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!



Friday, November 2, 2012

Meet Destiny

On October 5th Emmett began his 7th round of chemotherapy after having about six weeks off. It was a Friday afternoon and we started in the Jimmy Fund Clinic where they began Emmett's pre-hydration (you have to be pretty hydrated before they'll start dripping chemo into your veins).  This round included a three-day infusion so later in the day we were admitted to the hospital.  It was apparently a very busy on 9 North (our usual home) so they sent us down to the 6th floor, argh! (6North is the general oncology floor, where they are obviously know all about chemo, etc...., but we just don't know any of the staff personally.  We have stayed on a floor before that was for organ transplants-kind of cool-but they aren't familiar with his meds or any of that stuff.  We were glad he wasn't getting chemo during that stay!)  This had only happened once before, and we were only there for a night or two before we were able to move back up to 9N where we know and love all the staff.

We were a little sad to be away from our usual friends, but one bonus was that Emmett was new to this place, so he didn't know where the elevators were and didn't know his way around, which means he was happy to play in the play room (which is actually a little bigger than the one on 9N and has an amazing view) and wasn't trying to run around the whole hospital, like usual.

On Saturday, when Emmett was in the playroom, this pretty 11 year old girl came in and started painting and Emmett showed a liking to it, so she gave him the Halloween pumpkin she made (and later painted him a pink car...Emmett's color choice ;). And from then on, she just adored Emmett and has been so nice to him! She's here from Alabama with her mom...for a full month! That's a long time to be in the hospital away from the rest of your family! They did bring us back to 9N, but when we left Tuesday morning, we made sure to go down and say goodbye to Destiny, too! She is the sweetest girl we've ever met I think! We're happy for our short stay on 6N so we could meet her. 
(Lately, its been harder and harder to get Emmett to smile for the camera, Little Stinker!)
Here's her handiwork: