Tuesday, December 25, 2012

Joy to the World!

Just thought I would put this in here for fun, since I found it in my mom's collection. This is Merry Christmas 2010! (We thought it was pretty creative of us to use the nativity card kind of as a mix between a birth announcement and Christmas card!

We just wanted to say Merry Christmas to all of our friends and family!  

While it has been a hard month after receiving such bad news from his November MRI, I cannot imagine a better time of year to have received it.  As devastating as it may be to hear a team of medical professionals tell you there's not much more to be done for your son, there is no time of year that everyone is more hopeful, more faithful and more believing in miracles than at Christmas time!  We are grateful to be able to celebrate the birth of our Savior Jesus Christ, who is the source of all that goodness.  These were my thoughts before the PET scan was even scheduled, but only proves my point more!  We couldn't have hoped for better results from that scan. We have thoroughly enjoyed the Christmas season and all the joys, happiness and spirit that comes along with it.  We have attended a Christmas concert, picked out a Christmas tree, went and looked at lights, went to a Christmas party, enjoyed Christmas shopping with and for Emmett (it's nice when their this young-they can pick out their own toys and forget all about it by Christmas ;), seen nativities (even a live one!), rode the Polar Express and had lots of fun spending this season together.  There is always peace to be found in our Savior and we hope no matter your own circumstances, you have been able to feel that as much as we have this Christmas.  We thank you all for you continued love, support, generosity and prayers that helps bring that peace into our lives!

     We wish you all a very Merry Christmas!
                                                                    With much love,
                                                                      The Lillroses

Sunday, December 23, 2012

Christmas Gift

Two of the medical teams we consulted for second opinions over the past two months wanted to see a PET scan of Emmett's tumor.  Our doctors here at Dana Farber have not requested a PET scan previously so they scheduled one for this past Wednesday.

A PET scan is a nuclear medicine study where the patient is injected with a radioactive isotope mixed with a sugar.  The patient is then put in a scanner which looks for parts of the body that are absorbing lots of sugar as indicated by concentrations of radiation.  When cancer is actively growing it needs a lot of energy which it absorbs in the form of blood sugar/glucose.  If a tumor sucks up lots of sugar it's thought to be active or growing.  If it doesn't absorb sugar it's thought to be dormant or dead.  Though not used nearly as much for diagnosing as an MRI or CT scan, the PET does provide an indication of the activity of the tumor not afforded by the more popular imaging studies.

Well, Emmett's PET/CT scan was conducted as planned on Wednesday.  And what did they see when looking at his left brachial plexus?  Absolutely nothing!  It looks completely cold, inactive, dormant, and hopefully dead (what we're really praying for).  This is the best news we've gotten in a long time!  There were a few things identified by the PET that they want to look at more closely including something in one of his lungs and some spotting around his spine, but the initial impression is that these are related to Emmett's surgeries and are otherwise benign.

Our oncologists are still anxious about Emmett's remaining tumor.  Prior to the scan they said that even if the PET came back cold it wouldn't change their desired course of action for Emmett, at best it gives a warm fuzzy that perhaps we're safe until the end of the year.  Because we don't have a baseline PET to compare it against the conclusions we can draw are limited -- perhaps Emmett's tumor looked cold even when it was actively growing.  There's only so much that one data point can tell us.

But for us this is huge.  This is the first indication that perhaps Emmett's tumor is responding, perhaps it is being kept in check.  Perhaps it is dying.  We hope and pray it is.

We still have a lot of hard decisions to make, but tonight we're hopeful, tonight we're celebrating.  Even though we're back in the hospital tonight with fever and neutropenia, even if we have to spend Christmas within the confines of Children's Hospital, we're hopeful, we're grateful, and we're thankful for this wonderful Christmas gift.

May we all find reasons to celebrate this wonderful Christmas season.

Saturday, December 15, 2012

Medical Update

After an extended Thanksgiving holiday with family in Michigan we returned to Boston last Thursday for a meeting with Emmett's doctors to discuss the results of his 11/20/12 MRI.  The MRI showed that the tumor hadn't changed since his previous MRI in October.

This is both good and bad news: good because it shows that the tumor isn't growing, bad because it demonstrated that chemotherapy alone isn't having a significant affect on the tumor.

Dr. Goumnerova, Emmett's neurosurgeon, indicated that she will not consider another surgery for Emmett at this point.  There is no way to get all of the remaining tumor out, and if they can't get everything out, there's no point to removing anything, so she says.  The stem cell transplant team was also at the meeting and they stated that they will not consider Emmett's case as long as he has any evidence of disease (even microscopically).

We were completely blindsided by this conversation.  We were expecting to discuss options to get Emmett ready for surgery and then stem cell transplant which constitute our oncologist's most hopeful path to cure.  Instead we find out that both these options are off the table. 

With the neurosurgery and stem cell teams declining Emmett's case, Dana Farber's official prognosis for Emmett is dismal.  However, our oncology team remains hopeful and has other options available.  First off they want us to look for another surgical team that will consider the surgery.  Then they have some other drugs we can try that are showing promise in other patients.  In the meantime we'll continue the supplemental therapies we've found that we believe are helping Our Brave Little Lion.

It's nice to know our doctors' thoughts, but we really only care about what God thinks.  We beg and plead that He will allow us to continue serving as stewards over one of His most precious children.  To say the very least, it is the greatest blessing of our lives.  The thought of losing that responsibility is absolutely unbearable.  Gratefully the gospel continues to bring us hope and peace.

We especially find comfort in the Lord's teachings about children (Matthew 18:1-14, 19:14; 3 Nephi 17:20-25; 26:14-16).  Clearly His love, care, and compassion for each individual child in immeasurable.  Over the last couple of months Emmett has started offering prayers (with some help, of course).  Even though he never eats himself, he's very insistent that we always kneel for prayer before meals even if it's just a snack.  Perhaps the most touching prayers I've ever heard are the ones Emmett has offered for himself, asking for a healing blessing for "et" and for his cancer to go away.  I know God hears those sincere prayers...offered by one of his sweet, precious, innocent children.

We pray for the strength to accept Heavenly Father's answer to Emmett's prayers, whatever it may be...and we continue to exercise our faith that the answer may be the one we're all hoping for.

Sunday, December 9, 2012

This week on YouTube

Emmett started being interested in trains back when we first got to Boston, so Aunt Besty Pants was clever and found this video on YouTube, which he loved.  This opened up a whole new world of enertainment! Soon helicopters became an infatuation and so we started looking for helicopter videos and then this became a new favorite, and then these were pretty exciting, too.

Searching for helicopters one day with Lah (Aunt Laree) opened up a whole new can of worms when she discovered TuTiTu! He loved this one, which led to discovering other cartoons and other odd things.  It was funny watching him try to learn to say TuTiTu....it really was a tongue twister for him.  Now he's shortened it to what he can handle, calling it "Too Tee!"  We think this has kind of become the generic name for "let me watch YouTube!" and asks all the time for it.  This led to some other amazing videos such as tutorials on how to use/eat? Asian Candy and the even more famous "Kutsuwa-Aroma Beads making kit" (I wonder what it smells like).  He watched ones like this a bit, too.  And random things like this.  Seriously, 23 million hits?!??!  I know my kid watched it a few times, but really?!?  That many people have watched this?  why?  Then there's these train videos that he loved, but we tried to avoid at all costs.  For whatever reason, we found it extremely annoying.   

Whenever Micah's trying to get anything done on the computer, Emmett will sneak over and lean up against him like a cat and in a sweet voice say, "Dah-eee, too tee?!"  Micah has mastered how to balance watching a little show with Emmett and still being able to write emails or whatever.  He'll have two different windows open so they each take up half the screen so they both he and Emmett can do their own thing at the same time.  One morning in the hospital (a few months ago) as Emmett was tethered to an IV pole, Micah's trying to entertain Emmett and has him on his lap.  Dr. Kieran comes in on rounds and we have a serious  conversation about where we are medically and what they expect at Emmett's next MRI, etc....  Micah asks as this conversation is coming to a close, "What else can we do right now (implying getting Emmett to have the best MRI results)?"  Dr. Kieran answers "Get another laptop" and of course we start laughing. He sees exactly what's going on-how Emmett is slowly taking over the screen while Micah's trying to do some research and stuff.  Dr. Kieran has a great sense of humor and it comes out at random times.  Sometimes, we're not even sure if he's meaning to be funny, which usually makes us laugh even more.

Here's one that was another favorite for a week or so.  He's seen this one also a few times and it makes him laugh, as balloons are a favorite toy right now (we'll have to post that some other time).  Around his birthday, you'll remember this favorite.  In Michigan over Thanksgiving, he watched this video over and over and we all found it disgusting, plus I'm not sure what I think about the 'cook'.  He also kept watching candy apples, then found this one, but wouldn't ever watch it to the end and left us all hanging....I mean really, who isn't curious about how they make gum?!?  And what would a blog post be without mentioning his love for trucks-fake or real!  

Emmett will watch YouTube on his iPad, although I'm sure most of you are aware it's not really a great idea to have your kid have free access to YouTube.  You never know what movies will pop up afterwards, so we've closed it on the iPads usually.  This is how he loves to watch, though.  He taps on the video he wants to watch, which makes it full screen.  Then he pauses it, presses done so then it brings the viewing screen back to the smaller size, then he presses play again.  This is all done, because as you probably never cared about, but is VERY important to Emmett, is that watching on full screen blocks his favorite feature.  He loves the smaller screen because then there is a sidebar of lots of other videos that are similar to the one you're watching.  He loves to swipe through these while he's watching the chosen one at the moment.  It's really funny.  Emmett has so many peculiar and particular ways of doing things.  What's even funnier is that he's more familiar with an iPad than a laptop, so when he sees YouTube on a monitor, if you're not fast enough with the mouse, he will reach over and try to swipe the screen, to get the movies to scroll.  Micah made the mistake of showing him how to use a mouse this summer though and unfortunately, he picked that up pretty quickly, too. 

Anyways, hope you enjoy being in the spastic mind of a two year old and seeing what catches his attention!  It always makes me wonder what kinds of things he is thinking about!