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!

Friday, November 30, 2012

Halloween

The holiday kicked off a week or 2 early at this trunk or treat at church.  This is my brother's car.  I thought it was pretty awesome.  His wife dressed up as a dentist and the car kept in theme.  (And he's going to dental school, so it's very fitting and her costume was pretty official)
...checking out their loot....
After we went on a little walk in the woods & Emmett loved the leaves & asked to be buried in them.

On real Halloween, we started off the day by saying hi to our friend, but that is a different story for later....

The week of Halloween was Emmett's 8th round of chemo. It was an outpatient round, which is kind of nice. This is his 2nd round that was outpatient (I believe the 6th round was also outpatient). Instead of having to be in the hospital for a week, we just go to the clinic every day. What determines this is which chemo drugs are on for that round; some drugs are a continuous infusion over 48 or 72 hours, which means he has to stay overnight. Other drugs are shorter-just an hour or 2 even 4 or 5, so we can get them in clinic instead of the hospital and go home each day.
Halloween fell on Wednesday of that week and was actually pretty fun at the Jimmy Fund Clinic! It had been decorated all week, a lot of the staff were in costume, there was a pizza party, plus it was nice to have such an upbeat day there. Most of all, though, they know how to trick or treat!
First, they gave all the kids a cute little box of treats.  
I thought this was his box for trick or treating.  I was wrong.
Boy, was I wrong...they give out pillowcases for that!!  The box full of treats was just an appetizer.
Emmett LOVES this shopping cart they have in clinic (or shopping trolley as one of my favorite docs from downunder calls it).  Our social worker asked if Emmett wanted to take a push toy to help walk around for Trick or Treating and that turned out to be a great idea. First, because he loves to push it and it helps him balance while walking and second, because it was a great holder for his candy.  In case the pillowcase didn't shout greedy, 'fill my shopping cart' sure did.  This is his buddy Richi.  He LOVES Halloween (but not candy).  Since he lives in Spain where it's not really celebrated, he was VERY excited to celebrate here.  How awesome is his costume?!  He helped Emmett push his cart when he got tired.  (Don't you love that the hall light above them looks like a monster's eye?!  How appropriate)
It didn't take long at all to figure out how ToT worked. 


I think this was half the group.  There weren't a ton of kids, but the employees that had brought candy brought enough for a lot of kids, so they were pretty generous.
Emmett doesn't really eat candy....or anything for that matter...but he sure gets excited seeing it.  He'd try to pick up one of each color and of course if I tried to stop him, the Trick or Treatee would have none of that and would instead help him with his goal. 
Trick or Treating is a lot of work, so he got tired again & I helped him this time.  We went to the 16th floor,
 the cafeteria, down another hall and all through the clinic.  Not bad. And I'm not trying to show off
his manly kid chest-he was pretty hot in this bad boy costume.  The clinic pumps the AC in summer and keeps it toasty warm in winter!
A fellow ATRT champ, Kasey.  She's from Ireland!
 Back at home that evening:
Cousins Tys and Ben came over for Halloween Dinner and then a little ToT time
I decided to go the extra mile when I made corn muffins for dinner.
Oops (or Utz!, as Emmett likes to say) -I forgot to put on the timer,
but they were still nice and soft and orange inside.
We took him mostly to neighbors we grew up with and some of our new neighbor friends.
And of course, to 'Ma and 'Pa's house!
I wish I'd gotten a picture of the whole group together, because not only was it Emmett's first time trick or treating, it was also Micah's, cousin Ben's and Aunt Michelle's!  I think everyone had a fun time!


Thursday, November 29, 2012

Destiny's Golden Birthday


Emmett's sweet friend Destiny happened to be in the hospital on her birthday...and not just any birthday, but her Golden Birthday!  (Turning 12 on the 12th)  We had been discharged earlier that week, but we made sure to come down just to visit her on her birthday-we didn't want to miss out on a chance to party!  We made her a cake, just in case she didn't get one.  But we were so excited when we showed up late in the afternoon to find out despite being in the hospital, she had had quite the birthday!  3 cakes, tons of cash and boxes full of clothes and books and fun stuff and EVERYTHING pink, plus she had some relatives that were able to visit.  

Like usual, Emmett mooched one of her balloons, but she is always 
so happy to share or do anything to get a smile out of him ;)
He loves playing with her, which is nice because she loves to make him smile and is so good at it!
It was quite the party-they even sent Emmett home with a goodie bag!

Happy Birthday Destiny!!! 

Tuesday, November 27, 2012

Flu Shots...(on a lighter note)

Let's just say that Emmett is way braver than both of us combined.  Neither of us have ever gotten a flu shot before. But as an oncology patient, Emmett HAS to get one, and we are strongly encouraged to get one as well.  Our insurance company is designed to make things difficult, however, and the only way they would cover it was if we got them in a doctor's office (Walgreen's "a poke for a bloke" flu shot clinic and Uncle Jack's Garage apparently aren't good enough).  Getting a primary care physician is almost always more trouble than it's worth, and so we opted for the "easy way out" and decided to look for an alternate solution...and boy did we get what was coming to us.

One day while Emmett was inpatient at Children's Hospital Boston we came across a flu shot clinic in the lobby (excuse me, I misspoke -- it's now officially "Boston Children's Hospital" to emphasize Boston, though they're too cheap to change all the decals just yet).  Turns out it was only for staff, and they were too smart to accept my visitor's badge as an employee ID (I did try), but it started wheels turning that perhaps we could get our flu shots in the hospital.

When we were back in Emmett's room we asked if there was any way they could give us flu shots.  With trepidation, the nursing staff acknowledged that they could have a CNA sneak some vials from the pharmacy in their back pocket.  They also had a stash of unaccounted needles they could raid.  And then Jess, Emmett's nurse, could administer our shots.

So we were faced with a decision...our thought process was as follows:

PROS:  (1) Get the shots quickly without the hassle of a primary care, and (2) experience firsthand the nursing care Emmett receives in the hospital.

CONS:  (1) This is a PEDIATRIC hospital, not an ADULT hospital, (2) administering shots to adults is subtly different than administering them to kids and requires a slightly different skill set, (3) they only had elephant size needles available, and  (4) this gave Jess the perfect opportunity to get back at me for all the geeky, engineer-esk questions I've pestered her with over the last eight months (honestly, who wouldn't want to learn all there is to know about maple syrup urine disease?).

Notice there are twice as many cons as there are pros.  (In my defense I should mention that I didn't know con number 4 existed until later).  But we had to make the decision quickly, and unfortunately I am a cheap engineer and convenience and thrift prevailed.

We had to wait about an hour while the goods were secured, all the while getting more and more anxious.  When Jess finally arrived she first showed us the needle to calm our fears.  Katy was thrilled at the sight.


Then she put the exposed needle on the extremely sanitary hospital food table while she prepared our torture devices.


Being a gentleman, naturally I let Katy go first. (She insisted, actually.)



Now time for the elephant needle.  I prepared for the torture as best I could.


First clean...


Then poke...


Then twist...and pull...and drip.  No joke.



"Adult anatomy really is so much different than kid anatomy," she said.  "And besides, who knew it was possible to hit nerve, bone, and artery with one needle?  I really should get a medal.  But don't worry, the body heals...eventually."

And it did...a week later.

Kidding aside, it really was a great experience.  We were both so excited to experience what Emmett experiences in some small way.  And the care was great -- really great.  That's probably the thing we've been the most pleased with in coming to Boston -- the care in Boston Children's Hospital.  And Jess, I wouldn't have a flu shot from anyone else.  You really did a great job and I hardly felt a thing.  I wouldn't have even known I was bleeding had it not been for the blood on the window.  And it's not your fault my heavily muscled arm is so difficult to get a needle in and out of :)

The best part of it all was to be able to show Emmett our band aids!  About that time he started getting excited about the band aids he would get after shots.  It was cool to be able to show him our band aids to let him know that we'd gotten shots too.  I kept mine on until it fell off two weeks later so I could show it to him all the time.

Emmett's the real warrior -- he's got multiple pokes



Saturday, November 24, 2012

MRI Results

We received Emmett's MRI results on Wednesday morning while driving to Michigan.  The preliminary read was that there's been no significant change since his last MRI in October.  This mean's that there's still tumor there, but that it isn't growing right now.  Our doctors now must come to agreement on the best path forward for Emmett.

We'll continue fighting, searching, and working to find the path that's best for Emmett.

We're so thankful for each good day we get with Emmett.  Thankful for a chance to see my family in Michigan for a few days.  So glad Emmett is happy and active right now.  With such an aggressive cancer, we're so happy it has not grown nor spread. We're so thankful for the sustaining power of the prayers of so many.  So grateful that God has blessed us with stewardship over one of his most precious children.  We're thankful for the many eternal lessons Emmett teaches us every day.

It's paradoxical that we come into this world so innocent, so Christlike, so believing...and then we grow into adulthood and find so many reasons to doubt and question.  And then we spend the rest of our lives working to reacquire all the qualities that made us so Christlike in our childhood.

So grateful for each lesson Emmett teaches us.  Pray we can learn from every one.

Monday, November 19, 2012

MRI Tomorrow

We don't really have too much new info to share, but wanted to provide a brief update.  After coming out of induction chemotherapy (the first five months) with residual tumor, our oncologists wanted to remove the remaining tumor and sacrifice nerves in Emmett's left shoulder in the process.  The surgeon wasn't so anxious, and after a month of indecision the oncologist and surgeon agreed to do two more rounds of chemotherapy to see if the tumor responds before deciding how to proceed.  If the tumor responds, it strengthens the case that it can be controlled and that drastic surgery is justified.  If it doesn't respond, we're left looking for other options.

Katy, Emmett, and I, meanwhile, are looking for something more miraculous -- what if Emmett's immune system has attacked and destroyed the tumor, or what if a new surgery/treatment is pioneered which preserves function in his arm while removing the tumor?  With God all things are possible.

Emmett's MRI is tomorrow, 11/20/12.  We're hoping and praying for the best.  And we appreciate the many many people who are praying with us.

Sunday, November 18, 2012

Shoes

Emmett loves shoes; truthfully, he really likes clothes in general. Even months ago, I'd hold out 2 shirts and let him pick which one he wanted to wear and he would really look back and forth between the 2 and decide. He really has opinions on what he wears. It's pretty funny. We found some flip flops for him this summer and he wouldn't take them off. The sandals and his feet both stank like a teenage boy's feet. He'd sleep with them on. If he wasn't wearing them, he'd ask for them. Even in the halls at the hospital or out on a walk random people would comment on his flip flops.

The other night....or since I'm so slow at posting, last month is probably more like it, Emmett took a nap and his pants are wet, so we took them off as he was falling asleep.  When he woke up, all he wanted to do was go downstairs (our bedroom is upstairs and all the fun and toys and people are always downstairs) and was very opposed to taking a second to put pants on.  However, he still wanted to put shoes on and was willing to take a minute to do that.  So he hung out like this for the night.  He makes me laugh!

Here he is with his very stylish cousin, Tyson!

Friday, November 16, 2012

easy breezy bathtime

Emmett had his Central Line taken out a few months ago now, when there was an infection. The intent was to put in a temporary PICC Line and replace the CVL in a few weeks. However, that was in the middle of not really knowing what they were doing to do next. When they decided to essentially buy some time with 2 more rounds of chemo, they just left the PICC line in since they could do the chemo through that. No need to go to the OR for a new CVL until they decided he needed one again. A CVL is a permanent IV essentially that comes out of his chest and has a dressing around it that has to stay clean to keep the site sterile. When he bathed, I'd have to wrap his whole chest up and try to keep it dry. Needless to say, it is MUCH easier to just have to wrap his arm where the PICC line is and he begs for baths now!



Friday, November 9, 2012

Fire Time

One of my early memories of Grandpa T was being taught how to build fires in the wood stove.  One time he even let me hold the match, and as it started to burn close to my fingers he told me to hold the tip of the match up so it wouldn't burn me.  Unfortunately I tipped it the wrong way and burned myself good!  Needless to say I've never forgotten the experience of that day.

Grandpa always challenged my brother and me to build "single-match fires" -- a demonstration of skill.   Funny how he preferred to use the blow torch.

I enjoyed seeing the tradition of grandfathers teaching grandsons how to build fires continued this year.  And I'm happy to report there were no casualties!





YAY for fires and hot chocolate and snuggly soft blankets!  (And yes, he does try to blow this fire out, too.)

Sunday, November 4, 2012

The Parked Truck

Turns out the Kenton Landscape/Masonry, who are the ones that actually dropped the trucks off in our yard for Emmett a few weeks/months?!? ago, are not that far away. So sometimes we head down there and Emmett visits his old friend, who has been parked on the lot most days. And finds that same button that makes the beeping sound. Cousin Tyson came, too, last time!