Friday, July 14, 2017

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 ear a roll (and sometimes reminds me of Harpo Marx). Who are these kids' parents anyway?






Wednesday, July 12, 2017

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!

Sunday, April 2, 2017

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!

Sunday, October 2, 2016

MRI Results - Sept 2016

Emmett's latest MRI was 9/20/16.  We opted to do this scan in New Mexico again.  This scan included both the brain and spine, and Emmett again did the whole thing unsedated!  We're so proud of him!  At this point the doctors will probably stop scheduling sedated scans, so that means a whole lot less anesthesia than he's been getting up to this point.  And the scans are so much shorter unsedated, and there's no recovery afterwards.  So we love it.

We got the results on Monday, and things looked great!  The doctor said that she couldn't even find the spot without help of the radiologist because it has reduced so much.  And it didn't pick up any contrast this time.  So that's all awesome news.  We believe the team in Boston will be very pleased.

Last year at this time we were in Boston waiting for the doctors to decide what to do about this spot, and things didn't look promising.  AT/RT recurrence is generally incurable, and they were very upfront with that fact.  And here we are, a year later, back in Albuquerque, enjoying General Conference from the comfort of our own home, and from all appearances Emmett is doing great.

Words can't express our gratitude for the blessings of heaven we have received over the last year.  Every day is a miracle, and we've enjoyed another year!  And we will keep praying for more.  How thankful we are for those of you who continue to pray for our family; we feel the strength and the blessings of your prayers every day.  Thank you all for your continued support!  God bless you all!


Summer fun in the mitten!

Thursday, June 16, 2016

June MRI

Emmett had another MRI this month (6/2/16).  Everything looked stable!  What was really exciting about this MRI is that Emmett did the entire thing unsedated!  The anesthesiologist tried to talk us out of having him attempt the scan unsedated.  Two scans ago he did a brain MRI without sedation, and that scan was 30 minutes.  But when it was time for his brain/spine/brachial plexus MRI in April, they insisted he wouldn't be able to lay still for two hours and they talked us into sedating him.

But this month I put my foot down.  Sure, if he got restless during the scan they would have to start over -- they want him to stay in the same position until after they've taken the images with contrast at the end.  But that was a risk I was willing to take...in an effort to reduce the risks and discomforts my son experiences when he's sedated for a scan.

We've been briefed endlessly on the dangers of sedation, but the doctors seem to forget about (and minimize) those risks when it's MRI time.  I understand when a child is young there's no other choice -- but Emmett's growing up!  And when we deprive him of electronic stimulation at home, there's no limit to what he'll do to keep the "movie goggles" on in the scanner.  And we decided to take a chance and give it a whirl.  And it's a good thing we did.

He was in the scanner for an hour and a half, and when he came out he was dripping sweat and his face was red where the movie goggles had been, but he was a happy camper who could walk straight and eat right away and was ready to return to his day.  And we were so proud of him!

No more fasting, less anesthesia, and more movies!  Win, win WIN!

Way to go Emmett!  We celebrated the best ways we know of.



 




We have yet to hear from the doctors on their recommended path forward.  We expect to go to Boston for consultations in the next few weeks, and probably will stay for some follow-on treatment.  But for now we're celebrating another good MRI!

Monday, May 23, 2016

MRI Results

Everything looked fine on Emmett's 4/28 MRI!  This MRI only included the spine and brachial plexus as those weren't included on Emmett's 3/3 scan.  They did note one spot at the C6 level that might be questionable, but looking at previous scans they can see the same thing all the way back to 2014, and it's unchanged today, so they're not overly concerned about it.  (We think this might be the same spot near Emmett's primary tumor that the Boston calls a "tethered spine" and has been watching closely?)  Emmett's next scan is 6/2, and that scan will include the brain, brachial plexus, and spine.

Because there weren't any tumors identified in the scan (yay!), Emmett is still not a candidate for the EZH2 study.  This is the study we've been hoping for because it has no significant side effects.  This means that any treatment we consider at this time will likely have a negative impact on Emmett's quality of life, and that's never fun.  If Emmett were experiencing symptoms from a tumor currently, it would make the decision to put him through harsh treatment easier to make.  But as it is, it seems the doctors are really reluctant to make him sick when he's so healthy otherwise.

The one thing that's become clear to us is that there's no clear, best path forward in the doctors' minds.  In some ways that's a good thing; it means Emmett is doing well and things look good enough that it's hard to justify making him sick.  At the same time, we do wish that the best treatment plan to help ensure Emmett's long term survival was more obvious.


Thursday, April 28, 2016

MRI's Over

Emmett completed his MRI this morning...and the boys are watching iPad together again.  On our way home.  More later.