

LP

Emmett did great on his lumbar puncture today!  It was done at UNMH by Dr. Kuttish (sp?).  Clayton and Katy did great too.

Afterwards Emmett enjoyed playing with his new (and only) fidget spinner while enjoying pizza.  He's wanted a fidget spinner for a long time and finally finished earning the $$ for it last night.  We picked it up on the way to the hospital this morning.

We'll get the LP results in a couple of days.

Tonight Emmett said the opening prayer at a fundraising dinner for the Children's Cancer Fund of New Mexico.  There were 600 people there!  He did a great job and didn't get nervous.  What a trooper!  "Two Ties" Clayton knows how to eat a roll (and sometimes reminds me of Harpo Marx). Who are these kids' parents anyway?

 

 

 

6/30/17 MRI

We recently traveled to Boston for Emmett's latest follow-up MRI.  He did it again without sedation!  He's on a roll. 

One spot in the scan showed some small changes from last time.  This is the area of his "tethered spinal cord" that the doctors have commented on in the past.  The area is on the front side of his spinal cord at the C5-C6 level.  They also noted a compression fracture in one of his vertebra. 

The doctors ordered a follow-up PET/CT scan to look for sugar uptake in the tissues in this area, and the scan identified a low level of activity at the spot in question.

It's uncertain where we go from here.  In the past the doctors have found logical explanations for the findings in this area.  We hope and pray the same is true this time.  In the coming days Emmett will have a lumbar puncture back home in New Mexico to check for malignant cells in his spinal fluid.

We welcome your prayers and faith as we wait for more good news for Emmett!

Jaunary 2017 MRI

In January we made the trek to Boston for Emmett's routine follow up MRI.  Since Emmett finished his second round of proton radiation therapy in January 2016, all of his follow up MRIs have been in New Mexico.  It's been wonderful to be at home here in Albuquerque for the past year.  However, it was time to visit the doctors in Boston again, and so we headed that way in January for an MRI and a round of other follow up appointments.

Emmett made it through the entire MRI without sedation!  This is the first time he's done it in Boston.  We continue to be so proud of him for the bravery he shows in the midst of continued medical exams, tests, etc.  He continues to be our Brave Little Lion!

The scan was clear!!!  We were so excited to hear the news!  I can't impress how anxious we get about these scans.  It's almost like life stops when each scan arrives.  And you hope and pray that it starts up afterwards.  How blessed and thankful we felt when we received the news that all looks good!  Additionally, given that he finished radiation over a year ago, the doctors said that we can now space the scans out to once every six months instead of once every three!  This is such exciting news for our family!  Instead of buying life three months at a time, we'll get six months!  That seems like a lifetime!  What's even more exciting is that fact the that if the doctors are comfortable spacing out his scans, that can only mean that they are getting more comfortable with his overall prognosis.  And how exciting that news is to us!  The other good news from this trip was that Emmett's hearing is still perfect.  That's great news too!

As we walked out of the hospital that evening, I was completely overcome.  We've had the opportunity to be overcome with many different emotions at times since Emmett's diagnosis.  What I was overcome with as we walked out of the hospital that January evening was inexpressible gratitude.  And what a wonderful thing to experience, as inadequate as it makes you feel!  We feel so blessed, so thankful, so fortunate...and yet so inadequate and so undeserving all at the same time.  We still having our sweet Emmett with us while other families have lost their precious loved ones.  Why Emmett's been allowed to stay while others were called home no one in this world can answer.  But how grateful we are that he's still in our charge, for whatever reason.

We express our thanks to God for this blessing many times a day.  And pray for those who are still suffering, and for those who have lost their loved ones.  How precious are your little ones!  Love and appreciate them each and every day!  For each day is a miracle!